Jack Tierney has lived with type 1 for more than 60 years. Not surprising, he was first misdiagnosed with type 2 and lived with that diagnosis for almost two years. He shares the story of finally getting the right diagnosis, living well with T1D before home blood sugar meters or fast acting insulins and why he just last year switched to a pump.
Stacey talks to Jack and his son Jamie. You can watch the video that brought them to our attention here.
In Tell Me Something Good – boy it was great to get back out to an actual in person conference. Shout out to not just FFL but to my local Charlotte community as well.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Previous episodes with people who've lived with type 1 for more than 50 years:
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Episode Transcription below:
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week Jack Tierney is 81 years old and was diagnosed with diabetes more than 60 years ago. He had classic symptoms but remembers being shocked to hear the news.
Jack Tierney 0:38
And he told me I was a diabetic and I said to him what's that I had never heard the word or knew nothing about it. And he told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two because this was January of 1960
Stacey Simms 1:00
Jack was mis diagnosed with Type two for almost two years. He shares the story of finally getting the right diagnosis living well with T1Dbefore home blood sugar meters or fast acting insolence and why he just last year, switch to a pump
in Tell me something good boy, it was great to get back out to an actual in person diabetes conference, shout out not just to friends for life, but to my local Charlotte community as well. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. Okay, so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed 14 and a half years ago, just before he turned to my husband lives with type two diabetes. I have diabetes, but I have a background in broadcasting. And that is how you get the podcast.
I got an email a couple of weeks ago from Jack Tierney, who you'll hear from today. And he said check out the 12 minute YouTube video that my son and La filmmaker has created for me, it's called an 81 year olds 62 year journey with type 1 diabetes. Well, that caught my attention. I've talked to quite a few people over the years who have lived a very long time with type one, it really is incredible to think about how they made it work without the things that we consider now like the very very basics right home blood sugar meters, and a one c test fast acting insulins, Jack and his son Jamie have a great story. And I will link up that video that started all of this in the show notes you can always go to Diabetes connections.com.
If you're listening on a podcast player, you know like apple or Spotify or Pandora, sometimes the show notes are a little wonky. And the links don't work, just head over to the episode homepage. And it also has a transcription.
If you follow me on social, you know that I went to the friends for life conference recently the first in person conference for me since March of 2020. I'm going to talk about that after the interview. But I wanted to say a quick Welcome to anybody new who is listening who found me there who I met at that conference, there were so many new people, it was great to be able to say hi and have some hugs and meet your kids. So I'll talk about that a little bit. And I'll get to Jack's story in just a moment.
But first Diabetes Connections is brought to you by Dario Health. And, you know, we first noticed Dario a couple of years ago at a conference and very thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections.
Jack and Jamie, thank you so much for joining me. I am so interested to hear this story. Thanks for making time for me today. Oh, you're welcome. We will hear Jack story and I can't wait to hear you in your own words. But Jimmy, let me just start with you. What made you create that video,
Jamie Tierney 4:19
my dad said he was working on some scripts about his thoughts on diabetes and living with it for over 60 years. He wrote a number of different stories about it and wanted to record that on camera. And so we started doing that and we have all seven or eight sorry, eight tapes, I believe, of doing that. But what I was most interested in is his personal story, his life story because once we got started there was there's a lot of things that I didn't know about his story and about about diabetes in general. And so that's what got me interested and then I wanted to follow up with with his doctor and with his with his brother to get multiple sides and also my mom I'm here to get her side of it. It's one of those things that started off as one thing and changed a little bit as we went.
Stacey Simms 5:06
All right. So Jack, you have lived 62 years with type one. Can you talk about your diagnosis? Because not too surprisingly, you weren't diagnosed correctly right away,
Jack Tierney 5:16
right? Yeah. In the first tape that I did with Jamie, I did talk about what happened with me, I actually came down with type one in 1959. At the time, my mother, who was only 43, had a brain tumor, and I was under a lot of stress, and I was attending college. In fact, when I was home with her after she had to have had a tumor removed, I did get the flu, like so many type ones, it just exacerbated or caused type 1 diabetes, because I weighed 100, I'm six foot four at the time, a weighed 150 pounds, I was down to 125 and peeing incessantly, like everyone who gets type one does. And so I returned to college. What happened was, I was just deteriorating so fast. I was in a small town in Indiana attending college. So I went to the local general practitioner, and he did some tests and told me my blood sugar was over 500 and then needed to be 80 to 120. And he told me, I was a diabetic. And I said to him, what's that I had never heard the word or knew nothing about it. He told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two, because this was January of 1960. And he was a general practitioner in a very small town. But what he did do was consult with the dietician at the college I was attending, and he treated me I now know pretty much like a type two diabetic because he put me on 1000 calorie diet, your I am weighing 125 and surviving on any did give me a pill, I believe it was called diag and Ace, I really survived that way for about 18 months, just living on 1000 calorie diet and and I was in a really rigorous academic program too. But then as my brother indicates on the video, I came home and he was really worried about me. And luckily I had transferred to the University of Dayton and I was, I got in touch with a wonderful Doctor Who put me on insulin shots. And that made all the difference in the world. You know, I did get back to weighing about 150 in about six months, and you know, took the taking shots. In fact, what I say on the video, when I added it all up, I've given myself probably 42,000 shots over the years, by the way, preparing to do the tapes, Jamie because whenever Jamie does film project, he does extensive background for it. And he gave me a book titled breakthrough about the discovery of insulin by Dr. Frederick Banting. And in fact, when I, I'm going to start to cry, because I read that book in two days. Because it just reminded me of how many kids died before Dr. BAMMY who's one of the greatest human beings that ever lived, discovered him. And it just, you know, I just brought back so much to me reading that book. But the man was a absolute saint for all that he did. I'm sorry for crying. But every time I think of that, man, I just think all of us were type ones are eternally grateful to him back, he's got to have one of the highest places and heaven.
Stacey Simms 9:10
It is incredible, you know, as we're marking 100 years of the discovery of insulin to think that someone such as yourself was diagnosed at a time really not that long after, at a time when many doctors and they still mess this up. But you didn't know the differences between the types. I'm curious, you know, I've heard other people talk about being diagnosed in the 40s and 50s. By medical professionals who kind of, you know, gave them really dire diagnosis or dire outcomes or would say, you know, you're really not gonna live that long. Were you I hear the emotion in your voice. Were you told things like that back then? No,
Jack Tierney 9:47
you know, that's, that's very interesting, because I remember Okay, for example, one of the doctors that I know just casually here in San Diego is Dr. Steve Adelman. And he too, is a type one diabetic. And I remember in paper he had written, he mentioned the fact that he was told that that he had he would live no more than 15 years. And he was diagnosed as a young adolescent. So I know that many people who were afflicted with type one word told, for example, one of my doctors is put me in touch with a two or three other type one diabetics here in San Diego who've had it for 60 years. And one of the women that I talked to she's now 70 and she was diagnosed at age 13. And again, the doctors told her that she would live no more than 15 years.
Stacey Simms 10:50
How did you then go forward? I mean, it sounds like you kind of alluded to it, you know, did the shots it wasn't that difficult, you know, again, the weight back but this was at a time before blood sugar meters. This was at a time where I assume if you were checking it wasn't very accurate. What were you doing?
Right back to Jack answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen . And our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvoke glucagon.com slash risk.
Now back to Jack answering my question about how he stayed healthy.
Jack Tierney 12:06
Well, I'll tell you one of the tapes that I did with Jamie was on exercise, I quickly realized how important exercise was I just felt intuitively that I would utilize insulin more effectively via exercise. And so as I mentioned on the tape, one day when I was 23 years old, I played 50 holes of golf carrying my own bag. And I used to routinely play basketball because I'm six foot four, three to four hours, sometimes even five or six at a time if I had the opportunity away from my academic studies. So I just found that exercise was so important. And you know, I've been as somewhat of an exercise buff all my life. In fact, one reason why I contacted Yahoo and diabetics the connections because on a news release here in San Diego, I saw where Eric Tozer was running eight different marathons on every continent in the US over a short period of time. Yeah. And he's a type one diabetic. So, in fact, on one of the tapes, I say, whenever I get when two people like Eric, I really follow their story, because it's motivational to me to maintain the exercise level that I like to
Stacey Simms 13:37
let me jump over to Jamie for a minute, as you're hearing your dad talk about, you know, playing 50 holes, and golf and basketball. Growing up. Was he super active? Was this a family thing? Did he make you all get involved? Or was this his thing?
Jamie Tierney 13:50
Oh, no, no, we I've been playing golf and my dad, before I can remember, I was about two years old. And, you know, I was thinking because the US Open was fishing yesterday. And he used to wake up at three in the morning and drive down there and get us a place in line to go play and then then come home and wake me up and take me back there. And then we play golf and maybe come back and do yard work stuff like that. So growing up, I never thought it was any different than anybody else's dad probably more probably quite a bit more active than most other dads I knew around.
Stacey Simms 14:25
Was diabetes kind of in the background, then do you remember as a kid, or you know, as a young adult at all? I'm trying to envision what it would be like because now you know with insulin pumps, we see gems, we see it more. But I'm curious, Jamie, from your perspective, what it was like to grow up with a dad with the type plan?
Jamie Tierney 14:42
Well, I don't always see him do the shots. And you know, I don't remember ever asking him what those were about that I just remember. I was near what it was that he had to take medicine he had to do it every single day and had to do with a needle which isn't fun for anybody. I remember a few times, you know when when we would We are playing golf specifically with hot that he bring like a candy bar with him in case he would start feeling a little woozy he would, you know, he would, he would eat something to kind of revive themselves from there was a couple times I remember when it got a little bit scarier than that where he needed, you know, he needed some assistance needed to get back to the clubhouse quickly to get back to normal. So I was always aware of that. But again, you know, I didn't really know that much about the disease itself and how it works. Other than if you've ever looked a little bit off, it needs to get some, some carbohydrates and and quickly,
Stacey Simms 15:36
Jack, I would imagine and I'm just thinking from my own experience, as a parent and as a daughter are our parents generally don't want us taking care of them. And we don't want our kids taking care of us when we become parents. But type 1 diabetes is kind of always there. Were you consciously trying to think, okay, I don't want Jamie to have this responsibility. I've got this, did that kind of stuff go through your mind?
Jack Tierney 15:58
No, you know, I just felt you know, it's an affliction. Everybody has ailments and afflictions. And, you know, once I realize how valuable and importance for my health, taking shots where it just became second nature to me, and I just felt so much better. But I just told my wife last night, since I've been on the T slim X to in last eight months, I've never felt better in my life, and I'm 81 years old. So I just am seeing the value of the pump, you know, and like Dr. McCallum says on the tape, he was a little surprised that I would take to it but you know, I always respect him so much. He just told me that this T slim is really something and I'm just so thankful I took the leap eight months ago and did it because I feel tremendous. Having done I do feel better now that I'm on the pump than I ever did just taking shots.
Stacey Simms 17:11
Now, what led you to do this? It was was it a conversation with your endocrinologist?
Jack Tierney 17:16
Yes. And and just also, he told me that this pump was exceptional in his point of view. In fact, Stacy, I'll say this to you, I just and so long story but I did talk with Dr. Aaron Kowalski today the president of jdrf in New York, and he told me he's using the T slim the Tandem t slim max to also so that made me feel really good. That maybe this is definitely it just reinforced by decision as being a very good one. Well hearing about this from Dr. Kowalski. Well,
Stacey Simms 17:56
I know Dr. Kowalski, but we chose it to and I gotta tell you, I absolutely love it for my son. It's just the software. It's great. So you were already then using a Dexcom CGM. Because if you're listening and not familiar, the Tandem system works with the Dexcom. Right. Are you using that together? And had you been using a CGM for a while?
Jack Tierney 18:16
Yes, in fact, that's a funny story. You're gonna love this story. What happened was about three years ago, I went to see Dr. McCallum and I wanted to get on a continuous glucose monitor. Because, you know, I'd seen it advertised and it just sounded like the cat's meow. So I'm waiting to see him. And there's a young man waiting to see another endocrinologist. And he says, Dr. Tierney, and I said what and what it was, it was a gentleman, a young man that whose first name is Brandon. And I saw Brandon when he was nine years old to help him get ready for a test to get into a highly academic private school here in San Diego. And he at the time, he told me he was a type one diabetic. And so what happened was he was using the Libre and went over all of the advantages to the Libre before I saw Dr. McCallum, so I walked into Dr. McCallum's office, and I said, Well, Dr. McCallum I think I've made a decision on the continuous glucose monitor that I should be using because I one of my former students told me the benefits up Wow, so I went on the Libre. But then, in fact, at the time that I went on the Libre, the Dexcom, six wasn't available, right. And so it just sounded like the best one for me at the time. But then, of course, eight months ago, when I made the decision to go on the T slim. They told me it was worked in concert with the Dexcom six and that's why of course I switch to that saying it's great to
Stacey Simms 19:58
Yeah, it's it's Wonderful to have these choices. You know, I was gonna ask you, right, I was gonna kind of ask you to take us through the process of going from, you know, no home blood sugar meter to kind of you know what it was like in the 80s. And then, you know, the different insolence, but you like rocketed ahead, and now you're on a hybrid closed loop system. So you've right, it's
Jack Tierney 20:20
so sad, you know, there was nothing available. Thinking back, I did a lot of research before I did the eight tapes that Jamie debts. And one of the things that I learned and I had read a little bit about that, because I read a lot about that diabetic compilations and controls study that was done in 1980s and early 1990s, with type ones. And you know, in fact, they abbreviated the study early because it showed that tight control of type one of your blood sugar is imperative. In fact, I think I in my research for those tapes, that study I think, yeah, it was called the DCC, diabetic comm closed stations control trials dcct. And that thing, that thing, I was concluded early, because it showed how important it was. And I think as a result of that the a one C was developed, and also kilmallock. Because before that I was using NPH, insulin from 1961 until the latter part of the 1990s when human log became available, and also, I got my first day one see back in the 1990s. Well, because that wasn't available. Until you know after that monumental study, the dcct. That's when the a one c came about, I believe. And also more synthetic insulins like human lock, right. And that helped me a lot getting on unilock it really good. But I didn't get on that till about I think 1998 1999 thanks to Dr. McCallum
Stacey Simms 22:13
What does he say to you? It's must be really interesting for him to talk to someone. I mean, my guess is that you educate him about many, many things as well. I'm curious. It just sounds like he's really open minded and really a team player with you to to encourage someone who has you know, not but on an insulin pump has lived with type one for more than 60 years. And then to make that change. Do you feel like maybe you're educating him as well? Oh, yeah, I
Jack Tierney 22:41
think it's mutual. Definitely. In fact, what happened was, Jamie said to me in mid March, he said, Dad, I'd like to interview Dr. McCallum. We've done the eight tapes. But like Jamie just said previously, I'd like to interview Dr. McCallum. So I called me and Jamie had to come down here on another job to San Diego from LA. And he wanted to do it on a Friday afternoon. Well, I called Dr. McCallum and he said, You know, I can't do as it's just chaotic once you guys come in Saturday morning, I couldn't believe he invited us in Saturday morning. We were the only one over there. And so I said to him, Well, can I sit in and listen, because Jamie interviewed him for an hour and a half. And I resist taking in his responses to all the questions, because you know, a lot of what he presented I had not heard before. And so it was just a very good education on my part to hear his responses to Jamie's questions. And also all along. He's been very respectful of my what I've learned. I'll give you one good example. And this is good to know, for every type one diabetic, sure, you got to pay attention to your endocrinologist, but also, you've got to pay attention to your experience. I remember when I first got on insulin back in the early 1960s that I was obsessive compulsive about making sure it was refrigerated. I mean, I was Oh, CD on it. I really was well, I'm reading a Life magazine. And this had to be in like 1963 about a gentleman by the name of Franklin, Billy Talbert. And Billy Calvert was one of the greatest tennis players ever. He was diagnosed in 1929. He lived to be 80 years old. In fact, that's one reason why I made the tapes. I said, Well, Billy made it to 80. Maybe my time is coming up. So I better do something that I've been contemplating doing for a while. But in that article back in the 60s, this is what Billy said, I'm playing tennis all over the world. I can't keep my insulin refrigerated all the time. And so I wasn't as I can, you know, you kind of learn by experience what you can do in the like, I mean, sure you take the advice of all of your doctors. But after that I wasn't obsessive compulsive about keeping my insulin refrigerated when I learned what Billy tailrace experience was. And that's what I found with Dr. McCallum he really paid attention to my experiences with this chronic illness. That's great.
Stacey Simms 25:28
Jamie, let me ask you, you know, you are a filmmaker, what do you hope happens with this video, I could ask you why you made it. I kind of have, you know, there's so many reasons why you would do something like this. But I'm curious to know, why did you do it?
Jamie Tierney 25:41
Well, I mean, my dad asked me to maybe not make exactly a film like this. But I just think it's an interesting story. I mean, when I when I got into it, I mean, the thing that kind of hit me the first thing that he survived for almost two years without insulin, yeah, I don't know how that happened, to be honest. And, and I tried to do some research. And I did ask the doctor, how many people have ever made it for that long, I don't think there's too many have forgot about it. He's my dad, but just from a human interest perspective, that someone could survive like that on a small amount of calories and no insulin with basically the pancreas not producing any more insulin at all. So that I feel like it's, it's pretty interesting, just the triumph of the human spirit, I think, and then having lived for, you know, 16 more years after that episode. And but then also, what's interesting to me is just how he's gone through every single phase of treatment. I know the first two treatments were began in the 20s. But it sounds to me like in the 60s, when he first started, it was basically a similar treatment to the 20. So it's pretty much gone through every single medical advance. And I just wonder, again, how many people are out there who are 81, who are getting started on something technologically advanced, like this pump and take into it? I feel like there's an interesting story there, too. I don't know how many people are are in his in his boat with that, too. Yeah. Can I piggyback a little bit? I'm going to tell you something. I haven't told too many people. As we said earlier, Jamie did fill eight scripts. Well, everything led to script number eight. And in script number eight, what happened was from 1992 to 1995, I was asked to be superintendent of the schools in a school district, that was the worst in the state out of 1000. And when that three year period finished, I believe, and maybe I don't think I'm off on this. It became the best school district in the state. And Jamie was getting his master's degree at USC, and screenwriting. And he said to me, dad, someday you have to tell this story. And I thought that was commendable on his part. In fact, he bought me a recorder. And so for a whole year, whenever I was driving, in my new assignment anywhere, which involved a lot of teacher training, I would record my thoughts. And when I finished, I recorded 55 hours of material. And I vowed to write three books. And I have written those three books on my experience there. And that is my ultimate reason for doing these tapes with Jamie helping me because I want to get a little bit of personal notoriety out there in hopes that a reputable publisher will publish my three books, because I think I've got a story. In fact, I told my wife and I just finished watching Downton Abbey because many of our friends thought it was so good. Well, I said to myself, after I watched Downton Abbey, my three books are an American Downton happy because it's a story that in fact, when I was contemplating doing when I started writing the three books of fellow Superintendent friend of mine said, Jack Tierney, he said, You beat me to it. When I retired, I was going to write a Michener light novel titled School District, because what really goes on behind the scenes in a school district has never been taught and what goes on in a border town. The story of what really goes on a border town has not really been told yet. And that is my ultimate person, poor person. I want these books, hopefully a reputable publisher rather than my working on self publishing, and maybe even three movies be made because I think it has the potential for that. And every month cent made will go to be find a cure for type 1 diabetes.
Stacey Simms 29:57
That's great. Well as we start to wrap this up, I'm curious to ask we on this podcast hear from a lot of adults who have been diagnosed with type one, I mean, sure, there's a lot of children as well, this audience is really half and half. And I'm curious, what would you say? What would you say to somebody you know, who was 60? Or 50? You know, who's not six years old? What would you talk about or tell somebody who's diagnosed as an adult?
Jack Tierney 30:21
Well, I probably would say the same thing. That I would say to someone who's diagnosed that like those four young men that I saw, for SAT prep, one of them was diagnosed at age three, the other two were re diagnosed at age seven. And then Brandon, who I mentioned earlier, nine, they have the ability and the courage to take this head on, you know, it is a chronic ailment, but with taking the advice of your endocrinologist and working at it, it is indeed manageable. I'll tell you what one one of the four young men told me when I met him for the first time, we finished the session on SAT prep. And I knew in advance that he was a type one diabetic, he actually had been diagnosed when he was seven. And he was now 16. And I said to him, I said, Well, probably in your lifetime, there will be a cure. And you know what he said to me? You're not going to believe what he said, Stacey, what did he say? He said, I wouldn't take it, huh? Because he had learned how to do it. And he had met this challenge. In fact, when he said that to me, I said, Jamie knows I've said this a lot. I think a lot of young people today, we don't have fixed rites of passage and societies too much anymore, where you did something notable. And the whole community recognized you as a aspiring adult. So young people are picking their own ways to prove to themselves the world and their families that they can stand on their own two feet. So I think that's why that young man made because he had his rite of passage thrust upon him. And he felt that he had successively done it. And so he didn't want to take him away necessarily. Yeah. Anyhow, that's my degree in philosophy. Coming to the fore here on why he responded the way he did, I've heard my dad tell versions of the story, my whole life, but it's, it's nice to have something that you can condense into 11 minutes and hopefully that people can get a sense of him, but also just how you can thrive and have a great life amidst the challenge of this disease. And as he says that, you know, hopefully, this this treatment is, is great, but hopefully there is a there is a cure someday and stories like harrowing stories of what my dad went through it in something. The future,
Stacey Simms 33:04
Jackie, so playing golf.
Jack Tierney 33:05
Oh, yeah. All right. Oh, yeah. I don't play that well, but I love to play. And what's best of all, I love playing with Jamie and his sister. In fact, every time we play, they're a lot better than I am. And they always give me a good tip. And that helps me to play a tad bit better. One of my neatest experiences as a father. In fact, the three of us, three of us always played on Father's Day. We don't now because Emily's in Cape Cod as being a doctor and Jamie's MLA. But whenever we did, when they were in elementary school in high school, it was one of my fondest memories on Father's Day.
Stacey Simms 33:51
Well, thank you so much for sharing your story. Jamie and Jack, I really I can't thank you both.
Jack Tierney 33:57
Give your best to your son, your 16 year old now. Just neat. He's doing so well. And what a champion he is.
Stacey Simms 34:06
Thank you very much. That means so much. And I appreciate you both coming on to share your story. And you know, we can learn so much from it. So thanks, guys. I really appreciate it.
You're listening to Diabetes Connections with Stacey Simms. More information about Jack and Jamie at Diabetes connections.com including the video with lots and lots of photos, Family Photos, if you'd like to take a look at that. I really appreciate them coming on. So much fun to hear that story and really reflect back and I love that you started using an insulin pump. Just last year, I have a friend who was diagnosed with type one in her late 60s and immediately went out and got the technology she wanted. A CGM right away hasn't started using an insulin pump yet she may never and that's okay but just knowing that the option is there. I think it doesn't matter what age, right? It's all about finding what works for you.
And if you're interested in learning more about people who have lived a long time with type one, like I said, at the very beginning of the show, I've talked to several people who've lived, you know, 60, or even 75 years with type one, Richard Vaughn comes to mind. But there are a couple of other people who've been on the show before. And I'll try to link that up in the show notes as well and kind of make a little list if you'd like to go back if you're new to the show, and want to hear more from these incredible pioneers in our community, a little bit more about in person connections and things like that.
But first Diabetes Connections is brought to you by Dexcom. And you know, a couple of weeks ago, we were watching TV, and I got a Dexcom alert, Benny was upstairs in his room, we were downstairs. And for some reason, it kind of took my brain back to the days when we basically had blood sugar checks on a timer, we would check during the finger stick the same times every day at home and at school, you know, whatever extra we needed to as well. But it's amazing to think about how much our diabetes management has changed with share and follow. I didn't have to stop the show to get up and check on him. I knew what was going on, I could decide whether I wanted to text him or you know, go upstairs and help him out. Using share and follow apps have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me, he loves that part too. And that's what's so great about the Dexcom system, I think for the caregiver, or the spouse or the friend, you can help the person with diabetes manage in the way that works for you know, their individual situation. Internet connectivity is required to access Dexcom follow separate follow app required, learn more, go to Diabetes connections.com and click on the Dexcom logo.
So tell me something good is usually where I share your good news. And hey, send me your stuff, Stacey at Diabetes, Connections calm or I'll post in the Facebook group Diabetes Connections va group, I'd love to hear the good things that are going on for you, you know, this summer, and as we head into August, let me know what's going on. But for me, the Tell me something good this month was friends for life. I didn't even realize how much I needed that until I was there. If you're not familiar, and I know many of you are joining me because you met me at that conference. But if you're not familiar, it is the largest diabetes conference in the country. This year, they made a joke. It's the largest one on the planet because it's like one of the only ones happening on earth this year. Usually it's almost 3000 people meeting up in Walt Disney World at the convention center there. It's gosh, it's so hot in Orlando in July, but it's always so worth it this year. I think it was about a third I want to say maybe 1000 people were there was a smaller event. But it was still fantastic speakers education a chance to meet the industry people touch insulin pumps, talk to vendors, things like that. There's a lot of stuff happening. And for the kids, you know, it's a chance to see and and adults too, it's a chance to see lots of other people wearing the technology that many feel self conscious about. And usually by the end of the week, and I met a family like this a shy seven year old who didn't want to meet anybody and was almost hiding in her hotel room was jumping in the pool by the end of the conference showing off her Dexcom and her insulin pump. So it's about empowering people with diabetes. It's about educating families. It's about support.
As I mentioned, last time, we had an episode I was gonna say last week, but it was two weeks ago. I mentioned a new presentation that I was doing reframe your diabetes parent brain. I thought that went really well. I was really thrilled with the crowd. really terrific people. And they did the presentation. I was always afraid of people gonna play along and give me their examples that everybody was great. So if you are interested, I'll do this on zoom. I'll come to your group. Welcome to your parent meetup. It doesn't have to be anything formal. It's really just about taking the terrible things we say to ourselves. I'm failing my child. I'm the worst Mom, I'm not doing as well as everybody else. How could I possibly have forgotten the blah blah blah. And reframing those thoughts to help us not only feel better, this isn't like a woowoo thing although there's nothing wrong with with changing the way you feel. But this is really actionable stuff about seeing how you are actually living so well with diabetes and you're doing a great job and your child is thriving right under your nose when sometimes you think everything is going wrong. So that was really fun. Sometimes it friends for life or new at the at a conference a couple weeks ago. Sometimes there's big announcements about new technology or you know, people will do presentations and show the new stuff. There really isn't anything like that this year. There's a lot of delays because of COVID. As you know, if you listen you know we are waiting for Omnipod five with Horizon, we are waiting for tandems boltless by phone, we are waiting for Dexcom to be submitted to submit g seven to the FDA. So there's a lot of things we're waiting on. But the community is always there. And I really really needed to see those other moms to hang out with everybody and just to breathe that air again. So thank you so much for everybody who came who said Hi, and who's listening. Now.
We also had a really, really great meetup in the Charlotte area and I only share this because you can do this where you live, even if you don't know anybody with diabetes, reach out to your local jdrf or post in some of these Facebook groups post in the Diabetes Connections group you never know maybe there's somebody who's local to you and start talking about let's get together. We had a fantastic meetup. It was parents and kids, and it was adults with type one. Our chapter has really gotten on the ball with adults, they have a whole volunteer outreach now for them. And you know, it's so cool to see people of all ages living well with diabetes, and we all help each other right? So I share that not just to say, isn't my chapter great, which it is shout out to my fabulous friend and Sutton, who makes that chapter home. But also just to spur you on to think about meetups in your own area. They're hard to organize, I do them too. And it's sometimes 20 people come sometimes two people come, but it is really worth it to keep putting it out there and keep trying to find parents, kids, adults in your area, we need our diabetes community, you only see your doctor for teeny weeny amounts of time, every couple of months. Diabetes is 24 seven. So reach out, find people post in the Diabetes Connections Facebook group, if you have questions, we can help you I do a whole presentation on making connections. So I can definitely give you tips and tricks, especially as we get closer to school starting about how to find other families in your area.
All right before I let you go, if you have listened for this long as you are listening to this episode, if you listen as it goes live, Benny knock on wood should be coming home from Israel today. As I am taping, it's still a couple of days away. But it will have been a month and I should be picking him up at the airport as this episode is airing. I am hoping that after he sleeps and showers, or sleeps for a couple of days, that he will do a debriefing on the show and talk to me about what it was like not just going to Israel with camp for a month. But what it was like doing all the diabetes stuff completely on his own. At this point. I don't really know a lot. I've seen his numbers. And I think I know what's going on. But I really want to hear it from him. So couple of days left, I can do it. Keep breathing. Oh my gosh, this has been so stressful. And I will share more with you all warts and all. I'll share the honest story, but not until he's back and home safe. All right.
Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening in the news every Wednesday live on Facebook at 430. And then we turn that around into a Friday podcast episode. Do not miss out in the news is like six or seven minutes. It's real quick. I'm trying to get it to five minutes, but I can't get it to five minutes. It's only six or seven minutes long. There's just so much good stuff happening and news to bring you from the diabetes community. So join me every Wednesday live for that or listen for the episode here. I will see you back here in just a couple of days. Until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Ernie Prado was diagnosed with type 1 as a teenager and is now a project engineer at NASA. He has a terrific story and it's not exactly what you'd expect. Ernie wasn't a diabetes superstar who lived a perfect diabetes life all along. We're so grateful he was generous enough to share the real story!
This is our first in a new series of "Classic Episodes." In addition to our regular Tuesday episodes, we'll bring you an additional episode like this every Thursday. What’s a classic episode? It’s an interview that aired a long time ago but isn't dated in a way that takes away from the experience. We’ve been around for a while, so there’s a good chance you missed some of these back in 2015 or 2016.
Stacey first spoke to Ernie Prado in 2016 and he's now the Project Engineer for something called the Super Guppy. He says it transports outsize spaceflight cargo in support of Artemis which will take the first woman and next man to the moon. Check it out here
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of digital stuff with quite a few laughs along the way.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:21
Welcome to a Classic episode of Diabetes Connections, something a little new this year. But as always, we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I am your host, Stacey Simms, and I am really glad that you are here.
So I said something new starting this week in 2021. In addition to our regular Tuesday episodes, I'm going to be bringing you an additional episode like this on Thursdays. So what is a classic episode, it is an interview that has already aired a long time ago, but it is still what we would call evergreen. It's not dated in a way that takes away from listening to it. Now we have a lot of episodes. We've been around for a while. So there is a good chance that you missed some of these interviews back in 2015, or 2016. And these are really interesting, fun people and I wanted to bring their stories to a wider audience.
This week, you are going to hear the story of a NASA engineer, a rocket scientist who lives with type one. Ernie Prado has a really great story. But it's not exactly what you would expect. He wasn't a diabetes superstar who lived a perfect diabetes life all along. And I'm really grateful that he was generous enough to share the real story you will hear from Ernie in just a moment.
But first, these classic episodes are brought to you by a brand new podcast. And this is pretty cool to have a sponsor who is also a podcast. So let me tell you all about this. This is inside the breakthrough. A new history of science podcast full of Did you know stuff like did you know Henry Ford and Thomas Edison were really good buddies. They even work together on an electric car, and it still failed. Episode One dives into stories including Archimedes yelling Eureka while naked in the streets and Alexander Fleming's discovery of penicillin by accident inside the breakthrough was created by SciMar SciMar is a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes.
This show is historical wisdom mixed with modern insight with quite a few laughs along the way. I've listened to it. It's a great show really high production value, great host and great information search for inside the breakthrough anywhere you listen to podcasts and at Diabetes connections.com.
It has been almost five years since I first spoke to Ernie. What is he doing now? He is the project engineer for something called the super Guppy. It sounds funny, but this thing is really amazing. I'll put a photo and a story behind it in the Diabetes Connections Facebook group, Ernie tells me it transports outsize spaceflight cargo in support of Artemis, which will take the first woman and next man to the moon. So pretty important job really interesting stuff. And I think as you listen to this interview, you'll see that Ernie is really where he wants to be. Please remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. So here is my interview with NASA's Ernie Prado from June of 2016.
Ernie, thank you so much for making some time to talk to me today. I really appreciate it. Yeah, before we get to the rocket science and NASA and everything that's going on now, take me back to the beginning you were diagnosed with Type One Diabetes at the age of 15. Did you know at that point, that you wanted to have some kind of career with the space program?
Ernie Prado 3:55
Oh, yeah. So my life goal, I guess when I was younger, I was always drawn to space and airplanes. And my mom said, I cry if I didn't watch Star Trek when I was like four. So I wanted to be an astronaut. And before that I wanted to be a fighter pilot and fly f 18. So I was always drawn towards this and my goal was to end up in space.
Stacey Simms 4:18
Well, you were diagnosed, as I said, age 15. The diagnosis was about, let's say 15 years ago, you're you're 29 you're 30
Ernie Prado 4:26
Yeah, it's half half my life now. Yeah. Um,
Stacey Simms 4:31
what did the doctor tell you at that point was that you have type one. And you're never going to do these things that you always wanted to do? Or was it a little bit more kind?
Ernie Prado 4:41
So actually, the past few months, I've been trying to figure out the exact date I was diagnosed just because, you know, I've been reading about folks and a lot of folks have a die of diversity. And I kind of was trying to figure out mine. And I've been thinking about that actually contacted the hospital. And unfortunately, I don't have the records. More, but I don't remember the doctor saying, you know, you're not gonna be able to do a lot of this. I feel like I've encountered more that, you know, outside of maybe the medical community. So I've been lucky enough to take part in a medical study from with FA and utmb about trying to get folks of chronic conditions like diabetes into space through companies like Virgin Galactic, and XCOR. And so I got to go into centrifuge. And that's pretty cool thing for diabetics to do. I did encounter some resistance when I was trying to become a flight controller. And so at the time, I had other projects coming up, so I kind of, you know, let that go to the wayside. But I haven't stopped me from doing most of the things I wanted to do. Maybe a few, but I try to find ways around it and still do them anyway.
Stacey Simms 5:52
Yeah, and I want to talk more about that. I'm just trying to kind of figure out what this was like for teenage you. Because that's a tough time anyway, and to be diagnosed at age 15. When you're hopefully, you know, you're busy with a lot of other things. Do you remember what it was like at that point in your life to make that kind of change?
Ernie Prado 6:10
Yeah, it was really hard, actually. So I came to accept that a lot more about the time I was 18. I was about three years after those first three years were a little bit difficult. Because, unfortunately, and you know, I love my mom to death, but she kind of told me not to talk about my diabetes, and to not let people know I had it. And over the years, I've realized that was a little bit, not probably not the best method to approach it. And so I dealt with it on my own a lot or just with support at home and from my family. You know,
Stacey Simms 6:44
I'm sorry to interrupt. I've heard that from other people that at, it seems like a better idea to try to avoid discrimination, ignorance by kind of just keeping it to yourself, is that maybe what your mother was trying to do?
Ernie Prado 6:59
I think so. And, you know, I think she did with the best intentions. But it was, it was really difficult to not talk about something that I considered So in general, about myself, because it was kind of thrust on me and said, hey, you're earning now you're diabetic, and, you know, it was through no fault of my own, it just happened. So it would be the same thing, as you know, having like a really strong interest in you know, like space, I wouldn't be able to hide that. I didn't want to hide the fact that I was out back. When I got to college, I started telling everybody and you know, I've continued that. But it was difficult, you know, to try to explain why I wasn't eating certain things around my friends, or why couldn't go out sometimes, or why I had to stop playing football and wrestling and all that. So it was a, I'd say it was a pretty good difficult time in my teenage years.
Stacey Simms 7:49
And you had to stop playing sports was that because of I'm gonna just guess, because your mom was not comfortable? Or was it something that happened?
Ernie Prado 7:57
Yeah, partly that. And my first doctor, I think, you know, in the abundance of caution said, you know, you might want to take it off for a little bit and learn about your diabetes and how to manage it. And it might have been understood as he shouldn't be playing sports anymore. But depressing. Yeah.
Stacey Simms 8:18
Well, okay, so you get to college. You're you. You're telling everybody you have diabetes, what you study in college, were you now going ahead with the engineering with the career in space program?
Ernie Prado 8:31
Yeah, absolutely. So when I got to college, actually declared my major before getting except for as soon as I got accepted, I believe. And I chose to pursue a double major in aeronautical sciences and engineering, and then mechanical engineering. Because I figured, you know, if maybe right now, I can't fly, or do what I want. I'm going to get involved somehow at NASA. And luckily enough, it ended working out. And I kept my majors throughout. And I tried to add a minor and do some pre med stuff, but I ran out of time and money, so I didn't get that.
Stacey Simms 9:03
And were you able to go to work for NASA right away? Where'd you go to work? Um,
Ernie Prado 9:08
so yeah, I was very fortunate. I began working at NASA as a co op at the age of 20. So it was my sophomore year in college, and I've been here since. So it's been about eight and a half a while on this cluster nine years. I've been out here. And so full time for about a little over five years now, though, for the first few years, I went between school and working here at Johnson Space Center. And I think in total of my college time was about a year and a half out here. So I really got my degrees in about three and a half years. Although I was in Davis for five years.
Stacey Simms 9:39
What was it like? And maybe this moment happened when you were as you said, you were 20 and you went to work there but you're still in college, or maybe it happened after? What was it like when you walked into NASA and realized I am going to be here, at least in this capacity.
Ernie Prado 9:55
So I'm kind of smiling like I believe right now. Remember that first day I mean, I'd never been to Johnson Space Center before, you know, being hired here. I've been at Kennedy Space Center with my dad, that was my graduation gift from high school, he took me there and in his big truck, and we tried to see a launch of, I believe, is STS 114, which was returned to fly and Stephen Robinson was going to launch that mission, which he was an Aggie from UC Davis. And that's where I was going to school. Then hurricane Ernesto roll through, me and my dad are both named Ernesto, and it hit a lightning tower. So they delayed the launch, and I didn't get to see it. But then, you know, a few years down the road, showing up here and saying, Man, I'm walking the same like ground, the astronauts have walked in flight controllers, and all these people in history. It was this really cool sense of I can't believe it. And I still kind of get that pretty often. It's a really cool job.
Stacey Simms 10:55
It's so amazing when you get to do the things you've always wanted to do. That's a great story. I love hearing that. I was reading an article that the writer and author Moira McCarthy wrote about you more has been on the show a couple of times already. And she talked about I guess you told her, there was a point at which you realize that, you know, diabetes was something that you needed to kind of pay more attention to, during your time at NASA. Can you tell me a little bit about that?
Ernie Prado 11:29
Yeah, so I guess that happened. Because I was working at the NBL, which is the Neutral Buoyancy Laboratory. It's our big environment for it was a gigantic pool, 6.2 million gallons. And it's the environment where we train astronauts at a spacewalk. Typically, if you're a co-op, in that building, you as a guest, at the end of your rotation, you get to dive in this big pool, which has a mock up of the space station in it. So it's this amazing, cool, cool thing to do. And my A1C was at 13.9. so incredibly high. I wasn't taking care of myself, just because I was stressed at school and more focused on getting good grades and kind of in a, I knew I had to diabetes, and I couldn't get rid of it. But I guess, and even though I told people, I wasn't accepting it, so my mindset was, well, you know, if I don't think about it, I don't have to deal with it. And that was a very poor mindset to have. So once they told me, Well, you know, your sugar is not controlled, you're not gonna be able to dive in this pool. I was, it was kind of a wake up call. And I was going to Well, that's a real bummer, because I don't know if I'll ever get to be here again. Or if I have this opportunity again. And so unfortunately, I didn't get to dive in the pool. But I had a very cool boss, he said, Well, you're still scuba certified. And although the medical folks won't sign off on you to do this, you can still snorkel the pool. So that's exactly what I did. I had my snorkel and I got to go about six feet deep in a 40 foot deep pool, I would have loved to sit on the floor and have my UC Davis flag. But, you know, I still got to hover above the mockups of the Space Station. And actually, there was two astronauts in there when I dove, I think it was Lincoln and Patrick, from STS 130. And I got to see them practicing for their spacewalk that they would do. And then later on, when I was back at school, I got to see them through the spacewalk in space, and I was going, I got to be in that tank with them. So I got I still got to experience it, luckily. But that was the point where not taking care of myself almost hindered something really cool that I could have done.
Stacey Simms 13:29
Okay, so I have a dumb question for you. They learn to spacewalk or they practice spacewalk in in a pool.
Ernie Prado 13:35
Yeah, so it's interesting, you want to think that you learn how to do space walking in a pool. When you're in orbit, you're in microgravity. And you're basically falling at the same rate as gravity, so you kind of just float. And so what the pools can simulate is the weightlessness. What it doesn't simulate is the resistance to movement. So in space, there is no atmosphere. So you can move very easily with very low friction. In comparison to work in a tank, you know, full of water, you have a lot of friction, when you try to move, it's kind of like when you extend your arm and try to swim in the pool. It's very difficult to do. So you can't simulate that, but the weightlessness portion you can. And they do that by attaching weights or foam on to the spaces that are in the pool, and you become neutrally buoyant, hence the name of the laboratory. So you don't sink in, you don't float just kind of hover there in one space and water. And so you actually can't even swim. If you can translate along the mock up or along the space station mock up with the hand rails on like you would on orbit. But if you need to go from one location to another, and you don't have anything to grab onto divers have to come and move you.
Stacey Simms 14:40
Wow. That's amazing. What made you decide Do you remember when you were younger? You said earlier your mom said you got upset if you couldn't watch Star Trek at age four. Okay, first of all next generation or original Star Trek? Very important question,
Ernie Prado 14:55
I believe, I think next generation but I like them all. Now. And when they come on, I will watch them. So I'm a big fan. Anything space related? And I'm in love with.
Stacey Simms 15:07
It's funny but but what would you remember what got you really excited about it as a kid? Was there anything you can think back on and say that, you know, you just really wanted to go into space? We were fascinated by the planets. I'm always curious what, what sparks a passion in someone?
Ernie Prado 15:23
So I feel like that's the hardest question to ask. And it's typically one of the ones that is asked, because it is an interesting thing. But you know, and you always hear the folk folk say, I just got the space bug, and it's kind of like this thing that just happens. So I do remember loving planets, loading stars, loving spaceships, is kind of everything about that. I'm not sure exactly what did I just think I was fascinated. There's one moment that kind of stands out to me, that was pretty neat. And it was this. eight and a half by 11, kind of photo of the first few shuttle astronauts are john young and Bob Crippen, and they were in their orange pumpkin suits. And I just remember looking at that, you know, at the time, I drew on the back and wrote my name, and like pink highlighter, and going, Wow, these folks are really cool. They get to go into space. And it didn't really dawn on me just how cool their job was, for some reason that picture always stands out in my mind. And then, you know, at 21, about a year after I started working here, I actually got to meet john young and shake his hand. Oh, wow. And, you know, so he was the commander of the first shuttle flight. But he also flew in Gemini, and then Apollo and he walked on the moon. So I shook the hand of a Moonwalker. And then that kind of like, is what threw me back to that memory of that of that picture going, whoa, that's really cool.
And, you know, I think my dad probably has something to do with it, because he was in love with the shuttle program. And he told me about, you know, driving loads in his truck over to, I think, Edwards Air Force Base and Palmdale when they were building enterprise, which was tested shuttle for kind of clarity, and never flew into space. But it did the approach and landing test, and he has pictures of it, you know, back before the real shuttle ever flew. And then I remember asking him, did you ever think you'd have a kid that worked for NASA? And he said, No. Probably some of his interest rubbed off on me.
Stacey Simms 17:15
That's great. You mentioned earlier, a couple of things I wanted to go through. You mentioned that you were in a centrifuge. Yeah. Tell me about that. What was that was that for testing. And I mean, that's just that's one of my nightmares, to be honest with you. So tell me all about that.
Ernie Prado 17:30
So that was a really awesome experience that happened about three years ago, the commercial space tourism industry is starting to come up, it's still very young, but they need to do your research on how a more average person will fare in the environment of elevated g loads and weightlessness. And so they need to gather data right now, you know, most of the folks that go up into space are I consider them superhuman, these people can take all kinds of abuse, and they're in peak physical health. But that's not everybody that would be interested in going in space. So as they start to open up this market, folks have back problem and lung issues and diabetes and heart problems. They want to understand how they will react to the forces and weightlessness and the stresses that it puts on their body. So one of my friends sent me a link that was saying that, you know, recruiting folks with these kind of conditions, to see how they will fare and I was like, amen. So I went and applied. And before even getting selected, they said, these are the weekends that you would come Are you available, I went and bought my tickets, before I was even approved. And so I showed up to the doctor for my physical, and he goes, Okay, well, you're good to go. And I said, often he goes, what we can do on goal is, like, already bought tickets, and the doctor just looked at me incredulously and goes, what you didn't know, you'd be if you'd be approved? And I said, Well, I love Southwest, because you can still use those funds towards another flight. He goes, Okay, well, you get to go on that weekend.
So I flew out to Pennsylvania, and it was the NASCAR facility. And this is like, a really incredible facility where they train pilots, you know, how to survive these incredible maneuvers that they perform, and jet aircraft and, you know, folks that are hoping to go to space and just training for a variety of things that includes stresses on the body. So they stuck me in this centrifuge. And I had another participant there with me, who was a former F15 pilot, which is just the coolest thing ever. And they subjected us to the flight profile of the XCore link and the Virgin Galactic spaceship two, or one I believe at the time. And so I think I peaked at about seven and a half G's for about 15 seconds or so. But you went through the profiles and got to see how it would be the experience of spaceflight. And so they put you through the asset and the decent, not so much the weightlessness portion, but it's very interesting to see just how much it affects you. My sugar levels were good, but I was so tired because you have to flex your entire body to prevent from blacking out and there's specialized breathing techniques to keep kind of pressure in the lungs and just to maintain how Consciousness. So luckily, I had a very experienced person there with me who taught me, you know, this is how you how you hold your breath, or this is how you flex all your muscles at once. And I did, they seem to think that I did very well. And it was a really cool enjoyable experience, and a video of it and pictures and probably something that I'll never forget, I was just so neat.
Stacey Simms 20:19
Were they very interested in your blood sugar particularly did they measure that throughout?
Ernie Prado 20:24
So I measured it before and after, you know, a few times during the day. I didn't have my CGM at the time, I didn't have it available to me. But I wasn't worrying because the needle kind of hurt a bit. It was one of the older ones, just painful. So I kind of was avoiding it. So I did the finger pricks. And yeah, my sugar levels maintained pretty well, they said, you know, keep a little bit higher than normal. So that way you don't tank and so I think I was staying around like the 170s or so. But it didn't affect me at all. And I think I was playing around going that this was the first instance of an insulin pump going through that kind of G load. And it probably should have told because
Stacey Simms 21:00
that was my next question. Did you do you worry your pump during
Ernie Prado 21:03
this? Yeah. And I didn't capitalize on it.
Stacey Simms 21:07
What kind of pump? Do you Where did you were at the time.
Ernie Prado 21:10
So at the time, I was wearing my Medtronic, and I think it was the 720 paradigm. And it performed pretty well. I mean, I still have the same pump right now it's lying on my counter, because I’ve switched to a Tslim. But it's survived it just fine. And it performed perfectly after that. And apparently during. So that actually would probably would have provided some really cool data to that team. And I just didn't make the connection at the time, unfortunately.
Stacey Simms 21:39
Well, you had other things to think about. And it's interesting that they didn't ask I mean, that's, you know, that's just one of those things where they're, they're studying people with diabetes. You know, I would assume they looked at all of that, but the upshot was that you were just pretty much really worn out.
Ernie Prado 21:51
Yeah, I was, it was, I was surprised how tired it was. Because I think throughout the it was two days, and I think throughout each day, maybe 15 to 30 minutes of that day, we're you know, the elevated g loads. And I went home and or to my hotel, and I just asked all those exhausted because you don't realize it but you're working out every single muscle in your body for that short timeframe. And it actually takes a lot of energy others. And you know, Bobby, the guys that said that you eventually get used to it, you know, once you're fighting jet, and you were a GC to help put pressure on your body, and it helps do some of that work for you. But we didn't have any of that equipment.
Stacey Simms 22:31
You talked very early on in the interview about flying about I think you said flying F18s. Is that something that you would like to be doing? Or is that something that you have done?
Ernie Prado 22:40
I've never gotten to fly an F18. So that's a military jet that the Navy uses, you know, as one of their fleet. And so that's like a dream of mine still at this point. But you know, I mean, even any other military jet would be incredible.
Stacey Simms 22:58
Do you fly? I mean, I dumb question. Are you do you have a pilot's license? Do you fly at all?
Ernie Prado 23:03
I don't. I've gotten some stick time before on several. What are they called? The word is escaping
Stacey Simms 23:12
like a simulator.
Ernie Prado 23:14
And then I've flown simulators I've even flown the shuttle simulator. That was a lot of fun. But, like so in college, or the stick time on a Cessna 152 or 172. So they're single engine, you know, planes basically. And so they're they're not advanced, like, you know, the jets that fly like that. So I've gotten to do that. I am fortunate cam and gotten a pilot's license just because a it's really expensive. It's several $1,000 that I just haven't had to put towards that. But eventually, I'd love to do it. You can get a a pilot's license, private pilot's license, there we go. That's what I was looking for. As a diabetic, you just have to show good control of your blood sugar for about six months prior and maintain that. So you can pass the class to physical. And you can also get I believe in experimental pilot's license, but you can't make money from flying as a diabetic, at least that I know of as a type one, because they're concerned with the liability of. And I believe the terms were subtle incapacitation, and sudden incapacitation. And if you have cargo or humans, you know that you're responsible for the really big risk. And so that's my understanding of why you can't do that. And same reason for the military, because then you'd be putting other folks at risk if you know if something happens to you.
Stacey Simms 24:32
And in what context, though, and I apologize because I wrote down, F18 that I don't remember we were talking about trying to get more good people with diabetes to be able to fly more.
Ernie Prado 24:44
Oh, so definitely F18 is just one of the planes that I really love the beautiful they're so over powerful and they're just, they're sleek, and they're so cool until the Navy flies over them on carriers, you know, and actually have a buddy or two that flying is just kind of jealous. But no. So as far as I know, you probably would not have a type one diabetic find those, especially, you know, they're just not available in the civilian world. And since we can't join the military at the moment, and probably for the foreseeable future, there's, you can probably fly backseat, you know, as a passenger, but not as the pilot. But you know, I do, there's apparently a stunt pilot that does fly, you know, his personal aircraft at AIR shows. And he performs some really amazing stunts. So we can fly is just, it's a limited set of aircraft.
Stacey Simms 25:36
And you want to be a flight controller, you said, what is what is that job is that one of the guys that sits where we see the movies, you know, see the Apollo movies, they're sitting in the, in the back home on the front of the computer? What is that?
Ernie Prado 25:49
Yeah, so that's kind of the image that's conjured up when flight controller is talking to. So we have, so shuttle, and ISS and Apollo and Mercury and Gemini, they've all had flight controllers. And basically, if I controller that helps monitor the systems onboard spacecraft, make sure that everything is going fine for the crew members try to keep them safe, address real time problem. So it's a whole host of responsibilities. And so there's an entire team that does this, and it's going 24 seven, so there's always somebody monitoring the spacecraft, and it's fine. And there's Capcom, which talks to the crew, there's a flight director who's responsible for the mission. One of the disciplines that I can talk about is also which is operations support officer. And that's the group that I was in. They are responsible for mechanisms, maintenance, and things of that nature. There's then there's other groups such as Prop, which is propulsion. And so they all have different responsibilities. And but yeah, so those folks have, you know, responsibility over the crew safety, and, you know, to help them perform science, when they're in space, and just help maintain that aircraft or spacecraft.
And one of the terms that they use to describe a flight controller is a steely eyed missile man. And it's a throwback back to the early days of flight when we actually put astronauts on modified ICBMs and shove them up into space. So, yeah, I was trying to do that. I was working halftime in that group and halftime at the space vehicle mock up facility, which is where I still work now. That's where we train astronauts for the inside of the space station, and I had a big project coming up. And at the same time, I was trying to see if I could become flight controller. And I encountered some resistance from the medical side, because they were concerned about, you know, my ability to handle the stresses. And so I did have support from upper management saying that if I had the technical knowledge and know how and competent that they would support me in trying to still become flight controller. But Tom had this really cool project to create the note three mock up, that was, you know, had a large budget, and it was high visibility and a long term schedule. So I kind of gravitated towards that. And it was really cool, because it culminated in me getting to brief the ISS program manager on this mock up, bill for the ability, and I never thought I get the, you know, speak to a person like that. So that was very cool for a person that only been around as a full timer for about two years.
Stacey Simms 28:31
Yeah, and that sounds pretty amazing. This is kind of a silly question. But it's in my head after I mentioned the Apollo 13. In the movies, we watch movies like that, can you walk, can you watch movies like that? I can,
Ernie Prado 28:42
and I enjoy them. And so actually, this is this one's pretty cool. And we saw the co op, you get to do a lot of neat things, visit the historical sites and talk to historical people are influential people. So we actually watched Apollo 13, in the Mission Control Room where Apollo 13 was controlled. Wow, that was one of the coolest things that I've done. And I took a picture of the console that I was sitting at, and that same wall, a replica of that console was in the movie on the screen. And so I was showing both of them on one picture, and I was going, this is cool. One thing that I tend to do is point out the errors about that, and my friends are like just enjoy the movie. But it's it's kind of fun. And it's a little bit of the you know, the nitpick Enos of actually what's going on and that's wrong, this is wrong. But the the movies are good at inspire folks, and they get them interested in space. And be there just enjoyable, you know, it's what got me interested in it in the first place. And without that, you know, you wouldn't interest other folks. So like, for instance, gravity, that movie was just beautifully done with the cinematography. I mean, it's just incredible. And it sucks you in but there was a few technical details or are lovable and that's not quite right. Right. But overall, they're really I love watching them.
Stacey Simms 30:03
That's great. You know, and when we think about the space program, and you've mentioned Gemini and Apollo in the beginning of the space shuttle, and that's when I was a kid, the space shuttle was what was new, and it was so exciting. And it seemed like a few years ago, that Americans might not be that excited about space anymore. You know, the funding was going down, and people weren't talking about it. And then you have things like Scott Kelly's year in space that he just returned from where he was tweeting all these pictures out and getting people interested again, and we have, you know, the the interest in Mars and different projects. Do you feel like it's on an upswing again?
Ernie Prado 30:35
Oh, yeah, definitely. And that's such a heartening thing. So I was lucky and got to work a little bit during the time of shuttle that got the Washington Actually, this is a really cool experience that I just remembered right now, because you were talking about how you were around, you know, during the beginning of shuttle in 1981, which is the first launch. And if you haven't heard the video, or seen the music video, actually, countdown by rush, I highly suggest it for anybody. They attended the first launch of the shuttle Columbia, and they put together this just amazing video that kind of makes my hair stand on that when I watch it, because it's just so cool. And it's like, it's just really powerful. And I got to watch the last shuttle launch, not in person to hear Johnson Space Center and Sony Williams, who's an astronaut was right there, kind of next to me and a few other folks. And you know, she was an astronaut that has flown on the shuttle, and it was just kind of really cool to see her emotions for the final flight of the program, when it was closed out. So that was that was a cool experience. And seeing the the, I guess, resurgence or like the increasing enthusiasm about what we're doing is just so cool. And, you know, we can go out and advertise for ourselves, we really just kind of rely on the science that we put out to benefit, you know, every day portions of our lives. And spin off that influence people. So you know, a lot of folks on being NASA influences them, or their lives.
But you know, a lot of the technology that's around it has some that NASA influence. And so you know, movies like The Martian, and the mission that we just did with Scott Kelly are so cool, and so, so essential to keep folks interested in what we're doing. So it really does, it makes you feel proud of the work that you do and makes you want to do it better. Because really everything we do is for the benefit of our country and just afford, you know, knowledge for humanity. And that's, that's our entire mission is to learn about where we are and what's out in the cosmos. And it's really great to see people, you know, start to feel great about that.
Stacey Simms 32:49
And when you talk about the things that come from the space program that are relatable, I mean, you know, it's kind of jokey like oh, Tang, but you know, all the things that we use in everyday life didn't the insulin pump wasn't that developed, I thought I read a while ago, that part of it was developed because of NASA.
Ernie Prado 33:07
So I'm gonna have to check my history on that, because I'm not exactly sure exactly how we have impacted that. But if you look at some of the broader history, not just insulin pumps, integrated circuits were influenced by, you know, NASA engineers and advancements in technology. And, you know, coding and signals and mechanics and all sorts of things. So in a broad way, I'm sure it was benefited Somehow,
Stacey Simms 33:36
I just, we took a tour of the we took a tour a couple years ago of the Kennedy Space Center. And I remember them saying that because we all went What? So I'll look that up. I'll fact check that before we put that Yeah,
Ernie Prado 33:48
I'd be very interested in learning more about that. That would be so cool. And I can't believe I haven't looked into it already. If I taught you something, I'd be so excited that you did
Stacey Simms 33:59
and say, Oh, you know, talk to a rocket scientist. Didn't know something I knew. But let's get back to diabetes. When if we could. How are you doing now? I mean, you mentioned you struggled when you were in college and as a young adult, are you? Do you feel like you have incorporated more into your everyday life? You do? Okay.
Ernie Prado 34:19
Yeah. So I actually, as soon as you asked that, I looked at my pump, and I'm currently at 119. And I've been in my perfect range here for see at least three hours, six hours, 12 hours ago had a little blip above 224 hours, I had a little blip about 250. So I'm doing pretty good. You
Stacey Simms 34:36
were nervous. You were nervous about talking to me. Oh,
Ernie Prado 34:39
not at all. I do manage it a lot better. My A1C is not perfect. It's not eight right now. My goal is to get it down to those 7.5. But you know, using the CGM and you know, actually, you know, checking my my sugar with pricking my finger, you know, four to five times a day. It does help. Sometimes it can be hard to get the point Five times, or five times to check it in one day, but you know, I try to make it a priority as it should be. And really not try to brush it off at all, you know, I'll be fine, because it really does have a huge impact on my life and so levina looking to do is get back to work and out if you went back out about a year ago, and it kind of delayed me in that process. So I've started to start to do that a little bit more. So that's helping, and, you know, trying to eat better, has also helped. And, you know, I, I don't really drink a lot of alcohol, which, you know, also does help keep the numbers controlled, though I'm doing much better than it was in college. Because there was one point where I didn't check my sugar for four months. And when I think about that, now I'm going What in the world was I thinking?
Unknown Speaker 35:51
Yeah, well, you know, I and
Stacey Simms 35:53
I asked that question not, and I appreciate you sharing numbers. And I always feel really nosy when that happens, but but it just sounds to me like somehow you've gotten from that college kid who didn't want to check it. All right. And I appreciate you saying that, too. Because that's reality that happens to somebody who's now really accepted this and and doing your best was what you got?
Ernie Prado 36:14
Yeah. And, you know, I figured it's not going anywhere. Am I still frustrated about it? And sometimes wonder, you know why this happened, of course. But, you know, I'm trying, you look at the positive aspect of it. And so actually, you know, like Sarah Sanders, and I had, luckily had a chance to meet her. And I read her book and talk to her about it. And her view on it was just so positive. And just, you know, a woman make the best of this, that it had a huge impact on me. And you know, I've been more accepting of it. In the past few years, I remember when I first got my pump I was all excited about us showed everybody. So being in control of it also helped me be a lot more accepting of it. You know, when it was my numbers were out of range. I didn't want to think about it. And I didn't want to talk and advocate and teach people but I was just like, kind of burned out. So it's actually kind of like this cyclical thing where the better control you take of it, the more accepting you are, and the more you want to educate and get, hopefully, influence other people that have to do the same. And I'm not sure exactly how that works. It seems to be a strange tie. But yeah, I just, you know, I probably talked too much about it now. I think, folks, okay, or you get it, but yeah, I think it's great. Yeah,
Stacey Simms 37:34
I just jump in and say for now, I should jump in and say Sierra Sandison, if you're not familiar with her is of course, Miss Idaho. She were insulin pump in the Miss America Pageant. I think it was two years ago, starting the show me your pump, social media movement, how did you meet her?
Ernie Prado 37:50
So she came down to the ADA convention in Houston. And, you know, I'd heard about her a few years ago, because of why she did wearing the pump on her, on her on her body when she was getting the pageant, and I was just thinking, that is so cool. You know, she's old enough, or, you know, being proud of, of being diabetic. And I guess I hadn't ever thought of it in that perspective. And I was just like, you know, I really kind of admire that that's so cool that she's, and you know, just a response how parents are like, you know, you help my kid feel like that it's okay to be diabetic. And thinking back to the early days, and I had it and where I was told kind of young, just don't talk about it. It was it was really just a nice feeling. That's good to have that kind of inspiration for other folks. And so I said, Well, I will buy your book, read it. I'm a little hyper sided. I want to talk to her just because she seems really cool. And so I talked to her for probably God, who knows half hour at least. And so we ended up being, you know, friends on Twitter, and all that stuff. And so she's been, you know, a really cool person to know. And, you know, just somebody that I kind of look up to just for being such a role model for diabetics, and raising advocacy for it and all that.
Stacey Simms 39:09
That's fantastic. I love hearing that. And we talked to Sierra last year on the podcast, and she's just, she's just terrific. And she's also you know, she's this it will see in her words, I think she's like a real math and science geek too. She's really cool that way.
Ernie Prado 39:24
Yeah, I think she's actually chosen to pursue engineering, which I was just like, Oh, that's awesome. Yeah. If you ever need any help with with yourself or college, let me know. Because, like, I mean, you know, you got the common thing of diabetes that then you know, whenever I meet an engineer, I'm like, Hey, cool, you know, the pain in college, you've been through it. So I always like to encourage more engineers and get them into the into the STEM fields just you know, cuz we need that talent. And it's really cool to see folks be passionate about the stuff that dorks like, like myself, you know, like math and science, chemistry and all that. So Yo, it's awesome. We need more dorks.
Stacey Simms 40:03
All right, so what's next for you? What's next for you at NASA? What are you doing now? Where would you like to be in a few years?
Ernie Prado 40:11
So that's always kind of a hard question for me to answer.
Stacey Simms 40:15
I feel like it's a job interview. I didn't mean to phrase it like, yeah,
Ernie Prado 40:17
oh, no, it's okay. It's the way I think of it. I'm the type of person that kind of sets a goal. I don't know how in the world, I'm going to get there. But somehow I tried to chart my path. And so it seemed to work out in several instances for me, so I keep taking that approach. Currently, I'm a market manager, project manager at the svms. And so I lead technical projects to build mock ups, improve them, upgrade them to approve engineering activities and training activities, I lead with outside companies, other centers, divisions, and directorates. So it's kind of this big catch, catch all integration job. And I get to meet a lot of cool, interesting people and, you know, still get to use my technical background for projects, but also get to learn about the management side of the house. So you know, dealing with budgets, and, you know, managing a project. So that was something I didn't learn in school, and it's a cool skill to learn.
And, you know, the first few years, it was a trial by fire because I had no idea what I was doing, I was in the technical background. So currently, I've been involved in an agency project about how to apply models, a systems engineering, to the projects that we're doing. And it's an approach that kind of takes a consolidated view of projects, including cost development, schedule, requirements, activities, you name it, everything goes into one single source of truth. So that that's a neat project. And it will be reported to the agency headquarters here, by the end of the year, I really don't know where I see myself at though, I know, I'd like to continue here. And just keep being involved. And, you know, giving my small contribution to, to what I think is man's greatest mankind's greatest endeavor, you know, it's just an honor to be here and contribute to something. So I think scran and you're working amongst these, you know, so many folks that have a passion for what we do, and just they're so bright and talented. And, you know, I consider myself an average person here at you know, because there's so many bright folks out here. So, like I said, it's a hard question, eventually, if I can try to fly some knowledge base on down, and I will try to do that. I can. That's one of my goals. Right now. I don't know how it's gonna be achieved. But you know, I'm gonna work towards it. Yeah.
Stacey Simms 42:37
Let me ask you one more diabetes question. Ah, there are a phrase this, what would you say to somebody, maybe a 15 year old kid, maybe somebody older who's diagnosed with type one and is told, I'm sorry, but the dream you had, is not going to work out? At least not now. You are so positive about things. I'm curious, you know, how do you get past that? And what would you advise somebody else to think about if they're told, I'm sorry, but you just can't,
Ernie Prado 43:04
because of diabetes. So I'd say you know, at first, it's a little bit of a blow. Because some, it's something that's out of your control. So one of my friends who's a pilot said, you know, you'd be a shoo in, in the Air Force to be a pilot, because of your technical background, it sucks that you can't do it, because you're diabetic. And I was just like, I remember going. That's depressing. Um, but, you know, there, I think there are realistically some things that we probably can't do. And realistically, there's others that, you know, we're just told we can't, but we absolutely can. And so I would say, you know, fight an uphill battle, don't give up and try every single Avenue available, to try to do what you want to do. Because more than likely, there will be a way that you can find, and without folks, you know, kind of Blazing those trails. It's not going to happen. And, you know, I know, it's not the same thing. But going back to 1980, there were only male astronauts, and they used to tell women, you know, don't bother applying, you're not going to get selected. And now we have a number of female astronauts. And in fact, you have commanders like Eileen Collins, who was an incredible person to have in our astronaut corps, Peggy Whitson and, you know, Sally Ride and just a number of these very influential people that were told, you know, don't apply it. Why even try and you know, they forged the path. And because of them, now, other people are able to do that same thing with African Americans like Guy blueford and make Jameson. You know, they were astronauts, and in the earlier days, you know, they weren't selected. So I think that without butting your head against the current limitations, don't never, you know, what we can do will never be expanded. So fight the good fight. as cliche as that sounds.
Stacey Simms 44:57
That's a great answer. I love it. So thank you so much for joining me today. I'd love to check in with you periodically and see how you're doing. And it's just, it's such a cool story, and I really appreciate you spending some time with me.
Ernie Prado 45:10
Oh, absolutely. I appreciate you. Thank you for speaking to me. It's kind of cool to talk about some things I've forgotten and every day. Yeah, absolute pleasure. And I appreciate you know, the invitation.
Unknown Speaker 45:27
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 45:33
I will link up more information about where he is today. You can always find out more at Diabetes connections.com. I will of course include information about the super Guppy which is the project he is currently working on. He's the project engineer there. I'm trying to remember the last time I saw him you know, it's it's funny these days trying to remember when you saw anybody because of course, all of 2020 we saw nobody but I saw him at a friend's for life conference, I want to say two years ago, and I'm bringing it up because it's a little embarrassing. The last time I saw Ernie, he was chasing me down because I forgot my phone. I left it with him. And my phone also has my wallet in it. I have one of those cases where it's got my license, you know, my credit cards, all that stuff. And I hadn't even noticed it was gone. And then all of a sudden here he is running up.
Stacey Simms 46:18
Oh my gosh, so embarrassing. But thank you. He's just a Boy Scout, in addition to being a rocket scientist, and I do appreciate you. He's also been really great to Benny. He met Benny This is a different time. But another friends for life conference. It had to be four years ago helped me out people when it was at the Marriott maybe it was five years ago now. I'd have to look that up. But it was it was the year of the Irish dancers. Oh, my goodness. But anyway, we sat down with Ernie and we were just talking and introducing and Benny absolutely adores him and was eating this enormous dessert. I know Ernie remembers this because his eyes are so wide. It's like you're letting them eat this. But then Benny was going swimming. It was night he was doing this nighttime swim with some friends of his and they're having a really good time. And you know, you kind of need to carp up before you jump in the pool. And I was so excited to show him the next day to show Ernie that he was like 100 all night long after eating this enormous dessert. It's funny after during the show for so long, how I've become friendly with so many of you as you listen and as your guests and man that's so rewarding to me.
All right. Remember, Tuesday is our regular scheduled episode all this year. Tuesday will be the regular interview episodes with all the segments and info that we do. And on Thursdays I will have these classic episodes where we take a look back didn't expect to reminisce there at the end. But you know, as we look back on the last couple of years, that is bound to happen. So let me know what you think. I always like to hear from you. big thank you to John Bukenas from audio editing solutions. My editor who is great about taking on new projects like this, I appreciate you john.
Stacey Simms 47:43
Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
The Medtronic 770G pump was released in the United States just a few weeks ago and Robe Howe is one of the first to use it. Rob shares his first impressions and tells us what he'd really like to see in pump technology. (Rob is a paid ambassador for Medtronic, but they did not clear or review his comments for this interview).
Rob & Stacey spend a lot of this episode on other issues, talking about whether people with type 1 are "disabled" and what it means to use that word. Rob talks about achievement bias (and explains what that involves) and a lot more. We also find out about his fun modeling gig with Express and about his COVID-adjusted wedding in 2020.
Previous episodes about Medtronic here, including our in-depth discussion about the 770G and what else is on tap.
In Tell Me Something Good – legislative action, a diabetes blog gets a shout out and a new tip makes a difference for a site location.
And Stacey makes her predictions for 2021.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Tell me something good links:
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Unknown Speaker 0:22
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28
This week, Rob Howe is one of the first people in the US to use the new Medtronic 770Gpump. We'll talk about that. But our conversation got a lot more personal, including a discussion about whether most people with diabetes consider themselves disabled and everything that goes along with using that word.
Unknown Speaker 0:47
I want to say like I Rob Howe, professional athlete, the guy who's goes and speaks and is like, you can do whatever you want. I identify as disabled, I am disabled, I have a disability. That doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just gonna quit and be like, you know, sayonara team
Stacey Simms 1:01
Rob is also a podcaster. And he turned a few questions around on me, we went a few places I wasn't expecting, including my hard “no” stance on Disney guest passes from years ago, and a lot more. And we do talk a lot about the 770G as well.
In Tell me something good legislative action, a diabetes blog gets a shout out and a new tip makes a big difference for site location. Plus, at the very end of the show, I'm going to do my predictions for diabetes in 2021, technology, community, and more.
Stacey Simms 1:32
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome back to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with Type 1 14 years ago, my husband lives with type two, I don't have any type of diabetes. I'm the broadcaster. And that is how you get the podcast.
I released an episode on New Year's Day about the COVID vaccine. And we've had a big response to that the episode was about health care providers with type one who had received the very first batches some of the first people in the US to get that first of two COVID shots. But the response was mostly people wanting to know where they fall in the priority order for receiving it.
Dr. Ponder Dr. Steven Ponder was in that episode. And he's an endocrinologist in Texas. He had been trying to get Texas to allow type one into the higher tier. But it looks like this is going to vary state to state, I would urge you to jump into our Facebook group. It's Diabetes Connections, the group and I'm just start a thread. Let's try to get everybody up to speed whatever state you're in, link up the health department look up a news story that you know of let us know what's happening where you live.
Here in North Carolina, they're talking about chronic conditions for one of the phases but it's not clear if it's just type two with type one will be included. As Dr. Ponder said, How are they going to check? Right? Do we really want the people giving the vaccines to have to worry about you know, give me your paperwork or your type two type one. Where's your doctor's note? I mean, it's already so much less efficient than we all had hoped. I do think they are making good progress. As I'm taping this at the end of the first week of January. Here in North Carolina, where I live, they have announced that they will be using the National Guard to help out which I think is terrific. And as I mentioned with a husband who's got type two, with my 16 year old who has type one who is eligible for the vaccine, we are going to watch closely to see when it is our turn. But again, I'm hoping we can get a big Clearinghouse going in the Facebook group with information with sourced information about when and where the vaccine will be available, where you live.
My talk with Rob Howe about Medtronic and this talk really did turn into something more. It's not a typical interview for the show. I think we'll get to that in just a moment. But first Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us. It really kind of annoys me and Benny, it's not really the big picture stuff, right? It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management and with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to My Dario dot com forward slash Diabetes Connections.
My guest this week has been on the show before with a very different focus. Rob Howe joined me two years ago to talk about so called Walmart insulin which he used for a while as kind of an experiment if you want to hear how it went. I will link up that episode from 2018. Just go to Diabetes connections.com click on this episode or the show notes wherever you're listening We have a pretty robust search on the website as well if you prefer to search it that way.
Rob is the host of the podcast, diabetics doing things. He is a former Washington Generals player. That's right. He's the bad guy. He was on the bad guy team against the world-famous Harlem Globetrotters. And this year, Rob became a model in a very cool campaign for Express and he got married. So Rob has a lot going on. And we've talked about quite a bit of it here.
There is also a video of this interview over on our YouTube channel on Diabetes Connections over on YouTube, if you prefer to watch it's kind of fun to be doing more video interviews, let me know what you think about that. In addition to the audio, Rob is a brand ambassador for Medtronic, and he started using their newest pump, the 770G in December, we talked about that, and then had a conversation about everything from the word disability to why I never got Benny, a guest assistance pass at Disney. In fact, I put my foot down and said no to what he calls achievement culture within the diabetes community.
Always great to catch up with Rob how from diabetics doing things, podcasts, and so many other things in the diabetes community. You become the go to emcee, I see you all over the place at virtual events. Thanks for jumping on. It's great to talk to you again.
Rob Howe 6:13
Yeah, thanks so much for having me. I've become what I call, and literally no one else says this except me. I'm the host with the most Insulet on board. So yeah.
Stacey Simms 6:23
Oh, I'm gonna steal that the next time I introduce you, I'll make sure to say that please
Rob Howe 6:26
Rob Howe 6:28
I love it. Well,
Stacey Simms 6:30
listen, we've got a lot to talk about today, I want to start off by just jumping in because the latest thing for you really has been not a change of technology. You've been a Medtronic guy for a long time. But you've got the latest version of Medtronic pump. So tell me, when did you start using the 770?
Rob Howe 6:49
Yeah, so I am very fortunate. I've worked with Medtronic for a long time. And I've been a patient of Medtronic for even longer. So today, as of recording, it's December 16. And I think I've been on the Medtronic 770Gnow since December 1, right around there. So it was in the first wave of of Medtronic, folks, employees Ambassador group to get access to the new pump. And it's exciting. I mean, I think for me, I've been on the 670 g now for almost three years. So you know, one of the criticisms of the new pump is that it really isn't very different, in turn from a technological standpoint, except it does have what we've always been very critical. And I mean, we as the diabetes, greater community of the 670 was that there was no Bluetooth connectivity to the phone. So I think this is Medtronic response to say, Hey, we hear you we got to have Bluetooth connectivity. And it's great. It actually, the app is super intuitive, the mini med mobile app and it has your basically your sensor glucose like you would normally see on your pump display, but it also has your 24 hour time and range. So just a quick little swipe, you can get over there and see your your 24 hour numbers, which is kind of nice, especially if you've had a really good day, you can see that you know those high time and range numbers. So it's exciting. And you know, I think for people who are, you know, really into the nitty gritty, it's also a new transmitter for the sensors. So it's still the Guardian three sensor, but a new GL three transmitter, which just has a few of the, you know, annoying, calibration tweaks that some people have, I think more vocal people than I have have, for sure lamented. So the the new transmitter is excellent and has fixed a lot of the challenges from the early days.
Stacey Simms 8:26
We talked to Medtronic a couple of weeks ago, and I'll link up that episode in the show notes here to go through all of the features and what's coming next. But it really is interesting how so often these companies and it's not just Medtronic, I would kind of compare it to Omnipod dash right so they have one version, then they almost have a stop gap, which has some improvements but isn't the big shiny thing that we're waiting for you know the if you're looking at the technology so carefully, which will be the 780 which is out in Europe and will be out soon. But you know, I have heard a couple of people who have used Medtronic for a long time like you have say the phone stuff would be nice but I don't really need it. And now that you have it, you really look at it more i mean i don't have diabetes and so I'm trying to get myself from following Benny so often to not looking at it 24 seven, but was it really that different for you to kind of just look at your phone more than your pump
Rob Howe 9:15
right now. I'm operating mostly from home so there isn't a you know, work meeting where I would feel better about pulling the phone out versus taking the pump out of my you know, pocket and I am an insulin pump in the pocket person so I don't wear like a holster or anything like that. And obviously Medtronic pumps have tubing, but I think it's nice to just be able to you know, you're on the phone all day all day. Anyway, I'll admit I spend a lot of time on my phone and being able to click over in the night. You know, I think that's been the time that I've used the app the most when you know in when I'm laying in bed,
Stacey Simms 9:47
I think it's huge to have it on the phone. My kid is a pump in the pocket kid too. And he would never look at it. If he didn't have to. He's on the phone and it would you say maybe a couple of directions. He it would be really a big deal. If he suddenly lost that which he hasn't even had for that long, right? Well, anyway, you get used to.
Rob Howe 10:04
Exactly. And I think that's where I think as consumers, and this is sort of my you know, before getting more and learning more about what goes into diabetes technology from a FDA approval standpoint, and all of the sort of hurdles that they have to go through, you know, I was sitting there streaming a movie on my iPhone on an airplane, and I'm like, wow, if I can stream a movie on my iPhone on an airplane, we for sure should be able to look at your blood sugar numbers on a phone. But I'm very much like Benny, I love the phone, very familiar with the interface, I use it quite a bit. So I think, you know, in terms of having that convenience, it's just so nice. It's kind of just takes away, you know, I think Medtronic has really done a nice job in past years. And also going forward of really relieving that mental burden and making diabetes integrated into your life. And this is definitely something that makes diabetes just more integrated in the way that you already use technology, the way that you're already on your phone. And I can get a push notification. Now my alert on high if I'm, you know, I got my high alert set at 160 get the alert on high, it pops up in my phone, just like a normal notification. And I can take care of it then. So yeah, I really love it. And I think that's kind of like what you said with Benny, you get really used to it really quickly of having it there and having those numbers all the time. So it's just nice to have it a little bit more integrated into our everyday life.
Stacey Simms 11:15
Are you a big auto mode guy? Do you use the features of the 670. And now the 770
Rob Howe 11:21
I am I stay in auto mode. I'm a big auto mode guy. And I think the criticisms that I see of it online are fair, and it's not perfect. And I think Medtronic has done a great job of talking about those, you know, initially, this was like 1.0 of the hybrid closed loop systems, you know, so the algorithm is now in technology world is a little dated. But now, like you said, mentioned 780 coming soon, in the US. You know, the next version of that, I think is really exciting. But for me, I'm an auto mode guy. And I think the the biggest example I'll give for listeners is I love to play golf, I have a weekly golf round that I play on Sunday mornings, and I set it on auto mode. And before auto mode, I would go out and you know, my basil would be what it was and I have to set a temp target or attempt basil and you know, even before cgms I just basically have to have gummy bears stashed in my golf bag. And on auto mode. Thankfully, you know, I go in with no insulin on board in the morning if my morning starts off really smooth. And I can go through my entire round walking or in the cart and not have to worry about correcting and not have to worry about high so it's it's really nice. I love auto mode. That Blue Shield gives me a lot of confidence.
Stacey Simms 12:25
That's awesome. It's funny though, looking at as we're recording this on video I can see into your house is basketball stuff all over the place. Now I know you're big basketball player. We've talked about that we talked in the past. So I'm interested that you brought up golf and rather than basketball.
Rob Howe 12:38
Well, you know, I'm aging gracefully, Stacy. Like, you know, I think I still love playing basketball. And I think that's one thing that sentimentally I think there's been so many terrible things that have been taken from us because of COVID. And the thing that's been really eating away at my heart, and my soul is not being able to play basketball and because it's just not safe. And I think in Dallas, especially we have so many cases and I've been able to do some training in a gym, by myself wearing a mask, but I just missed competing and I think golf, you know, you're competing against yourself. So it kind of scratches my itch a little bit. So that's been my COVID pivot.
Stacey Simms 13:14
That's awesome. I've been playing golf since I was 22. So I'll take you out sometime when we got
Rob Howe 13:18
ready to say no more. I'm ready.
Stacey Simms 13:22
You know, one of the things that really made me smile in the last couple of weeks was that terrific video you posted. Your it was it was announcing the partnership you have with Medtronic now but the video itself was so great. It was you know, if you haven't seen it, we'll link it up. How would you describe that like an athlete grabbing a sponsorship or getting recruited for a team?
Rob Howe 13:42
Yeah, you know, I, I was stuck on this concept of signing day. And this announcement, this announcement kind of felt like that. And for me, you know, I've worked with Medtronic for a number of years as an ambassador as a consultant. And now kind of deepening that partnership into a more formal role. It just came to mind. And I thought, you know, this is true to who I am as an athlete, and seems like a fun way for and you know, that's a big part of what we're working on together is doing some outside the box, maybe not traditional Medtronic type announcements. And I would classify this as sort of in that realm. And I'm just very fortunate that my team and Medtronic is so on board with hearing sort of outside the box ideas. And so getting to produce this fake press conference about my signing day and learning that there are no Medtronic hats and having to get a Medtronic hat made for me to put on so now I have like the one on one of one Medtronic cat, which I love. It was really cool. And the response was great. And again, I just I'm glad that my team didn't roll their eyes at the pitch. They were like, Oh, yeah, this actually sounds great. We'll we'll do this. And I can only imagine as it went through legal what legal was thinking of just reviewing that video, so very fun. That is funny. I
Stacey Simms 14:48
think I have one of the remaining animus shirts left in existence from what I used to do appearances for them.
Rob Howe 14:54
Yeah, you gotta gotta save that merge. It's like it's retro. You know?
Rob Howe 14:57
That's really funny.
Stacey Simms 15:04
Right back to Robin just a moment, but first Diabetes Connections is brought to you by g Volk, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Jeeva kaipa pen comes in. It's the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give GMO correctly. I'm so glad to have something new, find out more, go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma visit g VOCA glucagon comm slash risk. Now back to rob, and he is talking about new technology that he's looking forward to.
Rob Howe 15:52
I'm very excited about the integration of the phone as the software back end to the pumps and the devices. I think that adding diabetes technology to the Internet of Things is a huge milestone in healthcare. It's a huge milestone for people with diabetes. And it's just going to make this whole user experience more intuitive. I think the DIY loop community has shown how you know how powerful it can be when technology and people helping each other and really dialing in features that they need and that are important. And working with some of these larger manufacturers, I think kind of opened up this Pandora's box of questions for these bigger companies to ask themselves are our technologies right for our customers, are we meeting them where they are, and I'm sure as you encountered in your conversations with Medtronic, that's a big focus for them right now is meeting patients with diabetes where they are. So you know, you've seen this year now the acquisition of companion medical, to bring multiple daily injections into the Medtronic suite, which previously they were a pump company. And I think now they're really focusing themselves on being a diabetes technology company, which is cool. And I think it's good for patients good for Medtronic good all around?
Stacey Simms 17:01
Well, it's interesting, because for years, people were saying, you know, this stuff's got to look better, you live with it, it's on your body, you want it to look less like a medical device. And there was a lot of pushback from people within the community, as well as on the technical side, who were saying who cares, just make it work better. And I think we are at a place now at a point now where there is enough, even though there seems to be fewer pump companies, there's enough competition, that they do have to look good, they do have to feel better. I mean, I don't remember what you used when you were first diagnosed, but it's changed a lot in the Gosh, in the almost 14 years I've been he's been using an insulin pump, it's not a brick anymore.
Rob Howe 17:35
Right, it doesn't have a Gameboy screen, it doesn't look like a calculator, you know, I think all that really comes down to me is just user experience in general. And you look at iPhone, for example, and the transformative qualities that that piece of technology has had on society in general. And I think that that is sort of the the gold standard now and that filters down to healthcare companies, something that we talked about in my agency world is that, you know, most people, when they think of competition, they think of, you know, immediately in their industry, their top two or three competitors. for consumers, they don't look at it necessarily that way, they're looking at you online as your competition is Apple, and Chase, and Amazon. And if your online experience, if your device experience doesn't mirror those, and isn't on par with those companies, which is really unfair for a lot of businesses, a lot of brands, because they're they don't have the ability that or the scale or the infrastructure to deploy at that level. But if you're not on par with those companies, users will tune out, they're looking for best in class. So I think that's been a big shift for all the major diabetes technology companies, and I think outside of diabetes as well.
Stacey Simms 18:40
Alright, let's move on just one of those other issues, you and I saw a conversation online that we wanted to talk about, I think this was mostly on Twitter, where the word disabled or disability, it's interesting when using that with diabetes, because Ben, he was diagnosed before he was two. And all I heard for this first few years was he can do anything, it's not going to stop him. But then you get to school. And it's like, he needs a 504 plan because he has a disability. And he's covered. I have my own take on it. And I'm curious what you think is the person who lives with diabetes? Is that a bad word for you?
Rob Howe 19:11
You know, that's really interesting. I seen that conversation. I think I want first of all people to know that I see both sides. I think I see people who argue on one side or the other. I you are seeing and I think for me, it's very similar to your story of Benny, you know, I was told from the get go from the jump that whatever dreams you have for your life are still within reach. I have perpetuated that idea at the beginning of all of my talks, all of my messaging, I believe I'm living proof that you can do things with diabetes if you want to and take care of yourself. I mean, there's other factors involved, obviously, but at the same time, I think denying the fact that you're disabled denies all the hard work that you put into your life to stay alive every day. And let's be honest, I think none of us would put the amount of work mental, physical, financial into anything else that we put into diabetes without compensation, expected compensation or some sort of like just reward you know, and I think that's really where it nails home for me is like if you factually like scientifically, under the Americans with Disabilities Act or the ADA, people with diabetes have a disability. That doesn't mean that you can't do the things that you want to do. But it also doesn't mean that you're not disabled. And what really reinforced this for me was a few months ago, there is a documentary on Netflix called Pistorius, which is about Oscar Pistorius, the Olympian who was born with defects in his legs, and he runs on the Nike blades, the legs that that allow disabled runners to run. And he competed not only in the in the Paralympic Games, but also against non disabled athletes. But in this documentary, and obviously, tragically, he murdered his girlfriend, killed his girlfriend, and you know, is on permanent house arrest, I believe it was so interesting to see the rhetoric by which he referred to his situation, his disability, and he's like, I don't identify as disabled. And that was something that I think, in the early years of my life with diabetes, when I was a younger man, less gray hair. But I identified with that I was like, I don't want people to treat me differently, I want to show them that I can do this. But when you deny that disability, again, when you when you close yourself off from things like diabetes community, when you close yourself off from benefits, like your 504, when you close yourself off to identifying as disabled or taking advantage, God forbid, you don't take advantage of the concessions that have been granted to you because of the struggle and the burden that you're carrying because of this disease. You know, I think you close yourself off to all the work that you're doing. And that's really where I want people to know that like, hey, yeah, I at face value, am a fit, athletics, successful, quote, unquote, successful person with diabetes, but I very much identify with Own your disability, that doesn't make you and I think there's a lot of conversations about ableism that I think we as a culture need to do better about because I think you alienate people who are disabled by saying, Well, I'm not I don't identify as disabled or I have a disability, but I'm not disabled, I think those are our negative, you know, negatively affect people who you know, really identify as disabled. So I want to say like, I Rob, how professional athlete, you know, the guy who goes and speaks and it's like, you can do whatever you want, I identify as disabled, I am disabled, I have a disability, that doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just going to quit and be like, you know, what, sign our team, but it What it does mean is that I see you out there struggling, the burden of diabetes is taxing, I feel you, I see you. And I think it's better for all of us to just work harder on accepting the fact that with diabetes, you have a disability that allows you some advantages, and allows you access to some things that people without this disability don't have access to. And to deny yourself that is, I think, a disservice to yourself.
Stacey Simms 22:57
It's such an interesting topic, because you really centered on what bothers me the most about it. And that is that as a society, we look down on disabled people in our language and our actions, it's just baked in. And it's come out so much better in the last few years that we're even able to talk about it. You know, even in the elections, I never thought about that. You know how we don't help. We don't even make it equal access for people with disabilities. And so there's this whole society burden of not wanting to admit that we have anything wrong with us, because then we're stigmatized, it doesn't even it's not even just diabetes. But I also think that, you know, trying to raise a child with type one, many would never say, I don't think he would say even today, and you know, it's not it's his voice is not mine to speak for, I don't think he would say I have a disability, I don't think he would raise his hand like you were doing. But I do think that he should, because all of the fights that have gone before, you know, it's easy, or it's easy, it's never easy, but it's easier to be a elementary school kid or a middle school kid. Now with a pump or a CGM. And with all the education and with a 504, than it would have been in the 70s, or the 80s, when a kid was doing shots and couldn't leave to go to the bathroom, and we've heard all these horrible stories or an employee back then it wasn't protected. And I will say he's had an easier because he has a lot of access and a lot of privilege, you know, these words that we throw around, but he really does. He's got me as his mother with a big mouth and a microphone. But also, you know, I guess I'm trying to say is all that work that went into protecting people with disabilities, as you said, it's really important to honor now, and to understand that if you're a cashier, and this happened in North Carolina, and in other states, leave your cashier at the Piggly Wiggly, and you need to treat your blood sugar with juice, and they won't let you you're covered. You're not gonna lose your job, we're gonna get paid back. And that's the kind of coverage that I think we need to think more about. But I will tell you a funny story about how I didn't help me and I stand by this when we went to we've gone to Disney World many times never been to Disneyland. We live on the East Coast but we've been to Disney World many times. We've never used the disability pass or the guest assistance. Pass or whatever they call it. The reason is, because when we first started talking about it, it was presented to us like a reward. It was like, Oh, you have diabetes, you have this great thing, and you can cut all the lines. And it wasn't presented to me as, hey, Benny might have a low blood sugar or might have a high low blood sugar, you know, high situation, you might need it. And I said to myself, I'm a crazy Disney planner, like, I am good to go. We don't wait in lines, whenever because I plan it. I'm, I love it. So we never did it. And I've talked about this, I was called out on it at a conference, once we're just having a casual conversation, and somebody in their 20s said to me, you know, you're doing him a disservice, because you're teaching him that he shouldn't take advantage of what's out there. And I said, Well, he shouldn't because it's not a reward. And she said, it's not a reward. It's not like a golden ticket, it's there if he needs it. And if you don't need it, fine. But if he needs it, when he goes, he shouldn't feel bad about using it. And she reframed the whole thing for me, and we still haven't had to use it. But I have definitely been less judgmental, and Kinder about other parents that I know who have used it. So if you're somebody that I've, I've been snarky too. I apologize. That's what I think
Rob Howe 26:05
that speaks to your capacity to learn, Stacy, I mean, you know, we all this would be shocking, probably not to no one. But we don't always make the right decision. You know, and we learn new information. And we reframe conversations. And, you know, I'll piggyback on that I, when I was younger, I was traveling a lot for basketball. And I like to get on the plane early, because I was like, Oh, I'm flying Southwest, I'm in the the B section, I'm not going to get a great seat. But since I have diabetes, that's, that's all good, I can go get whatever seat that I want. And then I stopped doing that. And I did that bait for a couple of reasons. I think consciously, I would see people who needed real assistance to board the plane early. And I wanted to be respectful of their space. And whether it's wheeled wheelchair access, or, you know, just extra medical supplies, I find that the you know, like the the accommodation that is made on airlines for people with diabetes is mostly to make sure they can get their medical supplies nearby on with them. And I, for the most part, my supplies, because I'm a dude probably are always a smaller footprint than some of my lady counterparts. And also, maybe I'm just a little bit more of a free spirit and be like, Hey, you know what I'm going to take, I'm going to be out of town for a week, I'm going to take two or three infusion sets and a couple of miles Insulet in my backpack, and we're going to go for it. So it was always close by to me anyway, and all that to say I don't do it today. But I know it's an option. And if I feel like the flight is oversold, or I'm gonna have to make a quick connection, and I want to make sure that my medicine is within reach, I will take advantage of it because I know it's there. And I think having that knowledge and being willing to accept that assistance except those accommodations. And and knowing that that space is available for you is positive. Yeah,
Stacey Simms 27:51
I mean, for me, as I have learned and changed my mind, and I probably will continue to my philosophy is now if you need it, or think you might take it, it's there to help you if you think it's going to you know it be if there's someone else's more need. If you know you don't need something, right. It's like parking in a handicapped spot. When you really don't need it, you're driving your grandmother's card, it's got the ticket on it, and you're just like I'm in a hurry. Don't do that. Right. But you know, but if you need it, use it. And don't be embarrassed or ashamed. And I hope all of you don't even know how to if I'm even saying this the right way.
Rob Howe 28:27
I think there is there is shame wrongfully pointed out, people who look. And I think that's back to that sort of ableism narrative perpetuated in this country. You mentioned like the election. I'll give you another example. Governor Greg Abbott in Texas is in a wheelchair. He had a there was an accident when he was a child, and it caused him to be paralyzed from the waist down. So while I don't agree with a lot of the things that he does, politically, I stay away. And there's been a very big movement online of people who disagree with him, staying away from the low hanging fruit of making fun of his wheelchair, and his disability, because that's not what makes him make poor decisions. from a policy standpoint. That's just the easiest, most that's just like a kid, when you're young kids pointed the first different thing that they can see. And oftentimes, that's very hurtful. But we are adults. And we can see that, you know, that that's unproductive. And I think, again, coming back to not not alienating anyone who has a disability. It's it's more focusing on policy and actual, you know, politics in the case of Governor Abbott that are detrimental to what's going on here, not his disability, I think his disability is completely off of the ballot.
Stacey Simms 29:37
Yeah, it should be it really should be in the diabetes, so much of what you all deal with is invisible, or, you know, you're able to make it invisible. So it's even harder in some ways. So I don't know. And I
Rob Howe 29:48
mean, I think even even on that point, there seemingly is a stigma to, you know, letting your diabetes be shown. And I think there's a lot of people who share they're now very proud of their cgms they're proud of their pumps. To wear them out. They're proud of sharing their numbers on social media. I you know, I get a lot of laughs from people sharing your 69 blood sugar's with me and, you know, I think that that sort of empowerment and saying hey I can I can be publicly facing with this and there's a community with that is great because, you know, look at me I'm like the poster child for some of the negative achievement culture things around diabetes I am you know, handsome white guy who used to have a six pack and you know, got to play sports and live his best life. And you know, he's not held down by his diabetes and what you don't see our bloody sights. And you know, all of the adhesive that you got to wipe off your arm after you change the site, or, you know, the feeling of less than after you're at a pool party pre COVID, and your site got too wet and you got pulled out really easily and you have to go home, you know, or just waking up on a vacation with a high blood sugar and it ruined your day. Like, those things don't always get shown. And I need to be better about sharing some of those low moments personally, on our platforms. But you know, just because you're not you don't look like a Olympic endurance champion with, you know, hollywood abs and a great tan and you know, living in your best life always time in range at 100%. If that doesn't sound like you, that's super okay. And I see you and that doesn't mean that your life with diabetes is less than I think there's there's downsides. And I and I've benefited a lot from achievement, culture and diabetes, but my love, I'm an I'm an achiever, that's what I try it. That's, that's sort of wired into me. And, you know, as I get older, I learn more about myself and why I do things. And I love following the rules. I love having a structure so I can try to achieve that's just what speaks to me.
Stacey Simms 31:40
Wait, I need to ask you though. Okay. I love everything. You've said, achievement culture, though. I'm not up on that as the world's worst diabetes. Mom. I mean, I'm kidding. But you know, I'm all about mistakes. And that's been my platform. And I mean, my brand, I have to call it that. But that's truly how I parent and I've never gone for more I'm what does it cheapen culture mean? Is that that you can do anything? Or I'm only showing the beautiful stuff? or What
Rob Howe 32:04
does that mean? I think that's part of it. I'll reinforce something that I'm sure will speak to you, in a way think about podcast guests. What's more interesting to someone who like at face value, we have two people, we've got a mom with three kids who gets her kids to school on time, leaves with diabetes, and you know, is just juggling a regular life. Or we have you know, two time Olympian bobsledder who, you know, has been around the world 50 times and you know, has been on the ESPN body issue or whatever the case, right? So at face value as a journalist, who are you going to pick for the more juicy story? Yeah, the bobsled guy, the guy, the boss like guy. And I don't know, any type ones that bobsled. So I think it's a good sport, because I'm not singling anybody out in particular. But I think as a diabetes community, I have also been guilty of like, Oh, I'm in this position where I can go speak or I can have, you know, people follow me and they follow the podcast, and I get these opportunities to represent people with diabetes. So I got into this sort of negative pattern of thinking where I was like, What do I have to do next? Like, what is my, I've already given my podcast, talk to all these jdrf chapters? Well, they're not going to invite me back next year to give the same talk, I've got to do something else that achieve something else. So like, right now, even the talk that I give is called from professional basketball player to professional diabetic. And inherently in that title, while it is good, and people click on it is ableism. And it's like, oh, you're only worth speaking at these events. If you achieve something crazy, like proven playing pro sports. And I think I'm really trying to be more aware and more, not cautious is the wrong word. But just more mindful of the things that I say and the things that I do that are rooted in an achievement culture that rewards extraordinary feats, and also tends to erase living a normal life and making that unsuccessful.
Stacey Simms 33:56
I'm going to arm chair psychologize on why it didn't resonate with me, moms aren't allowed to have achievement culture, we are not allowed. And I'm using that term very loosely, because Screw it, I'll do whatever I want. You won't allow me. But truly, if my brand was the best diabetes, Mom, I got it right. And you don't or professional mom, right? You're not going to see anybody talking about that, because we don't talk about moms that way. And I think that's, I know, this isn't about me, I'm glad to have you on as a guest. But I couldn't help but share that because of what you said, I was thinking to myself, How on earth would I achieve something like that? Or what can i and it's really interesting to think about it in those terms. And I think a lot of diabetes moms, what resonates with us is you know, oh, I'm the worst I made a mistake. I'm failing my kid, I got a report card. You know, it's all this negative talk. And that's a problem in and of itself. And you got other things to work on. You got to worry about. I'm succeeding. I'm great. You want to bring me to talk because I'm doing so well. It's so fascinating how we can do this.
Rob Howe 35:00
You know, and I think too, you know, speaking to diabetes moms, which I love, and I think that's a demographic of people, I never thought I would get to meet as intimately as I have. And, you know, I think people like me, and people who achieve are great to show to kids, you know, because hey, look at look at Rob, he's living his best life. He has a podcast, he talks about diabetes, he's not embarrassed. And I live for those moments where I can be the person that I needed when I was 16 years old, and have somebody who's accessible and wants to give back and wants to have those hard conversations and can say, you know what, I do see you man, like, you know, your 16 year mom doesn't know what's going on. You don't want to talk to her. And somehow I managed to remain young looking enough that I can communicate with somebody, hopefully,
Stacey Simms 35:43
you when you talk, you're like with Newsela What are you like, 30?
Rob Howe 35:46
I'd like 32. So yeah, I mean, I see. But you know, Stacy, you're not on tik tok. Right, you know, you know, if you put me on Tick tock, I'd be so canceled. I can't dance. You know, I mean, so I think for me, I just want to try to remain like as tuned into what people with diabetes are going through, that they may not even be aware of. And I think this is in this sort of chronic, all the chronic things that we're juggling, I think chronic focus on achievement, within, you know, some of the diabetes online community cultures is important for us to call out and I think I've benefited from it. And it's important for me, it's important to me, that I make sure to bring people in, who maybe haven't benefited from it and use that to highlight important stories, because you know, what's crazy, and surprised me back to the podcast example, when I first started, and I was really, really digging into what episodes are resonating with people, the one that was far and away the most resonant of my first like 15 episodes, was really the most simple basic, it was a story of a type one mom and how she prepared for her first and second pregnancies with T one D. And, you know, for me at the time, like a 27 year old jock tech bro. I was like, you know, it was a great conversation. And my my friend, Lindsay, who's my friend in real life, did an amazing job. But I never would have guessed that that would be the one that would have taken off of the first group. And it wasn't necessarily the achievers. It's the people who achieve in spite of there being no big reward publicly.
Stacey Simms 37:15
Yeah, well, I think we need and I know you'll agree with this, we need everybody in this community, right? We need the people who go up Mount Everest meet the people sitting at the desk job. But what has resonated with my listeners is anybody they can learn from. And I think it's interesting. And especially at first you want those high, high achieving successful people, those Olympians, and those rock stars, because as a parent of a kid, you can look at this person and say, Okay, this person was type one is super successful. So my kid probably has a pretty good chance of being a mid level executive, you know, at Staples, or whatever, right? They're going to be okay, or IBM, I shouldn't, whenever IBM even exists anymore, I'll show my age. But, you know, we do need those other people who have shown us how it's done something as complicated as a pregnancy with type one to something as simple as, it's not really that simple. But how did you transition from elementary school to middle school with your kid, right? Those are the things that we all want to learn. And I think what's really cool about social media, and somebody like you who's you know, super big on Instagram, and all that stuff, is you get to show, as you said, the cool looking stuff, but you know, it looks great, it looks perfect, but then it's also a chance to show all those crummy site changes. And those days when you don't feel good. And you don't have to polish it all up. I mean, you just snap a picture or talk about an Instagram. And you do that all the time. I think it's great.
Rob Howe 38:29
Yeah, it's new. You know, I think maybe I've even mentioned it before in this pod. But in 2018, at ADA, I found this poster board study in the in the poster Hall, talking about the ANC outcomes and involvement in the diabetes online community. I mean, just that sort of osmosis of encountering people with diabetes on a regular basis, and the things that they do makes you better at diabetes, I don't know. It's just it's normalizing. And I think that's what's so important, and what the Internet has brought. And I think even still, I'm even more learning about sort of the micro communities and diabetes, where you're able to find people that look like you people that are interested in the things that you're looking for. And otherwise, like, where would you find those people. And you go back to when Benny was diagnosed, you basically had the only people in your immediate area were the people that you could stay in contact with early blogs, maybe kind of just starting to sprout. And now you can just go to some of these big diabetes accounts and search for people or look on the hashtag and look at the locations and say, well, wow, there's somebody with diabetes there. You know, I got to be a part of this really great campaign this summer with express a global brand, you know, and
Stacey Simms 39:34
Oh, yeah. Wait a second. Wait a second. Tell me about that. Because that wasn't diabetes, you're like this, like a model? I mean, right. Or model. What was that? That was amazing.
Rob Howe 39:42
I can I guess I can put like publish model on my resume. Now. You know, what's cool about that campaign, and first of all, the Express team was really great to work with. They're all pros. And I think just hearing sort of the creative outline of what they were trying to do as a person with diabetes as a person with a disability as a person with something that makes them different, was just really cool to be there representing people with diabetes. So they sent out like a cold casting call, it had a bunch of stuff, as you know, or maybe not like, I'm very interested in fashion, I love style is something that I just I don't know why you
Stacey Simms 40:16
post your outfits on Instagram,
Rob Howe 40:19
feel free to gather fit pics are my thing. I love them. And you know, my wife and I are currently you know, just having a turf war over who needs more closet space. And I will not lose, I will not lose that, that I just don't put it on put on record. But the cool thing about Express was they said, Hey, we're looking for people who are on Instagram, but it's not a requirement. We're looking for people who have some sort of social good or community type. It's not required. We're looking for people who have an interest in fashion, but it's not required. And I was like, wait a minute, I have all three of those things. Let me like really try to get this. And so it was a cold call. I put together a pretty good application and response. And then I set it and forget it. And like it was 90 days later until they got back to me. And I sort of put it out of my mind. And they said, Hey, Rob, like, we're really excited to have you part of this campaign. Like, can you talk on this day? And I was like, wait a minute, did I book it? And they said, Yes. And so it was really cool to be able to out a big panel. I know, first of all, I was all over the world. inexpressive. I mean, it was a year of COVID, obviously, so not as many people saw me, but like on the front page of Express calm, very visible. And I was not just a model, I was representing myself, I was like Rob, like, hey, Rob is the Express model, and he lives with diabetes. And that was something I had never experienced on a mainstream level before. It's one thing to go to these diabetes events and celebrate those all together. But to be different on a panel full of other amazing superstars, frankly, like, who have achieved way more than I have. I was there as a person with diabetes. And I got to talk about like at base level what type 1 diabetes is and talking about the insulin affordability and talking about what it's like to have an insulin pump attached to your body at all times. And to see people be like, wow, I had no idea about any of that was just really cool to be a part of and like tan France from queer. I was the host on one with tan France. It was unbelievable.
Stacey Simms 42:07
Was he nice?
Rob Howe 42:08
Oh, yeah. Oh, how can he he's like he was so giving. He seems like the nicest guy, an absolute Pro. And honestly, I've done a lot of interviews. I was admittedly not really super nervous for our conversation today. Because I know you and I figured it would be nice and easy, but I was like sweating bullets. Getting ready in my like this in this office in here for 10. France. I was like, like, What's my name? Like? What do I do just like to make sure I don't stumble, you know, but it was a really awesome experience. I'm so grateful to have had the opportunity. And, you know, hopefully it's the the first of many. That's awesome. You know,
Stacey Simms 42:39
I worked at Express. When I was in college, I worked at the express in the carousel center mall in Syracuse. So if you shopped there in 1991 or 92, I helped you out. Not you, Rob, you're looking like you're looking through the time. You were not there. It might be wondering. Well, the
Rob Howe 42:57
thing I was actually thinking about is my wife was born in Cheryl in New York. So he was born in 1991. So maybe her mom this call
Rob Howe 43:05
Rob Howe 43:06
Yeah. Yeah, sorry. Technical difficulties were not cut off. But yes, my wife is a is younger than I am. Which is really funny. And yeah, that's a small world. I didn't know that. You had the upstate New York time?
Stacey Simms 43:19
Oh, yes. I went to Syracuse University. And then my first job was in Utica. And then I moved back to Syracuse for my another job. And then I came to Charlotte where I am now. I was up there for 10 years in the snow.
Rob Howe 43:30
Oh man. very snowy. Very Yeah.
Stacey Simms 43:31
But I grew up. I grew up in New York, so not too far.
Rob Howe 43:33
People were asking me like, so do you shop at Express. And I said, You know, I haven't shopped there recently as much. But when I was getting my first job, and I needed to get rid of my college, bro clothes and like, put on some real professional clothes I went to express so it was like cool to be like, oh, they're like, yeah, like, that's a big part of the consumer that we're trying to reach. And you know, really people who have an interest in fashion, this is a first step for them. And it was it was cool to be very, I felt very seen and very, the team that express was awesome.
Stacey Simms 44:01
That's terrific. Yeah, I worked there. And then I got a job at a radio station in Syracuse. And then that was the end of that. never looked back and worked weekends. Why are
Rob Howe 44:09
you found it you found your Yeah,
Stacey Simms 44:12
I knew what I wanted to do was very cool. Are you going to be working on things like that is modeling something you would like to continue to pursue or the fashion industry?
Rob Howe 44:20
Yeah, tell me what you're advertising I do to being a model for Express wasn't on my vision board for 2020. But I don't know, it was cool. It was just just to be a part of it to, you know, be in front of camera. Like you mentioned, I work in advertising and have been parts of shoots like this, behind the camera and working on the campaign and working on the creative direction, but to be in front of the camera and kind of collaborate with people whose jobs I know intimately. And it was a very small crew because of COVID. And they came they came to Dallas and it was cool to just be able to be in a small collaborative group of people who like I was just a photographer, the director and the videographer and myself. And we just got to hang out all day and talk about ideas and be creative and Yeah, I think I would love to do that again.
Stacey Simms 45:01
Nice. You know, we've been talking for a long time, I didn't even ask you or congratulate you on your wedding, which happened this year. Yeah. So congratulations on that. That's Thank you big, big,
Rob Howe 45:10
wiseguy big fan of my wife.
Stacey Simms 45:13
Good to hear good to hear what's up with you all in 2021. I mean, you're moving ahead with Medtronic. Moving on with the ad agency, you are married, man. I mean, 2020 was a difficult year, let's admit that. But any anything on top, I think I'm almost afraid to plan for 2021 in a way,
Rob Howe 45:29
me too. I I don't want to get too far ahead of my skis, you know, I think we are still a ways away of putting COVID completely behind us. And I also want to be very present in like, how What a tragedy it is. And I think even personally, within my friend group, there's been some very recent developments that are just awful. So I think we need time to heal. And I think we need time to, you know, mourn sort of our old selves, you know, like it or not one way or the other, we're all different because of 2020. And hopefully, we can build sort of on the ashes of everything and be better to each other longer term. We got some cool projects. I think this this question came from Peter from the, from the Instagram story that I posted the other day. And, you know, we're I have a cool series that I'm working on called more than a diabetic, which is going to be debuting next year with some awesome community members. So that's up first. You know, in terms of brand partnerships, obviously, Medtronic has a couple other long term partners that I've had that I want to do some deeper, cooler campaigns with, I'm sort of in a, I don't need new stuff I really want to care for and sort of nurture my existing relationships. And my existing, I don't know whether partnerships are you know, I have my a lot of irons in the fire, I don't need more irons, I need to just really focus on you know, my relationship with my wife, my relationship, my family, my my two businesses, and really focusing on being a good steward of what we have and continuing to do, right for people with diabetes. That sounds like a great plan. I want to have some fun, you know?
Stacey Simms 46:55
Yeah, definitely. And hopefully, we can see each other again and travel a little bit towards the end of the year. And I would just love that. That would be wonderful for me.
Rob Howe 47:03
Yeah. If I want to manifest anything for 2021, I put my hands in the air because I'm manifesting this my manifesting. Okay, if you're listening, you're missing out. I want to go on a honeymoon with my wife in 20. Oh, love that. That would be a fun thing. Travel, you got my wheels turning, I love to travel. And I have missed that sort of being held down at the house this year. So Excellent. Well,
Stacey Simms 47:22
I hope we can do that. I'll keep you posted on anything I can help with. Thank you so much for spending some time with me, Rob, it's always fun to catch up. And you caught me, you know, me talking more than I usually do on these interviews, I think but thank you.
Rob Howe 47:33
I like that. I think it's just the my inner interviewer. And, you know, thank you for all the work that you put in Diabetes Connections. I think when you're a diabetes mom, there's so much work that goes into that anyway, and I just applaud people like you. And then frankly, there aren't that many like you at this point. You've been doing this a long time and do a great job. So I hold you in high regard. I'll just leave it at that you do a great job and I appreciate you.
Stacey Simms 47:55
Well, that's very good. Thanks, Rob.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 48:08
I'll link up lots more information about the topics we spoke about, especially the Medtronic pump if you'd like more information on that, and you can go back just a couple of episodes. We had the folks Medtronic on in the fall of 2020. To go through all of the details. I'll link that up in this episode as well.
And I'll put a link into Rob's Instagram where you can see everything we talked about. He is quite prolific on Instagram and his wonderful wedding photos, the modeling, even the Medtronic signing announcement that I kind of teased him about there. It was great to talk to him and I hope it was okay that I talked so much. It was odd to be on the other side of the microphone, but it was fun to hopefully you enjoyed it as well.
We are going to have my favorite segment of the week coming up Tell me something good. But first Diabetes Connections is brought to you by Dexcom. It is so hard to believe with Benny 16 years old now, almost six feet tall that he was ever a toddler. And I mean it was also just like it was yesterday. It's bananas. When you have a toddler diagnosed with type one. You do hear rumblings for a long time about the teen years people start scaring you about that right away. But when it hit us at full force a little early, I was really glad we had Dexcom Benny's insulin needs started going way up around age 11 and along with the hormone swings all the growth, I cannot imagine managing diabetes without the dexcom continuous glucose monitoring system. We can react more quickly to highs and lows. see trends adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and his overall health. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more Just go to Diabetes connections.com and click on the Dexcom logo.
I got a bunch of Tell me something good submissions this week. So if you are not featured and you popped one into the Facebook group. Please stay tuned I will be sharing them in the weeks to come. Corinna posted a great article from Washington and New laws taking effect this year from Washington State caps the cost of insulin at $100 per month health plans issued or renewed after January 1 2021. Must cap Insulet co pays deductibles and other forms of cost sharing at $100 per 30 day supply. I'll link up that article and I do think we're gonna see more and more legislative action this year and next year when it comes to insulin so Corinna thanks for sharing that
and Corinna’s blog also got an honor. Recently, she writes type two musings, and she was featured in an article on everyday health about the top type two diabetes blogs to watch this year. So I'll link that up as well if you haven't checked her out. She's a longtime advocate and blogger in the diabetes community. Thanks for sharing that.
And just a little good news from Carol Who says I discovered the secret to five sites use six millimeter cannula instead of nine millimeter, whatever works. The thigh site is one that Benny has struggled with. He just does not like it. He's done it here and there over the years. And you know, it's just not his favorite. So Carol, I'm really glad that that worked. You know, we used a longer canula for a while and if you're not familiar for not a pumper. So the canula is how the pump gets the insulin infuses the insulin under the skin, you have usually an inserter of some kind, it puts a needle under the skin immediately withdraws and leaves a tiny canula six millimeter or nine millimeter under the skin where the insulin drips through when Benny was 10 or 11. And we kind of noticed his insulin use going way up. We didn't really think about the cannulas and the insets being overwhelmed. We thought well, maybe we just need to use a longer inset maybe it's a problem with scar tissue. And we switched to the nine millimeter for a couple of months. It made zero difference for him. It was one of the things that led us to untethered, which if you're new to the show, we used a combination of long acting and pumping for two years when Benny's insulin needs went way, way, way up. And it took a lot of the strain off the inset. It helped him measurably it was just wonderful. His insulin needs have gone down. He is 16. He is coming out of puberty. And so we are off untethered. But I didn't mean to be under there, Carol. Sorry. Thank you so much for sending that in.
And I'll add something good in that Benny has started back with wrestling practice. Now this season is going to nothing like any season in the past. I'm not sure they'll ever even actually wrestle for the rest of this school year. But we're back practicing. They are either indoors with masks, I think when they're outdoors, they're wearing masks depending on where they are and how close they are together. But he is really psyched to be back with the wrestling team and working hard. And he's really been working hard all this year. And I'm really proud of him. I don't like to say too much. I'm very superstitious. I'm knocking on wood even as I'm talking, which is why I don't brag about him more. But isn't that ridiculous, but I am superstitious, but he is doing well. And it's cool to have the wrestling practices back again. So that's my Tell me something good. Please feel free to email me with your good news or post in the Facebook group when I ask and just tell me something good.
One of the conversations we had in the Facebook group recently was about predictions for the new year. And I meant to give mine during the last episode, I want to put this on tape so you can laugh at me. We can play it back next year and see if I cut anything right. So here were my predictions. And this was about diabetes technology. I'll go big. I think we're gonna get Tandem bolus by phone approved that has been submitted according to investor calls, I think we're gonna get that approved and rolled out by third quarter of 2021. I think we're gonna get Dexcom g7 approval and rolled out by the third quarter of 2021 as well, that one I don't think has been submitted yet. So that one might be a little bit more hopeful. But come on. I do also think no direct to watch. Sorry, for g7 I still think you'd have to use a phone. But I do predict that the DIY crowd will find a way to crack it. And you'll be able to go direct from the g7 transmitter to a watch. That's very, very helpful. And it's also set up with zero knowledge about what it would take to do something like that. Love you guys. I have no idea. I think you're all geniuses. I think we're gonna get Omni pod five powered by horizon. Not until the fourth quarter. I think they're just a little bit behind only because I mean COVID delayed everything and my understanding is that have not submitted yet. Omni pod folks, you are more than welcome to come on the show. I'd love to get an update about that. Let me know. And I do think we'll also see another viable CGM competitor ready for submission to US FDA by the end of the year by the end of 2020. I think it will be submitted.
So those are my technology predictions. I think, as I've said, really, in this episode in many in the past, I think this is going to be a big year for conversation and education about insulin pricing, not just because the democrats are in charge in DC because let's face it, they didn't do anything last time around about insulin pricing, but I am very encouraged by the education and the advocacy. Frankly, the impatience among many people I'm seeing now, I think it is going to be different than last time around. Look, don't misunderstand my comment. Nobody said anything about insulin pricing for 30 years under any administration, it has nothing to do with party. It hasn't so far, maybe we'll see federal action. But I do think that the state legislators are going to make the big difference here. I refuse to make any personal predictions. I'm hoping that I continue to let Benny become more independent. I hope that he continues to put up with my digital list. Are you okay? Do you need to think Can I help you for at least a little while longer. He's a sophomore in high school. So I've got him here for a couple of more years.
And I predict that the podcast will stay a place for me to serve you. It is really a privilege to do this. I hope we continue to grow at the pace we are I love reaching more people. But bottom line, this is still the most rewarding project of my professional career. I've been in broadcasting a very long time, longer than I'd like to admit sometimes. And this is it. For me. This is the big deal and the one that has made just an enormous difference for me personally. So thanks for that. Got any predictions? We already have a thread going in Diabetes Connections the group I'll bump it up when this conversation goes live. Thank you, as always to my editor John Bukenas from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Benny sits down to talk about everything from which diabetes task he hates the most to what he loves about the diabetes community and much more. Stacey's son was diagnosed with type 1 in December of 2006, just before he turned two. This week he answers questions about Dexcom and pump site insertions and shares his excitement about turning 16 and (hopefully) getting his driver's license soon!
In Innovations, we talk about the new Hello Dexcom program
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, 14 years ago this month, my son was diagnosed with Type One Diabetes. Benny joins me to answer a bunch of questions including how he psychs himself up for every inset and CGM change. He says, you gotta be fast.
Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed and if you like, leave the inset on your body. Like you're holding it there like, more and more you get in your head and like, this is terrifying. Why am I doing this?
Stacey Simms 0:54
Even now after all these years?
Oh, yeah, like if I don't do it in the first like, 10 seconds I have it on my body. I have to like take a minute.
Stacey Simms 1:01
He also shares what he remembers about moving to more independence. He was diagnosed before he was two. So it's been quite a change for us over the years. We also share what makes him nervous, what makes him happy, and a lot more
In innovations this week, a new program called Hello Dexcom may have more people trying this CGM. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am always so glad to have you along. We aim to educate and inspire about diabetes by sharing stories of connection. As I have said my son was diagnosed before he turned two my husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and television news. And that is how you get the podcast.
I apologize right off the bat. My voice is a little rough this week. I have had some kind of lousy cold since Thanksgiving, I got checked for everything. COVID, strep, blah, blah, blah. It's just a regular old virus. And I don't feel that bad. But I probably don't sound that great. So I apologize for that. It really is hard to believe that 14 years have gone by. I remember that day like many of you do the diagnosis day, like it was yesterday. I've told a lot of stories about that day, I was working in radio, our lives were so different. My kids were so tiny. Some of you saw the photo I posted in the Facebook group of Benny and you many of you met him when he was tiny. And it's got to be jarring because I don't share photos of my kids all the time on social media to now see him looking so different. And he's 5’11. I mean, he's working out all the time. And we talked about that in the interview.
It's just amazing, right? You parents know you you hear your kids in the kitchen and you look up expecting to see you know, your seven year old daughter, and there's this 19 year old woman. What are you doing in my house? All the cliches about how quickly it all goes. But I'm always happy when Benny comes back on the show and answers questions that you submit questions that I have. It's amazing for me as his mom and it's become quite a time capsule. I think as we'll look back in years to come, and I hope it's helpful or maybe entertaining for you all. So we will get to that in just a moment.
But first Diabetes Connections is brought to you by One Drop and I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
If you've listened to this show at all, you know my son Benny was diagnosed just before he turned two back in 2006. So that makes 14 years of type one in my house. We've done shows with him before In fact, when we marked one decade with type one, I interviewed my whole family. I will link that episode up if you'd like to go back and listen, I talked to my husband and my daughter and got the sibling perspective, which was really eye opening for me. And I talked to Benny, which four years ago he sounded quite different.
I have been told that Benny and I are kind of quick, we may talk in a bit of a shorthand when we're together. So listening to this interview, you should know just a couple of things. Geoffrey we mentioned is a diabetes camp counselor who is terrific. He's a great friend. We both love him, no matter what we say here. Sorry. Geoffrey. Benny mentioned some issues with his tandem pump. They are being wonderful about this. And by the time you listen, it's probably all resolved. But I will tell you a bit more about that after the interview, Benny and I get a little silly. I don't know if everybody appreciates that But enough of you have told me that it's okay to leave in. So I did. I did take out some really over the top ridiculousness, but I put that in at the very end of the show. So you can listen if you want to, like, Alright, we start off with Benny, rummaging around my office.
So I sent you into my closet to find a mic, pop filter. And what did you come out with? What is that?
It's a USB hub. And what does that do? basically turns one USB slot into three or four.
Stacey Simms 5:29
I remember buying that because I thought I would use it at conferences, but it didn't really work out that way.
Well, I mean, your computer has, I mean, I guess enough. Like it's not a one of the Mac's that have one USB, this would be very useful for that. I do not have one of those, but I will certainly find a use for it.
Stacey Simms 5:46
All right. So how are you?
How are you?
Stacey Simms 5:50
I'm great. Oh, my goodness. So as we are sitting here, this is 14 years of type 1 diabetes. Today, this is your actual diversity is today.
I’m such an old man
Today's the Saturday that we went down to the hospital in Charlotte. And then later that night, when I was freaking out, you put your arm around me and you said
it’s gonna be okay, mom,
you said it's gonna be okay, mommy. Yeah, that was tonight.
I'm an old man. I'm so old. That's wild. I don’t remember any of that.
Stacey Simms 6:15
What's interesting, too, is we started your Dexcom on Christmas Day. 2013. So you had just turned nine? Yeah, or you were about to turn nine. And that's we started your Dexcom you must remember that.
And we were at grandma's house in the big screen room,
Unknown Speaker 6:36
right? Like that movie theater room.
And you were both with me. I was like, freaking out. And dad was just like, Alright, we're doing it wrong. And I was like, that was terrifying. Let's never do that. Again.
Stacey Simms 6:49
That was the old I was gonna say G5. But it was the G4. It was a G4 flat. No, it was a G4 pediatric which had the same inserter as the G5. What I wanted to ask you about was. Stop. You are impossible we need to do this on video one day. See, you've been doing that, trying to like eat the mic three years old, gross, fine. Well, you couldn't find any pop filters, because every time I talk to you I have to get a new one.
So I figured you don't have a lot of like reflections with diabetes. we've, we've asked you some of these questions before
and I'm not the best at answering them.
Stacey Simms 7:30
Not quite a I'm not the most reflective person a meditative Sage if that's the right way of putting it. But you do have a lot of good things and wisdom to share. So I thought we'd take a different tack this time. Okay. All right. So here are some dumb questions.
Unknown Speaker 7:45
We love them.
Stacey Simms 7:46
And you have done your own will say, you have done your own pumping sets and Dexcom insertions I'm gonna say 2 to 3 years now I've kind of lost track, but it's been a long time. I can't remember the last time I did one with you. Which is worse, pumping set or Dexcom
Oh pump? For sure. Why? Tell me about it. Because the Dexcom is a little before the G5 and G for pediatric were terrifying. Yeah, they were like giant syringes and like you could feel the needle go in and like all you could feel it move the entire time.
Stacey Simms 8:17
Do you remember? That definitely let you finish the actual question. But do you remember the first time Geoffrey tried to get you to yesterday or so?
Are we friends for life?
Stacey Simms 8:26
We were at I think a Jdrf conference. It might have been a friend for life conference. But I think it was local. Because Geoffrey was there from our
local. Yeah, we were in the hallway outside the conference room. And he was like you either do it yourself or it's not happening. And that's actually how he made me do my first inset too. But that was that camp. Thank you, Geoffrey. You have traumatized me. He said the way he did it was just push up against the wall. And then like with the white part to go in, and then the clear part. he'd pull it up by himself. And I'm like, that's not how I would do that. And I was I was utterly terrified. I just remember walking up. Oh, you had I had it on my arm, right? And it was like the whole thing was stuck on my arm. And I was just like running around because I will I'm not doing this.
Stacey Simms 9:07
Yeah. If you're not familiar with how the G5 used to work, or the old Dexcoms you'd have to, it just looked like almost like a giant syringe a surrender, right? So you'd push down on one part and then pull up on one part. I'll put a video link in the show notes. So you can check that out. But it's very hard to do by yourself. So people got very innovative and use door jams. And well
I actually did it by myself. I mean, I got to the point where I could you just got to stretch your fingers.
Stacey Simms 9:32
But also you couldn't really do in your arm by yourself.
I couldn't I got to the point. Yeah,
excuse me. Um, it was just really fast because I'm so like most people like did it kind of slowly and then like pull it up pretty fast. But like I did it like all in one smooth motion so that I could actually do it with one hand on my arm. No, because I'm just that I don't
Stacey Simms 9:51
remember. I think when Geoffrey did it that day though. We wound up just removing it. Yeah, we just took it off because it was your conference with it sticking out of your arm.
Unknown Speaker 9:59
I mean Sorry to laugh.
Stacey Simms 10:00
I was like, You were scared. I was terrified. There's so much that you guys have to go through. That is so scary and not fun.
Unknown Speaker 10:07
So Geoffrey bullies me. All right.
Unknown Speaker 10:08
I love you, Geoffrey.
Stacey Simms 10:11
You said the inset hurts more now.
Stacey Simms 10:13
So how do you Wow Tell me about your procedure. Oh, you do it?
Well, the Dexcom. But let me get back to that. Now it's just a button. And it's not scary at all. Like you don't see the needle. You don't see anything but the bandage sticky part and the big orange button. It looks kid friendly. Like it doesn't look like it's gonna stab you. It's just a button. But the the inset like you can see everything. You have to like a bit. You're basically looking at the needle the entire time while you're unwrapping it. And let me just say that the inserts are way harder, way harder to unwrap than the decks comes. Someone should get on that. I'm with you. And like the spring mechanism, like you have to like pinch down on both sides. That's like, I just adds the aspect of like you are stabbing yourself.
Stacey Simms 10:59
Well, it's interesting, because you know, you have done more shots than people. Most people who use a pump will have done well. I don't remember any of them. You just did. You stopped in March. Oh,
Unknown Speaker 11:09
Stacey Simms 11:10
did that Tresiba. Oh, that you see.
Unknown Speaker 11:13
Let me rephrase.
When I think of shots, I think of like the the one with the orange test
Stacey Simms 11:17
syringe shots like the old Oh, yeah, that's true, because you were two and a half when we stopped that. Okay. But what I mean is, here's my question. As a person with diabetes, who has sharp objects in you quite often, it must be so strange to have to insert them and as you're saying, You're watching the needle the whole time you're wrapping the inset unwrapping the inset, and then you put it on your body. Isn't your body kind of telling you like not a good idea?
Yeah, no, I mean, absolutely. Like, it's kind of like sports. Like if you don't do it at that moment. Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed. And if you like, leave the inset on your body. Like you're holding it there. Like Like, more and more you get in your head and like, this is terrifying. Why am
Stacey Simms 11:58
I doing this? Even now after all these years? Oh, yeah,
like if I don't do it in the first like, 10 seconds. I have it on my body. I have to like take a minute.
Stacey Simms 12:07
That just makes sense to me. Because your body is never going to say yes to a needle. It's always going to want to send your body's not down.
This is not a good idea. crazy person.
Stacey Simms 12:18
Does the coughing still help?
Oh yeah, I do it every time. I don't know if I would need to anymore, but I still do it every time
Stacey Simms 12:26
and we should explain when you cough apparently you kind of confuse your body for minor pain.
I think it just distracting. Like I think if you like the whatever it is like the nerves receptor pain, whatever. Just focus on your lungs for like, a quarter of a second. And that's when the needles going in your body.
Stacey Simms 12:43
So can you now cough and stay still? Like that's the one thing that makes me nervous when I hear you coughing it's like picture you moving and then the needle getting
I never moved that much. It's like a little flinch. Like if your cough right now it's not like you're not gonna move six feet. We need a camera
Unknown Speaker 12:58
camera. He just like jumped off his chair. Maybe another time.
Stacey Simms 13:07
Right back to our chat in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar, Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with a pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.
People ask me a lot. How did I get you to do your own insets and Dexcom stuff? And I don't really think we had a method. Yeah,
I don't. I think eventually it was like, I think it was a mix of us saying like, I think we should start doing this and me being like, I should start doing this. It wasn't like one of us was like this needs to change. It was both of us kind of like we can't if we want to
Stacey Simms 14:14
I seem to remember in fifth grade your inset coming out once and me saying you're fine. Do it yourself.
I don't remember that.
Stacey Simms 14:22
Well, I'm glad because I felt kind of mean at the time. But me but you did it and you were really excited about it. And I think it's also as you got more independent. You didn't need me or want me hovering over Yeah. No, but you don't mean like when you used to go to Birkdale with your friends, and we would go places and do things. You know, like in seventh grade, you'd go to Burke does our local shopping center and you wouldn't if your insect came out or had an issue with like, you didn't want your mommy coming to your rescue. Well, I would have been happy to I know. But I think that helps too. So what It's a tough answer, though, because there really isn't an answer is how you did it.
Yeah, it's kind of just um, and kind of just happened.
Stacey Simms 15:07
I think the G6 made that easy too, because you had been doing the G5 as you said by yourself. But when I forgot we were on the G6.
How did you pretty me forgot? Like I forgot. I thought it was like, I
Stacey Simms 15:17
don't know. Am I keeping you awake? I'm tired. You are beat tonight. workout? Yeah, well, we're gonna talk about that too. But when we switch to the G6, and there's that crazy video of you getting all geared up to do it in May of 2018. We got the G6 and you and I did a live Facebook, where you inserted for the first time was that on the couch? I think I remember that was the kitchen table in the old house.
Unknown Speaker 15:38
Oh, I do remember that.
Stacey Simms 15:40
And that after that you I mean, you did that one yourself. And then it was easy. So I never did it again. I mean, I never did the G6 period ever fancy. Yeah. Well, it's weird. After having done everything for you for so long.
It just tell us. You said you can't do it anymore. You said you can stab your son anymore.
Unknown Speaker 15:57
Oh my god. Hey,
tell me. So
Stacey Simms 16:00
tell me about working out. So you your wrestling practice is sort of back pain. And you've been outside today. So much fun.
Working out in masks outside in 50 degree weather is the best thing I've ever experienced.
Stacey Simms 16:14
What happens when you work out with diabetes? Because you work out a couple of times a week outside of wrestling too. I know, to me, you kind of act very casual about it. But what do you take into account? Like, how do you do that?
I'm very casual about it. Yeah, I pretty much just go into workouts. Like, if I'm above 120, and I bring food. And if I go below 120 I eat food. And then wait till I'm above 120 and then go back in. That's pretty much it.
Stacey Simms 16:42
That's that's super casual. I mean, at least you pay attention and you know, do what you need to do.
That's pretty casual. You see, I think you're replacing the word casual with lazy. Lazy would be like I'm 90. Let's do this.
Stacey Simms 16:55
Oh, I don't I don't know. I mean, you want to have an actual workout for the time that you're there. So you take care of what you need to take care of.
Yeah, because if you didn't, then you die. Well, don't worry, or it's a waste of time come in energy.
Stacey Simms 17:06
Yeah. So here's another question for you. I'm curious though. after your workout. You know, occasionally that pump doesn't get put back on
will because I go to the shower and shower last like shower for like two to three hours. Look, hot water and music. Very nice. Okay. Shout out to Tandem. Control IQ is very well, sometimes. You know, we're having some problems.
Stacey Simms 17:37
Yeah, well, we're just having some problems with Control IQ. We think the transmitter and the pump are not getting along right now. Each of the last four weeks have been ridiculous. We've gotten really used to control IQ.
It's great. It's really nice when it works.
Stacey Simms 17:48
Yeah. What is the diabetes chore that is the biggest pain for you.
Oh, filling a cartridge
that definitely filling a cartridge just
Unknown Speaker 17:56
because I said that for No, no, no.
It's definitely filling a cartridge pain in the Can I say a bad word? No? pain in the butt. Why? Because look, it's just annoying. Yeah, I have like 10 units less. Like at night. I have like 10 units left. And I'm like, Huh, I know, I have to go all the way downstairs and fill a cartridge. Right? You're all cozy in bed. Yeah. Like I'm about to go to sleep and I get I hear the stupid Animas alarm. But
Unknown Speaker 18:24
that's not the Animas alarm. You're First of all, whatever. You haven't had an Animas phone for four years.
Did I say Animas? Oh,
Stacey Simms 18:31
do you remember the Animas alarm?
Unknown Speaker 18:33
It was um, Beethoven?
Stacey Simms 18:35
Yeah. Because I can't. I can't hear Fur Elise without like.
But there was just like that very part. It didn't go on. It was like, Dude,
Unknown Speaker 18:46
that was it. Maybe they couldn't get the rights.
They? How did they How were they legally allowed to use that?
Stacey Simms 18:52
I think it's public domain. Is it? I think I think most classical music is Yes. Really? Yeah. You are not doing untethered anymore. We referred to that earlier. That's when you took about 50% of your basal from Tresiba long acting shot, and 50% from the pump with control IQ and with your body mind changing, right. But we didn't need to really do that. What did you think of that? Was it worth it?
I think at the time, it was very nice, because it significantly decreased the amount of times I had to change my cartridge. And that was really one of the main reasons we did it. And did it work like a charm. It did.
Stacey Simms 19:27
And it was also about changing that inset. Yeah,
well, that's different perhaps.
Stacey Simms 19:32
Well, no, I mean, I'm not talking about nagging you to change your inset, which I still do, apparently need to know. But I mean, we thought that there was something wrong with the inset somewhere. I don't know if you remember this. We tried different needle lengths. We tried different types. Right. We went to the longer needle and was just overloaded. It turns out by the amount of insulin we were trying to push through. So once we took half of the insulin away from the inset, it amazingly worked much better. Would you recommend untether You know, for a teen or somebody like I would
recommend it for someone that is using more than half their cartridge today will no more than a quarter of their cartridge a day and is a teenager if you're an adult?
Stacey Simms 20:12
Hmm. Why? Why do you think adults wouldn't do? Well?
I don't know. Like, it just feels like something that like, you know, teenagers have that like a hormonal imbalance. And I feel like it's just significantly easier to control it with a untethered,
Stacey Simms 20:27
I just felt bad. I'll be honestly I felt bad that you had to take an additional shot every day. Well, no,
I mean, I took that into like account mentally. Like I was like, I mean, is it worth it? And I was like, absolutely. It really was. I think that's one of the main things you should consider if you're looking into untethered. Like do you want to do another shot every day? And can you remember cuz I forgot sometimes. Yeah. But Tresiba is really forgiving? Tresiba is extremely forgiving.
Stacey Simms 20:49
Yeah. But it was amazing. The results were amazing. Not just with the cartridge changes, but with your agency and time and range, all that good stuff. Okay. So if it's a big if, if all goes well, you will be traveling to Israel, Summer of 2021 for four to four or five weeks.
Without anyone in my family.
Stacey Simms 21:07
Yes. But with camp with a camp group. What are your thoughts about diabetes? Are you nervous? Are you
a little nervous that I might run out of insets? Oh, and maybe insulin? I mean, I'm sure I won't, I'm sure we'll have an excess. I don't know, like being in a foreign, like, couple thousand miles away for the first time plus diabetes is? I mean, it's a little scary, like, truthfully, it's a little scary. But I mean, I think the fun and the the excitement significantly outweighs
Stacey Simms 21:41
I think you're very smart to worry about those things. Because unfortunately, you have to think about I think the most
thing, the thing I'm most worried about is my Dexcom not wanting to work. Oh, yeah. at Camp Carolina trails may rest in peace. The last year I was there, the second my phone was away from me, my Dexcom just did not connect to my pump once that entire week. And I really do not want that to happen.
Stacey Simms 22:06
Yeah, I remember that. That was um, that was 2018 2017, something like that. And we tried the Liebe re right, because I was kind of a backup plan. And then you were like, I'm just a diabetes camp. Forget it. And you did finger sticks all week. But that would not be fun.
Well, as I've made it abundantly clear. I think they give they their own you too much?
Stacey Simms 22:25
Well, they're ensuring your safety. Not everyone is is casual. But here's my here's
my thing. Here's my thing, right? If you have a Dexcom and someone like someone, a parental Guardian, gives it the Okay, why should you have to do a finger stick?
Stacey Simms 22:39
Well, because there are probably medical guidelines that they must go through, because they're not your parent that makes no sense. What if the parent
or guardian signs a waiver that says you can go completely off Dexcom?
Stacey Simms 22:51
Like, why would that not everybody does as well with the Dexcom as you do,
so that's why it's an that's why it should be an option to sign off to allow the parent or guardian to allow him I'm just so
Stacey Simms 23:01
happy someone will will take you that. I don't I don't sign anything special. I just say Will you put up with him? Here? Here? Take No no, no, no.
It's me putting up with them. Okay, it's very different. All right. Oh, my God. Look, I love the people there. But your policies I disagree with? I'm sorry. They're
Stacey Simms 23:18
shocked those the people that we know that are listening. Benny's never said anything like this to us. We've never heard him complain about anything. What a shocker.
You were Rufus. That was so much fun when we used to actually get together in person Tell me why it was fine. I
love that like the Okay, so, one, there was one day where I was walking down the halls and the second was with all the kids in there like, like the in the place where the parents sent them way to stuff dealing with them.
Stacey Simms 23:46
Like the child care theory.
That's what it's called. I see. I don't know, because I never got sent there because I refused. But like, those kids loved me. And it was it was so much fun. Like I really don't know how to explain it
Unknown Speaker 23:58
to me cuz you didn't have any training. Really? You've never been a mascot before the run in Davidson.
Oh, the JDRF Well, yeah, that was a lot of fun to do. The one the one with the kids though, was definitely the most fun. Like they just like their eyes lit up. They're like, Oh my God is this Oh my god. Oh
Unknown Speaker 24:14
my god, guys, look. Oh
my god. And you're in there and you're hot. And you're Oh my god, I'm so hot and disgusting in there. And I'm like, I'm like in this giant bear costume that all these little kids are hugging like a third of my leg. And I'm like, and I'm like dying inside. like half the time. I'm like genuinely smiling and the cat the other half the time I'm like dying on the inside because of how hot I am.
Unknown Speaker 24:34
But it was fun.
Oh my god, I do it 100 times. It was so much fun.
Stacey Simms 24:37
That's great. If you were to talk to those little kids outside of the room costume we don't want to scare them. Anything you would tell them about diabetes any Did anybody ever seen that helped you like anything that you'd like? Oh,
it's like I've said like 100 bajillion times and like I just said, Do what you want to do and don't let the stinking diabetes stop you. It shouldn't be something that stops you.
Stacey Simms 25:03
Alright, so I'm gonna I'm gonna make it more difficult because diabetes can definitely stop you, right? diabetes slows things down. Dude, how many times have we had to like change an incident a bit when I say stop? I
mean, like, like for a week, like you're just I don't want to do anything?
Stacey Simms 25:20
Well, I think it's important to talk about that because some people here don't stop and they think like, anything that goes wrong is a bad thing. And it's their fault, and they feel bad about it. And that's not what exactly what you mean.
Yeah, no, if something goes wrong with diabetes, the first thing you should think is it is not your fault. You did everything you could, something went wrong. Now, pick yourself out, figure out what went wrong, and try and fix it. And if it doesn't work, you track up someone else to help you.
Unknown Speaker 25:50
And you sounds like the Waterboy.
Unknown Speaker 25:55
That's some high quality h2o.
Stacey Simms 25:59
All right, you are almost 16
Stacey Simms 26:03
Let's talk about driving. I know that you think you've got it all in the bag. Absolutely
have it in the bag. I'm
Stacey Simms 26:09
the best driver this oh my god knock wood. I'm gonna swing a dead chicken over my head. And say a Kenohora the bad luck you just brought on yourself.
Don't do that English. I don't think a word you said there was English.
Stacey Simms 26:20
Just you know, take it easy. Take it easy, my son. It's a big milestone in anybody's life. But certainly for people with diabetes. I mean, we've gone over our like little protocol. And oh, here's a question for you. It's kind of about driving. So this is the first time I remember in your diabetes life where you've said, just give me the glucose tabs.
What's up with that? Well, I never liked the flavor of glucose tabs. I always thought they were kind of gross. But you have to take into account the convenience of them, they won't burst like I've had a lot with juice boxes gone, they won't melt, like gummies if I don't touch them for three weeks in a compartment in the car. And they really don't
Unknown Speaker 27:01
taste that bad.
So when it comes down to it, I'd much rather have something that I can I know will be there when I need it. Then something that tastes better.
Stacey Simms 27:10
Unknown Speaker 27:11
I know I'm so awesome.
Give me a card
Unknown Speaker 27:15
that you get your car. I got you a whole thing of glucose tabs,
Unknown Speaker 27:19
like the big ones. Yeah.
Stacey Simms 27:20
compartment already. That's
Unknown Speaker 27:23
orange, you glad I didn't say banana?
Stacey Simms 27:28
Sorry, I think we're good. What else? Should we What should we end on here?
What's it like? hearing other moms experiences with their kids with diabetes compared to your experience with me?
Stacey Simms 27:38
Oh, my gosh, it can be very difficult. Because I think I'll be honest with you, I think a lot of moms do a, quote, better job of managing their kids diabetes. And I have some guilt that I've given you so much independence, and that I haven't. No, no. juries not here yet.
The jury is definitely.
Stacey Simms 28:00
But I have some guilt that I haven't done as much as maybe I could have over the years. And I know that world's worst diabetes thing is a joke. But it's sort of kind of not sometimes. But on the other hand, I look at you. And I feel like while you may not be a perfect person with diabetes, you are not afraid of it, you respect it, you take care of it, but you're not afraid of it. And you don't feel You don't seem to feel guilt about it and you don't seem to be negative about it. You've never given up an opportunity because of it. And that to me means I'm doing okay. As you know, I talk to a lot of moms, especially in the Charlotte area with this this group that we have, and they're on the shortlist. It's it's a Charlotte parents. We have some dads, also moms, but it's it's a good question. Because I don't think um, and I think with with all parenting with your sister, too, I think that you know, there's no finish line. So I always feel like we could do better, we could do worse. But you know, if you guys are healthy and happy, then I feel okay. But it's a good question, because it's a really difficult one.
Well, thank you for coming to my podcast. We'll love to have you in about two weeks.
Stacey Simms 29:10
All right. Another one another question for you them. Ah, all right. We said how much we left control IQ stop. He said how much we love to control IQ. And I don't even know if you know what's coming down the horizon if I've kept you posted on the thing. What are you looking forward to in diabetes technology in the future?
The 80% thing?
Stacey Simms 29:27
Oh, and the next edition of the control IQ that will bolus you more robustly.
Yeah. Because while it works great, it is still not aggressive enough for me because I tend to rely on it a little bit more than I should.
Stacey Simms 29:39
Well, you, you know it would be really nice not to have to bolus for every meal. I think it'd be
really cool if they could find out a way to know exactly what and when I am eating. Well, there are some elders that thing that like senses when like you told me about the senses when you're moving your hand like
Stacey Simms 29:56
you know, there are some algorithms that are You're just gonna have to tell it you're having a small, medium or large meal, and it should be able to do all the work for you.
I feel like that's gonna that's too big of an umbrella of food. Because like if I'm having a small meal that could be like a bar, or it could be like a bunch of fruit. That's true. I feel like small, medium and large is too big umbrella. Well, it is. That would be a great first step, but definitely ensure my direction.
Stacey Simms 30:23
All right, so you're looking forward to more bolus power.
Yeah. All right. Two more automated bolus power.
Stacey Simms 30:28
Yes. I like that. I'm looking forward to that, too. I'm also looking for better insets As always, because we know those are the weak link of pumping. And I'm also really excited about the smaller cgms that are coming the deck.
I can't wait for the Tandem. The Tsport Oh, yeah.
Unknown Speaker 30:44
What is that supposed to come out?
Stacey Simms 30:45
COVID has knocked everything down. But probably something's coming
to a store near you in 2022.
Stacey Simms 30:51
My guess I mean, it's a guess is late 21. And that'll be fun to try because it will also allow you to try new sites.
Unknown Speaker 31:01
That's really funny.
Stacey Simms 31:02
all right, Benny, thank you so much. Happy diversity.
Unknown Speaker 31:05
Stacey Simms 31:06
I want to give a gift to you. When this airs. It's gonna be an Hanukkah. Say goodbye, like people on your age on YouTube.
Don't forget to like and subscribe and share and comment down and make sure to check out my merchant the description below.
Unknown Speaker 31:19
There you go. Perfect. Bye fam fam.
Unknown Speaker 31:27
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:33
So I have to say, in between a lot of the silliness, I was really excited to have Benny's answers. We really, he told me a lot, I hope you got a lot out of that as well. And again, at the very end of the show, a couple of I guess you could call them bloopers, although it's just us being ridiculous and silly, if you want to hear that. So that's at the very, very end of the show.
I also wanted to mention the issue that he alluded to there with his Tandem pump, you probably are aware, he uses a tandem t slim X to pump with the G6 from Dexcom. And the whole system together with the control IQ software. We've had that since January of this year. And it really does work like a dream. It's a long story. But I'll try to keep it short here. And the basic problem is that the pump and Dexcom are not communicating as they have been for years and years. So it's really become a problem because the follow app and the Dexcom app are working fine. But the control IQ cannot work when it's not getting a signal from the Dexcom. So we've been troubleshooting this with Tandem for a couple of weeks now. They've been really helpful, but it's just taken longer than it might have. I don't know how to quite put this when I was more in charge. Because Benny is great. But he doesn't tell me right away. So when we troubleshoot and things are fixed, I think they're fixed. And then when I check in with him, oh, no, they're not fixed. So I really had to sit on him for this. And Tandem has been great with customer service. And I think we're almost to the end of fixing it. I'll keep you posted.
I think the only other thing from the interview I might need to explain is that he said something about camp Carolina trails is over, you know, the diabetes camp where he went, basically it was just kind of a change of camp in our area of the ADA had American Diabetes Association had run his diabetes camp like it does so many for many years. But things changed a couple of years ago. And now we have a local group that runs the camp. And it's pretty amazing to have that. They're really cool people and we'll have them on again, I'm sure to talk about all the good stuff that they've done because they do a lot more than camp. It's the diabetes, family connection. They have great Instagram accounts, some other stuff, but very cool people, we're really lucky to have them in this area, and they took over the camp and have done a great job despite what Ben he says he's such a complainer about that stuff.
All right, I want to tell you about our innovations segment in just a new program from Dexcom and Diabetes Connections is brought to you by Dexcom. As I said, we've been using the Dexcom G6 since it came out. It really is amazing. It is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. I know it sounds silly to a lot of you who are newer to CGM, that's amazing. It really is wild. to not have to calibrate we have been using Dexcom for seven years and it just keeps getting better. The G6 has longer sensor wear and the new sensor applicator as Benny said it's so easy to use. We still love the alerts and alarms and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
Innovations this week a new program from Dexcom. And of course when I talk about them or talk to them I always like to disclose as you've just heard, I just did a commercial for Dexcom and they do pay me to talk about them in the commercials of this podcast, but what you're about to hear is not part of the endorsement, they did not pay me or give me anything to talk about this. I think it's interesting. And I'd love to know your take on it as well.
This is a program called Hello Dexcom. And it is a new sample program. So what's gonna happen here is that people are going to be able to try a G6 system at no cost. They basically get it at their doctor's offices, it says - and I'll link this up in the Facebook group as well and in the show notes on the episode homepage - but it says whether provided to a newly diagnosed patient to get them started on CGM right away, or a CGM naive patient who wants the opportunity to try the device before committing to a personal system. The Hello Dexcom sampling kit allows people with diabetes to experience the life changing power of CGM, they get the transmitter the sensor and access to a digital experience. They call this a 10 day digital empowerment journey to ensure they get the most out of the experience and understand if CGM is right for their personal diabetes management.
Now, I of course had lots of questions. Look, we've said a million times CGM is going to be standard of care. There are 39 CGM systems in development, who knows how many are actually going to come to market in the United States or in other countries, but this is going to be standard of care for people with diabetes. So more people getting on CGM might be a great thing. I don't know, I am always concerned about education. I see it all the time. And I've you've heard me tell this to Dexcom. And to pump companies until the break, people get this stuff on their body, they go home, they don't know how to use it properly. They don't know how to use it to its utmost. They don't know how to use it so that it helps them thrive rather than holding them back. We just need more education. Obviously, this is a soapbox issue for me.
So I asked, and I'm gonna take you through the QA that I did with Dexcom. So this was an email back and forth. I'm going to read you my questions and their answers. If you prefer to read. Look, every episode this year has a transcript. So this will be in the transcript if you prefer to read it. I know especially with my scratchy voice, it might be kind of hard to listen to. It doesn't matter to me, if you want to read if you want to listen, that's going to be the next two to three minutes of the show.
So here's what I asked, Does the patient get the sensor and transmitter with no commitment or insurance coverage? They said yeah, since Hello Dexcom is a sampling program. It's available at the doctor's office comes at no cost to the patient. So I said since the transmitter lasts 90 days, what happens at the end of the 10 day trial period? Does the patient choose to continue on with the same transmitter? Or do they just throw it away? They said at the end of the 10 day sampling period. If the person chooses to stay on Dexcom they will be able to use that transmitter until it needs to be replaced. I'd like to know more I wrote about the digital empowerment journey. What is that videos personalized instructions. The digital journey they wrote is a 10 day email series that walks the user through how to make the most of the GS six. Once a user receives the Hello Dexcom kit. they'll receive instructions on how to set up their online digital journey. They go on to say they'll get the dexcom clarity app they'll share that with the physician once the sample period has ended. There are checkins in the form of email, which share more information they can get custom alerts and allow others to follow through Dexcom follow.
who is the daily check in with I wrote the patient's doctor a Dexcom employee? If it is the latter, is it tech support or a diabetes educator? emails are sent to the patient every other day, they wrote as part of the empowerment journey. But users will also have access to customer support to assist throughout the process. At the end of the sampling program, users will meet with their physician to discuss their experience and review their clarity results.
And finally, I wrote this might be an unpopular question. But I know my listeners will want to know if Dexcom can afford to give away this many sensors and transmitters. Why not lower the price for existing customers? Here's their response. A lot goes into creating this technology. It takes years to develop, study and gain approval. And then of course you have to market it raise awareness and encourage people to use it. The Hello Dexcom sampling program is part of that effort to raise awareness and adoption of Dexcom CGM to help people control their diabetes. They went on to give me some information about coverage. I'm going to link up if anybody does need help paying for their Dexcom. Or if you need information about Medicare and Medicaid, I will link that up as well.
But I think these are questions that need to be asked because from a sales point of view, this is a home run program, right for Dexcom. You go to your doctor, I'm not sure if I want to use a CGM. They have the professional ones they could put on you where you don't see it. These have been around for years and years. They put a CGM on you. But you don't look at the information. The doctor gets it and uses it to help with care. Or maybe it's a way to test out the CGM. But this is a much better way to test out a CGM, right when you get to keep the transmitter when you're done. So this is a really cool program. But I could also see some confusion because we know enough people who get educated by educators right they they meet with the CDE they Meet with a Dexcom trainer. And then three days later, they're in my group saying what happens? Why do I have down arrows? What does it mean? If I have signal loss? Where can I put this on my body and all the things you've seen in all the groups you're in? So I do think that we need so much more education.
But this is a really interesting program. What do you think? Hello, Dexcom? Is that something that your doctor has talked to you about? It's brand new in December, but by the time this episode comes out, it'll be out for a little while, love to hear your thoughts on that. And again, I will link up more information in the show notes.
As we come into the homestretch of 2020. I know most of you cannot wait for this year to be over. But I have a feeling there's gonna be a few interesting technology drops before the end of the year. That always happens in late December. So I am braced for it, which means probably won't happen this year, because I'm ready. But I do have some great interviews lined up, we are going to be heavy on technology in 2021, I have decided, it's what I'm really interested in what you're really interested in. Of course, we're going to tell the great stories from our community. And we're going to keep talking about access and affordability. But I am very excited to talk to new pump companies to talk to new CGM companies to check in with our friends and find out what's happening at companies like Tandem and Ypsomed, and Medtronic and all the stuff that's coming out in the next year or two. So we're gonna be heavy on technology. Let me know what you want to hear. If you work for one of these companies. Come on, reach out, we'd love to hear from you. listeners to this podcast are smart and savvy. And if you let them, they can help you. They're fantastic for focus groups and studies and they really get it so I didn't expect to make a pitch that way. But if you have a pump CGM technology diabetes company, email me Stacey at Diabetes connections.com we can definitely get you the ear of people that are hungry for information, want to hear from you and want to help you because we don't want you to make advances or what you think are advances. We don't want you to move ahead. Without us. We want our input to help make your products better.
Stacey Simms 42:03
thank you as always to my editor John Buckenas from audio editing solutions. Thank you, not only for listening, but for being there. I mean, I'm not just an announcer in this community, right. I'm a mom, you heard my kid. You know, we need you. We need each other. I'm honored a privilege to serve this community. And I'm also so grateful to be part of it. So thanks for always being there. For me. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections, is it production of Stacey Simms media? All rights reserved. All wrongs avenged?
It's like I've said like 100 bajillion times. And like I just said, What?
Unknown Speaker 42:54
Making a face that you just say it?
Unknown Speaker 42:56
Am I not allowed to go?
Stacey Simms 42:57
Fine. Take your time.
Unknown Speaker 42:58
I'll take a sip of tea.
That's That's her taking a sip tea. You're gonna laugh You are laughing. Tea. Yummy. Here's the tea.
Unknown Speaker 43:20
Oh my god.
I think you should not edit this at all. That's
Unknown Speaker 43:23
gonna go at the end. Oh, that laughing
Clinical trials are incredibly important for research, but the people who take part don't usually get to meet anyone they've helped. Marty & Alecia are a very special exception!
Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Wesner’s eyesight! We’ll share their remarkable story and talk about how much progress has been made in treating diabetes eye issues.
Join the Diabetes Connections Facebook Group!
In Innovations this week.. a new partnership in the closed loop space. We'll talk about Lilly and Ypsomed
Check out Stacey's new book: The World's Worst Diabetes Mom!
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, taking part in a clinical trial is incredibly important, but it's often thankless you don't expect to meet the people you might help years later. That's why it was remarkable when Alecia met Marty,
Alecia Wesner 0:40
the people who tested that technology, I'll never meet them and tell them but you know, you're some that I can still see or the reason I have the strap is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either left or didn't or they lost their life
Marty Drilling 0:56
while she was moved because I was still alive and she'd been told we all died. I was just moved to St. meet somebody who had benefited and certainly appreciated.
Stacey Simms 1:06
Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Westerners eyesight will share their story and talk about how much progress has been made in treating diabetes eye issues.
In innovations this week, a new partnership in the closed loop space could bring a new pump to the US market.
Welcome to another week of the show. I am so glad to have you along. If you're listening as this airs, it is Thanksgiving week here in the US probably a Thanksgiving, like none other for many of us, but I hope you are staying healthy and safe. Of course on the show, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son Benny was diagnosed with type one right before he turned two, and he is almost 16 years old. This episode I think is a really nice one for Thanksgiving. It gave me a lot to be thankful for specifically, the amazing people in the diabetes community who lived through very different times, and went through these clinical trials to make things better for people that they assumed they would never meet. It's also a really great Thanksgiving story, because it's just one of these heartwarming, yeah, I got to admit, Alecia made me cry. Oh, my goodness, it was a wonderful story.
So I'm really glad you're here, we also have some really good information about not just taking care of your eyes, but complications that can happen, what you can do about them and the progress that has been made. So if this is something that you have been worried about, I just saw a Facebook post from a young woman in her 20s with something very similar to what Alecia went through. I think this will give you a lot of hope. And some ways to take action.
Quick reminder, my book, the world's worst diabetes mom is on sale through the end of this month, I think it makes a great holiday gift, you kinda have to sort of know who you're buying it for. You know, make sure if you're getting it for your mom, or your wife, that you let them know that you don't think they're the worst that It's me who's the worst, I could see how that could go kind of wrong, but just go to Diabetes connections.com. And you will see the book, scroll down a little bit. There's also a tiny little shop button at the very top, but the promo code is “November.” And that'll take $4 off through the end of this month. And that is plenty of time to ship it to you for the holidays. And I will sign it if you buy it off my website. I can't sign it if you buy it off of Amazon but it is there in paperback ebook and audiobook,
okay to Marty and Alecia in just a moment. But first diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime instantly share blood glucose reports with your health care team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strip subscription plans pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo.
My guests this week were diagnosed a generation apart, but boy are they peas in a pod. I think Alecia even says that. Alecia Wesner was diagnosed in 1979 when she was six Marty Drilling was diagnosed at the age of four in 1953. I asked them to come on the show because back in October, I saw a Facebook post from Alecia talking about her virtual JDRF bike ride and here is what she said.
“Today I ride to honor my friend Marty one of the original clinical trial patients of laser eye treatments for diabetic retinopathy He is one of the reasons I have my vision after many years of laser treatments in my 20s and early 30s. Thank you, Marty.”
I had to find out the story behind this. So I called them up and brought them on. Quick note before we jump in, we are going to talk a little bit in this interview about eyes and eye surgery. I don't know about you, I'm really squeamish. Even though I've had LASIK, I have my own eye issues. If that is you, I promise I will jump back in with a quick heads up, I will warn you and let you skip ahead over that stuff if you prefer. And keep in mind we get to this late in the interview. But you should know upfront treatments have changed significantly from what Marty and even Alecia went through. So this is went through. So if this is something you need, this is an interview that should encourage you. It shouldn't scare you.
Alecia. Marty, thank you so much for jumping on and sharing your stories today. I appreciate you being here. Thanks so much.
Marty Drilling 5:54
You're more than welcome.
Alecia Wesner 5:55
Thank you for having us.
Stacey Simms 5:56
I admit, I don't know much more about either one of you than the Facebook post Alecia put out not too long ago, and I thought I gotta talk to these people. So well, you know, we'll get to that we'll talk about clinical trials and how you two met. But first, let me just set the stage a little bit. If you don't mind. Alecia, can you start by just telling us your diabetes story. You know, when were you diagnosed?
Alecia Wesner 6:20
I was diagnosed in 1979. So I had type one for 41 years. I have, like you said been in a lot of clinical trials over the last six to seven years of my life, mostly in the AP space. And I live in New York City. I'm very active with JDRF. I'm a JDRF rider. And I've written many, many miles on a bike.
Stacey Simms 6:44
And when you say AP You mean the artificial pancreas trials. Yes. And Marty, What's your story?
Marty Drilling 6:49
Well, I was four and a half when I was diagnosed in 1953. So I've been living successfully with my diabetes for 67 years. My math is correct. And my first clinical study was the one that Alecia and I bonded over was my 1974. When I was in my final year of law school, I finally went to the Joslin clinic in Boston, and they said you've got you're going to go blind if you don't do anything. And they had the new laser surgery study going on through the NIH. So I was one of the original guinea pigs in that, and fortunately proved to be very successful. And I still have my vision 40 some odd years later. And when Alecia and I first met, which was just about a year ago, it was at a advocacy day on the hill in Washington DC. And I happen to mention I was a participant in that study. And Alecia immediately reacted, I had that too.
And then Alecia, pick up the story from there because it was pretty amazing.
Alecia Wesner 8:03
Yeah, please no Marty is downplaying this. So Marty and I, we spent an entire day together. And we're like two peas in a pod. And really like wooed each other side through this whole day through Washington running around and talking about diabetes and life. And one of the things that we talked a lot about Marty's destiny, a lot of questions about the 80 trials that I was participating in, and different pumps. So what I hadn't asked Marty was more of his diabetes story. So we were at Elizabeth Warren's office. And Marty ended up telling the story about his life of diabetes, but specifically about being in trials for retinopathy. And I got totally choked up, which I have now. I'm sorry. But in listening to him, I have spent a lot of my adult life advocating for clinical trials and clinical trial participation. And one of the things you know, I get to be on the stage and tell people about this is my experience. And that's why we need to push these things forward. But one of the things I always show are pictures of my eyes because I was diagnosed with retinopathy in my 20s, which was terrifying.
I work in a visual field and rubbed my eye one day, I noticed that the graph paper I was looking at was waves and not straight. And I'd seen doctors have my eyes checked every year. And they had said they were starting to see something but it didn't really panic me until I saw it myself. I saw a doctor who said you have two options. And one is we keep doing laser and the other was a very aggressive form of laser that was new. And I went, you know, 24 years old. I went with the aggressive ones, but long story not short, was that one of the things I always talk about for why I participate in clinical trials is that I will never have the opportunity to thank the people who kept my eyesight, the people who tested that technology. I'll never meet them. Tell them, but you know, your son that I can still see, or the reason I have to struggle is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either lost their vision or they lost their life. And many of them were gone. So I just assumed everybody was, for lack of a better word dead. And so Marty telling the story, I just lost it. And it was, this was my friend for an entire day, we lunch together, like we have this whole day of bonding. And all of a sudden, like all these people, I've always wanted to think through the person. Oh, nice, good. So I was a mess. So there is a picture of us that I took, because I am really into like capturing the moment in which I am we are both crying outside Elizabeth Warren, about the fact that like this is, there's no more important moment to me than this moment. So yeah, so that is how we are friends. So I'm sorry, Marty. Your version of this story,
Stacey Simms 10:55
I'm upset with both of you now. Because I think I have cried twice on this podcast in five years.
And you've, you've just done it again. And it takes a lot. But I think because and I'm not gonna, this is about you guys. But I think when you have a child diagnosed so young, and you have to jump in and take care and do all this stuff. And plus, I've worked with information for so long, my whole career has been in news. I hate to put it this way, but you kind of harden your heart. But at the same time, I'm with you, Alecia, I think all the time about the people that have done so much to make my son's life better. And to meet somebody like that in the circumstances in which you met Marty. Yeah, no. And so Marty, let's swing over to you. And don't brush it off. I know you're gonna try. But what was going through your head, when you looked over at Alecia and realized her reaction,
Marty Drilling 11:47
as I said to Alecia, I was really moved, because this is the first time I had ever really met somebody and talk to somebody who had benefited from my laser treatment, I experimentation. And it moves me just realize in specifically that as a result of my efforts, and many others, we should still had benefit. And I knew that in general terms, but I really had never talked to anybody who had benefited from that. So while she was moved, because I'm still I was still alive. And she'd been told we all die. I was just moved to say, to meet somebody who had benefited and certainly appreciated.
Stacey Simms 12:34
So if you don't mind, let me ask some details. And I always say look, if this gets too personal, you know, we'll move on. But I'm very curious if you don't mind, Alecia, what happens? So when you're treated like this? Does it go away after a while and you're fine. Now? Do you have to continue treatment would you mind kind of sharing what you went through?
Right back to Alecia in just a moment. But first diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap, you push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvokeglucagon.com slash risk. Now back to Alecia talking about her issues with her vision and what she was able to do.
Alecia Wesner 13:51
Yeah, absolutely. Well, I know that my situation is could be different than somebody else's. But for me, I was in my 20s this was, you know, certainly a wake up call of my own diabetes care and maybe I could take it up a notch. And I had not been on a pump before that and decided that would give me tighter control but that this was the time to make this decision. Which I look back at which I think a lot of people who are on pump technology say the same thing, which is that they wish they had done it sooner. And I'm certainly in that boat, but I had aggressive laser for years. And I am extremely grateful to the Marty's of the world specifically Marty and also really, really great doctors. My vision is fine now I'm 47 years old. So I wear glasses because I'm old not because I because of anything diabetes related. I will say so so you're both of my eyes have been treated a lot. I have not had any laser in well over 15 years, which is great. And I just saw my doctor Recently, and he said, you know, your, your eyes have never looked better. And that's what he says, Every time I see him, that's a nice thing to hear, as somebody who, you know, I, my careers in lighting design, the irony of all of this and that it's lasers treating my eyes. It's always been interesting to me. So I asked a lot of questions at the doctor's office, and I, I get a copy of all of my scans, because I'd like to look at them. And I have them hanging in my office, because they kind of center me and they remind me that you know, life is short, and to be grateful for the things you have. So I guess to answer your question, My vision is fine. But if I close one eye or the other and look at graph paper, it's definitely distorted. But my eyes compensate for that together.
Stacey Simms 15:43
Wow. And Marty, I was kind of struck when we started this conversation, you said you did your first clinical trial in 1974, which is five years before Alecia was diagnosed, which is interesting to look at, would you mind taking us through a little bit of what your management was like, at that time? And, you know, just kind of talk a bit a little bit about what it was like, then?
Marty Drilling 16:05
Well, way back then, you know, you were told, and now you have to understand well, I have to take a step back. Sure. Back in 74, I was living in Boston, and I only went to the Joslin clinic, which, of course, is one of the pioneers in the study of diabetes in that year, when is my third year of law school. And I had never been to a specialist before. So what we did was what my parents said, cobbled together, because they were frequently told when I was first diagnosed, and they would call and say, Hey, listen, you said he shouldn't have a snack in the afternoon. But if I don't give it to him, he's going to pass out. And my mother often says that one of the once you would call the doctor's office, they would say Mrs. Drilling, you know more about treating diabetes than we do. So you just do what you think it's appropriate. And that was not an easy burden for my parents to bear. And I give them all the credit in the world, but we, you know, I stuck to what I can remember is I stuck to the basic, you know, I'd have no whatever I had for breakfast at that time, I would try to maintain a boring diet just so I could try to stay within some bounds of normality. And don't forget, we didn't have the meters until probably around that time. And so we were just testing our urine in the cup. And I always thought orange was the predominant color because it always came up white. As I told my mother is, you know, you have to live. So I would go out with the my friends and had a drink of beer too, and on weekends and whatever, but I was a student so I did a lot of studying in law schools that sort of helped me maintain some degree of normality and exercise. I was much more made probably because my blood sugar's were higher than but I could do a lot more exercise then because my blood sugar's didn't plummet, except on rare occasions. And fortunately, my friends could tell when I was, wasn't doing well and what helped me out, but it's
Stacey Simms 18:23
interesting you were and I know that some of us have a misconception of the like, the diabetes, Dark Ages that people were like, lying in bed or doing you weren't living life. And there you are. You went to college, you were in law school at this point. I mean, you found a way to make it work, even before blood sugar meters were at home and birthing.
Marty Drilling 18:41
It's not like I had a choice. And I am an eternal optimist. So I figured, hey, this is what I have to deal with it to deal with it, you move forward. And the whole idea is to enjoy your life not to sit there and moan and groan that you have, you know, an illness because everybody has something.
Stacey Simms 19:01
So when you found the clinic at the Joslin center, when you signed up for those clinical trials, how long did that last? Was it once and done? Did you continue to do that for years? Can you take us through a little bit of what those trials were like?
Okay, Remember when I said I would jump in? Here I am. If you are squeamish, skip ahead about two and a half, maybe three minutes. If you are really sensitive and don't want to hear any details of any eye surgery. I'm sorry, but to have to skip ahead about eight minutes when we switch to talking about Alecia's experience with artificial pancreas trials. But truly, two and a half to three minutes will take you through what I would consider the most sensitive stuff that's happening in this interview. The rest of it just makes reference to eye surgery and some procedures without anything that I would consider really sensitive. Okay, fair warning back to Marty.
Marty Drilling 19:50
Sure. first trial was in my left eye, and I think I told him we should this story but but when I went in there, it's like a Frankenstein movie because it was a very sparse room. It was just the Doctor coverall and his secretary and they put you either lie down on this metal table. And then he'd approach with the head to anesthetize my eye. And this is very primitive, as you can well imagine. And so he was approached with a needle that I thought was about 10 feet one to, you know, stabilized and anesthetize the eye so it wouldn't move. And then back then they had a huge light to make sure he could see where it was going. And he told me, we had the same brightness, as the lights, they used to light up the ocean when the astronauts were landing it at night, and then they just started zapping away. And that had to do that for three days in a row. And he said, You have to be very careful, you don't want to jostle your I, like put books under the top, where my head was under the bed, make sure my head wall was stayed above my heart. So after three days with the left guy, they, I would call back and see them, I think I was going back like every three months or so, it was a long time ago. And I don't always remember all the details. I had laser surgeries, I don't know how I lost track of the number of times I got zapped in both eyes. As the years went on, the improvements in the treatment went on. And so by the time the West laser treatment had, I had a I just had to put my eye up to the machine, resting my chin on the little bar there. And they could zap it right from there as opposed to having to any or they just would put drops in the eyes. So in terms of pain, it was much less painful and much less cumbersome.
Stacey Simms 21:49
Do you remember about when the last treatment was? I mean, are we talking a year later? 10 years later? I'm just trying to get a sense of that.
Marty Drilling 21:55
Yeah, it was well into the 80s. Because Don't forget I had, they had to make sure it worked in the left guy. And then I needed in my right eye as well. So yeah, I was, I see ABS would have been, I'm sure it was a waste into the 80s could have been in early 90s. And then I but I haven't had treatment for a while. I've had a couple of vitrectomy surgery because my vitreous was wrinkled in one eye. And but similar to what uh, we should just saw the last time I've been in with a number of years I've been in to see the doctor, they're very happy that it's stable. They have some issues with my right eye, which is my good eye. But they said it's stable, so we can just keep doing what you're doing. That's great. So how do you is?
Stacey Simms 22:42
I bet so how do you if you don't mind? Again, this is a little personal. But how is your day to day vision? I mean, we're all wearing reading glasses, as we just said, you know, that kind of stuff? You know? All right, exactly. No doubt. But how is that for you, Marty?
Marty Drilling 22:58
While my vision I can see, which is 90% of the battle. I try not to drive at night, because I have low vision impact. And the it's very difficult to see street read street signs and the lightbulbs get become stars as opposed to circular. So but other than that, I don't have any restrictions and reading once in a while I'll get a floaty but it has not impacted my quality of life to any significant degree. And since I enjoy walking, I don't mind walking around in to various restaurants or whatever that are nearby. Alecia, let
Stacey Simms 23:42
me ask you, people, including me, are a little squeamish. And I've had eye surgery and I've had eye issues. You know, I don't have diabetes, but I've had other issues. And it is one of the things that I think makes many of us very nervous to the point that I would be concerned that some people with diabetes or any condition would be scared enough not to want to seek treatment. Can you talk a little bit? I mean, look, you've already mentioned you've got like eyeball pictures in your office. So I'm not sure you're the best person to ask. Can you perhaps ease some fears about getting treatment for retinopathy?
Alecia Wesner 24:16
Well, I do think one thing that I should have made clear earlier, is that treatments have really changed since certainly since Marty had laser treatments and that I have had laser treatments. I mean, you know it from the diabetes perspective. Although lasers still one of the treatments, there are more options than there used to be. And I know for me, I think I'm pretty selective about my doctors. I've taken years to build up, like my dream team. I really like my doctor, I admire him, he saved my vision. So I think that helps a little bit to but also I think that you know these appointments, it's not like you're there for a month. It's one appointment, you do it once a year and then if you have a problem, you know Make your decisions on how you want to be treated. But the actual laser part of it, the types of things that I was having done, it's more the waiting, that is the harder part than the actual treatment, you know, you're, you have to keep your head still and your eyes being held open. And I guess for somebody who's like squeamish about their eyes, that might sound kind of freaky. But I would think you'd rather have your eye held open, then you'd be trying to do it yourself. So you know, it's just a matter of staying to bill. And I don't know if I will ever be good at meditating.
But I think the focusing on other aspects of life for something like that, I mean, it's no different than any other part of diabetes care, you know, some of it flat out sucks, but you know, that these are the steps that you take for, for your life to go on. And certainly for me with my eyes, you know, I'm looking at a picture of my office right now with my eye and, and it looks like all little dots all over the inside of my eye, and that is scar tissue from where they cauterize the vessels. And that is not what a normal eye looks like. And that is the inside of my eye. But when I look at that, I didn't feel anything during that, like it, there's no physical pain, it's just the discomfort of things still, and a bright light being in your eye for a little bit of time. So I think in like the scheme of, of like, physical pain of things that you're treated for, certainly, as somebody who's broken quite a few bones, like a broken bone is 1000 times worse than having your eyes treated. But I think the stress of the anticipation of having a problem is really the hardest part.
Marty Drilling 26:38
If anybody is concerned today about getting treatment for their eyes, the progress that has been made makes it a totally different experience from what we experienced and what I experienced. And they don't even use laser treatments as their primary choice for treatment of anybody with the retinopathy. So they shouldn't be squeamish. It sure beats the alternative of not being able to see
Stacey Simms 27:05
Alecia, I've got to ask you, because you know, you've been through these clinical trials, and my son uses control IQ. I'm curious, what led you to that? And when did you jump in? Was it back with type zero years ago?
Alecia Wesner 27:17
Yeah. Well, this is this is a crazy story. So I live in New York City. And I was at a JDRF board meeting, and Todd Brobson spoke, and he had been in a lot of the very early closed loop clinical trials at UVA. And at the end of his speaking, I asked to take a picture with him and hug him. And I don't know that he was totally comfortable with that. But I'm aggressive. But I felt so passionate about what he was doing. And that, how could I do something like that? And then, you know, you worry, because you've had diabetes for so long that you won't qualify, you know, like, Am I almost like too broken to participate in these things. So I got on the list at UVA, along with a very good friend of mine. And over about a year and a half, there were a couple times where they were going to bring us in and you know, we got our physicals and all of those things. And then we both got an email saying, We've good news and bad news. The good news is the trial we were going to use you for has made enough progress, that we don't need you anymore, which you know, if you think you're going to be in a trial, that's a real bummer. Especially because you're trying to coordinate how you're going to get to UVA and like take time off work and all this other stuff. But the good news was that the next phase of trials now is going to go out to other research institutions. And one of them was Mount Sinai in New York, I got this email as I was sitting for my regular three month checkup with my endocrinologist and Dr. Cara levy. And she was the doctor who was going to be overseeing the trial.
She walked into the room, I said, you're never going to believe this. And she said, I already know your file as somebody who maybe could be in this trial. So that's how it all started for me. But I think for me, at a certain point in my life, my life view is that this life is really a gift, and that I am lucky to be here, and that I have lived on borrowed time since I was six years old. So I think I had gotten to a point where you know, I can do fundraising, I can do walks and I can do rides and everything else. But what is the next level for me of how you know, my life, and this body can make an impact and I thought being in a clinical trial so you know, some of the trials have been much more challenging than others. One of them was actually up at Joslin and I wish I had known Marty then because I then walked around Joslin, after everything and there they had done a lot of eye scans, and they have the original equipment for treating eye treatments in the lobby at Joslin and to me that hit me hard because you know your life is like Not a straight line and not a normal path that you plan. But that was a real moment. This friendship that I have with Marty is, you know, we were laughing about the fact that it's been a year. But Marty and I talk all the time. And it's such a crybaby mess. And I've only had like two cups of coffee, like usually this is like a drink.
Stacey Simms 30:28
But we understand why,
Alecia Wesner 30:30
you know, I just, I just feel really lucky. And, and I am glad for that. And it is just, it is such a pleasure to know somebody who has, you know, it's like Marty, I, there were no blood meters when I was a kid, it was testing your urine. And the technology has changed so much. I mean, carb counting didn't exist. But I I look at that. And it's, it's such a special thing to have this bond with somebody else. And that they they really did have an impact on your life.
Stacey Simms 31:01
Marty, have you been back to Jocelyn? Have you seen that in the lobby?
Marty Drilling 31:05
Oh, yeah, absolutely. stone in the base of my unit. It's prominently displayed there in the lobby, the corner of the waiting room. I have seen it then that like a we should meet makes a big difference. Joslin does a great job of maintaining the history of the development so that we can all appreciate this how far we've come, we're not, we don't have a cure. But most diseases, you never get a cure. But certainly with the improvements made with them, the pump and carb counting, we have a lot of instant information to help you make a best decision you can based on what the facts are at the time, knowing full well that what may work five days in a row, which isn't going to work six days, six, seven or eight. But but that's just the reality of the situation. And was it wasn't cool, we should he's right is I think we have a unique bond just because we have so many shared experiences, and have the same approaches is take advantage of each day and your torture.
Stacey Simms 32:10
Before I let you go. I'm curious. Marty, one more question about you know, your story here. They told you it sounds like one of the reasons you did the clinical trial in the first place was because they said, you know, it's 1974 you're probably going to go blind if you don't do this. And I'm curious, you know, looking back at that, what's that, like to hear those words, I talked to a lot of people who are diagnosed, you know, before, I mean, I'll just put down 2000 as a casual marker, I'm kind of making that up. But I know people who were diagnosed in the 1990s, who were told they wouldn't live to be 30 years old. You know, it's got to be devastating to hear that. And I don't know how somebody hears that and says, forget you, I'm gonna fight I'm gonna do what I need to do to make it. I'm just curious, you know, when you hear words like that, how do you keep going?
Marty Drilling 32:54
From my point of view, I said, I'm going to make the most of each day if that's what's going to happen, you certainly don't have an alternative because there's only a Joslin said, if you will have a comply with the rules and you know, live a good life in terms of diabetes care, you can survive, and if you don't, you're gonna die a quick and very painful death. So that was the impression. But no, you're talking about those that were diagnosed in the 90s. Back in, in the 50s. My mother, I was four and a half. And my parents were told, he's not going to make it to its 11th birthday. So I go leash everyday is against, I just figured I'm going to get the most out of life while I have it in this 70s. every October, the New York Times would run a full page article. And now all the deleterious side effects of diabetes long term complications. So I figured if I survive to the age of 40, I'm going to not have any legs or be blind. So that certainly impacted I'm sure on some of the nights when I decided I was going off this strict regimen. But all in all, I just said, I sort of figured if I can defy science, and that's alright in my own book. And so I just kept wanting to prove people wrong, but it didn't it impacts how you think about life. Certainly, I didn't do some things like I never took up skiing for an example. And we should can because I was told by ice wood, all the jolting and going down the ski slope would cause the my eyes to hemorrhage. So there are sacrifices you make, but I just never let it stop me from getting out of bed in the morning and doing something positive.
Stacey Simms 34:50
And now Alecia, I'll ask you to you know, it is remarkable to meet someone like Marty, who as you said for years you wanted to thank the people that had done these clinical trials, what is it like now knowing that you are that person? for other people, there is somebody who is into the 21, who is thanking you, who may never meet you for doing these clinical trials and everything you have done.
Alecia Wesner 35:14
Yeah, that part's a little weird. So because Marty actually asked me this one time, about how I see him, that other people will see me like that. And I really poopoo the whole thing. But there is a sense of responsibilities. Like when you're in these trials, you're following a lot of rules. And I think the reason that I kept kind of working my way up the chain of clinical trials, as far as AP step one was because at the beginning, they want to make sure you're, you know, you're on a tight schedule, and you're writing everything down. And you know, it's a huge time commitment. So I think I've taken the responsibility of being in trials very seriously because I, I want these technologies to work. But I think for me, you know, I, and Stacy, you're a mom to somebody with Type One Diabetes, I think that a lot of credit goes to my parents, my parents, when I was diagnosed, the doctor said, She's a child first and a diabetic second. And that really, they took that to heart. And I played sports, I didn't want to play like sports, I hated. My parents made me play, because I was going to show the world that I could do this, but also because I was supposed to be getting exercise.
And like I went to sleep overs as kids. I did not like in my class, because my mom thought if this person will you know, when I was diagnosed, the concern in the neighborhood was that I was contagious. Right? Right. It must have been Oh, yeah. And, you know, all of a sudden, like, I went from having friends too. And, you know, this is long before the internet and sold. But, you know, somebody invited me to sleep over and I thought this girl was a bully. And my mom said, You're going there. And I was like, Please don't make me go, please. Go and, and, you know, and I ended up going to sleep over because her mom really wanted to put it out there. But it was okay to have me sleep over. And I looked back at, you know, my parents pushed me so much. And I guess there's like a negative to that too. But I think in the end, like, you know, I went to college, and I knew somebody else with type one who went to a local school because their parents didn't want her. They thought it was too much of a risk to move away. And Stacey, as you pointed out, we both went to Syracuse. And Syracuse was, you know, a whole different world than what I had come from. But I think those things, and I do think that's part of the bond that I have with Marty beyond like I was to have these clinical trials, we don't have diabetes and stuff like that. It's that I think we both have a very similar approach to life, which is go out there and do it. You know, and that doesn't just relate to diabetes. That's life.
Stacey Simms 37:45
I love it. Well, it has just been remarkable to listen to both of you. I hope I've done your stories justice here. I'm still kind of teary and I'm not happy about that.
Alecia Wesner 37:59
Marty just had his wedding anniversary this summer. And I spent the day with him.
Stacey Simms 38:05
Oh, Marty, how long have you been married? Tell us about tell us what your wife.
Marty Drilling 38:08
My wife is a saint. We've been married 47 years, have two kids and five beautiful grandchildren. And I tell people all the time that without her I don't think I'd still be here because she has accepted the burden of living with a type one diabetic and does what she knows has to be done. Even if I'm having my low when I get nasty. She put tolerate it and then I pay for it later. But I get out of that immediate situation. And so yes, Maureen has been a godsend to that. She after we got married, she actually went to nursing school, too, because that would give her more flexibility in working with the kids. But it also has been a huge benefit for my day to day existence in our day to day life together.
Unknown Speaker 38:58
Stacey Simms 38:58
Alecia, thank you so much for joining me for sharing your stories. And I really hope you come back. Let's check in again, maybe you know next year and see what everybody's doing. But thank you so much for joining me.
Marty Drilling 39:09
Well, thanks for the invite and great, great talking to you and Alecia.
Unknown Speaker 39:15
Unknown Speaker 39:21
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 39:27
Lots more information on what you need to know about taking care of your eyes. We will link up more information about some of these clinical trials. I just found this story to be fascinating. You can go to Diabetes connections.com click on the episode homepage as always for the links in the info and the transcript. I so enjoyed this interview. I think you could probably tell as I said, I don't get too emotional about this stuff anymore. But every once in a while it sneaks up on you and boy, I mean you can't even hear it really during the interview. I cried so much more. It's a complete mess and it was one of the things Few days, I forgot what I was doing that day. But I'd actually put on makeup. I had something else where I had to be on camera, and I was a complete mess. If I haven't cried off my mascara in a very long time, thanks to all this working from home. Hopefully we'll follow up with Marty and Alecia, I really think they'd be fun to check back in with.
Okay, up next we're going to talk innovations, a new team is announced for the United States pump market. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you know, you can use it on both a desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it now about once a week. I probably check it a little bit less than that these days. But it really helps Benny and me dial back and see longer term trends and help us you know, not overcorrect to what just happened for one day or even one hour. The overlay reports help the context of these glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us find out more go to Diabetes connections.com and click on the Dexcom logo.
As I am taping this episode, it has just been announced. And I mean like an hour ago that Eli Lilly and Yep, so med have entered into an agreement to quote advance an automated insulin delivery system, they are getting into the hybrid closed loop market. There is going to be a lot more information forthcoming. I have already contacted these folks to see if they'll come on. I definitely want to talk to Lily I really want to talk to Yep, so mid I hope I'm saying that right. This is a European pump company that has been out bro, I'd say since the mid 2000s, probably since 2016. I know a couple people who use it who are very happy with it. It hasn't come to the United States yet, but really plans to bring it here, they will probably submit in 2022. If all goes well, so who knows if it'll be early or later when that will actually come out. But here's what's interesting to me. And again, we're getting a lot more details in podcasting is not the best way to get breaking news. So I will be putting more out on social media.
But here's my very quick take about two two and a half years ago in May of 2018. A bunch of bloggers and I guess influencers were invited to Lilly's headquarters in Cambridge in Massachusetts, as Lily had this connected diabetes solutions system that they started talking about, and apparently or supposedly wanted blogger input. So we all went and we were shown an early prototype of what was supposed to become Lilly's pump. And I assume now that they are not going to use what we saw, which was a little disc it was a little bit smaller than I think at the time, people compared it to like a little round box of shoe polish or tobacco chew, you know, that kind of stuff. It was about the size of a small coaster, it was less than an inch high, it was very sleek and tiny. It was connected to the body by a little tube. So you could make the tube longer or you make the tube shorter. The idea was that you were close to the body, kind of like what we've seen of the upcoming and expected tandem tee sport where it has a tube but it is supposed to be placed very close or on the body like an omni pod. And you could hear us talk about Lily's connected diabetes solution as they call it in a past episode, I will link that up. It also features pens, and it is at least at the time we were shown it would be using the dexcom CGM. I don't see an announcement of that. I don't see a CGM announced with this. But of course, they'll have to be one, the assumption would be that it is Dexcom since Lilly has an agreement with them.
But what's troubling and I guess that's a strong word to use, but I'll use it. what's troubling about this is that this pump will use prefilled insulin cartridges for Lilly's rapid acting insulins. So it is a proprietary insulin system. I don't think there's any other pump on the market that only uses one kind or one brand of insulin. And my guess is they will make sure that by making the cartridges, a special shape or some kind of patent so that if you want to use a novo insulin in it, you can't. I don't know for sure. We haven't seen that the DIY community is fabulous at this and if it can be done, I know they will get it done. But I find that troubling when we voiced that in 2018, we asked about using only Lilly's insulin in their pump and how troubling that would be. And at the time reading between the lines, my takeaway was Lilly feels the insulin makers all feel that the Ryan's gonna be over soon, states are getting into the action, they're cracking down on price. There are going to be reforms whether they're on the federal level or not, and they're not gonna be able to charge what they have been for insolent and they need to find a way to continue to make the outrageous sums of money that they are making. I know it's not very nice of me to say but you And how I feel about this. So I think proprietary pumps are one way that they may try to do that. I of course will give Lilly a chance to respond, as I said have already reached out to them and to give some meds so hopefully they will come on the show and tell us more competition in the pump market is a great thing, but not if that's at the expense of competition, little as it is in the insulin market.
We’re in the homestretch of 2020 and like a lot of you this year cannot end soon enough for me However, there's still some good stuff to come we will look at the bright side as much as we can and friends for life is coming up. They are doing a wonderful virtual winter conference. I will link some information in the show notes as well. We are doing our game show Wait, wait, don't poke me which is one of my favorites. And we had a great time doing this. I love writing all the nonsense that goes into the show. If you haven't listened to it or seen it in the past is a take off of NPRs Wait, wait, don't tell me. If you haven't heard that show. I highly recommend you listen to it. It's just a fun trivia news and nonsense. There's limericks. It's really a fun game show. Doing these game shows without an audience is very difficult. My panelists were ready in game and up for anything and they did a great job. I might have to put a left track in as I edit it, we shall see. But I hope if you're going to friends for life, virtually that you stop by watch the game show and take part we have some fun interaction. Last time we did this over the summer I created a bingo game where you could play along from home. I think we'll do that again.
And then we are just looking forward to 2021 I have lots of fun stuff in store for the podcast as usual. I always want to hear from you. Let me know what you think what you like to hear what you don't like to hear. I take it all to heart and do the best that we can. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Halloween can be a challenge for many families touched by diabetes, but just imagine beng diagnosed ON Halloween. That's what happened to Kelly Kunik in 1977. In this "Classic" episode from 2017, Kelly shares her story, her family's unique experience with diabetes, and what led her to beginning her blog, Diabetesaliciousness, in 2007.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with type 1 diabetes available as a paperback ebook and audiobook, read reviews and get your copy today at Amazon or at Diabetes connections.com.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:30
Welcome to what I'm calling a classic episode of Diabetes Connections. This interview originally aired Halloween week of 2017. But it's a really good one. And we have a lot of new listeners and a lot of people who might discover it now for the first time. So if that's you, Hi, I'm your host, Stacey Simms and my son was diagnosed with type one almost 14 years ago as a toddler.
And Halloween this year is going to look very different just like everything else in 2020. But I hope you find a way to celebrate Halloween that is safe, that feels good to your family. And as always doesn't let diabetes get in the way. If you have questions about Halloween, if you are newer diagnosed family or you just are confused, you want to try something new this year. We did a great ask the D moms episode about that. And I will link that up in this episode homepage, you just go over to Diabetes connections.com. And when you see this episode, click on it and it will have a transcript and it will have links and one of those links will be over to that ask the D mom episode where me and my friend and wonderful author McCarthy give advice. We get questions all the time and we answer them the best we can we did a whole episode about Halloween.
My guest for this episode is all about Halloween. Now. Not only was she diagnosed on Halloween, but she loves the holiday you're going to hear her family. I mean, they do it up big and they always have Kelly Kunis was diagnosed with type one in 1977, 43 years ago. And yes, you really was diagnosed on Halloween. She is a diabetes advocate mythbuster consultant, writer and speaker, Kelly launched her very funny and insightful blog diabetes deliciousness in 2007 with that goal of busting diabetes myths and spreading validation through humor and ownership and advocacy. She is also a daughter, sister, cousin, niece and and to people living with type one and type two diabetes. That incredible family experience really gives her a unique perspective. So here is my interview with Kelly Kunic on the eve of her 40th diversity with type 1 diabetes.
Kelly, thanks for joining me, you're one of the things I get a lot in parenting groups that I'm in is you know, what do I do about Halloween? And so we're gonna be talking about that this week. But I thought it would be really fun. And so just a good excuse to talk to you. To find out more about being diagnosed on Halloween. I shouldn't have said it'll be fun. It's always fun to talk to you, Kelly. But that's not fun at all. Thanks for coming on with me.
Kelly Kunik 3:11
Well, thank you for having and thank you for doing what you do. And I think Halloween is an excellent topic.
Stacey Simms 3:18
Yeah. Tell us your story. You were diagnosed. And I can't believe as we're talking here. You're kind of on 40 years for your diagnosis.
Kelly Kunik 3:25
Yes. Yes, I am. And that's crazy. And I can't believe it. And I just as shocked as you are. But yes, it will be 40 years with, you know, celebrating my type 1 diabetes diagnosis on Halloween. And it was interesting. And what I remember a lot of it, tell us, I just remember a lot of whispering that week with my parents and my siblings. You know, I have siblings who, who also have type one. And my dad had type one. And, you know, Halloween every year was a pretty big deal in our house. And it was up to my siblings to come up with my Halloween costume. or help me come up with it. Because there were so many of us. And I couldn't get them to commit. And I remember coming home from school one day, and my sister Debbie, who had diabetes and who had passed away from diabetes met me at the door. And she asked me if I was thirsty. And I was of course, and she gave me a tab. And I download it. And then she asked me if I wanted another one, which of course I did. And I download it. And then she asked me if I wanted another one.
Stacey Simms 4:44
And we're talking about tab the diet soda because just to be clear, right? I mean, right?
Kelly Kunik 4:49
That right tab the diet soda and I drank the third one and then of course I had to go to the bathroom. And she said well drinking I'm not going to let you go to the bathroom, unless you pee on this test tape, which was a way back in the late 70s to test what your sugar was. And I was smart enough to know that that wasn't a good thing. Because there was test tape in all of our bathrooms, because of my two sisters with type one and my father, and I looked at my sister and I told her I didn't have to go to the bathroom. Oh, geez. And I was a pretty stubborn little girl. And I refused to go to the bathroom for like an hour. And I was dying at that point. Like I literally was doubled over in pain, but I knew that something was up and that if I peed on that test tape, something was going to happen that I didn't want. And I finally you know, I did I like I said, I would do it. And it turned to color it shouldn't have.
And there were lots of whispers. And I remember my parents being on the phone with CHOP children's hospitals, Pennsylvania that night. And it was the night before Halloween. And I don't really remember a lot. But I remember the next morning we got up very early. And we drove to Philadelphia to CHOP. And I remember waiting in the registration office to register because as a patient because we'd never been to chat before. And then the physical exam. And I remember them hooking me up with an insulin drip. And I was trying to make my parents laugh. So I called it the Alaskan pipeline. Like luck bomb. It's the laughter pipeline. Look at me, I have my own Alaskan pipeline. But I really wanted to go out trick or treating. I wanted to go out and costumes, you can talk of all these different costumes I could wear and I love Halloween. Not just because the candy. I love dressing up in costumes. That was kind of my thing. As a kid. I was always dressing up in costumes, like if I could have gone to school in a cape. But back in the 70s it wasn't really acceptable. I was constantly dressing up in costumes. And I tried to convince a nurse who was dressed like a clown, that the results were inconclusive. Again, I watched a lot of television
Stacey Simms 7:25
you're waiting to hear. You're eight years old. You're trying to tell that the medical professionals around Yeah, because maybe it's not, you know?
Kelly Kunik 7:32
Well, I I used to watch Quincy, on answer Carol Burnett. Yes. And so I was I was just like, repeat everything that Quincy would say, I'd like to think the tests are inconclusive. And he just let me go out trick or treating. I promise you, I won't eat any candy. And my parents will bring me back tomorrow. But I have all these costumes lined up. And she looked at me and she said, Oh, honey, the tests are inconclusive. You have diabetes. And no one had said that. I said, Oh, okay. I guess I have diabetes, like okay. And I didn't really think that's when I started not to like clown so much. Yeah, and I remember them telling me that I could go trick or treating in the hospital. They could provide me with a costume, which was subpar. There was no way I was walking around in this costume. They had no creativity behind them at all. And then I could only get dietetic candy. And I was like, nope, no, thank you not doing that. I know what that is because of my sisters. There's no way I know, your stomach. You know that? What does to your teeth? I'm not doing it. And so I stayed in and watch TV, you know, and kind of waited till my parents left to lose it a little bit because they didn't want them to get upset. I could tell that they were upset and I didn't want them to get any more upset.
Stacey Simms 8:55
Tell you so much to talk about that you've said already here. But it strikes me now you've said a couple of times that you're trying not to upset your parents. You know, I mean, you were eight years old at the time, your perspective is different. It's your dad has had type one. You had other people in your family, sisters, other people in your extended family. Why was it so important to do you remember, it's just amazing how we try to protect the people around us. They didn't mean protecting you did you're though, you know you were the little kid.
Kelly Kunik 9:21
I think I knew from a very early age. I was one of six children. It was not necessarily a common household. You know, the six kids there were two parents. There were various extended family grandmothers great uncle's living with us, which was wonderful. It was a great way to grow up, but I knew the diabetes. I didn't know exactly what it was. But I grew up with it, if that makes any sense. And I knew there was a stress level involved with it. Even though I didn't understand it. I knew that some of my siblings and my dad would take needles at the table. Before they ate, I knew that our bathrooms were sort of set up like a lab with test tubes, and things like that, because they didn't test blood sugar back, then they tested urine. And your insulin was very, very precious, and a bit expensive. And I just knew that I like to make people laugh when they were stressed. And I think when you're the youngest child diabetes or not, that's kind of the thing. Just sort of become the comic. Because everybody's watching what you do. You're the youngest, baby. Oh, isn't that cute? She's so funny. You know, and I knew I couldn't articulate it. And I couldn't explain it. But I knew that it was big for my parents, this diagnosis or whatever was going on, because I couldn't even articulate it like I am now. But I knew that I knew they were sad. And they were trying to act like they weren't. You know what I mean? And I knew that for a fact. So I was trying to make it easier for them. And look, kids are smart. They just are, and they see, and they handle things in certain ways. And, you know, when you see your dad who's, you know, trying to keep it together, you want to make it easy for him. Especially when it has to do with you.
Stacey Simms 11:24
It just, it's amazing to me that and you're right kids know, they are much smarter than I think we give them credit for and even Benny at two was trying to make me feel better. You know, it's as hard to see your parent be upset. And that's it. You know, a kid wants to fix that most of the time. So even he do and that's what it is. Yeah.
Unknown Speaker 11:42
So So what happens on a Halloween,
Kelly Kunik 11:44
I stayed in and watch TV. I mean, I, I wasn't going to go out trick or treating in the hospitals. I had to have diet like guy they called it dietetic candy when I was throwing up. It's what it was called. And it was disgusting. And it caused a lot of gastrointestinal distress. And they had something like a jolly rancher type of dietetic candy that would make your teeth stick together. For like, five minutes, while it melted in your mouth, you could not separate your jaw. And I'm not kidding. It's God's truth. And it just wasn't worth it to me. I had tried this stuff, because my sisters would get it in their Easter baskets, or, you know, family friends would bring it over for them. And it was disgusting. And you know, when you're little, you don't know the difference. And you're like, oh, Chocolate, right? And it really did cause a lot of problems. And I knew that. Like, I mean, you learned it very young. Yeah, I didn't even have diabetes learned it is not good stuff. So I was like, I'm not a I don't have my costume choices with me. I'm not wearing these drugstore. Like I have a closet full of homemade patterns that are very good. And I'm not chick retreating. And working so hard for this disgusting candy. Most of it
Stacey Simms 13:10
was it was Halloween. Was Halloween ruined for you or the following year? Don't you dig out one of those costumes if I wake up?
Kelly Kunik 13:19
Oh God, I went to I never missed a Halloween growing up. The rule was like every other kid, I will give that credit to my parents. I never missed the Halloween. I went out with my pillowcase. Because that helped more. And we trigger treated for hours. I would eat some candy while I was trick or treating because we were walking like three miles. And then I came home, went to the living room, dump the pillowcase on the floor. Did the division like all the kids do? Candy? Like they like candy. They don't like candy. They would consider trading money. Because people would throw in nickels and quarters, boxes of raisins, which immediately hit the trash. And my mom would say, yeah, it's I mean, it was like any other thing. My mom would say, okay, what's the candy you wouldn't keep? And she would keep it. And we would figure it out like when I could have it. And then in a week or two, somehow that Halloween candy would disappear. Sometimes my mother would hide it after a few weeks in the top of her closet, or on top of the china cabinet, which kind of dipped in so you couldn't see what was laying on top she would put it or those cabinets on top of the refrigerator that holds nothing and are really hard to get to. But after a few weeks, just slowly disappear. And she'd say your your siblings ate it. Daddy must have gotten into it. You know my mother was a Chocoholic. I mean, but we always had fun. I always went out with my friends. And I give my parents a lot of I remember going to like Halloween party. somewhere maybe in fourth grade, I don't remember. But there was a cake. I think my mom even brought it. I think my mom bought a cake was ghosts on it was a big deal. And the ghosts were made out of icing. That was toothpicks. And I remember like, I won't want to go, but they didn't see I couldn't. And that was really smart of them. They didn't make it a bad day. They made it a fun day. It was a fun day. Halloween fun. They kept it that way.
Stacey Simms 15:28
Just wonderful. And it's just so great to hear. Did you have a favorite costume over all those years?
Kelly Kunik 15:33
Except that oh my god, are you kidding me? I was a gypsy, which was actually my mother's mother's costume from a Gilbert and Sullivan. Oh, she was an orator in England. So I had this beautiful like corseted top, that all the girls were in my family. And we I was Gypsy and I had a scarf and a big skirt. I was tigerlily for like two years in a row three years in a row. Maybe because I was obsessed to Tiger Lily did not like Wendy Darling. I could not relate. I thought Wendy Darling was a whiner. He thought Tiger Lily was a badass. And she kind of looked like me a little bit long, dark braids. And I have long dark braids. But she's who I related to. And I was her for two, maybe three years. I was a jack in the box. One year I won an award for that. most creative con. So yeah, I mean, I love Halloween. I don't. I think it's a great I still think it's a great holiday. So I don't know. Yeah. And I don't like when people and I understand why they say it. I shouldn't say I don't like but I always tell people to mine their words, when it comes to diabetes. Like Don't let your kids know that you're dreading it. Because it really is a fun hot day. But it's great not to be you for a night. You know what I mean? diabetes or not? Like it's going to be a challenge. But today they give away much more prize related gifts today than they ever did when I was growing up. And look, we are black that we can count carbs today. Nothing is off limit. Well, let's
Stacey Simms 17:12
talk about that. Let's go on. Let's just you know, we'll get on the soapbox for a minute because Kelly people who know you sure you have opinions. opinions are welcome. I have a radio friend who says agreement is not required. So let's let's just talk about it. You can say whatever you want here. Because as a parent of a kid with type one. Halloween is is scary and is your oh my gosh, everything's got to change. It says how do I do this? And then I have actually found if I could talk about me for a minute. The hardest part for Halloween for us has always been my well meaning neighbors, because I have a daughter who's three years older than Benny. And since the time they were very little we did Halloween just like you guys did. We get all the candy we put most of it away even without diabetes, you're gonna throw half that candy away or give it to the truth is the dentist or whatever. So my neighbor's bless their hearts. You know, those first couple years, they would say here's a Hershey bar for Lea. And here's a sugar free hard candy for Benny, you know, like, Oh, right. And I'm not letting my two year old eat a hard candy anyway,
Unknown Speaker 18:13
but Right, right.
Stacey Simms 18:15
Yeah. And some of them did have little prizes. I mean, I have one neighbor who always has a little toy for him. Like, you know, Penny toys is so cute and so nice. And I never said to people, you know, at the door on Halloween. No, thank you. We're not taking that sugar free candy. But you know, maybe a couple weeks later, when you're seeing them at the grocery store elsewhere, you can kind of work it into the conversation. But I always tell parents just go and like you said, you're walking so much half the time that they go low when they're out there, right.
Kelly Kunik 18:44
Yeah, I mean, like when I said I walked three miles at night, my hometown was only a mile long. Again, like, not really big, but we walked so much and for so many hours that my parents encouraged me to have that Chocolate bar because they knew I really needed it and I wasn't you know, when I was little to treat a low we would eat an orange. My mom didn't even bother cutting and wrapping an orange in tin foil. She said no, she's going to have she's gonna have a Reese's Peanut Butter Cup and she's walking around because she's gonna need it. But like you I still get asked you know, can you eat this Is this okay? And I always tell people like there's not too much I can eat I don't eat liver. They won't eat liver. So
Stacey Simms 19:28
not even with not even Chopped liver. No,
Kelly Kunik 19:32
no, I don't like it and you know, I know that I probably should like it because I run a little bit on the anemic side. I have my whole life but I can't stand liver. But yeah, I'm like the only thing I can't eat is liver. You know everything else is Game on. Oh, and like you said like diabetes or not divide the candy up and somehow it disappears the next few weeks because nobody functioning pancreas or not eating all of that candy. Just Can't nobody can adult child a child with diabetes, don't diabetes, anybody, people, it's just too much sugar. But, you know, I'm sure you talk to your neighbors and tell them something similar because I don't know, it's really great to have people thinking and looking out for your kids. But sometimes what they're trying to do like, for me, personally, I think there's a lot of damage with the sugar alcohol, like gastrointestinal is not damaged. But
Unknown Speaker 20:31
that's what I always trusting. So
Stacey Simms 20:34
I want to try to tell other parents Look, the way I handle it is just, you know, you don't say don't do this, you say, please do that, you know, you say, oh, wasn't Halloween fun? Hey, you know, we're trying something new this year, or maybe a couple of weeks before, you know, my doctor says, even if your doctor never says, you know, my doctor says that it'll be really fun and easier for Benny, if he just gets all the regular candy. And then we figure it out at home. Because right, sugar alcohols aren't good for him, or, you know, it's just better to have the real stuff. And but thanks so much. So just nothing special. And we'll see it in a couple of weeks of Halloween. And that way, nobody feels bad. You're not saying you know, hey, you bought us that candy, and we never ate it. And it made him poop for three days, you know, we're never not doing that.
Kelly Kunik 21:13
You know what it's expensive to that's the thing like here, people are really looking out for you. And right, and your child and spending more money than they should for very little bit of candy. Because, you know, a sugar free Chocolate bar or whatever. And it's expensive. So
Stacey Simms 21:34
I'm thinking here, we're talking about trick or treating, which I put all the costumes and everything. But it's been 40 years, if you don't mind me asking you to reflect on that a little bit. Something has diabetes never change. I imagine some things have changed quite a bit. You know, your bathroom probably doesn't look like a laboratory with those test tubes. Are you doing any reflection with the shear?
Kelly Kunik 21:54
You know, I am. So much has been going on in our world lately. Like I was gonna, I really wanted to do it up right for my 40th. And so much has happened over the summer and in the fall around our world with the elements and things like that last night I yesterday, I was working all day at a fundraiser for Puerto Rico, that I haven't really gotten it together to have this huge celebration I wanted to have. And five years ago when it was my 35th I was smack dab in the middle of Hurricane Sandy. Oh, right. Where I was where I lived was hit very hard from Sandy. So again, everything sort of went to the wayside. So I think I'm gonna do something for the year, as far as reflecting, because it's not just going to be about the day, a year of reflection, and bringing it into the 41st. year. I mean, quite, quite honestly, when I was little, I didn't necessarily think a person could live 40 years with diabetes, you know what I mean? Like, but I don't think as a child, you don't think that far? Know what I mean? You're just very immediate in the now for the most part, because that's what childhood is. It's the now. Yeah, I mean, I look back and I, I can't believe it. You know, I can't believe it's been four years, I can't believe all the changes, I can't believe I started with this journey with people who aren't here anymore. And my family, that makes me sad. But I try and live and be positive for them. So that's good. I mean, I just want it to be a good year. And I want it to be a great life. And, you know, we take the good and the bad, right? vinegar with the sweet. So there are days I get annoyed with it. Don't get me wrong, but I really try and focus on the positive because if I, if I let it bring me down every day, then what kind of life is that? You know, any mean? Any it's not going anywhere? So I like to say some days I'm in charge other days, diabetes in charge, like, some days we're both kind of like co executives of Kelly Punic Tony beam. Yeah, you know, there are days where I'm the CEO, and there are days when diabetes is nipping its heels and trying at my, you know, like, No, I want to be in charge. But I try and work with it as much as I can. You know what I mean? Because I don't want to hate it. There are moments when I dislike it intensely. But I don't want to hate myself. I can open up any magazine, and that tells me I'm not tall enough. Not skinny enough. Not busty enough. That's really easy. You know if he hated my diabetes, and I would be hating me, and I don't need that. I'm awesome.
Stacey Simms 24:53
You are awesome. But I have to ask you before we wrap up here, tell me about your blog, because I'm good. I always mess it up. Diabetesaliciousness. So where does that come from? And I love it.
Kelly Kunik 25:06
Okay, first of all, I'm such a dork. It was supposed to be called diet. I was supposed to be called diabetes-licious. Now when I started blogging, which will be 10 years in November, Oh, great. Go figure that one out. I had no idea what blogging was. Okay? None. It just looked like a Word file. And I could do a Word file. I couldn't create a website. That makes any sense. Oh, yeah. And blogger was essentially a fancy word file, right? He could upload pictures too. And there was always this thing I'd say, Oh, so diabetes-alicious. Like if I went surfing, and I got out of the water, and my blood sugar was like 125. So I can go to low diabetes-alicious. Or if I went out to dinner, and I had a big dessert, or maybe it was dinner in an Italian restaurant, which is always a bit of a challenge for me, pasta wise. And I checked my blood sugar a couple hours later, and it was like 170 like, Oh, that's fabulous. I nailed it. So it was always kind of a goal. Diabetes-alicious is always a goal to achieve was always just hitting the norm in my life, doing my normal everyday things, but celebrating it, you know, again, if I eat a pasta dinner, and two hours later, I was 175. That's pretty. That's like Nirvana. You know what I mean? Oh, yeah, totally Nirvana. It was diabetes. Delicious. And so I started to fill out the blog information that I wanted to do. And at the end, right before I hit Enter, I put the n e s s so made it diabetesaliciousness. I changed it. Because let's make it more difficult to say and pronounced. Why not? Again, I had no idea what I was doing. The only blog I'd ever read was Perez Hilton. And I didn't even know it was blog. I thought it was a gossip website.
Stacey Simms 27:02
And it's hard to imagine, right? But in 2007 we weren't even on Facebook. I mean, you know, it was so different.
Kelly Kunik 27:11
It was so different and I had now I can't change it. And I even change it on the business cards I had printed up I actually put Diabetes-alicious people are like what so if Diabetes-alicious never like diabetes, delicious. ness. Or you could just say Diabetes-alicious. I mean, I know it's a bitch to spell. It's my own fault. But it was 2007. I didn't know what I was doing. the interwebs was a new and exciting place. I didn't know there was a diabetes online community. Seriously. I had no clue.
Stacey Simms 27:46
Why did you start that? What made you jump in?
Kelly Kunik 27:49
You know, I had last a long term relationship. And I'd love to career. And I believe it or not, I wanted to sell insulin pumps, right? Because I really felt like my I had been pumping since 2002. I come from a family of sales reps, and performers, to basically like there's no doctors or lawyers in my family. We're all like salesman, performers, for teachers. And I was always the example that doctors would use, like, you got to meet this patient. She's doing really well. My doctors would have me talk to teens. And parents would stop me when they would see my insulin pump at the drugstore and haven't talked to her children. And I thought I really felt like insulin pumping changed my life. And I thought, well, I want to sell these things. And I sent my resumes out and nobody would talk to me. Nobody. And I had a marketing background and a writing background. I worked for several local newspapers and magazines, and I was a writer. And someone had mentioned blogging, or personal journaling. And I thought, oh, okay, hmm. And then of course, there was the whole like, a celebrity said they wean themselves off insulin and I got really mad at that particular celebrity. And I started this blog and then didn't know what I was doing. And I ended up calling this celebrities publicist in the LA in New York often, and I think I frightened the gatekeepers so much at both offices that the publicist ended up calling me back. And we played phone tag, and I ended up speaking with the publicist and saying, look, I think so and so was misdiagnosed. And this Oscar award winning person can be misdiagnosed how many other people can be misdiagnosed, and I really do think that's the case. But I was also upset because I knew of several young women with diabetes Lamia, whose parents had mentioned And this particular celebrity, as someone to aspire to. She has type one diabetes and look how great she's doing. And when I tell you I used to have parents come out of the woodwork and still do to talk with about their children to me. I mentioned that to the to that publicist, I said, Look, I don't know if you're aware of this thing called by Alenia. And it's very dangerous. And it's detrimental health, mostly it's women, young girls, and women with Type One Diabetes. But, you know, I know that young boys and men are awesome. And anybody can have it, you know what I mean? And so there has to be a better way to articulate that. And I really think if she came out with a statement, and again, I'm not blaming this particular celebrity, I think that's on the onus of the publicist. And she just wouldn't budge. And it got me so angry. And I think that was my first blog post. And I didn't know what I was doing. I just used it as a writing exercise every day on a subject that I knew intimately. And nobody read it. Except my friends. And I can tell you, the first person to leave a comment was Bernard, Errol. And that was like two and a half months after I started blogging, and I didn't know that this community existed. And when I found it was pretty life changing. So I'm very lucky. You know, but I had no idea what I was doing. I certainly wouldn't have made such a crazy name.
Unknown Speaker 31:40
Kelly Kunik 31:43
Like, I had no idea. I just knew it was this great outlet for me to get all my feelings out. And I didn't even realize how badly I needed that until I started doing it. Yeah, we should I learned so much.
Stacey Simms 31:59
Oh, of course. Yeah, let's circle back to Halloween. Because there's so much we can talk about in Kelly, I'll have to have you back on. But let's circle back to Halloween. Because, you know, we're talking about food and food issues, and everybody has food issues anyway. And then if you have diabetes, it's a more food issues on top of food issues. So if you're talking to people who want to trick or treat or parents of kids, and they're worried about this holiday, any any last advice here on just kind of keeping it fun. And making it as normal as it can be?
Kelly Kunik 32:30
for Halloween is a great holiday. It's really fun. It's an imaginative holiday roll with the imagination part of it. If you have more than one child, the rules apply for all you know what I mean? You can have a little candy while we're trickers reading, you can have a CHOPolate bar, whatever I know, a lot of you know, we have our check stations, right? Check our blood sugar's if you're on a deck, it's a little easier, right? On the Dexcom. So that makes it a little easier, and really enjoy the moment and don't dread it. And if you're going to dread it, don't dread it in front of your kid. Especially your kids with diabetes. Like Don't do that to them. Because they can't necessarily differentiate that you're dreading the diabetes aspect of it, and they're gonna internalize it and take it personally. Does that make sense? Oh, yeah. It's just like, it's like, children don't understand when you're upset at the number on the meter screen. They think you're upset at them. Okay, so what happens? You find ways to change the number. I did. And, you know, I went and check my blood sugar with one hand, the number would be lower. You know what I mean? Like their kids can't tell the difference. Whether they're 10 or five, they can't tell the difference. You're mad or you're upset. I should say you're upset at the number on the screen. They think you're upset at them. They are diabetes. I mean, I do. They're dying. Yeah. And I think it's, yeah, and it's, it's so important for parents to know, at least I think it is that you got to put your game face. You can say, I'm going to be up checking all night. This is crazy. Don't say it in front of your kid. Don't say it in front of your kids. Just do it. Just do it. Like, honestly, that's not fair. And I know, parents, they go through a lot with this disease. I saw what my parents went through and they didn't have the technology nor did they have this supportive community. I don't know how they survived. But you got to keep your game face on. You got to make it fun. You have to make it fun. And just do what you have to do and that your kids take part in it. Hey, look, could you do me a favor? Could you check your blood sugar? Like, let them participate? What's the carb on that? Do we know the carb? Here? It's on my phone, look up my list, like something like that. You know what I mean? where, you know, kids like to help? You know, they have to know this stuff, too.
Stacey Simms 35:16
Oh yeah, we're on. So what do you do for Halloween? Do you still get dressed up? Do you
Kelly Kunik 35:21
know? I did last year I wanted to Abby from NCIS was really fun. Great costume. I've done that a couple years ago, cuz it's just so much fun to wear. I don't know what I'm doing this year. And again, because I've been so focused on what's been going on in our world and healthcare and things like that. And hurricanes. I haven't had a chance to focus. You know, I'm hoping I can get together with friends, at least. And then we kick off into world diabetes day. And it's a really big whirlwind for me, I hope to do something fun this year. And I haven't been thinking about it. Because there's been so much leading up to this where I'm living like I said, it's the five year anniversary of Sandy's on the 26th I want to say, and they're still part of my town where like, people are trying to get back in their houses their homes. Yeah, so the past few years, it's been a little bit. My focus has been split. Which is good, because it's not all about me, even though it totally should be.
Stacey Simms 36:28
Well, well, let me make it about you. Because we're airing this show. As we're talking here, a little louder. This, but we're airing the show on your 14th die aversary. So from all of my listeners, to you, yeah, we're sending you a gift now we're congratulations. Thank you so much. Well, I'm gonna put this all over social media. And at least we can give you a big Halloween. Congratulations and way to go and everything else because it should not go unnoticed. I just think you're wonderful. Kelly, you do so much good for our community. Your is so much fun to talk to. I hope
Kelly Kunik 37:02
you have a great Halloween. I hope you did, too. And thank you so much. I will go have a glass of Prosecco for sure. And I will toast it your way. And I will tell you what in the DSC because honestly, I can say it's the best medicine and I am so grateful to be part of it. And you do such a phenomenal job. It's just so fun. And voc is amazing. And I really feel like sometimes when nobody else gets it, I just know that I can turn to my community. And you guys get it. And I don't even have to utter the D word. to just be like, Hey, guys, I need your vibes and I get it. So I appreciate it so much. And I love everyone and I love what you do. So keep up the great work. And hopefully we can all have a little celebration together soon. Thank you for doing this show though. I think it's gonna be wonderful and help a lot of people and as all your shows do, and Iraq.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 38:15
If you haven't read Kelly's blog, now you have to right go head over to Diabetes connections.com. I will link up diabetes maliciousness in the show notes. And I'm just so happy to bring Kelly and her story to a new audience a couple of years later. So we'll see what the reaction is to these classic episodes. I'd like to start releasing them doing things like this regularly in the new year. So let me know. Have you heard all 330 plus episodes of Diabetes Connections? Or have you joined us more recently, and you're looking to catch up by you know, having something like this come right to you. Because that's what's nice about these classic episodes, you don't have to search for them, they will come right to wherever you listen, whatever podcast app, they'll come up as new. And I think that'll really give some new life to these episodes that I love and are so dear to me. And our newer listeners haven't had a chance to hear. So I'd love to hear from you. Let me know what you think.
Our regular episode is coming up on Tuesday. We drop episodes generally once a week on Tuesday, with bonus episodes here and there. And I am talking to Leo brown from The Amazing Race. You may have spotted his Dexcom and the episode that aired that very first episode of The Amazing Race. There was a racer, he took a shirt off there was his Dexcom and the diabetes community lit up so I was able to get in touch with him. We had a great conversation, and that is coming up on Tuesday. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here on Tuesday. Until then, be kind to yourself.
Unknown Speaker 39:56
Diabetes Connections is a production of Stacey Simms media. All rights reserved all Wrong avenged
Helene Cooper has type 1 diabetes, asthma, and she's Black. All of those factors increase her risks if she catches COVID 19. They're also exactly what the researchers behind one of the vaccine trials were looking for. She's now in that Phase 3 Trial and shares what it's been like.
Helene is also a reporter for the New York Times, covering the Pentagon and has an incredible story that began well before she was diagnosed with type 1 at the age of 15. She and her family fled here from Liberia in 1972.
In Tell Me Something Good, a few high profile birthdays and diaversaries
Plus, Innovations – see through is your organizational friend.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week taking part in a COVID vaccine trial. Reporter Helene Cooper has type one and asthma and says she decided to apply after she met Dr. Anthony Fauci backstage at Meet the Press. She says at first, he wouldn't really answer her questions about her odds
Helene Cooper 0:44
And finally, he just he was standing by the door to go on air as we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really need to not get it. Oh, God, I really need to not get this.
Stacey Simms 1:00
Helene is now in a phase three vaccine trial. She's a New York Times Pentagon reporter and talks about what it's been like doing her job and living with T1D during this pandemic
in Tell me something good a couple of high profile birthdays and diversities plus innovations. Why see-through is your organizational friend.
Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. That was back in 2006. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that's how you get the podcast.
There is so much in the news these days about the potential for a COVID vaccine. news about the trials political news about vaccines. This episode is a personal story about one woman's experience going through one of the vaccine trials. So I just want to let you know about that right up front. And a big thank you to Gillian McPhee, who in the Facebook group Diabetes Connections The Group shared the article that Helene Cooper wrote about her experience getting into the vaccine and a lot of what she shares here on the show, but I will link that up.
I reached out to Helene on Twitter, and she graciously responded. Now Helene has an incredible story, even before she signed up for this trial. I mean, well, before she was diagnosed with type one at the age of 15. She and her family fled here from Liberia. And I'm going to link up that story in the show notes at Diabetes connections.com. It'll be on the episode homepage. I'd really urge you to read that.
But one of the problems with the vaccine trials was all of the COVID vaccine trials is getting enough people into them. I'm also going to link up more information on that and I'm going to come back after the interview and talk a little bit more about it. I know you want to hear from Helene. And we'll get to that in just a moment.
But first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern beater My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is doing us all a huge service by participating in one of the trials for the COVID vaccine. As we recorded this interview, Helene Cooper had taken the first shot. She is due for the second in just a few days as this episode airs. Helene is a New York Times Pentagon reporter, but she says that's not why she was selected. She explains it is because she lives with type one, she has asthma, and she's black. There are not enough people from any of those groups represented in any of the vaccine trials. I tried to cover a lot with Helene and as this is an ongoing story. She was gracious enough to agree to come back on maybe a couple of weeks that she's further along and share more about her experience. So here is our talk.
Hello, and thank you so much for taking the time to talk to us about your experience. I really appreciate it.
Helene Cooper 4:35
I'm happy to be here, Stacey. I've never been asked to talk to diabetics before. So this is kind of cool.
Stacey Simms 4:40
Oh, nice. Well, I always like to tell guests like you that you don't explain the difference between type one and type two. We speak the language. We get it. I'm just so interested in so many of your experiences. But let's start with the COVID vaccine trial that I saw that article came to my attention. How did you get in the trial to be If you could kind of start from the beginning,
Helene Cooper 5:01
okay, I was watching Dr. Fauci on testify, I think it was before the House. It was either July 30, or the 31st. And he said that all of these vaccine trials were getting underway. And he said they needed volunteers. And he rattled off the name of a website that you could go to to volunteer. I don't know why I did it. But I just went on to the website, and I filled it out. I said, I was type one diabetic, I put that I have asthma I did. I filled everything out and went on about my business. And then a couple of weeks later, I was in the Outer Banks. So it was like, it was somewhere around August 28, the week of august 22 23rd 24, something like that. I got a phone call on my cell phone from GW from a clinical research associate, who said I had been picked for the Maderna trial.
And then I got nervous, because it's like, it's one thing when you fill out the questionnaire, and you think they're never going to call you and then they call, she said that I've been picked because I was type one diabetic, they needed to see if the vaccine was safe for people like me, I asked her a lot of questions. Because my first fear that a friend of mine had put in my head was what if they give you the vaccine, and then send you to like a high risk area and ask you to wander around without a mask or anything like that. And I thought, Well, I'm not doing that.
I've been super careful for the past six months, because I think we heard pretty early on, I still remember that sinking feeling in my stomach back in February, and March where they started talking about the high risk people and seeing diabetes. And it just said diabetes, it didn't say type one or type two, which drove me crazy, because it's like, these are two different diseases. And do they mean but whatever.
When I saw I had run into Dr. Fauci back in on March 8, when I was in the green room for a Meet the Press episode. And the first thing out of my mouth, I walk in, and he was sitting on the chair, and it's like, wow, look, it's like I recognized it from TV. And I was I immediately started talking to him about COVID, because that's what he was there to talk about. And I was like, Well, I'm type one diabetic and blah, blah. I was like, you know, what happens if I get it? And he was like, he kept. He wasn't beating around the bush. But he kept saying, you need to not get it. And I was like, Yeah, but what happens if I do get it? And he was like, No, you really need to not get it. And he wasn't he wasn't answering my question, but not answering my question. And I wanted to know like, okay, most people get it and there's a 98% chance they'll be fine. My like a 93% chance or what, exactly what, and finally, he just seems standing by them. He'd walked out the door to go on air, because we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really needs to not get it. Oh, God, I really need to not get this.
So I have covered the Ebola pandemic in Liberia. In 2014. I didn't Liberia for a month during Ebola I and at the time, I understood then that I really needed to not get Ebola as well being a type one diabetic. So I put into place my Ebola protocols. I think I called them on March 8, where I was washing my hands all the time, I was staying away from I stopped touching people. I was I've been and I've been really careful. I wear masks. I only just now recently stopped wearing gloves everywhere I went that I had been doing that for a while. And nobody's come into my house except my mom, my sister and my nephew. And brother in law. I'm like, so I'm probably much more careful than most people are. Because I think we kind of have to be because there's so much we don't know, I'm just rambling at this point, not letting you ask any questions?
Stacey Simms 8:41
No, it's wonderful. A lot to unpack there as Yes. So let me go back when you said there's not a lot of information about type one and type two, we you know, in the community, we're talking about that all the time.
Helene Cooper 8:52
Yeah. One of the things everybody I've asked about it has said they don't because I went to my normal diabetic doctor, and I was asking her about this. And she said the problem they don't know. All they know is that the people who showing up in the hospitals and needing to be put on ventilators and leading and having severe reactions and get you know, and you know, getting really sick and dying. A lot of them tend to be diabetics, but then I asked, you know, are they type one are they type two, and they're certainly type two, but she seemed to think that they're type ones as well. And that's what this is based on. This is at this point. There's so much about Coronavirus that we don't know COVID-19 that we don't know. And so the whole high risk category for diabetic that has been determined simply based on the fact that these are the people who are showing up in the hospitals.
Stacey Simms 9:46
So let's talk about the vaccine trial, get the call.
Helene Cooper 9:49
I get the call. I freak out. I call my friend first I called my normal doctor but she's very super cautious and her response was like Why does it have to You. So I was like, Okay, I'll Park this somewhere for a second. And I called my friend, Kendall Marcus, who's an infectious disease specialist. Her response was immediate, she was like, vaccines are super safe, you should do it. And for Kendall to be just complete, like, usually she's cautious, too. And she's like, you got to be careful. But it was just complete. No, you should do it. And so I got a, you know, we talked through it. And she, you know, explained some very complicated sounding stuff about how they work because I thought they were going to be putting a little bit of COVID in me, and but she said that the modern no one was not that is messenger RNA is basically tricking your body into making antibodies by feeding you a little bit of mRNA, that makes your body think that it has COVID. So she was like, there's no chance that you could catch it from this, when there's no chance that you could give it to anybody from this.
And so I went, I showed up for my appointment, it was on a Wednesday, they give you it's, you're there, I was there for three hours, they gave me a COVID test, the nasal swab, because if it comes back positive, you're not going to be in the truck, because there's no point of you being in the truck. They gave me a lot of time, they gave me a full physical, took blood made me take a pregnancy test. There's all this stuff. And towards the end, then, is when I got the shot where the doctor was like, Okay, you've been randomized, you know, the blind woman is like the double the unblinded person is coming. Because of course I hadn't read they told me all of that in a sheet that they sent me that read talking about that, which is my own fault. And then the nurse came in with the vaccine, and she was not even looking at me and as a reporter, I'm, like, filled with questions. It was like, Are you kidding me? Like, is that what is that? Is that the placebo? Is that the vaccine? Which one? Is it? Going through all of this? I want to make sure I you know, I'm getting the vaccine, I know placebo, and she was just like, you need to just, you know, she said nothing.
Stacey Simms 12:00
Well, yeah, if anybody else knows besides that person, then it can be, it can ruin the whole study!
Helene Cooper 12:07
I got so much s--t from people when I put that in the article that I was harassing the woman about this dude, like you're violating the sanctity of the study. But it's just like, you kind of want to know if you got the placebo vaccine. When you posted your story in my facebook group for the podcasts. People were very well they Yeah, not pleased. No.
Stacey Simms 12:30
But I can tell your personality, right? Yes,
Unknown Speaker 12:33
you can laugh. No worries.
Stacey Simms 12:36
One of the questions that actually came up in the Facebook group was whether you were the only person with diabetes in the trial. Now obviously, you don't know anybody else.
Helene Cooper 12:42
But it was. I am not because ever since I wrote that story I've gotten a lot of people have tweeted me, including type one diabetics were in the trial who have been and there's this one guy who's been so great, because he's like, let me tell you what happened to me I'm in the same type of trial. It's like his was with Pfizer. I think mine is butchering it, but it's the same technology. And he was like, the first shot felt totally normal, just like you and then the second shot, my sugar level shot up, I was sick for 36 hours and then it went away. And he was like, but it was just as if I had you know, how you get when you're diabetic with a flu, your sugar level goes high and all that kind of stuff. I was like, that means you got the vaccine. And he was like, well, be careful. You know, because just the cuz you sound like you don't think you're You got it, but I didn't I didn't think I got it when I got the first shot. And the second shot was like, Huh, so now I'm worried about the second shot.
Stacey Simms 13:32
Well, I was gonna ask you, did you have any kind of reaction blood sugar wise to the first one? Nope, nothing. I mean,
Helene Cooper 13:37
just some aches and pains. Um, some muscle joint, which I don't, I think was because I was camping on the beach. And I got like the the I got the stuffing pounded out of me by these ferocious waves was
Stacey Simms 13:51
curious if you asked your friend who said what if they give you the vaccine, and then they want you to test it by wandering around a hotspot? I can't imagine that's actually part of any clinical trial.
Helene Cooper 14:02
I would think wouldn't you do that in phase one? It's not part of phase three. But what's the What is it? Wouldn't phase one be remember? Did you see Contagion?
Stacey Simms 14:14
Right. But she did that on her own?
Helene Cooper 14:16
Yeah, but they got it tested some kind of way. How are they going to find out if it works if they don't see if it works? If they don't expose people to it? Yeah, shape or form. I mean, he was getting at. I got a lot of grief for that for putting that in the story. But I thought that was a very legitimate question to ask. And as a non medical person, that's what you're gonna wonder.
Stacey Simms 14:42
Okay, I'm gonna jump in here for just a couple of minutes. If you are wondering about that point yourself or maybe you are screaming at the two of us in frustration. Here's the real deal about how they do vaccine trials. Once participants get a vaccine will the researchers intentionally expose them, right? That's what we're talking about here. Will the researcher send a lien into a crowd of people as in the movie Contagion? Which, if you haven't seen it, it's a 2011 movie. It's all about if you haven't guessed, it's all about a pandemic. There were scientists who worked on that movie and made it very realistic and therefore quite terrifying. But to the question of did they send people who got the vaccine out into infected crowds? No, of course not. That is unethical.
I did a little bit of looking into this. And so here's what most of the publications say, because there are still no effective therapies to prevent someone exposed to COVID-19. from falling seriously ill intentionally exposing patients is a no go. Instead, the idea is to observe the number and severity of naturally occurring infections. Among the many thousands of volunteer participants who receive vaccines, or placebos. If there are notably fewer infections, or milder infections among the vaccinated group, that's how they tell the vaccine is working.
So I want you to take a moment and clarify that and we will go right back to my talk with Helene in just a moment. But first, diabetes Connections is brought to you by Real Good Foods. We've been enjoying Real Good Foods for almost two years now. And I got to tell you, I think with all of their new products, everything's great. But the pizza that we started with is really still our favorite. And we got an air fryer A while back. And that has really taken stuff like this to the next level. Although my I shouldn't say that because my husband still prefers to heat up the pizza, in a frying pan, or saucepan, kill, just heat it up that way. I don't know, maybe he doesn't wanna get the air fryer out. But to me, it's crisp beer, it tastes better, one less pan to wash at the end of the day, you can find out more about where to buy Real Good Foods. Our whole line is available in Walmart and local grocery stores. You can also find everything online, go to Diabetes connections.com and click on the Real Good Foods logo.
Now back to my conversation with Helene, where we are finishing up talking about that movie Contagion. And obviously, that movie was worked on by experts.
Stacey Simms 17:14
We've all heard all those stories but I haven’t watched it
since COVID. Started, I can't bring myself out
Helene Cooper 17:16
a good No, you gotta go do it. I did it. And I like it'll, it'll, it'll make you even more careful.
I watched it in March. I was like, Oh, hell no. Stay. Oh,
Stacey Simms 17:30
I will. Alright, I'll have to go back and look at that, then what happens? Is it a second shot? And then you're done? Or do you? I mean, they'll follow you. But are you done? Not
Helene Cooper 17:38
that they follow you up? Um, there's an app that you have to answer. The first week, the app was making me answer questions every night, take my temperature and all of that. And then it's gotten bored with me, and it stopped now. So I haven't gotten any good. So then you have the second shot. And they follow up with you. They're supposed to call you every week. And you answer questions on the app, and they just track you. And so presumably, it's a two year study. But they're shooting for, you know, a few months. Yeah, very quick.
Stacey Simms 18:11
And because they're they wanted to look at people specifically with diabetes. Are they also asking you to track blood sugars and things like that? Or they're just looking for safety?
Helene Cooper 18:19
or remotely related to but which I find curious, because that's like, they have not the questions or fever, body aches, pains and all of that they didn't that none of the questions are because the questions are all for the 30,000 people. So they're no special. I'm not in a special diabetic subgroup. But
Stacey Simms 18:37
it's interesting, because you are in three subgroups, diabetes, asthma, and being a black person. Yeah. So as you said, they were looking for people, you know, do you know if they were successful trying and this is gonna sound? I mean, I asked this question they were looking for
Helene Cooper 18:53
they I don't know the answer. They at GW moderna paused its trial to expand it because at first they weren't getting enough black people. So they went and cast the net, even wider. And I think they believe they've now got a representative sampling. The people at GW said that they felt that the sampling that they were doing reflected the city of Washington DC, which means then that they had a high black population.
Stacey Simms 19:18
So listen, you have a job that I assume you cannot do, only from home. No, I can't Pentagon is your beat.
Helene Cooper 19:25
I'm home a lot. And the Times went to, you know, to send us home back in March, march 13. And they're really good about that. And I do a lot of my job right now I do at home, but it's so different. It's harder, and I do have to go to the Pentagon and I do meet sources. And so I wear the tie I was issued and 95 masks by the times and you know, full, you know, kit, full kit and 95 mask. And when I go to work, like during the protest, for instance, I did some a little bit of that went to the Pentagon when I go to meet for sources and all of that Especially when you're at the Pentagon where you have to wear a mask in the building. A lot of people don't wear masks inside their individual offices. I've been in to meet with top generals at the Pentagon who have you in the office, but they're not going to wear a mask, they will take your temperature, but I don't think I think that's pointless. Yeah, test your temperature. But once you're inside, and then they'll always say, Oh, don't you can take off your mask if you want, but I never do. And I, that's when I wear that. And 95 because that will protect me, not just because you wear a mask to protect other people primarily, but the N 95 will protect you.
Even before COVID I'm curious, you know, a high powered career very busy, but also very much in when you work at the Pentagon, you're not fooling around, I'm curious if you would share a little bit about how you manage type one. Sure, your job, you have a son who's type one, so you know that it becomes like brushing your teeth, it's just something you do. I'm testing myself, you know, eight to nine times a day, I'm taking multiple shots a day. And that's just something and I've gotten really used to, I test in front of anybody, I don't wait, I don't like you know, I don't go, my sister laughs at me because I take my shots through my clothing, because sometimes you can't, you know, the needle, go through your clothing. And if you're on an aircraft carrier in the middle of something, you don't have time to go find a bathroom to you know, whatever.
And it's a long time ago, one of a doctor, Dr. Joshua barzilay, in Atlanta, when I was I just moved down there in my 20s. And he said, you know, you have a choice, you can make the diabetes conform to your life, or you can make your life conform to your diabetes, and I made a choice, I was going to make the diabetes conform to my life. So I've done everything I was embedded in with the third infantry division for the Iraq war I was I've been, you know, with all special ops groups, you know, behind enemy lines, I do all of that kind of stuff. And I just I keep a tight rein on my sugar levels. But there plenty of times where I have problems, you know, I've had insulin reactions, thousands of insulin reactions there. Because if you keep in control, you're very close to low, right? You know, if you're keeping between 80 and 120. It's, I've never gotten to the point where I have figured out how to keep between 80 and 120 and not have 60s, you know, you're running around at 300 400, then yeah, you're not gonna have insulin reactions. But if you're keeping in control, then you're gonna hit lows. And so I hit I hit lows, lucky in that I still feel them. I can tell when it's coming on. I carry sugar pills around with me everywhere. They're sugar pills. In every pocketbook. I have their sugar pills in my fanny pack their sugar pills everywhere. And that's sort of how I deal with it. And so I feel fine. I've had it for what I'm 54 years old now. And I got it when I was 15. So that's a long time. I haven't had any of the my kidneys are fine. My You know, my eyesight. I can't see for s--t. But that's not because I mean,
Stacey Simms 23:11
we're all wearing glasses.
Helene Cooper 23:12
Yeah. And everything so far, knock on wood looks okay. But it's something that you just you just deal with you. I mean, which you know, I assume because you've got a son who's just dealing with it.
Stacey Simms 23:23
Do you use any tech? Or have you seen either technology insulin pump CGM, stuff like that, not your style.
Helene Cooper 23:28
I don't like the pump. I tried the pump. And I didn't like it. I tried the continuous blood monitor. And I didn't like it. So I still I use pens. I have a mantra for my long acting, and I'm on human log for my short acting. And then I have the one touch you know, and I it's five seconds. And it's really easy. My doctor is so pissed at me because she's been after me for two and I won't do it. And every year she's like, Look, it would be so I tried to Dexcom and I hated it. It's waking up in the middle of the night and striving you not. And so I stopped after one month. And so she's I mean, I'm probably gonna fold at some point, but I haven't pulled it yet.
Stacey Simms 24:06
Well, I wouldn't call it folding if you want to try it jump into the group or I know you know what you're doing. But there's some advice on how
Helene Cooper 24:12
to not make it drive you up a frickin wall. Because it? I mean, yes. Oh, I would like probably that advice, because I think at some point, I'm gonna have to just do it. Well, that's another story.
Stacey Simms 24:22
Yeah. Tell me about your diagnosis story. You were diagnosed at 15.
Helene Cooper 24:26
Yeah, I my dad was diabetic. And for some reason, I think he was type one. I don't remember his type one or type two. Because he died in 1985. And I think he was type two, but he was taking insulin regularly and fairly aggressively, which makes me think maybe he was type one and we just didn't, I don't know.
Stacey Simms 24:46
So yeah, it's at that time, too. They didn't know about Lada and all the other things.
Helene Cooper 24:50
He was diagnosed when he was like 40. So that's, I think that's why they But anyway, so that's a whole nother set. Let's not get in. Let's get into what I know. Anyway, My mom, as it turns out, now it's type two. I'm from Liberia, West Africa. And my family had moved here in 1980. I was living with my dad, my parents had split up. My mom was back in Liberia for a year and we're living my sister and I were living with our dad in North Carolina and Greensboro. And I started running to the bathroom and being thirsty all the time. I was like, 15. Then I was a junior in high school, and I started dropping weight. I was skinny. But then I got really skinny. But I thought I was but I was eating. I was so hungry all the time. And I was convinced I had blown up because I was eating like seven meals a day, and horribly hungry. And in the middle of night, I was going downstairs and drinking apple juice and eating food. And I was like, I have to be so fat. Why am I eating like this? And my mom showed up to visit us and she came to the house Liberia and she my dad came to the school to surprise me because we didn't know my mom was coming. And they came to the school to surprise me. And they got me out of my class. And I go running. I was like, why are you living with me? And he's not noticing because you're seeing the person every day
to the doctor, and I was diagnosed and I was ended up in the hospital for a week in pediatrics.
At 15 I was very outraged that they put me Yeah, true. Yeah,
Stacey Simms 26:27
I bet but they're also at 15. You have no sense of your body, right? Your thumb. Oh, yeah, I'm eating
Helene Cooper 26:33
That's amazing. Yeah, I was so convinced that I was a pig. I was like that it was like all whatever. But anyways, so that's when, and so I remember they put me on this is so far long ago is like the 80s. They put me on these three different types of insulin to start x rapid, semi tard, some other top monitored, and I was having instant reactions and then shooting up and they were trying to I would take one shot in the morning. And that was it. And I couldn't get it under control. I was I was hungry all the time. Because they had they started me on too much insulin. And so I was hungry and eating. And it was just really it was bad. And I was only testing that's back when you would test with urine. Yeah, this is all before, this is a long time ago. And so I took my insulin, but that was all I would do. I would take my insulin in the morning, but then I ate whatever I want it. And so I was completely out of control. And it took years for me to get my act together. I mean, I went through college, you know, I feel like on a wing and a prayer, I took my insulin. So I never got went to the point where I didn't take my insulin, but there was a lot of but I was eating whatever I literally whatever I want it. And it wasn't like it was that much. But it was like you need to be 10. And I wasn't testing I would go like here and test myself. And then when I got out of college, I started a job in Providence, Rhode Island. And I was working out a lot then. So things my sugar level was probably much better in was lower, but I was having insulin reactions all the time. And then when I moved to Atlanta, and I met this doctor barzilay. And that's when he told me you can do this, or you can do that. And what he did for me that was the most important thing was if you are comfortable with taking multiple injections a day, and with testing yourself all the time, you can do what you want. And that was the that was the breakthrough for me.
Stacey Simms 28:30
Right? Well, somebody gives you a plan of action, rather than saying, here's the older insulins that really don't work to your life. Here's a man. No, you followed that.
Helene Cooper 28:39
Yeah, better. No, it was great. Because once it's like, once I realized it was like if I know a knowledge is power, he if you're willing to take the shot, it's nothing I don't, it doesn't bother me. And testing my blood sugar doesn't bother me. And if he sees like, if you're willing to do that you can do you can live the way you want to live. So it's great.
Stacey Simms 28:59
Before I let you go, I'd love to talk a little bit more about the clinical trial. Okay. very beginning of it. Are you so far happy that you did it?
Helene Cooper 29:07
Yeah, I'm happy I did it. I want to be part of you know, I want to be part of the solution. No, I've none of us want to keep this going for it's like, we're all shut in and we want it over to right. And it's at some point with the you know, we're gonna have to take a vaccine anyway. So yeah, I'm glad I did it. Whether it's a placebo or a vaccine, I'd be if I dropped dead from it. I won't be glad but that I'm gonna be glad I did it. Right.
Stacey Simms 29:33
Well, there was a lot of skepticism. Yeah, people of all political persuasions, yes. races of all disease states. I mean, let's be clear, not singling anybody out here.
Helene Cooper 29:43
Any message for people listening who may have an opportunity like that to take part in a clinical trial and are hesitant follow the iron. You know, that's I'm I'm a big believer in science. So that's, I'm divorcing myself from the politics. I you know, the whole vaccine by election. De that's not even going to happen. That's irrelevant, you know, even if they have somebody, at most be an announcement, but that's not going to mean anything. And that's meaningless, you know. And so just stick to the just follow science. If we follow science, we'd be better off on COVID to begin with, and science is certainly what's keeping me alive. So,
Stacey Simms 30:19
next step for you is the second part of the vaccine. And then maybe we can follow up with you in a couple of months if that's okay. Happy to wonderful
Helene Cooper 30:28
and I'll be complaining that death they definitely gave me the placebo.
Stacey Simms 30:32
And I can give you my review of contagion.
Helene Cooper 30:34
My re review. Okay, you if you watch contagion, I will come on your show again. Alright, we'll do I've
Stacey Simms 30:39
seen it, but it's been a very long time. So we watch it. Oh, you
Unknown Speaker 30:43
won't sleep that night.
Stacey Simms 30:44
I don't sleep now. Helene, thank you so much for joining me. It was a real pleasure and so interesting, I appreciate it.
Helene Cooper 30:51
It was fun talking to you, Stacey.
Unknown Speaker 30:57
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:03
More information about the Vaccine trials and about Helene story at Diabetes connections.com. Just click on this episode, click on the homepage for it. There is a transcript we do that for every episode starting this year, really excited about that people seem to really like it. And I started that in January of 2020. And I'll continue to do that.
I'm also going to link up one of the many articles about the difficulty that scientists have had and researchers have had in recruiting black volunteers and other people of color to take part in these trials. And something to keep in mind is that the National Institutes of Health has suggested minorities be overrepresented in the testing at rates that are doubled for their percentage of the US population. So there's a lot more information on this as to why and how historically black medical institutions are getting involved. I thought that was very important.
You know, of course, we're looking at this through the lens of type 1 diabetes. But this is something that as you listen, I think it's important to be aware of as well. And boy, do I appreciate her coming on and sharing her story. the good, the bad, the ugly, she got a lot of pushback, as you heard for that article. And I will follow up in a couple of weeks. And I'm assuming she will have the same amount of candor. Next time we talk.
Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And you know, we started using control IQ that is the Dexcom G6 Tandem pump software program back in late January of this year, and we're doing less work for better results. I'll say that again. less work better results with diabetes. And I say we but it really is all Benny at this point. I mean, he's 15. And you know, you think about when we first got the CGM just to show up on the pump. What was that 2017. And that was a cool feature, but it didn't do anything right. But that secret sauce in the control IQ that keeps Benny in range so much more. It really lightens the burden. I think that's the best way to describe it is a one C has come down it was already really good. We're just thrilled. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
In Tell me something good this week. We have some fun things to share diversities and birthdays. A very, very happy birthday to the Dooley family and I'm going to wish a happy birthday to the whole family because parents Christina and Greg celebrating with their triplets, Mia, Isa and Max. And I cannot believe that these kids are 10 years old. You may know the Dooley’s better. As the Inspired by Isabella family. Isabella was diagnosed with type one as a toddler. And she and her family have just been a huge part of the diabetes online community of friends for life. So many things. And boy, these kids are just knocking it out of the park, each with their own personality and strengths of course and different hobbies. But they all really seem to come together to support Isa. Christina is one of these very creative moms. She does all the stuff that I never did or dreamed of doing. You know very crafty, very, very fun with costumes, lots of lawn stuff going on since they've been stuck at home I mean this 10th birthday. I'll see if she'll put a picture too in the Facebook group but you know number 10s all over their lawn and big cutouts for the kids hobbies. So a big Happy Birthday to the Dooley triplets to Mia Isa and Max.
A big congratulations and a big diversity to Dennis Goldensohn. Dennis is a longtime listener and I first talked to him he's been on the show. I talked to him about reaching the age of 65 when Medicare kicks in, and we talked when he had just finished his first year on Medicare so I will link that up but I mentioning him now because he is celebrating 50 Two years of type 1 diabetes. And he posted in the Facebook group he has that Lilly medal that they give for, you know, for big milestones.
And he wrote, Hey, everybody, thanks because he was getting a lot of really nice comments about it. The objective here is not to brag about an award, but to say yes, it is possible to live with T1D and live a productive and long life. Now that is worth bragging about and what is really possible lead by example, Dennis is also very active in JDRF. I was gonna say his local chapter, but I think we're all one chapter now in North Carolina. So he's in the Raleigh area, I'm in the Charlotte area, but he's also active as a mentor. And I really appreciate it. So congratulations, Dennis. Here's to many more healthy years. And thanks for sharing that with us.
My episode last week with Jeannie Martin, who was diagnosed in the 1950s and has lived with type one for 66 years got a lot of attention. And it was it was just very well received. I mean, why not? She's fantastic. And I heard from other people who have lived with type one for a long time, who shared their stories. And Ron Doyle is one of those. He was diagnosed at age four in 1959. I am living life well. I'm a full time employee at age 65. I'm going to retire in my 70s. My Doc's told my parents, I would likely be dead before age six, but it's been a great life. And he writes, I still have all my toes at other important extremities. And Ron also shared I showed him an email back and said, Hey, thanks so much. Can I share this? And he replied, absolutely. Most people do all the good news they can get. He works full time as an IT guy, and he has a monthly radio show on tech. I'm going to link this up because his podcast, he says is tech for us gray hairs like me, I like to stay busy, Ron writes, and I will link up gray haired tech because I don't have any gray hair yet, Ron, but I probably could benefit from your podcast. And I'll put that in the show notes as well.
If you have a good news story, a diversity of birthday something cool, you've done a big milestone you know, a marathon or you've you've got up Mount Everest, whatever you want to share with the community. Just reach out and let me know you can always find to be Stacey at Diabetes connections.com. Or you can post in the Facebook group every once in a while I will ask for more good news stories. I love hearing from you. Thank you so much.
My new segment innovation is all about tips and tricks, listener suggestions to make life a little bit easier with diabetes. And sometimes the innovations are big clinical trials approvals, that sort of thing. This week, I want to talk a little bit about organization with a great bit of advice I got from Susan Wiener. She is very well known in the diabetes community. She was the 2015 Diabetes Educator of the Year she's a registered dietician nutritionist, a certified diabetes educator, she's, she's the best I love Susan, I'm lucky enough to call her a friend. One of the things that she told me and she has a great book too. It's called the complete diabetes organizer. And well, that book has so much advice in it, we're just gonna focus on one little thing here.
And that is being able to see what you've got in terms of diabetes supplies. So if that means you're taking the stuff out of the box doesn't mean we know we get pump supplies or Dexcom supplies or even insulin, it's in a box that you cannot see through. So her advice is to put it in a clear plastic box so you can see from the outside. Or if you really can't tell at least Mark what it is on the outside, you know, tape a piece of paper and use a sharpie and write on it or use a clear plastic shoe bag, you can put individual supplies there. I've seen people put snacks in it so the kids can get what they want, you know carb counted, snacks are separated, you know, however you want to do in your household, but everybody can see. And the one thing I would add to that is whatever you do if you're taking your diabetes supplies out of boxes, and I do this because I also use
Gosh, speaking of organized, here's a little plug I use the T1Dgear, folks, there's a really wonderful small homegrown business, and they do 3d printing. And I'll link that up in the show notes as well but I use their stuff a lot. But you have to take everything out of the box, you've got to keep the labels if you need the lot number if you have an issue if you need the serial number of your Dexcom you know all this stuff. So if you don't have room to keep the actual boxes, and you're not a big like Ripper offer, a lot of people hate to keep those little strands of paper, you know, like I'll just shoot I'll rip off the front where it has all of the information or cut it out neatly. I don't cut anything neatly, I clawed off like an animal. But you could also take a photo, take a picture with your phone have the lot number and all of the information.
And that way you'll know what goes with what and that way if you have to call in a Dexcom replacement or you have a box of pump in sets that are not working correctly. You'll have the information in front of you and you can call it in it's all well and good to get organized. But if you can't see when you're running out of something, and then I know the people with little kids don't get it yet, but when your teenager uses the left decks calm and doesn't tell you and leaves The box in the storage area, right or uses the last pump inset, and just hasn't said anything. I didn't realize it was the last one. That's where the yoga and meditation comes in. So you can use these tips maybe to avoid those kinds of situations. And thanks again to Susan Wiener. I'll link up that episode to Gosh, I think it's about two years, maybe longer. Now, since we've talked, it was a great episode about getting diabetes organized. I love her.
Thank you so much for listening to this episode of Diabetes Connections. We have a lot of great stuff coming up. In fact, I have so much, I might have just more bonus episodes. I don't know I'm sifting through personal stories and sports stories and technology stuff. It seems like towards the end of the year, you know, we take a breath in August and the beginning of September, and then it's just a race to December. And that's how it's going this year. So I'll keep you posted. But please join the Facebook group. That's where I put most of my questions for you and pulling in that sort of stuff. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much as you listen, I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Jeanne Martin was diagnosed with type 1 diabetes at age ten, in the 1950s. Technology was very different back then, of course, but so was the medical community's reaction. Jeanne was told she would never have children and if she did, she wouldn't live to see her children grow up. Today, Jeanne not only has a daughter, she's also a grandmother. She shares what she’s learned along the way. We also talk to Jeanne's daughter Jessica, who talks about growing up with a parent who has type 1.
In Innovations, find out why when it comes to keeping track of long and short acting insulin, a CDE says invest in rubber bands.
Other episodes with amazing people living long and happy lives with T1D:
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:30
This week, Jeanne Martin was diagnosed with type one at age 10. Back in 1955. She's had to fight a lot of doctors along the way, including one who told her she would not live to see her child grow up.
Jeanne Martin 0:45
And my reaction was I told my husband that guy can go walk up the street and get hit by a bus tomorrow. I'm not going to go along with that. That's was my reaction. I got mad. I didn't buy into it. I didn't get depressed because I Just thought he was full of baloney.
Stacey Simms 1:00
Jeanne was right. She's now a grandmother. And she shares what she's learned along the way that made her question and stand up to doctors like that. We're also joined by her daughter, Jessica, who shares with like growing up with a parent who has type one
in innovations this week why a diabetes educator says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of Diabetes Connections. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two that was back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get this show. I spent 20 plus years and local television and radio news.
I've been doing this show for more than five years now and I don't remember Ever putting the topic of the show to a vote, but I did that for this week, I put up a poll in our Facebook group, it's Diabetes Connections, the group, I have a couple of interviews. I'm usually a few weeks ahead with interviews in the can. And I asked the group to vote on which interview they wanted to hear next, and everybody chose Jeanne, I cannot say blame you. I am always amazed at the strength of these people, the stories of people who are living well with diabetes for 50 60 70 years. I mean, you think about it, before blood glucose meters were a thing. I mean, they weren't available to the 1980s. And this was a time that we're talking about with Jeanne before some doctors would even know about different types of diabetes. I was shocked to learn that that for a very long time, it was just diabetes and you treated it with a one shot a day, or then they would say juvenile diabetes. And you couldn't possibly have that if you were an adult and you're just on and on.
And if you're new to the show, I've done several interviews with people who were diagnosed in the 50s in the 40s. And they've lived with type one for 70 years. And I will link those up with this episode. You can also search with a very good search engine at Diabetes connections.com. We're up to more than 320 episodes. So if you want to Google keywords like living long or 60 years with diabetes, that sort of thing. You can find that on the website.
Before I get to the interview. I want to read something that was sent to me it's actually a review on Apple podcasts. I'm really bad at asking for reviews and keeping up with reviews. If you want to leave one up man, I would love it. Whatever podcast app you listen on, there is a way to leave a rating or review. This one came in from Shelley. Now her name is not on this but I know who this is because we featured her. We featured her son in a recent show. So Shelley wrote I love this podcast so much. I learned so much from listening especially enjoyed the tech episodes with Dexcom and Tandem etc. As the mom of a newly diagnosed four year old. I have found much needed encouragement and tips for helping and thrive with diabetes. Also, cannon was excited to hear you mention him swimming in the lake. Surely thank you for writing that. Yeah, we talked about cannon she had sent a picture into the Facebook group about him burning off the glucose. She said swimming in the lake pan swimming is one of those ways where Benny used to just those little kids just swim with every part of their body. They used to go low all the time in the pool. It's a little bit different. Now you know, a 15 year old does not swim like a four year old. But surely thanks for sending that review in. It's always nice to get reviews like that. And if you like the show, truly the best thing to do is to tell somebody about it tell somebody in the diabetes community. That's the best way to get the word out.
All right, Jeanne and her story in just a moment but first diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth a glucose meter test strips lancets and your certified diabetes coach, subscribe today to get the test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo.
I feel like I've known Jeanne Martin for as long as my son's had diabetes. That's almost 14 years. And that's because while I have never met Jeanne in person, I have been friends with her daughter Jessica Graham for even longer than those 14 years. We met when Jessica was in public relations here in Charlotte, and I was working as a health reporter for a local TV station. And later we were on the board of our local JDRF chapter together. I cannot believe it has taken me this long to share Jeannes story. She is just incredible. I was able to talk to Jeanne and Jessica, about living well with type one for 66 years. Jeanne and Jessica, thank you so much for joining me. I've known Jessica for so long, but I don't know so much of this story. I'm so excited to talk to you both. Thanks for coming on.
Jeanne & Jessica 6:17
Thank you for having us. You're very welcome.
Stacey Simms 6:20
Jeanne, I got to start with you. Because you have lived with type 1 diabetes now for more than 65 years. Let me just start out by saying How are you? How are you doing?
Jeanne Martin 6:30
I'm doing great. I think I'm doing just fine.
Stacey Simms 6:35
What do you mind if I ask what technology you use how you manage anything you'd like to share?
Jeanne Martin 6:40
Well, I checked my blood sugar with little contrast test strips. And I shoot nice. Well, I take shots
Stacey Simms 6:49
you can say brands, we’re all friends here.
Jeanne Martin 6:51
Yeah, I say I shoot myself
four times a day. I see my doctor every six months. Well, that's about it.
Jessica Graham 7:01
She does not use a pump or
Stacey Simms 7:04
any of that. No, if you don't mind, let's go back. Do you remember what it was like when you were diagnosed? You were 10 years old. Do you remember anything about that time?
Jeanne Martin 7:13
Oh, yes, I do very much. We lived in a very small town, not far from the Mayo Clinic. We just lived there a couple years. My friend's mother mentioned to my mother that I was drinking a lot of water and going in the bathroom a lot and she thought maybe my mother should have me checked out. So we did in the small town with the with the doctor there said, Well, she's either got diabetes or TB. Well, I didn't know what diabetes was. And I knew what TB was. So I thought, Oh, please don't i don't want TB. I'll have the other and so so the little basically country doctor didn't know what to do. So anyway, so they sent me to St. Mary's, which is public Have the Mayo Clinic. And they tested me and for sure that's what I had. So I had to stay there. I think it was five years. I didn't do all this stuff with the diets. And they wouldn't let me leave until I could get myself a shot. But I was active. And I don't really remember too much about it. The doctor were very nice, and everybody was very helpful. And back then you had glass syringes and needles and you couldn't check your blood sugar. You had to pee on the stick, and they sent me home and my mother had to weigh everything, and I had to watch what I ate. But other than that, that's about it. Then I just basically went on with my life. Did you
Stacey Simms 8:46
really? Were you able to jump back in go to school, do all the things you wanted to do with that time?
Jeanne Martin 8:51
Yeah, I did.
Stacey Simms 8:52
Mm hmm. It seems like such a different time, right. I'm just trying to think,
Jeanne Martin 8:55
Oh, yeah, it was a very different time and when I first got married, Remember, I had to boil my syringe once a week, we had to do that. And I was still peeing on a stick. And I only had one shot a day back then all through, you know, school. And of course, I didn't want to tell my friends when I was in high school. That's what I had. But of course, my mother told my best friend's mother. So everybody knew it, but I didn't know they knew it. Oh, wow.
Stacey Simms 9:25
Anyway, moms are sneaky that way. But yeah. The you know, the regimen was so different. You had one shot a day, right? And then you had to kind of eat around that shot. Did you have problems as a teenager? Did you do remember, you know, any issues or were you able to buy I would assume by routine and by figuring out what to eat, you know, how did it work out for you?
Jeanne Martin 9:47
Well, I didn't run into any problems when I was a teenager. And I do remember I don't know how I would go not very often, my friends and I and I would have hot fudge sundaes. Believe it But other than being bad like that, I lived at home and my mother, kind of watch what I ate. And I didn't need a lot of sweets. You know, it was my mother's management, not mine. And I came home for lunch all during school. And I didn't start taking more shots until about, oh, I don't know, maybe 45 40 years ago.
Stacey Simms 10:23
Yeah. It's so different to think about because we're talking about I mean, if doing my math correctly, you were diagnosed right? In the early 50s 1950s.
Jeanne Martin 10:30
Right? And 1955
Stacey Simms 10:33
Yes, so the routine was completely different. I mean, as you're listening, you got to understand not only one shot a day, but no blood sugar home meters, right. You're still checking. How often did you check done by check? We mean, pee on the stick.
Jeanne Martin 10:50
I probably did it maybe once a day. I honestly don't remember that. Not a lot. It's very different now. And somehow, I think my pancreas has always worked a little bit because I don't take much insulin. And I'm very, I don't want to say touchy with it, but I don't have to take a lot. And when I was diagnosed at the Mayo Clinic, they said that yes, my pancreas was working a little bit. That's what they thought. And I still think that's the case because I just don't need much insulin. And and I watch what I eat. I do, but you know, I'm not 100% I mean, I do have cookies,
Stacey Simms 11:30
but you're told us you were eating hot fudge sundae. So the cat is out of the bag…
Jeanne Martin 11:35
That was in my youth. You know, I do take care of myself. Now. I check myself four times a day, shoot up four times a day and I watch myself better now because I know better. I'm more wiser.
Stacey Simms 11:48
I'm curious to growing up. Did you know anybody with Type One Diabetes and if not, when did you meet somebody with no,
Jeanne Martin 11:55
I never knew anybody. I didn't know anybody with any kind of diabetes. It wasn't in my family, so none of my relatives had it. No, during high school I did not know, as an adult. I have met very few type one diabetics, I know they're out there, but very few. And it's kind of fun when I do just to kind of say, Well, you know, compare notes, so to speak. Sure.
Stacey Simms 12:21
Just let me ask you a couple of questions. Because the perspective of a kid, you know, we're all adults now. But a child growing up with type one in the house and the type one is in the parent is not something that I've talked a lot about on the podcast. What's your earliest memory of your mom and diabetes?
Jessica Graham 12:38
Well, I don't ever remember it not being there. And that was more because I worried about her than it was her. There was never literally and I'm, I mean, this literally, there was never a day when my mom said, Oh, I don't feel well or Oh me, you know. My sugar is off, or I just don't feel good today, never. And so it was nothing that she did. I just knew that if mom started acting funny, I needed to get the orange juice. So I remember that I never had a problem with shots. And I think that's because I always saw you give yourself a shot. So it was just, it was always there. The other thing that I remember is that I was always told that it skipped generations. And so I do remember I don't even know if you remember this. But I remember at one point when I was little, I told mom that I didn't want to have kids until there was a cure, because I didn't want my kid to have type one. And I she got really mad. My mom never got mad. But she got upset at that and told me that was absolutely you know, the wrong attitude to have and that she had a great life and it didn't have any impact. And so that was the end of that but it was just always there. So just always a part of life. Jeanne, I'd love to hear your perspective. On when Jessica who now has a I want to say a tween a teenage Yeah, yeah. just turned 13 Yeah. Wow.
Stacey Simms 14:07
I want to hear your reaction Jeanne to when she said that!
Right back to Jeanne answering that question but first Diabetes Connections is brought to you by Real Good Foods. True story from my house. Benny came downstairs the other night, open the freezer door, looked in it close the door and said who ate the mint chocolate chip ice cream. And I had to say it was the I finished it off. Sorry, Benny. But they're Real Good Foods. Ice cream is really good. We had a vanilla chocolate and mint chip this last time I promised him I would buy more and I have to get the peanut butter kind as well. We haven't found the ice cream yet in our grocery store freezer so I get that online but our grocery store carries a lot of the meals and they are so good and super easy and basically just heat them up. If you have an air fryer. It's even better They have everything from pizza to breakfast sandwiches to bowls, these new bowl meals that are really nice entrees. Find out more, check out that mint chocolate chip ice cream for yourself. It stays frozen. They they package it up the right way. I was worried about that, but no need to worry should have known. Just go to Diabetes connections.com and click on the Real Good Foods logo.
Now back to Jeanne answering my question about her reaction. When Jessica told her she was really concerned about having children.
Jeanne Martin 15:33
Well, I didn't want her to dwell on it. And I didn't want her not to have kids. You know, it's so much more advanced nowadays. And there's so much more that they can do. And I always do hope for here. I mean, I've been hanging on that for a long time, but you never know, one of these days. No matter what your problem is. You just have to get along and do the best you can and get along with your life and not dwell on it. And I've never dwelled on it.
Stacey Simms 16:02
Well, I'm curious too, because now we know and I've heard that too. it skips generations. We know it absolutely does not. But I'm curious Jeanne, you know, when you decided that you wanted to have children? Did anybody try to talk you out of it? This was a very different time for diabetes.
Jeanne Martin 16:14
Well, I was told that I would have a hard time having a child. And so we put up for adoption. And we were waiting to hear and I went to the doctor and thought I had a tumor but the tumor was Jessica. So I thought, okay, so we said, you know, we were going to have a baby so we don't need to adopt and they said, Well, why don't you wait to see if everything is okay. And I said, okay, because the doctors told me that Jessica only had a 40% chance of being born alive. So we waited and she was screaming and kickin, so she was Fine. So we stopped the adoption because we didn't need two babies at one time. And I didn't see her for I think it was like two or three days. She was in an incubator because her blood sugar was low when she was born, but then after that, she was fine. And I was fine. And that's it.
Stacey Simms 17:19
I'm sorry. I'm still on the tumor.
Jessica Graham 17:24
Well, and I'll add to that, because, you know, she won't tell you this part, but because she was diabetic, she couldn't have any medicine or or painkillers. When I was born, and you were in labor, what, 24 hours? No, no,
Jeanne Martin 17:39
it was, I don't remember 13 hours. So it was a
Jessica Graham 17:42
ridiculously long and I was stuck behind a piece of cartilage. And so I wasn't coming out. So she went through hell delivering me. But it all worked out. Yeah.
Stacey Simms 17:54
Oh, worked out. things really have changed. I mean,
Jeanne Martin 17:58
Oh, yes. And I also was I would not live to see my child grow up. Now I've got a 13 year old grandson.
Stacey Simms 18:07
But let's talk about that, because I've heard that from so many people diagnosed not only in the 50s, but even as late as like the 70s and 80s. This Doomsday of you're not going to live past 30. And I know that for many people, that unfortunately was the case, there was not the care. There was not, you know, whatever they needed, but it seemed as though in some ways, the doctors, I don't know, I don't want to editorialize here, but they seem to have this Doomsday approach. And when you were told that Jeanne, what was your reaction? I mean, I think a lot of people would have said, well, what's the point? Oh,
Jeanne Martin 18:37
I'm kind of stubborn.
And my reaction was, I told my husband, that guy can go walk out in the street and get hit by a bus tomorrow, and I just, I'm not going to go along with that. That's was my reaction. I got mad and he did die. A younger The age that I am now is a matter of fact, the guy that told me that I didn't buy into it. I didn't get depressed because I just thought it was full of baloney. I love it.
Stacey Simms 19:10
All right, this is getting interesting now. I do love it. Jessica. I know your mom is sitting right there. But you're doing great Jeanne, obviously with with your shots and with your checking, but the technology has advanced. I'm going to assume, Jessica, that you guys have had a lot of discussions about this. And your mom has said no. And you're respecting that don't put words in your mouth. But I'm curious how have those conversations happened?
Jessica Graham 19:36
Oh, yes. And I don't mind saying it with her sitting right here. So I don't mind that she doesn't do the pump because I understand. I mean, she's had incredible control for 60 some years and so i don't i don't blame her that but I want her to have a blood sugar monitor because she tends to go away Low, and she goes low at night. And it's been a problem as I call it a problem. Whenever she goes low it to me it's a problem. And so while she keeps great control, and I mean, it's her life, right, and it's her decision to make, I wish that she would get some of that electronic help with the monitoring of it. So yeah, we have that conversation a lot. But I lose.
Stacey Simms 20:26
That's a difficult situation. You know, we, as parents of children with type one have these conversations, especially once there were certain age, and I'm going to say, as young as four or five years old, where it really has to be up to the person to buy into it and say, Yes, I want this technology. And I would imagine and I'm just imagining having this conversation with my mother, who I think you have a lot in common with with Jeanne. And I think it would go that well. Yeah, well stubborn, but also you're doing very well.
Jessica Graham 20:52
Yeah, and Exactly. That's why I mean at the end of the day, what am I going to do right now I can only put in my two cents but that that is is the one thing that I wish you would do. And my dad to his credit. I mean, he's kind of grown up with this too, right? And so he's a great monitor strangely, he knows when it's the middle of the night and she's having a hard time. But I don't like to rely on that.
Unknown Speaker 21:17
But again, I lose
Jeanne Martin 21:19
stubborn. Well, let me cut in here. But the doctor prescribed a new kind of insulin that I've been taking. I don't know six months now and I have not had any trouble at night. Oh, good.
Stacey Simms 21:32
We don't have to use it in the show. Are you taking Tresiba?
Jeanne Martin 21:34
It's Tresiba. Yeah. And I have not had any trouble at night. Since I've been on that. Yeah, that's a good thing.
Stacey Simms 21:41
But my son uses an insulin pump. But long story short, we had him on Tresiba with the pump for a while because teenagers use the most ungodly amount of insulin that you could imagine. He's coming out of it. So we did away with the trusty bow, but boy, it's like the best long acting we've ever used. I'm curious too, and the bridge kind of skipping around chronologically. Hear but I mentioned earlier that there were not blood sugar meters for home use when you were diagnosed. Do you remember when you started using one of those maybe the 80s
Jeanne Martin 22:09
Well, I thought it was great because then I really knew what was going on. I mean it just it was very helpful because and that's why I checked myself a lot because you can't guess how much it's I mean, you can guess kind of how much insulin but you really can't without knowing what your blood sugar is to my mind. I mean, I think that's what's helped me keep control in Yeah, I don't like to stick my fingers but I mean, I'm so used to it now just comes second hand to me, so it made a big difference. What really made a big difference to is having plastic syringes that don't have to boil. Tell me
Stacey Simms 22:49
more about that. When did that switch? Not Not Not necessarily like what year but tell me more about that. What do you remember kind of the transition? Did you just one day throw all the glass ones out? What happened? Right
Jeanne Martin 23:00
Yeah, I did. I guess the doctor told me that these were available. And so I bought them and and use them. And then you know, he used it, throw it out. And it just, it made a big difference. It's just like, oh, gosh, you know, this is getting easier. Well, and you know, it was a lot easier. I mean, it sounds like a small thing, but it was a no to boil, you know, syringes once a week and needles once a week. And so this was great.
Jessica Graham 23:28
When did you I don't remember you ever boiling? Was that in the 60s or
Jeanne Martin 23:32
70s? No. Well, I must know. I don't think when you were born. Other times, I must have used the plastic ones. Yeah. Because I don't remember doing that either. When you were born.
Stacey Simms 23:43
You know, Jeanne, it's interesting. You said it seems like a little thing. I think for someone who has my perspective. My son was diagnosed in 2006. When we basically have I think we have all of the technology. At least it was on the drawing board if not available at the time. It wasn't as good as it is now. Just 1314 years later, but it was there. And so to think about transitioning from peeing on a stick to a blood sugar, meter glass syringes, to plastic syringes, these are monumental changes. I don't think it was a little thing. I can't imagine how much of a difference that made. I mean, the needles had to even feel different. They were more comfortable, I assume.
Jeanne Martin 24:20
Oh, well, it was it was like one size needle with the glass syringes, and they weren't that small. And now, you know, you can get all different kinds of sizes. Jessica, do you remember growing up?
Stacey Simms 24:32
It sounds like your mom's diabetes was not front and center, as I'm sure she would not have wanted it. But are there any things that stand out? You know, when you were a teenager? I'm trying to think his parents are just super embarrassing to begin with?
Jessica Graham 24:44
Honestly, no, because it just my mom wouldn't let it be the center. I mean, you're absolutely right about that. She she would never have wanted that. And I don't remember there being anything that happened when I was a teenager. That was odd. She She had one episode. I guess I was a teenager when you broke your ankle. She was we discovered that she couldn't drink champagne. She had a glass of champagne. I mean, literally a glass and the next morning passed out and broke her ankle because it messed up her blood sugar so badly that I don't remember anything ever. Embarrassing or weird or no, not not at all again, I I remember when I was a younger teenager, like if you started acting strangely, I needed to get you orange juice like I vaguely remember that but and that went for anybody. Like I think if anybody started acting strangely, I would have ended them. Shoes. But
Stacey Simms 25:43
Jeanne Martin 25:49
You know, I work during high school, I worked at clothing stores and I worked at a bakery. And then after school, I worked at a real The state office. And I guess that was it because it was the board of realtors, because I had to quit them when I got pregnant with Jessica. So that was it. And then when my husband started his company, I worked for him. I did the payroll and things like that.
Stacey Simms 26:19
Jessica, what led you to JDRF? I mean, we had met Previous to that, but we connected again at the Charlotte chapter.
Jessica Graham 26:25
I led community outreach for Harris Teeter, but didn't formally get involved. They were supportive of JDRF, but didn't formally get involved in a board capacity until I got to Time Warner Cable, and they were also involved with JDRF. And so I joined the board at that point, and was on the board for, I don't know, six or seven years, I think, and shared it in there. But I think I knew about JDRF through mom, like I think you just always supported them. Yeah, um, if I'm not mistaken, the world. organization was born the year I was born. Just another thing that has always been a part of my life. And I was really excited to get involved with the chapter because yeah, as you sort of already mentioned, the parents of type one diabetics are really involved. But there really aren't many children of type ones out there. There weren't at the time. It meant a lot to me to be involved and to be part of it.
Stacey Simms 27:24
I'm just curious, your mom, Jeanne, you just seem so laid back. And I've talked to several people who have lived with diabetes for this long who are I want to say relax, because obviously you're not, but who are more of the, hey, I'm taking care of it. We don't need to talk about it. You know, I'm not surrounded by people with type one. And then there are people who are younger, or we've been diagnosed more recently, who are really a big, big, big part of that community and want and need to kind of breathe that air. And I was curious, Jessica, was it surprising for you to kind of be involved in JDRF and be around people who were more like well, I am talking about every day and I am going to tell you more about it.
Jessica Graham 27:58
Yeah, I mean, it was it was definitely Different, because that's just not how it was in my house. I mean, it wasn't a big secret or anything. But Mom definitely didn't advertise it. And it certainly wasn't part of her identity. It was very, very different. And I really loved to one be involved that I really loved getting my mom in that community, like I would take her to the gala and that kind of thing. And she really is such an inspiration to a lot of people, especially those who are newly diagnosed because they can see somebody who really, I mean, has had a full, long, wonderful life with it. And so it's not this Doomsday message. And so she's really, I think, a real inspiration for that. And I think too, she's a great inspiration for how important attitude is an outlook is because she's never let it define her and she's never really Let it limit her. And I think she's really inspirational. So yes, it was very different to be around different people with it. But also it was really exciting to just to be able to share her with that community.
Stacey Simms 29:12
Jeanne, what's your reaction to have your daughter sitting next to you and saying, what an inspiration she thinks you are?
Jeanne Martin 29:17
Well, I think that's very nice. It's very complimentary. I never thought of myself that way. But I'm glad she sees me that way.
Stacey Simms 29:26
I know my listeners are going to want to know, a few more little details. Jeanne, do you exercise a lot? Have you always been active? Are you more kind of laid back about that too? You know, that's one of the things that people always ask me about.
Jeanne Martin 29:37
No, I say I'm pretty active. Well, since we've lived here almost the whole time. I would go to the why three days a week. I don't do that now because I suppose and when I was younger, I played golf, and did a little bit of tennis. I've always gardened Well, not always but for a long time I went out in the They are dug in the dirt and that type of thing. And I try to walk about a mile a day. I mean, I walk more, but I go for a mile walk, or more. I tried to do it every day, unless it rains. I do it early when it's hot, because the heat affects my blood sugar. I run into trouble easier. And I don't know if that's the same with other people. But anyway, that's what it is. Yeah, I think I'm pretty active.
Stacey Simms 30:27
Yeah, you're very active. Jessica, I'm curious, have you. You mentioned that you were worried about your son having type one and he's 13. Now, do you still think about that? It's in the back of your mind. Is it something that you've ever had checked out? Anything like that?
Jessica Graham 30:41
Um, yes. So I worry about it every day. But I don't
I try not to think about it. And I certainly have never mentioned it and
Unknown Speaker 30:49
Jessica Graham 30:50
it chat once and I forget why you've charged it. Yeah, maybe. Maybe you were the one anyway. I feel like I had it checked once and I don't remember why maybe he was thirsty that day. But I do worry about it a lot. And I mean, literally every time he says I'm thirsty, because I'm just a little neurotic that way, but I don't talk about it at all. Like he would have no
Unknown Speaker 31:14
idea. I don't
Jessica Graham 31:16
think anybody would know that. But yeah, I worry about it a lot. But then again, I think, well, if he ever were to develop it, oh, my gosh, he has the world's greatest teacher to help him navigate it. So that puts my mind at ease. When he was very, very small. I found a test that he could have done. It might have even been when he was born. I mean, it was he was really, really young. And I think it was down in Florida, talking about TrialNet Yes, that must be what it was. And we just decided
Stacey Simms 31:49
not to do that. And I think I talked to you about it and talked to my mom about it. And she, I think suggested that we not do it and I decided not to so Well, Jeanne, let me then ask you about that because you would, as Jessica said, you know, he would have such a great role model and teacher, God forbid something would happen like that. So let me just ask you, what would your advice be for a newly diagnosed adult or a newly diagnosed family facing something like this now in in 20?
Jeanne Martin 32:19
Well, it depends the age of the kid. I think when you're a teenager, I think it is be harder on the kid because, you know, you don't want to be and maybe it's because I'm a girl and maybe it's back then you don't want to be different. I mean, you know, you want to blend in as a teenager, you don't really have enough self confidence to just say, Okay, I've got this and I'm gonna deal with it. I mean, I'm not saying that kids don't but I would think that's a harder age. But I guess I would just be very positive and all the things that can help. At the same time, it was would be your his responsibility to see He does try to do what he should do with diet and exercise and taking this medicine. I have a niece who came down with it when she was 10. And she never did well with it. She didn't do what she was supposed to do. And over the years, she's had all kinds of complications. And she just got very depressed with it. And you have to be positive. But you the kid himself, has to take responsibility for himself to do what he should do. And I strongly believe in that.
Stacey Simms 33:36
Thank you both so much for joining me today. It was amazing to learn about your story, Jeanne, and I'm so glad, Jessica that we were able to do this. Thank you for being on the podcast.
Jeanne Martin 33:45
Thank you for having us. Yes, thank you. It was nice meeting you via the computer.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 34:01
I shared some photos in the Facebook group that Jeanne and Jessica sent me, I was so happy to finally get a chance to talk to her. And you know what, after that interview, she sent me an email with some advice for Benny, which I thought was really, really nice. Now he is, as you've heard him here on the show, he maybe he's a little too confident, but he's very independent and very confident. But Jeanne has some really nice words just about you know, not letting diabetes stop you and keeping a good attitude that has served her well. And I really appreciate that she took the time to do that this community is just great.
All right, innovations is up next. And we have a very low tech solution to a very scary problem. It has to do with rubber bands. All right. I'll explain that in just a moment. Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. So trust me when I say using share and follow apps make a big difference. I made a lot of people who don't realize that when Dexcom launched you could not see numbers not only on your phone, but you could not share than with anybody else. But now it's such a great system. And Benny and I set parameters about when I'm going to text him or you know how long to wait all that it helps us talk and worry about diabetes less when he is at asleep over or goes on a trip. It gives me peace of mind. It also helps if I need to troubleshoot with him, because I can see what's happening over the last 24 hours and not just one moment. The alerts and alarms that we set help us from keeping the highs from getting too high and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
As you know I am the queen of diabetes mistakes I wrote a whole book about why I think mistakes are great. It's the world's worst diabetes mom real life stories of raising a child with type one. But I will say that making mistakes is also incredibly scary at times. And the one mistake that I think almost everybody with time wonder who's a caregiver for someone with type one has made is mixing up the long acting and the short acting when you're on MDI, whether it's the beginning or you've been doing this for a while, I've been enough Facebook groups where I see this happening. It's once in a blue moon for the individual. But it seems like almost every week somebody is coming in and saying, Oh, my gosh, I did this. I'm so scared. What do I do? Right? Well, one of the best tips I ever heard on is so simple. And I heard it from a CDE.
And I'm so embarrassed that I don't know their name. And I'm so sorry, if this was you, email me Stacey at Diabetes connections.com. And I will give you credit, but what you do is this, whenever you have a new vial or a new pen, have long acting and do this on the long acting only take a rubber band and wrap it around the pen or the vial. Just wrap it around a couple times. You know, make sure it's not loose, it's not sliding around. And then every time you pick up your long acting, you will know that it feels different. It's got those rubber band bumps on it and If you do this often enough, really doesn't take that long, maybe two weeks, your fingers will start to associate that feel with the long acting. So if you make a mistake if you accidentally grab the wrong pen, your hand and your brain will instinctively know that something is wrong. Now, this is not proven. I haven't seen any studies on it. But this is advice that was given to me that I've heard other people use. And it really does make sense.
It is incredible that after all this time was different kinds of insulin, that the pens are pretty much exactly the same. The Lantus vial, I remember might be a little skinnier, right? It looks a little bit different. But when you're moving quickly and automated, like a lot of us are, I mean, I could do that Tandem cartridge in my sleep, whereas when we first got it, I thought, oh my god, this is so complicated. I've got to lay everything out on the table. We did the Animas pump for 10 years, I could definitely feel that thing blindfolded. You just get used to your routine and how things are Feel so if you just wrap the rubber band around the long acting, you will get used to the feel of it.
Let me know what you think. Does that make sense to you? Has anybody tried that? And if you've got an innovation like that This segment is for everything big and small. That makes living with type one just a little bit easier. Let me know I would love to hear from you.
Just a little personal update before I let you go, this has to do with insurance. We've had some employment situation changes around my house, which means I have already spent far too much time on the phone. I decided to start taking advice from one of our previous guests from Melissa Lee, who said when you have insurance issues, you should start with the diabetes companies and work backward. So I called Dexcom and Tandem and I said hello, I have changed insurance. What do I need to do? And they were very helpful. The bad news is my new insurance means we have to order from a third party supplier and it's Edgepark. Edgepark. If you're listening, please, please handle this.
Well, we were with Edgepark years ago and I hate to disparage anybody. But let's just say let's turn this into a positive. I felt that it was such a gift for the last five and a half years to order directly from Tandem and directly from Dexcom. I am sad to see those days in my rear view mirror. So I will keep you posted on how it goes. I'm currently as I'm recording in the limbo of an Edgepark representative, we'll get back to you. We have plenty of supplies. I have a great support system if I need anything, so I'm not worried about Benny. But man, although I'm a liar, because I did say to him, you know, before you rip anything off your body, so bad before you take off that sensor or that inset, come talk to me, and make sure that it's okay to do so. Isn't that terrible? I mean, I'm laughing because we really are fine. But it just makes me crazy how expensive this stuff is, and how difficult the process is to order what you need. So I will keep you posted on that. Hopefully, it'll all go smoothly. But this is not my first rodeo. So I'm anticipating navigating a not so smooth road. I'll let you know.
Thank you so much to my editor, John Bukenas from audio editing solutions. Thank you all so much as you listen, I'm Stacey Simms. I'll see you back here. Next Until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All Wrongs avenged
It's our annual game show episode! This year, because of all the Zoom calls, we decided to play the HollyWood Squares! Of course, since this is a show for the Friends for Life Conference (FFL, pronounced Fiffle) we're calling it The FFL-Wood Squares!
Huge thanks to our panelists:
Kerri Sparling, Edward Hawthorne, Dr. Henry Rodriguez, Chris "The Grumpy Pumper," Moira McCarthy, Renza Scibilia, Oren Liebermann & Cherise Shockley. Learn more about them in the FFL Conference Program
Get the App and listen to Diabetes Connections wherever you go!
Transcription In The Works
Meet two people with diabetes making a difference in very different ways. We're talking to dietitian and strength coach Ben Tzeell & teen author Morgan Panzirer. First, if you've sort of fallen off the nutrition and exercise wagon in the last few months, you’re not alone. But getting back in the game doesn’t mean going to extremes. Ben has advice about starting small and making changes that stick. Morgan was diagnosed with T1D at age 6. She's now 19 and just wrote a book about her life – so far – with diabetes. It's called Actually I Can.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This week, I talked to two people with type one making a difference in very different ways. First, if you've sort of fallen off the nutrition exercise wagon in the last few months, you're not alone. But getting back in the game doesn't mean going to extremes.
Ben Tzeel 0:37
Life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy, and now you're feeling deprived when you see all your friends eating these other things.
Stacey Simms 0:47
That's dietician and strength coach Ben Tzeel. He's got more advice about starting small and making changes that stick in Tell me something good. I'm talking to Morgan Panzirer diagnosed at age six. She's now 19 and just wrote a book about her life so far with diabetes.
Morgan Panzirer 1:05
And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine as long as I don't need a shot.
Stacey Simms 1:15
The book is called, actually I can, and after talking to Morgan, I can tell you better believe she can.
Welcome to another week of Diabetes Connections. I am so glad to have you along. Welcome if you're brand new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned two. He is now 15 and a half. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast.
I have been so busy the last week mostly because for whatever reason, sometimes podcast interviews seem to come in clumps. So I had a lot of interviews to do and a lot of production I take care of a lot of it before I send it over to my editor who I've mentioned before, but also I've been busy with my Friends for Life presentation, Friends for Life is the biggest family conference all about diabetes in the US, possibly the world. And instead of having an in person conference this year, like everybody else, they're having a virtual conference. And so I decided, and boy, I thought this was a good idea that I would do my usual game show I usually do a game show presentation as one of my talks for them. But I would do Hollywood Squares because boy zoom just lends itself to Hollywood Squares, doesn't it? That's what I at least what I think of and I gotta tell you, I'm thrilled with how it came out. But I also got to tell you, I'm not sure I'll ever do it again.
We had to get eight people I was the ninth you need like a tic tac toe board right for for the Hollywood Squares. The FFL-Wood squares excuse me, that's Friends for Life, FFL. So FFL-Wood squares and I decided to go big and I got people from all over the world, different time zones. Day here night here. Early morning here, it was amazing. So huge credit to my cast of characters. Thank you to the contestants. I cannot wait to share it with you. The conference itself is mid month. If you've signed up for that you'll see it then. And then we'll drop it as a video in a podcast episode. Shortly after that. That's one of the really fun things that I get to do, right. I mean, you have an idea you get to try it. You see if it's a disaster, you see if it's fun, but you know, it's it's never boring, that's for sure.
Okay, interviews coming up in just a moment with Ben Tzeel and Morgan Panzirer, but first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door every One Drop plan. Also in access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.
Unusual show this week and that I have two guests two separate interviews. And if you're here only for one or the other, that is fine. I can tell you that Morgan's interview starts about 22 minutes from now, so you won't hurt my feelings if you skip ahead. But I really think you'll like my first guest, Ben Tzeel. we first talked to him last year. He's a dietician, he's a strength coach. And Ben says eating and living with diabetes should not be boring or feel like punishment. We had a fun conversation about what that really means good intentions about eating well, and exercising and quarantine and more. Here's my talk with Ben Tzeel.
Hey, Ben, it's good to talk to you again. Thanks for coming on.
Ben Tzeel 4:53
I'm just so thankful to be here. And it's so awesome. It's just amazing. Thank you.
Stacey Simms 4:58
You're really well. We'll see about But
Ben Tzeel 5:02
it's human. It's human interaction right now we don't have much of that these days do it.
Stacey Simms 5:06
Well, let's start talking about that. I mean, how have you been living since the stay at home orders? What's your life been like?
Ben Tzeel 5:13
I just don't go anywhere. I've been living in Florida, not nothing against Florida, but I feel like the cases go down and then the cases go up. And that's just what you hear about everywhere. And I just figure it's just not something I'd rather really want to deal with if that makes any sense. Do you live alone? I actually live with my girlfriend and fortunately for me, she's willing to do a lot of the grocery shopping and a lot of the day to day stuff at the pharmacy but honestly, we just don't go anywhere because she works in the ICU as a pharmacist and she sees all this stuff firsthand. Wow.
Stacey Simms 5:44
That's gonna be interesting job to have right now.
Unknown Speaker 5:47
Stacey Simms 5:49
Assuming that you've been doing this since mid March, yo, how's your health? How are you keeping up because you're pretty intense person when it comes to fitness?
Ben Tzeel 5:58
Yeah, I definitely like to thanks. So it's something where I've had to get creative. I've had to step outside of my comfort zone and really look at what I have and say, Okay, what can I do with what I currently have? And slowly, you can assemble a little mini gym at home and things like that. But I've really, really taken time and effort to focus on what can I do instead of, well, this is out of my control, I guess my fitness is gonna go away. I guess all of my other habits that I've worked so hard to develop are gonna just fall by the wayside?
Stacey Simms 6:26
Well, I think for some of us, those things, the second part, those things have happened, right? Because it is hard to maintain a routine It is hard to, you know, especially when, and I'm gonna get personal here for people like me, you know, you're a strength and conditioning coach, you know, this is what you do. I'm a suburban mom who walks her dog and goes to the gym a couple of days a week. And it's been really easy for me to fall out of those good habits over the last couple of months. You know, do you have any advice? If people are listening and thinking, Well, I haven't kept up so it's too late now.
Ben Tzeel 6:56
Well, it's first one of those things is to your point where you mentioned It's too late. Now, it's never too late to actually start and say, I'm gonna look back and say, This is what I did before, this is what I was doing. And maybe I won't be at that same point right now, because I have let myself fall off because I have fallen out of this routine. But what is something I can do today that small to just build a little bit of momentum. And as you build that you take another baby step, another baby step, and suddenly, you're taking strides to get back to where you were. So if you start from that mindset, and that point, just make that tiny little shift, you end up in a situation where suddenly three, four weeks from now, you're thinking, wow, I'm already almost back to where I was. Because your muscle does have a memory, it is going to remember where you were. And as long as you put in those same habits you previously had, you should be totally fine.
Stacey Simms 7:45
It's funny when you talk about, you know, getting back into routine because I think at the beginning of this, I don't know if this happened to you, me and my daughter, and I think a lot of people and my daughter came home from college, and we said All right, we're going to do yoga on YouTube. We're going to walk the dog like five miles every day, and we're gonna get really, you know, in great shape, we have a stationary bike, and we're going to do all these bikes and all these rides and, and we really haven't done much of it at all after those first couple of weeks, and I've seen some really funny parody videos on that and a lot of people who have felt this way, but I want to flip that around and say you have taken as you said, You've gotten creative in your house, can you tell us a little bit of some of the things you've done to make your your home gym, I'm assuming that you didn't run out and buy a whole bunch of, you know, gym radio equipment?
Ben Tzeel 8:29
No, I was fortunate that I my parents don't live too far away. And I had a bunch of dumbbells and a bunch of things from my youth that I was able to pick up. But beyond that, I mean, I was pretty much in the same situation that everybody else was where I had a few resistance bands and a few dumbbells and a few little things and had to start realizing. All right, well, I want to keep my insulin sensitivity good. I want to stay on this track of that I've been working so hard to be on what can I do. And so maybe that requires you sitting down and saying Alright, I'm going to restructure my workouts, I'm going to tell myself maybe I was doing four days a week before an upper body and lower body, you can still do that. But you may have to adapt. Instead of using a cable, you may have to use a band instead of using like a barbell or instead of using a heavier weight, you might have to go more reps at a lighter weight, or incorporate pauses or incorporate other bodyweight movements that can be just as challenging. And honestly, the first few weeks of the quarantine, stay at home, whatever you want to call it. I actually felt like I was more sore than when I was in the gym because I had to push harder.
Stacey Simms 9:34
You've mentioned your blood sugar several times you've lived with type one you were diagnosed when you were a kid. I've heard two schools of thought here over the last couple of months. One is you know, my blood sugar's are all over the place. I'm stressed out I'm so worried and you know, things are crazy. And then the other side of the coin is my blood sugar's have never been steadier. You know, I'm not going anywhere. I'm not eating restaurant food, where do you fall in on that?
Ben Tzeel 9:56
I would probably fall. That's it. I mean, I'll Honestly, it's a good question because I see it a lot from the first perspective. So I feel like I then kind of translate that to me. But it's actually my numbers have been in better control since this all began. Because there haven't been as many extraneous factors. I'm not going places. There's lots of unknown variables introduced. But I just I feel for a lot of the people that are in the first situation because there is that lack of routine and that lack of structure. And while everybody says, Oh, I, I wish I could be home more, I wish I didn't go to my job. Taking that structure out of the picture can really make it difficult to stick to that exercise program really stick to the food and the nutrition that's been making you feel good with good blood sugars, and you ultimately fall off that path. And when you do your blood sugar's kind of take over everything else. And during a time where there are no sports, there's not lots of distractions, there's no big gatherings, there's no concerts, your blood sugar's can literally become the one thing that you hone in on and focus on way too hard.
Stacey Simms 10:55
That's funny because I thought you were gonna say there at the end that you can really you can focus on And really make a great difference. But you said you focus on and you know, it can it can not be a great thing. Can you expand on that last thought?
Ben Tzeel 11:08
Sure. And I mean, of course, I can tell you it, there's ways to get around it. But a lot of people what will happen is, I mean, think about it like because there aren't tons of social things to be doing. And there's not tons of activities and tons of distractions, you start to look at the few distractions you have in your life. And one of them would be, I wouldn't call diabetes, a distraction, but it's one of the big prominent parts of your life if you have it. And it just starts to become a bigger and bigger and bigger thing that you just the more you focus on it, the more it expands and the bigger role it can take in your life. So I've watched a lot of people people I've worked with people I've interacted with on social media, that they end up in a situation where their blood sugar's just take over their entire existence where they're looking at their decks calm every five minutes, wondering what's going to happen and sometimes that leads to great results, but other times, it just drives people crazy. He drives up their stress level and they get into this loop of frustration. Oh, my blood sugar's high. Oh, I'm a failure and they go down the spiral that is very counterproductive in terms of living like a really as free of a life as possible to do right now.
Stacey Simms 12:14
Yeah, I would also echo that for parents as you were listening. I think it's super easy. And I found myself doing this too, with Benny home a lot more. It's easy to focus on our kids blood sugar's more, right? They're not going anywhere. They're not go to the movies, they're not hanging out with friends. And it's easier to make that a bigger focus than it needs to be. So I'm kind of listening to this and taking it to heart. But you know, one of the things you're really known for in social media is these these crazy foods, right? We talked about this last time when you were on, you know, giant donut, big meals and stuff. And I'm curious if there's, you know, we often figure especially newly diagnosed, we often find out that we love restaurant food because it's full of hidden fats and sugars and you know, salt and butter and all those delicious things that We love and that's what makes restaurant food so good. But it's kind of hard to bolus for that stuff. Are you finding it easier? I mean anything on that in terms of home cooking, which I'm so sick of Ben, I am so tired of cooking. And my husband helps if he cooks too, so I'm just sick of it.
Ben Tzeel 13:13
Well, I can't blame you for being sick of home cooking because it gets to a point where I'm probably three months or so from having had something from the outside. And it's I'm just craving something
Stacey Simms 13:26
brought in a meal. You haven't brought anything in.
Ben Tzeel 13:28
I just maybe I'm paranoid, but I just I just would rather be like, you know what, at least I know, I'm dealing with the prep and I'm dealing with everything else. And when this starts to settle down, then I'll start to venture out and have all of the fun food again. Not that I haven't had fun. Trust me. You can make many fun things at your house. I know what you're making.
Stacey Simms 13:45
Yeah, no, I have friends who haven't brought any food in. I mean, we're not in that camp, obviously. But I know a few people who've done that
Ben Tzeel 13:51
Emilio wants me to really bad so we're working on it. We're in a negotiation right now. But to your point, I would say when you know All of the factors within what you're eating. So of course, you know that you've prepped it, you know, what you've put into it, you know, everything and everything. And there's no variables, there's no question marks. And we're not talking about the COVID part, but just about the actual composition of the food itself, then it's a lot easier to bolus for because you have all the answers. You have all the math right there when someone else creates something, even if it's something that, you know, Oh, I know, this is a bacon double cheeseburger, and I know I've had them before. And this is what happens. There's some sort of variability because that part of it is out of your control. And that lack of control can be difficult to account for granted. There's ways to take it in to consideration and be able to say, all right, this is what I'm going to do based on experience based on other knowledge, like put numbers and experience together and make a very educated decision and dose and do amazing with it. But just that little factor of there's other stuff in here there is that hidden fat you were describing. There's sometimes things are cooked in, in oils we don't know about there's sugar that might got thrown in there that you don't know. And then you end up eating some foods like that and you get frustrated you you have chicken alfredo and your blood sugar goes up to 320 for the next seven hours, no matter what you do no matter what you dose and you're just full of frustration the whole time.
Stacey Simms 15:14
So you work with a lot of people with type one and your background is nutrition. You have a master's degree, you're registered dietitian. I'm curious what the first change you urge people to make when they come to I know not everybody's the same. But you know, one of the questions maybe that you ask,
Ben Tzeel 15:30
I guess, coming from me, the first things I want to know is where people are starting out right now. Like, what are you eating? and kind of just getting you aware of what are you eating because as evidenced during this time, and this time, please put a magnifying glass on it more than anything else. But people kind of just go through the motions. They don't pay as much attention to, oh, I'm eating X, Y and Z. They just say oh, I'm gonna make whatever I can grab and I'm just gonna go for it and eat and then continue and a lot of people can't tell you what they ate for lunch yesterday. So my first goal is get them really aware, what are you eating? Start to kind of get a sense of it and then get them understanding. Are you making the meals complete? Are you getting your proteins, your fiber, your veggies? Are you getting them to the point where you're getting the nutrients that you need for both the body composition that you want, but also for the blood sugar control, because once you have the blood sugars and control, the body comes a lot faster, whether you want to lose weight or get strong. And once the blood sugars are controlled, you can do all the things in life that you really want to be doing.
Stacey Simms 16:30
I'm always worried about talking about diets, right? Because people want to lose weight, they go on a diet, people try all sorts of different things. We've talked about this in the past to me low carb, high carb, whatever it is, what do you find works overall, in general, for the people that you work with.
Ben Tzeel 16:45
For the people that I work with. I've had people on 400 grams of carbs, I've had people on 40 grams of carbs. The most important factors that I've noticed are getting enough protein into your life and I know a lot of people are concerned Oh protein is going to Your kidneys. But all the research, if you dig into it has shown that a higher protein diet is actually advantageous to the kidneys. I'm not saying you need to eat like five chickens a day, but at the same time, a substantial amount of protein. I would also say making sure you do get the fiber. That's why I tried to hit on those big three the protein, the fiber than the veggies, the fiber is going to be important whether you get that from veggies and fruit or whether you do get that from some grains. Some people do well on a decent amount of carbs. Again, it's that carb side of it is preference and everyone in diabetes is so fixated on it, when I can't stress enough where people that I've worked with are super successful on all levels of carbs, but having the protein, having the fiber, having enough of the veggies, those three things and then the other thing would be the 9010 rule. And that would be something where I would I don't know if it's actually a rule I may have made it up but it's 90% of the time you're eating on point you know what you're doing, you're making quality choices and that other 10% of the time you're enjoying the sunset You're enjoying the desserts, you're enjoying the finer things that life has to offer. Because life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy. And now you're feeling deprived when you see all your friends eating these other things. And as long as you have a strategy on how to dose for it, so your blood sugar is going to be ultimately good. There's no reason to deprive yourself of having that and so many people are living limited in that scope of I can't have that because I have diabetes, that food scares me. This is awful. Like, I wish I could have that and you can have that. But allowing yourself that wiggle room of 10% that is usually enough to say hey, I'm gonna get the results I'm putting into a effort 90% of the time to get the blood sugar's get the body but then the other time I can enjoy everything.
Unknown Speaker 18:50
What's your big favorite 10% fool?
Ben Tzeel 18:53
That's Oh, that's a loaded question. I was gonna say there's a restaurant here called dance and dance. And Tampa has these loaded nachos that are so good. They're like a once every six month kind of thing, but they've got like the cheese and the pulled pork, and they've got the beans and they've got the ground beef and honestly, it's actually not a terrible meal in general but there's just so it's so calorie dense. That would be one cookie dough for sure would be one. The edible cookie dough not like cookie dough. That's raw eggs. And then Honestly, I have to say this but have you had cookie butter before? I have not had cookie pokey buttered so I love cookie. What is it cookie butter? It's I don't even know how to describe it. There's like this. I know the first time I had it was from Trader Joe's and then they have some everywhere apparently I didn't know it was a big thing. But it's literally like the butter form of cookie. It's like imagine peanut butter consistency but it tastes like a cookie and it's basically straight fat and straight sugar. But it's so good. Oh my God. That is my guilty pleasure. I will not lie. That's It's so good. That Great,
Stacey Simms 20:00
okay, he's got some advice. We've You know, we've gotten some insight into how you operate. I know you have a new program that you're working on, tell us what this is all about. How can people take part?
Ben Tzeel 20:11
Absolutely. So I have a program called blood sugar boss, because everybody wants to be a blood sugar boss, you want to be in control of your blood sugars and in control of your life, getting the body that you want, and literally living life without any kind of limits. And so the premise is, you're going through and restaurants become no big deal. You can walk into a restaurant by the end of this and point out what you want on the menu and say I want that and know how you're gonna dose for what your game plan is going to be. No questions asked, like the on the exercise side of things with respect to blood sugars going low constantly, that part's eliminated. You know, you go and exercise no matter what you're doing. We're eliminating the lows. we're eliminating the highest you can truly do what you want to do without having any concerns and actually focus on The exercise instead of Oh my god, what is my blood sugar going to do? Then of course talking about the food side of things to make sure that you know what choices need to go into that 90% what choices need to go to that 10% and when you do go in that 10% How to dose so you're not concerned? Oh, man, I'm going to be 300 for the next six hours. I know exactly what to do for that. I mean, we're going into travel when travels the thing again, you know, we're making sure that you go on a trip, you're like, Okay, instead of vacation being stressful, this is no big deal. We're hitting everything on all different kinds of angles. And by the end of it, you can walk away from it saying, I am in control, no situation will faze me and this is literally everything I need to know about diabetes, and I forgot one of the other big things were kick starting your metabolism up. So you're going to be able to be prepared to get stronger and lose weight. At the same time. I'm curious you you share a lot as I mentioned on inside on social media, and the other day, I saw you share a post where you were over 300 for a while, you know, you had I think it was at a Ben canula or something like that. Are you concerned that when you share something like that, right? Do you get feedback from people saying, how could you that's so dangerous? Or, you know, how could you let that happen? I'm curious what kind of feedback you get when you are that transparent, because, you know, we all know that's gonna happen, right? And I think if there's a lot of people out there that go on social media, and they act a certain type of way, and they say, Well, my blood sugar's are great all the time. And my numbers are always the decks combined, it's flat, and everything's awesome. And that's cool. You can share that. But that's just sharing the highlight reel of life. People are almost afraid to show the authentic side of the side of them that shows I'm human that I get that annulus to these things do happen. And so I feel like by showing that, it's like, Look, I'm not perfect, I've never been perfect, and there are people out there who I'm sure have had that situation happened to them. And if anything, I think it makes you more relatable. And it's okay to put yourself out and say, Hey, this does happen to everybody. Oh, my goodness, you can eat the same thing at the same time every single day and get a slightly different result. So, in that situation, it's part of life. Everybody goes through it.
Stacey Simms 23:15
Before I really let you go, I had to laugh when you said blood sugar boss. Because when Benny was was little, I mean, he was diagnosed before he was two. So we had to use all these, like really kid friendly ways of talking to him about diabetes. And I remember when he was about four or five years old, we started talking to him about like, being the boss of diabetes, you know, and little kids like to boss stuff around. Little kids have no control over anything, right? Everybody tells them what to do and where to sit and when to wake up, or when to go to bed and what to eat. So they have no choices, and sort of get to be the boss of something was really cool for him. And then the flip side of that was I had to say to him, Look, if you were if you're not the boss of diabetes, it's going to become the boss of you. And it really worked for a long time to help us teach him and but it's so funny. I forgot all about that. Until you mentioned The name of your program. So thanks for bringing that memory back up. It wasn't something that I had remembered. But it's so important because if you don't take control over it, you mean, you have no choice, it will take control of you.
Ben Tzeel 24:11
Absolutely. And that's, that's the whole goal here is like you said, you have to be the one that's saying, I am going to actively take control over this because otherwise your life is run by diabetes, whether you allow it because you allow it to you don't take back the power from it, and you don't say, this is my life, this is what I want to do. And if you don't actively make that decision, it's gonna make it for you. And you don't want someone else or something else. In this case, diabetes making that decision for you want to live life on your terms. So you need to make sure that you are a blood sugar boss.
Stacey Simms 24:43
I love it. Well, thank you so much for joining me. Thanks for sharing the program all the best with it.
Ben Tzeel 24:47
Oh, thank you so much. I'm just glad to be able to help more people in our community and I'm just thankful for the opportunity to chat with you as always, that's always an awesome time on here.
Unknown Speaker 25:01
You're listening to diabetes connections
Unknown Speaker 25:03
with Stacey Simms
Stacey Simms 25:06
more information about Ben's program blood sugar boss in the show notes and I'll link up his Instagram account as well now I'm gonna have to go back and look now because I do get a kick out of the bonkers food that he posts like these big portions and you know wild desserts and things once in a while, but I'm thinking now he said that they had been eating at home and creating their own stuff since the stay at home order. And now I really want to take a look and see what they've been making because we've been cooking a ton I think just like everybody, right? But I haven't been baking or making desserts. My daughter I have an 18 year old daughter and she likes to bake and she's been making cookies and brownies and stuff like that, but I'm not getting creative when it comes to desserts. I like to eat desserts, but I'm not making at this point. I am barely making dinner. I am so sick of Okay. All right. Well, you know good problems to have, I suppose.
The author of the book actually I can is our Tell me something good this week, but first Diabetes Connections is brought to you by Dexcom. And we've been using the Dexcom G6 since it came out two years ago now, and it's amazing. The G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup and the number just pops up. I know it sounds funny if you're newer to Dexcom but we've been using it for seven years now. And when you're used to calibrating you know, and not getting that number automatically, it really does. It just seems so different. The G6 has longer sensor we're now 10 days and the new sensor applicator is so easy to use, but he does it all himself. Of course we love the alerts and alarms and we can set them however we want. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.
Morgan Panzirer is our Tell me something good this week she was diagnosed With type one when she was six years old, that's obviously not the good part. She is now 19, a college student who would like to become a pediatric endocrinologist. Now her sister also lives with type one. Morgan started writing the book that we're going to talk about here in middle school. It's called actually I can, Morgan was great to talk to you. She was very patient with my questions and my ignorance about equestrian sports. Here's my interview with Morgan Panzirer. Morgan, thank you so much for spending a few minutes with me. I'm really excited to hear the stories behind the book. Thanks for coming on.
Unknown Speaker 27:32
Yeah, of course. I'm so happy to be here.
Unknown Speaker 27:34
What gave you the idea to write this book?
Unknown Speaker 27:37
I started writing it in seventh grade for two main reasons. The first was I was fed up with all the misconceptions that people with type 1 diabetes hear every day, for example, Oh, you got diabetes, because you ate too much sugar things along those lines. So I decided that maybe if I could tell my story, I would be able to kind of change the way the general public views this disease. The second reason I wrote it was because I really wanted to empower others living with Type One Diabetes and show them. That doesn't have to be something that holds you back. Rather, you can use it as an opportunity to do whatever you want to do. So
Unknown Speaker 28:14
you started writing in middle school, but you were diagnosed at age six, much younger than that. Do you remember your day? Your diagnosis story?
Morgan Panzirer 28:21
Yes, I'll never forget. It is so clear in my mind. I had been drinking and peeing a lot. So my mom knew the signs of Type One Diabetes because she was a nutritionist. Yeah, so my mom knew the sign. So she decided to ask my pediatrician to test me just to humor her. She was sure it was nothing but she said, just test it anyway. So she did and a couple days later, my pediatrician called us I'll never forget exactly where we were in the car. And she said to my mom, I'm so sorry to tell you this, but Morgan does have type one diabetes, and my mom just immediately started crying. We were all shocked. We went to the Naomi berry Diabetes Center at Columbia the following day. And from there, it was just, let's get through this.
Stacey Simms 29:07
So your mother was a little bit familiar with it, but in being a nutritionist, but I can't imagine you knew at all who you're in for, and especially at age six,
Morgan Panzirer 29:15
no, I had no idea. And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine. As long as I don't need a shot. Little did I know, every day of my life, I was gonna have multiple needles among the finger sticks and other things. So my parents didn't really know how to explain it to me, and it was definitely a rude awakening for the next few days to come. When you started writing, did you share it with anybody else? Was it just for you at the time? Yes, it was just for me at the time. No one. I didn't really tell anyone about it. No one really knew that I was doing it at all. I was very private about it. But as the years went on, I eventually decided to tell my parents and they were like, you are What? So it was kind of fun. It was. It was a long process. But yeah, the beginning it was definitely just a very personal thing for me. And then your younger sister was diagnosed as well. What was that? Like? How old was she? How old were you at the time. So she was 13 when she was diagnosed, she's now 16. So I was 16 when she was diagnosed, and that just broke my heart because I had had diabetes at that point for 10 years. So I totally knew what it was like, and it made me think I would not wish it on anyone, especially someone in my own family. So to see her kind of struggle with it, and because she was diagnosed a lot older, I think it was hard for her to kind of get through it because she knew and remembered and understood what life was like prior. And now the fact that you have to make put so much thought into eating an apple, I think really kind of threw her for a loop, but I was really happy that I was there and could kind of show her the ropes and show her that this doesn't have to be the end It won't stop her. She doesn't want it too.
Stacey Simms 31:02
It sounds like you have a really good relationship with your sister. But you know, it's gotta be hard to you know your sister. So I don't want to make it like it was a perfect relationship, but due to diabetes in some way for you closer, I mean, I kind of hate that because it's a cliche, but you to share it and experience that nobody else in your family could really understand in the way you were going through it.
Morgan Panzirer 31:21
Yeah, it did. I would definitely say that it brought us closer. I mean, we always had a great relationship growing up. I mean, she was the only other girl in the house besides my mom. So we did everything together anyway. And we did have a really good relationship. But this definitely was something that I could share with her and I couldn't really relate to something like that with anyone else. So I think we, I mean, we don't talk about it a ton, but it is something that if I'm having a terrible day, I'm like, Oh, this stays the worst. And she's like, Yeah, I know what you mean. So I think in that way, it definitely makes it easier for sure.
Unknown Speaker 31:57
Okay, so you grew up in a household where After your diagnosis, your parents jumped in with both feet for advocacy. And they jumped in in a way that is unique because your dad is a trustee of the Helmsley trust, which is a as you listen, if you're not familiar, just an unbelievable funder of so much Diabetes Research and so many diabetes advocacy causes and effect. We had your dad on the show last year, but he is a very passionate person, as you know, Morgan, where he was really talking about the need for better education when people get great diabetes devices. And you know, trying to help in that respect. What was it like to know that what happened to you affected what your parents did with their lives? I mean, there's put so much time and energy into this cause,
Morgan Panzirer 32:39
oh my gosh, yeah, it was unbelievable. I mean, my dad became a trustee shortly after my diagnosis. So again, at six years old, I had no idea what that meant. But as I grew up and saw the impact he's having on this community and everyone with this disease, I'm so grateful that he went this way because I really do believe that he's making enormous differences in this community. I've already seen tons of new technologies that have come out, in part, thanks to his funding. So I'm so grateful. And my mom actually has she's a big runner. So she's run numerous half marathons and marathons with jdrf to raise money. So the fact that they're just all in for me and my sister is, there's no words to describe it. It's unbelievable. You've been able to do a lot of things yourself. You were a children's Congress with jdrf. That was in 2009. So how old were you when you did children's Congress? I was eight when I when was that something that was meaningful to you? Yeah, it was a really monumental event, I think because it really marked the beginning of my advocacy. And especially being that little I didn't really understand that I could make a difference prior to this. But when I got there and saw oh my gosh, all these kids are going through the same thing I'm going through and look at this difference we're making on a national level, I think it really showed me that I did have the ability to make a change if I wanted to, and if I set my mind to it. So it was definitely a big step for me and understanding that I had the ability to make a big change for everyone with this disease. And it definitely marks the beginning of my advocacy, as I mentioned prior.
Unknown Speaker 34:19
So tell me about advocacy for an eight year old. I know because I just people listening are kind of thinking like, well, what else? You know, there's children's Congress vote what really can an eight year old do?
Morgan Panzirer 34:27
It was crazy because we're at Children's Congress. We're talking to our senators. I didn't even know what a senator was. I was like, Who are you? Like, you seem really important, but I don't know what you do. Um, but it was really just a place for me to learn and understand and it opened a bunch of doors for not necessarily when I was eight years old still, but when I was older, it really just allowed me to understand, okay, I can do this and I can make a change and talk to these super important scary people. If I want to so I wouldn't say necessarily started my advocacy at eight years old, but it definitely opened that door and set that path or the years coming up.
Stacey Simms 35:10
So in the book, actually, I can you mentioned, you know, sugar and misconceptions.
Morgan Panzirer 35:15
Are there actually, as I say, actually, are there questions that that really have followed you that you would answer? Actually, I can. Oh, there's so many. It's funny, you should say that. Because one of the chapters towards the end of the book actually has a bunch of things that I've heard people say prior about this. And my answer to each of them is actually I can so that's really funny. You should bring that up. So yeah, it's all surrounding kind of the sugar aspect. And that always drove me crazy. Like, oh, you Sorry, you can't have this ice pop. It's not sugar free. And to that, I would say, Actually, I can. So it's really funny that you should bring that up.
Stacey Simms 35:53
Well, I mean, it's something that I think many people with diabetes experience over and over again to the point where you have to decide Are you going to be annoyed and be sarcastic? Or say nothing? Or am I going to be annoyed and continue to educate? Right and that second one, even just as a parent of a child with type one, I try to choose the second one as often as I can, but it really does wear on you. So when I saw the name of your book, I was like, totally can relate.
Morgan Panzirer 36:19
Unknown Speaker 36:20
And you ride correct. That's your sport is, is I'm gonna say it incorrectly as horseback riding.
Morgan Panzirer 36:26
Yes, that is my sport. How do I say that? What's the real sport? equestrian sports? Thank you,
Unknown Speaker 36:33
Unknown Speaker 36:35
I've not talked to somebody with type one who is you know, involved in equestrian sports. Can you tell us a little bit about how you go about doing that? I mean, because obviously, there's got to be equipment, requirements of the sport and concerns about a pump and a CGM. So
Morgan Panzirer 36:50
what do you do? Absolutely. So I started writing actually right after my diagnosis, and at the beginning, it was fairly easy to manage my blood sugar's Because I was young and just doing beginner things, but as I got older and obviously I started wearing a CGM a little later I got a little more difficult because I was riding for longer I was doing more difficult things. So it became a game of trial and error to kind of find the balance of Okay, I need to cut back my Bazell this this much time prior to getting on and then afterwards, I should sip on a Gatorade. So it was a big game of trial and error that definitely got frustrating at times. But then the whole other battle was at horse shows because when you horse show, you're not allowed to have a phone or any sort of electronic device on you. So I'll never forget there was this one show I was competing in and I go in and I do my course. So I do the jumpers for anyone that knows. So I go in, I jump my course and I come out and the judge walkie talkie over to the end gate where you enter the ring and said she has to be disqualified because she has a phone on her and I was like I don't Promise you like, I'll show it to you. It's not a phone. So they ended up being understanding but after that I had to really be conscientious about prior to stepping in the ring, having the person that was managing the in gate radio over to the judge and say she's that does not have a phone. She's wearing an insulin pump. So that was something I found really interesting. Um, but yeah, it was it's definitely an interesting sport to have type one and do for sure. Well,
Stacey Simms 38:28
you know, and obviously, you had to educate them and now hopefully the next time somebody comes through that way, they would know that a pump isn't a phone, but I'm curious too, you know, obviously writing horse is not driving a car, but it is one of the few sports where you're, you're not alone, right you have to stretch but work with me here. In a way you're you know, you're controlling the horse you're in charge, you have to be in your you have to have good enough diabetes control, that you know, if you're going low, you can Have you could have an accident you could get seriously injured for sure. Yeah. I mean, that's got to be something that I know your parents would be worried about. But as an athlete, it's it's a little bit more consequential in a way than like my son. He's played every kind of sport but if he goes low and basketball, he's probably you know, he's just gonna get himself off the court. He's he's not taking a horse
Morgan Panzirer 39:21
Yeah, it's, it's interesting because there have definitely been times where I'm so invested in riding and what I'm doing that I don't even realize how low I am. So I really have to be careful and always be watching I wear my Apple Watch which is a huge help because I just clicked the Dexcom app and my blood sugar pops right up. So that's made it a lot easier but as you said, there's definitely an added component of stress because if something happens to me, I'm either a gonna fall off and get seriously hurt or be by horses going to be running around loose in the ring. So
aren't really ideal circumstances. For sure,
Stacey Simms 40:00
my apologies to you and anyone listening who is familiar with equestrian sports hearing me painfully make my way through trying to describe. But I appreciate it. Obviously, your parents have read the book, and they must be so proud of you. But was there anything in there that you thought? I don't know if I want my parents to read this? Are you? I mean, I know it's nothing terrible. But you know, in terms of, I think sometimes the people I've talked to with type one, are worried that they're going to make their parents worry more, even as adults, they just don't want their parents to worry. And I was curious if that went through your head at all, as you were releasing this book?
Morgan Panzirer 40:35
Yeah, I mean, there's one chapter in particular that comes to mind where I'm just very raw about my emotions. And at home, I'm not someone who's like that. I'm very quiet. And if something's bothering me, I'll go to my room and deal with it there. So I think putting that all out on paper and having that kind of out to the world and then have my parents read it. I don't want to say I was hesitant, but it was it was interesting because I didn't really know how they were going to react to me being like, Oh, I broke down into tears because they don't usually see me do that very often. So I was, I was a little scared as to what they would think like, Oh, no, is she like crazy at our room? Like what is she doing all the time, but I think they just they were very understanding like, if this is how you want to deal with it, this is how you deal with it. You do whatever you need to do.
Stacey Simms 41:25
When I was looking it up on Amazon earlier, I laughed because you know, Amazon has that if you bought this, you might buy that or, you know, bought and there was my book, there was the world's worst diabetes mom and a bunch of other great diabetes books too. But I laughed because I guess with the teenager in the parenting, maybe they put it together. You know, the world's worst diabetes mom is not about really being a terrible parent. It's about the insecurities that we as parents have when we make mistakes with our kids. I'm curious for you. It sounds like your parents gave you an awful lot of independence and had a lot of confidence in you and I Assume your sister as well. Any message for parents of kids with type one who think we're just messing up and we're the worst?
Morgan Panzirer 42:07
You're not the worst, I can start by saying that. I think I would say try to give your child as much independence as possible without making it unsafe. My parents, as you said, gave me a ton of independence. And I think it worked really well for me, but it's also really different. So what works for me may not work for my sister. So you kind of have to be willing to cater to your child's needs and what you think will suit them best. But independence for me was key.
Stacey Simms 42:36
And then I'll flip it around and say, okay, you're you're a college student. Now you're you're not you know, you're not quite done with being a teenager, but the high school experience is behind you. Any advice for teenagers? type one?
Morgan Panzirer 42:47
Yeah, I would say teenage years are tough just because your peers are naturally a lot more judgmental than they are when they're adults. Do what you do. Don't hide anything. If they want to be jerks about it. Let them be jerks about it. That's their problem. And just don't let them get the best of you because I was bullied by freshman year of high school for wearing a CGM on my leg and was shorts on and things like that. So I would just say, don't let the haters hate who cares, they can do what they want.
Unknown Speaker 43:18
And for you now, what are you studying? Did I read you want to be an endocrinologist?
Morgan Panzirer 43:22
Yes, I am studying biology in Spanish on a pre med track. And I'm hoping to go to medical school for pediatric endocrinology. Did you have an endocrinologist growing up that inspired you? When did you realize you want to do something like this? It's funny, it was kind of the opposite. Hopefully, he's not listening right now. He wasn't bad by any means. But I just thought it would be really cool if I had an endocrinologist who also has type one who can relate to what I'm going through and make me feel like I'm not alone. So if I want that from my endocrinologist, I want to be able to give that to others. So I'm hoping that eventually, if I make it through med school, I'll be able to give that experience to younger children who are also fighting type one. That's great. And then someday you could do the next book, which is actually you can Exactly.
Stacey Simms 44:18
Work it. Thank you so much for talking with me. often don't hear about those teen years and growing up with type one until people are adults, so I can't thank you enough for sharing your story. I really wish you the very best with this.
Morgan Panzirer 44:28
Of course, thank you so much for having me.
Stacey Simms 44:33
I will link up more information about Morgan's book, just go to Diabetes connections.com click on the episode homepage. As usual, there's also a episode transcription. I started doing that in January of 2020 of this year, we're slowly going back the catalog I'll probably put the transcripts in for past shows as well. But you know, there's a lot of shows we're up to episode This is 310 if you're keeping track so I'm doing the best I can with transcriptions but 2020 and going forward getting great feedback on that. And thank you, I really appreciate hearing from you. If there's something that you really like or don't like with the show, and the transcriptions have been a big hit, people listen to the show people read the show, and some people listen while they read the show. However, I can serve you That is what I'm here for. And I'm kind of laughing. But really, that's one of the reasons why I wanted to add the transcriptions. I think there's some excellent information. It's not about me, it's about the information and if you can read it, I know some people just prefer that. So very cool. Thanks again.
And, you know, when you go to Amazon, and you see, it just makes me laugh, right? The you see Morgan's book with my book. I don't know why it makes me laugh. I mean, I'm a serious author now. But I do get a kick out of serious author (laughs). I do get a kick out of seeing people I know or have met, along with my book. It's just really a lot of fun. I don't know. Maybe it's silly, but I really get a kick out of it.
All right, great month of shows coming up. I'm very excited about July because we're going to be talking about selecting an insulin pump, not which pump is best, but how do you select one that's like the number one Question all these Facebook groups? What pumps should I get? What pumps Should I get my kid? We're also gonna be talking about pancreas transplant. I've wanted to talk to somebody who had a pancreas transplant for years and years because you hear you know how difficult it is or how does it even happen. And so we've done that and I'm really thrilled to share that interview with you in the coming weeks. And of course, the fiscal would squares. That chaotic show will be out soon as well. So lots of good stuff coming up. More on the way. Thank you to my editor, chunky tennis solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, kind to yourself.
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged