Alisa Weilerstein has been living with type 1 diabetes almost as long as she’s been making music. She debuted with the Cleveland Orchestra at age 13, played Carnegie Hall at 15, performed at the White House at 27, and at 29 was awarded the MacArthur Foundation “genius grant” fellowship. She was diagnosed with type 1 diabetes at age 9 and her first concern, of course, was for her fingertips! Alisa speaks to us from Berlin, where she and her family spend half their time.
In Tell Me Something Good we share stories about girl scouts stepping up and hearing a Dexcom alarm at the Supreme Court.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Alisa mentions playing in concert while pregnant. See that video here
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Episode Transcription (rough transcription, not yet corrected)
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, she was playing the cello before she went to kindergarten. In fact, when Alisa Weilerstein was diagnosed with type one at age nine, her first thought was her fingertips.
Alisa Weilerstein 0:41
I was already quite curious about the cello and the left hand, of course, it's the hand that goes on the fingerboard. And I remember saying to my doctor, I'm not going to click my fingers on my left hand, they won't be able to play.
Stacey Simms 0:50
She was certainly able to keep playing - Carnegie Hall at 15, the White House at 27 and at 29 Weilestein was awarded the MacArthur Foundation Genius Grant fellowship. She has quite a story. It was great to talk to her
and tell me something good girl scouts stepping up. And did you hear the Dexcom at the supreme court hearings?
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'm so glad to have you along. I am your host Stacey Simms, and we aim to educate and inspire by sharing stories of connection. If you are new to the show, I am so glad to have you here a little bit about me. My son was diagnosed with type one right before he turned two he is almost 16 now so it's been a minute, my husband lives with type two. I don't have diabetes, but I have a background in broadcasting and local radio and television. And that is how you get the podcast. I am always amazed when I meet and talk to people with incredible musical talent like our guest this week. To me playing music reading music, expressing yourself through music is like another language. I appreciate music. But I don't have that kind of innate understanding that a true artist has my old radio show co host when I did mornings in Charlotte, North Carolina, where I am now for more than 10 years. And he was also a musician. And they just have this natural ability. I mean a true musician who can write music and read music and play and play by ear. To me it really is something special. And I hope I did this interview with Alisa justice. Because of course we're interested in talking about diabetes, but we talked about music as well.
I also want to let you know, we are not out of November yet diabetes Awareness Month of course, we'll be doing some fun things on social media. I have a big sale going on for the world's first diabetes mom real life stories of raising a child with type 1 diabetes, it is on sale right now use the coupon code November, you've got to use it on my website at Diabetes connections.com. I can't do coupon codes on Amazon sorry. But this covers more than free shipping and everything else. So it's still a nice discount if we're doing $4 off for the rest of the month. So go to the website, scroll down, you'll see the book in the middle of the page there under the most recent podcast episodes. And to use the promo code, you're going to click order a signed copy. The other links take you to Amazon and you can't use a coupon code there. But if you click on order a signed copy, it'll take you to the right place. There's also a little teeny tab on top that says shop.
It's hard for me to believe the book has been out for a year. I hope you're not tired of me talking about it. I got one nasty email this year I will share. Somebody stopped listening to the show two weeks after I published the book because he was tired of me talking about it. I felt like saying to him, you write a book, see if you want to talk about it! (laughs) But I appreciate you you know putting up with it. Especially this year when the whole book tour was canceled. I was supposed to like many of you, right? We were supposed to travel and go places and do things so you know I get it. Of course everybody's in the same boat. But I am going to continue to talk about the world's worst diabetes mom because man it was so much fun to put together and I'm not ashamed to say the response has been fantastic. So if you want to get a copy promo code November at Diabetes connections.com
Diabetes Connections is brought to you by One Drop and getting diabetes supplies because a big pain you know that not only the ordering and the picking up but the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get 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 lifts 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.
My guest this week has been living with type one almost as long as she's been making music. Alisa Weilerstein has a remarkable story she debuted with the Cleveland Symphony At age 13, played Carnegie Hall at 15, performed at the White House at 27. And then she was awarded the MacArthur Foundation Genius Grant fellowship when she was 29 years old. I found her Tiny Desk concert. If you're familiar with those from NPR, that was 10 years ago, I will link that up as well. She is currently in Europe where she and her family live for half the year. I spoke to her. It was back in September when she her husband and their four year old daughter had just traveled back to Berlin from San Diego. Elisa, thank you so much for joining me, it's so interesting to talk to you that you're in Europe, we've got a little bit of a lag here on the call. But thanks for coming in. I
Alisa Weilerstein 5:37
appreciate it. Oh, you're so welcome. Thank you for having me on your show.
Stacey Simms 5:40
Before we jump in and talk diabetes and music. Tell me a little bit about living in Berlin. You live there half the time now?
Alisa Weilerstein 5:47
Yes. Well, I mean, I'm a I'm a cellist I played classical music. Of course, in normal times, I play about 120 concerts per year. And they're split between Europe and North America with an occasional trip to Asia. Of course, during the pandemic, that's been radically changed, obviously. But that's my schedule during normal times. And so it was very important for both me and my husband, my husband, as a conductor, to have a base in Europe as well, so that we're not just constantly on transatlantic flights, more than we actually need to be. So we have a base in Europe, which is Berlin, and it's such a great Center for the Arts. And our daughter loves it here. Our daughter was actually born here four and a half years ago. And yes, that's one reason why we chose Berlin.
Stacey Simms 6:27
I'm curious what the flight was like, and what the experiences like traveling from the US right now, with everything that's going on?
Alisa Weilerstein 6:33
Well, it's interesting, because then we spent most of the pandemic in San Diego. So we were there from March 13. Basically, you know, that that the day that all of the all of the borders shot, and I actually traveled to Germany in June, to play a live broadcast in Hamburg. At that time, it was a two week quarantine in Germany. And so I can't even hear it here in my apartment in Berlin. And at that time, it was even more sort of wacky to travel at that point than it was a week ago, when we flew back here to San Diego with my whole family. At that time. I mean, there were there were so few flights, and there was practically no one in the airports. So I flew from LA to Newark, of course, you know, you don't take your mask off your face, obviously. And even though there were like 10 people on my site, and not more than that, and then I had 10 hours in Newark, and then I suppose from Newark to Frankfurt, and I got a test immediately upon arrival, they were even doing testing at the airport at that time. And then my results arrived within 48 hours. You know, I tested for the for the virus and also for the antibodies, which unfortunately, I didn't have the antibody, I was actually disappointed. But anyway, I flew back to San Diego to rejoin my family. And then my whole family to my husband, my daughter and and also our daughters many. We flew back to Berlin. Again, it was a very few flights to San Diego, Chicago, Chicago, London, London, Berlin with a four and a half year old, you can imagine what oh, my gosh. But, you know, we tested right before literally before he went to the airport, we went to a lab to test and then we got tested at the airport and in Berlin Tegel airport there. They're doing testing upon arrival. And those results came within 24 hours. And potential street for me got here. So my girl was able to go to school right away here, which made her very, very happy. Great. Yeah,
Stacey Simms 8:18
yeah, I'm glad. I'm sure you're all glad to be settled.
Unknown Speaker 8:21
Stacey Simms 8:24
So let's talk about type one. You were diagnosed at nine. Do you remember your diagnosis story?
Alisa Weilerstein 8:30
Oh, yeah. Very well. Yeah, it was actually the month before my 10th birthday was March first 1992. And as you remember that, of course, like 92 was a kind of critical year in diabetes research, which definitively proved that tight control could ward off the risk of complications by you know, whopping percentage, and they are 66% less likely to get complications if the agency was 7% or below. So that was encouraging. But yeah, my diagnosis story was essentially, for the couple of months leading up to my doctor's visit, I exhibited the classic symptoms, I was urinating frequently with who had extreme thirst, and I was losing some weight. And I've always been a kind of muscular body type. And I suddenly became, you know, sort of like belly dancer and not like my energy was okay. And was was actually sort of normal until like, about a, I remember, like, a few days before I went to the doctor, and I was just feeling just sort of tired, which was very unlike me. And my mother took me to the pediatrician. She said, you know, maybe you have a bladder infection because I was, you know, going to the bathroom every hour or something like that. So I remember we got a urine sample from home, which the doctor had asked us to do that. And so you know, I peed into a jar basically. And then we went to the pediatrician and, sorry
Stacey Simms 9:52
It's a type one diabetes all the time.
Alisa Weilerstein 9:58
The diabetes podcast, so I'm your listeners are familiar with this. And anyway, I am submitted the sample. And then I remember the doctor who might like very much, I actually took my mother aside, and there was some whispering, which I didn't know about. And my mom looked very serious. And she said to me, Well, the doctor thinks the jar was contaminated. So just give her another example. And so I went to the Darrell bathrooms and gave her a sample from the sterile cup. And unfortunately, the result was the same, which of course, showed sky high glucose. And the doctor said, Well, you know, you need to go straight to the ER, and doctor told me, so do you need to get a blood test? And so I thought, Oh, my, you know, I don't really like and then I remember asking my mother, I said, well, Can I at least get some m&ms afterwards. And my poor mother, she, I mean, she didn't know much about diabetes, but she heard that word diabetes mentioned. And she knew that that meant a sugar issue. And so she just kind of looked at me and she opened her mouth, and she closed it again. And ah, and, you know, we drove to the hospital. And then the rest was really kind of blur. My father, you know, I remember my mom calling my father saying you need to get here now. And my, my little brother at the time was four. And I remember them all kind of standing around me and I was getting weighed. And then suddenly, I was like, on a gurney with IVs, and needles sticking in and out. And then doctors coming in saying, Yes, we think it's juvenile diabetes. And of course, you know, somebody was in examining my tongue to see how to hide it. And I might I, I might have been, and it was very kind of dramatic. My blood sugar was 464. At the time, they said that actually, we caught it relatively early. If you can believe that. I think at that time, some kids were coming in already, you know, the 800, or something like that, coming into with, you know, really, rather advanced ketoacidosis. And I wasn't there yet, I was throwing some ketones. It wasn't yet in kind of a dire situation. Anyway, I was then in the hospital for about a week just for the kind of diabetes education and it was kind of a crash course in how to manage type one diabetes. And at the time, my insulin regimen was NPH. And regular to the fast acting because it was it was even before the time of humalog. And my blood sugar meter took 45 seconds to read the blood glucose results and counting carbohydrates and all of that stuff. So this was my diabetes education.
Stacey Simms 12:16
At nine years old, you were already on your way to playing music and performing as you did anyone say anything? I had to fit your first question, right? Can I still do this? What did they tell you about your musical career?
Right back to Alisa, she's gonna answer that question. But first diabetes Connections is brought to you by Dexcom. And they have this great partnership with Tandem now with basal IQ and control IQ. And we started on basal IQ as soon as it was available. And this is the Dexcom g six tandem pump software program, and immediately started doing less work for better results. When we switch to control IQ, oh my gosh, even less work even better results with diabetes. I don't know if you remember, but years ago, they started with just putting the CGM information on the pump and it didn't communicate, it's just there. But this is something else, the whole system keeps spinning more steady. His time in range has increased significantly, his agency, you know, I don't share exact numbers, but it is the lowest that he's ever had. Of course, individual results may vary. But to learn more, just go to Diabetes connections.com and click on the Dexcom logo right back now to Elisa sharing what she was most worried about at her diagnosis.
Alisa Weilerstein 13:38
Well, this is why I say 1992 was actually I mean, if one had to be diagnosed with diabetes, you know, at any time, it was an encouraging year to be diagnosed. Because I mean that the doctors who actually were well informed said, If you manage this, well, you will be able to live exactly the life that you want to live. And that was the constant messaging from my doctor at the time, all the nurses around each month this is and and they were teaching me how to do things. And he said this is the reason you have to do this is so that you can live a full life and do all the things that you want to do and play the cello do go to school, see your friends, play sports, do all of these things. And I remember there was just one issue, where I kind of had to make a special accommodation, which is what the finger picking, because of course I was already as you say I but I was already quite curious about the cello. And the left hand, of course is the hand that goes on the fingerboard. And I remember saying to my doctors, I'm not going to click my fingers on my left hence I won't be able to play and I but however if I was able to prick my fingers on my on my bow hand that wouldn't have affected that. So I only used three fingers to prick and my whole life after that I only I only use the same three fingers to pick my finger, my test my blood sugar, and luckily they accommodated and they basically well as long as you do it and as long as you don't hurt yourself. Sure. That was the answer.
Stacey Simms 14:57
I was going to ask you about that. Because I couldn't imagine especially the amount of finger prick you had to do back then. Yeah, Listen, I've, for somebody who nagged her son for years to rotate fingers do a different thing. Yeah, you were able to just move it around enough so that you didn't have issues with just those three fingers.
Alisa Weilerstein 15:14
No, I didn't. And, and even at the time, I mean, the lancets were very good, very painless, and very thin. So I mean, there was actually there was never an issue. And I mean, at the time, the recommendation was to test four times a day, I remember at the time that was considered like being very responsible. Of course, now, we would probably say that's kind of bare minimum. But as I got older, and I tested more often, I mean, I was asked to test before the continuous glucose monitors were accurate enough to kind of rely on I was testing 10 times a day, and I was just using those same three fingers.
Stacey Simms 15:43
That's so interesting. And you've mentioned a couple times 1992, we should just step back and mention as you listen, if you're not familiar, we're referring here to the dcct trial, the diabetes control and complications trial, which was really the first time as you said, that they believed that you could make a difference. I mean, it's hard to believe that before that time, doctors thought, Well, that's it if you have type one or juvenile diabetes, as they called it, you wouldn't live past 30. And this showed that you could,
Alisa Weilerstein 16:09
yeah, and you would kind of have to go to an alternative doctor to get anything more hopeful, or any kind of agency with it's really yeah, and
Stacey Simms 16:16
I'll link up more information on the dcct. It was such a pivotal time and diabetes. And it wasn't that long ago, when you think about it now. Alright, so you're then on your way, you're doing what you need to do. You've got your family on board, you're playing music, Cleveland Orchestra at age 13. And on and on. And I have to say, when I watch someone play the cello, and please forgive me, I am so musically ignorant, except that I enjoy listening. It seems like it's very athletic. It's a very physical looking instrument to play. Can you talk about that? Is it I assume that
Alisa Weilerstein 16:48
yes, it is? Oh, yeah, yeah, completely. And especially I'm not very tall, myself, I'm about five to my posture is good. You know, you have to learn how to use your body in a very efficient way, like kind of a lot of Alexander Technique. And yoga concepts can apply very well to pretty much any instrument, but kind of the cello, especially in terms of the strength that it takes. And truly free with instruments, you have to basically use your body to know how to use the natural energy and not natural body weight very well. And of course, it just takes a lot of years of practice to build it up. I mean, there's no substitute for time really, with that,
Stacey Simms 17:21
you must have by now of routine and you you the physicality of it, you've got that down. But when you were younger, and first learning, what did you do? Did you keep tabs like in your chair, or in your case, you know, how did you manage diabetes and playing
Alisa Weilerstein 17:35
I mean, I kept glucose tablets pretty much everywhere. playing the cello itself did not cause low blood sugar, I mean, there were a couple of pieces that I knew were kind of workouts in a way and that I would sometimes eat a little bit or maybe drink a little bit of juice before, I mean, like the way you would before going for a run, just to have like a little bit of energy to make sure that you have a threshold that can kind of carry you through if you're going to drop a little bit. So it was a lot of trial and error. And I just found out kind of what worked in I mean, in terms of going on stage, especially before the pump, certainly which I got an A pump when I was 16. So that was 98. And certainly before the CGM, I would test before going on stage. I mean, I've just tested in general much more on concert dates than on other days. And I always like to get to the hall about an hour before so that I could slowly put the gown on. So they put me so they kind of put my ducks in a row in terms of playing and just warming warming up slowly and kind of just getting myself in the mental space. But it was also blood sugar wise, it was just important for me to be able to test one hour before, kind of every 15 minutes. And then like two minutes before I'd walk on stage just to make sure that I was not going to get low on stage. I mean, like if I was 170, or something on stage, it wasn't ideal, but it was better than being 65 when you're going on stage because of course below that, then you kind of start to lose coordination. I mean, my ideal number to go on stage would be like 130 because the blood sugar's maybe slightly on the high side, but it's good enough that I felt normal. And I had a threshold to drop, so that if I walked offstage, and I was 85 or something like that would be fine.
Stacey Simms 19:10
You mentioned there were a couple of pieces that stand out as being more physical or do can you share those with us? I'm curious, which anything stand out?
Alisa Weilerstein 19:20
Sure. There's a concerto, which means that there's a solo instrument with an orchestral accompaniment, and the composer is Prokofiev, who was a Russian composer who actually died the same day that Stalin died. Oh, my 1953. Yes, the same day. So of course, nobody paid attention when he died, unfortunately, because it was one of those really, really tragic ironies to add to so many tragic ironies of the time, but he wrote a fantastic masterpiece for each other an orchestra called the symphony concert count, which is a symphony concerto. It's a 45 minute kind of tour de force, for the cello and for the orchestra as well, but especially the solo cello where which is just Just wild, very, very, very physical, technically very, very challenging. And it's just kind of an endurance exercise. And I remember just being very sure that I was not going to get low on stage. So I did a few practice runs of that pizza. The first time I played it in public, the first time I played it in with the orchestra, I was about 16 or 17 years old, I did several kind of practice runs, just running through with it with a kennel reduction for friends and for for my parents and things like that. So I knew kind of what my blood sugar threshold was with that piece in particular, it's funny, it was
Stacey Simms 20:34
Prokofiev. All I know is Peter and the Wolf.
Unknown Speaker 20:37
That's what I think. Yes, of course. No, it's just what I pay for my daughter all the time. You're fantastic.
Stacey Simms 20:43
It's funny. Oh, yeah. That's great. Yeah, yeah, at this point, it's almost like a professional athlete. In terms of I assume you have a routine, you know, you know,
Unknown Speaker 20:52
look, at this point, you
Stacey Simms 20:54
know, what you're doing. I'm curious. But anything throw you for a loop in terms of diabetes. These days, I'm thinking about advice for, you know, younger people who are starting out in a musical career, or, you know, just anything like that. So what throws you for a loop, we're in there?
Alisa Weilerstein 21:10
Oh, well, sometimes I can have a very inconsistent response to stress or to nerves, because generally speaking, I don't get nervous on stage. But perhaps the kind of travel situation, especially these days can make me quite stressed out and, you know, say high strung and nervous and then my blood sugar just shoots up, sort of out of nowhere, or it can be like a kind of a sticky high, and I can't get below 185, no matter how much I mean, like I can be, like, feel like I've got an ID of insulin and nothing brings it down until I relaxed, that can just sometimes be really kind of flummoxing and very frustrating. And then of course, I get more stressed about the blood sugar. And then of course, the stress response doesn't go down. So that's something that I just find very frustrating. And something that I feel is kind of out of my control and less like kind of just force myself to do some deep breathing in a kind of airport travel situation, which is stressful. Other things that life can throw your way. unexpected things I just signed, you know, test test test, look at the CGM as much as possible. And then you can catch the kind of unexpected highs and lows much much more easily. And so that's my advice to anyone just test as much as possible. Or if you have a CGM. Just make sure that you're really aware of what's going on there.
Stacey Simms 22:20
Can I be nosy? And ask where you were your tech? Yeah, she during performance, of course, I'm trying to think of the body motion and where it's, you know, where it makes sense.
Alisa Weilerstein 22:29
Well, not on my arms. Probably imagine, I put my infusion set in the center of my stomach. And when I'm wearing a gown, there's, I'm not sure even which company makes any more. But I think there's the diabetes mole, which has something called the five thing and this kind of like a garter belt, and it has a pocket, which is where I put my pump, when I'm wearing a dress or a concert gown.
Stacey Simms 22:52
Right? You've mentioned your daughter a couple of times, if they did, were you concerned, I obviously, you know, it takes a lot of work when you're wanting to get tight control before you get pregnant. I'm curious. Sounds like your doctors told you from the get go that you'd be okay. Can you share a little bit about that journey in terms of, you know, deciding to have your child,
Alisa Weilerstein 23:10
it's something that was kind of hanging over my mind. And it was it that's a personal thing. It's just not to say that, oh, you get a diabetes diagnosis, and you worry for the rest of your, let's say, especially if your child 17th, whether you're going to be able to have a healthy pregnancy or not. But I did actually have that kind of worry. And I would say I spent probably two years before we decided it was the right time to try and conceive just kind of experimenting to see how tight I thought I could get the control, especially with an intense travel schedule. And I found that at the time, the CGM was getting better and better. Like as you know, back in, you know, 2008 2009, the CGM was maybe 40% accurate assess. I mean, it was just terrible. I was like throwing it against the wall sometimes because it would just as I took Tylenol or something, it would go up to show that I was reading 400 because it couldn't, it didn't react about this kind of medicine and other things. And it was fall off. And it was just awful. So I get back two years before, you know my daughter was born in 2016. So this was like 2014 or so. I mean, my agencies had been in the low sevens at the time, and then I got them down to 6.8 6.6. And I thought, Okay, I think I'm going to be able to manage this. Because I was doing a lot of fine tuning. And then as your son will probably relate to this, like, the more you pay attention, the worse you actually think your blood sugar is, but it's actually your budget is actually getting much better. You know what I mean? Yeah. And so this was something that I realized that my doctor was telling me I was doing it, basically. And I was like, Really? I don't think I'm doing and then I saw Oh, my average was like 129 Oh, okay, that's not bad. But I mean, of course, it needs to be better than that for pregnancy. But this is in range. I could finally envision, you know, having an average of you know, 110 or something like that. And so we got pregnant and of course, the pregnancy itself is the biggest motivator. And I, of course, I was poked and prodded more than I care to remember during the pregnancy because of course, I was classified immediately as high risk and I had to see the doctor, you know, all the time, but I was working and traveling until 35 weeks. Oh, well, you can find a YouTube video of me doing my second to last concert with our daughter, my daughter and my belly. I played Hindemith concerto with the Frankfurt Radio Symphony. And my belly was absolutely huge. And then like, I'm walking on stage with this thing. And I saw myself, wow. I mean, I remember what it felt like. But seeing it now as it was some distance. It's kind of kind of amazing to me that I did that. But it was important to me to keep going. And I generally had a very easy pregnancy until the very end, and I felt best. And my blood sugar was best when I was active. You know, I was under strict supervision of my doctors, but I managed to do that.
Stacey Simms 25:50
How do you talk about your diabetes with your daughter?
Alisa Weilerstein 25:52
What does she know? She knows, in a very general way, if she sees me drinking juice, she knows that I'm low, because I don't drink juice. Otherwise, she knows that I have diabetes, she knows the word diabetes, and what you know, let's say in a very general way, what it is, and she knows what my medicine is, and that she's not supposed to touch it. And she can watch me kind of handle it, things like that. But that that's this is only Mama's territory to kind of handle things like that. So sometimes she likes to kind of look at my pumpkin to know what it does and things like that. But other than that, she doesn't know too many other details.
Stacey Simms 26:22
One of the things that when we were talking about coming on the show, I noticed that you're working with he Genesis, can you tell me a little bit about what you know who they are,
Alisa Weilerstein 26:31
he Genesis is? Well, it's an amazing company, they don't only work on diabetes research, they work on kidney disease and liver disease. And really, they're kind of primary goal is to make sure that there are no organ shortages for anyone who needs them. And so what they're working on is Type One Diabetes islet cell transplants. So they have an incredible immunology team, which I've been in touch with a bit. And it's just, it's very, very exciting, the research that they're doing, and my association with them really is to kind of spread the awareness of what it's truly like to live with type one diabetes, and to stress the need for a cure. Because nowadays, with biotech, making such amazing advances, sometimes people around me who don't know me, so well look at me, and they they don't really even know that I have diabetes, and they say, Oh, well, you make it look so easy. And it seems like with the technology, you can live a very, you know, you What do you need a cure for in a way. And this, of course, is exactly the wrong kind of message that you want to send us and Well, yes, I'm a very positive person, and I manage my diabetes as best I can. And I have the technology and the knowledge to do that. However, as we were saying before, living with Type One Diabetes is a 24 hours a day, seven day a week, 365 day a year job. Even with the technology, there is not a moment that goes by that you can really relax about it, you always have to be paying attention. I don't know how to look at a plate of food and not count the carbohydrates. And I don't know how to go for a run without thinking, Okay, how is this going to affect my blood sugar is my pump actually going to react to that and say, if I if I go for a sprint, how many glucose tablets do I have? Am I gonna drop too low to actually finish it, that kind of thing. And that's even with the technology that we have now, not to say nothing of hyperglycemia, gun awareness and all of these other things that we know are dangers with living with type one diabetes, and you as a parent of a diabetic have a type one diabetic who is luckily very well controlled. This is probably something that that you were always concerned about hypoglycemic unawareness overnight and things like that. I know that this was certainly something that my mother probably lost countless hours of sleep over. And type 1 diabetes is, you know, to say nothing. Also at the expense of managing type 1 diabetes, we all know what insulin prices are, we know what the prescription medication needs are. And the fact that type 1 diabetes is actually the most expensive chronic disease to treat of any chronic disease. And so this is really why we all need to be lobbying this and countless other reasons. This is why we are all lobbying for a cure. Not treatment, pain, of course, better treatment, but in the absence of a cure. But the ultimate goal, obviously is is a real cure.
Stacey Simms 29:08
We didn't talk much about music during this interview. I didn't know you were here to talk about. Okay, that sort of thing. But you have been playing according to what I've read you really been playing since probably before you remember much right? Did you start playing cello at age four?
Alisa Weilerstein 29:23
I did. Yeah.
Stacey Simms 29:24
Is it still exciting? Is it still challenging? Is it still fun?
Alisa Weilerstein 29:27
Oh, yes. And I'll eat all of the above. Yes, challenging, exciting, fun, frustrating, wonderful. tear my hair out type of frustrating sometimes as well. But you know, is one of those things where there's no concrete goal, really, I mean, you just have to keep growing. And in a way, there's a kind of a parallel with diabetes management, there are two because as we know, there's no way to do it perfectly. And you have to just do the best you can. And so that's like being an artist. You're constantly striving to be better to be the most studiers to yourself. To the composer's to what you're trying to say, you know, you're always searching for ways to do that better and to do it more clearly. And to do it more Honestly, I'm always experimenting.
Stacey Simms 30:09
Well, Lisa, thank you so much for joining me and for making time to talk about this. It's been a crazy time we're living in now, but I wish you the best as you're now in Europe. And, but really, thank you so much for spending some time with me and my listeners.
Alisa Weilerstein 30:23
Oh, my pleasure. Thank you so much for having me on your show.
Unknown Speaker 30:31
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 30:37
I will link up more information you've got here Elisa play. So I'll put a lot of that in the show notes, a couple of different links, including, you know, she mentioned that video where she was pregnant, I found that and she obviously looks great. But Josh, he plays with such passion in every video, I think you'll love it. So I'll definitely link those up. Whatever app you're listening to, if you're listening on an app, they always have show notes and you can often get the links there as well. But if you have any trouble as I always say just go back to the homepage and that will help you out. Tell me something good in just a moment. Did you hear the Dexcom at the Supreme Court we're going to talk about that. But first diabetes Connections is brought to you by g Bo hypo pen, 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 Jeeva hypo pen comes in. It's 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 in usability studies 99% of people were able to give Jiva correctly, I am so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g book shouldn't be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon comm slash risk.
Didn't tell me something good. This week, let's talk about the Girl Scouts for a moment. This is all about Isabella. She was just diagnosed in April. And she is part of a Girl Scout troop. Her mom Carrie posted a photo and I wanted to talk to her about that it looked so great. And here's what happened. Isabella is part of a Girl Scout troop. And she did a presentation on diabetes for diabetes Awareness Month. But this went a little bit further than a lot of the presentations that we have seen. And Isabella let everybody or asked everybody to do a finger poke to experience a little bit of what she goes through. And I'm laughing because the photo that's posted and I'll see if I get permission to share this is Isabella poking an adult's finger, and the adult is looking a little apprehensive. But there's this little girl in the background who just is very concerned, she's got this look on her face. Like really? What do you have to do that all the time? You know, it's a wonderful picture to show the empathy, I think and really also, and this might sound a little bit flowery, but I mean, this the bravery of Isabella, it's not easy to show other people, all the stuff that you have to go through when you have type one. And you know, maybe her friends would be scared or maybe they would treat her differently to have the support that she has, I think is really special. So Carrie, thank you so much for sharing that. Isabella, congratulations to you for sharing all of that. And good on the Girl Scout troop. That's awesome. Our next Tell me something good comes from the highest court in the land. Last week, the Supreme Court heard arguments about the Affordable Care Act. This is the third time in eight years that the Obamacare as it's also known, has been in front of the Supreme Court. But what I want to focus on is Justice Sonia Sotomayor is Dexcom Yes, of course, many of you already know that. One of the justices lives with type 1 diabetes. If you haven't read her incredible biography. I will link that up in the show notes. And yes, she is one of my dream guests. So somebody helped make that happen for us. I reached out to the press office, I'm gonna continue to work it will get her on one of these days. But her Dexcom apparently went off crystal a prick. liano heard it. She is an incredible diabetes advocate. And she was the very first guest on this show. Yeah, back in 2015. And she tweeted out that she had heard it she thought it was her Dexcom going off, but it was Justice Sotomayor is and that sparked a little bit of conversation about why would it be going off as a clerk kind of bring her juice box? And is it frustrating that you can't silence all the alarms? And why would you want to silence all the alarms and it was interesting to hear people go back and forth about that. One thing that did come up if you do want to silence the alarms, and look, I know we want that urgent low to be going off, but you are grownups as you listen, and a lot of people do not want to blaring at their workplace or they want to have a different way of doing this. Right. We all want our DIY stuff. If you don't already know one workaround is to stick headphones into the jack on your phone and then the alarm will go off but it'll go off in the headphones and it won't bother anybody else at work. As a mom, I don't want you to turn your urgent low alarm off. I mean, come on. I'm a mom, but I get it. So that was one thing but came up. But isn't that interesting? I have all sorts of personal and prying questions for Justice Sotomayor. Maybe that's why she doesn't want to come on. And talk to me about, hey, where do you put your Dexcom? Do you use skin tack?
Unknown Speaker 35:12
We would have more important things to talk about. I
Unknown Speaker 35:13
Stacey Simms 35:14
if you haven't told me something good story, please send it my way. Stacy at Diabetes connections.com or posted in the Facebook group Diabetes Connections, the group. I feel like this month has been busier. And not just because it's diabetes Awareness Month. I'm actually I there's stuff going on. I'm doing panels. I'm taping things more than the podcast. So it's kind of fun. And I'm feeling more energized than I have been in a while, which is nice. This weekend. I'm participating in the healthy voices conference. This was supposed to be in the spring, I think we're supposed to be in Dallas. I mean, I can't even keep track of the number of airline tickets. I had to reschedule, like most of you. But I'm excited because I'm not just talking about diabetes. I'm actually not even talking about diabetes. I'm talking about podcasting. And I'm talking about teaching podcasting. And I will be teaching health advocates, patient leaders how to podcast and how easy it is, you know, not to be afraid of it, how their voices are so important, but truly, it's not an esoteric, you know why you should podcast or your voice matters, which it very much does. It is down and dirty. You plug this microphone into this program. Here's how you get your RSS feed on Apple. I'm thrilled to be doing this. And if as you listen, you know somebody who wants to hear more about that stuff. podcasting is obviously my passion and I love helping more people get started. As this episode airs. I believe it will be tonight, I am taping something that will be for air in December. It's the annual Wait, wait, don't poke me, which is a game show that I do for friends for life. It is a take off of the NPR show. Wait, wait, don't tell me. I love it so much. We have so much goofy fun, and you'll be able to hear that you'll be able to watch that, if not at the conference in December. Shortly thereafter, I'll make it public and we always have a good time. Please remember that all this month you can get the world's worst of diabetes mom real life stories of raising a child with Type One Diabetes for a big discount for dollars off at Diabetes connections.com use the promo code November, he makes a nice gift for the holidays. Boy, I'm so bad at this advertising stuff. But you can go ahead and read the reviews on Amazon. You can purchase it on Amazon as an audiobook or an E book or head over to my website and get the discount. And I forgot to mention if you buy it off my website, I'll sign it for you. There's a little form on the on the very bottom of the order form. When you fill it out. It'll say order notes and just put if you want me to personalize it, or anything you want me to write, assign them all but if you put it in there, I will personalize it for you. thank you as always to my editor john Buchanan 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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Staying in the US Military ater a type 1 diabetes diagnosis isn't easy, but it can be done. Meet Jason Cyr. Diagnosed in 2011 while deployed in Africa, he was able to return to the Army and retire on his own terms a few years later. Jason is an élite cyclist and now a cycling coach.
Stacey mentions another veteran who was able to stay on active duty after a type 1 diabetes diagnosis. You can listen to our episode with Mark Thompson here.
In Tell Me Something Good diabetes month stuff, a big milestone for the college diabetes network and a new podcast about diabetes and mental health.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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 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 0:28
This week, we're celebrating Veterans Day by sharing the story of Jason Cyr. He was diagnosed with type one while serving in the US military deployed in Africa in 2011.
Jason Cyr 0:40
You know, I was like oh my gosh, this is like my career is on this trajectory to continue to serve whether it's special operations or just back to the regular army. I really enjoy this I started because I really love working with soldiers mentoring soldiers leading soldiers and I was like this is all over now. So now what am I gonna do?
Stacey Simms 0:56
Cyr was able to stay in the military. He shares that story what he's doing now and why I have a photo of him on a unicycle
In Tell me something good. Lots of Diabetes Awareness Month stuff and a big milestone for the college diabetes network.
Welcome to another week of the show. I am so glad to have you along. I am your host, Stacey Simms, and 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, we are getting close to his 14 year diversity. My husband lives with type two, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast.
It is of course diabetes Awareness Month. So there's lots of things you're seeing if you follow me on social media. I'm posting as I do every year, photos, stories of people in the Charlotte, North Carolina area where I live, who live with diabetes. And I also and this is the first time I'm doing this in diabetes Awareness Month, I'm running a contest, I'm running two contests, and they have started as this episode first airs, if you're listening to it, the week of veterans week of 2020, the contests are going so I'm not gonna spend too much time on them here because they are social media only one of them is in the Facebook group Diabetes Connections, the group you have to be in the group to take part and the other one is on my Instagram and Instagram for me is only Stacey Simms, I do not have a separate one for the show. It's enough. So you get pictures of me walking my dog and pictures of my husband cooking and diabetes awareness stuff and podcast stuff all in one Instagram feed.
I want to give a brief shout out and thank you to the companies that are helping out with the Instagram contest. This is a multi company prize giveaway, we've got a lot of people taking part, it's possible that I may add to this list, and I will certainly revisit it. But big thank you to the folks at NRG bytes. Pump Peelz RX Sugar, Dia-Be-Tees, Wherever EuGO, T1D3DGear and GTTHL Apparel and to the world's worst diabetes mom, the book we're giving that away to I will list all of those fabulous people with links to the companies in the show notes Just go to Diabetes connections.com. But the best way to find out more about them is to head on over to Instagram and take part in that contest. big thank you to everybody for taking part in that.
Kind of a subdued Diabetes Awareness Month, I think for many people with the election in the US and just a lot of diabetes burnout out there. So I hope the contest is a bright spot. But I'm also doing a panel that is this Friday, as you listen on November 13. And that is with my friends at One Drop. We've put together a great panel, we're going to be talking about community, how to get more involved, what we get from community and some surprises there. And we are talking to people with type one, type two and parents of children with type one. And that's going to be a lot of fun that is live on the Diabetes Connections Facebook page, and One Drop will be amplifying it as well.
And speaking of One Drop Diabetes Connections is brought to you by One Drop and I spoke to the people there. And I've always been really impressed at how much they get diabetes. It just 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. One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is a member of a very small club. Not only was Jason Cyr diagnosed with type 1 diabetes while he was in the military, he was allowed to stay in. And you may recall, I met Mark Thompson last year I spoke to him last November. And until this interview, Mark was the only other veteran I've ever talked to personally, who was able to stay in the military. After a diagnosis Mark story is slightly different. His career path after is different as well. I will link up more about mark in the show notes for this episode, you can go back and listen to the prior episode, and learn more as well. And those show notes and the transcript as always, at Diabetes connections.com.
Now the military policy in the US is pretty straightforward for enlisting, you cannot enlist in the military with a chronic condition like type one. But there is just just a bit more wiggle room if you're diagnosed while you're already in. So Jason Cyr was diagnosed while deployed in Africa. And he thought as you can understand that his symptoms were you know, from the weather or the altitude or all of the extra activity, he always does big runner and a big biker. He's going to tell that story and what he's been doing since he retired from the military in 2016. Jason, thank you so much for joining me, your story is pretty remarkable. I'm excited to talk to you.
Jason Cyr 6:16
Oh, well, thanks for having me, Stacy. I really appreciate I don't know if it's a remarkable story. But I appreciate you saying that. I'm flattered.
Stacey Simms 6:22
You're the second person that I've interviewed or even have known with all the hundreds of maybe thousands of people that we've been lucky to meet the diabetes community who has been able to stay in the military after a type one diabetes diagnosis. So I'd say that's pretty remarkable. And I'd love let's just start right there. Can you tell me what happened where what was going on when you were diagnosed?
Jason Cyr 6:42
This was, oh, gosh, it was 2011. I was deployed to sock see the Special Operations Command Horn of Africa. And I was working in Kenya for that organization, basically, helping to do some work with with the Kenyan military. And we kind of set up well, that kind of we had set up an American style Ranger School there. And I was helping a lot of the officers and enlisted folks just make that organization and that school run more smoothly. I am a Ranger School graduate. My career started actually, in the 75th Ranger Regiment, specifically a third Ranger Battalion, spent most of my time at sea company. But so I was there. And we were, were doing some training. And because we were living in the Mount Kenya area of Kenya, it was that elevation. If I recall correctly, this is going back a few years now. I think it was about 11,000 feet or living that. And so I and I was running every day, I was probably running 10 miles a day or something like that, just because I didn't have my my bicycle there. And I was running with some Kenyans. And so I just kind of had some signs and symptoms, you know, the polydipsia polyuria weight loss, and I just sort of chalked it up to Hey, I'm eating different foods, and I'm living in at times in an austere environment and running every day. And like I said, at elevation, so I just kind of dismiss those things.
Stacey Simms 8:06
And I'm gonna just jump in polydipsia polyuria really thirsty really have to pay?
Jason Cyr 8:10
Yeah, exactly. just translate for me and drink. Yeah, sure. And drinking like a gallon of water that you know, cup. You know, I don't know. I betcha I was drinking a gallon of water a day. But I just sort of chalked it up to like, Oh, it's fine. I'm a special forces guy. This is normal. You know, we're supposed to be able to just sort of, I guess suck it up. Anyway, I did have a medic with me on the deployment of Special Forces medic at 18 Delta. And he multiple times said, Hey, you should there's something wrong with you. You've got to go get checked out. So I think he had reached out to the our battalion surgeon and the surgeon had had come down to to actually go and climb Mount Kenya with me. Like on a weekend, a four day weekend we had off. And so anyway, we went climbing mountain and after that, he said, Hey, you got to go get looked at so I had a meeting with I think that defense attache at the at the embassy in Nairobi A few days later. And so I said, Yeah, when I go down there, I've got to meet with him. I've got to brief him on some stuff that we're doing. And I'll go get checked.
So I go down to the hospital after the briefing. And I present with like a blood sugar of like 840 I think, a one C of like 14. So at that point, obviously we knew something was wrong. superfit guy didn't think it was type two, but I was thinking I can't be type one. I'm 36 years older, or whatever it was 37 maybe at the time, wow. That of course starts a cascade effect where they evacuate back to I think we're in Djibouti at that time, and then eventually on to launch to Germany, where, you know, I got some more testing, done some more formal testing done and they said, hey, you've got type 1 diabetes. So you know, after probably a 15 minute pity party, I said Well, I'm gonna have to own this. So I went from there. Yeah, I guess at that point, I went to Fort Belvoir and Walter Reed Medical Center and got some more things done, figured out and then I went into the what's called the ward Transition battalion where they basically start proceedings to, you know, put you out or medically retire or whatever out of the military.
And I guess long story short, I had some great officers that I worked for a two star, and at the time a full bird Colonel that that just said, Hey, you know, you can stay and we've just invested all this time and money in you. I was just about through grad school later on while I was there, and they just said, Hey, we know we're going to retain you. So you go to this medical board, and the board decides, hey, we're gonna put you out. But if you can provide overwhelming evidence that you can stay in and do it safely, and you're going to have these folks that are going to, I guess, you know, not deploy you or put you in an environment where you can make a bad decision if you're hypoglycemic, or something will let you stay in. And so, you know, I think at that point, I was probably at 17 years or something like that. So I really only had three years ago, and my company command was up, I was in a staff position. So there's probably little harm I could do if I had a had a low or something like that. And I think at that point, I had displayed that I you know, had run a marathon I was racing factor racing and a category one and, you know, elite level of still doing some like UCI races. And I think I had displayed that I owned the disease as well as you can, in that short amount of time. And the board made a decision to let me stay in 220. I actually ended up doing I think, 23 years all together. So I ended up staying, and probably six more years, and then retired.
Stacey Simms 11:26
All right. It's an incredible story. I have questions. You mentioned, when you were diagnosed, you had a 15 minute pity party. And I'm just curious. Now I'm assuming that's a little bit of an exaggeration. I'm not taking anything away. If it was 15 minutes and moved on. That's fantastic. It's amazing. But what what really went through your mind, because you had been, as you said, 1718 years in, you didn't know yet that you were going to stay. You didn't know yet that you'd be able to continue with marathons and bike riding and doing everything that you did, do you mind and I hate to get so personal. But just from my own experience, I had a little bit more than a 15 minute pity party when my son was diagnosed. I'm curious what really went through your mind at that moment?
Jason Cyr 12:06
Oh, well, you know, I think after 17 or 16, whatever it was probably 17 years of service, you're kind of like, Man, I've done all this stuff. I've served in all these great units. Why me? I've always been super fit. I think I just, you know, I was like, Oh my gosh, this is like my career is on this trajectory, to continue to serve. And you know, whether it's special operations, or just back to the regular army, I really enjoy this. I don't necessarily serve I mean, obviously, I serve because I love my country. But I serve because I really love working with soldiers, mentoring soldiers, leading soldiers. And I was like, this is all over now. So now what am I going to do? Because this has sort of been who I am and what I've done. In a nutshell that that is what it is. That said, I can't say that I wouldn't if my if my son is diagnosed with Type One Diabetes, I'm going to have a longer than 15 minute pity party, for sure. I can empathize with you. 100%. I think for me, it was just like, hey, let's just get on with it. Let's own this as much as we can.
Stacey Simms 13:02
That'd be just be the perspective of a parent versus family
Jason Cyr 13:05
Yeah. It's very different than me. Yeah. But yeah, I don't even Oh, gosh, I can't even imagine. I mean, I think it's difficult day to day. And I'm one of these people who probably there couldn't be a better person to get it. In my own opinion, because I'm just one of those people who constantly looks at my Dexcom. I'm constantly, you know, weighing what I shouldn't shouldn't put in my body. You know, how hard should I go? I'm constantly thinking about the dosages of insulin I'm taking. So I don't think it would be there's a better person to get it. But yeah, I mean, that's generally what went through my mind.
Stacey Simms 13:37
When you went back when you were clear to go back into what you were doing. I'm curious, what was your routine at the time? Because we're talking about what, seven or eight years ago you mentioned Dexcom? Did you have that then I think I read you were checking your blood sugar like 20 times a day at one point, you know, take us through the routine of that initial first year back in the service.
Right back to Jason answering that question. 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. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy you pull off the red cap and push the yellow end onto bear skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo joke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to my conversation with Jason. He is talking about what it was like when he first went back into the army after being diagnosed.
Jason Cyr 14:58
I didn't have a CGM Immediately, and obviously, they didn't put me on a pump either. So I was, you know, manually doing this stuff, I was actually buying extra strips, you know, because I was testing like 15 or 20 times a day. And so the prescription that I had wouldn't, wasn't lasting that, you know, as long as it normally would. But part of the reason I was doing that is because I was also trying to figure out how to get back to racing at at least the highest level I could do. And at the time, I did have a USAC, or United States cycling Association, or USA cycling pro license. And so you know, as a pro, I was pretty mid pack fodder. But definitely fast enough that I was, you know, winning expert level races at Nationals, or at least getting on the podium. So I wanted to at least see if I could get back to that. And the way to do that, as far as I was concerned, is just collect data. And so my, my wife, who is a scientist helped me build this really wild looking Excel spreadsheet that had like linear regression on it. And I was just plotting points and figuring out, okay, if I go for 20 minutes at max effort, anaerobically, what happens to my blood sugar, and then if I go 40 minutes, what happens? And if I feed at 45 minutes, you know, what happens after that. And so I just was, I guess, in the course of training six days a week, I was just trying to figure out what happens, you know, if I have this much, you know, slow acting insulin on board, you know, what happens with that race effort. And then what happens if I have, you know, from working out or in a periodized stage, where I'm doing like six days of really hard training, and then taking a break? Is the insulin a lot more sensitive.
And, you know, I found out obviously, that it was, so just things like that I was just trying to figure it out. my saving grace really was that my wife, unbeknownst to me, wrote a letter to Phil Sutherland that at the time team type one, and he immediately invited me at the time I think we were Sanofi or Sena Fie team type one. So I was on that team, I think, for a year. And then I got on to the team Novo Nordisk elite team. And just being around type one athletes at training camp in Spain, or in California, we did, we did quite a few training camps over the, I think, five years I was with that team. That was a huge help, because it was just a depth and breadth of knowledge and institutional knowledge that I just didn't have. I didn't know any other type one, athletes, I just started asking those guys questions. And then I also had unfettered access to a an endocrinologist, who's who was on the team, and I just started firing off questions and trying to figure it out. And so the trajectory that I had for learning how to race and deal with diabetes and still maintain a 12, or 14 hour week training schedule was great. And I couldn't have done it. Or I mean, I could have done it, but it would have taken I take a lot longer to figure out those variables. So I think having access to those guys was just great.
Stacey Simms 17:55
When you got your Dexcom, having been someone who already kept their own spreadsheet, and pretty detailed ones, I'm curious what you've done with your data, I famously on the show, have the perspective of my son and I, we're really not big data, diabetes, people we are go by feel, you know, we do great, it's all good. But I love respect and marvel at people like you who really dial into it. So with that being said, when you got the Dexcom, and you opened up clarity, or you looked at these things, what was that like for you?
Jason Cyr 18:29
Oh, it was huge. It's even better now with the six. I mean, I started off with before, you know, went through the five transition to the six. And the six is just like it's almost overwhelming the data that that? Well, it is overwhelming, but it's just great. It's also really great to see the the amount of stuff that's available to you. And so yeah, I use the data all the time. It's great. When I'm racing, we just, we didn't have much of a race season this year. But I think I did five races, and three of them were enduro racing, which is the it's a mountain biking discipline that I focus on. And those races can last for four to six hours, seven hours, you're only racing stages. But you're you're riding from the end of a stage all the way back up the mountain to another stage to race back downhill with these chips on your bike where they they're collecting time. And so seeing the trends, whether it's going up or down or it's really good to see it helps immensely. And then I also look at that data after the race to see it because that racing discipline is very anaerobic and going full gas for the three this to seven minutes or eight minutes that the stage lasts. When you finish because your anaerobic, you know you're you're dumping glycogen in your blood, you're getting these huge spikes that you know your body has to test to deal with later on. And so knowing exactly how much insulin to take, after, say two stages and maintain a good blood glucose level is really important. And obviously you couldn't do that with just by finger sticks, trying to figure it out. So it just Yeah, the data that I get from that informs my decisions and racing, especially over a long day, or days leading up to it, I couldn't do without it. So I think the CGM is really important.
Stacey Simms 20:12
I must have sounded ridiculous to you, I promise we don't just wing it with my son,
Unknown Speaker 20:16
Jason Cyr 20:19
also get that I am a total geek. I mean, that's I think there's reasons to push me to cycling coaching, because I just love looking at heart rate data and power data and overlaying these things and figuring out the puzzle of how we make someone stronger and faster.
Stacey Simms 20:33
Yeah. And I'll tell you what podcast listeners are my listeners are super data people, which I feel bad sometimes that I'm their host, because people that listen to podcasts in general want more and more and more information. So sometimes I'm like, sorry, but you know, we do the best we can, and want to go back if I could, to some military questions. Because there are so many young people who were diagnosed with type one who unfortunately, cannot serve in the military. This has been their dream. And curious what your perspective is, do you think that will change? I know that there's they're looking at it. I mean, there was a study a year or two ago that they were doing at Fort Bragg, with people with type one trying to kind of see how more modern diabetes technology might help. What's your perspective on that?
Jason Cyr 21:16
Yeah, I think, and obviously, I'm not a physician, or a doctor in any way, or probably an expert, I'm probably an expert on my body and how it reacts, I think that maybe technology could fix the problem. That said, I make silly decisions. When I'm hypoglycemic, and soda, I think, to put a combat leader in a position where they have to make life and death decisions. And there's potential that you could be hypoglycemic in the moment, obviously, is detrimental. And that's just on face value. And I haven't looked at how the technology could change it. But I will say that it has made me much more aware of highs and lows just because of the alarms that are associated with a continuous glucose monitor. So yeah, I think it's possible. Yeah, for sure. But I would let you know, the experts make those decisions that said, I can empathize with someone who just really wants to be have a career in the military, because it's made me who I am. I mean, it does. Obviously, my military service doesn't define me as a person, but it is a huge part of my life. There's very few moments I will say that I did not enjoy in my 23 plus year career in the military. So yeah, I hope that we get to the point where that's technology fixes that or perhaps there's a cure someday, I certainly wouldn't enjoy that. Because I tell you what, the first thing I'm gonna do is eat a whole cheesecake.
Stacey Simms 22:39
When you return to the military, if your diagnosis what you do, what was your job? What were your duties? Um, I
Jason Cyr 22:45
think what was my first my, I think I was the, the Operations Officer for this critical infrastructure protection Battalion, which we started, we use a lot of 18 series, guys. 18 series guys are special forces, guys. And we modeled that program off of what the defense Threat Reduction agency does. And they typically use a, or at least in the past to have I'm not sure what they do now. They use a soft guy like a Seal or a Green Beret to do the targeting piece when we look at how we would defeat or take down like, say, a facility. And so I was I think I was an operations officer. And then I moved to the executive officer, the deputy commander of the that critical infrastructure protection Battalion, and I spent the rest of my career there, basically, because I was working for these two officers that wrote letters recommendation that keep me in the military and so that I finished my career out there. And you know, probably one of the reasons I did retire is I was never going to go and command a combat unit ever again. That was not going to happen. You know, I wanted to be obviously I joined the Ranger Regiment and then spent time as a special forces guys starting as an 18. Charlie, which is a special forces engineer. You know, I did those things because that's what I wanted to do.
Stacey Simms 23:55
You mentioned that now you're coaching your coaching other cyclists? Yeah, correct. How so? How is that going? And I'm struggling to think of how to ask this because you started doing that during this pandemic.
Jason Cyr 24:06
They I did and I have to say it's been it's been incredibly successful. The company is cycle strategies. We coach road cyclists, cyclocross, but we focus on you know, the mountain bike discipline, so enduro, downhill, cross country, mountain biking, and I thought, hey, because we're in the middle of a pandemic, this will give me some time to get my feet on the ground, figure out the business aspects, you know, subs, figure out the books, figure out how we're going to deliver the coaching process, and it's been busier than I ever thought maybe that's that is because of, of this. In the process of coaching. Most of it is online, I use an online platform called training peaks to coach my athletes, and I do do the other side of the business is the skills piece. And so I do do skills training with adults and kids, but we're wearing masks. I don't touch it. You know, we don't there's no contact. We just I'm really trying to do our best to stay six feet away in cycling is sort of a socially distance thing anyway. So
Stacey Simms 25:06
it's been amazing though, because cycling has been so popular. I mean, it's been more and more popular every year. But during the pandemic, we tried to get my son's bike repaired. And it was unbelievable. how busy everybody is there at a party. You know, everybody wants to bike ride right now.
Jason Cyr 25:21
Yeah, yeah, I know, our local bike shop has had a really difficult time, trying to come up with way logistically to come up with ways to find parts for folks and just keep the item. Yeah, so it's been great for the sport. I think it's Yeah, it's helped me with a few clients that have just decided, Hey, I'm going to take up cycling, I really enjoy this. Oh, I think I need a coach. And I'm getting an email. And yeah, it's, it's, it's been great. I love it.
Stacey Simms 25:46
What is your advice for people with type one who are reluctant to get active? Because it is a lot of work? And frankly, even with all the technology, there is still some fear, right? It's hard to do a two hour bike ride without going low. If you haven't done that already.
Jason Cyr 26:03
Yeah, my recommendation is, well, first off, I just think living a healthy lifestyle helps you control your blood sugar, much better. And isn't that the intent, obviously, we don't have a pancreas that functions, at least that part of the pancreas doesn't function properly, to provide insulin and the glucose back in the cells. And so exercising helps you a treat some of that out of your system to help to put it back in. It makes you more responsive to insulin. And again, I will full disclosure here, I'm not a physician at all. I'm not an endocrinologist. But that has been my experience. So yeah, that's the first point is it really helps me at least control my blood sugar by just exercising and being consistent about it. Second, it's, it's just a healthy thing to do. And the third thing I would add is that taking it slow. So you may start with 15 minutes of writing and see how your body responds to that. And then add another 15 minutes until you get to an hour something that would be my recommendation. And I just feel like it's a great way to live. Anytime I'm sedentary, I am now chasing numbers. But if I just stay active, generally active and I'm not saying I go out and you don't have to go out and train for two or three hours every day. That's nice. And I know folks that do do that. But I don't do that. I may go for a couple hour ride to three times a week. Otherwise, I'm just doing an hour and maybe a little bit of weightlifting or something in nowadays in the garage.
Stacey Simms 27:27
What do you still like after all this time about riding your bike about cycling?
Jason Cyr 27:32
Oh, yeah, that's a great question. I don't know I'm sure my wife would have. She would say I'm obsessed. I don't know. All things. two wheels. We have dirt bikes. We've got cyclocross bikes. I even got a unicycle this year, as a way to figure out how to work on some balance. I don't know I think for me, cycling creates an experience where I can think about the day I can decompress. I've always used cycling when I was in the military, especially command to decompress. So I would come home, I get on my bike for an hour, and I go just smash out some laps, and really get my heart rate up high a few times, do some intervals. And I would be completely decompress to come home and have dinner with the family and being a good husband and a good father. So for me, I think it's just a bit of an escape, perhaps the endorphins that are released in the process of of executing some physical activity. I'm not sure but I do know that I do a lot of thinking. When I'm while I'm writing,
Stacey Simms 28:27
how's the unicycling going?
Jason Cyr 28:29
Good. I took it took me a solid hour of falling before I figured it out. I put knee pads on and shin pads is pretty funny. The helmet everything. And I just went out there. I just started getting after it. But now I can ride all the way around town on it. Wow. Sure, my neighbors thought that I was
Stacey Simms 28:48
gonna say does anybody stop you? Or take Oh, yes.
Jason Cyr 28:50
Well, interesting enough. My neighbor lives right across the street. He's a really cool guy. He's probably in his maybe mid 50s or something like that here. This is all Jason Let me try that thing. And as I said, God, be careful this thing you'll get hurt. And he jumped right on it and wrote it right down the road massive. Oh, look at that. That's awesome. And he knew, you know, he, he had spent his his youth riding in them. But I didn't know that. So I thought it was great. I was amazed. That's awesome. That's fine.
Stacey Simms 29:16
Yeah, you just cycling isn't the kind of thing that you just jump on and go, that's somebody who had a little bit of experience?
Jason Cyr 29:21
No. And I've got a few kids that I coach, and they all ride unicycles. So I said, Well, hey, you know, if they're gonna do it, I've got to figure this out. So every time in between, like after races or before races, they're just riding around on the unicycle. And I have to say, what it really engages your core. I thought that was really cool. And then the second piece that you get out is this great building of motor skills, and motor schemata or proprioception that you're kind of building and so the balance that comes from that is great for cycling, especially the offer of disciplines.
Stacey Simms 29:52
So listen, I went all over the place. Was there anything you want to talk about that I didn't mention?
Jason Cyr 29:56
No, I would I would add that, you know, thank you so much for letting me You know, I guess, Share, share my story. I don't think it's remarkable. I'm flattered that you think it is. The last thing I would add is that service and the military and service to your country is one, it is just a great privilege to lead and serve one serve, but to lead and be given the great responsibility to lead men and women, I think is just it's a privilege, really, and I wouldn't have done anything else had I had a had an opportunity. I just I've really enjoyed my service to the military and just serve with all those people. Obviously, there's ups and downs. You know, I've lost friends along the way, you know, in Afghanistan and deployments, and just other places, training accidents, those kinds of things. But it's just been a great opportunity. And, and I enjoyed every bit of it.
Stacey Simms 30:42
Well, we can't say thank you enough for your service, and how much we appreciate everything that you've done. And thank you so much for coming on and sharing your story. And if you don't mind me asking, I would love to have a unicycle picture. Oh, sure. Next time you're on.
Jason Cyr 30:56
Absolutely. I've got your your number. I'll text you one.
Unknown Speaker 30:59
That'd be great. Thanks
Unknown Speaker 31:00
so much for joining me.
Jason Cyr 31:01
Thank you, Stacey. Thanks very much.
Unknown Speaker 31:09
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:14
More information about Jason's story, he was written up quite a bit for bike riding with the Novo Nordisk folks, as he mentioned, I mentioned that unicycle shot, I will put that in the Facebook group as well. Many of you who gosh years ago used to follow my blog may recall that my kids elementary school had a jump rope club. And stay with me, there's a point here, the jump rope club was featured, we put them into the Big Blue test two years ago, which was a wonderful effort from the diabetes hands foundation to get people to exercise and check blood sugar. And it was a really great outreach efforts. So the jumper club was featured in that. But another elementary school where a lot of my friends kids went, had a unicycle club. And that always blew my mind. Because, first of all, who had the idea to start the unicycle club, and it was very popular, and they did just as much with those unicycles as my kids did with the jump ropes we had, like 40 kids, fourth and fifth graders zipping around on unicycles. It was bonkers, but good for you. Cornelius Elementary School in North Carolina, we salute you. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. Yeah, there were two years almost, I think we used it before share. Trust me when I say using share and follow apps has made a big difference. Then he and I now set parameters about when I'm going to call him or text him you know how long to wait, that kind of stuff. But it really helps us talk and worry about diabetes less. You know, if he's away on a trip or at a sleep over, it gives me peace of mind. It also helps I love this if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on loads before there were a big issue. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
And tell me something good this week Happy Anniversary diaversary. Happy 10 years to the college diabetes network. I can't believe this organization is 10 years old. We have been following their progress from the beginning. The college diabetes network started when Christina Roth basically started a campus group by herself wanting peer support on college campuses. And then she expanded into a national nonprofit which only served the young adults it really was geared towards college kids. But as it grew, and Christina saw the need, it continued to expand and now includes information for high school students, college students, young professionals and people like me, parents and family who are trying to stay informed, stay calm, learn more about sending their students, their kids with T Wendy off to college. So congratulations to the college diabetes network with more than 224 chapters now on campuses across the country. They are just doing an incredible job. They have a bunch of celebrations going on this month. And Benny is he's a sophomore in high school. I'm trying not to get too far ahead of myself. I have learned with all these years with type one, you know, in my family, that while it's good to be prepared and think you know what's coming, you really don't know what each stage is going to bring with your child because every kid is different. So I've stayed away from college type one stuff as much as I can until we get just a little bit closer. another bit of good news this month. The diabetes psychologist podcast has launched and this is with Dr. Mark Heyman and I spoke to him earlier this year. And then kind of off the year we talked about his podcast and I'm thrilled that he took the dive It has done this, I will link it up in the show notes. There's just not enough in terms of resources right when it comes to mental health and diabetes. So kudos to him for launching this. He has launched it as a limited series. He has a bunch of episodes out, and we shall see if he continues, but I'm thrilled that he put these important episodes and good help out there.
And this last one isn't really a concrete Tell me something good, but it's just something I love. You know, every year, there are diabetes challenges on Instagram and Facebook, you know, social media stuff, I'm sure there's stuff happening on tik tok and snapchat that I will never say, but it's all about, you know, post every day, and they give you something to post. And if you're interested, I mean, we're almost halfway through the month. But there's still a long way to go. I'll link up a couple in the show notes. And I'm sure you've seen them on Instagram, but I, I love these. I don't participate anymore, because I have a lot of other stuff going on. And you know, it's Benny's type one. I mean, it's really not something I can take pictures of all day long anymore. I'm not taking care of him in the same way. But I love to see these posts. I don't care if you're posting twice in a month or every single day, your posts are seen. They matter. And they make me smile. They're not all happy posts. Certainly they're all good news posts. That's not what diabetes is all about. But it really is heartening to remember that this community is still the DRC it's the diabetes online community, and your voice matters, your pictures matter. So thanks for letting me take part a little bit in what's going on in your diabetes life. That way, if you haven't told me something good story, you can always reach out Stacy at Diabetes connections.com. And I regularly asked for submissions in the Facebook group, Diabetes Connections group.
A couple of reminders of things I've been telling you about in past episode First, the contests are going on right now I've got two contests this month, one on Instagram one on Facebook. So the Facebook one is only in the group. It's in our podcast group. But the Instagram one is on the Stacey Simms account, it's the only account I have over there. So definitely check those out. Again, links in the show notes, any app you're listening to will have the show notes. So you can always go back to Diabetes connections.com. And the second thing I want to make sure you know about is the ebook, Diabetes Connections extra. I'm giving this away for free. Yes, you do have to sign up for my newsletter. And if you already signed up for the newsletter, you can still sign up and get the book you will not get double the newsletter. Although, you know, would you really mind hearing from me more than once I know. But definitely sign up and get that ebook. I think it's really good for newer diagnosed families, for people who have maybe just started a CGM who have never really figured out what ketones are. And I think for veteran families, and really well educated people, let's face it, like yourself, probably who listened to this podcast every week. It's fantastic to give to the other people in your life, who may not really understand diabetes, because Diabetes Connections extra is full of conversations about the basic building blocks of diabetes management. And some people just learn better when they read a book, rather than sitting down with a grandma, or sitting down with your best friend who's interested and kind of explaining. And that's what I think it's really going to be good for. But
you tell me I'm interested to see what the reaction is to this. That is Diabetes Connections extra and we are giving it away for free, it will not be free forever. I'm going to put it on Amazon as an E book in a couple of weeks. Okay, thank you so much to my editor John Bukenas from audio editing solutions. And thank you so much for listening. It means the world to me that you're here week after week. I appreciate it so much. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 38:38
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
JDRF began this year by funding more research projects than ever before, but after COVID changed everything, what does the future hold? We caught up with CEO Aaron Kowalski to ask what their mission to "cure, prevent & treat" type 1 diabetes look like in a time when fund raising is down and the future is unclear.
In Tell Me Something Good find out about two contests Stacey is running. One in our FB group (see link below) and the other over on Instagram.
We're celebrating 1,000,000 downloads!! Get your free Ebook "Diabetes Connections Extras" full of expert advice for managing insulin-dependent diabetes. Terrific for newly diagnosed families or caregivers and friends who want to learn more.
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 (rough transcript - check back for edited version)
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 Hypo Pen, 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 0:28
This week, catching up with JDRF’s CEO to talk about what this year has been like, and what it all means for their mission and research going forward. I also asked if he felt it was a good decision to keep those fundraising emails going during a pandemic.
Aaron Kowalski 0:44
But the decision to continue to ask people to support us was not to have people feel pressured that they were struggling, but for the folks who could who had the financial capabilities to lean in and help us preserve some of the incredible mission momentum we have.
Stacey Simms 1:00
Aaron Kowalski is the first CEO of JDRF to actually live with Type One Diabetes. We talked about a wide range of topics.
Tell me something good a big milestone to share with you and of course, it is diabetes awareness month we've got contests to talk about. 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 so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host, Stacey Simms, and my son was diagnosed almost 14 years ago, his diversary is in early December. He's a sophomore in high school now he was diagnosed as a toddler, my husband lives with type two diabetes, I do not have diabetes. But I have a background in broadcasting local radio and television news. And that is how you get the podcast.
It is of course diabetes Awareness Month, every year in the month of November. And we say that this is more for people outside the community, right, it's our chance to educate them about diabetes, because every day is diabetes Awareness Month once you have a type of diabetes, so I'm not going to do too many different things on the show for this month. But I have some efforts going to educate people outside of the usual suspects around here. I'm also going to be running two contests, I'm going to share all that information. After the interview one contest on Instagram one on Facebook, if you follow me, you will see them if you don't more information coming up.
I also want to let you know that I have released an Ebook. This is something I've been working on for quite a while. It has selected transcripts from the podcast, but it is in a beautiful, easy to read form. And the theme of the book is a comprehensive look at some of the questions that we all get asked over and over again. So I'm going to put a link in the show notes. It is free. Yeah, yes, sign up for my newsletter. If you've already signed up for the newsletter, if you already get it every week, you can sign up again, I promise you won't get to. But you will get the free ebook. If you remember we've been doing these Diabetes Connections extra episodes, where I put out an excerpt and then the much longer episode a couple of days after. That's where these transcriptions come from. So it's all about CGM, all about insulin all about ketones all about blood sugar lows, basic stuff that I think is really good if you're newer diagnosed, if you're looking for a refresher, or if you want to share with a caregiver or a loved one who wants to learn more, but might learn better from an ebook, you know, on their Kindle than from a conversation with you. We all know people like that. So I hope you share it. I hope you like it. Again, it is free. You do have to sign up for the newsletter, more information in the Facebook group and in the show notes Just go to Diabetes connections.com and you will see it linked up right in this episode.
Okay JDRF CEO coming up in just a moment, but first Diabetes Connections is brought to you by One Drop. And you know, when I spoke to people at One Drop, I was really impressed at how much they get diabetes. And it makes a lot of sense because 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 One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is Aaron Kowalski. He has been the CEO of JDRF since the spring of 2019. Of course this has been a challenging year for everybody to say the least. And when the crisis first started, I think we all knew that nonprofits were going to take a big hit. As you will hear in the interview. I sent to Aaron and email with my reservations look I'm a supporter of JDRF, financially, and I've been on the local board. And I felt that fundraising as usual would be a mistake. I advocated for a fund that would help people who we knew were going to lose their jobs and would need immediate help. But I am not inside JDRF. I haven't been on any board with them for about eight years, maybe maybe a little bit more. But I thought it would be helpful to have some background of my opinion, and where I stand at the start of this interview. But I also wanted to let Aaron give a research update at a sort of a state of the state. So there's a lot going on here. But I was really thrilled to he came on and was so upfront, really answered my questions and gave us a lot of information. Aaron, thanks so much for spending some time with me and my listeners. I appreciate it's good to talk to you again.
Hey, Stacey, thanks for having me on.
Stacey Simms 5:48
I'm not exactly sure how to jump in. I feel like everything I say about this year has become a cliche, but I'll barrel through it in that this is a year like nothing we've seen before. Can you give us a little bit of a kind of a state of the state of JDRF as we sit here in November of 2020?
Sure. I think like everybody, the the the last number of months have been very difficult. And certainly it's been for JDRF. I wish I could say a few things. One is pre COVID. I had a meeting and this goes back into early March with our board of directors and I, I told them that this was an unprecedented time for research progress, and amazing advancements happening on all fronts of diabetes research. And I'm sure we'll talk about those. And then of course, as we all know, COVID ahead, and fast forward to November. And I guess what I would say is just that I've had to make some changes, we reduced our staff somewhat significantly, we have a number of chapters we have from over 60 to 29. But the intention, the mission hasn't changed at all. And all of these changes, were focused upon making sure that we could continue to maintain the momentum we saw and research and development of life changing breakthroughs to help people to one day security one day preventing one day better treating one day, and that's what we're focused upon is maintaining research and mission momentum. We're not going to abandon any part of the United States. In fact, we hope to engage with more people. It's really just about how do we structure JDRF most efficiently in the face of not being able to get together for walks and galleries and the different fundraising events we do. So I'm an optimist by nature. So I'm optimistic that we have a lot of challenges in front of us with COVID. Still, but Gosh, when we do talk about research progress, you'll hear that there's so much excitement happening right now. And we we're doing everything we can to keep that going.
Stacey Simms 7:52
Well, let's just jump in and talk about it now tell us some of the research projects that are ongoing, that has not been affected by COVID. And in fundraising and things like that.
Yeah, I think the good news is research has progressed, even in the face of COVID. We we've monitored this, we fund research in the United States, of course, but we also fund research in 20 other countries, and depending on the country, depending on the lab, the state, we are seeing research be done. It's not perfect. It's not 100%. It's not pre COVID levels, but it's still good. And you know the way our mission accelerating life changing breakthroughs, to cure prevent better to to end on each of these fronts, we're seeing incredible progress. Of course, many of you know that I worked on artificial pancreas for a long time. My brother and I are using a control IQ systems, we looped for a long time, you look at control IQ, which was amazing FDA approval, which spun out of research that we funded with the team at UVA, the 770 G, and I'm proud to have funded some of the work that went into the hybrid cluster, but Medtronic, the Insulet system that's coming down the pike is some of the work we funded at UC Santa Barbara and now at Harvard. So you know, the devices, these better treatment options. You and I have talked about this. I mean, it's a pretty life changing. And um, I literally almost took a picture of my blood sugar this morning, because I was like, gosh, I never could have done that before. Yeah, and here I am, you know, cruising at 100 for seven straight hours overnight. Yeah,
Stacey Simms 9:26
as I've mentioned, I have a teenage son who were supposed to be in the throes of the worst years of type one and instead he has the best time and range, the lowest agency and the least amount of work he's ever done. And it's it's just amazing to me.
It's it's something I'm really really proud of and but some of your listeners might know that my brother has severe hypoglycemia problems. It was and started with diabetes when there was urine testing. And here we are now living a totally different life. And that is Yeah, of course, the JDRF was founded to cure to one date. And that's our number. That's our North Star. That's that's our number one goal. But in the meantime, I often said particularly back in the beginning of that project, when there was some controversy, if we should do it, we need to be healthy when there are cures. So the advancements that are happening on devices are awesome. And if we continue to push on that front, you may know that we have a big project with Tidepool bringing loop the DIY solution, through FDA in a Tidepool loop form, which will allow for a plug and play of sensors and algorithms and pumps, I'm really excited about that we have some projects and better infusion sets and faster insulin. So on the treatment side of the equation, JDRF is still focused there. What I would say though, is in the face of COVID, we realized that I don't want to say our work is through because we will continue to focus there. But there are a bunch of companies out there Medtronic Tandem Insulet, you name a title. So big foot, we realize that we can start to pass the baton, we have started to pass the baton on, on that work, and we're super excited is really on the work on preventing and curing to end to end cures. And we're gonna talk about why I pluralize that, because that's where the incredible action and it actually reminds me of the early days of the artificial pancreas project when people said, Oh, you've been hearing this forever. I've been hearing about an artificial pancreas for 35 years, you know, what's different now. And it was different. The science had moved the the the tech technologies had moved. And here we are now using hybrid closed loops. I see cell therapies and preventative therapies as being in a similar place. And I think the next coming years are going to be transformative on those fields.
Stacey Simms 11:52
All right, take us through a couple of those projects, if you could, because I'm with you. That sounds exciting.
Yeah. Okay, so the first thing I'll start with cures, we always say we're gonna find a cure. And I think when I talk about this, there is a skepticism because people have been, you know, there's always I was promised five years or 10 years. And why was that? And so I get into often when I when I talk and you know, I'm sure your listeners will have similar questions is, when, if you step back in time, and think about the JDRF in the 90s, the decade of a cure is what they called it. Why did they say that? And the reason was, the people were being cured, and they were being cured through islet transplantation. So many of your listeners have heard of islet transplantation, somebody dies, they donate organs, one of the organs of pancreas, people can now harvest cells out of the pancreas and transplant them into people via an injection, and it actually restores normal blood sugars. You've probably heard of the Edmonton protocol, Dr. James Shapiro JDRF, worked for a whip and continues for decades. If you meet somebody who's had an islet transplantation, they will tell you they are cured. They're a one sees completely normalized. They don't take insulin, they don't test they can eat, you know, food and don't have high blood sugars. The downside is they take chronic immunosuppressants, and it requires an organ which is a supply demand issue. We know any organ donation is either always big lists. So you know that this idea of I was promised something that wasn't real is not exactly accurate. We could cure people and in fact, I was with Dr. Shapiro last year, he has people who have been off insulin for 20 years with an islet transplant. So that shows that it's possible.
Stacey Simms 13:52
Right back to Aaron. He'll finish that thought in just a moment. But first diabetes Connections is brought to you by Gvoke Hypo Pen and almost everybody who takes insulin has experienced a low blood sugar and that can be scary, but a very low blood sugar is really scary. And that's where Gvoke hypo pen comes in. gvoke is the first auto injector to treat very low blood sugar. Gvoke Hypo Pen is pre mixed and ready to go with a new visible needle. That means it's easy to use. How easy is it you pull off the red cap, 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 comm slash risk. Now back to Aaron Kowalski talking about pure research.
And the reason I say cures is very similar to the you know the artificial pancreas work we did back in the day. I published a paper in I think 2008 and I said there is no single artificial pancreas. There are going to be a series of different solutions. Pump turns off insulin pump the proactively turns off insulin pump that lops off highs and lows, etc, and so forth and getting more and more sophisticated. And we call that the JDRF roadmap. Similarly, there's not going to be a single cure to type one, they're going to be multiple approaches. And that's where there's huge excitement because if you look at for example, there are multiple groups moving into human clinical trials of what I would call modern islet transplantation. Modern islet transplantation means enough cells for everybody, because now we're using stem cell derived eyelets, instead of what we would call calavera. Guy let somebody who passed away and donated their pancreas for so now via stem cell derived islets, you have an unlimited supply source. And it's not just one group that has an unlimited supply source. We have Harvard, Novo Nordisk University of British Columbia via sight, UCSF University of Sydney, there are multiple groups that can make stem cells into eyelids, that looks just like eyelids that came out of our person and can cure animals. So huge, huge advance. The other side of the equation is even a suppression. We have multiple approaches that are going to obviate the need for immunosuppressants. So this isn't getting real. I mean, this is violence and human clinical trials and seeing stem cell derived islet insulin production, these cells that are grown up in test tubes and petri dishes, transplanted into people now starting to make insulin. I was
Stacey Simms 16:33
just gonna ask those different groups that you mentioned, my first question was going to be what about human trials? So via sites in those are the other ones you mentioned moving in the next couple of years to human trials as well? Yeah.
Oh, yeah. I very much anticipate other companies being in human trials in 2021. Wow. And that is awesome. Because, again, if you think about the process, and you know, why was I promised five years? Well, the process for a small group of selected people worked. But the process for a big group of people wasn't ready for primetime. And we needed different approaches, we needed stem cells, we needed immuno protectants. And now here we are in 2020. It's a, you know, there's been a lot of science since 2000. And we're going to see human trials now happening more and more.
Stacey Simms 17:23
We're going to talk about kind of today, and fundraising issues and some criticism in just a moment. But I also want to address I'd love for you to talk as well, and you already mentioned this prevention, because when I hear about to come up, and I'm very excited that I now know how to pronounce it. You know, that's one study that seems to be ongoing, doesn't even finished yet, is it?
Well, there but you know, again, there are a number of these trials often happen in different stages and a patient population. So there, they've done some trials that have been very promising and they're ramping up and doing next gen trials.
Stacey Simms 17:57
Are there other prevention studies funded by JDRF, other than the one that I'm referring to, which is part of trial net, you know, Dennett USS,
oh, yeah, we are working across the board. I mean, we have a number of different groups that are using different drugs that slow the progression of type 1 diabetes. You may have heard of Verapamil, which is actually a beta solid agent. ATG Novo Nordisk was a big program, the preventing to end and it's interesting when I talked to the community about this, sometimes, people bristle a little bit and they're like, well, what's prevention gonna do for me, preventing to end in caring to end are interlinked? No cell therapies are one way I mentioned cures. So there are there going to be multiple ways. Ultimately, what we want to do is get beta cell functioning, they are our own beta cells going again. And to do that, you have to restore immune balance. So what when you talk about sip lism AB, which is an immunotherapy JDRF, funded way back to the original Studies at the University of Chicago. Now legendary scientists, Dr. Jeff bluestone and Dr. Kevin Herold, that drug is now owned by a company called prevention. And they're going to for FDA approval in the current data delays type one for at least three years, and probably we'll see even longer in a number of people. So we're looking at Temple lism ab, we're looking at a variety of different approaches. And I just really want to convey to the listeners that one, even if you have full blown type 1 diabetes, like my brother, I mean, this these advancements are hugely important for future cures for TMD because he can't share to you one day, you know, aside from an immuno protected stem cell, but if you want to do it, quote unquote, true qR lights, you know, you restore your body to what it used to be, you need to restore immune balance, and that's what these drugs are aiming to do. The other part that I think is really important to remember is Type One Diabetes is a genetic disease. You know, most people don't Understand that, unfortunately, that the risk for my kids is 15 times the general population, the next generation of people in our families, we need to stop this disease. And that's, that's the reason. So it's curing to one day, it's preventing the actually going,
Stacey Simms 20:18
there are gonna be people listening who say a genetic disease. We never had any type one in my family until my child was diagnosed until I was diagnosed. But it is obviously a very strong component, right?
Yes. So I the way I describe and answer that question, because it comes up, every single talk that I give, is just through math, the general population have about a four in 1000 chance of getting type 1 diabetes point 4% will get to end in the US, my kids have about a 5% chance of getting to five and 100 versus four and 1000. Now one of my good friends, Dr. Corey hood at Stanford, who's a psychologist, he says, Aaron, he's got to convey that the risk is that odds are 95% of its won't get it, even if you have a genetic risk, which is a glass half full, right and true. But just play that out from a Why didn't I have it in my family? So if five and 100, get it, you can say okay, insulin has been around for 100 years before that every single type one person died. So in your family, how many people are there in your first you know, your immediate family? And how many generations are there, you can just count, you know, so just say there are three kids and each generation, he may have like 12, nine to 12 kids. So if you see what I'm going here is the odds are even if you don't have the genetics, if you have the genetics, fortunately, most of the kids won't get it. But that's, you know, cold comfort to the ones who do like my brother, I was second. So I guess debate. And if you went back further, if we had through ability to look back in time and say, good kids die, pre 1921. In your family tree? The answer is almost certainly Yes. The kids died, because they didn't have the insulin to survive. So you know, five and 100, if you're a male with type one, three, and 100, if you're a female with type one for your kids, is, is elevated. And unfortunately, we're seeing the incidence of type one increasing for reasons we don't understand. So that's the simple kind of walking through the math that hopefully that makes sense. Because even if you don't have a family history, you probably do have a family history, you just don't know about it.
Stacey Simms 22:41
I'm gonna move on to some closing questions unless you want to focus anymore on research, or was there anything you wanted to mention?
Yeah, I think the only other piece that we didn't talk about is I mentioned Cori hood, and psycho social, you know, and this is really wasn't related to COVID, before COVID. But we're certainly seeing more challenges with the emotional side have to end. And I think a lot of people don't appreciate that JDRF is now as part of our program focused on psychosocial aspects of diabetes. Now, this is kind of the unspoken part of the disease that affects everybody. And and I just want to put it out there that after years of not funding research in these important areas, and my very strong opinion, we are, and we're funding fellowship to train up a number of new psychologists who specialize in issues, their take on specific funding research programs for kids and people who are really, really struggling with significantly higher one season decays, depression. That's one area that people don't often talk about. But I think every family goes through low points and some very, very low points. And that, put it out there that we're working and see this is an area that needs more attention. I think
Stacey Simms 23:56
that's great. You mentioned COVID, which is actually why we've been talking this whole time about it. Can I ask you a couple of COVID questions that we get all the time, you know, at the beginning of this year? There were so many worries about type one, there wasn't a lot of information that separated from type two, there's been a little bit more as the year has gone on. Can you talk a little bit about what you've learned about COVID? and type 1 diabetes? Is there new research information to say what it seems to have said to me from what I've seen is people with type one are not any more likely to get COVID. But of course, any illness will mess with your blood sugars, but it doesn't seem to be as severe as people with type two.
Yeah, that's the data. The challenge for us here in the us is we can't collect data as well as many other countries because many other countries can collect from every one of the citizens in the country and and then analyze it whereas our healthcare system doesn't work that way. So when we gather information, like you just described, it's often coming for example, that was there's a big study in England. Look at this. We've worked through a lot of the Scandinavian data. Australia. I think you're that what we're what I would say right now is we do think that people are type one have the same risk of getting COVID as anybody else, it's not increased. The big question, there's probably plenty that people with type one are probably at higher risk for worse outcomes. Type two people seem to be more and that may have to do with the increased weight and type two people. But again, the via more information, I think the big question on why would somebody with type one do worse and you brought up one of the potential issues is just blood sugar, we know that when when you're sick, your blood sugar is harder to manage. The treatments can exacerbate if you're on steroids, bad blood sugar, and that can contribute to infection problems. And particularly in COVID, I was literally on the phone with a person in the field yesterday, you know, one of the hypotheses is people would take one over time get vascular issues, we took on a higher degree of risk for heart attacks and strokes. And there's a fair amount of discussion about covid being you know, the impact on the back skillet. Sure. And that would then be exacerbated by P one d. So, you know, it's obviously for everybody. It's scary. It's scary. For me, it's scary for my brother and my family and my wife. And we urge people to be be extra cautious. You know, one of the things I heard in the beginning of the crisis is make sure you have a very tight plan. If God forbid, you have to go to the hospital, because one of the early readouts that I got in New York City, was the diabetes care was being delivered poorly to people because most if you're not an endocrinologist, most doctors don't see people with insulin frequently. And that can exacerbate, you know, again, blood sugar levels and side effects. So yeah, it's scary. We're learning a lot. I think we've seen improvements of treatments of people in the hospital. But I would urge caution for type one commodity, have a good plan, if you do get sick.
Stacey Simms 27:10
I'm sure in a few years, we'll have some very interesting research from the countries that do track more closely, like you said, and will know a lot more. Let me move into a different part of this interview. And I should, as you listen, just disclose that I was on the board have my local JDRF for six years. I am a financial supporter of JDRF. I think those are important things to know. But I am happy to pass along your questions. And I had some questions of my own. Aaron, I'm sure you were inundated with emails and suggestions earlier this year, and I sent you one and I know it wasn't alone in thinking this. My question was, and I'll eleska to you now, you know, I know how important JDRF research is, I really don't want it to stop. But you could see at the beginning of this year, the financial issue, the the unemployment issue, the economic problems that this country was going to experience. And it seemed to me like it might have been an opportunity for JDRF to pivot a little bit and give people who desperately need it some financial assistance, I assume that was discussed doing something with supplies, insulin, affordability, that sort of thing. But instead, you decided to continue to fund research. Can you tell us a little bit about that thought process and why obviously wasn't a viable option for JDRF?
Sure. So of course, this year has been brutal. As we lead off, it's been so hard for everybody. And at the beginning of the crisis, we knew that this was going to have a big impact on JDRF. Because we raised most of our money through events, when you can't get together for a walk or bike ride or a gala that that was going to cause us to not be able to fund as much research as we want to be decision. I there are a couple of interesting kind of pieces to your question. One is I think, you know, the decision to ask people for money, which was something that we talked a lot about, and our feeling was our mission to cure to end, prevent, improve lives didn't go away. And I put type 1 diabetes, the COVID didn't type one, obviously, that people are still struggling. And I can tell you, we've had a couple of deaths through gay a neighbor of mine, her son was just diagnosed last month. And this problem, our mission is still critical. So that this isn't to continue to ask people to support us was not to have people feel pressured when they couldn't if they've lost their job if they were struggling. But for the folks who could who had the financial capabilities to lean in and help us preserve some of the incredible mission momentum we have and had going in March and in February and we were seeing across the board so that that was the logic on asking Money. It wasn't intended, again to pressure people it was intended for folks who could. And and I often said it wasn't mutually exclusive, supporting COVID. and supporting T one t are mutually exclusive. So the second part, and this, I think gets into some of our work in insulin access, and how much of our mission is focused on making sure people have access to care versus research. And the board and I have talked a lot about this, the JDRF mission is accelerating life changing breakthroughs to cure, prevent, and better treat TMD and its complications. So if you think about our work and insulin access, it's not our core mission. And people will criticize me or JDRF sometimes for that, but that's what it is. And when I look at other organizations like ADA, or for all or beyond type one, we have different missions. So we've talked to JDRF, about how much more Should we do. So for example, we have a we were doing a ton on policy on insulin access, we think it's critical. But if we were to shift and make that our mission, we would have to change everything we do, we would rearrange our staff, we would probably like a bunch of scientists, and we'd hire a bunch more policy people. So really, what what I think you're getting at is what is the mission of the organization. And our mission has been since 50 years ago, security one day, keep people healthy until we get there through the acceleration of life changing breakers. And that's my optic focus, we will continue to do some of the other critical work like insulin in Africa and developing nations or in the United States for people who can't afford it. I've testified on the hill three times as in front of the Senate and the House, my brother had to his wife had to switch jobs because he runs a small his own small company, and they had a like a $12,000 deductible. So I understand that said, are missing that, essentially outside the messenger apps. And while we do it, it's not the core mission.
Stacey Simms 32:12
If I could devil's advocate for a moment, though, you said earlier in this interview, that you got a lot of criticism and pushback for the artificial pancreas project. And your rationale for seeing it through was we need to keep people alive until there's a cure. When one in four people are rationing insulin in this country. I don't think you have to change your mission to focus more on insulin affordability. And I would even say, Is there no way and maybe Listen, I'm a bit of a pie eyed optimist, and I am not part of the inner workings of JDRF or these organizations. So you can tell me that this is silly. Is there no way to while you're fighting for affordability on the hill? And you're testifying? Is there no way for JDRF to do some kind of assistance program for those who most desperately need it?
Yeah, no, I hear you, Stacy. And we have looked at this. In fact, I rallied our team to look at and explore essentially insulin exchanges that would allow volunteers to donate insulin. And the challenges that we've faced, it have been really around the legal ease of donating a prescription drug. Again, this isn't our core mission. But I can tell you are in terms of our policy, time and effort and work, I would say it's pretty much our number one thing that we're working on, right, and looking at different ways to make sure and I've said it a million times, nobody should make the decision of food or rent or car payment or insulin insane. So it is a priority of ours even as it's outside of our what I would call the center of our Bullseye of our mission. We're devoting countless hours and dollars to try and to rectify and reconcile the problem. Yeah. And it's very, very frustrating to me. I hate that we're even having the discussion for that drug that is required for us to live. It's absurd.
Stacey Simms 34:06
Yeah, it's so interesting, Aaron to talk to you because you are not a and I mean this as a compliment. So let me get through the whole thing. You're not really a CEO kind of guy. Right? You are. You are the first CEO of JDRF. To live with type 1 diabetes. You are a scientist. your background is not in corporate politics. It is in science. You were obviously chief mission officer for a long time. I know you know what you're doing. So I don't mean it in this way. But I can't think of a more challenging year for somebody who is not a business school kind of guy, if that makes sense. Are you looking at this position? Are you still trying to approach it from a scientific viewpoint? Are you using skills that you didn't think you would have to bring to the table? I mean, I hope the the spirit of my question makes
sense. Yeah, no. And that was a big question when I applied when I started The board that I thought I could could be CEO is, well, you know, you're not a financial person or having run a big field organization, and what my response was, but I, I understand our community, I grew up in it, my brother and I and my brothers been doing it for 40 years, I haven't done it for 36 years or something, you know, work with the companies work with the community work with our partners. The beauty of, you know, JDRF is we are a volunteer driven organization. And I get to work with some of the smartest, most accomplished business people who volunteer their time, because their family's been impacted. So I've certainly benefited as a new CEO, from an I never a million years thought I'd be facing a pandemic, the first year, I took this job. But in terms of the areas that I wasn't as experienced in my team members of JDRF, who obviously have incredible capabilities. And then our volunteers, our board, we had a group on the board who helped us with the financials, the analyses, as we're going through the crisis, the people issues, the real estate issues. So just like you lean in and help, we're fortunate that we have so many volunteers who can help and I've taken a lot of those learnings and the experience they bring to the table to help I think Jeff become, I've always been proud of that we're a very efficient organization, and I think coming out of the Christmas will be even more efficient. My greatest strength, I think, is just my understanding of the disease, and the community, which I can bring to hopefully rally more people to support the mission.
Stacey Simms 36:43
This is airing during diabetes Awareness Month, which I personally think is a chance to educate people outside the community. I mean, we're all very much aware of diabetes all year round. So I'm curious, you know, what would your message be to people who are not in the diabetes community? What would you like them to know?
That's a really good question. Because I think, diabetes, you know, as many of the listeners know, diabetes, type one and type two get lumped together. People don't understand them. They don't understand their genetic, they think it's weight driven. And so there's a couple things. One is diabetes. type one and type two are a huge problem in this country in the world. And we need more people leaning into support better solutions. I mean, just think of the advancement of CGM. Now go back in time, and there was a big fight over CGM, you know, was this a useful tool? No, was it too much information? And here we are now, where it's becoming the standard of care, but it's taken a long time. And even in type two, it's still a good question mark, we need to deploy more resources. My very strong personal belief is we need to unite as a type one and type two community, you know, people with type one tend to, I hate to say it, but I kind of look down on type two people. And type two is a genetic disease even more strongly genetic than type one. People don't over eat themselves. And so type two diabetes, it's a huge myth to people with type two, a lot of overweight people that don't have type two, it's a genetic disease. It's a disease. So and the other interesting point not to get too off topic here is, is probably not just type one and type two, it's probably more of a continuum. Oh, sure. So this whole idea of eat, we are an under resourced community, whether you break it into type one, or type two or lump sum us together, we need more effort. And that's where I've talked to Tracy, the brown at ADA, beyond type one, our alliance with the type one, the Helmsley trust, you know, uniting and fighting for better solutions for people with diabetes. Now, if you're not in this community, you're paying, because a third of the Medicare budget goes to treat people with diabetes complications. So we need this country and to appreciate the diabetes are diseases that are genetic that need more resources, because there are solutions on the horizon that will help people and help our economy.
Stacey Simms 39:16
Yeah, I completely believe we are much stronger together. And it's amazing to me how much diabetes is it's like a joke to so many people. It's a hashtag, you know, here's my desert, hashtag diabetes, they don't get it. And we as a community, need to work together to continue to educate and fight those stereotypes and not add to them and not throw people with type two under the bus. So I won't get on my soapbox. But Aaron, thank you so much. And thank you so much for joining me and spending so much time with me and my listeners. I always appreciate
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 40:00
We hit a lot of topics in that interview, I will be happy to link up more information about JDRF research and other things that Aaron mentioned, you can always go to the episode homepage where there is a transcription, just go to Diabetes connections.com. Or if you're listening in a podcast app, you know, every single one of them is a little different. So I hesitate to say open it up there. But if you can see the show notes, if you can see the links, that's an easy place to but it's all on the website. If you have any trouble on any apps.
tell me something good coming up in just a moment. And I have some great news about the show to share with you. I'm so excited about this. But first 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 the share and follow apps makes a big difference. And Benny and I set parameters about when I'm going to call him track him down, you know how long to wait, that sort of thing. It really helps us talk and worry about diabetes less. And if he's at a sleep over or away on a trip, it really gives me peace of mind. It also helps if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours. And not just at one moment. The alerts and alarms that we set also help us keep the highs from getting too high and jump on loads before they are 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.
longtime listeners will know that this is a labor of love. I have been doing Diabetes Connections weekly since June of 2015. I have a wonderful editor. Of course, I mentioned john at the end of every episode. But other than that, it's just me producing and hosting and booking guests and, and pre editing before I send it to john which drives him crazy. He says stop cleaning for the cleaning lady. But I can't help myself after a career in audio. And I say all that to bring you the news that we have hit a really tremendous milestone, and that is 1 million downloads and views. I am stunned. This number really sort of came out of the blue for me, because I know this may sound silly, but I can I can tell you we're close here, no secrets, I look at my podcast statistics with my hosting service liberated syndication or libsyn. And every show, you know, we look at the episodes and we look at the geography where people are listening and all that kind of stuff. And it keeps track of all of the downloads and unique listeners. And they're just really a wonderful and very accurate hosting service. So we ticked over more than 900,000 listeners. So I was kind of tracking to see when we hit a million. But then I realized that we have our YouTube channel as well. And while I cannot conceive of listening to a podcast via YouTube, because most of the time, it's just a static image. We have so many listeners over there, especially in the last two years. And sure enough, I clicked over there and we've had more than 100,000, listens views. What do you call it on YouTube, I'm going to say views. And that's why together, I'll say 1 million downloads and views.
I'm just so thrilled that I've been able to do this on a regular basis for so long with such terrific support from great listeners like you. And that number means a lot. That's a big one. So to celebrate, and this is great timing with diabetes Awareness Month because you deserve a reward for just living with diabetes or having somebody with diabetes in your family. We are going to be doing two different contests. Now these are going to start on the eighth. So that's a couple of days after this episode is released, you will get an email if you're on that newsletter. You will also see it in the Facebook group. Or if you follow me on Instagram, one contest on Instagram where I am Stacey Simms, and a different contest for people in the Facebook group. And the Facebook group is Diabetes Connections, the group so stay tuned for that, watch your email. If you are not already signed up for the newsletter. Like I said, click on the ebook link in this episode, or maybe you've seen the ads running in Facebook, or go to Diabetes connections.com the subscription thing should pop right up the newsletter subscription. But if it doesn't just scroll all the way to the bottom and it will have a little spot for you to sign up for the newsletter there. If you have any trouble just reach out to me Stacy at Diabetes connections.com. All right, here we go on to our second million downloads and listeners and views. Oh my goodness, I can't believe it. Thank you so much.
Next week, we will have a special episode for Veterans Day talking to a veteran who was diagnosed while in the service was able to stay in the service. This is only the second person I know has been able to do this. And then what he did and has done after and the accomplishments that he's made in real the change that he did. It's really an interesting story. And I'm excited to bring it to you and that is next week. Okay, thanks 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. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Have you seen your doctor remotely this year? Turns out that endocrinology is the number one specialty using telemedicine in 2020. We talk to Dr. Peter Alperin from Doximity about their recent study that says about 20% of all medical visits will be conducted via telemedicine this year. We also talk about what this means going forward, how to get the most of a visit when you can't be in person and why the heck doctors' offices still use fax machines!
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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 Hypo-pen, 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.
Stacey Simms 0:28
Hi, and welcome to another episode of our show. As this episode goes live, it is Election Day in the United States and we are not going to focus on that here. I am guessing many of you have actually found this episode in the days following its initial release. But whenever you are joining us I think this is a really interesting topic that you know many of us experienced for the first time this year. And that's telehealth.
If you are new to the show. I'm really glad you found us. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes. My son Benny was diagnosed when he was a toddler way back in 2006. He is now a sophomore in high school and we had one telehealth visit earlier this year. That was back in March, when everything started, we were able to go into the doctor's office for his summer and fall endocrinology appointments. I talked more about the experience, you know how it went some of the pitfalls that we ran into for that first telehealth appointment. And I do that in the interview.
Just a heads up this will be a shorter than usual episode is just the interview, we will have a regular episode with our segments with Tell me something good and all of that later this week.
For this episode, I am talking to the folks from Doximity. This is a professional medical network, sort of like LinkedIn for doctors. They had a study recently that said endocrinology is the specialty that uses telemedicine the most number one at everybody. And there are some interesting reasons why, of course remote or telehealth or whatever want to call it was huge earlier this year, it did peak around April or May. But there are some predictions that about 20% of all medical visits will still be conducted via telemedicine by the close of this year by the end of 2020. And that would represent about $29 billion worth of medical services. It is certainly worth watching.
So why endocrinology? What does this mean going forward? And why do doctors offices still use fax machines? Those are some of the questions I asked Dr. Pete Alperin, who joined us from Doximity. Dr. Alperin, thank you so much for joining me. I appreciate you spending some time with us today.
Dr. Peter Alperin
Thanks. Thank you so much for having me looking forward to it.
So a lot to unpack here with this study and why endocrinology but let me just back up first and ask you what is Doximity? What do you all do?
Dr. Peter Alperin 2:51
So Doximity is the largest online network of health professionals in the United States. And I think a great way to think about us is we're like a LinkedIn for healthcare professionals. We started off primarily with physicians, but we've expanded to include nurse practitioners, PhDs and a variety of other you know, healthcare professionals that range the gamut from, you know, optometrists, etc, to physical therapists and pharmacists and the like. We have over 70% of United States physicians have joined our network, and we have over, you know, 1.2 million members overall. And when I say it's like LinkedIn, you can think of it as LinkedIn, but tailored towards the healthcare professional. So we have a lot of features that are very specific to the needs of the people who work in the medical field. So we have HIPAA compliant communication, including faxing, we have our Doximity, dialer, video and audio products, which allow physicians to communicate easily securely and reliably with their patients. And then doctors can connect with each other much like you would on other social sites, and earn free continuing medical education. And they keep up on the latest Medical News. And we have a news feed, which is one of the biggest features on our site that allows the health care professionals to keep up on the latest and greatest in their particular fields, as well as just general information about the health care profession.
Stacey Simms 4:09
So one of the things that you've done with Doximity this year is well, I assume you do this every year is a state report, right? The 2020 state report and this is the state of telemedicine. I'm just curious, do you do that every year,
Dr. Peter Alperin 4:22
which is the second year that we've done this, and we've done studies in a variety of other areas. So we've done workforce studies, but we have a unique position in the market, being able to you know, call on the information and the opinions of like I mentioned over 70% of the US physician base and as a result, it gives us a really nice vantage point so that we can understand and really learn about these issues, particularly workforce issues.
Stacey Simms 4:48
So let's talk about the 2020 state of telemedicine report. And it's interesting because I have a great audience. I have a very smart audience but I also have an audience that is uniquely positioned to experience probably just as much if not more telehealth than anybody else in the country this year, so I'm really curious to hear these results because endocrinology was the number one specialty that utilizes telemedicine the most in that study, tell me a little bit more about that by number by percentage.
Dr. Peter Alperin 5:16
So it's by percentage, it probably isn't, it wouldn't be by numbers, mainly because there just aren't enough endocrinologist to make that a possibility. But the situation is that we surveyed, you know, 2000 of our physicians on our user base, and ask them a variety of different questions. And one of the things as you noted that that became clear was that endocrinology was one of the top professions it was the top profession, in terms of utilizing telehealth and it's that isn't surprising, mainly because endocrinologist take care of patients with diabetes, as well as other obviously, endocrine disorders, but it's a very chronic disease, heavy specialty and chronic disease is uniquely amenable to the telehealth platform, because patients with chronic disease need to be seen by their health care professionals on a longitudinal basis of you know, for many years forever. And it is something where you can have many light touches, so that you can have a dietitian who might touch the patient, the physician, you know, diabetes, education, and, you know, runs the gamut. And as a result, because endocrinologist obviously specialize and have more diabetes patients than the average doctor, it stands to reason that they would be the specialty that has been utilizing this the most. We've also noticed in our study, and you may have noticed this that chronic care visits were completed at a higher percentage on telehealth and other regular type visits, more acute care.
Stacey Simms 6:38
I'm curious, in the study, do you talk about the quality of these meetings because we've had telehealth this year, my son sees an endocrinologist, every quarter, we sometimes stretch it out, but we see every quarter. And we did one visit during this time that was remote, and it went fine. I had a little bit of you know, I have a we had a few issues, just getting some reports, it was fine. Did you talk about quality at all.
Dr. Peter Alperin 7:02
So the study didn't really dive into that I can tell you from personal experience, that you do need to learn how to do a telehealth visit, you need to prep your patients properly. And so it is very, very beneficial if you send patients at least the ones who have not had a visit before on using a telehealth platform to you know the different tips and tricks to be able to make that visit as ideal as possible. And then the physician themselves needs training to make sure that they understand how to interact, look at the camera, the variety of different things. So we didn't go into that in this study. But it is something that I know is important for all physicians and frankly, patients to have to kind of acclimate themselves to that communication platform.
Stacey Simms 7:46
Yeah, our biggest problem was the actual reports. My son uses an insulin pump, he uses a continuous glucose monitor, and they have separate reports that are you're able to get online. But you know, we had sent it or the office had called us. And here's the clarity report, login. Here's the T slim report, login. And then the doctor was online. He's like, nobody gave me anything. So I had to give him like my login while we were talking. It was really fun. We've known him for 14 years. So it was no big deal. But it was funny to have to. I think we were also his first visit that way. I'm sure it got better. But it was funny. You know, especially with diabetes, especially with type one, there can be so many technical things, if you're lucky enough to have access to the technology. Okay. Anyway, let's get back to the report. I know it's a little early to extrapolate, you know, from a report like this, but what do you think I mean, in on your network? Are physicians excited about telemedicine? Do they like it? Do they think it's going to continue?
Dr. Peter Alperin 8:38
So they do think it's going to continue? And I think they're excited as well. I think there was a little bit of trepidation in the beginning, because it was really thrust upon people. And I think there remains some unanswered questions. So let us sort of let me go into each of those. There's no question that telehealth is going to stay. I mean, we're the expectation is that there'll be $29 billion worth of telemedicine telemedicine visits by the end of 2020, and over 100 billion by the end of 2023. So this is something that is very, is absolutely not going to go away. And it's not going to go away because patients like it. And frankly, physicians are going to like it as well. The reasons that patients like it are is that it's it's quite convenient. And particularly for patients with chronic illness, or patients who have difficulty getting to the doctor's office, it can really be a lifeline. It's much easier to have additional visits over a telehealth platform and then have maybe a quarterly visit where the patient actually comes in to see you than it is to have that patient come to your office, you know, every few weeks, if I'm talking about patients who have you know, particularly brittle diabetes or you know, need to be seen on a more frequent basis for whatever particular reason. I think that if you look at the study, you know that it bears that out with the increase in the in the chronic care visits that you saw, and also just the satisfaction in general. Now, like I mentioned, there are a few kinks that need to continue to be worked out right now. As we noted in the study, the payments for these visits is not 100% certain going forward, although all indicators are that this is going to be made permanent. But you know, if I'm being accurate right now, CMS, for instance, is operating on waivers that allow you to build for the visit in the way that you would want to be able to all as I mentioned, all indicators are that's going to be made permanent. That's probably the biggest sort of thing that remains to be worked out. But private payers seem to be following suit as well.
Stacey Simms 10:27
Now, you're an internist. You're not an endocrinologist, but I know you've seen patients, people with diabetes. I'm curious what you think about the missing element of telehealth, especially as it pertains to chronic condition like this. And that's the person that's the in person relationship. And as a parent of a child with type one, as a wife of a husband with type two, the personal relationship that they have with their separate physicians is so important to their care. And well, I think telehealth is great, I would hate to see it take over. Right I really my my son, I were talking about this, and he felt the visit was worthless. It was not we actually made it he's 15. He thinks a lot of things are worthless. But we made basal rate changes, we checked in on certain things. But then when we were able to go back to the office over the summer, he thought it was a much better visit. I don't know from where I stood there was wasn't as dramatic a difference as he indicated. But I think he had a lot to say about it. I'm curious, from your perspective, as the physician, what you think about that,
Dr. Peter Alperin 11:27
you know, I think that there's never going to be a substitute for an in person visit full stop. But that said, I think it's like all pieces of technology, the key is finding the right place to use it. Because it's not about the technology. It's about the physician patient conversation and the care that you're delivering. And so the best technology is invisible, right, it disappears. And so that you really it's about that connection that you have. I think that like we talked about in your previous question, there does need to be some acclamation on the part of the patient and the physician in terms of getting used to this. But I still strongly believe that the overwhelming I guess you would call it, the fundamentals of it are really just on the side of telemedicine, it's efficient, you have the ability to touch more patients. Now, one thing that I've thought about is that a telemedicine visit is always easier with a patient that you already know. Yeah. So that's also another reason why I think that in the realm of chronic care which diabetes is squarely in the middle of, you're going to need to have that initial visit with the patient in person. But over time, having a phone call or a video visit is actually fine. Because you know, the patient and the patient knows you, it is a little trickier for an acute care visit, it's just a little bit the physical exam is a little bit more difficult. Obviously, in patients with chronic disease, you don't need to do a full physical exam with every single visit it really, you know, it obviously depends on why they're there and what their particular symptoms are. So I do agree that the inpatient visit will never go away, and, frankly, is probably a more satisfying visit, because I think humans are social creatures, and they really like that connection. But that doesn't mean that the telemedicine is somehow you know, inferior, or it doesn't mean that at all. And it also doesn't mean that that it's not going to stay, it's just going to have to be used in the right circumstance.
Stacey Simms 13:11
I hope they keep it in our local office, I think we could see switching our for yearly visits to to in person and to via computer, it was just you know, it's also a 45 minute drive. Yeah, it's a nice step to heart and you have,
Dr. Peter Alperin 13:25
obviously in a time of a pandemic, you are running the risk of infection of other people. And obviously patients with diabetes, many of whom are older, the run the risk of getting that infection are at higher risk of covid. And the whole nine yards. And the other thing is, is that you know, even when the pandemic is ending, let's fast forward, you know, a couple years, I still think it's going to be very beneficial for patients, particularly patients who don't have, you know, the means to come to the office that easily. So it's important to consider that as well.
Stacey Simms 13:54
I'm curious to one of the things that our doctor talked about was trying and this was way at the beginning, he was trying to figure out how to help patients do the kind of physical exam that he does in the office. In other words, looking at fingertips to make sure that you know, they're not poking the same finger or they're, you know, the fingers are doing okay for blood sugar checks, checking the sites, where a pump inset would go and teaching patients how to kind of do a self check, which a lot of people have never thought to do with diabetes. I haven't checked in with him because as I said, we went back in person and I know they're doing in person visits now. But I'm curious if things like that have come up maybe even in other practices in some of the chats and conversations that you've seen.
Dr. Peter Alperin 14:36
Yeah, I mean, both personal experience and then, you know, being at duck somebody I have a unique vantage point on the conversations that occur on our newsfeed where you'll see the you know, the the chatter back and forth about a particular article. The answer is there are great many things that you can do to help with the physical exam and this gets back to again, you know, having the patient be properly prepped, if you will, for that visit. So that they're in a comfortable seat so that there's good lighting, that they have loose fitting clothing, that they're aware of the things that you might do so that they have also, you know, the proper undergarments. So depending upon what the physical exam might be, but there are certain things you can't do like it's very difficult to palpate and do an abdominal exam right over the phone. And it's just it's a tricky part of the any, any physician will tell you, the abdominal exam has always been one of the trickier parts of any exam. It's also hard to listen to lungs, if you will, over the phone. But there are some things you can do. For instance, if a patient's complaining of abdominal pain you and they and their mobile, you can ask them to sort of maybe jump up and down and see whether or not that hurts, because really what you're looking for is a sudden jar, far from the exam that all of us learned in medical school, and probably far from the same level of sensitivity and the ability to diagnose things, but it certainly can help. But that's where the importance of triage comes in. And that's why having a front office that can understand when a patient needs to come into the office versus not come into the office is important.
And look, I've converted telehealth exams to in person ones where I've said at the end of the conversation, you know, this was great, but I think I still need to learn more, why don't you call the office and find out if there's a time you can come in in the next week, then that kind of thing. You know, it is being taken up by physicians of all ages. And I think that was a really interesting finding that, you know, typically technology is always adopted more more quickly, among younger people just across the board. Here's a case where that's not true, where it's physicians in their 40s and 50s, who are actually taking to telemedicine more quickly than physicians in their 30s, then one of the reasons that we think that that's true, is that physicians in the 40s and 50s are the busy physicians are the ones who see the, I hesitate to say in this in the those salad years of their life where they're raising families, and they have, you know, mortgage payments and life. And so they're working more, I also perhaps think that their practices are bigger, they're more comfortable with their patient base. And it takes a certain level of comfort, like we talked about with your patient panel, and the folks that you're caring for to have a telemedicine visit be just the most optimal thing that can be again, not that you can't do it when you're a younger physician. But when you're just starting out, you don't know quite as much. If you ask any physician, they'll tell you that the amount of learning that they did in their first three years after their residency training is just absolutely the most because that's when you can't turn to anybody else and say, hey, what should what would you do about this? It's your The buck stops with you. So you learn a tremendous amount when that happens.
Stacey Simms 17:29
You heard me laugh a little bit, because when you said older physicians, I was expecting you to say physicians in their 60s, perhaps even into their 70s I did not expect you to say physician 40s and 50s. I know, we're all well, you know,
Dr. Peter Alperin 17:44
it's a good point, you know, half of all US physicians are you know, over 50. And, you know, there's a probably a big wave coming of physicians or, you know, start to cut back.
Stacey Simms 17:56
Well, someone as someone who is pushing toward 50 very rapidly. I'm not happy to hear the older term being used.
Dr. Peter Alperin 18:02
I'm over 50. So it
Stacey Simms 18:05
is what it is. Hey, before I let you go, one of the very first things you said I made a note to come back to you were talking about Doximity and your type of the things that everybody can do. And then and you mentioned fax machines.
Unknown Speaker 18:18
Stacey Simms 18:19
It says nothing to do with anything we've talked about. But I have to ask you, why are American doctors in our health care system still using fax machines? When nobody has been at home? nobody uses the technology anymore.
Dr. Peter Alperin 18:32
I mean, why? It's a fantastic question. And it has its roots. It's really it comes down to two things, but it has its roots in the HIPAA law. So most people on I imagine in your audience are familiar with HIPAA. A lot. Most people are familiar with it. But so that's the primary piece of federal legislation that governs patient privacy, it also governs communication. And when HIPAA was written in the late 90s, or mid to late 90s, the fax machine was ubiquitous. I mean, that was 25 years ago, but the fax machine was grandfathered. And therefore if I send a fax to another physician, or anybody that the communications and the security around that is just handled differently, legally, and there's more protections for it. So that's the first thing. So that's why faxes never went away. And then at the same time as electronic health records came about, and, you know, email became the primary sort of medium of communication that was not covered. And therefore there's all sorts of security protocols that need to happen. You need to use secure email and there's patient information. And because of those security issues, it's an a patchwork just to quilt of rules and regulations. physicians have just stuck with the fax machine because it's in every physician's office, and now it's on every physician's phone. It was the very first feature we created because it's the thing that positions us. I mean, I fax something this weekend, the sending orders to a nursing home for a patient who needed some medication changes and so from your phone from my phone And so that's what we offer on doximity is that ability to fax, receive, send sign and send it. So I never touch a piece of paper per se. But it all happens over a fax protocol. And that's actually what a lot of physicians do. So it's not always when you hear fax machine, it's still a ton of paper. But a lot of physicians have moved to E fax. So you see that as well. And I
Stacey Simms 20:19
guess as patients, we can do that, too. I had an effects account for a while, but I only used it for doctors. Exactly. I
Dr. Peter Alperin 20:25
know. It's a very interesting thing. And there you go.
Stacey Simms 20:30
I know you weren't expecting to talk about that. But it is
Dr. Peter Alperin 20:33
a great question. You know, we still have a huge number of our users who who use our fax machine. And it's the kind of thing that even if you're not a heavy fax user, you still need to have one because you need to be able to receive information from other physicians.
Stacey Simms 20:44
Well, Dr. Alperin, thank you so much for joining me, this was really interesting. And I hope you can come back maybe and let us know other things that you find in Doximity that are of interest to people with diabetes. Thank you so much.
Dr. Peter Alperin 20:54
Thank you so much for having us. It's an important study. It's an important time in medicine, and we appreciate you helping us get the message out.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 21:12
You can read that study from Doximity and some other information. I will link it all up on the episode homepage as usual at Diabetes connections.com. There's always a transcript for every episode in 2020. And we're starting to go back and fill those in for previous years as well. I'm asking in the Facebook group if you went to a telehealth or remote visit this year, and if so, would you do it again? I definitely would as you heard me say, you know Benny wasn't crazy about it. That's because he likes he's driving now he likes to drive down to the office he likes to see and be seen and he has a great relationship with our endo but I really think if we can get away with it we have to see the four times a year although I stretch it out probably like most of you so it's really three times a year just you know, you know you can work that calendar, but I think we could probably get away with one or two remotely and with Dexcom I don't need an A1C from him all the time. You can see the estimate, but we'll see how it goes. love to know what you think.
Thank you to my editor John Bukenas from audio editing solutions. Thank you for listening. We will be back in just a couple of days with a regular length episode with all the segments. I am doing a bit of a state of state with JDRF with Aaron Kowalski, who is the CEO of JDRF wanted to get his take on this really unusual year, what research is going to be stopped or or held up or even everything's going to progress but nothing is as normal with JDRF or anything else. And it was really interesting to talk to him and also let him respond to some of the criticism from the community that JDRF has been hearing recently. That will follow in just a couple of days, likely Thursday of this week. Until then, I'm Stacey Simms. Be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Meet Leo Brown from this season of The Amazing Race! He lives with diabetes, but his story isn’t a typical one. Leo was born with congenital hyperinsulinism, where the body makes too much insulin, and had almost his entire pancreas removed. Leo will share his unique story and tell us about running the race with his girlfriend, Alana.
In Tell Me Something Good, babies! Weddings! And a football first for someone who’s been kicking t1d every day for a long time.
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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 Hypo Pen, 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 0:28
This week, meet Leo Brown, a contestant on this season of The Amazing Race who lives with diabetes. Now on the show, he's racing around the world with his girlfriend, Alana, but they had what could have been their biggest setback before the race even got started.
Leo Brown 0:42
I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There was one thing I didn't remember it was in the fridge. It was lined up like little soldiers.
Stacey Simms 0:57
Oh my gosh. Well, Leo's story is not a typical diabetes one. He was born with congenital hyperinsulinism, where the body makes too much insulin and had almost his entire pancreas removed. He developed diabetes at age 19. And he'll share his unique story and tell us about the race
In tell me something good babies, weddings, and a football first for someone who's been kicking T one D every day for a long time. 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 love The Amazing Race. I started watching when I was pregnant with my daughter Lea. And that was 19 years ago, I realized that talking to Leo and doing this episode Oh my gosh. Anyway, welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed almost 14 years ago, when he was a toddler. I have a background in broadcasting and that is how you get the podcast.
It has been two years since the last version of The Amazing Race aired and I really have been excited to see it come back. It's just great to see people traveling again. As soon as the first episode of the season aired in mid October, my eagle eyed diabetes friends started posting photos of Leo at one point he's playing the steel drums and you can clearly see the Dexcom on his stomach. I like many of you jumped to the conclusion that he lives with type one. But it turns out his diabetes story as I've already teased a bit is very unique. And we'll talk about that with him in just a moment.
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 includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor's visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.
My guest this week is Leo Brown from Season 32 of The Amazing Race. His partner on the race is Alana Folsom, they have been dating for less than a year when the show started. And they're now married. So we don't know how they did on the show. But that's a great outcome already. Leo and I recorded this interview over zoom and there is a video version which I've put on the YouTube channel. And that's just Diabetes Connections over on YouTube. But there's two things you need to know as you listen, the audio is a bit sketchy here and there, Leo and Alana upgraded their Wi Fi during the interview. Literally during the interview, she called and got the Wi Fi upgraded we stopped and started a bit before that happened. I took all of that stuff out. But you can hear some stuff here and there. And if you see the video, you will see the shirt that I am referring to as we start out here. But if you're only going to listen, I promise you will get the gist.
Leo, thank you so much for being here. I appreciate you spending some time with me tonight.
Leo Brown 4:23
Thanks for having me excited to have a chat.
Stacey Simms 4:26
All right. Well, first of all, I have to ask you about your shirt. Because I saw that hashtag on Twitter that you guys were using. What is beloved lovers? I wanted
Unknown Speaker 4:35
to hear you say it first.
Stacey Simms 4:37
Wait, let me do my radio voice! Tell me about – beloved lovers.
Leo Brown 4:41
Oh, absolutely. So Alana I got married over a month ago. And we have a Ketubah which is a Jewish wedding contract. And in a traditional Ketubah it says you know the man this and that husband this wife that right and We wanted our Ketubah to be egalitarian. And we didn't really see a need to indicate our gender. But that's not really what what relationship is about. And so we talked to our Rabbi who's extremely, you know, open minded and accommodating. And he came up with some text that is egalitarian. And the translation from Hebrew to English was beloved lover, and really like that. And so in the in the wedding, which we live streamed, because we couldn't invite most of the people we wanted to, because the COVID, he explained that and there was a live chat on the YouTube live stream that was happening, everyone was like, beloved lover, and then they started writing hashtag beloved lovers. And then I think somehow that got picked up by some news source that like follows Amazing Race, or it was like doing some promo about Amazing Race. And so when they were introducing the teams, and it was just this little this article that got that was going around, they said, Will and James dating Hung, and Chee married Leo and Alana lovers. And so our cast has all had already kind of decided since our wedding because they had all called into the wedding that we were having, like beloved lovers. And so we went with that. And this is our beloved lovers shirt on the back and says Leon & Alana, and a little globe, that is where beloved lovers came from our relationship and our wedding.
Stacey Simms 6:25
So okay, my husband and I have been married for 21 years. I'm making a note for our when we renew our vows for our tuba, maybe at 25. Oh, yeah, back and change the language
Leo Brown 6:35
as a couple that had to severely downsize our wedding. We are strong believers in renewing vows, or just having another wedding whenever you feel.
Well, you know, weird way you kind of put the honeymoon first with The Amazing Race. So let's talk about that. Because you both were I mean, I didn't know if I could ask you about your relationship, just because you're never sure on the show. I've seen I've watched the show for years and people are dating that they break up before the race even ends. Or maybe they stay together. Well, obviously, this had a really happy ending. But take us back to the beginning. When did you all decide to sign up for the race? You were just dating?
Yep. So we met on Tinder in January of the year of the race. And then on our second date, I think we were watching The Amazing Race with my roommates at the time because they were fans and a lot. I was a fan and I hadn't seen an episode or two. And that was the first time when it was my roommates who said you better be great on the race. And I thought yeah, sure, I think we could be and, you know, nothing else really came of it. And then six months later, Ilana and I moved in together, I think it was our second night of living together when we had it. All right, let's make this video. Let's send it in. Let's see what happens. And that was in July. And then a couple weeks later, we got a call from casting. And then over the course of the summer and fall that we went to LA a couple times. And then the start line was our 10 month anniversary. So that was a that was a really fast and an incredible progression that we weren't expecting,
Stacey Simms 8:11
we will return to the Amazing Race to your relationship to your reading lots of questions there. But tell me about your experience with diabetes. Very unique. What happened? Tell us your story. Sure. So I
Leo Brown 8:23
can start long before I knew I had diabetes. Because I wasn't diagnosed with diabetes till I was 19. As an infant, though, I was diagnosed with congenital hyperinsulinism, which I always explain as kind of like the opposite of diabetes, instead of making not enough insulin, I made way too much. So it's a rare genetic condition that you're born with and usually presents at birth. And it's an emergency, once you're born, you have low low low blood sugars. And one of the biggest challenges is that doctors who delivered you and you know, like neonatal care doctors might not have ever heard of congenital hyperinsulinism. And to make matters worse, infants sometimes have low blood sugars, as like a natural and okay thing. And so many parents, including my own then are told initially some version of Oh, that's nothing really to worry about. And the story you hear time and time again from these congenital hyperinsulinism parents is I knew something was off like I'm not a medical professional, but my child needs help. And in my case, will that eventually led was to subtotal pancreatectomy ease. And so the first one was when I was six weeks old, and that was like 95% of my pancreas was removed a big scar across my stomach from that. And then when I was six months old, much of remained was also removed in a second subtotal pancreatectomy and after that, by the time I could remember, basically, I have like very early memories of my blood sugar being tested because my blood sugar was of interest at that point, everyone needed to know what it was and why it was okay. And for the first couple years, my parents had to do a lot to help manage that. And lots of doctors involved and try different drugs and eventually figured out something that could sort of stabilize my blood sugar and help me start to live a normal life. And by the time I could remember, I pretty much did live a normal life. You know, I went to kindergarten like any kid, I had a scar, I had a second scar from a feeding tube that was called my second belly button, because I have an outie. But then there was this any nearby. And as life went on, I felt very much like a normal kid who had this, you know, this complicated beginning, but I thought that was all kind of behind me.
Stacey Simms 10:56
But let me ask you before you go on, and I'm sure your parents have shared with you what actually happens when when a child is born with low blood sugar? Like you said, it's not as though something they're not often looking for that kind of thing. And it's extremely dangerous. Do they just are they poking your fingers when you're an infant? Or the you know what happened? Yeah,
Leo Brown 11:15
my parents may remember, even better memories than I do. But I know that you test a baby's blood sugar at, you know, most hospitals, good hospitals when they're born. So I mean, I think that tests This was 30 years ago. So longer, or like longer land sets, but generally a lot has remained the same in in that you test a baby's blood sugar. And if it's low, if you're lucky, someone says, Yeah, could be serious. It could be totally fine. But I think they had a lot of experience testing their tiny baby's blood sugar.
Stacey Simms 11:54
Did you go I guess my question is, did you go home? And then have these emergencies where you had to be re, you know, brought back your parents didn't know what's going on? Or did they know before they even left the hospital?
Right back to Leo, answering that question and explaining more about congenital hyperinsulinism. But first, Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes, that's a wonderful thing about share and follow as a caregiver or parent, spouse, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom, follow separate follow app required, Learn more at Diabetes connections.com and click on the Dexcom logo. Now back to Leo, who by the way, has a great Dexcom story later on in the interview. Oh my goodness. But here, we are talking about his parent’s early days of his very scary diagnosis.
Leo Brown 13:04
I believe my parents didn't have a clear diagnosis before I was discharged at the very beginning. And then within weeks, if not days, I was brought back, you know, they said he's having, you know, he had a seizure. He's not getting better, like this low blood sugar thing is, is here to say and I I'm again, my parents would have a lot more to say. But at some point, they were equipped with a blood sugar testing kit to you know, check me regularly at home. But I think that within those first couple of days and weeks, they quickly discerned that something was off. My parents used to have this box and at some point I said I need the box because once in a while I need to be able to explain to people not in an interview, but in a doctor's office what exactly happened. But yeah, it you know, it from what I know congenital hyperinsulinism and other stories I've heard from other parents, honestly, that I can tell you as much about that as my own early early story. The prevailing pattern is that the parents are told that the low blood sugar is not something they need to really worry about, because babies have that sometimes. And right, a large part of what the community and an organization I'm working with congenital hyperinsulinism International is trying to help medical community understand is you need a checklist saying this could be congenital hyperinsulinism. Obviously research for early diagnosis, treatment, but early diagnosis is in some ways more important because if people aren't looking for it, then it is a you know, it's a very rapid escalation. As you can imagine. It's just like if you were getting injections of insulin that you didn't ask for.
Stacey Simms 14:54
Yeah, scary stuff. Yeah. So you have these operations. You're growing up just fine. But you have been told your family's been told that you will eventually most likely develop type one diabetes or something that's very similar.
Leo Brown 15:06
Actually, that didn't become what people were told until more recently, this, I think, has to do with better research and sort of documentation about the progression of the disease also, as early treatments have become more effective, and there's still a long way to go there. I'm you know, most people don't get to go to kindergarten like I did without some sort of special needs. Or even just like having a continuous glucose monitor, right? You might not be I mentioned special needs, because like, as soon as your blood sugars are low, you could have that could affect your brain in some way. But also, even if you don't have that consequence of the low blood sugars, you might still have a lot of trouble controlling your blood sugar's early in life or throughout your life. And so the fact that I didn't have any of that, from nursery school, kindergarten and on through the beginning of college is sort of unusual. But to your question, my parents were not told that I would get diabetes, part of the reason, I think is because my pancreas was making so much insulin, there was a thought that removing just the right amount would lead to me being just fine. Or, you know, you might not remove enough like, I might still have low blood sugars, like there was no assumption that I would have diabetes, although my understanding is more recently, that's become more of a an assumption that like you do this type of operation. And then no one knows when, but eventually you will have diabetes,
Stacey Simms 16:38
or and now I have one more dumb question or the surgery for we move on. I know, everybody wants to know about you, and the Dexcom and The Amazing Race, right. But I'm so curious, we think about the pancreas, and I think most people in the diabetes community understands that it's not dead, you know, it didn't stop doing everything it's supposed to do. But we don't think about it as doing anything much more than producing insulin, you have like this much of a pancreas left, and you have been living this happy, healthy life, even though we're gonna talk about your diagnosis. Are people generally surprised when they hear that it's, it's more of an education for you to do? Because I gotta tell you, when you told me that, I thought that's not at all what I felt what happened?
Leo Brown 17:13
Yeah, I wish I could read the logs of my pancreas to tell you exactly what it's doing and what it's failing to do, like if you were trying to debug it. And, you know, there's not an easy way of getting in there. And and finding that information. I mean, you really would have to, you know, I engage any doctors I encounter and try to get those kinds of answers out of them. Like, what is it that my pancreas is not doing? Like, I know, it produces all sorts of hormones, other than insulin, I don't have the background to even ask the right questions, right. But all I can say is that with a little bit of pancreas, you can get a little bit of function. And I guess enough such that I don't I'm not diagnosed with anything other than diabetes. But it is a great question. And there's not a ton of patients to do this research on. Nor is it something that you'd want to interfere with someone's life to do research on, like, you were to poke around in there, like you could cause a problem. So on some level, you kind of just keep an eye on it. But one thing I do quickly want to add is that my parents and I, after I was diagnosed with diabetes, we were really kind of kicking ourselves like, doesn't it make sense? You took my pancreas out? Why didn't anyone mentioned that? This could just it seems like common sense. I mean, not I'd never thought about diabetes before. But my parents had certainly thought a lot about blood sugar. And they were like, course, like diabetes?
Stacey Simms 18:43
Nah, I gotta say, in everybody's defense, I think I would just be very happy that my baby who was going super low, all of a sudden, they figured out was wrong. They fixed it. You went to kindergarten, if the doctors aren't telling you why we're going to
Leo Brown 18:57
we think, clear. And you know, we weren't testing my blood sugar after I was, you know, in first or second grade, like and, and there's no indication that there was any need to at that time, no symptoms. Yeah.
Stacey Simms 19:10
So what happened? Did you go to college and start having issues or did it come suddenly. So
Leo Brown 19:14
I went to college, I look back and I wonder when the symptoms really began. But by the time I was diagnosed, I was working. I was with summer after my freshman year, I was working at like a family run vegetable farm in the Berkshires in Western Mass where I was in college. And I thought I was you know, I'm a pretty fit person. I'm not a college athlete. And I was with a couple of college athletes on on this farm. And so that was what made me kind of doubt that will maybe I'm not cut out for this. But long story short, I couldn't really make it through the day. There was a moment I remember where I was trying to get into the pickup truck that we were driving around, and I could get in but I had to like I would just like go put my hands on the wheel and just use my arms to just like, drag myself into the pickup truck. And that was odd. I'm not used to having that much trouble with something that seems simple. Why wasn't I using my legs? Right? I probably was, but it was I wasn't using my body the way I normally would. And then I also, again, no surprise to the community, I had to pee all the time. These guys I was working with were thinking like, what's wrong with Leo, like, all he does is go to the bathroom. And he's not very good at any of this manual labor. And I was starting to think maybe I just am sickly. I'm just someone who is not as fit and capable as I thought I was. You know, I'm not one of these college athletes. So who knows.
So I went home for a couple weeks, I said it was a vacation, you know, I'd kind of plan to take two weeks off at some point in the summer anyway, I was at my girlfriend's house at the time hanging out with her and her family, just in the living room, really low key, like someone was watching TV, someone's reading the newspaper, we might have been playing board game, and I was just lying on the floor, basically, I would only get up to go to the kitchen and get like a tall glass of milk. And I think I went through an entire gallon of milk. And then I you know, I was like super comfortable in this environment. So I wasn't pretending to feel any better than I was. But I also wasn't, I wasn't unhappy. I just had no energy. I was like, I was completely down for the count. And her mom is a scientist. And she said, You're not well, and you should go to the doctor, you should go home and go to the doctor. And I did and they tested my blood sugar. And it was 650. And so that was you know, right away, they put me on insulin. And skipping forward a bit. I went back to the farm Two weeks later. And they were astonished by like, I'd gained 20 pounds back. I had an I could do stuff. Do you remember how different you felt? Once I was on insulin right away? I had, yeah, like 10 times the energy, things felt easy, I think is the biggest thing. Like I wasn't unhappy. I just was confused by why I couldn't do what the type of thing that I thought I would be able to do. And again, I'm not. I don't think of myself as physically fit first and foremost. So in the back of my mind, I was always thinking maybe I'm not as fit as I thought I was versus an athlete, student or professional, who would sort of automatically know my performance is going down like something's wrong. I didn't think that.
Stacey Simms 22:33
All right, well, that's a fun way to start talking about the amazing race. Because I have been watching this show for I realized recently 19 years. And I've always thought, oh, that'd be so fun to do. And then I remember each season, why would never succeed, because the athletic ability you need just to survive and run from place to place is unbelievable. So I have lots of questions from listeners. I have lots of my own questions about the race. But the really the biggest one we get is, you know, how do you manage diabetes in a situation like that with travel and running? So if we can ask, we all saw you with the Dexcom while you're playing his steel drums and episode one that got everybody's attention and diabetes,
Leo Brown 23:12
even I didn't notice that in the clip.
Stacey Simms 23:15
Do you do if you don't mind it? Again, this is kind of personal. Do you take insulin pens? Do you use a pump anything like that? Yeah,
Leo Brown 23:21
I've tried different things over the years. And again, because my diabetes isn't type one or type two, it's hard to sort of draw comparisons. But the number one thing I do to manage my diabetes is through diet. So I eat a very low carb diet. And that is something I've always tried to do as much as I can have over the years. And at times that's enabled me actually to get off of insulin. However, there are so many variables. And on the race, I was not on regular insulin prior to the race, but I brought insulin on the race and had to use it in particular, because I would encounter food situations that I would not have chosen. And I also just didn't know what I was going to encounter. And that was also why I had the Dexcom, which I had. Well, I shouldn't say that's why I had the Dexcom. I've been using the Dexcom for some time. And that is also part of what has enabled me to kind of use insulin as I need it more recently, just to provide a little bit of context. When I was diagnosed, I did use Lantus and homologue, kind of a traditional prescription of insulin, as I discovered that I could use less insulin, if I ate fewer carbs, I over time would sort of rebalance my insulin with my diet. There are times that I wasn't using the insulin that I should have been. And I would sort of tell myself that I didn't need it. And if I didn't test my blood sugar, then I couldn't prove that I needed it. And then more recently, since the race and I'm not sure if this is you know an age thing or like an age pancreas thing, I have found that it's sort of floating higher Even with like, when I'm sure I'm, and legitimately, perfectly executing a low carb diet, and it's higher than I would have, you know, not high like 121 3140. Like, I wouldn't see the numbers like that if I had everything else controlled, and yet, somehow I do. But then if I start running more frequently, it kind of goes back down. So there's all these variables.
And for the race, when there's so much that I can't control, I knew the Dexcom would be a CGM in general would be crucial. And having insulin available would be crucial. So I didn't want to go with an omni pod, because I got a couple of infections, actually, from the site, not saying that Omnipod, but just in general, like, I don't have a ton of body fat. And so like, I think there was just the wrong spot. And that can happen with any device. But for the race, I really want to do avoid that kind of thing. That's the sort of thing that could have actually put me out of the race, you know, if I had like a real infection, and so what I ended up bringing on the race was syringes, like old fashioned syringes with a vial of human slug. And the reason I went that route, actually, is because oh, no, I actually think that was just all I had at the time, because I had the syringes around for the token like a true diabetic. Yeah, I had the syringes and they were around from the Omnipod.
And then I have to include this, which I had forgotten about, but we were at the hotel ready to go, you know, we're not sure when this starts going to be. And I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There's one thing I didn't remember, it was in the fridge, it was lined up like little soldiers. So there was a whole production of gold, having someone having a production assistant go to Walgreens, like paying out of pocket, months later figuring out reimbursement. So that was it was a major part of preparing for the race.
Stacey Simms 27:05
Okay, I have to tell you, I have so many friends with so many stories of forgetting insulin and for getting supplies you have just made our day. So thank you for acknowledging that you're human. Oh, yeah, that's crazy. Oh, you went over here. So the other question was, this question kind of comes from the food? I thought I knew the answer this after all the years, but I wasn't sure. How do they feed you on the race? We see the crazy food contests. What are you eating day to day? And then the question was, how did you manage that?
Leo Brown 27:31
Yep. So I only ate in between legs. Mainly because I didn't want the distraction the production, the possible possibility of a higher low blood sugar during legs. Now keep in mind, I was not using a basal insulin at this point. And so I didn't really need to worry about my blood sugar floating low unless I had a short acting insulin in my system. And with the adrenaline happening during the race, I did not feel the need to be eating. And then in between legs, teams stay in a hotel, the race provides food. I'm being a little careful, because we're not supposed to talk too much about behind the scenes stuff. But what I'll say is that, you know, the food I would ask for I would eat what I could have it. And if I needed more, I would ask for more. That brings me to the topic of what I generally which is if you gave me a slice of pizza, I would eat only the top. In fact, that's a business idea that one of the other teams and I the blondes and I want to start pizza tops. I know we haven't made any progress on that. But like pizza tops, very delicious. Sometimes you can even find someone who's lactose intolerant, and you split the slice of pizza horizontally. So that's the kind of food strategy or trick I would use. There was food available to all the teams and sometimes I would have to ask for a little bit more to make sure that I can eat enough. Okay,
Stacey Simms 28:57
I am a Jewish mother. You were not super hungry during the race. I mean, again, I know we can't we have to be very careful. We don't know how far you got. We know you've got through episode one. But I'm thinking even an episode when you were swimming. You were running around or playing the drums. It's a long day. We don't have to eat a whole lot of adrenaline.
Leo Brown 29:16
And I you know, I always had a bar. I always had sugar tablets with me. So I should point that out. But you know, your heart's racing. You're competitive. Your adrenaline's high. And on that note, you're probably going to ask me about this. My blood sugar went high from that. Yeah, right. So like my blood sugar shoots up when I play coed softball in a league, you know, that I pay to be here. Right? Like it's not a competitive situation. But like, you know, The pitcher winds up. I'm at third base and like my heart's racing, and then I look at my Dexcom later and my but the first time this started happening, I was so confused. I know. I didn't eat anything like and yeah, so that happened a ton during the race to the point where I didn't Security actually said the security staff was who was really tasked with sort of keeping an eye on me from a medical perspective. And they, they would say, like, you can't let your blood sugar get that high. And I would say, well, like, Yeah. Like, what? Also what do you want me to do take insulin? Like, I don't think you want that. It'll go back down pretty quickly when I calm down, but right now, yeah, like, I've always found it's not worth trying to treat the adrenaline highs, because then I don't really under like, I can't do the same calculation around eating something like, How high is it gonna go? How excited was I? Like, how long will it last? Honestly, I've thought about trying to control that sort of thing through mindfulness, or meditation and sort of just like slowing down my adrenaline in general, although I don't want to change who I am as a person and you know, being hated about things. So that's a trade off, I guess.
Stacey Simms 30:55
Yeah, I think adrenaline highs from sports is just something that most people with diabetes that I know learn to figure out and kind of work around and not dose for, as I said, because you it's it's so tricky tolerate, um, time zones came up, too. But since you're not dosing basal insulin, that's not really a question, right? I mean, time zones, I assumed would affect you, but not really in the same way as someone was dancing that way. What
Leo Brown 31:17
Yeah, I didn't go space all during the race. And I think time zones affected all of us in an odd way. But, you know, we weren't sleeping in 24 hour cycles, we were sleeping during breaks between the legs, and the legs were not, you know, they didn't start when the sun came up, and when the sun went down, so yeah, I don't know. I mean, I think if I had been dosing basal, I would have had to just, you know, set a timer and decide that's when the next day began.
Stacey Simms 31:46
All right, any tricks and tips to keep your Dexcom on? Did it stay on in the water? Did it stay on with the sweat? And the reason the whole thing? That was what I was thinking about?
Leo Brown 31:54
Yeah, incredibly, it did. Since the race, I've gotten more experience with using the Dexcom and have started to use three M tape. And at this point, I just put it on preemptively. And aggressively. So it's like all over the site. I was, I think, kind of lucky during the race, the biggest issue I had with a Dexcom. And this gives you some insight into like the level of excitement and my state of mind was, at one point, we were on an airplane, and I was checking my blood sugar on, I actually was using, not my phone, but the little device that it comes with, because we didn't have our phones. So I was fiddling around with this device. And my mind's racing a mile a minute, right, like probably the entire race. I mean, to like, say, exit out of the part of the app that I'm in. And I decommission the sensor. Oh, no. Unlike the I was installing the sensor, no, I installed the sensor. And then I said the sensor is over right. Now, it is not possible to reverse that. And I was so distraught. And olana pointed out at that moment, that I had brought four sensors for 30 days, because I brought an extra and that was when I used the extra. At that point. I didn't have an extra. But at least I had that one. That was like, I don't know if there was a moment in the race when I was more horrified then when I installed Dexcom and then immediately decommissioned it.
Stacey Simms 33:32
Oh my gosh, yeah. I think a lot of us have done that. You guys were very early in your relationship, as you said. Very brave thing to do. exciting thing to do. Did you have fun? I mean, you're married.
Leo Brown 33:44
Yeah, we had a lot of fun on the race. It was also I will say a very stressful experience in general. You know, our first time on TV, you know, we really wanted to keep racing. You might have noticed in the first episode, we were on the second flight, we were in 10th place at a certain point, the oil drums were huge and hard to handle. The fish numbers challenge was horrible. Try remembering for numbers and the numbers were okay. But the colors. The problem with the colors is that what are you reading the fish nose to tail left to right, like you flip it over upside down? Right? It's sort of like you can reverse the fish in all different directions. And we were just like, really, things were not getting any easier. And then the skill drum challenge Fortunately, I felt pretty comfortable with so that was Trinidad and Tobago, and we had a blast, but we also had a lot of anxiety. You know, as far as our relationship, I think we kind of knew what we were getting into, in a way. I mean, I suppose it was more intense in many ways than you could have imagined. But we knew we wanted to do this big adventure like we knew it was a once in a lifetime opportunity. We wanted to travel we wanted to get to know each other. We wanted to get away from our jobs like It was a no brainer. And I think that our relationship from day one has always been that we want to do things together, and not like shy away from experiences. And we're just both wanting the same thing out of life in so many ways. And so it would have been against our nature to hesitate to do this thing together.
Stacey Simms 35:20
So this was taped in 2018. This is pre COVID. But this is a long time ago. How hard is it been? I mean, I don't know exactly when it wrapped up, or if you know, when it ramped up production. But how hard has it been for you guys to sit on this for all this time? You can't say anything?
Leo Brown 35:35
Yeah, it's been a big secret. And it's been a huge relief to share. We were able to share with close family, initially, MBAs, everything we couldn't share with work, we couldn't share with friends, we couldn't share it, my friend who was house sitting for us. And we have been able to stay in touch with the cast. We're really close with the rest of the cast. The fact that it took so long to air is I think part of that, like we've had a chance to see each other go through stages of life together. A couple of them were at our wedding, everyone else was live streamed into the wedding. So having the cast as sort of a support system through this has been really huge. It's just a Yeah, it's a huge relief to be able to share that. That's unbelievable. And I have to say, just watching the first episode, and I haven't watched the show in a few years. And now I'm back in I'm very excited. Good. But it was a joy. Great season. Well, I'm glad to hear it. But I gotta tell you, it was a joy to see travel. It was exciting to see the world again. escapist is voyeuristic. Yeah, it's, it's what we need right now. Of course, being able to see myself through those things is a trip and feel so great. But also, you know, just being able to see people interacting, like we used to, I'm sure there's going to be some airplane footage. The first episode was notably absent airplane footage, which I think everyone was sort of would you know, that's what you want to see right now is like everyone like squeezing onto a plane. But there will be some of that the carnival in Trinidad. Imagine, you know that today? You want to see that back to the way it was, when it can be. But yeah, I do think it's the perfect show to be airing at this time, unlike Big Brother, where you're locked in a house. And it's kind of the same as you know, you get everyone tested, and then you can be in the house. But the race is obviously the opposite. And we are we're all hoping they'll be able to you know, keep running it again soon. You know,
Stacey Simms 37:39
I I would like to know, and I, again, I've watched the show for 19 years, you know, what's the crew? Like? What's it like traveling with those other people that we never see?
Leo Brown 37:48
Yeah, first of all, the crew is many in number. And they're an integral part of the experience. They are supportive. They're excited to be there. They do incredible physical things with you know, 50 pounds of equipment, trying to keep up with us. We're trying to go as fast as we can. And then they're, you know, jogging alongside us. They haven't a job that is would have been hard to imagine. I mean, now I've kind of seen them do it. But you know, they travel around the world. A lot of them work on other shows. Some of them have been doing the race since the beginning. And now we follow a bunch of them on Instagram, and they all post great photos of their non office jobs. Like to them
Stacey Simms 38:28
you've got the goats, right, and you're running to the mat. Where are they? They're behind you. They're in front of you. They're trying not to get trampled by goats. I mean, it's got to be an incredible skill on their part to
Leo Brown 38:37
Yeah, so also keep in mind that there's equipment like drones that they can deploy. So generally speaking, 90% of the footage, I would think is from a person carrying a gigantic camera, just running around. But if you think about like the water challenges, actually, I think they've had cameras on boats, you know, I probably shouldn't get too into that. You'd probably just do drones. Yeah, sometimes it's
Stacey Simms 39:06
drones. And what's Phil like, Phil is nice. Don't tell me if Phil isn’t nice.
Leo Brown 39:10
No, feels great. Phil is just like he is on the show. Except if anything quicker wittier than you might expect, like none of it's scripted. As far as I know. He's really fun, really warm, and he wants us to do our best. You know, one thing I did want to ask before I let you go, I found you on Twitter because someone in the diabetes community was talking directly to you and saying, Hey, we watched the show. My daughter just got to Jack's calm and saw you with yours on TV and it made our night. You are while of unusual case in the diabetes community. You are in the community now. And I'm curious what that's like for you. When you see people reacting so positively and so excited to see you on the show. I was definitely surprised that people picked up on it right away.
You know, I didn't see the Dexcom in the episode. And it's an incredible feeling to have that be an inspiration for people. And I know how I felt when I was first diagnosed with diabetes. And I didn't know what I would be able to do, it took me some time to realize that I wasn't going to get a break from it. And to kind of there's the diagnosis, which was a relief, actually, because then I could do things that I wanted to be doing and thought I could be doing, I just, you know, they told me, I just have to do this and that, and then I can live my life. And then it was probably a couple months later, where it sort of hit me that, you know, I wouldn't be able to go back to the way it was before. And I remember my sister who's a couple years older, she was watching this happen. And I was a freshman in college, I just finished up freshman year of college. And I had to I realized, and especially because I was making such an effort to manage with diet, I realized like, I wouldn't be eating birthday cake, I wouldn't be eating a hot dog button. And the way she saw it was that I had to grow up really fast, because I have a sweet tooth. Like I love candy. And I don't eat cake. I mean, I eat dark, dark chocolate, but I don't eat candy. And oh, what I'm about to go make for myself after this interview is a hot chocolate, which is made of half and half and cocoa powder, no sugar, and I mix it together and I heat it up in a saucepan. And it gets like to be to me indistinguishable from like a chocolate syrup that I want to drink. But it's got no sugar. So I recommend that. Anyhow, I'm on a tangent. It's really exciting to me to be able to hopefully, give people who were in my shoes. I think the person who commented that was her daughter's first couple days with Dexcom. So I remember what that was like. And on one hand being really hopeful that I had a solution for myself. But on the other hand, accepting that, you know, there were real compromises. The solution was not one that I was always going to love. But for the race, those are solutions that helped me run the race. Yeah.
Stacey Simms 42:13
Well, I can't thank you enough for jumping on so quickly for sharing your story. And for being so open about everything. And thanks for hanging through the technical stuff, too. I appreciate.
Leo Brown 42:24
I think we got a lot I got us a Wi Fi upgrade in the course of this interview. So she's she's busy. Behind the Scenes love it.
Stacey Simms 42:32
Yeah, I appreciate you doing that so much. So look, we'll check in. We'll see how it goes. And maybe we'll follow up. But thanks again for spending so much time with me. Okay,
Leo Brown 42:42
thanks a lot, Stacey.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 42:55
More information on the foundation that Leo talked about. I will also link up stuff on hyperinsulinism. If you'd like to learn more, all of that at Diabetes connections.com. Click on the episode homepage where there is also a transcription and I'll put a link into the amazing race because they've got some cute behind the scenes videos each week. And oh my gosh, I hope they win. You know as we're taping this, the second episode hasn't even aired yet. So I don't know if they've made it to the third episode. And but you know how this works. You've been with me with other contestants. We've had people from the Titan games and from the baking shows the Food Network kids baking show, American Ninja Warrior, you know, the Christmas light. We've had people from all different reality shows and you never know but it's always great to talk to them and just making it to the show is a pretty incredible achievement way. I hope they went Tell me something good coming up in just a moment.
But first diabetes Connections is brought to you by Gvoke Hypo Penn 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 GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvoke 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 Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the Gvoke logo Gvoke should not be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon.com slash risk.
Tell me something good. This peak is full of weddings and babies and celebrations. Congratulations to so many people in the community who took a big step this month. Rob Howe got married in early October so congratulations to Rob and to Erica. Rob is the founder of diabetics doing things the host of that podcast and and so much more. It is Rob that he's my Instagram guru, but I'm so bad at Instagram. I once I think I once was it Rob I once called him through Facebook messaging or Instagram messaging, I don't even know. I don't know how I did it. He was so polite. He was so nice. I felt like I was 75 years old. It was, it was not great. But congratulations to rob and Erica, who had a beautiful backyard wedding, you know, as we have to do these days, we wish them many years of health and happiness.
Congratulations to Patrick Mertes, who had a baby with his beautiful wife, Patrick is one half of the team that made up 50 and 50. And these two guys who decided to go around the country last year, and climb the highest peak in all 50 states and try to do that in 50 days. And Patrick completed it Michael, his partner had an injury, halfway through and completed it. But later on, they did something else recently called race along the trace, which was three states. And 460 miles, it looks like a bike ride. He called it the last hurrah before fatherhood. So we'll we'll catch up with him and talk about that. But Patrick is also the director of the diabetes camp where my son goes every summer. So we are excited to see how a camp guy tackles fatherhood, I'm sure he's gonna do an amazing job because he's corralled all those kids for all those years.
And finally, congratulations to Ken Rodenheiser, who also had a baby in October. He's a pediatric CDE in Philadelphia, and I think it's at the hospital where he himself was diagnosed years ago. But he has been a very big part of the children with diabetes organization and the friends for life conference. I believe he leads the tween program there, Ken and I have gone back and forth for years about getting him on the show. And we will work it out very soon. But I just wanted to highlight him in this segment and say congratulations to him and his wife and their babies name is Elliot, this adorable little girl.
And I just realized as I'm reading this, I didn't put two and two together. But my next Tell me something good is also an Elliott. But this is Elliott Fry. He is the former kicker and all time leading scorer for the University of South Carolina, he lives with type one. And earlier this month, he kicked his first field goal in the NFL for the Atlanta Falcons in the Carolinas. Elliott is very well known for working with kids for being really out front with JDRF. And just being you know, out there as a great role model and example of somebody who plays sports and plays them at the highest level with type one. So it was really exciting to see him get that very first field goal in the NFL. And that's Tell me something good.
Do you have something for me send it my way, Stacey at Diabetes connections.com. You can also post in the Facebook group, you don't have to have a baby or get married. It can be as easy as your son or daughter did their first sight change, without crying and running away oh my goodness, that used to be such an ordeal with Benny, anything that feels momentous anything you want to celebrate with the diabetes community, I would really love to know about you can go ahead and tell me something good.
It's hard to believe that it's going to be November in a couple of days. And I know we're all stressed out about the election and the possible aftermath. But it's also diabetes Awareness Month. And I don't know how that's gonna get any play this year with everything else that's going on in the world. But I'm gonna try and I always say diabetes Awareness Month is for the non diabetes community. I mean, we're aware every day of the year, this is our chance to educate. So I have a few things in mind to try to get the word out in other media. And I won't be talking so much about that here. But I'll share if anything exciting happens. But I am going to be doing two different things. If you're on Instagram, I will be having a contest I'm probably gonna start that the second week of November because I want to get past this election to that's just going to be a fun giveaway, to celebrate each other to be part of diabetes awareness. It's going to be fun and easy. I have some great companies lined up already that want to donate stuff and give it to you. I mean, you work hard all year round. Let's celebrate a little bit.
And we have a big episode milestone, the numbers I'm so excited to share this with you. The second one is going to be on Facebook only. So we're going to have an Instagram only and a Facebook only. And the Facebook is going to be a little bit more work on your part. But the prize is going to be bigger, that one's going to be a cash prize. So I will keep you posted. The best way to keep track is to be in the Facebook group. Or to subscribe to the newsletter. If you're not already subscribed to go to Diabetes connections.com the cute little please sign up should pop up. But if it doesn't just scroll all the way to the bottom and you can sign up for the newsletter right there. So two contests coming up. I want to make it easy for you. I think it's gonna be fun. We just need a little brightness around here. And I hope I can provide some of that.
All right thank you to my editor John Bukenas from audio editing solutions. thank you as always for listening. 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 wrongs avenged
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.
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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
This week Ask the D-Moms is back, answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and Stacey both have backgrounds in professional news media. We’ll talk about medical studies, news sources and, community & social media info.
In Tell Me Something Good what do prescription swim goggles have to do with diabetes? Nothing really, but it ties into a new realty tv contest where we spotted a Dexcom.
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 Gvokek Hypo Pen 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, ask the D moms is back answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and I both have backgrounds in professional news media. We'll talk about news sources, medical studies. And as Moira touches on here, community info.
Moira McCarthy 0:47
When you're delving into that kind of anecdotal sharing, everyone is right, and everyone is wrong. Some things speak to some people and some things speak to others
Stacey Simms 0:59
in Tell me something good. What do prescription swim goggles have to do with diabetes? Nothing really. But it's all about a reality TV contestant you're gonna want to follow.
Welcome to another week of the show. I am so glad to have you along. I am excited about this episode I love every week, of course, this one where more and I get to break down from our personal experience, what we think of what's going on news business, how you can better use information. This is right in my wheelhouse. And it's one of the reasons why way back when I started this podcast,
hey, if you're new welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, almost 14 years ago. And it was really almost six years ago that I decided to start the podcast and did a lot of research. And it really took me until almost a year later to get it going. We started in June of 2015. But what brought me to start the show was that I listened to a lot of podcasts. I've listened to podcasts since I don't know 2005 2008 way back when when you had to actually plug your iPod into your computer and download the shows. And if you don't know that's where podcast comes from the actual iPod was the only device you could do it on way back when and I'm sure somebody with Android will correct me and it was all about mp3. But you know what I mean? That's where the word comes from.
But I would walk my dog and drive in my car and listen to shows with people who had incredible personal stories about diabetes. There were so many really good personal experience shows people talking about their diagnoses, just talking about day to day some technology stuff, but nothing that was a conversation that was from more of an informational standpoint. You know, it was basically nobody was asking the questions that I wanted to ask personally. And the great thing about podcasting is, if you don't hear what you want to hear, if you notice something is missing in the niche, or the community, you can jump in and start your own show, which is what I did. Of course along the way, I give you a little bit of personal information. Although the show is definitely not all about my family.
I have been mentioning lately that we were supposed to go see Benny's endocrinologist and we went in the beginning of October, then he had his lowest A1C ever, which is of course fabulous news. If you are new to the show, we started the control IQ system from Tandem in January. And we have watched him spend more time and range with less work all year long. It's really been amazing to see I give him a ton of credit. Of course, he still has to do a lot of hard work that goes along with it. He is far from perfect. God forbid I say nice things about Benny. But really, he's doing great, but it's still really is a lot of work. And you know, you have to wear all the devices. So I give him a lot of credit. I give all of you live with this an awful lot of credit, you know that. But boy, it's amazing to see that time and range go up, and the actual bolusing and the nagging for me down. It's been phenomenal. He also grew a little bit more, which makes him very excited because he is afraid he is done growing. Of course, he's been taller than me for a while now.
We also talked with the endo about insulin. And if you've been following on social media, or if you're in the Facebook group, you've seen me talking a little bit about this switchover, my insurance has us going from Humalog to Novolog. And I'm going to talk about that at a different episode. I did hint about that in the bonus episode I put out last week and I'm not trying to be cagey. But I want to give you the total context. There's a lot going on with this. And I want to make sure I get everything right and get all the ducks in a row before I tell you the whole story, which is a good segue into news and to sharing a good and accurate picture. So I promise more to come on our insulin front as soon as it all wraps up, fingers crossed. All right.
So with everything that's going on these days, I thought a show about news and information how to know whether your source is reliable. are worth listening to her, okay to ignore would be very timely. We're really only talking about diabetes news here. But that's almost more difficult because it's one of the few conditions that you can think of where we rely so much on community support and information from each other. Because we get so little time with health care professionals and diabetes is 24. Seven. And while so much of that peer to peer and community support is wonderful and helpful and is supportive, a lot of it is inaccurate or outdated, or it doesn't apply to you, or it is actually harmful. So we're going to talk about it. Of course here to join me on Ask the D moms, as always is Moira McCarthy, a fellow diabetes mom, of course, and a fellow news professional, if you are new, we will also tell you about our backgrounds and why the news media, which everybody hates right now is so important to us.
But first of 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 is the slickest 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 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 when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
Hey, Moira, it's always great to talk to you. How are you doing?
Moira McCarthy 6:39
I'm doing pretty well. It's always good to hear your voice how's things down in the warmer part of America, I am looking out at the beginning of foliage. And all day here in Massachusetts. I always
Stacey Simms 6:50
laugh because I am in Charlotte, North Carolina. Growing up in the New York area. I grew up just outside of New York City and spent a lot of time upstate New York. It's so funny here because there is beautiful foliage in places. But the season is so different. The first year we had kids and I wanted to go apple picking. I was all set in October. I was like cuz I spent you know, my childhood, going apple picking in October and the crunchy leaves and the crunchy apples. And they were like no, no, you have to go apple picking in August.
Moira McCarthy 7:16
Oh my gosh, that makes sense. Like that.
Stacey Simms 7:21
It is but it's gross. wants to sweat while you're picking apples. Yeah, no, no. But I'm glad New England must be beautiful.
Unknown Speaker 7:29
And as it's my
Moira McCarthy 7:32
favorite season, it's one of my favorite seasons I enjoy.
Stacey Simms 7:37
All right, so interesting topic this week. And we're gonna stick on one question pretty much the whole time here on the D mom's. And that's about news information, how we know kind of who to trust in this community? How do you know what information to trust? And before I ask the actual question, I think it's important to back up and kind of talk about our experience, because I think it's one of the reasons why we're friends. Moira, and I have an awful lot in common, including working in the news business more, take me through your your experience. But I mean, all kidding aside, you've been a journalist for many years.
Moira McCarthy 8:10
So it's funny you asked because I was visiting the Newseum, which was a wonderful Museum in Washington, DC that just closed down about the news industry. They have a whole of technology, like all the technology from the beginning of time, and I said somebody's daughter, oh my gosh, I'm so old. And I've been a journalist for so long that I've used three quarters of the hall of technology. But I am, you know, I just want to start with that. I think it's if it's okay, I think it's really good to kind of stick up for my profession right now. Because it's been a rough couple of years, I guess. Now I know what it's like to be a lawyer. You know, I've run you always say the lawyers were all liars. But um, journalism for people like me, is a vocation. It's what I always wanted to do. And when I went to college, I didn't just learn how to write, we learn how to it's called the canons of journalism. And we actually learned how to be responsible with our information and with our sources and everything else. And it's something that I carry with pride.
And I just want people to know that when you're dealing with true journalists, people who work in the field and we're trained in it, you really are dealing with people who are trying their best to give you you know, the truth. And in fact, so that's, that's just my little stick up for journalism thing, but I am, I was the editor of a group of 23 newspapers when I was about 21 years old. I went on to be a full time crime reporter and bureau chief for a daily newspaper for about 11 years. And then I went to work for the New York Times doing adventure travel, which I did for a good long time. And now I am the travel editor of a newspaper in Boston called the Boston Herald and I also do their ski section and it can be contributing editor and writer at ski magazine. But my new exciting thing is for about a year and a half now, I've been writing as a medical journalist for helpline media. So that's where my background is with a lot of other things in between. Yeah, tell us yours
Stacey Simms 10:14
Sure. And I will also stand up for my profession, by adding by adding that journalism is the only profession singled out in our country's constitution. It is an incredibly important part of our government, and country function. And my personal feeling, and you know, you can disagree with me on this, as you listen to more as well, is that most people who are angry at journalism are angry at talking heads and opinion pieces. And the line has just blurred because of 24, seven cable, and lots of other things and talk radio. It's just become a real mess, in terms of the definition of journalism is, is my feeling on that.
But I yeah, and I'm with you. I mean, when I was in college, we took communications law, we took lots and lots of classes on this. And I had some incredible news directors during my career. So I was a radio reporter. In college, I say I was the world's worst radio reporter. And I really was terrible, because they hired me, but didn't tell me how to do anything. So I drove around Central New York looking for stories. I mean, I was terrible. But I made it and I learned a lot. Then I spent 10 years in TV news and local TV news in upstate New York, and in Charlotte, North Carolina, where I am now. And then I spent 10 years doing news. And this was a really interesting job. I did a morning news show for a conservative talk radio station. So there was a firewall, you know, between the the news department and the talk part of the radio station. But as I said earlier, you know, I don't think a lot of people make those distinctions as they listen. And so it was a very interesting place to be. Let's put it that way. And then of course, for the last five years, I've done the podcast, which I've really tried to instill with those, you know, journalism, ethics and disclosures and all that stuff.
So that's our background, which is why I thought this is a perfect topic for ask the D moms. I don't know where this discussion is going to go. I'm excited to hear what you have to say Moira, I'm so excited to see or, you know, find out what listeners think. So let's jump in.
This was a question. I'm not going to read this person's name because I pulled it out of a Facebook group. But I think it's a fabulous question. This person says, My 12 year old was diagnosed last week, we are absolutely new to the world of T1D and my brain is seriously about to explode. I have no idea who to trust for information. Who do you trust? Any tips on how to navigate the flood of information out there? I've only been at this a few days. It seems like everything's a contradiction. Go low carb, don't go low carb. read this book. No, don't read this article. Read this instead. And she goes on and on about all of the contradictions in the community and I'll get to more of them. You know, CGM changed our lives CGM is too much hassle. Technology is great technology is terrible, he can do anything he is about to die. I mean, she really lays it out. All the things that you and I have kind of talked about for years. So I want to tackle this in a couple of ways. I want to tackle this in terms of reporting in the diabetes community and studies. And I want to tackle what people just say, right community advice. So let's start with the information. And I I'm glad you brought up Healthline, because you may know more about when this started. But Healthline has this really fantastic thing that where they put on the article, not just the author of the article, the journalists behind it, but they see fact
Unknown Speaker 13:38
Stacey Simms 13:40
Yeah, so somebody goes through all your stories,
Moira McCarthy 13:43
right, and and what people probably don't know is that that has been the case, every single place, I've worked for the 40 years that I've been a journalist and help one, I'm guessing, I probably should ask my boss for this, I'm guessing made the decision to highlight the fact checkers, for the readers peace of mind so that you can see there's a fact checker there. And then second, because they're becoming more and more important in this weird time and how journalism is evolving into, as you said, a little bit of a confusing thing. So I think that's why they put it right out there.
But I have always worked for quality publications, and every single thing I've ever written has always been edited, in fact checked. And I think that that's an important distinction for people to understand. And I can talk a little bit about how you can figure that out. Because one of the things you know, as a journalist and you'll agree with me, Stacey is everything ever written needs at least a second pair of eyes on it before it's published at least a second pair of eyes No matter how good you are as a journalist, you get fact checked and looked over by someone before it runs if you're Woodward and Bernstein you do and if you're me, you do now I think the blur comes a little bit in that blogs and ziens and other online things that may just be done by one person look the same on the internet, as the New York Times does or as the Hoboken journal does, whatever it is that you read, do you know what I'm saying? Yeah, yeah, it's a great point. It's a grand. So I'm not saying that people who write those kind of things aren't smart and and don't know, but that's actually not a full journalism, experience, for lack of a better word. And what I usually say to people is, when you're reading things, first of all, figure out what the sources you know, if if the name of the quote unquote publication, when you look at it online is like, I am smarter than you.com. It's probably not a really great source. But if you start to read something, and you feel like you'd like their boys, then that's a reason to read it. But understand that you're not dealing with full on journalism set up in the classic way back. Does that make sense?
Stacey Simms 16:19
Right back to my discussion with Moira. But first Diabetes Connections is brought to you by Gvoke Hypo Pen. 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 Hypo Pen comes in.Gvoke is the first auto injector to treat very low blood sugar Gvoke Hypo Pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy 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 comm slash risk.
Now back to Moira and me interesting timing. Following this endorsement, we move to talking about disclosures and commercials. But she left off asking me for last point about looking for clues in something as simple as a blog name made sense.
I think it does. I think it's great advice. It's also helpful when you're reading a blog or you're reading a personal new non-medical testimonial, something like that, that you also ask yourself the question. Are there disclosures on this website? In other words, if this is a blogger or a podcaster, you who are they sponsored by? And are they disclosing those sponsors? In other words, who is paying them? Just because this is a good example of this show, we take sponsorship and I talk about this all the time, whenever we have somebody on the show who is one of the sponsors, I disclose it again, and I talk about how Look, they're not paying for the content, they don't tell me what to ask, they're paying for the commercial, that sort of thing. But you know, as you listen to that that is happening. And so if you're on a blog, or you're on a podcast, and they're not disclosing who the sponsors are, that's a red flag, it's also really important in our community to kind of know what the person is using device wise. Because while that doesn't mean doesn't make them biased, it doesn't make them their information incorrect or wrong. It does influence how we live with type one, we all have our little fandoms. And I think it's really important to acknowledge that. So if you're hearing or reading some information, it's okay to question
Moira McCarthy 18:35
it is but to go backwards as a journalist, when I write for someone like helpline, or if I was, you know, when I write for a newspaper, whatever, that should matter, not one bit. In other words in in these things like podcasts and blogs and, and other things that are sort of, you know, it's a new world in a different way than then that does. But my job as a journalist, when I write for classic journalistic publications, is to not bring what my opinions are to the final product.
Stacey Simms 19:09
Absolutely. And that's, you know, we've already talked about blurring the lines here, when I'm speaking about disclosures, all that, look, if you're a journalist writing for health line writing for a magazine writing for newspaper, you shouldn't disclose your sponsors, because you shouldn't have any,
I don't have any
right. You know, to be clear, we were kind of talking about two different types of writing there. And that does make it confusing. Let's talk about reading studies. Because I think most people after they're in the diabetes community for a month, know to look past the headlines.
Moira McCarthy 19:42
Yeah. And even some of the studies I remember years ago, I don't remember what study there was that I don't even know if there was email, maybe email was new back then, and I emailed it to the Lauren's endocrinologist, and he called me up and he said, just so you know. person can create a study to prove and be successful that women who drive in red convertibles, when they're teenagers, at least once are more apt to have a child with diabetes. In other words, you can take anything and link it to something else and sort of prove it. So so what I always say to people and, and we maybe will talk to you about how you react when friends send you all those headlines that are not really true, because you sound like such an over when actually you are. So first of all, forget the headlines, read, read what it is. And then if you're reading a story about a study, you can almost always get your hands quite easily in the internet on the actual study, and read the actual study so that that's what I usually suggest. And anything that says, you know, cure diabetes in mice, my old story is when Lauren was very little, the movie, Stuart Little came out, and they gave all the money to JDRF the first night. So we went to a movie theater, opening to see it. And on the way home, my little daughter said, Oh, Mommy, I understand why Stuart Little wants to help diabetes, because he can be cured. He's a mouse.
Unknown Speaker 21:13
So So what I'm saying is,
Moira McCarthy 21:17
is read carefully and dig into it. And and my advice when friends send you articles about studies is just thank them. Like, you know, just say thank you so much. It's so interesting. And if they push further and say, why aren't you going to get back here? Then you can explain more. But I guess so I guess my advice on reading studies is actually read the studies, or at least the summary of the study,
Stacey Simms 21:40
get exactly the first thing I do. It's funny about Stewart little, the first thing I do, and I just saw study yesterday, but some like electromagnetic field, these researchers were so funny that the headline was like, we built a remote control to cure diabetes. And they were I'm laughing that they were funny. They were very young, which is what made me smile. So I think there was a college study or something. But I clicked on it to read more. And the first thing I did was scroll down. And of course it was in mice. And you know, nothing was proven. It was all correlation, not causation. And it was very interesting. But it wasn't, it didn't prove anything. And they may move into human trials someday.
So what I also talk about a lot is, and I've learned this over the years, which I find kind of disappointing, but also it's good to live in the real world, is to realize that, especially with a lot of companies, the marketing department can get ahead of itself can get ahead of the rest of the company. Yes. So sometimes they'll say something and make a big splash. And you know, a great example of this, and I'm so sad is Animas Corporation, that I loved Animas Corporation, part Johnson and Johnson, they made this wonderful insulin pump that my son used for 10 years. For years, they were talking about their hybrid closed loop, they seem to be ahead of everybody. And they were getting these incredible studies out of Europe. And it really looked terrific. And then of course, Johnson and Johnson closed up the whole company. And it never as far as I know, it never even got to trials in this country. So that was a lesson for me, unfortunately, in I mean, get excited, get optimistic, you know, let go, obviously great things are happening. But be careful about letting marketing get ahead of what's actually happening. And so when we're reading articles, we're reading studies, like you said, actually read the study is probably a really good way to go. And a good thing to point out too is I don't know about your experience. I have never written my own headline for anything. You never get to write your own headline,
Moira McCarthy 23:32
right? Oh, no. And and Healthline actually has a team that writes the headlines. Yeah. Like, that's their job. And I did you know, when I was an editor of a newspaper, I was, you know, oversaw the headline writers and everything, but I know, I don't write my own headline. Um, you know, I was just thinking to that this is kind of a good conversation to have right now. Because one of the reasons, you know, beyond being a medical journalist and covering it, but one of the reasons that I've been able to follow the vaccination news, with, with confidence, and what I understand and what I know I shouldn't care about is my experience all these years and reading studies and reacting to things that I hear about diabetes. So it's a good time for people to know how to dig deeper when they see a headline.
Stacey Simms 24:16
And you mean the COVID vaccine.
I do. Yeah.
This is a time when we need good health news.
Moira McCarthy 24:24
No, no, maybe that'll be one of the silver linings, people should know how to at least basically understand medical research of all different kinds. So understanding how to read about it. That may be a good thing that comes out of this. That's a really good point. Then, of course, there's the whole world of information that newly diagnosed families like this person whose question you read are thrown into now. And I want to tell you that my first advice when people Reach out to me, you know, connect me to a friend whose child was diagnosed her car is do not go on the internet for a while other than basics. And that's because it must come at you like this woman described like you're almost being assaulted with all these different things that completely conflict with each other. And I think that in the beginning, one of the reasons that I was able to build somewhat of a confident foundation for my family after my daughter was diagnosed 23 years ago, is that there was no internet. And so I read books, you know, Merck medical journal, and the Pink Panther book and things like that. But most of my information came from the most reliable source you can have. And that's a qualified medical team. And so before we talk a little more about, you know, how you figure out what's right, and what's wrong with people, I just want to say that it has to be incredibly difficult. And I actually strongly believe that that environment is one of the reasons that studies are now showing that parents are more concerned and more afraid than they were 20 years ago, I think it's the the overflow of information coming from every direction.
Stacey Simms 26:17
I agree. Oh, absolutely. It's, it's like, it's always like drinking from a firehose, when you learn about type one. But it has become, you know, like trying to drink the ocean. Because it's not just information from the medical community, it's, I'm going to put this in quotes. It's, quote, information, and judgmental advice from the community. What I tell people is, same thing as you try to stay off the internet, try to join a local group. Interestingly, this question was posted in one of the largest diabetes Facebook groups that I am in, and it is full of people at different stages and ages. And it's type one, kids and type Well, it's type one parents, you know, and adults with type one, it's just it's an enormous group. But it's funny when you mentioned staying off the internet for a little while, you know, I have an I promise, this is not a book promo. But with the world's worst diabetes Mom, I have a program called the book to clinic program, where I'm able to give pediatric endocrinologist to read the book and are okay with the worst, you know, the world's worst moniker, they can give it to families for free. And we've decided that it's probably not a great idea to give this to newly diagnosed families and to wait until at least three if not six months, in, not because the information is too complicated to comprehend. But because they're getting enough, they need to focus on insulin dosing, and checking blood sugar and getting routines in place. And then they can branch out more information and these other things that just come at them. I mean, we have a program here in Charlotte, where they put technology on these kids in the hospital. And I know everybody loves that. But then you come into my local Facebook group, and everybody doesn't love it, they are overwhelmed. And so
Moira McCarthy 28:02
another time, exactly. I was going to interrupt you when you're talking about your book and say, I want to suggest that you not give them to the give them out till three or six months after diagnosis, and you already are. So here's what I think. I think that when you're delving into that kind of anecdotal, sharing, everyone is right, and everyone is wrong. Because some things speak to some people and some things speak to others. And so my advice is, if you read something online, that makes you feel uncomfortable, or makes you feel judged, or makes you feel like you're doing it wrong, share exactly what you read with your medical team. Like say, I just want to run this by you when and and let's say it says I don't know I'm gonna make something up so that no one's offended by it. Let's say it says, You absolutely have to keep a pink bow on top of a helmet every day or your blood sugar is never going to be stable. So then you call your endo your CDE. Or you send them a note you say, Hey, I just sometime the spine because we don't have a pink bow on a helmet on our son. So can you let me know if this is true? And then they will say, either? Yes. I can't believe we haven't shared this with you. You need to do it or Now's not the time or pay no attention to this. Find the medical team you trust and let that be your true north
Stacey Simms 29:31
Yeah, right. Oh, without a doubt and I love love love that every everyone is right and everyone is wrong. Yeah, that I may have to put that on a bumper sticker to be able to offer stickers. Yes, it
Moira McCarthy 29:43
applies to much more than diabetes right now, doesn't it? But but so so what the way that I was already far into diabetes by the time Facebook and the internet existed, but I have a group of friends that I've made through that. And what I found was, you just sort of noticed these people That kind of fit in harmony with you, you know, and then you're like, Oh, I think I'll message them and see if we should be Facebook's Facebook friends. And then you figure out, you know, most of my, I have a diverse group of friends, but most of my very close diabetes mom, friends and adults with diabetes, subscribe to the same philosophy that I subscribed. And so I'm nada. Had my daughter on low carb through her childhood person. I don't have any problem with those people, they can do their own thing, but it wouldn't be someone who was really into that I'd probably be like, yeah, that might not be a good fit, just because, you know, yeah. And of course, you might like someone and they're funny and nice. You just disagree with their diabetes care, that's fine, too. But I guess what I'm saying is, don't take it all. So seriously, it is just boats shoot the breeze. It's anecdotal. You don't know there's this old New Yorker cartoon I love we should try to find it or in we should put it on my page. It's two dogs, and one of the dogs is on Facebook. And he's saying that the other dog The great thing about Facebook is no one knows your dog. And and what that means is you don't you don't know what's real, and what the whole story is behind that. For me, it was always everyone was always doing perfectly with their teenager except me. And he come to find out when you dig down that that's not really true. Most people struggle a little bit most years or don't do it some other time. And so, if I had, if I had Facebook back then which they didn't, and my daughter was struggling and I had gone on and all these people were just saying, you know, take her to take her to a dialysis center and show it to her, she'll, she'll change I might have bought into some of that, when it might not be what's best for my child. So again, my best advice with for anecdotal advice is they're all right, they're all wrong. Talk to your endocrinology team about what's right and wrong for your child or for your family.
Stacey Simms 32:06
I absolutely agree with that. And I always say, you know, we all parent in our own way. So we're going to parent with diabetes in our own way. There's only a couple rules, you know, put insulin in and know where your blood sugar is. Everything else is fair game. So if you you know, if you want to do a sleep over, and your friend on Facebook says that's the worst thing you could possibly do. It's okay to disagree. I think what happens sometimes, though, is people will post with such conviction, and such surety in their method that it comes across, like an information source. And I this might get uncomfortable, you're much nicer than I am with the pink bow on the helmet. I don't mind getting a little specific.
I'll talk I'll put some examples out, you know, when I when I do Diabetes Connections here on the podcast, if you're a longtime listener, you know, we have talked to people who manage diabetes in so many different ways, super low carb, you know, keto super athletes, super laid back. You know, we've had a lot of people on the show, and I try, you know, when I'm editorializing or sharing my experience, I really try to give a platform I mean, I'm not gonna put anybody out who's not safe. But or you know, who's i think is not reputable. But we do give a platform here for many different types of management.
And I'll give the example because I know they can take it the Mastering Diabetes guys, these are the guys, Moira I don’t know if you’re familiar with them, they have a book, they’re very popular. You see them they're holding like giant baskets of fruit. I'm not going to explain it well. But you can go back and listen to the episode or read their book, their whole thing is, if you eat tons of calories that come from fruit, tons of carbs that come from fruit, your insulin sensitivity will go down and you'll be able to eat enormous amount of food as long as you eat this type of food. And you can hear in the interview, I am having none of this, I can't imagine a more miserable way of living. It would never work for me. There are people who love it, who are happy with it and are thriving on it. So that's a bit of information in a way of living that I would suggest you as you listen, dismiss or embrace like Moira said, everybody's right. Everybody's wrong. That may work for some people. It doesn't mean it is factually the thing to do.
And I think that's what makes me crazy about this well meaning community, you may be great. At 85 you may be great setting your Dexcom alarm for your kid at 120 I can't think of a better way to ruin my relationship with my son. It would never work for me. I have friends who text their kids six times a day and they say they have a great relationship with their kid. Mazel Tov wonderful, never would work for us in a million years. That's the kind of stuff I'm talking about is contradiction. Well, because if it works for them, why wouldn't it work for us? Because it doesn't.
Moira McCarthy 34:54
So So advice that pops into my head is if someone says something to you on line like, you're harming your child, if you're not doing it this way, or I love my child enough to make this effort, maybe you don't, or ever, your child's going to have complications, I would shut that person down immediately. Because that's not a rational way to look at the diabetes sphere in general, because we are all so unique. And one of the things we know about diabetes is it's very individualized. It's one of the big challenges for it. So if someone if someone is writing something, or sharing something online with you, and they tell you that if you don't do it their way, you know, there's trouble, I would dismiss them immediately as as not a good source. Other than like, you know, I don't know, don't club baby seals, and don't, don't tie your children to the bumper and drive them full speed. I'm talking about semi reasonable things.
Of course, it makes me sad when I see certain groups who believe certain things, being aggressive about it, because I'm sure that it comes from the right place, and they feel like they found an answer. But they, they've only found an answer in this moment for themselves. They haven't found an answer for everyone in the world. They haven't even found the answer themselves forever. They don't know what's coming down the road. I'll share a funny story too, when you say about the other parent saying their kids are fine with it. When my daughter was a teenager, I said to her CDE one day, can you please tell me why every other 14 year old on earth with diabetes, A1C is like 6.9. And my daughter's isn't, and I'm struggling and no one else's. And the CDE said, because the rest of them are all lying. I know because I treat them. I can't tell you details, but trust me that they're not sharing. And you know what? That's not all wrong. It's not It's not that bad to put a rosy picture out for the world. But don't push it into advice and and be aware of that, too. Like, if someone tells you everything's perfect all the time, I would just be like, yeah, good for you, and then maybe cross them off your list. You know, because I don't know of a person who raised her child with diabetes, or who's had diabetes who does not have bumps in the road?
Stacey Simms 37:22
I can’t believe you would say that to my face.
Moira McCarthy 37:27
You the world's best diabetes mom, everybody else has problems with that just because you love anymore. If my daughter, she wouldn't have like spikes, post meals or have done phenomenon, right? You're
Stacey Simms 37:41
just gonna try harder. I would also add, and I do this, and I really have to stop because I'm on my phone way too much. You know, this this year, especially has just been difficult for people who enjoy information. But But I post all the time in diabetes groups, when I see something and in my group as well. Interesting, what's the source? You know? Or what? Where did you read that? Where did you find that out? And if they don't have one, then you know what, you can ignore it. You don't have to internalize it, you don't have to act on it. If someone posts something that just seems weird or off base or brand new, unless there's a source of study a medical professional behind it. Um, you know, I wouldn't recommend you fight. I mean, let's not get crazy. It's okay to walk away. It's not a real conversation. You know, you can you can say No, thank you. But I always ask for sources. And I've learned a lot from people posting the sources. I didn't realize that or people posting the source and saying, No, but you know, that that blogger was discredited A long time ago. So just, it's okay to ask for that. I think it's also a really good way to get more information.
Moira McCarthy 38:53
Yeah. It's also okay, that, lets say not just anecdotal, chatting back and forth. But if you read a blog, or you listen to a podcast that's giving medical advice, I think that it's perfectly fine to reach out to them and ask them what their medical background is. And if they don't have a medical background, then you really shouldn't take medical advice from I know, you know, hey, I want to just wrap back to the beginning because I just had an email come in, sorry, but while we're chatting, I'm I'm on a deadline. And it's from my boss said helpline, and it says, Hey, more your important formative story on Blank is on the site. Now, on advice of your fact checker, I took out the paragraph on the notion that blank blank while you did show us a study or two there are conflicting research on those points. It looks great without it so don't worry about it. So I think that shows that when you when that people should trust real news sources, that's what happens. You know, I researched I found studies but they researched a little further and found a Couple conflicting ones. Since we want to go with the story, we'll take out the studies that I did that I've got a good illustration, right?
Stacey Simms 40:07
I do. That's great. Thank you for sharing that. That's fantastic. Just came in. Oh, hot off the presses.
Unknown Speaker 40:15
Um, so Stacey, where are you traveling to to speak, he's coming
Unknown Speaker 40:21
out of the family room, I'm in the living room. Now, my
Stacey Simms 40:25
family will say, Oh, my gosh, I never took all the stuff off my calendar. So I was supposed to be all these places, you know, this month in the next couple of weeks that I'm like, gosh, I gotta take this off my calendar because it's
Unknown Speaker 40:38
Unknown Speaker 40:40
so I'm like, stop it. I'm not going there. But I did
Stacey Simms 40:43
go, Benny. And I went to the endocrinologist this morning. So actually put on real pants.
And they said and makeup.
Stacey Simms 40:52
Yeah, it was very funny. It was very funny makeup. I know. I know. I didn't mean but who puts lipstick on anywhere where he's wearing masks? No, it was great. It was great. And I did, I did get to ask our endo. I always have a list of questions even after all this time. And it's so great to have him as a resource. You know, to answer the questions. I mean, I know we're harping on it this whole time. But really, as you listen, and I think, you know, podcast listeners, you're We know you're smart. You're looking for information. share this with your friends, post this in Facebook groups where people are concerned about the information they're getting teach people, let's help each other be smarter. And fact check stuff about diabetes, because then there's so many we already we deal with it for people outside the community, we want to talk about okra and cinnamon. Right? We don't need to deal with nonsense within the community. We just want to help each other.
Moira McCarthy 41:41
Right. And and like I said in the beginning, I think this is a good time for us to talk about this because we all need going forward to know how to understand what is news, what is opinion, if you read a headline, how to dig down in it that, like you said so eloquently at the beginning. I mean, journalism is a pillar of American democracy. And I know it sounds all Whoa. But it really is true and, and weak. We journalists care about what we do. And we want people to be able to trust what they read. But unfortunately, the way the world is now that means the reader has to do a little more work.
Stacey Simms 42:21
Moira, thank you so much. As always enjoy your trip to the living room. Be careful. You know,
Moira McCarthy 42:25
I will I'll send you a postcard
Stacey Simms 42:27
navigate the traffic. And we'll talk again soon.
Unknown Speaker 42:31
All right, talk to you soon.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 42:44
How would you have answered that question from that Facebook group? What are your sources? What are your go to sources of information? I'm going to put that question in the Facebook group this week, because maybe we'll learn some new great ones. Maybe we'll learn about some pitfalls. I'm curious where you get your reliable information. And if there are people in the community as well, that we should be looking at that we haven't found so far. And if you have a question for ask the D mom's just a regular diabetes question, feel free to shoot me an email Stacey at Diabetes connections.com Moira, and I'd love to catch up with each other these quote unquote interviews usually go for about half an hour longer than what you hear because we spend the time catching up as well. It's amazing, isn't it? How many of us makes such good friends because of stupid diabetes? It's the only good thing that comes out of this condition.
Hey, tell me something good is coming up in just a moment. We're going to talk about the amazing race. One of my favorite shows the Diabetes Connections is brought to you by Dexcom. And when Benny was very little and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know what I mean? Right? They were poked so much. They were just full of little pinprick holes that you could really see when they got wet. He's 15. I don't see his hands much anymore. But at the end, oh, earlier this month, they always check his fingertips and it's amazing. We've been using Dexcom for almost seven years, and Benny's fingers look completely normal that I cannot believe it is such a visualization. I wish I'd taken a picture seven years ago. But you know the latest generation, the Dexcom G6 eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day in the past makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a glucose meter to make diabetes treatment decisions. Learn more go to Diabetes connections.com and click on the Dexcom logo.
In Tell me something good this week. If you are not already a fan of The Amazing Race, I think you're going to be quite soon. Now a couple of years ago I think it was 10 years ago a couple like it was yesterday. Nat Strand Dr. Nat strand won The Amazing Race. We've had her on the show before I've talked about this because the media Race is one of my favorite shows. I started watching it when I was pregnant with my daughter, Lea, who is going to be 19. A couple of weeks. I've been watching the show for a long time. I actually haven't seen it in a couple of years. But I just last week said, I gotta start watching again. Maybe I'll start from the beginning. I don't know if I want to do that, or where am I going to jump in? But I got my answer, because this season of The Amazing Race features somebody with diabetes. I was watching the promo. And you can see this little clip of Leo Brown, he's got a Dexcom on his stomach. He is part of the team with his girlfriend, Alana Folsom. Everybody in The Amazing Race gets little nicknames because there's teams have to sort of keep them straight. Because you don't know anybody's names. They always boil them down to the essence. So you know, baseball bros, brother and sister longtime dating, which is what Alana and Leo are. So here's a little clip of them talking about getting ready for the race.
We've investigated past participants on Instagram.
Leo has a manual transmission car which came in huge I think the main thing we've been doing is CrossFit.
Oh, we also did a ropes course basically for the last six months, it's been our primary activity trying to gain new skills.
Oh, we also got to buy prescription swim goggles or team
prescriptions from goggles. Realty.
Stacey Simms 46:26
I have reached out to Leo, I am really hoping that he will come on the show and talk about the experience. Because not only do I want to know about being a person with diabetes on an event like this, which Nat has shared before how she did it, but that was more than 10 years ago, and the technology has changed. So be fun to find out what what helped Leo and maybe what did not. I was also laughing because I saw the preview of the show. And DeAngelo Williams is on this season. Now I know maybe that doesn't mean anything to you, but I'm in the Charlotte North Carolina area. He's a former Carolina Panthers. But he's one of these community guys. Like even if you don't know football, you know, D'Angelo, it's gonna be a really fun season to watch. I haven't seen the first episode yet it aired out last week, as you are listening to this show. I don't know maybe they got voted off. Maybe D'Angelo got voted off as well. But I really hope I can get Leo on the show to talk about his experiences on The Amazing Race.
We are coming up on diabetes Awareness Month. And this is a year like no other Can I sound like every commercial you've ever seen. But I think this diabetes Awareness Month is going to be very different as well. We've got to get through the election before anybody's gonna pay attention to anything else. And I always say diabetes Awareness Month is for people outside of the community, not necessarily in I mean, you're kind of aware of diabetes already. So I'm going to be doing my usual news push to see if I can get some news out there to people who may need it and don't really understand about diabetes. But I'm also going to be doing a little something for us because boy, we need a little something. I'm going to be running a contest through the month of November. I've got some fun prizes. I've got some great companies, we just want to make you smile a little bit. So that will be going on in the Facebook group Diabetes Connections, the group and on my Instagram account over at Instagram. I'm just Stacey Simms, so follow me there or jump into the group. If you're not already there. We're going to have a good time. We're going to give away some stuff. And we're going to keep it kind of low key because I don't know that I have the wherewithal to keep it any other key right now.
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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
There's a new way to connect people with diabetes who take insulin with assistance programs. It's a new website from Beyond Type 1 and, of course, it's not without controversy. GetInsulin.org launched earlier this month, so we asked Thom Scher, the CEO of Beyond Type 1 to come on the podcast.
Thom explains what the website is all about, why they started it and how it works. He also answers our questions about why Beyond Type 1 accepts money from insulin makers, what that means for this program and why they teamed up with groups like the NAACP to get the word out.
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 Hypo Pen, 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
Welcome to a bonus episode of Diabetes Connections, I want to take some time and put this episode out quickly to talk about the new program from Beyond Type 1, get insulin.org if you are new to the show, I'm really glad you found us usually put the episodes out on a weekly basis. But sometimes we throw bonus episodes in here and there.
My son was diagnosed with Type One Diabetes right before he turned to almost 14 years ago. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast. And that's why this show has a little bit more of a newsy feel and newsy type feel than some of the other really wonderful diabetes podcasts that are out there.
Now earlier this month Beyond Type 1 launched a new program it is hosted at the website get insulin.org. They say this connects people with diabetes who take insulin to assistance programs and low cost solutions that match their unique situation. I was interested to learn more. And so I asked the CEO of Beyond Type 1 Thom Scher to come on. Now get insulin.org is kind of a clearing house. I will link up to it. Of course in the show notes.
The information has been out there for a while these are coupons and assistance programs from the major insulin manufacturers, the only insulin manufacturers geared for people in the United States. As you well know, it's a complex situation, there really is no easy way to find out exactly what you qualify for, you know where to start. And that's what this aims to do a lot of strong feelings online. And in real life when this program was announced, many people upset that Beyond Type 1 does take money from the insulin makers, and that they have taken money and are putting the logos of the insulin makers on this website as well. Of course, I talked to Thom all about that.
If you are looking for this information, and you want the coupons you'd like to go through and see I can tell you before this interview begins, it really is a comprehensive website to help you find what you are eligible for. So go ahead if you're looking go to get insulin org and check it out yourself. I also need to mention the sound is just a little bit off on this interview on Thom's and it sounds a little bit metallic. And long story short, that is my fault. My technical error, but it shouldn't keep you from understanding anything. It just might be a little bit distracting at first, and I apologize for that. Here is my interview with the CEO of Beyond Type 1. Thom Scher. Thom, thank you so much for joining me. I appreciate you making time to talk about this.
Thom Scher 2:54
I am thrilled to be on Stacey, anytime I get to be on your podcast. It's a good day. Oh, thank you.
Stacey Simms 3:00
When we last talked, and I believe that was around the time of the partnership with jdrf. When that was announced, you're already talking then about trying to do something about insulin access. So tell me a little bit about what get insulin org is all about?
Thom Scher 3:16
Yeah, get insulin.org was probably born right around that time. Actually, it was it was over a year ago that we started talking about it. And really what we set out to do was build a one stop tool that could get people to the right resources for them available today. And that's not only urgent resources, in terms of emergency need less than seven day kind of need. But it really allowed people to get cusThom action plans that were based on their individual circumstances. So things like income, prescription location, insurance type. And rather than get them a list of what is the frankly messy, messy web of a lot of different options, they get the options that are actually specific to their circumstances. And we set out to build that and have it be a relatively easy to use and friendly tool for people that are in that situation, which we know is frankly far too many people.
Stacey Simms 4:11
So how does it work? I mean, I'm it's easy to see you can get on it and click around but I'm curious to hear your words. How do you explain it? What will people find?
Thom Scher 4:18
At its core, what we ask of you is a very small subset of information out of the gate, I believe it asks you for zip code, it asks you for what specific insulin you're on both brand and depending maybe the product itself and or vial, etc. And then asks you what insurance type you're on. And at that point, the system starts to essentially tree out. So if you're on commercial insurance, and for example, on certain products from certain manufacturers, we're good. We'd have all the information we needed that point to tell you, for example, a copay card could be eligible for you based on what you've told us. If you say you're on Medicare, we're probably going to need additional income elements we may need to know if you're on no interest. Whether you were laid off as a result of COVID, those kind of questions come up in the flow as we work to essentially filter out the things that aren't relevant to you. So what you get at the end is just the specific programs that are relevant to you, I want to be clear, we're not acting as an actual Assistance Program, what we're doing is essentially eliminating the guesswork that's gone in for far too many people in this at that point, in time of not knowing which programs they should be going to in the first place. This project was born out of stories about just that, where we hear, frankly, these harrowing stories of people taking a day off of work, going into a clinic being told there might be a program available to them filling out an application having extension only to then be rejected, not knowing that it's because they'd applied to the wrong manufacturer or the wrong program within a manufacturer not knowing that they were actually being Medicaid eligible, those kinds of problems, and they kept happening. And for me, that's an awareness and routing issue. And I want to sort of double down this is far from systemic reform here that we're talking about. But what it's doing is offering a tool to those patients, and frankly, the providers that are helping them ensure that they're getting to the right place out of the gate.
Stacey Simms 6:20
So it's like a clearing house. You know, we've seen those piecemeal posts here and there Lilly has this, you know, novo has this you can apply if you've lost your job. This is a place where you go and put a little bit of information in and narrow it down through all of the assistance programs.
Thom Scher 6:36
Yes, so it includes programs from Lily violin, Novo Nordisk, and Santa Fe, as well as various government assistance options, in particular your state Medicaid programs, as well as Medicare information and chip information depending on state. And all of that is essentially aggregated. It also includes patient assistance programs and commercial programs. So that includes things ranging from copay cards on the commercial side, for example, or cash programs, and also the actual patient assistance programs. And that's important, because it's another area where patients have friction point. Because, as we all know, if you call the lily solution seller, they can't help you with your Novo Nordisk product. At the same time, if you apply to the Lilly cares patient Assistance Program, you may not be getting information about what you couldn't be getting from the commercial side, there are all sorts of bright lines that, frankly, are set up for regulatory reasons. And that's fine. But by injecting a nonprofit in between, we were able to create a one stop clearing house as you put it, and that's a really good way of thinking about it.
Stacey Simms 7:42
What happens to the information that I put in to be on type one,
Thom Scher 7:45
if you vanishes, it vanishes, it vanishes. Stacey, it's a great question. It's plastered all over the site, because we get it a lot. Everything you're inputting is done browser side, nothing ever communicates to our server with the exception being at the end if you decide to email the substance of it to yourself. And at that point, we use it for very strict purposes. And that is to send it to you and then purge it off of our servers as well. So we're only looking at the data in aggregate traffic location of that traffic, and then generation of action plans. So the number of people that are actually getting to an action plan itself. But outside of that we don't retain any of that information. It's actually a real point of concern, in particular, for often the people who need these programs most it's also a fear that we're just passing marketing information, for example, along to a manufacturer and we're very much not,
Stacey Simms 8:37
I'm curious about how the conversations went, because I imagine there were some people in the room who were like, We need this, we got to capture this information, because that's what everybody does on the web, right? I mean, you know, when I put out my book, I was shocked when my website, people were like, Oh, you got to capture every person who buys it does this and you know, people opt in, but at the same time, it's stunning how much information you can capture, if you want to, can you give us a peek into those conversations?
Thom Scher 9:01
Yeah, I think that there's always a give and take in those conversations. And for me, it stems from the goal of what we were trying to accomplish seamless, rapid information to actual people in need. And in that case, I don't need to capture that information. And in fact, I don't want to, they can slow the process down. And frankly, it adds a layer of this sort of thing is some kind of weird marketing output that was never really meant to be the entire premise at the get go was, look, there are people who don't know what options are available to them. And this is for them, at the end of the line are real people do not know which programs are available to them. And I want to add, it's unfortunate that that's the reality here. It shouldn't be on individual people to have the level of health literacy required to navigate the system. But that's the system we're in. And if we can reduce any of that burden, then that was the goal at the outset. And so I think the really honest answer to your question is I had no tolerance for those conversations. In the early days, when we started building this thing
Stacey Simms 10:05
I have to ask you about the elephant in the room, which is, and we've already seen criticism online and elsewhere, that there is money changing hands here, that Beyond Type 1 is taking money from the insulin manufacturers to put this site up to drive people to the insulin manufacturers, to be very clear, what is the relationship did the insulin makers give money to have their their logos and their websites as part of this, and separately, to acknowledge that you've been on type one has taken money from these manufacturers in the past.
Thom Scher 10:35
So first off, yes, we've taken money from the insulin manufacturers, it's disclosed on our funding model page. And we're clear about that. And what I maintain high degrees of transparency on it right on the top of the website, on the website, if you get there, it's on the homepage, it says it was funded by the four manufacturers, you know, this kind of a project is complex. And frankly, having that many manufacturers on a mass catalog with the partners of sorts that we do is a hard set of cats to herd anyway. But in this set of instances, what we needed was funding in order to be able to build the second or maintain the sun in order to get awareness out about the site. And the tool itself is pretty powerful on the back end. And I'd love to get into that a little bit more. But in terms of what it can do moving forward, because there's a lot more that I think we're going to be able to do with it. The other thing, though, is that we frankly, needed a working relationship with the manufacturers, in order to understand the nature of some of these programs really get a look under the hood at all of the edge cases, all of the one off instances in one off states where there have been for example, copay caps passed or various laws have changed the eligibility of programs understand the dates when those programs reset annually understand changes in eligibility to them and build a working relationship that will allow us to also maintain that accuracy on the site itself, so that we're directing people to the right places, you know, this information, one of the critiques has been it was publicly available. And there were a number of organizations that had big lists, we were one of them Beyond Type 1.org. Slash get dash insulin for the last couple of years has aggregated this kind of information. But what it hasn't done is have the degree of eligibility copywriting that you've described as Clearinghouse, rightfully so that this tool does, we're really able to get in there and say, Hey, based on what you've told us, we believe you're eligible for this program, you're gonna have to go to the program to confirm that. But that is so much more effective, having been able to actually work with the manufacturers themselves, and have that working relationship to not only ensure accuracy at launch, the accuracy and awareness of the tool moving forward.
Stacey Simms 12:44
I think there are some people in the community though, who would say we shouldn't be working with the insulin manufacturers, we should only be fighting with the insulin manufacturers, because the prices are so outrageous. And the situation is so dire. Obviously you disagree with that. Can you address that? Yeah, I think it's right,
Thom Scher 13:03
for patient advocates to question the relationships held by patient advocates, you're so friendly advocates anywhere, I don't think that's a bad thing at all. And I respect whose view is that you shouldn't be working with insulin manufacturers in the diabetes space. I do disagree. I think that it's important for us to have a working relationship, not only to be able to fund critical projects that can have a meaningful difference in people's lives. But in addition to that, to have a working relationship and a seat at the table to help drive change for work. You know, I think that some of this critique comes down to if we're working with them when we critique that, you know, I mean, at launch of this, we also published an open letter of sorts from me where I'm very direct that I believe it's unacceptable to see less prices having rose in the way they have, I'm very direct, but I think it's unacceptable to see rationing where it is, it's unacceptable to have the rebate system how it is. But none of that, for me, Trump's, what is the importance of getting this out to the people who need it and having the support to be able to do that. And I'll add on this, Stacey, you don't watch something like this in this day and age with insulin manufacturers about insulin and not know that that critique is coming. We of course knew that critique was coming. We launched this in spite of that knowledge, because we believe that downstream are actual people who need the tool. And that came out over and over again, over the course of building it has come out over and over again, Since launching it in no way means we're giving up on the upstream fight. And in fact that upstream fight is a much harder, much longer road. And it's a road that we absolutely believe in. We believe it definitely needs to happen. But it's not as simple as asking for list price to simply be lowered. In fact, there's quite a robust set of evidence out to the contrary of that. So I respect that view. But I disagree with that.
Stacey Simms 14:57
I'm curious, we're talking really days after this as long Have you heard from people that it's helped?
Thom Scher 15:02
Yeah, I have a member of my team said to me when we launched, and it's some of the most sage advice that was given about this, that launch day was going to be about hotcakes, we were going to see hotcakes from people that were critical of it, we were going to see hotcakes from people that really thought it was impactful, we were going to see patients stories about these programs working or not working for them, we were going to see industry leaders and sort of key thought leaders having strong opinions about one way or another. And then at the end of the day, none of that really mattered compared to the stories that we hoped would emerge about people actually using it. And we're starting to get some of those stories. And I, I was just reading one of my inbox from a partner at an org who sent us that they had walked somebody through it over the phone. And that they they'd gotten a phone call asking for help, and that they take them to the site and walk them through it, that it worked for them. We also had a conversation with them. We're doing some work with Dr. Dan Peters, on our leadership council. And she just had glowing things to say about its use case in clinic. And we saw a lot of that kind of commentary that this is going to be a really powerful tool for providers to be there. And so yes, I think you know, Far too often in the diabetes space, I think we get lost in some of the the higher level talking points about why and how we're operating and whatnot, when all the way downstream or just people trying to frankly, manage their diabetes, live the best lives that they can and get through the day sometimes. And that's a huge volume of people. And I think this tool more than anything is for them not for the hotcakes by myself or you or Twitter or industry kind of none of that matters to me by comparison to whether or not people are actually using it. And
Stacey Simms 16:42
curious to it also says in partnership with some groups that I'm familiar with. But I haven't seen in conjunction with diabetes issues before Feeding America, the n double A CP, the National Hispanic Medical Association, tell me a little bit about reaching out to those groups and why it was important that they get on board with something like this,
Thom Scher 16:58
it's critical to me, it spoke to what we were trying to do. I remember the Feeding America conversation really clearly the first one that we had with them, and they're phenomenal partners. And we're going to one of the things I'm really excited about with the tool is that we're going to add some food security information in terms of how to find local food banks that's based on some of the information that we're getting that's coming likely in the next week or two. With Feeding America. You know, one of the critiques that I think is so often dead on when we talk about helping those who need the help most is that people say well look, doing Facebook posts about Insulet affordability isn't really helping those that are sitting at a pharmacy counter somewhere not understanding how they're going to pay for insulin, not knowing what options are available to that Feeding America is on the front lines of the equivalent of that when it comes to food security. And they know what so many of those community health scrolls really look like they had tremendous insight for us into how we built this, how to get it out. And it gives us a direct mechanism to drive awareness of the tool in groups that may have outsize to me need these underserved communities. And definitely sick he is the same way NAACP has a robust health arm, and they think about the best way to serve those who need support. And you know, they obviously deal with that through various lenses. But we were honored to have their support and they and NHS and Feeding America, I think it speaks to the idea that this issue is one that, frankly, transcends the diabetes clumber station. This is so often about the people who are impacted by diabetes, who aren't part of those online conversations. They're not part of Camp set events and summits in the life. But they're absolutely impacted by the disease. Yeah,
Stacey Simms 18:43
I worry about that too, to be frank with you. Because you know, my podcast audience, as you listen to this podcast, you know, these are some of the most well informed, most engaged, these are people who may have the time to listen to a podcast who know where to find information. So to hear this, this push to try to get this info to people who might not be on Facebook, listening to podcasts, that just makes a lot of sense to.
Thom Scher 19:05
Yeah, look, I also will add here I could be asked for your listeners isn't that they perhaps need it. Although I encourage them go play around with the tool, see what it gives you let us know if you see anything that we can do to improve. But more than that, it's about sharing it. And I think some of the things that our team has been most touched by have been people who shared it with even the equivalent of, Hey, I may or may not support Beyond Type 1, I may or may not need this tool myself, I certainly don't believe that this tool should have to exist in the first place. But I acknowledge that it needs to. And there might be people who follow me, there might be people in my network who do need this tool. And so I'm getting it out there for them. And that resonates with me so much because it's the only way that you can get necessarily the people who really need it is through conversations like that, partnering with those on the ground that are really doing it and making sure that it's getting into that hands of the people that are actually not only using it, but working with the people who are using it.
Stacey Simms 20:05
I like that idea too of sharing it with the physician sharing it with your endo, or your general practitioner who may not know anything about Beyond Type 1 at this point. And then to have this for other people who may need it as well.
Thom Scher 20:15
Yeah, you know, Stacey, I'll add to on that there's a reason why we housed it at get insulin.org. It's not some brand play for Beyond Type 1. I think that for us, if this was some kind of traffic play of the like, like, sure those critiques are a lot more appropriate if we'd launched something and driven a ton of traffic to the Beyond Type 1 site with a bunch of click through now, now isn't what we did here. We tried to build this thing. So it could be standalone independent with a strong coalition of both diabetes and non diabetes partners. And frankly, a ton of touch points offline, to ensure that this gets out there, which we're doing. I'm doing this podcast, but there's also radio ads happen in certain places and digital marketing happening in certain places. Yeah, we're doing a lot of targeted work over the course of this quarter and into 2021. To make sure that this is getting to the right places, we just sent print versions of awareness materials to a ton of clinics. So this has a lot of tentacles that bring that we haven't talked about a ton. Because it's all part of what is a much bigger strategy around how to ensure that this gets out there to the right people. And the diabetes audience that you have is a core part of that course.
Stacey Simms 21:23
Thom, before I let you go, and you may not be able to answer this, and that is fine. You know, we're talking at kind of the peak of this incredibly historic, bizarre, I don't know what kind of words you want to use to describe it election year. I know, I'm not gonna ask about politics, don't worry. But I am curious, are you optimistic that we're going to see a progress on actual insulin pricing and changes? I feel like the last couple of years, even with the hot takes, as you say, there does seem to be a groundswell of if that support, maybe just better education among the public. I'm a little bit more optimistic than I used to be. And I'm curious if if you are
Thom Scher 22:00
no, Stacey, I don't know what you're talking about. There's an election and 2020 has things going on that are crazy. I, I am optimistic. Look, I think the reality here is that the system is very broken. And we all know the system is very broken. The unfortunate reality about diabetes is that it's not that it's diabetes broken. It's that diabetes is the poster child for how broken the system is. And that means that we believe the answer to that is regulatory reform. It's it's actual legislation, federal and state. I agree. There's been a groundswell. And I credit grassroots activists that I credit the work of number of organizations for that I credit a handful of politicians on both sides who've done work on this arena. But we are hopeful. I think that we're starting to see policy proposals that make sense that are gaining traction. Do I think we're going to have it immediately, you know, all of a sudden, on one day, no, I think this is going to take time. But I think we all know that with time, this issue is going to only get worse, unless more is done. So I am optimistic despite what is a relatively sad view on the reality in terms of the state of affairs.
Stacey Simms 23:11
Well, thank you so much for joining me to explain this. I appreciate it. And you know, we'll check back we'll see how things are going. And I do appreciate you taking the time to address the criticism and explain the program. Thanks, Thom.
Unknown Speaker 23:26
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 23:32
As I mentioned, of course, we are linking up at Diabetes connections.com in the show notes, and there's a transcript there, by the way, as well. We do a transcript for every episode in 2020. And I hope to kind of go back and put more in. I've been doing this show for more than five years and more than 300 episodes. So there's a lot of transcripts to go back.
But I think it's really important that you get this information and that if you need the assistance that you get it, I would love to know what you think now that you've heard Thom speak out, I'm sure many of you are still quite upset he addressed the issue about taking money from the insulin makers doesn't mean that you have to agree with it. But I'm glad that he came on and explained the stance of Beyond Type 1.
I also want to add that I'm going to be doing an episode or social media post or something to get some information out. So as they say, watch this space, because I have a personal story. And I have a friend with a personal story. And we are both going through some difficulties using specifically Not a single amount but whatever the Lilly coupons. And as we are navigating through this, I am kind of waiting for the situation to resolve to share the information and what we've learned with you. So I really hope to bring that to you within the next week. But I will say there were two separate issues here. One, the annual cap that Lilly has that all the manufacturers have and how to get around that. And the second is why would it be difficult to use the Lilly coupon when you have commercial insurance if it tells you that you can. So there's a lot going on.
Anyway, more information as always At Diabetes connections.com Follow us in the Facebook group at Diabetes Connections the group or on social media me Stacey Simms, and I'll keep you posted on those two personal stories, one of which is my own story about using those lovely coupons.
Stacey Simms 25:13
Thank you to my editor John Bukenas from audio editing solutions. Thank you very much for listening. We will be back here on Tuesday with our regularly scheduled episodes. I will see you then, until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Linda Franklin is one of the strongest people we know - and we mean that literally! She holds world records for power lifting and has ranked at an elite national level for cross fit. Linda was diagnosed with type 1 at age 26 and reveals she struggled with management until she found her community. You may know Linda from the amazing Facebook group, Type 1 Diabetic Athletes
In Tell Me Something Good, the dedication of a dad.
Innovations this week has an update on the longest wear CGM yet.
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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, Linda Franklin is a world record holder for powerlifting diagnosed with type one at age 26. She's in her early 60s and at an elite level, but she says she really struggled with management until she finally met somebody else with T1D, who shared her passions.
Linda Franklin 0:46
And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time when I met him. It was really an eye opener for him and meat. We were just so excited to talk to each other about things,
Stacey Simms 1:00
Linda and that friend Daniel went on to create a now well respected and very large Facebook group for athletes with diabetes. We'll hear more of Linda's story and get some great advice about fitness and type one
in tell me something good. The dedication of a dad and in Innovations an update on the longest wear CGM yet
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'm your host, Stacey Simms, and I'm really glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection.
I don't know about you, I am on the edge. What a stressful time. I mean, this year has already been bonkers. I find myself, as they say, Doom-scrolling through Twitter, I was already on my phone way too much before this year. And it's just multiplied to the nth degree. Now, don't worry, I'm not going to talk politics here. This is not the place for that you do not come here. I am sure to talk politics. And if we were going to have a show about that, because let's face it, sometimes there are issues you would know before you heard me start talking. This is not that. But I do think it's important to acknowledge that politics is exhausting us.
Everything is exhausting us right now. And I thought it would just take a minute to share with something that is really helping me. And maybe you have your own version of this. Maybe I'll put this in the Facebook group when this episode comes out. And it's Diabetes Connections of the group. I really hope you can join us on Facebook. It's such a great group of super smart, wonderful people. But what's helping me is another podcast. It is pop culture, happy hour. It's an NPR podcast. It's been going on for years and years. I think they just celebrated their 10 year anniversary. And they just talk about pop culture for 20 or 30 minutes. It's fun, it's distracting. And what I have been doing lately because I just found this podcast this year. So there's a huge back catalogue to me. I'm going back and listening to podcasts from 2016 2018. You know, I'm listening to them talk about movies, and TV shows and things that were popular in the news a long time ago. And you know what? It's a great distraction, and it gives my brain a break. So I know you come here for diabetes news and not necessarily weird podcast recommendations. But man that is really helping me right now. Along with walking my dog.
Maybe I should give a little nod to fitness since that was what we're talking about. Actually this episode. You know, I live in the Carolinas. I live in Charlotte, North Carolina. We're so lucky. We live near a Greenway and the weather is generally pretty nice. So I have been able to walk my dog almost every single day. She's actually right here under the table as I tape. She's usually pretty quiet and when she's not, We edit that out. But my dog's name is Freckles. She's not very friendly. She likes us but she hasn't met anybody else that she likes yet. Except maybe my dad. He does like when grandpa comes to visit because he also walks her every single day. But man, she's an interesting character.
Anyway, we will get to Linda Franklin. That's why you're here. Linda Franklin, who is an amazing, amazing story, not just for her dedication to fitness and her passion for it her world records in powerlifting but her diagnosis story and what she found inspiring early on, and a teenage Bret Michaels how he makes an appearance. So we got a lot to talk about. But first diabetes Connections is brought to you by One Drop.
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Like many of you, when I have question about sports and diabetes, mostly about my son, I head over to the type one diabetic athletes group. It is one of the biggest Facebook groups there is. But it's also largely drama free and full of support. My guest this week is a big reason why she didn't start the group. You'll hear more about that in our interview. But she is an inspiring and I think larger than life personality, who challenges us each week with flex Friday and other fun posts. Linda Franklin is a world record holder in powerlifting. And before that, she placed 14th Worldwide in the 2014 CrossFit open this interview was conducted live in that Facebook group, you can watch it there it's recorded and then playback in the group. Or you can see it on our YouTube channel Diabetes Connections over on YouTube, I will link all of that up in the episode homepage as usual, at Diabetes connections.com It was great to talk to Linda here is our interview.
We don't normally take like this and who the heck knows how it's gonna go. But she's been such a great sport. And I'm so excited to welcome my guest someone a lot of you know quite a bit about but some of you may not and boy but a story. Linda Franklin, thank you very much for letting me in the group and agreeing to do this and fingers crossed, it all works out.
Linda Franklin 6:22
Yeah, it will.
Stacey Simms 6:23
Let's jump right in. Because this is a group for and about athletes. And I joined this group because of my son, who was a type one. And he's played a billion different sports. Most recently, he's more interested in wrestling. But I'm just so impressed with the amount of knowledge in this group. Do you mind just sharing how the group itself came to be? Sure.
Linda Franklin 6:46
So Daniel Borba, who has been a lot a little inactive lately, because he's expecting his second child, which is super exciting. But I met him back in 2013, my brother said called me and said, hey, there's a type one diabetic in my gym, my brother on the CrossFit box. And we were both so excited because he knew I didn't know anybody. And so I met Daniel, we did a little tiny podcast that just disappeared, you know, was wasn't much of anything, but it was so great to get to know him. And he'd been thinking about exercising and not there just wasn't much knowledge out there for how to control blood sugars, exercise, being type one, taking insulin, it's very complicated. So he just got decided to start this group and invited me and here we are. This was seven years ago from June, and it's blown up. Well, unfortunately.
Stacey Simms 7:44
Yeah. Well, I mean, there's good and bad, right?
Linda Franklin 7:47
Stacey Simms 7:48
talk about the good and a little bit. I mean, we're gonna talk about your story and all of your incredible accomplishments. But I'm really curious seven years ago, and that's about when I started my local Facebook group to the diabetes community was interested in in kind of different things. The technology has changed. Now the knowledge has changed. Do you remember the first kind of questions people had I imagined it was just how do I work out without crashing?
Linda Franklin 8:11
It was very small. We were like 300. To begin with, I would say for the first year, three to 500 people. So it got to be very intimate. And as the group grows, larger, questions become more voluminous. And you can start categorizing everything. But at first it was Yes, that was a big, big problem, or spike, what a really big problem was because it was really based around CrossFit to begin with was the spike after exercise. That was a huge, huge problem. And for me, too, because I was doing CrossFit at the time. And it was a that crashing and spiking after exercise was a big, big issue in the group, how to eat before you get started and when and how much and how much protein and I could go on?
Stacey Simms 8:57
Well, I'm gonna ask you to so I made a note of that, because I think it would be great to get some of your advice a little bit later on. But you said CrossFit, now I'm looking at your bio, and I don't even know where to start your soccer CrossFit world record holder now powerlifting let's go all the way back before you were diagnosed in your 20s What's your sport in high school? Like Were you always athletic?
Linda Franklin 9:24
I was a cheerleader. Okay, this was the 70s, early 70s back in what was cheerleading,
Stacey Simms 9:30
the sport that it is now because the leader in high school in the 80s and it was not an athletic sport.
Linda Franklin 9:36
No, it wasn't then, but I grew up with a bunch of boys and I climbed trees. I've always been a tomboy. And when I did sports in school and high school classes, I set the standing broad jump record in high school and you know, just stuff like that. I kind of excelled at every sport that I did. Except for basketball. I can't run in triple vault. So that was like, but I think my whole family's pretty athletic.
Stacey Simms 10:04
So when you were diagnosed, first of all, what was the process? Were you given an answer immediately or at age 26?
Linda Franklin 10:12
Was it? We don't know what it was strange. Like I've told someone before, or many people that women, it's typical when you have a lot of high blood sugars for a long time, or even a short period, yeast infections are a really big problem. And it was for me, and I was actually in the midst of bodybuilding, starting lifting weights. And this is what introduced me to weights which I found a real love for. And I started just eating a lot drinking a lot up on my ping and the yeast infections got super bad. I look like I walked like I'd been riding horse for. So I went to the doctor, gynecologist beat into a company says you need to go to the lab, like today. So I went the next day because I'm 26 living by myself and my back. Yeah, whatever. Okay, right. Yeah. And I drink in syrup all day at the lab. And by the time I was done, I was like, almost 800. So they said, we'll come back in a few days. And you're going to go see your doctor on Monday. And you know, but they let me go home. And it was really casual. I mean, they knew, obviously, I was diabetic, but they didn't put me in the hospital right away like they would normally now. And that's pretty much how it all got started.
Stacey Simms 12:07
Did you immediately think? Did someone tell you you can go right back to the gym? Or were you told don't work out? Do you remember anything different?
Linda Franklin 10:12
No, I just remember sitting in the doctor's office with a diagnosis on Monday morning. And he just literally went into a fog. He just said you know you're gonna, this is gonna cut your life short. And just all the old 70s routine. And he wasn't trained. I mean, it was an internist, or whatever you call them and wasn't really trained in depth about diabetes, treated mostly type two. So he did tell me not to do activity. But I didn't go back to bodybuilding because I wasn't feeling good.
Stacey Simms 12:07
What led you back to your activities at all, though? Because you didn't ultimately wind up not exercising?
Linda Franklin 12:14
Yeah, absolutely. So what happened though, is I got really active only to control my blood sugar. I refused insulin, I freaked out. Well, I didn't have parents looking over me gone for doing this. I didn't have
Stacey Simms 12:28
an endocrinologist either. As you said, You know, I didn't. It was
Linda Franklin 12:31
just pretty, pretty basic. And I just decided, Okay, well, after I eat, I'm just gonna I gotta jump rope. I jumped rope, or walked or ran after every meal for about three months, until I was down to eating out of a jar peanut butter and decided, I think I need insulin. I just couldn't do it anymore. But that's I just, it was ingrained in me to exercise anyway, before that. So I decided, Okay, I kind of laid off for a little bit. And then I got back into snow skiing and doing normal things. But I wasn't in great control or anything. But I still did stuff.
Stacey Simms 13:10
Yeah. I mean, you couldn't have felt that great. But you also don't want to sit home and not
Linda Franklin 13:13
feel great. No, I'm not wanting to sit behind and watch everybody do stuff when I know. So when did things start to get better? Actually, I would say right before my first pregnancy, I knew that I needed to get my ducks in a row before this happened. That was when I was 33. And I went to the sweet Success Program. But they were both my pregnancies were planned. And I decided I got my a one c under six and got pregnant, had my first baby. And then two years later, did the same thing. And then after that it got a little bit crazy again, you know, with kids and was hard to keep in control. But that's when I realized I need to do better. I didn't have a blood sugar meter, the first two years, I cut my strips into quarters to save money because the meters then would take cut strips, they won't know. So I did that. And I did all these things to save money. But I did a lot of injections to I was stacking insulin a lot up and down, up and down get really low get really high. And it was I was a mess. Before we move on,
Stacey Simms 14:21
you mentioned something called Sweet success. Is that a local program to you is that a hospital program actually
Linda Franklin 14:27
was a nationwide program, I believe for women type ones that get pregnant and they just start this program suitesuccess. I don't know if it's California based or if it is nationwide. I'm not really sure but it is I do know here in California and it was wonderful. He said he was at a more it was at a UC hospital. I was there every two weeks but they both went fairly well.
Stacey Simms 14:54
It's such a different time I think it's hard to understand is
Unknown Speaker 14:57
Unknown Speaker 14:58
not only the insulins were different But as you said the blood sugar meters were new in the mid 80s. It's not like it is now at all.
Stacey Simms 15:11
Right back to Linda answering that question and taking a look back. But first Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom G6 since it came out more than two years ago. And it's amazing. The Dexcom 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 mean, do you remember back before where you had to wait in a two hour warmup, and then you calibrate then it would start populating? It's just a great advancement. We've been using a Dexcom for seven years in December, and it just keeps getting better. The G6 has longer sensor were now 10 days, and the new sensor applicator is so easy to use. Benny does this all by himself. Now. We 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.
Now back to Linda. And she's talking about what technology was like when she was first diagnosed.
Linda Franklin 16:20
No, there were no cgms there were no cell phones. I mean. So it was Harry Caray. You know, I especially being diagnosed in my mid 20s. I know some people that were diagnosis, children, their parents kind of monitored them and got them through high school into adulthood with a lot of success, but also got them real regimented. Whereas me, I'm 26 I've already got my routine and this gets in the way. And here I am gone. Uh, well, I'm just going to make do till whenever until you know more good stuff comes along. And I I suck at technology. But I sure do love it. I'm telling you.
Stacey Simms 17:00
Well, unless I'm laughing technology, I can't even get my your phone good wired things to behave. And you know when my lighting is insane, so we're in good company, sister. Don't worry about that. But let's talk about you said you started to turn things around a couple years after your second child was born. I'm curious, like, Did you meet somebody? Did you just say to yourself, Linda, I'm not feeling great. I want to do more. I got the CrossFit stuff going like
Linda Franklin 17:21
I'm actually no, I never did know anybody until the dots started. So I didn't really know anybody that was type one, until I was probably well, until I met Daniel Borba the founder of the group. That's why my brother called me said I met a type one because I really didn't know anybody than other. I worked in endocrinology office, and there was another girl there that was, but it wasn't the same as meeting and talking about
Stacey Simms 17:49
was it until you met him that you've got things. I don't see more under control. But you're such a success story. Um,
Linda Franklin 17:57
it did help because it, it made me pay attention to it more, I was kind of brushing it under the rug for a lot of years, like, Okay, I'm just gonna just shoot myself through my chains and just keep doing what I'm doing. And he put it in my face. And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time. So when I met him, it was really an eye opener for him and me to talk about, we were just so excited to talk to each other about things. But before that, my whole connection with type one, and any type of anybody else out there with it. What were diabetes forecast magazines, and I'll never forget when I was in my mid to late 20s. I got one with Bret Michaels on the cover on my porch. I had it I have a T shirt, but it was so cool. I'm like, Oh my God, he's a teenager with type one. Wow. Yeah, it was it was weird. But I had stacks of diabetes forecasts and I would read them. And that's how I connected to it. There was nothing else to connect to really for me.
Stacey Simms 19:02
So tell me about CrossFit. This is not for the faint of heart. I don't even sure where to begin. I just think of people flipping tires. Right and to be ranked 14th in the world
Linda Franklin 19:13
at one point. Well, that was 2014 CrossFit open. Yeah. What goes into that? I got in. Okay, well, it's at that point in time, I was training five days a week. And in between all that I was riding up and down to the CrossFit box on a bike that had no gears up and down hills, like so, you know, I'm a nut. So that's what I did. And I just trained five days a week and did everything I could I mostly trained with it was all younger people in the box. So you know, at my age I started like I was like 57. So there just aren't weren't that many people who were that age in my box. So all these younger people in there and I'm going I gotta keep up.
Cuz that's my, that's how I think.
Stacey Simms 20:03
So take us through a little bit of how you manage diabetes, though, for something like CrossFit, when it is it's cardio with strength. There's just so much going on.
Linda Franklin 20:10
Right? Yeah. And there's a lot of variables and you don't know from day to day, and I actually had to talk to the owner there to give me the workouts the day before, which she doesn't know, CrossFit box likes to do that, because they don't want you to cherry pick their workouts, they want you to just come and do whatever is on the schedule that day. But I had told her, I can't keep doing this without knowing because I have to plan. And so she was kind enough to work with me and what I would do, I knew that what time the classes were, and after talking to Ronnie, my coach, back then he wasn't my coach, but he knew I was doing CrossFit. And he was actually an admin in the athletes group and said, you know, do some insulin and eat some protein and a small amount of carbs, but do half the insulin for it, and then go and take some Gatorade, put it in a bottle and have something to sip on, which is what I started doing, and it started to get better. But still, it was never perfect. It was really difficult. The ups and downs. And it mostly was the adrenaline afterwards kicked in. And I kicked in while I was working out. But afterwards, the blood sugar's were high for like 24 hours. And it was ongoing, you know, until I had to stop. Some days were different depending on the workout, but just some workouts just hit me really hard. So it was never stable.
Stacey Simms 21:30
Did you ever figure out how to handle this? I gotta tell you and I'm only dealing with a teenager. Yeah. Isn't CrossFit that much? Like he hasn't workout like that is what I mean. But we definitely have those adrenaline highs after certain sports.
Linda Franklin 21:42
Yeah, they're really tough alone. Yeah, soccer, I have really big problem with that, too. And my bigger problem, I think was all of it was that I would not eat. Like when I did soccer tournaments, I wouldn't, because I couldn't eat when I was out there running because I played striker. And it was, you know, a lot of sprinting, and I just can't eat and do that. So I wouldn't eat. And I think that is part of the problem was that I wasn't consuming enough food and taking insulin for it to get my blood sugar's down into a normal range. I think it's really important that people don't starve themselves around activities, just try to put your food in at a, you're not to stuff yourself, but eat the right things and take insulin for it, and you will get through it. It may not be perfect, but it will be better than if you don't eat at all, because your liver will raise its ugly head.
Stacey Simms 22:37
How then did you go to powerlifting, because that's just a natural progression, it's something happened to just see something or set a goal.
Linda Franklin 22:43
It was not a natural progression. I CrossFit, well, long term diabetes complications actually probably caused it I did with CrossFit, you do a lot of excessive gripping exercises, a lot of things are like do 100 days and then 50,000 level bar and you do the pull up thing. And with all the gripping that I was doing my overtime, your tendons thicken with diabetes when it's out of range. And so that's what happened and my fingers started to trigger all all of them all. But what happened for people who weren't familiar,
Linda, I'm sorry to interrupt you. Can you explain what that is? When you say okay, triggered?
Yeah, so trigger finger is you have tendons and all of your fingers. And there are two that go up to side. And there are little if you can imagine a fishing pole with a line on it with a little I don't fish but me there's, you know, there's a little you know, the little things that you thread the, the wire the line through, okay, so those are on your knuckles, and those of your tendons sliding up and down. So the line so when you when they get thick, and like weedy and stuff, then they don't slide as well, they get caught. So with the thickening tendon, it can't slide through the little shields that are on the side there on your knuckles, so they get caught and they get stuck, and then you pop your finger open. But it's a it's a really common problem with diabetes and in women that are my age.
So I went to UCLA doctor, he said, No, all your fingers are involved, and we're gonna have to do surgery. So I had a lot of hand surgery. And so I recovered and then I had shoulder surgery several weeks later, so I was just a mess for about a year. But I knew that I needed to get back to lifting I just I missed it so much and I just couldn't sit still my blood sugar's were starting to was gaining weight. I'm like, Oh, I just don't like feeling like this. So I talked to my brother who's a CrossFit expert. He's been in the games four times, and he told me you know, you could possibly power left and went back to the gym, started working on it, put a video in the Athletes group and I said, Okay, I've kind of reached a point where I don't know where to go from here. What do I do? And Rodney saw my video and he's like, let's talk. So we talked. And that's how I got started. Wow. What
Stacey Simms 25:11
is appealing to you? About powerlifting? I can think of a lot of things. But I'm curious, like, why do you do it? What do you get from it?
Linda Franklin 25:21
Oh, man, that's a really tough question to answer. I think it's a rush of, and there's obviously adrenaline involved, too, but just lifting heavy, it's mental. You know, obviously, there's a physical benefit for it. But the mental part of it for me is that I like feeling strong. I just love the feeling of being strong, or getting stronger. And I don't care about, you know, records are great and everything. But to me, it's just the feeling of being strong is wonderful.
Stacey Simms 25:54
What was it like, though? I mean, I know it's not about the records. There's a tremendous picture of you. I think you're breaking a record. And there's a crowd of people. I don't know if it's a video screen. I couldn't tell from the photo that I was looking at. And everybody's kind of cheering and robbed me, especially as cheering. Oh, you know what I'm talking about? Yeah, just Philadelphia
Linda Franklin 26:13
meet that. I went to, I believe, yeah. And in fact, that was me. And Roz, such who is in our group and does the daily workouts on the weekends, we did a meet together, Rodney coached six or seven of us out with a group, but there were seven type ones that did that. Wow, that meet in Philadelphia. So I flew out there from California, never flown that far in my life. But I did it. And we It was a blast. And it was a huge type. One thing was so awesome.
Stacey Simms 26:46
I'll come back to the other questions and about the records. But what was that like for you? I mean, as you said, You've never flown that far, you came all the way east to be with a group of type ones power lifting. I mean, that must have been an incredible situation just to be around everybody.
Linda Franklin 27:00
Yeah. Well, and, and in fact, I hadn't met half of them. But we had talked, you know, over social media and stuff for some length. And although Roz, I knew before that she had come out and handled me for a meet in California, which was amazing. Another one of us flew out from Portland. And it was just, I can't even explain how crazy it was with the blood sugars and all the beeps. And it was just insane. But we were all there cheering each other on. And you know, Rodney had his hands full. Let me tell you. That's awesome. It was pretty incredible.
Stacey Simms 27:35
What's different about managing blood sugar's when you're powerlifting? Then CrossFit, do you mind if is like a little bit of advice, maybe to for people who are looking to get into it.
Linda Franklin 27:43
What I found is consistency is key. And it doesn't have to be every day. Because when I first when I first started getting really back into exercise, after being diagnosed, I tried to do something every single day. And I don't do that now. And I don't feel that I really have to other than I don't sit down all day long. But what I find with it is, it's more of a weekly pattern, versus a daily pattern. And if you do, train over time, you'll start to see changes in your blood sugar's at first when I first started, it wasn't great, but I started to learn how to treat. I knew what my weak plan was. And I could say, Okay, today, I'm gonna have a little snack before I go. But typically, I know how to combat highs better because it's not random stuff. I know what I'm getting into. Because it's just easier for me. It's more predictable. And now my body feels that it is to
Stacey Simms 28:45
Is it a matter of keeping track and logs or looking at your CGM data?
Linda Franklin 28:50
A CGM data is important. I used to keep logs ridiculously back before anything was around, so I can't do that anymore. I tried it last two days, and I'm done. But I do keep a workout book. I don't record my blood sugar's though. But I do know that when I go out there, I'm in a range. I either put my exercise mode on, I take my pop off if I see it start to fall, but I typically run fairly flat. Unless I just for some odd reason. Something goes awry. And that happens.
Stacey Simms 29:23
You mentioned exercise mode. Do you use control iQ? Is that what Yes,
Linda Franklin 29:27
Stacey Simms 29:28
Tandem Dexcom. And it works pretty well for powerlifting.
Linda Franklin 29:32
It does when you're doing high reps. When I do heavier weight, lower reps. I don't mess with it. I just leave it alone. But I do. You know I have an exercise bike in the garage. I get on every once in a great while. I do it
Stacey Simms 29:47
a couple of minutes ago, you mentioned complications. And I feel like sometimes especially we as parents, we're so afraid to talk about that kind of stuff. Right? And the only way we want to talk about it is did you do it Right, with what did you do? What was your a win? See? How did you eat? Or did you at hell? You know, we were so narrow minded on that, that I just want to ask you, and I guess I'm, I'm trying to figure how to ask you. But first, let me say thank you for talking about complications in the first place, because it is something that happens. It's not something obviously, you have always taken great care of yourself, even when you were saying earlier that you didn't, you're active, healthy person. Is it hard, though, to share those experiences with the diabetes community?
Linda Franklin 30:29
Actually, it isn't. And I feel that I'm being helpful when I do that. Because it could be diabetes, it could be anything else. To me, it's part of living life. And I look at it as I've done the best that I can, I don't look at it as a bad thing. I just try to let people know as not to be afraid of it, I do as I get older, I do have some anxiety around it now like seeing my blood work. When I go to the doctor i get i get real anxiety around lab work and stuff like that, I it's just part of getting older. It's not just part of being diabetic. You know, my mother died from type two kidney disease. And I helped her go through the process. And it was really, it left a real whole, you know, and I but it also made me aware that I need to, I really need to be careful. And so when I wait for my labs to come, I'm always like, how are my kidneys, you know, that's the first thing I worry about, because of what she went through. I saw what she went through. But you can only be the best you can from day to day. And I just hate to see people beat themselves up day after day. And I have adapted to what my hands are now they're not pretty and they're not, you know, my palms are strong, my fingertips are weak, but I found something I could do to keep me healthy. So you just adapt around these things. It's what we have to do as human beings, regardless of what we're dealing with. And I think it's good to know.
I mean, I had someone reach out to me the other day about trigger fingers. She's been diabetic for almost 20 years, maybe I feel so good that people can reach out to me and talk to me about it. Because it's it's a real thing, just like frozen shoulder and all that other stuff in the end being type one diabetic. And I just think that it's okay. There are ways to handle it. I had a great surgeon, he fixed me up not perfect, but it's another chink in my armor. Now, and now I've got stories to tell right? down
Stacey Simms 32:22
it's life with or without diabetes. Yes. You had mentioned before we got started that your daughter had learned a lot from you, in terms of being able to spot diabetes. Can you share that story?
Linda Franklin 32:35
Yeah. So you know, with my kids, obviously, I've had two kids while being pregnant at 33 and 35. And both of them have had to give me glucagon. Unfortunately, I know, there's a lot of people that have lived as long with diabetes as I have and have never had to use it. But here I am. And they recognize signs just from being around me. Are you low? All the typical questions, but she worked at a daycare center and in a gym, and the couple brought their daughter there. She was 18 months old, and they dropped her off and she was not well, and my daughter was holding her and said, I think she's diabetic. I don't know what clued her in but there was some symptoms that this little girl was having that, you know, she recognized. I can't really tell you but I'm so thankful in a weird way that she did.
Stacey Simms 33:25
And and the 18 month old did wind up getting diagnosed.
Linda Franklin 33:28
Yes, she was the youngest in the county. Yeah, at that time. And actually she was it was in the hospital for quite some time and we ended up nannying her after that first my daughter, and then I did and I gotta tell you, kudos to you because I nannied her for six months, and I was a wreck. Oh, the literal wreck. I'm like, I can't do this anymore.
Stacey Simms 33:52
There is truly I mean, every there's no good. There's no bad he didn't do the type one right? It all stinks. But there is truly something unique about toddlers and very little ones. It is a it's a circus. Yeah. It's just it you have to laugh.
Linda Franklin 34:07
Because thank God, I know. Well, you know, the parents were super cool. And they just wanted her to be they loved having us there. And they knew that I handle it. But the thing is, and they were regimented, but not to the they want her to live a normal life. And it was so great to know that not to restrict her so much that she couldn't have fun. That's great. That's, that's funny.
Stacey Simms 34:30
So a world record holder, all this wonderful stuff. You are in your early 60s. Now what do you have any any other goal or is there anything you're working on now? I mean, you've done enough You don't have to.
Linda Franklin 34:44
Actually I am signed up for me to November, but it's November 7, in LA there's COVID there's the election. I think I may just pass on this. I'm really giving it some serious thought and I think it might just I might just do a mock meet at home. You know, I'm a little scared about the COVID thing, because I've had diabetes for so long and, and my age, even though I'm healthy, I don't know how much vascular disease I have. And they do say that that's an issue with it. So I just want to be careful. And there's no point in me really stressing out about something like that right now. It's not that important to me to go do so I figured I could just do a fake one in my garage. Hey,
Stacey Simms 35:24
I've seen some pictures of your garage, though.
Linda Franklin 35:26
I'm not what I was
Stacey Simms 35:28
gonna say you. Did you put that together this year?
Linda Franklin 35:31
Yeah, actually, some young kids here at the gym locally, the gym shut down. They had it at the gym, back up, and they sold it. And I bought it. Oh, I was very blessed in that regard. But yeah, so it's little tiny, single car garage. But I got it all in there. Just what I need. And it's working great.
Stacey Simms 35:49
I'm curious. After all this time, it must be just such a part of your life. But do you still have to get psyched up to work out as often as you do? Are there days where you're just like, I'm laying in bed on none of this nonsense?
Linda Franklin 36:00
And not very many? Yeah. I have them every now and then I had one just I think it was Sunday. Actually. It was like, yeah, I'll just put it off to tomorrow. But no, I have to set goals. Oh, to stay motivated, you know, but I I'm always looking for a goal. I can't not have one. And I think it's really important for people to have goals, but not to get so hung up on it. It's not a failure. If you don't meet it, it's the fact that you're working on something is the success.
Stacey Simms 36:30
Before I do let you go here. I'm curious. There's so many people in the group here for support here for advice. If somebody is just kind of dipping their toe in the water as an adult with type one or a parent of a kid who's you know, playing high school sports, any advice for them? I mean, I would assume that with the technology that we have, things are easier, but there's still some basics that you have to think about.
Linda Franklin 36:50
Yeah, well, there's always a couple things I preach about. And one is when I did have that really bad, low blood sugar, my daughter's boyfriend's a firefighter. And he said, Hey, you need to get up a box of and put on their low blood sugar type ones, snacks, or whatever you want to put on there. But make it bold and let everybody know where it's at. So when you go to sleep at night, and you start to have a low, it's always so important to have something on you or near you all the time. It doesn't have to be like if you're in the house, big deal. It could be across the room. But when you're in bed, and you're sleeping, you should have something by your bed, it gives your parents peace of mind. Or if you go play sports, you need to let everybody know that you're diabetic. I when I first joined a soccer team, that's the very first thing I did. I'm actually proud to be diabetic. Not that I like having it. But I'm proud to tell people look at this is me, this is what I'm going to do. And I want you to support me because I'm going to do this. So I think it's important to embrace it. Just let people know, don't hide it from anybody. And because they'll feel guilty if something happens. It's not fair to them, either.
Stacey Simms 38:00
It's a good point. Yeah, it makes it easier for everybody. I always feel bad when people or kids are shy.
Linda Franklin 38:04
And it's an educational point to you know, you bring it up and didn't tell people I had a guy asked me the other day goes home. You got it bad.
Unknown Speaker 38:12
Yeah, you had the bad kind.
Linda Franklin 38:15
Okay, so we sat for about a half an hour after about the night school.
Stacey Simms 38:20
I just curious too, is anything ever happened? Where like it's popped off? Or somebody hit it with something? You know, My son has all sorts of crazy stories. Oh,
Linda Franklin 38:28
actually, no, I've been pretty lucky. I'll just you know, knock it off on a door jamb or something. But you know, that's happened a couple times. But other than that, I'm pretty careful
Stacey Simms 38:37
with a thanks so much. This was so fun. Thank you.
Linda Franklin 38:39
You've asked questions I've never been asked before. I love it.
Unknown Speaker 38:48
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 38:54
You can find more information on Linda and articles on her and find that picture that I mentioned with Rodney Miller and I will put that in the Facebook group as well. But you can find everything at Diabetes connections.com. Every episode has its own little little almost like a blog post. But every episode has its own page with a transcript as well. You can listen you could download the episodes. You can listen on any podcast player. I mean, at this point wherever there is audio on Stitcher, Pandora, Amazon, we're all over the place. You can find Diabetes Connections. Up next Tell me something good with a very devoted diabetes dad.
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. And that's where the Gvoke Hypopen comes in. It 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 in usability studies 99% of people were able to give Gvoke correctly. I am so glad to have something new find More go to Diabetes connections.com and click on the G voke e shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk.
In Tell me something good This week I want to share with you this story. This is so adorable. I found this on Facebook and I think it do need to see the photo. So I'll link that up in the group as well. But I will describe it the best that I can. Let me read the caption first from Andrea and she says yesterday we went to Mayci's endocrinology office for our first of three pump training classes. Mayci was given the opportunity to put a trial failing pump on to get the feel of it and become used to it. She was a bit afraid and apprehensive at first. Now looking at this photo, I want to say Mayci is maybe three, maybe four. She is a preschooler, I know that much. And the pump that they're talking about is the Omni pod here. Andrea goes on to say, Daddy stepped up and volunteer to also get a trial sailing pump. He's not type one to help support and show me see it is no big deal.
And this is the cutest photo of the dad right next to me see, and they're both showing off Omnipod on their arm. And she looks a little nervous. Still, you know, preschoolers are doing that smile, and they're a little nervous. But then it's got to be great to have her dad next to her doing that. Kudos. I think by the time this photo has posted the time has gone by maybe two weeks, and she may have already been live with the Omni pond pump. And I hope things are working out great.
I tell the story in my book, the world's worst diabetes mom. But one of the things that made me the world's worst diabetes mom is that I never tried on any of the technology. I never, you know, I never tried to make Vinny feel less alone. It sounds terrible when I put it that way. But I never put on a pump instead, I never put on Dexcom several reasons why. First of all, we're so lucky Benny has been surrounded by friends with diabetes, since he was diagnosed. No, we didn't have anybody close to us. We didn't have any people in our town or our school until at the end of first grade. And he was diagnosed at two. But we didn't know people through jdrf. And we didn't know people that we could hang out with and see one of my best friends started a little diet buddies thing for little kids. So we always knew people who had the same tech on that he had. And the other reason I never did it is because I was so afraid that if it hurt me that I would never be able to put it on Benny again. And that's true. I was terrified that if a pump in set hurt or a shot hurt or late by the time I had Dexcom he was he was nine years old, it didn't really matter anymore. But if that hurt, I had hardened my heart in the way that you do in this terrible way that you have to do when you are doing medical things necessary things to your child. And boy that sounds so dramatic when I put it that way but I think a lot of you understand what I mean. And we had caregivers who did it for themselves just because they wanted to experience it and said oh it's no big deal. It'll be fine. I was never sure it would be no big deal. Is that interesting how we as parents do things so differently?
But back to this fabulous dad if you have a Tell me something good story, you can always email me Stacey at Diabetes connections.com or just drop it in the Facebook group I every so often, and they are always such great story. So thank you so much.
quick look at innovations this week a segment I added this year Sensionic holdings which is the company behind the eversense implantable CGM, they have announced they are filing for a supplement application to extend the wearable life to 180 days. What does that mean? It means Hey, the FDA is now considering letting the eversense CGM system expand 280 days in the US that is quick math six months. And that is up from the three months that it is currently allowed for, you probably haven't heard too much about ever since recently. And that's because honestly earlier this year, wasn't clear that they were going to make it with COVID. Everything else that had happened, it really seemed like the future of the company was in doubt. But they cut a deal with asensia diabetes care, which used to be part of Bayer diabetes. So very, very big company here, which I think is a good move for the ever since we've looked into it because with many wrestling and who knows what will happen with wrestling with COVID. But workouts are starting again pretty soon as I can't imagine they're doing actual wrestling. I'm guessing this is more just fitness workouts. But wrestling is a really tough sport for diabetes technology as you can imagine, because everything's fair game, so somebody could put their hands pretty much on you almost anywhere that you could put a Dexcom or a pump in set. So we've got a lot of great advice from people who've been there. And we've got lots of good methods but we are looking into ever since as a possible backup plan. It's weird to think about because you know, full disclosure here you know, we use the Tandem X to with control IQ which means we need the Dexcom G6 right now. So that kid could have the ever since under his skin and then the Dexcom has Well, not during wrestling season, I don't know what we're going to do. But as always, I will keep you posted on that. But if you have any news for innovations, and that does not have to be a big technology news story, it can be your hack your tip your trick for diabetes, please let me know as well.
I said a couple of weeks ago, this was going to be a very busy time in terms of news stories in the diabetes community always seems like fall has a lot going on. And that is definitely the case. podcasting is really hard for breaking news. But I do my best when something happens to kind of go more in depth and give you a perspective on it by talking to the actual players involved. So I hope you're in the Facebook group or follow me on social media, because that really is the best way to stay on top of what we're doing here. I don't mean to be cagey. But in terms of the timing of the podcast, there are a few things that I have that I've taped that I hope to release in the next two weeks. And as I'm talking to you here, as I'm taping this episode, I've got like three different news stories that I'm working on that I don't know, maybe they'll be old news by next week. So got to do the best we can with the weird time shiftiness of podcast, or maybe someday somebody will pay me to do a daily diabetes news show. If that's you, let me know. Ah, 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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
It's been a busy fall already for Medtronic; they've acquired Companion Medical and the FDA approved their 770G pump. Stacey catches up with Diabetes Group President Sean Salmon to talk about that and much more. Find out the difference between the 770G and the upcoming 780G, their plans for longer-wear pump insets and when they might have a no-calibration sensor.
In Innovations this week, a new study showing the benefits of once a week basal insulin. It's called Insulin Icodec.
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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 remixed autoinjector 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, catching up with Medtronic, we're talking about the newly approved 770 G, looking ahead to the 780 G, their acquisition of In Pen and how they think they've cracked the code on longer where pump in sets,
Sean Salmon 0:42
the things that are in insulin to keep it from going bad. The preservatives, if you will, are behind a lot of that sort of site actions that you get. So we're able to take that stuff out and have just filtered Insulet. a queue will deliver to the site. That's really the magic behind getting the extension of use.
Stacey Simms 1:00
That's Sean Salmon. He heads up Medtronic diabetes group. In innovations this week, a once a week basal insulin, how would that even work?
Welcome to another week of the show. I am so glad to have you if you are new welcome. Glad you found us We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned to back in 2006. And we have his high school sophomore 504 meeting this week. Yeah, it's virtual. His whole school is virtual. I've shared on the show before he is part of a very large school district in the Charlotte, North Carolina area. And the whole district has been virtual. younger kids are starting to go back to school in October. They're staggering it right now High School won't go back in person until January at least that's the plan.
So I'm really interested to see how they handle this 504 meeting. He's had one, you know, we've been diagnosed since he was two. So he's always had one. In our district. We have a separate DMMP a diabetes medical management plan that covers a lot of the basics that are maybe in your your child's 504, but I assume this will focus on testing. I don't know. I mean, he's home. So you know, he can go to the bathroom when he wants he can drink water when he wants. I'll share more about that though. Mostly, I think this is about keeping our place in the 504 for things like the ACT and the PSAT and all that testing and he is so thrilled, but it's going to be coming up.
Another thing I want to tell you about real quick is Hey, in September, we saw a big boost of sales of the audio book of the world's worst diabetes Mom, you know, this is my book, it's part memoir, part advice, stories, real life stories about raising a child with type 1 diabetes. And the audible version has been very popular. And I'm telling you September, I don't know maybe end of summer and everyone decided to get an audiobook, but audible loves when that happens. And now I have two free copies to give away, you do not need to have an audible account, you don't even need to really start one here, you're not going to be signing up for something you can't get out of you do need an Amazon account.
So if you want the copy, I'm not doing a fancy contest on social media, I probably should. But all you have to do email me Stacey at Diabetes connections.com put audio book in the subject line and I will give you the first two people who do so a free book will make it very simple there. If you're interested in perhaps the paperback or the ebook, you can head on over to Diabetes connections.com or it's on Amazon, whatever is easiest for you.
One more thing and it's an apology. Last week I apparently mixed up when I was talking about Medtronic 770 and 780 G. We do clarify that in the interview here with Sean Salmon. But to be clear, the 770 g was recently approved in the US. It is basically the same as the 670 g except for the addition of Bluetooth connectivity for data sharing and remote monitoring. And as you will hear, you'll be able to update the 770 G and future Medtronic pumps at home just like your phone. Alright, Sean Salmon. With that and a bunch more we go down a laundry list,
but first diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, I was really impressed at how much they get diabetes. And it makes sense when you think about it. Their CEO, Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, and 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 deliver 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 One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is Medtronic Executive Vice President and President for the diabetes group, Sean Salmon. And we spoke just as the deal for Medtronic to buy companion medical makers of the In Pen was closing. So that is a done deal. Now, In Pen is a smart insulin pen, you're probably familiar with it, it keeps track of dosing and recommended dosing, sort of like what you'd get with an insulin pump, you still have to inject, but the dosing can be automatic, the app will tell you exactly what to do. And keep track just like an insulin pump does as well. We talk about that. And a lot more here. Here's my talk with Sean Salmon.
Sean, thank you so much for joining me. There's a lot going on at Medtronic these days, I appreciate you spending some time with me and my listeners.
Sean Salmon 5:44
That's my pleasure. I appreciate the opportunity. Thanks, Stacey.
Stacey Simms 5:46
We're gonna go down pretty much a laundry list of technology and questions from listeners and things that they want to know. But let me start slow. And just ask you, how are you feeling about everything these days, we've got delays because of COVID. We've got, you know, a year like no other it's a cliche at this point. But you know, in your own words, how are things these days at Medtronic, and in terms of, you know, what you're looking at going forward?
Sean Salmon 6:09
Well, it's interesting, right? I think we're all living through some unprecedented times, just everywhere in the world right now. And it's certainly challenging. But at the same time across Medtronic, you know, I think we've got such a rich pipeline, and just about every single business, it's, it's exciting to see what you know, what the future is gonna bring, we get past some of these near term challenges. I've been here for 17 years, I can't remember a time where we had so much innovation all stacked up, ready to go
Stacey Simms 6:34
Well, let's jump in and talk about it. One of the first things I want to ask you about is the acquisition of companion medical. And this is the startup they've got the in pen. This is the I think my listeners are very familiar with it. And we've done episodes on it. So tell me a little bit about what the plan is, for companions in pen product with Medtronic, what are you gonna do with it?
Sean Salmon 6:59
Yeah, sure. Well, maybe I'll start out with, you know, why did we decide this was a good idea? And yes, I came into this role. Yeah, you whenever you start a new job, it's been about a year from now, the first thing you do is you formulate a strategy of how are you going to serve your patients in the market? And it's really, you know, strategy is really a question of, what are you providing for who, when you start asking those questions, it really narrows down what your focus should be in, and didn't take that long to sort of Peel apart? What is it that are people living with diabetes are seeking and how are they? How are they being treated today. And if you look around the world, it depends on the country you're in. But multiple daily injections is the most frequently chosen therapy, it's something that ranges between 60 and 90% of the treatments that are out there.
So you know, really the philosophy app is that for us to know, what are provided for whom we need to know, you know, where do people where are they on their journey? And where do they want to go. So, you know, injection in and of itself is a fine therapy. But there's just really variable outcomes that patients are being able to get from that. And a lot actually about just the, it's made difficult by the fact that you really don't always know how vigilant you are, how much insulin you've taken, how much you have on board. And it's very hard to keep track of all that. And what companion has done with the implant system, of course, is to track that insulin, so you know exactly how much is given at the right amount of time and have some estimation for carbohydrates, the ability to load that up. And then of course, the CGM data is there. So when you have those components, a lot of that difficult math calculation about how much insulin Do I need to take at a given time is made simpler. And we can extend that by adding a lot of what we have within our automated insulin delivery systems, algorithms, personalization of those algorithms into that experience with a pen.
So if you will, we're trying to close that open loop, or at least close it down some and what we do with automated insulin delivery systems as we have this track record, right, have you just recording CGM data over time, and knowing what the influent amount is, you can really get to an understanding of how individuals kind of respond to insulin, and more personalized, the amount of dosing that happens. So get an even tighter connection to how much insulin someone needs to take at a given point of time. Of course, on meal handling, that's the place, we're really pushing a lot of our technology, we have a very large and capable group that does data science and artificial intelligence. And all that really means is that we're able to take large data sets, and then put them into actionable insights that really simplify how people can get better control without having to do anything.
And one of the really interesting areas we're investing in right now is around meal handling. So we can with our technology have a really good sense of when you're going to eat. And we can confirm that some gesture control technologies that come from a wearable like a Fitbit, or an apple watch or something like that. That tell us can confirm that some is eating. So in that instance, you could, for example, remind people, there's been no bolus given that it's time to bolus. And if you miss just two boluses a week in a meal, that equates to about a half point increase on the A1C. So obviously, outcomes can be made better. But the important thing is that it's done in a sort of an invisible way or helpfully in the background way. We're not asking somebody to anymore, which I think is really the sort of driving principle behind what companion medical set out to do within pen spec, this least burdensome as possible? Well, we can add a lot of technology that isn't visible to the user, for the most part, but can really drive a better experience and better outcomes. So what we're trying to do with a closed loop we can bring to this open loops, I said, and that's really, I think how the two fit together can help it a lot of ways.
Stacey Simms 10:58
A couple of questions about You just said you. You mentioned the gesture technology. That's Klue, right. You all acquired Klue this year.
Sean Salmon 11:03
Is that going to be part of a companion medical system?
Yes. So the idea is, we're going to have that for any means of insulin delivery, right. So it's the ability to detect that somebody is in the process of eating. And the absence of any kind of bolus is a great opportunity to say here, let me give you a helpful tip here and remind you to bowls, whether you're pushing a button on your pump, or you're, you're reminding yourself to bolus we can drive some improvement there. And it was evaluated in a recent study that we did. It's a small study. But we showed that we could fact drop a one suit by a fairly sizable amount just by bolus reminder. Now, ultimately, I think we can use Klue and that technology in a way that can actually automate the delivery of bolus so nobody has to do anything within a sort of closed loop system. But you know, that's, that's some more work than where, or whatever to do it. Absolutely. It's
Stacey Simms 11:53
you heard me laugh, because, you know, just by bolus reminder, parents around the world have children with Type One Diabetes would argue with you that a simple bolus reminder in the form of a parent does not make that much of a difference. Yeah. But I hear you, I
Sean Salmon 12:07
think it Yeah, I mean, the difference here is the bolus reminders, and just it's time to bolus what we can do. Knowing the history of how much insulin is on board. Get a quick estimation is the medium small, large amount of carbohydrates being consumed, we can tell you how much to bolus not just that you need the bolts, right? which we think is a helpful insight.
Stacey Simms 12:28
When you talk about Klue. It also makes me laugh as you listen. As I talked about Klue, we did an episode with them in the past if you'd like to learn more, and Sean , I laugh because every time I talk about Klue I do the gesture of eating food. I don't you can't see me but every time I mentioned it, I think that's because that's how it was explained to me when they first demonstrated it. It's a really interesting technology. But that'll be in not just pens, you're planning on using that in pumps as well.
Sean Salmon 12:53
Yeah, so you know, Klue actually runs on on a wearable. And then it talks to the algorithm that's either you know, on your phone for your pen, or can be the algorithm that's driving the automated insulin delivery system. So think of it like a sensor, and the sensor gives input so that the algorithm knows what's happening. And it lends itself to any means of insulin delivery.
Stacey Simms 13:15
One of the big concerns and you know this when a large company buys or acquires a small company or product the big concern is that you know, it'll be shelved or there will be big changes to make it more proprietary. The in pen is now used with Dexcom and the ever since implantable CGM. Can you reassure people who are using it right now that you're not going to change that I assume it'll be used with a with a Medtronic sensor, but will you continue with the sensors that it is integrated with right now?
All right, right back to Sean answering that question. But first diabetes Connections is brought to you by Gvoke hypo pen, 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 Gvoke hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvokek 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 Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the G voke logo. gvoke should not be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk.
Now back to Sean , talking about Medtronic plans to continue in Pen with its current partners.
Sean Salmon 14:44
Yes, we have no plans to take away anybody's sensors from them. But we're not entirely in control of that. So if if sensionics and Dexcom plan to maintain that access and then we're game we want to make sure that people have the support they need
Stacey Simms 15:00
When you say you’re not in control of it, you’re talking about what Dexcom and Eversense would do, you're not talking about something on your side.
Sean Salmon 15:07
No. So the way all this works is you have to have, depending on what platform of phone you're dealing with, you have to have a thing called an API, which is basically a hook of software into the algorithm. So somebody on Sony decides they don't want to have that access to the longer they can turn it off. But we're not going to turn it off. We don't have control over that. So our belief is that, you know, if we're meeting patients where they are, and they're on a Sensionics device, we should maintain that access for those patients. Of course, we want to open up access to our own CGM. So we have a lot coming in the pipeline for CGM, which is pretty exciting. But no, I understand the sentiment that when you a large company buy something that they want to shelf it This isn't like big oil buying biofuel. Right now we're, we think we're gonna bring a lot better experienced to patients by combining the best of what companion has developed an impact with what we're endeavoring to do with things like Klue and neutrino and a lot of other personalization algorithms that be used in the closed loop side.
Stacey Simms 16:08
So let's talk about sensors. Let's just pivot right to that first, though, before we let this whole thing go within any timeline and integration with the guide. assume it's with the Guardian, CGM.
Sean Salmon 16:17
Yes, so initially, we'll have Guardian, but there's no we have three or four, five actually different generations of sensors coming and it's going to be compatible with everything we develop going forward as well.
Stacey Simms 16:30
Let's talk about Guardian Connect. This is the standalone CGM doesn't need to be paired with an insulin pump. Tell me a little bit about the reception of that, what the plan is for it. And you know, Who is it for?
Sean Salmon 16:41
Yes, so I think a standalone Guardian has been sort of an on ramp to be able to use an integrated CGM with our pump. But frankly, I think the experience that we've provided with that needs a lot of improvement. That's what we're endeavoring to fix with the pipeline. And there's two parts to that one is finger sticks, you know, to, to calibrate or to confirm before dosing as required finger sticks, and that's something that we are trying to remove in the next generation. And the other one is on just the, the ease of putting it on. And it takes a lot of overtaken steps to insert, and generates a lot of trash in the process. So all of that's problematic. And we're, we're moving to an integrated platform where the sensor, and the transmitter all in one, easy to apply three step, just press it on your body kind of approach. And in the interim, reducing or eliminating the need for finger sticks. That's what the near term pipelines about and then longer term, we can take the size of that down even further, we're already taking about 50% of the volume down from one move to next, we can get a lot smaller than that we have some really interesting technology that uses something called a wafer fabrication, which just means you can make very small electronics in a very highly repeatable way. So you take a lot of variation out.
And then of course, you know, making sure that we're continuously improving the reliability and the wear life of these devices. There's a lot of technologies we have aimed at to to ensure that that happens. And simple things like we spend a lot of time money and effort developing patches is going to stay there, you know, the adhesive that won't interfere with the skin, but will stay there through very difficult conditions. And it took a lot of engineering, we actually did a lot of work in the fields in South Florida, just you know, high humid, very hot heat to make sure that we would have this he's up just right. So there's a lot going on in the CGM side of things. That's pretty intriguing.
Stacey Simms 18:40
I'm curious, and this is a very specific question. These future generations, any plan to go straight from a CGM sensor to a watch, that's something that just seems to be very difficult, you know, no phone involved in between? Nothing like that.
Sean Salmon 18:55
Yeah, no, it is difficult. And it's difficult for a lot of reasons, including power management of how that that Bluetooth connection is different than one to a phone. So I think as as watches evolve, and maybe that technology changes and the ability to kind of talk a lot of this on the kind of wearable side of things. It's not entirely just what can you do with your CGM, your algorithm said some, it is more complicated than you'd think, you know, hopping from phone to watch that takes the processing power and the connectivity that's already there. But think of it like a highway, right? There's like so many lanes have a highway that you can drive a car on. And if the watch is already tethered to one, one connection by Bluetooth to your phone, you've got fewer lanes available, other connections. So that's really, you know, it's I don't get too technical about it. But that's really the the near term challenge. But you know, I think there's strong interest in this. And as the wearables progress, I think we'll have the opportunity to to do things like that. But right now, it's just complicated.
Stacey Simms 19:56
All right, let's talk 770 g This was approved by the FDA in August, and it's down to kids as young as two, my understanding was for the approval. Now I'm this is gonna pardon my take on this. And this is for all of the pump companies. I wish you guys would call your pumps, something that told us more about it. I don't know if it's a medical device thing, and I have this problem with Omnipod and Tandem and everybody else. But you know, it's all numbers. So tell us a little bit about what's different from the 770 g to the 670. And then to the 780. Like, right, what's different about this pump?
Sean Salmon 20:33
Yeah, so the the biggest difference other than age education, which does, you know, it's still indicated for people over the age. I think there was some confusion at first said it's just for kids, and it's not Oh, kids. Yeah, so I, you know, I think that the biggest difference is really the inclusion of Bluetooth connectivity with this with this device. And that does a number of things. So first and foremost, it allows a person or a parent or caregiver to see the CGM pump date on a film. So we we've been lagging in that competency. Now that's available.
It also allows the carelink system which is our management system glucose to automatically update so that you can do things like telehealth visits, right. Or if somebody's going to the doctor's office, rather than that, that kind of interruption to the workflow where the pump has to be connected and then downloaded, that really slows down that visit for for the person that's, you know, at the visit, it slows down the workflow for the health care providers. So the ability to take that connection and automatically upload it at your convenience without having to do anything, is what that connectivity brings to us as well. And then finally, it goes all the way to we can when software becomes available, make upgrades. Or if you have to patch something knows you know how to get out of your phone, where they'll have a new version to patch up something, you can just push that over the air. So we have that capability to upgrade future algorithms without having to connect anywhere.
Stacey Simms 21:59
So just to be clear, this is like what we do with the Tandem X2, you plug it into the computer, you get the latest download, it changes the software in the pump, and then you're off and running. Same thing, plug it in,
Sean Salmon 22:09
that was what one big difference, we'll plug into the computer, it goes over the air, just like you can update your unit up to your phone over the air today. If you changing your operating system, it's the same idea. You can do this without having to have a computer or having to plug cable in,
Stacey Simms 22:24
do you need a doctor's prescription for changes? Or is that a change by change? I would assume there might be?
Sean Salmon 22:30
Yeah, it depends on the change. So if you're talking about, you know, a security patch, you don't need a prescription for that, if you're talking about moving to the next algorithm, like the difference from 770 to 780 is really an algorithm change. It's the same hardware platform that would require a prescription.
Stacey Simms 22:45
So let's talk about the 780 which is the I assume this is the next thing in the pipeline and following the numbers.
Sean Salmon 22:52
Yes, so we we have released the adult data for the 780G, which at is about the algorithm now at the American Diabetes Association began this year virtually. And really, there's a couple of differences here. What this device does now is it takes the Ability Beyond just basal insulin, but also to bolus where you can the situation where there's rising glucose, the algorithm can bolus every five minutes to control. Somebody maybe missed a meal bolus, so they miscalculated how many carbs they ate, for example, and blood sugar still rising, we can predict where it's going to go both correct it without stacking up insulin. So what all that means is we can drive better time and range when there's there's missed boluses or miss calculations on carb counting. That's one big difference.
The other big difference is the target that you set these two, so you can set a target, as you may know, on the 670 G, the target you can set is 120, we can still set a 120 target on this algorithm. But we can also set that target of 100. And the clinical results that we showed, were clear that you could take the target lower without increasing the risk of hypoglycemia. In fact, it was so numerically lower rate of hypoglycemia. So this, this algorithm, I think really gives a lot more freedom. And that's, I think the biggest thing that we were looking for all these are great, you know, time and range, we've been leading that the industry and being able to provide the best time and range, but the user experience got a lot better. And a lot of it had to do with alerts and alarms and all the things that we did. And I think To put it simply, there was a belief as the first hybrid closer algorithm out there, that whenever something goes awry, that you should kick somebody out of what was called auto mode and have them go confirm something with like a finger stick.
Because I think the belief at the time was that you know, you can't trust his algorithms take care of somebody, and a person is better off better able to manage their diabetes than a machine. And I think that was probably a fallacy. As it turns out the algorithm that what we change here is we just aren't kicking people out. We are waking people up in the middle of night do things the algorithm pretty good at smoothing things out without causing any new troubles prevention. So a lot of that, I think out of abundance of caution safety alerts, kicking people out asking for fingerstick calibrations was unnecessary. And we're seeing a big reduction in all of that and very high satisfaction among the people in a clinical trial. And we've launched it in a limited way in Europe so far, and feedback has been really tremendous. This is a very big improvement of what we had been offering a couple
Stacey Simms 25:25
of just questions for clarity, Sean , the you're talking about the algorithm in the 780? Right, the 770?
Sean Salmon 25:32
Yes, that? No, that's 770 is basically the 670 algorithm. The big difference is really that indication of age, as well as the the ability to upgrade
Stacey Simms 25:44
software. If you want a pump right now that you can then upgrade when the new 780 algorithm is available. It's got to be the 770 you can't upgrade. Yes,
Sean Salmon 25:54
yes, you're correct. Okay.
Stacey Simms 25:56
Um, to that end, just again, just to clarify, are there other ranges you can set? Is it totally customizable down to 100? Or is it 120, or 100.
Sean Salmon 26:06
So you can choose, you can choose either target, but you can adjust other settings like the part ratio like insulin sensitivity factor. So there's some customization that can get there. And we ran, I think, three clinical trials. And we're currently doing what we call a continued access study in the US where we're trying to optimize those settings, to make sure that we can get the very best experience for people with the pump. And I think what we've learned is there's a lot of these other settings that we can give more help to the endocrinologists to be able to set those but right now, those settings are, are the endocrinologist job to go fix, we can give them suggestions. But the user themselves can't make those adjustments as easily.
Stacey Simms 26:46
Wait, I'm confused. The endo can make some changes, but the users can't.
Sean Salmon 26:50
Yeah, so there's certain things again, it's about making sure that people are safe, where we could recommend changes, or the algorithms can change things along the way. But there are certain settings like these carb ratios and everything else that need to be dialed in. Yeah, but
Stacey Simms 27:03
the user can do that. Right. I don't have to bring the pump to my endocrinologist and say, I Well,
Sean Salmon 27:07
they can, but they should they should make sure that you're talking to
Stacey Simms 27:11
Got it, yes, no, no with it with the guidance of an endocrinologist, but you're not going to make me get a prescription to change my carb ratio.
Sean Salmon 27:17
No, no, no, I think it's just that we can really fine tune the system. But rather than experimenting on yourself, I think we can give some help to know what are the optimal settings for you. And that's know something we call personalized closed loop is, we could do that automatically in the background without anybody talking to anybody. That's one of our future pipeline projects, we can also tell you from the history of your glucose and insulin data, how you can get a little bit better precision for somebody. And I think that's what we're trying to do on the carelink side of things. Here's the ability to really dial this in the right way. I think that for some endocrinologist, that's not going to be helpful, right? They're very, very good at this to do it all the time. And then there's others who don't really have large type one populations. And they could use a little bit of light called the teachers edition of the textbook, to help them make sure that they're doing the best for patients.
Stacey Simms 28:08
I think that sounds wonderful. I just think, you know, this podcast audience is a little bit different, or I shouldn't, it's a lot different. This is an incredibly well educated audience that is going to get a pump like this, and mess around with it themselves at home and see how much they can change it. In fact, as you know, part of this audience is going to physically try to probably break into the pump and see what they can do with it. So I know you can comment on that you don't have to comment on it. But that's why my hackles went up when you said the endocrinologist can, but I get what you're saying for the vast majority of people with diabetes, the endocrinologist or even their general practitioner, which is different story altogether, is really going to be the guiding hand here. Just another question you mentioned with the 780. The change from, you know waking people up kicking out of auto mode, fewer calibrations, is that really in the works in terms of fewer or no calibrations or that's a hope for a future sensor?
Sean Salmon 28:58
No, that's absolutely in the works for the sensors. So we we have a product in that's complete as clinical trial and other ones very close to doing that. That eliminates or vastly reduces fingerstick calibrations? And then yeah, so it depends on the regulatory claims that we make on that specific device. And then we have two others in the pipeline that absolutely eliminate finger sticks altogether. Now, that doesn't mean that you know, if you get a reading, it doesn't make sense to you that you shouldn't go confirm it, the glucose, the blood glucose, then calibrate No, no perfect sensor. But yeah, our algorithm itself that goes into 770 cuts down by about half the number of requests for finger sticks with the same sensor. And then when we change the sensor, we can, we can largely eliminate that unless there's something that needs to be confirmed, because the reading doesn't make sense.
Stacey Simms 29:53
So is the hope that the 780G would launch with, I hate to compare it to Dexcom but let's just go ahead and do that. Cuz that's what we're all talking about here anyway, obviously, most people who use a Dexcom understand that it's not infallible, you do have to double check, sometimes, you know, you'll get a sensor error when it doesn't understand what the you know what it's getting the information that it's taking in, it'll stop working, that kind of thing. So is the hope to launch the 780G system with a sensor that's comparable to what I just described.
Sean Salmon 30:20
So it's gonna depend on where you are in the world. But the 780 is going to be compatible with past and future sensors. So you know that they may be on different timelines. And we really try to think about this like it's a system to so we've got the pump, we've got the algorithm, we've got that sensor. And the other thing we have is the tubing set and reservoir. And there's another innovation we're bringing that allows you to extend the use of that on label of that tubing set from the typical two to three days. At the seven days. We call that the extended wear infusion said that's also known as clinical trial. And the goal is to have that also compatible then 780G algorithm. So the algorithm that's on that pump, which can have all that connectivity Vantage can work with this current and future pipeline of sensors, and be upgradeable on the infusion set is all sort of in a suite of what we're trying to bring together.
Stacey Simms 31:14
Well, Boy, am I glad you brought that up. Because I have said for years, and my son has been using an insulin pump for I don't know, 13 years now that the inset is the weak link of pumping. And I know, you know, a couple years ago, we were all excited about the BD flow was supposed to be this the latest and greatest, it didn't work out so well. So that went away. Can you tell us a little bit about what you found? When I hear longer? Where insets? I think, Oh, my gosh, you know, we've all been warned about infection and scarring and don't use the same site for that long. What are you finding?
Sean Salmon 31:47
No, it's a really good question. And you know, what is it that's so magical about it? How do you get to extend it? And without getting too much detail to the simple answer is that things that are in insulin to keep it from going bad, the preservatives, if you will, are behind a lot of that sort of site reactions that you get. So we're able to take that stuff out and have just filtered insulin if you will deliver to the site. And that's really the magic behind getting extension of abuse. And you know, we did a study where we, we measured this and about 80% of the study participants were able to get seven days your body is going to react a little differently being who you are. You see that with CGM, right? Some people can wear those things for two weeks, and other people can't. Because their body's more aggressive at attacking that foreign body response, just by comparison, for three days, which was our control arm 70% of people got to three days, right? So we've got a higher proportion of people able to make it seven days, we think it's largely due to getting out those preservatives that are the insulin to keep it fresh.
Stacey Simms 32:50
That's fascinating. It's simple as a filter. I've always thought that yeah,
Sean Salmon 32:54
it's not it's no, it's also your insulin is a very sensitive molecule too sensitive to temperatures, you know, and it's also sensitive to you know, how it's contained in the reservoir. So our rigid reservoir system doesn't like mechanically damage the molecule either. So that's, you know, an advantage that we've always had with our reservoir design, then you add to this, the ability to filter out the preservatives, and you get this extension to where so you can preserve a lot of insulin, use a little more judiciously, and of course produced it. You know, the difficulty of having to change your set every day. Maybe it's a fusion set Sunday, you change it once a week, and maybe same time of changing your your sensor as well. Who knows?
Stacey Simms 33:34
Well, I think that would be pretty amazing to have a longer wear inset. That works. Because a lot of people have trouble as you said, getting to three days. Yes. One of the big questions that came up in with my listeners when I told them I was talking to you, and we've covered most of them. But one of the big questions came up was Medicare, in terms of this technology is great. Will it be covered? Can you speak to that at all?
Sean Salmon 33:53
Which which part of Medicare you asked about? Are you asking about the Well, let's talk Yeah, more of a?
Stacey Simms 33:59
Well, I think the real question is everything. But let's talk about the the system. As you mentioned, you talked about it as a system, the 780 will the system be covered? Or will it be piecemeal?
Sean Salmon 34:09
Yeah. So the rules of Medicare are really around the designation of the sensor, can you make a claim of what's called non adjunctive, meaning that you know, you don't you don't have to confirm the CGM ruling before you dose insulin. So when you're 64 years old, and your pre medic quick care and you're on like a 670 g system today, your commercial insurance pays for the sensors, the tubing sets, the reservoirs, of course, did initial investment in the pump. When you turn 65 and you move to Medicare, you no longer can get the Guardian sensor paid for because we don't have that designation. For Non exempt. They've even though it's clearly driving the pump all day long every day. So we have to get that labeled claim for the sensors for everything to be covered. And that's what we're trying to do right now with the Guardian sensors and of course, the future pipelines. themselves. But like I think it's a, there's a couple different efforts on that. But it is a little bit of an idiosyncratic thing that that exists in Medicare itself, just the way the payment law works. And we're trying to get that changed,
Stacey Simms 35:14
has COVID, delayed studies, submissions, things like that for you, while
Sean Salmon 35:19
at the branch of the Food and Drug Administration that regulates diabetes face is also involved in a lot of things COVID related, including like the in vitro diagnostic testing, and that sort of stuff. So yes, I'd say on the medical reviewer side, in particular, there's been just a difficulty for them to service all the kind of pre market or new devices that are coming through while doing this difficult work of making sure that all the COVID tests and things related to that are done. So yeah, there's been something that has been a little bit challenging. And of course, in the clinical trial environment, we actually had a couple of trials going on during COVID. And some of them have gone pretty well. Honestly, I think people are stuck at home and not willing to participate the trial. It's not been like that. In other parts of Medtronic, we've got a lot of the hospital based studies have been very difficult and highly impacted by understandably, people's fear of going to a hospital for for anything right now is pretty high. So I'd say it's been a mix. Like we've had really good collaborative conversations with FDA making sure that we streamline and make it as simple as possible as we submit new dossiers. But there is really a constraint at that medical reviewer level that's been, you know, difficult for the entire industry.
Stacey Simms 36:35
You've been so generous with your time. I really appreciate it. I just have one more question for you here. And that's about tide pool, about a year ago, maybe more now, Medtronic and tide pool announced that they'd be working together on a, you know, a future interoperable, closed loop. And it would be a separate system from the seven at any update on that.
Sean Salmon 36:55
Yeah, we're worth continuing to work with tidepool. There's a joint steering committee that we participate in. Our goal here is to create a Ace designated pump that runs the tide pool algorithm. But yeah, that collaboration is ongoing. We're working well with them. But I don't really have an update on that.
Stacey Simms 37:13
Well, Sean , I really appreciate it. There's so much going on. Do you know to talk about and thanks for keeping us straight with the numbers and everything else. I hope you come back on and you know, continue to explain all of these developments. But I really appreciate it. Sean , thank you so much for spending so much time with me for sure.
Unknown Speaker 37:28
Thank you, Stacey.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 37:41
We talked about a lot of stuff there. There is a lot more information as always over at Diabetes connections.com. You can learn more on the episode homepage about everything that Sean talked about. I'll link up some stuff to Medtronic into some other studies. I said a couple of weeks ago, there's something about September, October. It's like all summer long. Yeah, we have the ADA and we have the different conferences. But then every year at this time, I feel like oh, it's kind of slow, nothing's happening. And then I get all the tech companies in the fall. So I'm excited to continue to bring you as much information as I can. I have more interviews coming up. We just talked to Dexcom. I'll also be talking to Abbott. I'd love to get Omni pod that folks from Insulet back on here. So we'll we'll see what we can do. But in the weeks to come. definitely let me know if there's particular technology you want to hear more about. I love talking to these companies. It's always fun to get a kind of a peek under the hood. And I like hearing the voices and the stories of the people who are in charge of this stuff. I appreciate them coming on not everybody does you know that but it's great when they can answer your questions. And I love doing that. So let me know if you want to hear from and let me know what you want to know.
All right innovations in just a moment with that once a week basal insulin that's being tested. We'll we'll talk about that. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years when it hit us full force a little early. I was so glad we had Dexcom you know Benny's insulin needs. I've shared this. They started going way up around age 11. And when I say way up, I know some of you parents out there with little ones think maybe we increased by point two or something like that, because I remember those days Benny's first basal rate was 0.025. That's how much basically got an hour. But by the time between ages 10 and 12, his basal rates doubled. And between 12 and 13, they doubled again. So along with the hormone swings, I really can't imagine managing diabetes during this crazy time. 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 A1C and overall health. And by the way, he's almost 16 and those insulin needs have already started going down. This is wild. If your glucose alerts and readings from 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.
Innovations this week, a once weekly, basal insulin. This is something that was announced earlier this summer. I don't know about you, but it's snuck by me It was announced at the ADA Scientific Sessions, Novo Nordisk announced that a once weekly insulin Icodec had performed as well as Lantus in a 26 week trial. Now, this particular study was done with people with type two diabetes. But before you dismiss it, there has already been a trial of people with type one diabetes, and novo expects to submit and get this and hopefully FDA approved for people with type one and type two diabetes, I couldn't find a lot of information about the previous trial with type one, there is another one that completed over the summer, hopefully, they'll release the information on that maybe some of you who are more savvy in the ways of clinical trials can dig it up the
Can you imagine once a week basal insulin, I mean, obviously, the benefits of that would be incredible. And also thinking about it for people who like to go untethered using basal insulin from an injection along with an insulin pump, which is something we did for two years. And even with control iq and you know, more advanced hybrid closed loops. Just talking to Medtronic about there's, I know a few people who like to use untethered with it, who find that there's just something about getting that always constant, steady, basal insulin smooths everything out. And certainly when you get into the enormous elephant doses that Benny was taking for a while, it helped tremendously to take that load off of the pump. I mean, between his weight loss and you come in at a puberty and I know he loves when I talk about this stuff, his insulin needs have come down incredibly, and certainly to the point where we didn't need to stay on untethered, but I think it's fantastic, it's a great option to have and once a week, basal insulin makes that a lot better. So I will keep you posted if I find out more about the type one trial, but is called insulin Icadec.
If you have something for innovations, please let me know this can be a hack that you thought up a tip or trick something with technology or new influence. You can always email me Stacey at Diabetes connections.com.
I mentioned Benny's 504 Review earlier in the show. And that happens later this week. He's also got an endo appointment this week. lots going on. I don't think the endo appointments going to be too exciting, hopefully. But you know, we do check in every quarter. And I think to mix it up, my husband is going to take him this time. Slade rarely goes to the endo usually because he's working in busy and and it's been on me for the last couple of years, which I love to do. I really like catching up with our endocrinologist who's become a friend. But I think I'll let the boys go. And gosh, you know, another reason not to go. I'm looking at making sure my door is closed. So Benny can't hear me. You know, the kid has this permit, and he's gonna be getting his driver's license if he passes in January. And I know Slade will let him drive to Charlotte, which is like a 40 minute drive. So he can do that. I don't need that stress of sitting in the front seat and putting the mom's seat belt right throwing my arm out, which I cannot believe I do. But I've done it with both of my kids. Oh, I remember my mother doing that clear as day. I don't even know if they're doing driving tests here. They haven't been. I know plenty of kids who got their licenses this year, because of COVID. They're not actually giving them a driving test. They're just saying, oh, did you do your hours? Alright, here's your license. And it's a graduated system here in North Carolina. So they can't get their afternoons they can't drive at night until they take an actual driving test. I don't mind goodness. All right. So let's keep you posted and updated on next week. We'll see how much he lets me share.
Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. Don't forget if you want the free audio book, email me Stacey at Diabetes connections.com subject line audio book, and the first two will get that promo code. Thanks so much for listening. 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 wrongs avenged