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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Now displaying: Category: living with T1D
Jun 21, 2022

Wearing an insulin pump can be a huge help when it comes to managing diabetes, but finding a place to put it can be difficult. Women’s clothing in particular, isn’t great for storing stuff. Erin Calhoun-Dulaney has lived with type 1 for 40 years and she finally got fed up enough to create her own product. We’ll talk about Skirt my Pump, her experience with T1D and her career as a Hollywood publicist.

Stacey also has information about Tandem's Mobile Bolus limited roll out. Click here to find out more and sign up. 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode Transcription Below (or coming soon!)

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*Click here to learn more about OMNIPOD*

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Apr 5, 2022

It’s always a privilege to talk to one of the Joslin Medalists. This week you’ll hear from Laurie Harper. She was diagnosed as a toddler in 1955 and will mark 67 years with type 1 later this year. She shares what she remembers about her early years with diabetes, how her family adjusted, the technology she started with and what she uses now.

The Joslin Medalist program recognizes and studies people who’ve lived with type 1 for at least 50 years. Laurie tells us more about the medalist program, about aging with diabetes and she takes a look back at how different the management was almost 70 years ago.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Learn more about the Joslin Medalist Program 

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

*Click here to learn more about OMNIPOD*

*Click here to learn more about DEXCOM*

Feb 22, 2022

Lauren Bongiorno was diagnosed with type 1 as a child and growing up, she showed every sign of success. She was a division one athlete, playing soccer in college and achieved the lowest A1C her endo had seen in a college student.. but while her care team celebrated that 5.7, she was miserable.

Lauren shares how she took control and got that happiness back. She’s now a Diabetes Coach at her company, Risely. We talk about some common pitfalls, the pressure to be perfect and what coaching really means.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

OMNIPOD

DEXCOM

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Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921 Where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, Lauren Bongiorno was diagnosed with type one as a child and growing up she showed every sign of success. She was a division one athlete playing soccer in college and achieved the lowest A1C her endo had ever seen in a college kid. But while her care team celebrated, she was miserable.

Lauren Bongiorno 0:41
And I was sitting there and it was like literally an out of body experience because I'm watching like the doctor, high five, my mom and my five each other and I was like, I'm not happy, I'm not happy.

Stacey Simms 0:52
Lauren shares how she took control and got that happiness back. She's now a diabetes coach. We talk about some common pitfalls, the pressure to be perfect and what coaching really means. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. As I'm taping the intro to this episode. I am like you sifting through some FDA approvals these seem to be coming in fast and furious now or at least as fast and furious as the FDA does anything. But after a very long logjam, you know, this is all stopped up by COVID. It really seems like things are moving along. So to that end, this episode will not focus on tandems mobile bolus, which was just approved, you know, bolus by phone or the ever since CGM 180 day where approval. Those were the two biggies over the last week. And I am going to focus on them in upcoming episodes ever since should actually be next week. And Tandem a couple of weeks after that. As always, if you'd like to get your questions asked please join us in the Facebook group Diabetes Connections, the group if you're not on Facebook, no problem. Shoot me an email Stacey at diabetes connections.com. I have my own set of questions. But I always want to hear from you. And your questions are always fantastic. So please send them in.
But there is a lot more to diabetes than technology. You all know that. And I wanted to share Lauren Bongiorno’s story, because I think this really resonates for parents of kids with type one. And for adults with diabetes, nobody's harder on us than we are on ourselves, right and the pursuit of perfection. It's just gonna mess you up. I'll let Lauren share her story. But just for background, She is the CEO and head coach at a company she founded called Risely that's a bit of a play on how in diabetes arise isn't a good thing. You know, an arrow up on your CGM, a higher A1C , their website says type 1 diabetes has given rise a bad reputation. But we think it's time we reclaim it. I think that's really clever. And I think this is the first time I've spoken with a health coach on the show. So we talk about what exactly that is, and why somebody would choose to work with a coach along with a medical provider. Here's my talk with Lauren Bongiorno.

Lauren, thanks for spending some time with me and my listeners. I'm so excited to talk to you.

Lauren Bongiorno 3:33
Oh, thank you so much for having me on. Stacey. I'm so looking forward to this conversation. Yeah, I

Stacey Simms 3:38
feel like I've we've connected and I've seen you, you know, all over social media. So I'm, I'm really excited to kind of hear more of your story and share your experiences. Because just the little bit that I know, I feel like you're kind of the embodiment of why perfect doesn't always work out with diabetes, if I could say that.

Lauren Bongiorno 3:56
Yeah, I think you can say that. And it's so interesting, because I think that if there's one thread of my entire life that I can really look at, it's this striving for perfection, and then getting too close to perfect and realizing, Oh, wait, this is not what I wanted. So definitely applies to diabetes, for sure.

Stacey Simms 4:17
Well, let's back up and explain what we're talking about here. Let's start closer to the beginning. You were diagnosed at age seven. Do you remember any of that?

Lauren Bongiorno 4:24
Yeah, I definitely remember it. I remember it was the day after Halloween. I remember my mom being on the phone with my dad in the kitchen and I had just had a tantrum and I think she was trying to figure out if it was a seven year old tantrum or if it was a something's wrong tantrum. And I had been losing a lot of weight and when you're seven years old, and I was really like skinny as a child and you lose, you know, 20 pounds, there's definitely some signs that something else may be going on and I was drinking so much water and I remember hearing my mom, you know, talk to my dad and have them deciding To take you to the doctor, so I went to my regular pediatricians office, and I was sitting there. And the distinct memory I have is of my mom and the doctor on the other side of the door and my mom hysterical crying. And if you know, my mom, she's like the strongest woman, she is a like, so independent, so strong. And I don't think that was the first time I ever heard her cry, or at least I remember her ever crying. So I was like, Oh, something is wrong. And then I ended up in the hospital, stay there for a few days. And when you're a kid, and you have everybody around you crying and saying, it's going to be okay, and you're so strong. And you also at the same time, don't really understand what that means. It sets you up for an interesting and interesting path and an interesting life. And definitely now looking back a lot of things that I think I didn't realize was going on in my mindset, and in my own personal development and relationship with diabetes.

Stacey Simms 5:53
And so fast forward to a story that you tell on your website, which is when you were in college, and kind of realized that this was not sustainable. But I'm curious between seven and 19. Were you that model diabetes kid?

Lauren Bongiorno 6:05
Yeah, that's actually the phase I don't talk about as much. And it's interesting, because I think it's the phase that most people and most of our clients that rise they relate to. And so that stage from seven to 18 really was, it was me just being in a very reactionary mode with my diabetes. So it was like, Oh, your blood sugar is high. Shoot, let's correct it and get it down. Oh, shoot, it's low. Alright, let's drink some juice really fast. So you can get back on the soccer field. And it was very kind of ping pong lead. And I never fully felt like I had the energy or the mood that I think that I could have in hindsight now, because I didn't realize like how much that Ping Pong was impacting me. And I also really didn't care. Like for me what was most important and for my parents, and what they instilled in me was a, you're gonna do anything you want in life, diabetes isn't going to stop you. And B, as long as when you go to the doctor, your a one C is in a good place, then you're good and you're in you're healthy. And my a one C was never crazy. It was always in the high sixes, low sevens. And that was before CGM. Right? I was diagnosed 21 years ago. And so there was no really concept of time and range being more important than a one C and and things like that. I think that during that time, it was a lot of because I didn't want diabetes to stop me. I took that as don't slow down to pay attention to your diabetes, it was very much do the bare minimal to keep your numbers not from being crazy, but just in a healthy range or healthy to your doctor standards or to your parents standards. And that time of ping pong up and down. When I eventually got to college, I realized that wait a second, I'm playing I was recruited to play division one soccer in college, it was the first time that I really started to connect my mind and my body and my numbers. And really realizing that I was not taught a lot about my whole body like this whole body approach of food and nutrition and glycemic index and eating for energy and eating for better blood sugars and exercise for specifically insulin sensitivity and what happens with weight training. And we're working out you know, two times a day when you're playing soccer in college. And those exercises are impacting my blood sugars in different ways than I had seen in the past. And I was trying to compete with a lot of other players for spots. And now my blood sugar's 300. And now I have a disadvantage. And I didn't like that because I was a very competitive person. And I took this as an opportunity to become more independent and tuned in to my diabetes and crafted in a way that would make me feel successful and would make me feel in control. And as an effect of that, what I did was I became obsessed, I became obsessed with my numbers obsessed with the food that I was putting in my body, obsessed with exercising, like over exercising all of this to the point where I actually lost my menstrual cycle for four years because my body fat percentage was so low, and it wasn't like I wasn't eating it wasn't like I was suffering from an eating disorder. In that sense. It was literally just a disorder of almost like perfection, in the name of wanting to control my diabetes in my numbers so badly. And when you start to see the results of that you're like, Okay, I'm doing this right. And that is a story I tell a lot and a lot of people know is I came home from college I think I was a sophomore junior in college. I had my endocrinologist checkup and you know, when you're a teenager your parents still come to the endocrinologist with you sometimes the doctor and so I remember sitting on the chair and my mom next to me and the doctor coming in who is my pediatrician kind of doctor from my dad. The doctor from a from childhood. And she was like her hands were in the air. And she was like Lauren, I have never seen a college student with a 5.7 a one. See, this is A1C you've ever had this is incredible. How did you do it? She like calls the nurse and the nurse comes in. She's like, can you talk to my other patient like in the UK, this other girl in the other room who's in who's in college and her agency is in great. And I was sitting there and it was like, literally an out of body experience. Because I'm watching like the doctor, high five, my mom and my five each other. And I was like, I'm not happy. I'm not happy. And you often think that your blood sugar's being perfect, or your agency being perfect. That is the sign of happiness, it's a sign of hell, that's a sign of perfection. I know you've made it. And I would never ever want to put my body through what it went through and go back to that place. And it was really because of my mindset. It was my mindset, it had nothing to do with a 5.7 a one C because my last day one C most recently was a 5.6.

Totally different plays, I eat pizza, I have doughnuts, I have, you know, I want to have a fabulous relationship with exercise and with food. So it's all about the intention behind what you're doing. And that's what I realize most in that moment.

Stacey Simms 11:21
I have so many questions, Lauren. How did you get them from I mean, you're still very young at 19. I'm thinking my daughter is 20. My son is almost 17 at 19. How did you get from I have this great agency. And I'm not happy to now. And I'm sure it was a journey I'm sure didn't happen overnight to I have a great agency. And I'm happy with I mean even pizza and I'm exercising the way I want to.

Right back to Lauren, but first Diabetes Connections is brought to you by Dexcom. It's really hard to remember what things were like for us before we started using the Dexcom. I mean, I haven't forgotten at what I mean is it is so different. Now, when it was a toddler, we were doing something like 10 finger sticks a day. Even when he got older, we still did at least six to eight every day and you know more when he wasn't feeling well or when something was off. But with each iteration of Dexcom, we've done fewer and fewer sticks. The Dexcom G six eliminates finger sticks for calibration and diabetes treatment decisions. I think all the time about Betty's little worn out fingertips. And it makes me so glad that Dexcom has helped us come so far, his fingertips are now healthy and smooth, which I never thought would happen when he was in preschool. 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, learn more, go to diabetes connections.com and click on the Dexcom logo. Now back to Lauren. She's talking about how she found her way to being more kind to her body and to herself.

Lauren Bongiorno 12:58
I would say that it was definitely a culmination of a few different things. The first thing was the real that moment really was a defining moment for me. But it also just opened up more ways of thinking about my life. And my just understanding of myself. I had started doing yoga around that time in college and Yoga does this incredible thing of giving you space to really watch your body and watch your patterns and watch your thoughts without judgment that's like at the root of the philosophy of yoga, or at least one of them. And what I realized was I wasn't happy with myself and with my identity, that diabetes was something that my whole life I kind of pushed away and it was always in the background, but I never fully accepted it. And if you don't accept the body that you're in, in my experience, you try to overcompensate in other areas. So you try to overcompensate in being perfect with food being perfect with exercise being perfect with your blood sugars. And ultimately, I had this like moment at the doctor's office where I just looked it's almost like a flashback in a movie where I looked back in my time so far in college and I'm like everybody is going out and having fun and I'm like saying no to going out to dinner with friends so I can make my organic broccoli and fish or whatever it was because I was didn't want to be tempted by having bread or pasta at this like restaurant they were going to or I would you know not want to stay out late or even like drinking college I didn't drink a lot like barely drank in college because I wanted to go to a 6am yoga class next day because I know that that really benefited my mind and my body in the way that I thought it needed to. And I just realized that I didn't want to live a life that a wasn't sustainable and be I wasn't happy. Like I think that it's important to understand your core values and I think my values were shifting away from perfection and approval of others or approval. Have my doctor my family and like more of being a little bit of a renegade and being like, well what do I want my life to look like? What do I want my relationship to food look like what I want my relationship to just everything that I do look like and what came out of that was this realization that what I was doing didn't match up and so what I was doing it wasn't sustainable if I wanted to lead a healthy and happy life and so I wanted to find a way of how could I have a healthy diabetes you know journey with my blood sugar's and not have complications later on in life and not have be in that phase in my life where I was from seven to 18, where I was just paying palming all over the place and not being aware of my blood sugar's not having predictability and those types of things. And how could I also not be on the other end of the spectrum where I was super restrictive, obsessive over health, there had to be a happy medium, there had to be a better way. And I had tried so many different diets at that point, high carb, low fat keto, high fat, low carb, like don't eat bread, don't eat process, this so many packaged food, but I realized that it was just exhausting. It was exhausting to try to apply it an outer rulebook to my life, and I wanted to start looking at my inner knowledge and creating that rulebook for myself.

Stacey Simms 16:17
Let's talk a little bit about coaching. Can you explain a little bit about what coaching is because I'm, as a parent of a kid with type one we have only ever, like, seen the endocrinologist. And then I've relied on our educator, and, frankly, the diabetes online community. What's a coach,

Lauren Bongiorno 16:34
of course, so a coach really is somebody who is helping you with accountability is helping support you in getting to the vision that you have for yourself, and is there to reflect back patterns and observations and help you with behavior change. So for example, a lot of parents of kids that we work with in our programs, they're coming because they realize, okay, we see our endocrinologist or a doctor a few times a year, and there's so much time in between that we want to be able to understand how to get our child's numbers better overnight, or in the morning time or when they're going to play sports. And we know that it's really about like the day to day things and not so much the let's go to the doctor and just depend on on them to tell us everything, we want to essentially take ownership over this and understand what's happening with their hormones with their insulin sensitivity with their, you know, time of the month, if they're females who are going through that phase that can be really challenging or just growth spurts in general, with nutrition and all this knowledge. So I really Riselywe focus on a behavior change, be published research, and then see our client data that we've had since 2015. And it's a lot of of work of a combination of mindset, and the blood sugars and the emotional impact that diabetes has on you. So you can think of it as a supplement to your endocrinologist, your CDE. And you're an a therapist or a mental health provider. If you have that.

Stacey Simms 18:05
I get a little nervous when people who don't have a medical degree are helping but at the same time, I understand that. Like I said, I got most of our information from the community right when I started a Dexcom on my son at age nine. I didn't call the Endo. I mean, I literally put it on Twitter, and was like, I don't understand this. Can you help me? What am I looking for? So I'm kind of speaking out of both sides of my mouth, Lauren. But I guess the Frank question is, talk to me about helping people with type one as a coach, when you are not a diabetes educator when you know you do not have a medical degree?

Lauren Bongiorno 18:39
Hmm, I absolutely love this question. All the coaches on our team are nationally board certified health coaches with that at the root health coaching is about helping you get unstuck by helping you develop the tools and the strategies to become aware of your blocks and your patterns so that you can move toward that vision that you have for yourself or for your child. A lot of times people know what they should be doing. Right? They know, when you slow down you take time what's happening with your blood sugar's what we're doing is we provide a space for you that is a dedicated space and dedicated time to slow down and hold you accountable for looking at your Dexcom clarity and looking through the patterns of your blood sugar. Your child's blood sugar's for the past two weeks and saying, Oh, wow, we didn't even realize that at 8am Every morning or 7am when they get on the school bus that their blood sugar is is really spiking and we're rushing, right, we're rushing to get out at the door. So we're not giving them a pre bolus. We're not doing drinking water in the morning or we're having, you know, just a waffle instead of maybe adding a little bit of protein in that and let's get curious what would happen if you did X, Y and Z Right? Or putting them in the driver's seat most of the time and saying what do you think would change the outcomes for these numbers? Like what are the things things that you've noticed have worked for you that you want to be doing more. It's identifying the gaps in your knowledge, giving them the accountability and the relatability, to somebody living with diabetes, as all our coaches do that they need, and helping them with the implementation and creating sustainable change. We've coached over 350 clients over the past six years now. And if you look at all that client data, it speaks, and it says something. And what it says is that there is a need for coaching, because diabetes is a condition where it is impacting you 24/7. And depending on seeing your doctor, which the health care system in America specifically is very much a top down model approach, where you're sitting there and you're waiting to receive, receive your next move, receive what your basal changes receive what you should do next, it doesn't set you up for success, the education that diagnosis doesn't set you up for success, the touch base with your doctor doesn't set you up for independence. And we have a choice to either follow that or to create a new system and create a new way. And that's essentially what we're doing.

Stacey Simms 21:09
So let me ask you some specific questions. If I could like kind of pick your coaching brain here. This time of year, without diabetes, many of us are thinking about changing what we eat. I'm going to diet this year, I'm going to lose that weight I gained I'm going to and it never works. Because I think we all know that that kind of FAD dieting or that short term stuff doesn't work, but we do it anyway. Can you speak a little bit? Because you've been successful with this, you know, you mentioned you wouldn't go out to eat with your friends, because you had to eat a certain way at home? How do you get there? How do you create those changes that really do make a long term difference,

Lauren Bongiorno 21:45
I think that we have to stop thinking that there's this next one thing, this next diet, this next outer rule book or whatnot, that is going to be the solution to all of our problems with our methodology and coaching specifically, and in my own personal life, what has made the biggest difference is really holistically looking at the areas of your life that impact your health, from your relationships to your self worth and your self love to your with diabetes, it's nutrition and relationship with food. It's stress management, it's your sleep, it's your hormones and your understanding of all of that it's a holistic approach, and a holistic approach. It can't happen overnight. And so diets and things like that with food, if you've tried to do it in the past, and you've gotten through, like, you know, up to Wednesday, and then you're like, shoot falling down. More is like, Alright, we're gonna go over like on Monday, which like we've all been there, it's so fascinating that we keep going back to doing that same thing instead of realizing, wow, that doesn't work, right. And so what I like to say is, don't set a goal that has anything to do with a metric, whether it's weight, or even with a one C and like, specifically, set the vision that you have for yourself. And if you set the vision that you have for yourself, like how do they feel? How do they what do they look like? What how are they operating from day to day? What are they thinking like, who are they at their core, then you start making decisions on a day to day basis that support that vision and there's less pressure and when there's less pressure of like, oh, shoot my a one C or my you know, blood sugar isn't better than it was yesterday, when I woke up or the weight, the scale is a second today than it was yesterday, there's more chance of actually lasting longer, because you're not going to feel as defeated. So if you want to feel somebody who is energized, and who is, you know, really fitting good in their clothes, or just confident set that as your vision of yourself, and then on a day to day basis focus on doing things that support that vision.

Stacey Simms 23:54
Let me ask you if I could, and this will be for people who live with type one, you know, adults, young adults, older adults, but not parents yet, like we'll get to them later. Can you give us some advice, perhaps or a couple of tips to have, you know, like more confidence with type one. And as you said, like not necessarily how to get your agency down or more time in range, but just like some good stuff for this year.

Lauren Bongiorno 24:14
Yeah, I love that. So I would say the first thing is to lean into your diabetes. So many of us often think that the diabetes part is the shadow part of us and it's the part that we have to hide and we have to push away and if that is your underlying belief that I can't be loved if people know that I have diabetes, or if I'm showing my insulin pump or I won't be accepted onto the soccer team or football team or whatever it is. If that is your like subconscious root belief, then you're going to operate from that place and you're not going to want to be checking your blood sugar in public you're going to wait until after you're done eating with your friends or drinking to the bathroom and give yourself you know a shot or give yourself your insulin and setting yourself up for you know higher blood triggers all night long. So there are so many benefits of just leaning in. And coming from a place of me for years hiding my pump, not letting people know that I had diabetes and not telling my now fiance until three months in that I had diabetes, it is so freeing, and such a relief when you can just show up as your full self. And it has benefits of obviously your mindset, and how confident you are and of your numbers as well. So I say I would think that that's the first tip I would have because it's a more of a mindset, emotional tip that will take you so far. And then on a number standpoint, I would say to focus on 1/4 of the day. Diabetes is like a Rubik's cube where there's 1000 different is that there's at any one given time, I described it recently as being interviewed for an article and they were asking me to describe but a day in the life of diabetes. And I essentially said it's like a seesaw with 50 Different factors piling up on either side at any given time, and you trying to find the centerpiece, right. So there are so many different factors. And the idea is is to not get overwhelmed by all those factors. Because if you're overwhelmed, you're going to be paralyzed, and you're not going to do anything, and you're not going to want to move forward and you're going to feel defeated. So try to look at 1/4, the day that maybe it's your most out of range section, whether it's overnight, morning, afternoon or evening, and just commit to working on that. Just commit to maybe pre bolusing at dinner time or commit to actually putting your CGM alarm on or on a different ringtone. So you wake up in the middle of the night, if it's high, since that's like the longest amount of time you want, you want to be arranged essentially, for your overall health, choose that 1/4 of the day, and then once you nail that, then move on to the next piece. But diabetes is always this thing that it's continuous learning, and you want to be able to have the energy to sustain until there is a cure. And we don't have to lower your agency five points, or three points, or even two points in the next 30 days or 90 days we can work rather on building the habits that support that a one C.

Stacey Simms 27:13
What is your advice to parents of kids with type one in the new year? Like what should we be thinking? How can we help our kids like grow up? This is a big challenge. Happy, Healthy, independent, not too worried about diabetes, but worried about

Lauren Bongiorno 27:26
oh my gosh, yes. And we were talking about this off air. See where it's interesting, because we've coached so many people who are in their 20s 30s 40s 50s and beyond who have had diabetes since they were kids. And we've seen a lot of their challenges that they're coming to us with today that a lot of it is rooted in their childhood and how their maybe parents kind of or their their caregivers or their doctors spoke about diabetes to them or how they were trained to relate to their diabetes. And so when we see the parents of T Wendy kids in our group coaching program, or in our one on one programs, we're watching and we're we're seeing how they're relating to their child's diabetes and what their child is how they're related to their diabetes, and we're able to help shape them in a better direction, so that they're not ending up where the kid is, you know, 30 years old coming back to us being like my, you know, my mom, did you when I was coaching with you guys when I was younger, and I've been and I feel like I need to come back. Right? Like it's, it's helping them now. And still, those things that we wish as coaches and the older people in our programs wish that they had when they were children. So I think there's a few different messages that I would share. One is your goal as a parent is not to help your child avoid suffering, and avoid all the highs and all the lows and all those things all the time, your goal and your job is to be there for them in a way where they feel like they can talk to you, they can come to you. And you could observe maybe what you're seeing in their blood sugars or in their behavior in a teammate kind of way. So kids are going through so much with their hormones and with development, and especially in their preteen and teenage years just fitting in, in general. And then when you add diabetes on top of it, it's there's this extra layer that just comes with it. And so one of my least favorite things is when you hear a parent or a doctor say off that child, they're just being so non compliant, right? They're just they're not testing their sugar, they're not doing this, they're they're just not being responsible. We have to put stricter rules on them or we can't let them go out or we can't do that. That isn't going to help. Right what they you really need to do is to help them get to the root of why they're feeling that way and why they're behaving that way. So one thing that I we work a lot with on with parents is on helping them understand what their child's goals are, which for a lot of them it's to have the cupcake at school with their friends or to be able to go out and have a sleepover with their friends and not have their mom call them 26 times, right? Which I always joke about, because I'm like, now there's Dexcom share, when I was a child trying to have a sleepover, my mom didn't even have Dexcom to like, look at, I'm pretty sure she sat in the car outside the person's house for like, the whole entire night. It's valid, right and those in the kids and what they want, it's this balance between wanting to keep your kids safe, and also wanting them to just be a kid. So I think that a lot of the time, it's about you as a parent wanting to protect them by not burdening them. And just by taking away you know, all of the jobs that they're doing with their diabetes or their task or making it simple with like carb counting for them, we're only putting quote unquote, healthy food or low glycemic foods on their plate. But that might not actually be what's going to help them for the long run. So really, I think for any parent listening, this, to me is one of the hardest jobs, you guys are all heroes, I can't imagine I look at my mom now and my dad, and I'm like, Thank you, like, I had no idea what you were really going through. And that that job that you that extra job you had when I was diagnosed, and you're doing great. And I think that you can do quote unquote, all the perfect parenting in the world and your child, there's going to still have, they're still going to have challenges later on. So the goal is really to set them up with to be independent, to care about how they feel, to care about their numbers, but also to not be limited by their diabetes and and to find that balance.

Stacey Simms 31:32
I'm just curious. Did you ever go back to your endocrinologist who was like, Yes, this is amazing, like the high fiving. Doctor like does that doctor know about it this way?

Lauren Bongiorno 31:43
So the funniest thing about it is I adored that doctor, I love her. She we follow each other on Facebook. Sometimes when I do local, I speak at local JDRF event. She's there love her. And I think that she's probably seen me talk about it a little bit on social media for sure. We've never like address it specifically. But I don't it's not about her. That wasn't her fault. She was celebrating me like I think a parent would celebrate a child to achieve who had an agency like that. And I think the bigger issue is really the lack of emphasis on mindset. And on mental the mental and emotional impact diabetes has on children and teenagers and adults for that matter with diabetes.

Stacey Simms 32:27
Hey, I'm just curious. And I always ask guests this, you don't have to answer. What kind of tech do you wear? What are your diabetes devices if you don't mind sharing?

Lauren Bongiorno 32:34
Yeah, so I wear an omni pod and the Dexcom G six, I was on charts for my first two years living with diabetes. And then I went to a Medtronic wired pump for about, I would say, 14 years. And then the last six years, I'm not sure if this math, somebody can add this math, drag, but it should all equals 21, less five or six years I've been on an omni pod. And I just love, love love that it doesn't have a wire. And that's that works for me personally,

Stacey Simms 33:02
before I let you go. It talked to me a little bit about your partnership with a couple of nonprofits. You know, I know that you would rightly want to make more of a difference than just with coaching. So who are you working with? What are these about?

Lauren Bongiorno 33:16
Yes, so we are here to help create the short term change for individuals impacted by type 1 diabetes and families and the long term change with diabetes care. So our approach is community based it's collaboration, it's how can we all take our the best of our missions and lift each other up. And so ways in which we collaborate with the community. Number one, we have Kyler Keres, which is a nonprofit organization that provides grants for continuous glucose monitors and insulin pumps for children and young adults living with type one diabetes. And Kyle banks is the founder, he actually played Mufasa on Broadway in The Lion King. And he is an incredible human being we actually found out recently when we were together that we have the same diabetes anniversary November 1, so that was fireworks were going off. Because we already love each other so much, but we're thrilled to partner with them. Because we just have, I think, because I was diagnosed as a kid and so many people on our team are also diagnosis kids, we have a special space place in our heart for young adults and children who don't have access to those things. And there's a direct correlation between your household income and your agency and your diabetes control. And so we really want to be able to give back in that way and to help support those people. And then secondary to that we have our together to one D Impact Fund which partnerships that we you know, work with in the community. They're able to donate to that fun to help give coaching scholarships to people who face significant barriers to health care to our coaching programs. And all the people who come through our programs through the scholarship They're carefully selected and you know, have an in depth review process, but it really allows us to be able to impact the community on that intimate level.

Stacey Simms 35:05
It's so interesting to hear, like how much I noticed didn't happen overnight, but like how much you are doing, when you look back at that 19 year old with that amazing a one C, but that not so amazing life? What do you think you've come so far?

Lauren Bongiorno 35:21
You know, in a way, I feel like I had so many years of struggling with my diabetes, that it was a blessing in a way it was such a blessing because it brought me here and we've impacted so many people's lives with diabetes. And you know, women who weren't able to have babies, they've had miscarriages after miscarriage because you know, maybe it's related to diabetes. And then finally bring a healthy baby baby into this role because their agency is down or to the parent who their child is diagnosed. And they feel like there is no possible way and they don't understand how they can, you know, go to a soccer game and not completely tanked their blood sugar's and then they're able to and they feel that their child has that sense of freedom back and confidence that all these little things, it's really, it's why we do what we do. We are there's so much passion behind what we do so much intention, so much integrity, and so much, so much hope that what we're doing can continue to be a ripple effect and impact people on an even larger level than we're doing now. And that's what keeps us going every single day. So I think 19 year old me or even seven year old niece who is standing in front of my gym class, my mom recently found a video I was sending for my gym class after getting diagnosed, doing a fundraiser at my school with my little pigtails and limited t shirt on it was so cute. And that girl was I feel like meant to do this all along. And it doesn't mean that there's not challenges, it doesn't mean that there's not Robox but it means that that those things are just there to push me to keep going and push me to realize how worth it this is.

Stacey Simms 37:00
That's great. Oh my gosh. I love that. Lauren, thank you so much for joining me.

Lauren Bongiorno 37:04
Thank you so much for having me, Stacy.

Stacey Simms 37:11
You're listening to Diabetes Connections with Stacey Simms.
More information about Lauren and coaching and Risely and you can read her story. And she's been on some national media, she's got great videos, all of that is linked up at diabetes connections.com. As we do every week, every episode has its own page.
If you head on over there and click on episodes, you will find them all. There's also a very robust search. And I say that because we are up to this is episode 455. So if there's a topic that you're interested in, we have likely covered it. Obviously, we haven't covered everything. And please send me your suggestions. But if you just type it into the search box, it really is. I'm really thrilled with my web folks, I'm stuttering around because I had nothing to do with it. But I asked them to make me a great search. And they did. And you could also search by topic by date, whatever suits your needs. So please check that out.
We have some great shows coming up. Boy, there's so much going on these days every Wednesday I do in the News Live and that's on social media. And then I turn that into a podcast episode. That's every Friday five or six minutes of just headlines and in the news stuff for the diabetes community. Next week, you should be hearing from ever since I'm working on that episode right now we're going to talk about their longer where and you know, a lot of you already have commented in the Facebook group about you know, worries about this device. And who was it for? I gotta tell you, Benny is super eager for this because of wrestling and his sports. Think about a CGM that you can't knock off, right. So I'm not here to endorse them. But I am here to say let's talk to them and find out more about this option. We're also going to talk about Tandem and waiting because while they just got FDA approval, they have an earnings call later this month that I want to wait until after that because some interesting things may come out. So we'll be speaking to them. And that episode will probably air in early March.
But in between those two, I have an interview with the folks at Pixar and I have a great story about why there is diabetes technology featured in turning red. This is the newest Pixar movie debuting on Disney plus in March. And so look for that episode, probably right before the movie comes out. We've taped it, I have to hold it sometimes these things are embargoed, and this was one of those cases. So really excited to bring that to you. All right, 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 soon Until then be kind to yourself.

Benny 39:43
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Feb 8, 2022

People with diabetes were encouraged to get a COVID vaccine early on when the shots were released. But what happens when you live with type 1 and another condition where the vaccine recommendation is more complicated?

Molly Schreiber lives with T1D and rheumatoid arthritis. Her doctors told her to absolutely NOT get a COVID vaccine due to treatment she was taking for the second condition. She was able to eventually get vaccinated then, despite taking precautions, she and her entire family got the Omicron variant. They’re fine now and Molly has a lot of good info to share. She also has several family members with type 1 and has a lot to say about how we care for older people with T1D.

Molly works at the Community Manager for Savvy Coop.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Type 1 Diabetes with Other Autoimmune Diseases 

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Episode Transcription Below (or coming soon!)

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DEXCOM

Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921, where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, people with diabetes were encouraged to get a COVID vaccine early on, when they were released. But what happens when you live with type one and another condition where the vaccine recommendation is… complicated?
Molly Schreiber 0:35
And I messaged my rheumatologist and I said great news. My hospital has the vaccine in I can get an appointment. You know, I was super excited. And she called my cell phone immediately and says You could not get that vaccine and it was a gut punch. What do you mean, I can't get this vaccine,

Stacey Simms 0:52
Molly Schreiber lives with type one and rheumatoid arthritis, she was able to eventually get vaccinated, then despite taking precautions, she and her entire family off the omicron variant, they're fine. And she has a lot of good information to share. 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, always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And one of those people had a really bad low last night, as most of you know. And if you are new, I will explain my son, Benny was diagnosed with type one right before he turned two, he is now 17. We use the control IQ system with Tandem and Dexcom. And I gotta tell you, it has been a while since that urgent low has gone off on my Dexcom app. And I really don't remember the last time he had an urgent low that he didn't treat pretty quickly. You know, he very rarely asks for my help. We are at the point now where I have turned off all of the Dexcom alerts except that urgent low.
But in the middle of the night, it was like one o'clock in the morning it went off. And I don't know, you know, usually I would have waited and just said maybe he's got it. He always had stuff in his room. But it was It wasn't in 55 It was 42. So I said, you know, I'm gonna just go check on him. And they brought up a juice box like I have done a bajillion times, you know, when he was little, it's so funny. I gotta say, you know, the juice box used to seem like a big deal, a big amount, I should say. But it looks so tiny. He’s now like six feet tall, but I brought it upstairs.
And it was immediately clear that this was a real low. This wasn't a compression low. He wasn't leaning on the Dexcom. He was disoriented, he was sweaty, he was super hungry. So he drank the juice box, I got him some crackers. And then I sat with him for a little bit. And he started to kind of come back to himself. But he was so hungry. And you know what this is like, I don't know about you. But he was sometimes I really try if I'm with him, which isn't the case all the time anymore. I tried to say you know, you've had you've had your 15 or 20 carbs or you know, when he was little you had your four to eight carbs. And let's just sit because you know, you're going to be okay. Now, you know, you're not going to be hungry in 15 to 20 minutes. But man, that urge to eat. I mean, I know his brain is screaming at him. So I was like, you know, forget this. I went downstairs and I got him some more food. I figured I can always give him more insulin for it and who knows. He just really still felt bad. So we overtreated which, again, we haven't done it a long time totally overtreated. And, you know, he finally felt better and was able to go back to bed. But you know, my adrenaline is like, through the roof. I finally did get back to bed. But I'm sure that he felt much worse than I did. I oh my gosh, it's been a long, long time. I'm sure many of you were asking, Well, what happened? The truth is I don't know what happened. I didn't ask him in the moment. I mean, he's 42 he's not gonna have a coherent answer. I don't really care. I just wanted to treat the low and then go back to sleep.
I’ll ask him tonight at dinner but I gotta tell you at this point, 15 years in the answer he has diabetes is good enough for me. My guess is he ate something and gave too much insulin. Or I know we put a new site on. Maybe that was like a super absorbent site. You know, sometimes that happens, you just hit that sweet spot. And it's just the insulin flows somehow a lot better in that place. If it was really interesting or unusual, I will report back but I only bring it up because it has been a long time. Since I've had to treat a low like that in the middle of the night. It made me remember all those times, you know, not just before control IQ but before Dexcom when that would have been you know a finger stick every five minutes while we were waiting for him to come up and you know, very different times. I hope we all get a better night's sleep tonight. And like I said, if it's anything really interesting or if there's a follow up here, I will let you know.
Alright, this week's guest is somebody I've known for a long time through the diabetes online community. She certainly remembers a different type of technology. We did get to meet in person at a healthy voices conference in Chicago nearly six years ago. We talked about that at the very end of the interview. That was so cool. Hold that conference was freezing. But man, I would love to go back to more in person stuff even if it's freezing. Molly Schreiber was diagnosed with type 1 diabetes as a child in 1989. Her father, grandfather and a cousin all lived with type one as well. In 2018, she was also diagnosed with rheumatoid arthritis. I follow Molly on social media, she's been very open about her struggle, not just with these conditions, but with how difficult COVID has been for her. You know, with autoimmune stuff, you want to be more careful. But her art a diagnosis rheumatoid arthritis diagnosis made getting the vaccine a tough decision. And then when her entire family did catch COVID During this omicron search, it made that more difficult to Molly has been a longtime blogger in the diabetes community. And I'll link up some of what she has written. She is currently the community director for savvy cooperative, and she explains more about that as we talk. I do want to say, you know, Molly really is an incredibly positive person, but she's not a Pollyanna. She keeps it real. And it was great to catch up.
Molly, welcome to the show. Thanks for coming on.

Molly Schreiber 6:08
Thanks for having me.
Stacey Simms 6:09
All right. Before we jump in, or talk about anything, I have to ask, how are you? How are you feeling as your family

Molly Schreiber 6:14
were okay, we all, you know, had the pleasure of having COVID Funnily enough, we pulled my daughter from college because it was getting pretty intense down there and gave her COVID When she got home, so really failed there. But no, we're all doing a lot better. It's been almost three weeks now. So

Stacey Simms 6:31
yeah, I'm glad. And um, you know, there's an awful lot to talk about leading up to that diagnosis, but I'm glad everybody's doing okay. Scary stuff. Yeah, this is usually where I asked people to tell us their diagnosis story. And I'd like to start there with one additional question if I could, because you don't live with just and I put that in quotes with just diabetes. Right?

Molly Schreiber 6:50
Right. I was diagnosed with type one diabetes, when I was a kid, when I was back in 1989, I'll date myself, and I knew a lot about the disease. So my father had type one or had type one and his father and then my paternal cousin. So type 1 diabetes was very much in my life, you know, needles were around testing. At that point, testing blood was not as common as urine. But um, you know, it wasn't a shock, I should say, a lifestyle change. We were already kind of living that. But fast forward to about 10 years ago, I was diagnosed with rheumatoid arthritis, which, yeah, the just living with both is definitely a challenge. They don't, you know, unfortunately, autoimmune diseases can come, you know, in pairs or in groups, you tend to be a collector, but they don't necessarily get treated, or even you have similar symptoms to each other diabetes and RA,

Stacey Simms 7:51
would you mind and Pardon my ignorance? Would you mind talking about RA for a moment what that is?

Molly Schreiber 7:56
Yeah, so the easy way to sort of translate it to the diabetes community is instead of attacking I slit cells, my immune system is attacking my joints, and specifically the synovial membrane, which is sort of that lubricating fluid that's in your joints is not immune disease, as well. So comes from the same family. As you know, and most of your listeners, we don't really know why yet, it happened to me very, I would say suddenly, and I had sort of just an elbow pain thought I grabbed a bag, wrong, you know, off of an airplane on on a weekend trip and just thought, I've asked to push that bag too hard or done something and within a month, I couldn't straighten that elbow. So my arm was bad. And I got to have the fun experience of doctors telling me I was favoring it or had tennis elbow or all sorts of fun things. But within a few weeks, I couldn't walk downstairs and I was sitting because my feet and my knees and just did not then did not work. And I quickly went to the doctor and just said something's really wrong. And unlike type one where you get a blood test, and you know, if your blood sugar is a certain number, there's a pretty good chance you know that you're going to be diagnosed with diabetes with RA, there is a blood test. Lucky for me, I tested positive but plenty of your listeners if they have RA they not not everyone test positive. So you could go down a very long treatment of trying to figure out what's wrong. What is the treatment? Is there treatment? There is there's a couple different treatments, so definitely medication. So you would start with what are called disease modifiers and the most common one that people might know of is called methotrexate, it can be used all these drugs can be used for cancer, but these are used in the RA and similar disease spaces in much smaller doses. So yes, you may if you look them up, see them referred to as chemo that they are just given in lesser doses. So we have those drugs. Most of the time. They don't do enough and you need something that's called a biologic and There are quite a few options. To be honest, this was the hardest part for me. All right, is that I went from living with type one, you know, basically my whole life and there's one treatment, right? There's insulin, everybody takes it. You know, we might have the rare person. I'm sure everyone's heard of someone that was maybe allergic but you take it it works. Does it work perfectly? No real? No, that doesn't always work the same. But everybody takes it. But with a biologic. And with other treatments with these arthritis, autoimmune conditions, it's a gamble. You know, what commercial? Did you see that maybe you want to try that one is a literal question from your doctor. Wow, it is a true gamble of what's going to work. They don't know yet. Why some jobs work and some don't for people and what works for me, if you were to be diagnosed with RA, it might not work for you. It's just a complete gamble. And they don't last forever. So some people have had success for a long time. Others have tried multiple drugs because they lose efficacy. We'd like to say that the drug failed the patient. Patients like us are tend to sort of internalize it and say, Oh, I failed that one. But no, we're gonna say that the drug failed that

Stacey Simms 11:11
I'm pausing here, I'm just gonna kind of stuttering because I'm trying to figure out how to ask this. What I'm trying to say is, with type 1 diabetes, and RA, you're mentioning insulin, you're talking about biologics and other medication, any dangerous interactions, anything that you specifically have had to look out for.

Molly Schreiber 11:24
Yeah, so a couple different things. So one of the initial treatments for rheumatoid arthritis, and it can be a treatment that a lot of patients stay on are steroids. And so plenty, you know, if you have diabetes, and you've ever, you know, had even a horrible bronchitis or pneumonia, or maybe you've had to get a steroid injection, you know, that horrible boost, your blood sugar is going to take them after you have started either that steroid pack or you've had that injection, well, a lot of patients are on a long term dose of steroids. For me, that's simply not an option. And I say that for myself, because, to me, the the struggle of managing my blood sugar as well on them. And also just the feeling of being on them is not worth the side effect of the you know, I'm not getting enough bang for my buck, you know, with with a steroid, so it's not worth the added stress. That's not to say you can't manage steroids, you know, our pumps and our different basal rates and everything, do great things. And I even have a steroid profile in my pump. If for when things get bad, yes, I will go on them. I'm not going to be too prideful. But steroids are first line of defense, they make you feel better quick, they get you back to life, you know, and for me, there's that added habit of blood sugars. But then there's also that little piece of how we're susceptible to getting sick, you know, where our cold takes a little longer for us to recover from, you know, and when you're on these additional medications, you want to keep your blood sugar in check, because when it's not, you're feeling worse, and you're more susceptible to those complications. So there's just that added caveat, you know that you want to stay as healthy as possible, but you're on these drugs that are really, they're calming down your immune system, so it stops attacking you. But in that same breath, they're also not preventing you from getting sick.

Stacey Simms 13:17
I'm going to come back to your family's experience with type one as you listen, I don't want you to think that I'm going to skim over that we're definitely going to revisit that. But keeping our conversation about ra here with COVID. You are one of the first people I remember seeing on social media in my circle, certainly that was talking about issues with either being able to take the vaccine or wondering about being able to take a COVID vaccine. Is that because of the biologic or the medications or is because of the RA condition itself?

Molly Schreiber 13:48
Yeah, so it's a little bit more on the medication side, but a lot of patients again, are on a ton of different biologics. And so at the time when vaccines first came out late in December of 2020, as their confer hospital then and with that came with being eligible to get a vaccine early, which is great. Sounds wonderful, right? I was super excited that I was in a drug club or Texan or Texans are really strong line of defense. With Ra. It's used a lot with non Hodgkins lymphoma as well. It's pretty in terms of the drugs you could be on. It's a pretty heavy hitter, but when I went on it three years ago, I needed it. My disease was in a space that needed it and it worked. I just had an infusion. So vertex in isn't infused by logic. Some people get it once a year, the earliest you can get it is every four months to talk to infusions every four months and repeat. So I was on that schedule, and I'd had an infusion in October, and I messaged my rheumatologist and I said great news. My Hospital has the vaccine in I can get an appointment. Yeah, super excited. And she called my cell phone immediately and says You could not get that vaccine and it It was like a gut punch. What do you mean, I can't get this vaccine. And she said, look, the ACR, the American College of Rheumatology, you know, like a lot of us even still, to this day, we don't know everything, still trying to figure it all out right in terms of COVID. But they know that you need to at least be as far away from that biologic infusion injection as possible for the vaccine have a chance to work. And since I had just had it, I wouldn't be due for my next one until March or April. And she said, We got to try to get you to March or April. And there is a little bit of history behind this. So a lot of patients that have been on vertex in the flu vaccine, for example, doesn't work in one dose, sometimes it's recommended that they get two doses to be able to have an immune response. So they at that time, were kind of basing it on that. And so I waited. And it was incredibly frustrating. I'm pretty sure that's probably what you saw on my social channels, was that here's this thing that we've all been waiting for, with the promise of it, getting back to our lives, but also the promise for, you know, auto immunocompromised patients like myself to feel a little bit more safe, you know, we could get this vaccine and finally feel safe. And I just couldn't get it. And so I had to wait. And the only other thing that came with waiting as I went back into our sort of statewide system of trying to get an appointment, which I think everyone probably still have stories, I'm getting an appointment or getting a test and had to wait and get my initial vaccine. I got that in April, when I was earliest I can get an appointment.

Stacey Simms 16:40
I feel like I may have missed something. I'm sure you said it. Did you have to go off your medication and in order to get the shot to get the vaccine?

Molly Schreiber 16:47
Yeah, so with the toxin and retexe intakes, obviously, everything varies, but the the longer you can have it out of your body, the better. So your body can start, you know, kind of revamping and not being so suppressed. And so with vertex and they wanted me to try to wait six months, I sort of made my own compromise of April, it would have been nice. And with that came a discussion with my rheumatologist. And she frankly told me that she wasn't keeping any of her patients on this drug until COVID was sorted. And this was again a past discussion now, right? Right now it's as we know, we're not going to stay on this drug because of how unprotected you can be against these viruses that are popping up. And she and I agreed that since I still had some other options on the table, that I would try something else. And retexe in its place, obviously, if she had patients that truly, you know, it was the difference between walking and not or, you know, work and not she was not going to take the drug away from them. But we had to have a frank discussion and with our eye, again, back to what I said earlier to gamble when you take a medication, so it was another Okay, Let's gamble and see what this next one might do. While I was on one that was working.

Stacey Simms 18:10
And then after all of that, like many who were vaccinated and boosted buzz, you know, being very careful. Masking up. You got film Kron virus got you got omachron. So I hate to say like, what's your reaction? Because I think we would all have the same reaction. But you went through so much.

Right back to Molly in a moment, but first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not, it's not just that you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G six continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin you may be covered. To find out more about what that means. And if you qualify, check out dexcom.com/g six dash Medicare and I will link that up for this episode. You don't need to write it down. It will be in the show notes at the homepage at diabetes connections.com You're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it's dexcom.com/g six dash Medicare. Now back to Molly talking about her family's experience with COVID.

Molly Schreiber 19:37
So I'd had my two doses that are that had the Pfizer vaccine I had an April and May and then I actually got a third dose that they're not calling it a booster but a third dose and August because it wasn't that six months but they offered it to patients that were immunocompromised this is I know there's so much has come out from the FDA and the CDC this probably was a blip But that

Stacey Simms 20:02
now remember, right? Yes,

Molly Schreiber 20:04
it was a blip and but it was a big blip for me. And so I went and got a third dose all along. I had participated in a research study through Johns Hopkins, which I know a lot of patients have done in, they were just trying to see efficacy in the vaccine with patients with different kinds of autoimmune conditions or health conditions. And so they tested your antibodies before and after each of your vaccine doses. So with my first two, I didn't have any antibodies. I got my third dose so quickly, because I was so excited that happens hadn't been ready with their lab slips yet. So my rheumatologist tested me in November, and showed that I still didn't have antibodies. And I found that out the week before Thanksgiving, and she said, you know, you really need to just stay in your bubble. And I'm like, I've been in this bubble for a long time. But like I mentioned, I have a family. You know, my husband works at the airport, my son works, my daughter goes to college. But luckily, everyone, like you said, We're maths, they're all vaccinated and boosted. Everybody was good. We daughter's college was getting a rise in cases, and they switched exams to online. So my husband ran down and grabbed her right, the week and a half before Christmas. And then that Saturday before Christmas, we all thought a little off. And knowing that there are monoclonal antibodies that I could maybe get, if I were to get COVID, I've been instructed multiple times by all of my doctors, you know, you get these if you get COVID, call us, we took a test, my husband was positive, I was positive, my daughter and my son, and I didn't see it coming, like I said, grabbed my daughter and brought her home and gave her COVID. Right. At school, I really missed the mark as a parent on that one. But it's not a cold, it's not a bad cold. It's not what I guess a lot of people are sharing, at least it wasn't for my family. And I know that I mentioned that I didn't have any antibodies, but my family dead, they're healthy. They're my daughter's 18, perfectly healthy, and had the 102 Fever, the vomiting, the cough, the body aches like you couldn't imagine. And I the sounds so awful to say but they actually understand a little bit of what our eye fatigue is now, because it was so intense with with COVID that I just said, you know, when you felt like you didn't have that extra oomph to pull on. That's what it's like. So I did get a little taste of that. But now, you know, we're about three weeks out doing so much better. But I'd be lying if I didn't say it was a little scary, you know, at times, especially with where our health system is right now.

Stacey Simms 22:43
I'm so glad everyone is doing better. I know so little about Ra. So forgive me if this is a dumb question. Are there lingering issues or concerns that now you have to think about in terms of what medication you're able to take or anything like that, because of having COVID?

Molly Schreiber 22:57
There are so with my rheumatologist, we've been kind of you know, going back and forth. I'm incredibly thankful for portals because I could send messages whenever I had energy, it was great. She said that there's a couple things to be concerned about. She said that they've seen that a lot of patients with autoimmune conditions tend to shed the virus longer so that I'm going to say 10 days I know now it's five days, whatever it is, right? When you listen to this podcast, whatever amount of days it is that they're saying you need to quarantine for, they're saying that they're finding that patients like myself can shed it longer. So that is a concern for you know, if I were to say, Hey, I'm good and you know, go to the party I haven't gone to in many years, that's a concern for the public that the other thing is because I could still be shutting it. They're not sure when to start my biologic backup. And so basically, we're kind of going week to week my rheumatologist just wants to make sure I have zero symptoms, just not even a cough or runny nose. Nothing that could you know, taking something to oppress and suppress my immune system, you know, could trigger and so there's there's that but really, it's just the twofold wanting to keep others safe of them still shedding, you know the virus longer because like I said, we missed Christmas and my mom, you know, was like, well, when can I come up? And I'm like, I don't know. I just don't know and I'm never gonna put her at risk. So I think there's still as awful as it is so many unknowns right now.

Stacey Simms 24:34
How Okay, nosey question you don't have to answer How were your blood sugars? Was it difficult to manage? Did you do okay during all of this,

Molly Schreiber 24:41
so that is how I knew it was coming honestly, I think a lot of patients would probably identified that they could tell Oh, I should have known I was gonna I was getting sick, my blood sugar's are higher but my family got very sick that weekend. And on that Sunday, kind of boasting that the one with no in bodies just had a runny nose, you know? feeling great. And that night, my blood sugar started going up. And for me, you know, I'm home, I work from home. Like a lot of people, I kind of have a routine, you know, if I eat or drink, you know, that boring stuff that you can do with diabetes for a long time. And so my blood sugars are pretty good. Of course, there's random days for you're like, What in the world is happening, but this was consistent. This was, you know, I'm not eating something. And I'm just high, you know, it is just higher than normal. And the next morning that Monday, I woke up with 102 fever and felt awful. I actually used I mentioned earlier that I had a steroid personal profile in my pump for when I do get infusions, they come with that infuse steroids, and it has a higher basal rate and a little bit more of a carb ratio in there. And I put that on when I was sick. And so that helps with keeping my blood sugar's under control when I just wasn't feeling well enough to even deal with my pump. Honestly, I was very grateful that I already had that setup. Might be a little too aggressive. I'm not sure. But it was nice, because I don't think I would have had the energy to think through a whole new basil program.

Stacey Simms 26:13
Yeah, definitely. I totally understand that. And it's funny, as soon as you said, you look back at those blood sugars. Oh, yeah, I should have seen it coming. I mean, Vinnie said diabetes for 15 years. I can't tell you how many times we still say oh, yeah, three days?

Molly Schreiber 26:26
Oh, I still do. I've had it for over 30. And I'll be like, should I know that was coming? I've only been through this a million times. Right? Oh, it's always after during you're like, why am i Hi? She makes no sense. And then the next day or like,

Stacey Simms 26:42
you know? So, as you said, You've lived with type one for 30 years, you were diagnosed in a family that was familiar, but at a time you said 1989? Where I'm guessing, you know, my recollection, home meters are just being introduced that sort of thing. Tell me a little bit about your Dad's experience with type one, if you don't mind.

Molly Schreiber 27:01
Yeah, my dad. So my dad was diagnosed in the late 1950s. And so my dad was in the time of boiling needles of no blood sugar testing at all, a lot of guessing. He would say just living his life as a teenager without thinking much about diabetes. He got there serious about his diabetes a little bit later. But because he had sort of grown up in this non technology way of managing type one. He thought it was great that I eventually got meters, pumps and everything. But they weren't for him. CGM weren't for him, nothing was for him, he would see the value for me that it was never. But it's funny when I see that funny, but I look at kids now. You know, I remember. And it's still a fear, but it was a strong, you know, fear of my, my own children getting tightwad, you know, I just, you know, you don't want anyone to experience anything that they don't have to. And so looking back, you know, I didn't have a meter at school, because we had a home meter that sat in the bathroom, you know, I had a snack every day, you had to eat your snack at the same time. And I that was my like, big cool thing about having type one in elementary school, but I look back and you almost have a moment of going, how did I survive all that, like, I didn't have this thing beeping on May 24/7, to tell me what my blood sugar was doing. And I went to gym class and I, you know, I, I survived. And so I a lot of that, I'll look back on you know, when technology fails, or you know, a server's down and all this, I just think back to the fact that I would go to school all day, without a meter with a pack of graham crackers, you know. And I'm still here, and I'm okay. And my dad, on the other hand, my dad, he learned sort of a way that I think a lot of people with type one, including myself, you can kind of slip into where you're very regulated, you know, dinner has to be at 630 because your body has to eat it. You know, and our pumps and everything and our short acting insulin have really given us flexibility, but my father was very regimented, because that was how he survived. You know, that was the insulin they had that was knowing how much food to have in his body at certain times. And so even my husband jokes that family dinner time is 630 because when he came into my family, that's what my father did. That's when he had to take insulin.

Stacey Simms 29:34
Did you say your grandfather had type one? Yeah. So

Molly Schreiber 29:37
my, my grandfather, my dad's father had type one as well. He passed away, right? Shortly before I was diagnosed with type one due to complications, but you know, it's so varied. I don't really even know. At that point. He never would have even experienced a glucose meter.

Stacey Simms 29:56
He diagnosed you know, the date or the year.

Molly Schreiber 29:59
So my dad was born in 48, January of 48. And I believe his father was mid 20s, when he was born so early, a long time ago, and so my dad got it. They used to tell him that diabetes always skipped a generation and a sex. Have you heard that I'm sure you have. And so my cousin who's female has it as well. And that really fed into my dad's thinking of that my dad was the oddball that if he hadn't gotten it, it would have fit the, you know, the mold would have followed the program, you know, but he really blamed himself that I got type one, he really, you know, for a long time, it was really hard for him, but he's also the one who knew to test my blood sugar. You know, my mom took me to the doctor 10 times, and I poison ivy that gave me type one of all the things I got poison ivy, and then just stopped eating and got out, went to the bathroom a million times, and my dad got frustrated and tested my blood sugar. So he didn't see it that way that he had saved me, he thought that he gave it to me. So it's a heavy emotional burden.

Stacey Simms 31:14
It's really hard. Yeah, such an emotional experience. And that's, you know, it's so difficult you think about the tools that that generation didn't have, and how they they did the best they could,

Molly Schreiber 31:22
yeah, so my dad, he, you know, had a bad low when he was living on his own. And this was back in 2015. And he fell and hit his head. And, you know, my father had had a onesies bill of five. And when I say that he lived a very regimented life, he did because that fear of, you know, what could happen if you didn't manage your diabetes was very prevalent, you know, for him growing up. And you know, he had laser eye surgery at Hopkins, when they were still testing on monkeys, like he had a very real fear of losing a limb and more, you know, really suffering. And so he managed himself extremely tightly. And that came with a lot of lows, you know, and we'll all say that your agency is only reflective, you know, of the broad range, you know, it doesn't show the 30s, you know, that you had, and even growing up, he had bad lows, I have many recollections of ambulances coming to the house. And so he had a bad low has had and was admitted to a nursing home, because he just wasn't 100% Ready to care for himself. So just rehab sort of the the problem is, and kind of mentioned this with technology. So we have the tech, right, we have glucose meters in every office everywhere. But even the nursing home staff didn't understand what type one was. So he would tell them, I need my insulin transferred from the hospital without any insulin, she would say, you know, be put down as non compliant. One of our favorite words, right, because he wouldn't eat because he knew his blood sugar was high, but they wouldn't test it, they wouldn't give him insulin, they thought he was just like a type two. And if he wasn't going to eat, he didn't need any insulin. And they would reference him and he said, it doesn't matter what type I am, I need insulin. To the point that, you know, he, no matter how much education we tried to provide, no matter how much he tried to provide, on his end, there was even one night he called an ambulance from his nursing home bed for insulin, because he needed insulin. And the true story is he ended up in DKA from this, and he passed away from it simply because nursing home staff and I'm not generalizing, I personally have not been in a nursing home, but I can only go by his his information of what's happened and others have shared, they simply didn't understand that insulin, you know, is, is air and water for us, you know, we need it, we cannot live without it, and ended up in DKA and didn't come back. And that all stemmed from lack of understanding diabetes, which has been around forever. I just mentioned my great career, my grandfather, it's been around a long time. And so it's really important to me and I, I've talked with a lot of fellow diabetics who are, you know, and early 40s. And we've talked and it's a real fear. And that kind of comes into COVID. You know, what if you end up in the hospital, and can't manage your own disease? And so I think that that's a real fear, even today, you know, if you get COVID, if God forbid, you know, need to be on a ventilator or just are unable to care for yourself what happened?

Stacey Simms 34:36
No, it's absolutely terrifying. And I know that sharing that story is not something that you do lightly. You know, it really is amazing to see these concerns. I don't know how well they're being addressed. All we can do is keep talking about them, and keep educating. So thanks for bringing that up. I do appreciate it.

Molly Schreiber 34:54
Yeah, I don't have the answer. Like you said that. I think we'll figure something out of everyone just shares and

Stacey Simms 35:00
Before I let you go, I do want to ask you about your job because you're, you know, we've been talking what we basically talked about for the last few minutes is patient advocacy. And that is something that you are you're doing in your job day to day with savvy, tell me a little bit about what this organization is and what you're doing.

Molly Schreiber 35:15
Yeah. So savvy, cooperative, founded by two patients to Jen is in the juvenile arthritis space. And Ronnie are other co owners, the cystic fibrosis space and like myself, like probably a lot of people you know, and even you to have had the pleasure of being at, you know, the different tables, you know, pharma tables, companies that are trying to make products better for, you know, all types of different health conditions. And eventually, like myself, Ronnie, and Jen found themselves looking around the table and you see the same faces. And I've met some great friends that way. But are, you know, are all the white women at the table really representing the patient voice of rheumatoid arthritis? You know, and we're being asked questions like, well, what does someone do you know, when they can't afford rent or medication, I am privileged enough to not know what that feels like. And a lot of people are in So Jen, and Ronnie just said, What can we do. And so they started this Co Op. And what that means by a co op is a co op is owned by its members. So we're literally a patient owned organization. And what we do is, quite simply, what I just said, is try to bring every voice to the table, try to have, you know, if a product is created for the HIV community within the HIV community to be at that table, creating that project, you know, and that product and medication and treatment. And so that's just like a very nutshell of what we do.
But we basically have people come to us, and they want to know more about a health condition, or they have an ideal treatment, or medication or an app, or a variety of things. And they asked us to find the people and maybe do the research and do the interviews, and at the end products and ideas and medications or treatments are being co created with the patient, rather than the patient at home seeing a commercial and going well, if they'd asked me, I would have told him that doesn't work. benefits, both the company and the patient. And thing I like to share that's a great example of what we do is a lot of people have heard of Amazon, I'm going to go ahead and assume and maybe even Alexa, and they did a study with us where they wanted to improve Alexa so that people would voice impairments, like stutters and different things could communicate better with her. And now they have a patch that anybody can get add into their Alexa. And it lets more people use that technologies here. And so that is just a small example. But I think it's a great one, you know, showing how something that they took to actual patients and had patients use and give feedback now benefits the greater world and all patients. And so that's what we do, I realize I give a very, you know, nutshell, I work in communities and the community director, which means I get to talk with patients and partners organizations all day, which is a great fit for me because as a patient, which is gathered by now, I really wouldn't want any patient to not feel like they're part of the community, and that they're alone in their journey or that their voice isn't important. So if you know one person hears this, and it's like I've already in diabetes, which I'll reference the great Rick Phillips did for me years ago, made me feel like I wasn't the only person that had those conditions. And if that happens because of this will Stacy, you've done a huge job. I haven't been here.

Stacey Simms 38:57
I hope that happens. It's really as we've learned over the years, right? How just knowing that there's somebody else out there going through the same stuff makes a huge difference. Just one more checking if I could with your family. You mentioned you picked up your daughter, you know you wanted to keep from having coverage came home Scott COVID. How's everybody doing now?

Molly Schreiber 39:14
Everyone's doing okay, much, much better. But it's not lost on me that anyone can get this again at any time. So we're staying in a safe and our masked bubble for now.

Stacey Simms 39:25
Gosh, well, thank you so much for joining me it's so much fun to talk to you. I just you know I have to mention I remember when we first met I don't know why this just popped into my head maybe it's cuz I was I just miss traveling so much. Did we meet in Chicago

Molly Schreiber 39:37
at healthy freshmen airport? We I was

Stacey Simms 39:41
Yeah, I was wearing that blanket thing that I wear like really heavy winter coat anymore. Yeah, we met in the airport in Chicago. Geez.

Molly Schreiber 39:50
Yeah, that's where we met and I it was one of those great moments where you're like, I know you but now I actually know you you know like, it's like my honor. Lying knowledge and then by in person, which is the best because you really know people then

Stacey Simms 40:04
isn't that the time when there was this thing going around the internet, the kids probably call it a meme. But there's this thing going round where it was like, the only really good thing about the internet sometimes is when you meet someone in PR person that you know from online, it turns that first meeting from a handshake to a hug.

Molly Schreiber 40:20
Yes. That's what it is. Yeah. And I do now right now, I picture us waiting for our car together. years ago, too many years ago, because we've been traveling so long.

Stacey Simms 40:34
Oh, my gosh. All right. Well, here's to travel in the future. At some point, Molly, we will grab that cape blanket thing out of my deep recesses of my closet and we'll we'll meet again.

Molly Schreiber 40:45
Yes, we well.

Stacey Simms 40:51
You're listening to Diabetes Connections with Stacey Simms. I will link up more information about a lot of what Molly talked about there, including information about savvy cooperative, yes, that is the group that I have linked to in some emails. And in the Facebook group, a bunch of you have signed up to take part in their research studies. So if you're interested in that, be on the lookout, when it's relevant to our group, I will definitely share that with you. And sometimes there are opportunities to get paid, which is always nice.
It was fun to think about travel again, by talking to Molly and I have some things tentatively on the calendar, you know, you're always afraid now to you know, we got to make plans. But who knows. So I'm excited. In March, I should be going to Syracuse, I have an event at Syracuse University. This is an annual or at least it was before COVID and annual alumni event that I always have a lot of fun in. I'm trying to set up some kind of diabetes event as well, maybe for moms, maybe for families. So I'll keep you posted on that. I am talking to some local diabetes people in the Syracuse, Central New York area, and hopefully we can work something out.
Then at the beginning of April, friends for life Indianapolis is on registration is open. I still haven't pulled the trigger on that I haven't committed to going yet. But I'm pretty sure I'm going to maybe you can help me make up my mind. I think I'm going to be there. But regardless of me go if you're in that area, this is a great regional conference. And the hotel has like these train car rooms. It's a train station that's now a hotel. Definitely check that out. And looking down the road. There's gonna be some local events here in the Charlotte area in April and May and then it'll be friends for life in Orlando in July. So I'm hoping that there will be more in person events as the year goes on. Cross your fingers and hope we stay safe. Man, I'm not sure that it's I'm ready to say anything about a return to normalcy, but it would be a lot of fun to just see some people again and make those connections that you can make them online but there is just you know, as you know, something so different about him person, and I missed that. I miss that a lot.
Alright, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you for listening. Wednesday, it is in the news. Don't forget I do this every week. We are live on social media and then it becomes a podcast episode that'll be out on Friday, just five or six minutes of news in our community. And next week's interview. Have you heard about the Sigi pump? This is a brand new insulin pump. It looks like it's going to be a competitor to Omnipod. There's some really cool features. It's not here yet, but I'm talking to this company about why they are trying to bring it to the US as soon as next year. We'll see what happens with the FDA and everything else but man this pump is really cool. And I can't wait to tell you more about it. Alright, that is all I am Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.

Benny 43:44
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Nov 23, 2021

It’s time for one of our favorite episodes of the year! Wait Wait! Don’t Poke Me, the diabetes game show! Taped this time around for the Children with Diabetes Friends for Life fall conference.

If you’re familiar with NPR’s Wait Wait Don’t Tell Me, a lot of this will sound familiar, just with a diabetes twist! Our panelists tackle trivia, limericks and we try to "bluff the listener" with tales of diabetes in the wild. Can you guess which Olympian with T1D really had a wildlife encounter?

Big thanks to our panelists: Nia Grant, Kyle Banks and Matt Point. They all have a connection for FFL and took time out of their busy schedules to goof off with me. There is a video version of this show over on our YouTube channel if you prefer to play along over there.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode transcription coming soon

Nov 16, 2021

With Thanksgiving almost here and the winter holidays around the corner, we know that diabetes stress is about to ratchet way up. The D-Moms are here to help! Moira McCarthy joins Stacey to talk about everything from holiday travel, long car rides, well meaning relatives and holiday gifts centered on T1D. And of course, FOOD!

Get advice to keep your children with T1D safe and happy so you can make terrific memories without freaking out about "perfect" blood sugars.

Previous D-Mom Holiday advice here

Adults with T1D give their take on the holidays: 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription below: 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:20

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:26

This week, Thanksgiving is almost here and many holidays just around the corner. Ask the D moms is here to help more McCarthy and I answer your questions and share our own stories to help you make more wonderful memories with less stress, even if that means doing things differently for a special occasion.

 

Moira McCarthy  0:44

And the reality is in this long, long, long, long, long lifetime marathon diabetes, you need to just chill a mile here and there. And by doing this and saying to your children, we're going to turn this off. This is okay. Don't worry about it. You're fine. You're modeling that for them and you're giving them the confidence and the courage to know that they can be okay. Yeah,

 

Stacey Simms  1:06

she said turn this off. She's talking about something I dare to say and do about Benny's CGM. We also talk about long car rides well-meaning relatives and holiday gifts centered on diabetes.

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'm your host Stacey Simms always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And yes, this time of year. I mean, it's the holidays are stressful without diabetes, right. But I'm already seeing in my local group, the stress ratcheting up, somebody said to me the other day that they feel like even though they're not necessarily doing more than they did before the pandemic as more people are venturing out and traveling. They feel like they're really busy. And I think a lot of it has to do with the fact that we haven't been very busy for the last year and a half, really. So there's gonna be more pressure on this holiday season. There's going to be more travel, there's going to be I don't know, it'll feel like higher stakes and especially if you are new to type one, that first year those first holidays, those first milestones are incredibly stressful. So Moira and I are here to help you out you probably already know. But just in case Moira McCarthy is a dear friend of mine. She is the author of many books about raising kids with diabetes, including the amazing raising teens with diabetes, which has that fabulous photo of a teen rolling her eyes right on the cover. I love that cover. You'll hear how long her daughter Lauren has lived with type one. She's a very successful adult now living on her own. And if you are brand new, my son Ben, he was diagnosed almost 15 years ago. He is almost 17, which is really hard to believe so most of my stories have to do with the early years. We're not out of the teens yet, and Moira will help kind of pick it up from there. And I always look to her for guidance as well.

One funny thing about Thanksgiving this year, we have a set menu, right? We have our traditions. My husband is the cook in the family and we've always hosted Thanksgiving. He does something a little different every year, but it's really up to him. But Benny has been working in a grocery store for the past six or seven months now. And he is really jonesing for a sweet potato casserole with marshmallows, which we don't usually do nothing do with diabetes. It's just not our style. We generally save the marshmallows for dessert. But my mom who makes our sweet potato casserole every year has valiantly stepped up and says she will make one for him. Because at the grocery store. He has been seeing the display and he's like Mom, it's just sweet potatoes, brown sugar, sweet potatoes, marshmallows, sweet potatoes, brown sugar, like they have this. And he took a picture that I saw the last time I was there. I mean, it's one whole side of a produce display. So this poor kid, he is really dying for that that marketing worked on him. He wants those marshmallows. My daughter is the canned cranberry sauce person, right. You know you make that beautiful, homemade cranberry sauce with the whole cranberries. Are you you boil it down? No, we have to have it in the can with the jelly lines on it. I prefer that as well. I have to admit. Alright, Moira and I talking about real stuff just a moment.

But first Diabetes Connections is brought to you by Gvoke Hypopen. Our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing – we’re usually able to treat those with fact acting glucose tabs or juice. But a very low blood sugar can be very frightening – which is why I’m so glad there’s a different option for emergency glucagon. It’s Gvoke Hypopen. Gvoke HypoPen is premixed and ready to go, with no visible needle. You pull off the red cap and push the yellow end onto bare skin – and hold it for 5 seconds. That’s it. Find out more – go to diabetes dash connections dot com and click on the Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma – visit gvoke glucagon dot com slash risk.

 

Moira, welcome back. I am so excited to talk to you What a week. I didn't even think about this when we planned. This is a big week for you and Lauren,

 

Moira McCarthy  5:04

it is yesterday, October 28. At 2:35pm was exactly her 24th diaversary. My daughter has had type 1 diabetes for 24 years. I can't even believe it. It's crazy.

 

Stacey Simms  5:22

But I have to ask you the time had you know the time.

 

Moira McCarthy  5:25

So I don't know why I know the time. We were at a doctor's appointment, and I know what time the appointment was. And I know what happened when I got there. So I don't know. It's just drilled into my head. And then there's people I meet that are like, I can't even tell you what day my kid was diagnosed. But for some reason, it just stuck with me. And as a little kid Lauren, like celebrating every year, so I sent her flowers yesterday. No, I don't care. 24 hours or so give us Do you

 

Stacey Simms  5:51

mind, maybe just a little bit of how she's doing maybe a little update. If this is someone's first time joining us for Deimos.

 

Moira McCarthy  5:57

I'd be happy to so my daughter Lauren was diagnosed. Well, I just said the date. So basically the beginning of kindergarten when she was six years old, right after her sixth birthday. I can remember feeling like the world was gonna end. But we had a really great medical team from the beginning who were saying to us, you are going to live the life you lived before. We're just going to add steps to it. And Lauren at six years old was saying I'm gonna lead you're not gonna, you know, let this hold me down. Now has it been all rainbows and butterflies? Absolutely not. We have had challenging days. We've had challenging weeks, we've had challenging years in her teen years. But right now, I think, well, first of all, what everybody cares about most is her physical health. She is 100% healthy. She has the labs that a person without diabetes would have if you checked, you know, her kidney and her eyes and everything else. Emotionally, she's really doing great. She has a long struggle with burnout. But I think she really has figured out a way to deal with that when she recognizes it coming up. And the most important lab of all I always say is she's incredibly happy. She has an amazing career and lives in the middle of Washington, DC all by herself, and I don't follow her on share. And I never worry about her. She has 8 million friends and I couldn't be prouder of her and the life that she is building as a young adult. So that's where she's at pretty good. Right? Despite diabetes, that's fine.

 

Stacey Simms  7:28

I love hearing that, as you know. And as you listen, you may know, I have followed Moira and Lauren story for many, many, many years since before more and I knew each other. So I always kind of look ahead. It's like my time machine of what could happen with us. Where could he go? And of course, he's never leaving our hometown, going to a scary place far away like DC he's gonna He's going to live here. And

 

Moira McCarthy  7:51

Sunday dinner every week

 

Stacey Simms  7:53

is nice. That's so nice. So I'm glad she's doing so well. Like you're doing so well. And you know, gosh, I heard something recently about diversity that made me smile. Instead of the diversity you're you're on the new level. So Lauren has reached level 24.

 

Moira McCarthy  8:08

I like that. That's really funny. And her boyfriend is a big video gamer so he'll like that.

 

Stacey Simms  8:13

Oh, that's good. Yeah, Benny's approaching level 15. And I am one of those people who I always have to look up the date. I just know it's the first weekend of December, but I never. Yeah. Alright, so we are in that time of year where it's not just our kids diver series. It is holiday time. And after I rewound the Halloween episode that we did a couple of years ago and I got a lot of questions and people asked us to do a follow up for Thanksgiving and looking ahead to the winter holidays. And I got some great questions. So I was wondering more if you wouldn't mind sharing though, you know, the first holiday season that you and Laura and your whole family had to address this you guys want a very different routine? Yeah, we can be a little more difficult but would you mind sharing what that was like that first year?

 

Moira McCarthy  8:59

I will and and I think it's good to hear because it can help people see how far we have come daily care for this disease. We may not have a cure yet, but what it looks like on a day to day basis is completely different. So Lauren was diagnosed in October so Thanksgiving was our first big holiday and I remember we were going to my in laws and back then you took a moderate acting or we called it long acting, but it was really middle acting insulin called NPH that peaked a bunch of times during the day and then you took regular which you had to take it wait 30 minutes and then eat exactly what you had dose for it exactly 30 minutes which was super fun with a six year old child I will tell you and no waiting in between. So I had reached out to my in laws ahead of time and asked them if they could work the meal around the time that it would work best for her to eat and they said yes and I I move some things around with A doctor to kind of compromise with them, you know, so we changed what time we gave everything starting, like two days before to be ready for Thanksgiving. And then we showed up and they were like, oh, yeah, we decided on a different time. Oh my gosh, the world is ending. But the world didn't end. You know, we figured it out. We got through it. What I will say for these holidays, for people who are new to it, it's not always going to feel this scary and confusing and daunting. I think the first 12 months, you go through every holiday, every special event, every family tradition for first time. And then the second year, you're like, Oh, I remember this from last year, and it gets a little better. And then the third year, you're, you're sailing. That's my theory, and I'm sticking to it.

 

Stacey Simms  10:43

I would absolutely agree with that. I also kind of suffered and I'll say suffered from this feeling out of the box, that it had to be perfect. Because I remember one just show everybody that we were okay. Especially my mom, I wanted her to not worry. And know that we were we were just fine. And for some reason that got tangled up in my brain by thinking this has to go perfectly and I can't make a mistake. And of course that lasted about three

 

Moira McCarthy  11:06

seconds. Yeah, we're really with a toddler with type one, and you want to put together a perfect Thanksgiving. Why don't we do that to ourselves, though, you know, but feelings of control at a time when you feel like you've lost control?

 

Stacey Simms  11:21

Night? Exactly. Alright, so let's get to some of the questions that came in. I got one in my local group. And this was about travel. And the question was, we're driving along distance. And I guess we could talk a little bit about flying or other modes of transportation. But this particular case, we're driving along distance, you know, six or seven hours to a relative's house. Any ideas or tips for helping me and the question here was about stable blood sugars. But I'm also going to kind of throw in there. How do I make this trip? easier on the whole family? Yeah, I'm I have a lot of ideas that maybe you do too.

 

Moira McCarthy  11:56

Well. So I guess my first idea would be for special occasions and events, stable blood sugars aren't the most important thing ever. I don't think there's anything wrong with trying, of course, we want to try but the first thing I'd say is if it doesn't go perfectly, that's perfectly fine. I am quite sure if you ask your medical team to help you with the plan. That is one of the things they will say to you. That's the first thing. So I mean, what did you do on long car rides? For us it I don't remember it impacting her blood sugar that much, you definitely have to have snacks in the car and like more than you ever think you're going to need in your life, because you never know when you're going to get stuck in a traffic jam from a car accident or something like that. You know what it is be prepared, and then you don't need it. We tend as a family, not just for the person with diabetes, but for everyone to try to stop every 60 minutes and get out of the car and stretch and move around and breathe fresh air and then get back in. I think that helps

 

Stacey Simms  12:56

us How about depressive we don't my husband would have fit? No. So in my

 

Moira McCarthy  13:01

father, he would never do that. That's probably why I do it. I grew up driving from Minnesota to Massachusetts and like never being allowed to get out of the car. So

 

Stacey Simms  13:10

I would say for us we actually did struggle a lot with long car rides, because we did a lot of trips, especially to my parents in Florida, which is like a nine or 10 hour road trip. And we found that Benny's blood sugar would go very high. Just you know, an hour or two in the car and looking back, it's probably because toddlers never stopped moving. So his insulin dosage was all based on constant activity. So when he was sitting still, just looking back that's my assumption. Also, as you mentioned, you know everybody's eating in the car

 

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Now back to the D mom's and I'm talking about what we did when we realized Benny's blood sugar would always go pretty high in the car.

What we did was talk to our endocrinologist about adjusting doses giving more insulin when he was in the car, giving more insulin for food when he was in the car. And that was a real trial and error for us because, you know we have to be really conservative about that you're not going to be changing basal rates by enormous amounts and so it may not quote unquote work the first time you do it, but I think you know we're doing Talking about stable blood sugars, I hope that this person means is like maybe kind of sort of in range. You know, when I see somebody talking about stable blood sugars, I usually think like, it's not going to be a steady line at 95, right? We're just trying to keep them from skyrocketing and staying there. And even if that happens, which happened to us a ton, it's fine, and you fix it. When the baby was younger, and the kids were younger, I was much more mindful about healthy eating. You know, they're 19 and 16. And it's like, they buy half their own food. Now anyway, I don't know what they're eating. But we used to get coolers the big cooler, and fill it with, you know, healthy fruits and veggies and hard boiled eggs and carrot sticks. And you know, and then of course, everybody would want to stop for fast food and ruin everything. Right?

 

Moira McCarthy  15:39

So I made the assumption, and perhaps I shouldn't have that by stable, she meant within that range. If this mom is suggesting that her child should have a straight line across my answers quite different. I have no idea going on the assumption that what she means is within their range. And my answer was based on that what I meant was, if you go above your range, or below your range, I think it's okay. I don't think that if you're going to celebrate with a family, the most important thing is, is staying in your blood sugar range, I think the most important thing is enjoying the time and loving your cousin's and running around and having fun and staying within a an area that is safe. And by safe. I mean, you're not you don't need to get in an ambulance, I guess. And maybe my advice would be talk to your medical team, take some ideas that we have on your idea, I think that's a great idea. My only caveat would be the doctors probably going to want you to err on the side of your child being hired. The first time you do this, as you mentioned, you did it after some trial and error, I'm not sure a new parent to diabetes should just, you know dial way up on their kids insulin because they're going to be in the car for nine hours, I think you should take it slowly and go a time or two or three and see what happens. And then make decisions like that after that. But for now talk to your team. They're they're going to say what I said, and they're going to support you and say, Don't worry about going out of range. You know how to do corrections, here's when and here's why to do a correction and then take it from there.

 

Stacey Simms  17:12

And like you said, some kids sit in the car and nothing happens. Right? They don't go super high. That's why can't do

 

Moira McCarthy  17:17

assumption, right. That's why you have to wait and see what happens. One quick

 

Stacey Simms  17:22

thing about the car that I learned the hard way you mentioned about you know, be prepared for traffic be prepared for you know, delays, if you have and we all do I think have a you know a diabetes kit. Make sure it's where you can reach it, especially if your child is very young, right? I mean, there's a lot of kids, they're older, they can have it the backseat with them. I'll never forget packing everything we needed and leaving it in the trunk or like the way back of the minivan. And then we were delayed. And I'm like I need a new inset like says it was leaking, or we'd like crawl through the car.

 

Moira McCarthy  17:54

That's a really good tip. So put it

 

Stacey Simms  17:57

up to the front seat with your pack, even if you just pack a couple of things. And we had so many car adventures. Okay, the next question, I loved this one, because this just I could picture this one I know you can do more. So Deborah said we are in the first year of diagnosis, I just realized I don't know what to do about our Christmas cookie tradition. We make a bunch and give them to relatives we usually eat as we go. Can we still do this with diabetes child is eight and is on multiple daily injections, so no insulin pump yet.

 

Moira McCarthy  18:26

So my answer is eat all the cookies, bake all the cookies, visit all the friends have all the fun, click your fingers if you want to. But then wash your hands, have all the fun and check in with your child's doctor. And what they're going to say is go do all that check at the end of all the fun. If you need a correction, here's what we'd like you to correct. And here's what we'd like you not to correct for they may not want you to correct because sometimes these things involve a little adrenaline high. And again, first times you have to see what's going on. But just have all the fun. Fix it later. If your child gets high during it, it's no big deal. If they get low, you've got cookies. There's an old saying it started with Kelly crewneck, who's a very well known person on the diabetes world on the internet. And she said people with diabetes can't have cookies, dot dot dot with poison in them. Right? The only cookies you can't have.

 

Stacey Simms  19:26

I think that's fantastic. And it took me back listening to that about we know we don't have a Christmas cookie tradition. But we certainly you know, I think most people with little kids love to bake. And it's just such a fun activity to do with them. And in the first couple of weeks with shots, it was so difficult. You know, Binney ran away from us. He didn't want anything to do with it. But after a little while, he didn't really care as long as we didn't make a big deal and make him stop what he was doing. So and we bought after, which I know is like bananas that people admit to bolusing after these days, but I think it's so much less

 

Moira McCarthy  20:00

Streisand gets really super smart, particularly with a small child.

 

Stacey Simms  20:04

And so for something like this, like we would bake, and then I would kind of try to estimate like, what did he licked the spoon? Did he eat the crumbs? You know, when you do a guess? And in my case, I would always get a little less because he was teeny tiny. And then we would eat the cookie, and a couple hours later, we would correct and move on. Now. I don't know, I feel like the fun as you said, the memories of that time, you know, outweighed the quote, unquote, out of range blood sugar, I'm sure his blood sugar went out of range. And he might have been low, because they sometimes they just get really excited. And you know, he might have been high, but he's, they're healthy.

 

Moira McCarthy  20:39

You know what, I think this, this mom, and anyone who's considering these kind of questions over the holidays should think about too, when I look back on Lauren's life, these 24 years with type one included, I don't remember that her blood sugar went higher low. I don't remember what her diabetes did one day, I remember that the cookie swap was fun. And so that's why I think it's important to focus on the fun, within reason with a kid with diabetes, you know,

 

Stacey Simms  21:12

oh, yeah, that's a great way to put it. And I'm realizing as he gets older, I have a lot of those same feelings. I'm so glad it didn't stop us. I'm sure at the time. My heart was pounding, right, especially at first, I'm sure I was worried. I'm sure I was thinking, Am I doing this the right way. But look, you know, you have those fabulous pictures and those great memories. So that's a great way to put it. Alright, so let's talk about well meaning relatives. More Hi, Moira. And Stacy. My aunt thinks she knows everything about diabetes. She has type two and is always lecturing me about not letting my second grader eat, quote, bad foods. Holidays are the worst. I'm sorry to laugh, because she wants us to have sugar free desserts. There's so much going on. In that question.

 

Moira McCarthy  21:59

Bless her heart, right. You know, I mean, what do you do? It would depend on what kind of person she is. And if they have, if they have a relationship that she could, I would call her ahead of time and say, Look, we're working on adjusting Stevie's life, whatever the child is, and, and there's a lot of things he's dealing with right now. So I'm just asking you, if you have anything you want to say about it? Could you say it to me now over the phone before we go, and let's just avoid talking about diabetes other than Hey, how you feeling? I'm really glad you're doing well at the holiday because I don't want him to feel sad when he has all this on his mind. That's a great way to put it. Who knows what she'll do. Right, right.

 

Stacey Simms  22:45

I mean, you have you have well meaning relatives who want to help you have nosy relatives who think they're helping, it all depends on my mother for the first year or two she wants to make she makes one of those sweet potato casseroles, not always with marshmallows, but it's got a ton of sugar in it. And so she made it sugar free. And I didn't really notice but it's not something Vinnie was going to eat much of anyway. Yeah, when he was he was three at his first Thanksgiving with diabetes. But she meant well, but what I found worked over the years, and I still use this, even though he's his own advocate. Now, I really found that saying, Our doctor says, which I made up, but our doctor says helped everything. So I would say to somebody like this. Oh, you know, thank you so much for thinking about my son. I really appreciate it. I gotta tell you things with diabetes have changed so much now. And our doctor says that he can eat these foods and as long as we can dose with insulin, you know, we know what we're doing. He's helping us or our doctor says that Thanksgiving should be a date, like every other day or whatever it is. But people would never listen to me. Listen to what my doctor

 

Moira McCarthy  23:46

says my my words for that was always her medical team. Yeah. sound very official, our medical team is me. But they don't need to know that. The one thing I'll say, though, is it's also okay, if it's not super aggressive, and really out of line. I think it's also okay to teach our children to show some people a little grace. And sometimes and all this even when people are wrong, maybe at the family thanksgiving, or Hanukkah, or whatever party isn't the time to say, Do you know what I mean? Great. And so if someone makes a sugar free thing, and your kid hates sugar free, you say to your kid, please just put a tiny slice of that on your plate and then push a couple pieces around under something. And it'll be fine. They met Well, yeah, you know, yeah, say and then afterwards, you can say hey, he really liked that. But FYI, next time, you don't even need to do that make the same delicious pie, but you don't need to make it sugar free. Right

 

Stacey Simms  24:41

on everything. And that's a good point. Because we're so in our society today, we're so ready to fight. We're so ready to be on the defensive. And so I think that that's a great point just to be able to say we really appreciate it. We know how you meant it, you know, just thanks and then have the discussion later on. Yeah,

 

Moira McCarthy  24:57

but if they're over the top aggressive about about telling your child what they do wrong with their diabetes, then you need to have a conversation ahead of time. That's right.

 

Stacey Simms  25:04

Or you know, even in the moment if this sometimes you see, you know, I made this for these kids who don't have diabetes and look at this wonderful vegetable plate I made for your child like they're having cupcakes, but you could have the carrot that it's okay.

 

Moira McCarthy  25:17

It just jello Jaguars. My daughter was locked up. I always have to bring a tray of jello jugglers This is before acting. And

 

Stacey Simms  25:25

that is so funny. I'm so sorry for sugary jello. jigglers Woohoo. Oh, my gosh. Okay, another question. How do I dose for all of the grazing that goes on during Thanksgiving and holiday gatherings? This is kind of similar to the Christmas cookies, or I would think our answer is going to be but in some homes, right? It's not just one set meal. It's we showed up and we're starting to eat and we don't stop for seven hours. Oh, yeah.

 

Moira McCarthy  25:51

My house isn't that yours?

 

Stacey Simms  25:53

Isn't? No, no, no.

 

Moira McCarthy  25:57

Not every house was like that on a holiday. Seriously, this is interesting. All right, well, I guess I'll answer this first, then talk to your medical team. Ask them about planning different times during the day for check ins. And then just let your child have what they're going to have. And at the check in times that you agree with your doctor, it may be every two hours, it may be every three hours, it may be twice I don't know. They'll they'll help you decide. You see where they're at. You look at what's going on what they're going to be doing next. And then you do a correction of corrections needed. That's it.

 

Stacey Simms  26:31

Go, I'm going to add a layer to that. Yes, please do. For those who are addicted. I don't know anyone like this. I certainly have never been like this anyone who's addicted to their Dexcom. So if you're listening to more thinking, how am I supposed to check every two hours when the Dexcom or wherever three hours, whatever the most no more thinking how am I gonna check at those intervals, when my Dexcom is blaring every five minutes, okay, stay with me, people consider turning your Dexcom high alarm off, and then look at your child's Dexcom High Alert off, and then only looking at it as recommended by your care team. It will take away an enormous amount of stress. Even if your child goes high. And you bolus it's not going to happen right away. You know this, it takes a long time for insulin to work, right. So you're not really doing yourself any favors by checking it every five minutes. I know it's hard. Ask your doctor. But that has helped me more than the years when I was glued to it listening for this a lot.

 

Moira McCarthy  27:34

And you know, I think that's really wonderful advice. Because there's nothing wrong with freeing up the family to enjoy a good time. If it's so important to you that you keep them in a certain range and you want to watch it all day, then go ahead. But I think what you suggested and what you just said you do is such a good model for your child, because as you care for your child, you're modeling how they should care for themselves later. And the reality is in this long, long, long, long, long lifetime marathon diabetes, you need to just chill a mile here and there. And by doing this and saying to your children, we're going to turn this off, this is okay. Don't worry about it, you're fine. You're modeling that for them. And you're giving them the confidence and the courage to know that they can be okay. If they're not doing, you know, 150%. So I love that answer. Stacy, you get a gold star. Yeah,

 

Stacey Simms  28:34

it's funny to think about, but that's actually how we use Dexcom. And how everyone use Dexcom intil. Gosh, I'll probably get the year wrong. But until, let's say 2015 Because Dexcom share did not exist, right? So at school, our child would like many others basically used his Dexcom receiver as a no finger stick monitor. Right. So at the time of day were Benny would normally have done a finger stick, he just looked at the receiver showed it to his teacher. And that was it. We started using it like that. So I think it makes it a little easier if you come home from the hospital, like a lot of families do attuned to every alarm. These things may seem like an astronomical ask, but you really can do it. And I would also add with the grazing, we you know, we were grazing experts, because I had a two year old with type one who was diagnosed. I mean, a few years after Lauren, so you know, was not on that very regimented timing. So Benny could pretty much eat all day, like a normal two year old. I mean, obviously not all day, but you know what I mean? Several times a day, and we just had to give them fast acting. So it makes it it does make it a little more difficult, right? It's not but it's not something you do every single day, either. So I think that you know, you've got to kind of let go a little bit, but it's not harmful and it can make these ladies have these wonderful memories. Alright, and finally, this question, I'm a little stymied by this one. What's the Christmas present for a child with die? beedis

 

Moira McCarthy  30:01

Okay, a good Christmas present for a child with diabetes is what they put on their Christmas list. If you want to give diabetes related gifts for Christmas, that's all good and fine. I knew someone who gave their child quote unquote, their insulin pump for Christmas and like, their heart was in the right place, and the child felt great, but it just made me a little sad. I guess if your child puts insulin pump on their Christmas list, though, that's different. But even then I think I'd say no, Santa doesn't need to bring you medical stuff, we can just get that went whenever you need it. There are toys and animals and things like that. If someone's interested in actually, diabetesMine is having me do a list of them that's going to run in late November, early December. We can link that on this after Oh, that would be great. Like

 

Stacey Simms  30:54

the American Girl doll stuff and road kid kits. Fabulous.

 

Moira McCarthy  30:59

And then I don't mean that there's anything wrong with that stuff. I just think that you should give your child gifts that they want as a child, not as a child with diabetes. Yeah,

 

Stacey Simms  31:09

I think a lot of that depends on how your family celebrates and what gifts you're giving. We are We joked in our family for Hanukkah, when I was growing up, you would get everything from the toy that you really, really wanted to the dictionary that you did not ask for to the socks that you need it right so if your gift giving is like that mixed up, and it's you know, if your family expectation is that kids will get super useful stuff in all the kids not just the kid with diabetes, then I guess I could see it. But I'm with you, I think unless it's something really fun like one of those add on what your list is going to be made up but like, what are those stuffed pancreas like? silly things like that. And yeah, accessories for dolls and fun stuff. It's just like a useful medical thing. I think you've got to be very careful and know, the child like especially a parent to a kid is one thing but if you're like the fun and or you're the family friend thinking this will be a big hit. I just be a little careful. One of the things I saw in another group was you know, there's a newly diagnosed child which they get the family and the most popular response was don't get them anything quote diabetes related, get them fuzzy slippers, and a gift certificate for babysitting or you know a trip to the movies and get them something fun and engaging.

 

Moira McCarthy  32:22

Get them something normal and and pushing back on what you said I still even if my family did that stuff, I still wouldn't give my child like a box of syringes. So core. I like if you're giving your kids toothpaste for Christmas, because that's what you do, then give your kid with diabetes toothpaste for Christmas treats the same way you treat your other kids when it comes to gifts.

 

Stacey Simms  32:42

That's a good point. I think if anybody ever gave Benny any diabetes related gifts, and no one would ever mind my family would have ever done that. But

 

Moira McCarthy  32:49

one time in our family Yankee swap, I used a syringe box, like for the gift and whoever opened it thought it was syringes and we're like, I don't get it. And I'm like, Oh, for goodness sake. It's just a box.

 

Stacey Simms  33:03

Open it up. Is a Yankee swap like a Secret Santa.

 

Moira McCarthy  33:07

Yeah, kind of but you you could take gifts away from like a one white elephant. I don't know. I'm sorry. That's a white Jewish lady. It's like we're from different worlds, Stacy.

 

Stacey Simms  33:21

Oh, you New Englanders.

 

Moira McCarthy  33:24

Bless my heart.

 

Stacey Simms  33:26

We do have one funny story. So on Christmas day in Gosh, I'm looking back already. This was this is eight years ago. So on Christmas Day, we started the Dexcom. The very first time we ever used the G four platinum. Vinnie was nine. Oh no, the g4 Platinum pediatric. So Vinnie was nine years old. And we were sitting around a Christmas day at my mom's house like you do. And we said, let's start the Dexcom. Why don't we will put it on we had been instructed on how to do it. Of course, again, I don't know if I can emphasize this enough. We do not celebrate Christmas. I don't think I would do this. Christmas. So but we put it on and I will never forget because that was you know, Christmas Day. Gosh, so yeah. Merry Christmas kid. That was the big horrible insert or two.

 

Moira McCarthy  34:14

But then it could have Chinese food before the movie, right?

 

Stacey Simms  34:18

Really my house.

 

Moira McCarthy  34:21

I know you.

 

Stacey Simms  34:23

That's great. So normally at the end here, we talk about where we're going in the diabetes community. Of course, you know, there's no diabetes events going on now. And I'm really, really hoping they come back next year. But I mean, I'm doing some virtual events. I'm reaching out, but I cannot wait to be in person again more.

 

Moira McCarthy  34:39

I feel you. I can't believe I was just thinking about this the other day because my Facebook memory was, I guess right before the pandemic I was in Buffalo, New York speaking at a big diabetes event at this time and they were all these pictures and people posting about interesting things they learned and how happy they were going to be and I was like, oh, I want to go back somewhere. I think we're We're gonna see things start bubbling up I do believe friends for life is going on this summer I'm hoping I'll be there I haven't heard yet but um I know that's probably happening and I think JDRF is going to start doing some smaller half day programs in the near future knock on wood so I hope we're in the same place to Stacey that's what I hope not only we get out and speak but you and I are in the same place.

 

Stacey Simms  35:22

Yeah. Oh my god,

 

Moira McCarthy  35:23

it's all about us.

 

Stacey Simms  35:26

Why not? I was kind of pausing because I don't remember when we saw each other live to look that up. At the end of the show.

 

Moira McCarthy  35:33

I think it's been at least two years Stacy that's really weird.

 

Stacey Simms  35:37

It has to be it has to ah, I miss you.

 

Moira McCarthy  35:40

Me too. We talk every day practically. I miss you as a as a human life form.

 

Stacey Simms  35:50

Well, the next time we get together we can we can do a Yankee swap.

 

Moira McCarthy  35:52

Yeah. And and a white elephant, white elephant.

 

Stacey Simms  35:57

Well, if I don't speak to you have a wonderful Thanksgiving, enjoy your family and your adorable grandchildren. And give Lauren my best and tell everybody we said hi. Same here

 

Moira McCarthy  36:07

and make sure those kids yours know that I still think they're awesome.

 

Announcer  36:16

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  36:21

I will link up some information, including to an episode we did with adults with type one and their take on Thanksgiving. I'll put that in the show notes along with the transcription for this episode, you can always go to diabetes connections.com. Every episode starting in January of 2020 has a transcription. And there's lots more information there. I got to tell you more. And I make it sound pretty easy now, right? But those first couple of years, it's so stressful because you're trying to have a nice holiday. You're trying to project confidence, you know, we're doing great. Diabetes won't stop us. And then you're freaking out, you know, what did you eat? Should we pre bolus what's gonna happen now? Am I gonna be up all night? You know, it's, well, you know, who's got the carb count? Is it accurate? Spoiler, the carb count is never accurate. It's never accurate. I hope you know that. We're estimating everything, even packaged foods. Even somebody who weighs in measures, everything is a total guess, on carbohydrates. So just do the best you can. And it's you got to get through that I think you've just got to get through that experience. There is no other teacher like experience and diabetes, you've got to make mistakes, you've got to kind of be upset, you gotta be worried you got to get through it.

But if you let yourself I think as a parent, you really can get to a place where you're like sure marshmallows on sweet potatoes, we can figure that out and go from there. And if you hated my advice to turn the Dexcom off, let me know I would love to hear from you. You can yell at me all you want. Let me know if you try it though. And if it works for you, I don't want to cause more stress. I promise.

Diabetes Connections is brought to you by Dexcom. And hey, listen, I'm all about using the technology in a way that helps you thrive with diabetes. So when I say turn it off, it's not a knock on Dexcom. It's sharing how we use it to help us make great choices. Live well and be happy. I stand by that you know we have been using the Dexcom system since he was nine years old. We started back in December of 2013. And the system just keeps getting better. The Dexcom G six is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G six has 10 Day sensor where the applicator is so easy. I have not done one insertion since we got it but he does them all himself, which is a huge change from the previous iteration. He's a busy kid, knowing that he can just take a quick glance at his blood glucose to make better treatment decisions is reassuring. Of course we still love the alerts and alarms and that we can set them and turn them off how we want. If your glucose alerts and readings for the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections.com and click on the Dexcom logo.

A couple of quick housekeeping notes we will have a regular episode next week. Our regular episodes are on Tuesdays. So we will have one for you next week. We will not have an in the news edition of Diabetes Connections. Thanksgiving week though. I will not be doing that live on Wednesday and there will not be an episode Friday the 26th I will say if anything really big happens if we get an FDA approval, you know something like that. I'll probably pop on and give you an update. I you know, I know we're all waiting for something so I can't promise I won't do it. It's not it's like the news person in me I was in you know, I've been doing this since I was 19. So if something breaks, I'm gonna have to jump on. Even if Slade is like, you know, making turkey behind me. We'll figure it out. But right now again this week, the week of the 16th. We will have the regular in the news on Wednesday, which will become an audio only podcast on Friday. The following week. We will have a regular episode, but there will be no in the News episode Thanksgiving week. All right. With that thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening I’m Stacey Simms I will see you back here for in the news this week until then be kind to yourself Diabetes.

Benny  40:10

Connections is a production of Stacey Simms media All rights reserved. All wrongs avenged

Jul 20, 2021

Jack Tierney has lived with type 1 for more than 60 years. Not surprising, he was first misdiagnosed with type 2 and lived with that diagnosis for almost two years. He shares the story of finally getting the right diagnosis, living well with T1D before home blood sugar meters or fast acting insulins and why he just last year switched to a pump.

Stacey talks to Jack and his son Jamie. You can watch the video that brought them to our attention here.

In Tell Me Something Good – boy it was great to get back out to an actual in person conference. Shout out to not just FFL but to my local Charlotte community as well.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Previous episodes with people who've lived with type 1 for more than 50 years:

Marty Drilling

Jeanne Martin

Richard Vaughn

Judith Ball

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Click here for iPhone      Click here for Android

Episode Transcription below: 

 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

This is Diabetes Connections with Stacey Simms.

This week Jack Tierney is 81 years old and was diagnosed with diabetes more than 60 years ago. He had classic symptoms but remembers being shocked to hear the news.

 

Jack Tierney  0:38

And he told me I was a diabetic and I said to him what's that I had never heard the word or knew nothing about it. And he told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two because this was January of 1960

 

Stacey Simms  1:00

Jack was mis diagnosed with Type two for almost two years. He shares the story of finally getting the right diagnosis living well with T1Dbefore home blood sugar meters or fast acting insolence and why he just last year, switch to a pump

in Tell me something good boy, it was great to get back out to an actual in person diabetes conference, shout out not just to friends for life, but to my local Charlotte community as well. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. Okay, so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed 14 and a half years ago, just before he turned to my husband lives with type two diabetes. I have diabetes, but I have a background in broadcasting. And that is how you get the podcast.

I got an email a couple of weeks ago from Jack Tierney, who you'll hear from today. And he said check out the 12 minute YouTube video that my son and La filmmaker has created for me, it's called an 81 year olds 62 year journey with type 1 diabetes. Well, that caught my attention. I've talked to quite a few people over the years who have lived a very long time with type one, it really is incredible to think about how they made it work without the things that we consider now like the very very basics right home blood sugar meters, and a one c test fast acting insulins, Jack and his son Jamie have a great story. And I will link up that video that started all of this in the show notes you can always go to Diabetes connections.com.

If you're listening on a podcast player, you know like apple or Spotify or Pandora, sometimes the show notes are a little wonky. And the links don't work, just head over to the episode homepage. And it also has a transcription.

If you follow me on social, you know that I went to the friends for life conference recently the first in person conference for me since March of 2020. I'm going to talk about that after the interview. But I wanted to say a quick Welcome to anybody new who is listening who found me there who I met at that conference, there were so many new people, it was great to be able to say hi and have some hugs and meet your kids. So I'll talk about that a little bit. And I'll get to Jack's story in just a moment.

But first Diabetes Connections is brought to you by Dario Health. And, you know, we first noticed Dario a couple of years ago at a conference and very thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections.

Jack and Jamie, thank you so much for joining me. I am so interested to hear this story. Thanks for making time for me today. Oh, you're welcome. We will hear Jack story and I can't wait to hear you in your own words. But Jimmy, let me just start with you. What made you create that video,

 

Jamie Tierney  4:19

my dad said he was working on some scripts about his thoughts on diabetes and living with it for over 60 years. He wrote a number of different stories about it and wanted to record that on camera. And so we started doing that and we have all seven or eight sorry, eight tapes, I believe, of doing that. But what I was most interested in is his personal story, his life story because once we got started there was there's a lot of things that I didn't know about his story and about about diabetes in general. And so that's what got me interested and then I wanted to follow up with with his doctor and with his with his brother to get multiple sides and also my mom I'm here to get her side of it. It's one of those things that started off as one thing and changed a little bit as we went.

 

Stacey Simms  5:06

All right. So Jack, you have lived 62 years with type one. Can you talk about your diagnosis? Because not too surprisingly, you weren't diagnosed correctly right away,

 

Jack Tierney  5:16

right? Yeah. In the first tape that I did with Jamie, I did talk about what happened with me, I actually came down with type one in 1959. At the time, my mother, who was only 43, had a brain tumor, and I was under a lot of stress, and I was attending college. In fact, when I was home with her after she had to have had a tumor removed, I did get the flu, like so many type ones, it just exacerbated or caused type 1 diabetes, because I weighed 100, I'm six foot four at the time, a weighed 150 pounds, I was down to 125 and peeing incessantly, like everyone who gets type one does. And so I returned to college. What happened was, I was just deteriorating so fast. I was in a small town in Indiana attending college. So I went to the local general practitioner, and he did some tests and told me my blood sugar was over 500 and then needed to be 80 to 120. And he told me, I was a diabetic. And I said to him, what's that I had never heard the word or knew nothing about it. He told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two, because this was January of 1960. And he was a general practitioner in a very small town. But what he did do was consult with the dietician at the college I was attending, and he treated me I now know pretty much like a type two diabetic because he put me on 1000 calorie diet, your I am weighing 125 and surviving on any did give me a pill, I believe it was called diag and Ace, I really survived that way for about 18 months, just living on 1000 calorie diet and and I was in a really rigorous academic program too. But then as my brother indicates on the video, I came home and he was really worried about me. And luckily I had transferred to the University of Dayton and I was, I got in touch with a wonderful Doctor Who put me on insulin shots. And that made all the difference in the world. You know, I did get back to weighing about 150 in about six months, and you know, took the taking shots. In fact, what I say on the video, when I added it all up, I've given myself probably 42,000 shots over the years, by the way, preparing to do the tapes, Jamie because whenever Jamie does film project, he does extensive background for it. And he gave me a book titled breakthrough about the discovery of insulin by Dr. Frederick Banting. And in fact, when I, I'm going to start to cry, because I read that book in two days. Because it just reminded me of how many kids died before Dr. BAMMY who's one of the greatest human beings that ever lived, discovered him. And it just, you know, I just brought back so much to me reading that book. But the man was a absolute saint for all that he did. I'm sorry for crying. But every time I think of that, man, I just think all of us were type ones are eternally grateful to him back, he's got to have one of the highest places and heaven.

 

Stacey Simms  9:10

It is incredible, you know, as we're marking 100 years of the discovery of insulin to think that someone such as yourself was diagnosed at a time really not that long after, at a time when many doctors and they still mess this up. But you didn't know the differences between the types. I'm curious, you know, I've heard other people talk about being diagnosed in the 40s and 50s. By medical professionals who kind of, you know, gave them really dire diagnosis or dire outcomes or would say, you know, you're really not gonna live that long. Were you I hear the emotion in your voice. Were you told things like that back then? No,

 

Jack Tierney  9:47

you know, that's, that's very interesting, because I remember Okay, for example, one of the doctors that I know just casually here in San Diego is Dr. Steve Adelman. And he too, is a type one diabetic. And I remember in paper he had written, he mentioned the fact that he was told that that he had he would live no more than 15 years. And he was diagnosed as a young adolescent. So I know that many people who were afflicted with type one word told, for example, one of my doctors is put me in touch with a two or three other type one diabetics here in San Diego who've had it for 60 years. And one of the women that I talked to she's now 70 and she was diagnosed at age 13. And again, the doctors told her that she would live no more than 15 years.

 

Stacey Simms  10:50

How did you then go forward? I mean, it sounds like you kind of alluded to it, you know, did the shots it wasn't that difficult, you know, again, the weight back but this was at a time before blood sugar meters. This was at a time where I assume if you were checking it wasn't very accurate. What were you doing?

 

Right back to Jack answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen . And our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvoke glucagon.com slash risk.

Now back to Jack answering my question about how he stayed healthy.

 

Jack Tierney  12:06

Well, I'll tell you one of the tapes that I did with Jamie was on exercise, I quickly realized how important exercise was I just felt intuitively that I would utilize insulin more effectively via exercise. And so as I mentioned on the tape, one day when I was 23 years old, I played 50 holes of golf carrying my own bag. And I used to routinely play basketball because I'm six foot four, three to four hours, sometimes even five or six at a time if I had the opportunity away from my academic studies. So I just found that exercise was so important. And you know, I've been as somewhat of an exercise buff all my life. In fact, one reason why I contacted Yahoo and diabetics the connections because on a news release here in San Diego, I saw where Eric Tozer was running eight different marathons on every continent in the US over a short period of time. Yeah. And he's a type one diabetic. So, in fact, on one of the tapes, I say, whenever I get when two people like Eric, I really follow their story, because it's motivational to me to maintain the exercise level that I like to

 

Stacey Simms  13:37

let me jump over to Jamie for a minute, as you're hearing your dad talk about, you know, playing 50 holes, and golf and basketball. Growing up. Was he super active? Was this a family thing? Did he make you all get involved? Or was this his thing?

 

Jamie Tierney  13:50

Oh, no, no, we I've been playing golf and my dad, before I can remember, I was about two years old. And, you know, I was thinking because the US Open was fishing yesterday. And he used to wake up at three in the morning and drive down there and get us a place in line to go play and then then come home and wake me up and take me back there. And then we play golf and maybe come back and do yard work stuff like that. So growing up, I never thought it was any different than anybody else's dad probably more probably quite a bit more active than most other dads I knew around.

 

Stacey Simms  14:25

Was diabetes kind of in the background, then do you remember as a kid, or you know, as a young adult at all? I'm trying to envision what it would be like because now you know with insulin pumps, we see gems, we see it more. But I'm curious, Jamie, from your perspective, what it was like to grow up with a dad with the type plan?

 

Jamie Tierney  14:42

Well, I don't always see him do the shots. And you know, I don't remember ever asking him what those were about that I just remember. I was near what it was that he had to take medicine he had to do it every single day and had to do with a needle which isn't fun for anybody. I remember a few times, you know when when we would We are playing golf specifically with hot that he bring like a candy bar with him in case he would start feeling a little woozy he would, you know, he would, he would eat something to kind of revive themselves from there was a couple times I remember when it got a little bit scarier than that where he needed, you know, he needed some assistance needed to get back to the clubhouse quickly to get back to normal. So I was always aware of that. But again, you know, I didn't really know that much about the disease itself and how it works. Other than if you've ever looked a little bit off, it needs to get some, some carbohydrates and and quickly,

 

Stacey Simms  15:36

Jack, I would imagine and I'm just thinking from my own experience, as a parent and as a daughter are our parents generally don't want us taking care of them. And we don't want our kids taking care of us when we become parents. But type 1 diabetes is kind of always there. Were you consciously trying to think, okay, I don't want Jamie to have this responsibility. I've got this, did that kind of stuff go through your mind?

 

Jack Tierney  15:58

No, you know, I just felt you know, it's an affliction. Everybody has ailments and afflictions. And, you know, once I realize how valuable and importance for my health, taking shots where it just became second nature to me, and I just felt so much better. But I just told my wife last night, since I've been on the T slim X to in last eight months, I've never felt better in my life, and I'm 81 years old. So I just am seeing the value of the pump, you know, and like Dr. McCallum says on the tape, he was a little surprised that I would take to it but you know, I always respect him so much. He just told me that this T slim is really something and I'm just so thankful I took the leap eight months ago and did it because I feel tremendous. Having done I do feel better now that I'm on the pump than I ever did just taking shots.

 

Stacey Simms  17:11

Now, what led you to do this? It was was it a conversation with your endocrinologist?

 

Jack Tierney  17:16

Yes. And and just also, he told me that this pump was exceptional in his point of view. In fact, Stacy, I'll say this to you, I just and so long story but I did talk with Dr. Aaron Kowalski today the president of jdrf in New York, and he told me he's using the T slim the Tandem t slim max to also so that made me feel really good. That maybe this is definitely it just reinforced by decision as being a very good one. Well hearing about this from Dr. Kowalski. Well,

 

Stacey Simms  17:56

I know Dr. Kowalski, but we chose it to and I gotta tell you, I absolutely love it for my son. It's just the software. It's great. So you were already then using a Dexcom CGM. Because if you're listening and not familiar, the Tandem system works with the Dexcom. Right. Are you using that together? And had you been using a CGM for a while?

 

Jack Tierney  18:16

Yes, in fact, that's a funny story. You're gonna love this story. What happened was about three years ago, I went to see Dr. McCallum and I wanted to get on a continuous glucose monitor. Because, you know, I'd seen it advertised and it just sounded like the cat's meow. So I'm waiting to see him. And there's a young man waiting to see another endocrinologist. And he says, Dr. Tierney, and I said what and what it was, it was a gentleman, a young man that whose first name is Brandon. And I saw Brandon when he was nine years old to help him get ready for a test to get into a highly academic private school here in San Diego. And he at the time, he told me he was a type one diabetic. And so what happened was he was using the Libre and went over all of the advantages to the Libre before I saw Dr. McCallum, so I walked into Dr. McCallum's office, and I said, Well, Dr. McCallum I think I've made a decision on the continuous glucose monitor that I should be using because I one of my former students told me the benefits up Wow, so I went on the Libre. But then, in fact, at the time that I went on the Libre, the Dexcom, six wasn't available, right. And so it just sounded like the best one for me at the time. But then, of course, eight months ago, when I made the decision to go on the T slim. They told me it was worked in concert with the Dexcom six and that's why of course I switch to that saying it's great to

 

Stacey Simms  19:58

Yeah, it's it's Wonderful to have these choices. You know, I was gonna ask you, right, I was gonna kind of ask you to take us through the process of going from, you know, no home blood sugar meter to kind of you know what it was like in the 80s. And then, you know, the different insolence, but you like rocketed ahead, and now you're on a hybrid closed loop system. So you've right, it's

 

Jack Tierney  20:20

so sad, you know, there was nothing available. Thinking back, I did a lot of research before I did the eight tapes that Jamie debts. And one of the things that I learned and I had read a little bit about that, because I read a lot about that diabetic compilations and controls study that was done in 1980s and early 1990s, with type ones. And you know, in fact, they abbreviated the study early because it showed that tight control of type one of your blood sugar is imperative. In fact, I think I in my research for those tapes, that study I think, yeah, it was called the DCC, diabetic comm closed stations control trials dcct. And that thing, that thing, I was concluded early, because it showed how important it was. And I think as a result of that the a one C was developed, and also kilmallock. Because before that I was using NPH, insulin from 1961 until the latter part of the 1990s when human log became available, and also, I got my first day one see back in the 1990s. Well, because that wasn't available. Until you know after that monumental study, the dcct. That's when the a one c came about, I believe. And also more synthetic insulins like human lock, right. And that helped me a lot getting on unilock it really good. But I didn't get on that till about I think 1998 1999 thanks to Dr. McCallum

 

Stacey Simms  22:13

What does he say to you? It's must be really interesting for him to talk to someone. I mean, my guess is that you educate him about many, many things as well. I'm curious. It just sounds like he's really open minded and really a team player with you to to encourage someone who has you know, not but on an insulin pump has lived with type one for more than 60 years. And then to make that change. Do you feel like maybe you're educating him as well? Oh, yeah, I

 

Jack Tierney  22:41

think it's mutual. Definitely. In fact, what happened was, Jamie said to me in mid March, he said, Dad, I'd like to interview Dr. McCallum. We've done the eight tapes. But like Jamie just said previously, I'd like to interview Dr. McCallum. So I called me and Jamie had to come down here on another job to San Diego from LA. And he wanted to do it on a Friday afternoon. Well, I called Dr. McCallum and he said, You know, I can't do as it's just chaotic once you guys come in Saturday morning, I couldn't believe he invited us in Saturday morning. We were the only one over there. And so I said to him, Well, can I sit in and listen, because Jamie interviewed him for an hour and a half. And I resist taking in his responses to all the questions, because you know, a lot of what he presented I had not heard before. And so it was just a very good education on my part to hear his responses to Jamie's questions. And also all along. He's been very respectful of my what I've learned. I'll give you one good example. And this is good to know, for every type one diabetic, sure, you got to pay attention to your endocrinologist, but also, you've got to pay attention to your experience. I remember when I first got on insulin back in the early 1960s that I was obsessive compulsive about making sure it was refrigerated. I mean, I was Oh, CD on it. I really was well, I'm reading a Life magazine. And this had to be in like 1963 about a gentleman by the name of Franklin, Billy Talbert. And Billy Calvert was one of the greatest tennis players ever. He was diagnosed in 1929. He lived to be 80 years old. In fact, that's one reason why I made the tapes. I said, Well, Billy made it to 80. Maybe my time is coming up. So I better do something that I've been contemplating doing for a while. But in that article back in the 60s, this is what Billy said, I'm playing tennis all over the world. I can't keep my insulin refrigerated all the time. And so I wasn't as I can, you know, you kind of learn by experience what you can do in the like, I mean, sure you take the advice of all of your doctors. But after that I wasn't obsessive compulsive about keeping my insulin refrigerated when I learned what Billy tailrace experience was. And that's what I found with Dr. McCallum he really paid attention to my experiences with this chronic illness. That's great.

 

Stacey Simms  25:28

Jamie, let me ask you, you know, you are a filmmaker, what do you hope happens with this video, I could ask you why you made it. I kind of have, you know, there's so many reasons why you would do something like this. But I'm curious to know, why did you do it?

 

Jamie Tierney  25:41

Well, I mean, my dad asked me to maybe not make exactly a film like this. But I just think it's an interesting story. I mean, when I when I got into it, I mean, the thing that kind of hit me the first thing that he survived for almost two years without insulin, yeah, I don't know how that happened, to be honest. And, and I tried to do some research. And I did ask the doctor, how many people have ever made it for that long, I don't think there's too many have forgot about it. He's my dad, but just from a human interest perspective, that someone could survive like that on a small amount of calories and no insulin with basically the pancreas not producing any more insulin at all. So that I feel like it's, it's pretty interesting, just the triumph of the human spirit, I think, and then having lived for, you know, 16 more years after that episode. And but then also, what's interesting to me is just how he's gone through every single phase of treatment. I know the first two treatments were began in the 20s. But it sounds to me like in the 60s, when he first started, it was basically a similar treatment to the 20. So it's pretty much gone through every single medical advance. And I just wonder, again, how many people are out there who are 81, who are getting started on something technologically advanced, like this pump and take into it? I feel like there's an interesting story there, too. I don't know how many people are are in his in his boat with that, too. Yeah. Can I piggyback a little bit? I'm going to tell you something. I haven't told too many people. As we said earlier, Jamie did fill eight scripts. Well, everything led to script number eight. And in script number eight, what happened was from 1992 to 1995, I was asked to be superintendent of the schools in a school district, that was the worst in the state out of 1000. And when that three year period finished, I believe, and maybe I don't think I'm off on this. It became the best school district in the state. And Jamie was getting his master's degree at USC, and screenwriting. And he said to me, dad, someday you have to tell this story. And I thought that was commendable on his part. In fact, he bought me a recorder. And so for a whole year, whenever I was driving, in my new assignment anywhere, which involved a lot of teacher training, I would record my thoughts. And when I finished, I recorded 55 hours of material. And I vowed to write three books. And I have written those three books on my experience there. And that is my ultimate reason for doing these tapes with Jamie helping me because I want to get a little bit of personal notoriety out there in hopes that a reputable publisher will publish my three books, because I think I've got a story. In fact, I told my wife and I just finished watching Downton Abbey because many of our friends thought it was so good. Well, I said to myself, after I watched Downton Abbey, my three books are an American Downton happy because it's a story that in fact, when I was contemplating doing when I started writing the three books of fellow Superintendent friend of mine said, Jack Tierney, he said, You beat me to it. When I retired, I was going to write a Michener light novel titled School District, because what really goes on behind the scenes in a school district has never been taught and what goes on in a border town. The story of what really goes on a border town has not really been told yet. And that is my ultimate person, poor person. I want these books, hopefully a reputable publisher rather than my working on self publishing, and maybe even three movies be made because I think it has the potential for that. And every month cent made will go to be find a cure for type 1 diabetes.

 

Stacey Simms  29:57

That's great. Well as we start to wrap this up, I'm curious to ask we on this podcast hear from a lot of adults who have been diagnosed with type one, I mean, sure, there's a lot of children as well, this audience is really half and half. And I'm curious, what would you say? What would you say to somebody you know, who was 60? Or 50? You know, who's not six years old? What would you talk about or tell somebody who's diagnosed as an adult?

 

Jack Tierney  30:21

Well, I probably would say the same thing. That I would say to someone who's diagnosed that like those four young men that I saw, for SAT prep, one of them was diagnosed at age three, the other two were re diagnosed at age seven. And then Brandon, who I mentioned earlier, nine, they have the ability and the courage to take this head on, you know, it is a chronic ailment, but with taking the advice of your endocrinologist and working at it, it is indeed manageable. I'll tell you what one one of the four young men told me when I met him for the first time, we finished the session on SAT prep. And I knew in advance that he was a type one diabetic, he actually had been diagnosed when he was seven. And he was now 16. And I said to him, I said, Well, probably in your lifetime, there will be a cure. And you know what he said to me? You're not going to believe what he said, Stacey, what did he say? He said, I wouldn't take it, huh? Because he had learned how to do it. And he had met this challenge. In fact, when he said that to me, I said, Jamie knows I've said this a lot. I think a lot of young people today, we don't have fixed rites of passage and societies too much anymore, where you did something notable. And the whole community recognized you as a aspiring adult. So young people are picking their own ways to prove to themselves the world and their families that they can stand on their own two feet. So I think that's why that young man made because he had his rite of passage thrust upon him. And he felt that he had successively done it. And so he didn't want to take him away necessarily. Yeah. Anyhow, that's my degree in philosophy. Coming to the fore here on why he responded the way he did, I've heard my dad tell versions of the story, my whole life, but it's, it's nice to have something that you can condense into 11 minutes and hopefully that people can get a sense of him, but also just how you can thrive and have a great life amidst the challenge of this disease. And as he says that, you know, hopefully, this this treatment is, is great, but hopefully there is a there is a cure someday and stories like harrowing stories of what my dad went through it in something. The future,

 

Stacey Simms  33:04

Jackie, so playing golf.

 

Jack Tierney  33:05

Oh, yeah. All right. Oh, yeah. I don't play that well, but I love to play. And what's best of all, I love playing with Jamie and his sister. In fact, every time we play, they're a lot better than I am. And they always give me a good tip. And that helps me to play a tad bit better. One of my neatest experiences as a father. In fact, the three of us, three of us always played on Father's Day. We don't now because Emily's in Cape Cod as being a doctor and Jamie's MLA. But whenever we did, when they were in elementary school in high school, it was one of my fondest memories on Father's Day.

 

Stacey Simms  33:51

Well, thank you so much for sharing your story. Jamie and Jack, I really I can't thank you both.

 

Jack Tierney  33:57

Give your best to your son, your 16 year old now. Just neat. He's doing so well. And what a champion he is.

 

Stacey Simms  34:06

Thank you very much. That means so much. And I appreciate you both coming on to share your story. And you know, we can learn so much from it. So thanks, guys. I really appreciate it.

 

You're listening to Diabetes Connections with Stacey Simms. More information about Jack and Jamie at Diabetes connections.com including the video with lots and lots of photos, Family Photos, if you'd like to take a look at that. I really appreciate them coming on. So much fun to hear that story and really reflect back and I love that you started using an insulin pump. Just last year, I have a friend who was diagnosed with type one in her late 60s and immediately went out and got the technology she wanted. A CGM right away hasn't started using an insulin pump yet she may never and that's okay but just knowing that the option is there. I think it doesn't matter what age, right? It's all about finding what works for you.

And if you're interested in learning more about people who have lived a long time with type one, like I said, at the very beginning of the show, I've talked to several people who've lived, you know, 60, or even 75 years with type one, Richard Vaughn comes to mind. But there are a couple of other people who've been on the show before. And I'll try to link that up in the show notes as well and kind of make a little list if you'd like to go back if you're new to the show, and want to hear more from these incredible pioneers in our community, a little bit more about in person connections and things like that.

But first Diabetes Connections is brought to you by Dexcom. And you know, a couple of weeks ago, we were watching TV, and I got a Dexcom alert, Benny was upstairs in his room, we were downstairs. And for some reason, it kind of took my brain back to the days when we basically had blood sugar checks on a timer, we would check during the finger stick the same times every day at home and at school, you know, whatever extra we needed to as well. But it's amazing to think about how much our diabetes management has changed with share and follow. I didn't have to stop the show to get up and check on him. I knew what was going on, I could decide whether I wanted to text him or you know, go upstairs and help him out. Using share and follow apps have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me, he loves that part too. And that's what's so great about the Dexcom system, I think for the caregiver, or the spouse or the friend, you can help the person with diabetes manage in the way that works for you know, their individual situation. Internet connectivity is required to access Dexcom follow separate follow app required, learn more, go to Diabetes connections.com and click on the Dexcom logo.

So tell me something good is usually where I share your good news. And hey, send me your stuff, Stacey at Diabetes, Connections calm or I'll post in the Facebook group Diabetes Connections va group, I'd love to hear the good things that are going on for you, you know, this summer, and as we head into August, let me know what's going on. But for me, the Tell me something good this month was friends for life. I didn't even realize how much I needed that until I was there. If you're not familiar, and I know many of you are joining me because you met me at that conference. But if you're not familiar, it is the largest diabetes conference in the country. This year, they made a joke. It's the largest one on the planet because it's like one of the only ones happening on earth this year. Usually it's almost 3000 people meeting up in Walt Disney World at the convention center there. It's gosh, it's so hot in Orlando in July, but it's always so worth it this year. I think it was about a third I want to say maybe 1000 people were there was a smaller event. But it was still fantastic speakers education a chance to meet the industry people touch insulin pumps, talk to vendors, things like that. There's a lot of stuff happening. And for the kids, you know, it's a chance to see and and adults too, it's a chance to see lots of other people wearing the technology that many feel self conscious about. And usually by the end of the week, and I met a family like this a shy seven year old who didn't want to meet anybody and was almost hiding in her hotel room was jumping in the pool by the end of the conference showing off her Dexcom and her insulin pump. So it's about empowering people with diabetes. It's about educating families. It's about support.

As I mentioned, last time, we had an episode I was gonna say last week, but it was two weeks ago. I mentioned a new presentation that I was doing reframe your diabetes parent brain. I thought that went really well. I was really thrilled with the crowd. really terrific people. And they did the presentation. I was always afraid of people gonna play along and give me their examples that everybody was great. So if you are interested, I'll do this on zoom. I'll come to your group. Welcome to your parent meetup. It doesn't have to be anything formal. It's really just about taking the terrible things we say to ourselves. I'm failing my child. I'm the worst Mom, I'm not doing as well as everybody else. How could I possibly have forgotten the blah blah blah. And reframing those thoughts to help us not only feel better, this isn't like a woowoo thing although there's nothing wrong with with changing the way you feel. But this is really actionable stuff about seeing how you are actually living so well with diabetes and you're doing a great job and your child is thriving right under your nose when sometimes you think everything is going wrong. So that was really fun. Sometimes it friends for life or new at the at a conference a couple weeks ago. Sometimes there's big announcements about new technology or you know, people will do presentations and show the new stuff. There really isn't anything like that this year. There's a lot of delays because of COVID. As you know, if you listen you know we are waiting for Omnipod five with Horizon, we are waiting for tandems boltless by phone, we are waiting for Dexcom to be submitted to submit g seven to the FDA. So there's a lot of things we're waiting on. But the community is always there. And I really really needed to see those other moms to hang out with everybody and just to breathe that air again. So thank you so much for everybody who came who said Hi, and who's listening. Now.

We also had a really, really great meetup in the Charlotte area and I only share this because you can do this where you live, even if you don't know anybody with diabetes, reach out to your local jdrf or post in some of these Facebook groups post in the Diabetes Connections group you never know maybe there's somebody who's local to you and start talking about let's get together. We had a fantastic meetup. It was parents and kids, and it was adults with type one. Our chapter has really gotten on the ball with adults, they have a whole volunteer outreach now for them. And you know, it's so cool to see people of all ages living well with diabetes, and we all help each other right? So I share that not just to say, isn't my chapter great, which it is shout out to my fabulous friend and Sutton, who makes that chapter home. But also just to spur you on to think about meetups in your own area. They're hard to organize, I do them too. And it's sometimes 20 people come sometimes two people come, but it is really worth it to keep putting it out there and keep trying to find parents, kids, adults in your area, we need our diabetes community, you only see your doctor for teeny weeny amounts of time, every couple of months. Diabetes is 24 seven. So reach out, find people post in the Diabetes Connections Facebook group, if you have questions, we can help you I do a whole presentation on making connections. So I can definitely give you tips and tricks, especially as we get closer to school starting about how to find other families in your area.

All right before I let you go, if you have listened for this long as you are listening to this episode, if you listen as it goes live, Benny knock on wood should be coming home from Israel today. As I am taping, it's still a couple of days away. But it will have been a month and I should be picking him up at the airport as this episode is airing. I am hoping that after he sleeps and showers, or sleeps for a couple of days, that he will do a debriefing on the show and talk to me about what it was like not just going to Israel with camp for a month. But what it was like doing all the diabetes stuff completely on his own. At this point. I don't really know a lot. I've seen his numbers. And I think I know what's going on. But I really want to hear it from him. So couple of days left, I can do it. Keep breathing. Oh my gosh, this has been so stressful. And I will share more with you all warts and all. I'll share the honest story, but not until he's back and home safe. All right.

Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening in the news every Wednesday live on Facebook at 430. And then we turn that around into a Friday podcast episode. Do not miss out in the news is like six or seven minutes. It's real quick. I'm trying to get it to five minutes, but I can't get it to five minutes. It's only six or seven minutes long. There's just so much good stuff happening and news to bring you from the diabetes community. So join me every Wednesday live for that or listen for the episode here. I will see you back here in just a couple of days. Until then be kind to yourself.

 

Benny  42:51

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Feb 4, 2021

Ernie Prado was diagnosed with type 1 as a teenager and is now a project engineer at NASA. He has a terrific story and it's not exactly what you'd expect. Ernie wasn't a diabetes superstar who lived a perfect diabetes life all along. We're so grateful he was generous enough to share the real story!

This is our first in a new series of "Classic Episodes." In addition to our regular Tuesday episodes, we'll bring you an additional episode like this every Thursday. What’s a classic episode? It’s an interview that aired a long time ago but isn't dated in a way that takes away from the experience. We’ve been around for a while, so there’s a good chance you missed some of these back in 2015 or 2016.

Stacey first spoke to Ernie Prado in 2016 and he's now the Project Engineer for something called the Super Guppy. He says it transports outsize spaceflight cargo in support of Artemis which will take the first woman and next man to the moon. Check it out here

Check out Stacey's book: The World's Worst Diabetes Mom!

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Episode Transcription:

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of digital stuff with quite a few laughs along the way.

 

Announcer  0:15

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:21

Welcome to a Classic episode of Diabetes Connections, something a little new this year. But as always, we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I am your host, Stacey Simms, and I am really glad that you are here.

So I said something new starting this week in 2021. In addition to our regular Tuesday episodes, I'm going to be bringing you an additional episode like this on Thursdays. So what is a classic episode, it is an interview that has already aired a long time ago, but it is still what we would call evergreen. It's not dated in a way that takes away from listening to it. Now we have a lot of episodes. We've been around for a while. So there is a good chance that you missed some of these interviews back in 2015, or 2016. And these are really interesting, fun people and I wanted to bring their stories to a wider audience.

This week, you are going to hear the story of a NASA engineer, a rocket scientist who lives with type one. Ernie Prado has a really great story. But it's not exactly what you would expect. He wasn't a diabetes superstar who lived a perfect diabetes life all along. And I'm really grateful that he was generous enough to share the real story you will hear from Ernie in just a moment.

But first, these classic episodes are brought to you by a brand new podcast. And this is pretty cool to have a sponsor who is also a podcast. So let me tell you all about this. This is inside the breakthrough. A new history of science podcast full of Did you know stuff like did you know Henry Ford and Thomas Edison were really good buddies. They even work together on an electric car, and it still failed. Episode One dives into stories including Archimedes yelling Eureka while naked in the streets and Alexander Fleming's discovery of penicillin by accident inside the breakthrough was created by SciMar SciMar is a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes.

This show is historical wisdom mixed with modern insight with quite a few laughs along the way. I've listened to it. It's a great show really high production value, great host and great information search for inside the breakthrough anywhere you listen to podcasts and at Diabetes connections.com.

It has been almost five years since I first spoke to Ernie. What is he doing now? He is the project engineer for something called the super Guppy. It sounds funny, but this thing is really amazing. I'll put a photo and a story behind it in the Diabetes Connections Facebook group, Ernie tells me it transports outsize spaceflight cargo in support of Artemis, which will take the first woman and next man to the moon. So pretty important job really interesting stuff. And I think as you listen to this interview, you'll see that Ernie is really where he wants to be. Please remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. So here is my interview with NASA's Ernie Prado from June of 2016.

Ernie, thank you so much for making some time to talk to me today. I really appreciate it. Yeah, before we get to the rocket science and NASA and everything that's going on now, take me back to the beginning you were diagnosed with Type One Diabetes at the age of 15. Did you know at that point, that you wanted to have some kind of career with the space program?

 

Ernie Prado  3:55

Oh, yeah. So my life goal, I guess when I was younger, I was always drawn to space and airplanes. And my mom said, I cry if I didn't watch Star Trek when I was like four. So I wanted to be an astronaut. And before that I wanted to be a fighter pilot and fly f 18. So I was always drawn towards this and my goal was to end up in space.

 

Stacey Simms  4:18

Well, you were diagnosed, as I said, age 15. The diagnosis was about, let's say 15 years ago, you're you're 29 you're 30

 

Ernie Prado  4:26

Yeah, it's half half my life now. Yeah. Um,

 

Stacey Simms  4:31

what did the doctor tell you at that point was that you have type one. And you're never going to do these things that you always wanted to do? Or was it a little bit more kind?

 

Ernie Prado  4:41

So actually, the past few months, I've been trying to figure out the exact date I was diagnosed just because, you know, I've been reading about folks and a lot of folks have a die of diversity. And I kind of was trying to figure out mine. And I've been thinking about that actually contacted the hospital. And unfortunately, I don't have the records. More, but I don't remember the doctor saying, you know, you're not gonna be able to do a lot of this. I feel like I've encountered more that, you know, outside of maybe the medical community. So I've been lucky enough to take part in a medical study from with FA and utmb about trying to get folks of chronic conditions like diabetes into space through companies like Virgin Galactic, and XCOR. And so I got to go into centrifuge. And that's pretty cool thing for diabetics to do. I did encounter some resistance when I was trying to become a flight controller. And so at the time, I had other projects coming up, so I kind of, you know, let that go to the wayside. But I haven't stopped me from doing most of the things I wanted to do. Maybe a few, but I try to find ways around it and still do them anyway.

 

Stacey Simms  5:52

Yeah, and I want to talk more about that. I'm just trying to kind of figure out what this was like for teenage you. Because that's a tough time anyway, and to be diagnosed at age 15. When you're hopefully, you know, you're busy with a lot of other things. Do you remember what it was like at that point in your life to make that kind of change?

 

Ernie Prado  6:10

Yeah, it was really hard, actually. So I came to accept that a lot more about the time I was 18. I was about three years after those first three years were a little bit difficult. Because, unfortunately, and you know, I love my mom to death, but she kind of told me not to talk about my diabetes, and to not let people know I had it. And over the years, I've realized that was a little bit, not probably not the best method to approach it. And so I dealt with it on my own a lot or just with support at home and from my family. You know,

 

Stacey Simms  6:44

I'm sorry to interrupt. I've heard that from other people that at, it seems like a better idea to try to avoid discrimination, ignorance by kind of just keeping it to yourself, is that maybe what your mother was trying to do?

 

Ernie Prado  6:59

I think so. And, you know, I think she did with the best intentions. But it was, it was really difficult to not talk about something that I considered So in general, about myself, because it was kind of thrust on me and said, hey, you're earning now you're diabetic, and, you know, it was through no fault of my own, it just happened. So it would be the same thing, as you know, having like a really strong interest in you know, like space, I wouldn't be able to hide that. I didn't want to hide the fact that I was out back. When I got to college, I started telling everybody and you know, I've continued that. But it was difficult, you know, to try to explain why I wasn't eating certain things around my friends, or why couldn't go out sometimes, or why I had to stop playing football and wrestling and all that. So it was a, I'd say it was a pretty good difficult time in my teenage years.

 

Stacey Simms  7:49

And you had to stop playing sports was that because of I'm gonna just guess, because your mom was not comfortable? Or was it something that happened?

 

Ernie Prado  7:57

Yeah, partly that. And my first doctor, I think, you know, in the abundance of caution said, you know, you might want to take it off for a little bit and learn about your diabetes and how to manage it. And it might have been understood as he shouldn't be playing sports anymore. But depressing. Yeah.

 

Stacey Simms  8:18

Well, okay, so you get to college. You're you. You're telling everybody you have diabetes, what you study in college, were you now going ahead with the engineering with the career in space program?

 

Ernie Prado  8:31

Yeah, absolutely. So when I got to college, actually declared my major before getting except for as soon as I got accepted, I believe. And I chose to pursue a double major in aeronautical sciences and engineering, and then mechanical engineering. Because I figured, you know, if maybe right now, I can't fly, or do what I want. I'm going to get involved somehow at NASA. And luckily enough, it ended working out. And I kept my majors throughout. And I tried to add a minor and do some pre med stuff, but I ran out of time and money, so I didn't get that.

 

Stacey Simms  9:03

And were you able to go to work for NASA right away? Where'd you go to work? Um,

 

Ernie Prado  9:08

so yeah, I was very fortunate. I began working at NASA as a co op at the age of 20. So it was my sophomore year in college, and I've been here since. So it's been about eight and a half a while on this cluster nine years. I've been out here. And so full time for about a little over five years now, though, for the first few years, I went between school and working here at Johnson Space Center. And I think in total of my college time was about a year and a half out here. So I really got my degrees in about three and a half years. Although I was in Davis for five years.

 

Stacey Simms  9:39

What was it like? And maybe this moment happened when you were as you said, you were 20 and you went to work there but you're still in college, or maybe it happened after? What was it like when you walked into NASA and realized I am going to be here, at least in this capacity.

 

Ernie Prado  9:55

So I'm kind of smiling like I believe right now. Remember that first day I mean, I'd never been to Johnson Space Center before, you know, being hired here. I've been at Kennedy Space Center with my dad, that was my graduation gift from high school, he took me there and in his big truck, and we tried to see a launch of, I believe, is STS 114, which was returned to fly and Stephen Robinson was going to launch that mission, which he was an Aggie from UC Davis. And that's where I was going to school. Then hurricane Ernesto roll through, me and my dad are both named Ernesto, and it hit a lightning tower. So they delayed the launch, and I didn't get to see it. But then, you know, a few years down the road, showing up here and saying, Man, I'm walking the same like ground, the astronauts have walked in flight controllers, and all these people in history. It was this really cool sense of I can't believe it. And I still kind of get that pretty often. It's a really cool job.

 

Stacey Simms  10:55

It's so amazing when you get to do the things you've always wanted to do. That's a great story. I love hearing that. I was reading an article that the writer and author Moira McCarthy wrote about you more has been on the show a couple of times already. And she talked about I guess you told her, there was a point at which you realize that, you know, diabetes was something that you needed to kind of pay more attention to, during your time at NASA. Can you tell me a little bit about that?

 

Ernie Prado  11:29

Yeah, so I guess that happened. Because I was working at the NBL, which is the Neutral Buoyancy Laboratory. It's our big environment for it was a gigantic pool, 6.2 million gallons. And it's the environment where we train astronauts at a spacewalk. Typically, if you're a co-op, in that building, you as a guest, at the end of your rotation, you get to dive in this big pool, which has a mock up of the space station in it. So it's this amazing, cool, cool thing to do. And my A1C was at 13.9. so incredibly high. I wasn't taking care of myself, just because I was stressed at school and more focused on getting good grades and kind of in a, I knew I had to diabetes, and I couldn't get rid of it. But I guess, and even though I told people, I wasn't accepting it, so my mindset was, well, you know, if I don't think about it, I don't have to deal with it. And that was a very poor mindset to have. So once they told me, Well, you know, your sugar is not controlled, you're not gonna be able to dive in this pool. I was, it was kind of a wake up call. And I was going to Well, that's a real bummer, because I don't know if I'll ever get to be here again. Or if I have this opportunity again. And so unfortunately, I didn't get to dive in the pool. But I had a very cool boss, he said, Well, you're still scuba certified. And although the medical folks won't sign off on you to do this, you can still snorkel the pool. So that's exactly what I did. I had my snorkel and I got to go about six feet deep in a 40 foot deep pool, I would have loved to sit on the floor and have my UC Davis flag. But, you know, I still got to hover above the mockups of the Space Station. And actually, there was two astronauts in there when I dove, I think it was Lincoln and Patrick, from STS 130. And I got to see them practicing for their spacewalk that they would do. And then later on, when I was back at school, I got to see them through the spacewalk in space, and I was going, I got to be in that tank with them. So I got I still got to experience it, luckily. But that was the point where not taking care of myself almost hindered something really cool that I could have done.

 

Stacey Simms  13:29

Okay, so I have a dumb question for you. They learn to spacewalk or they practice spacewalk in in a pool.

 

Ernie Prado  13:35

Yeah, so it's interesting, you want to think that you learn how to do space walking in a pool. When you're in orbit, you're in microgravity. And you're basically falling at the same rate as gravity, so you kind of just float. And so what the pools can simulate is the weightlessness. What it doesn't simulate is the resistance to movement. So in space, there is no atmosphere. So you can move very easily with very low friction. In comparison to work in a tank, you know, full of water, you have a lot of friction, when you try to move, it's kind of like when you extend your arm and try to swim in the pool. It's very difficult to do. So you can't simulate that, but the weightlessness portion you can. And they do that by attaching weights or foam on to the spaces that are in the pool, and you become neutrally buoyant, hence the name of the laboratory. So you don't sink in, you don't float just kind of hover there in one space and water. And so you actually can't even swim. If you can translate along the mock up or along the space station mock up with the hand rails on like you would on orbit. But if you need to go from one location to another, and you don't have anything to grab onto divers have to come and move you.

 

Stacey Simms  14:40

Wow. That's amazing. What made you decide Do you remember when you were younger? You said earlier your mom said you got upset if you couldn't watch Star Trek at age four. Okay, first of all next generation or original Star Trek? Very important question,

 

Ernie Prado  14:55

I believe, I think next generation but I like them all. Now. And when they come on, I will watch them. So I'm a big fan. Anything space related? And I'm in love with.

 

Stacey Simms  15:07

It's funny but but what would you remember what got you really excited about it as a kid? Was there anything you can think back on and say that, you know, you just really wanted to go into space? We were fascinated by the planets. I'm always curious what, what sparks a passion in someone?

 

Ernie Prado  15:23

So I feel like that's the hardest question to ask. And it's typically one of the ones that is asked, because it is an interesting thing. But you know, and you always hear the folk folk say, I just got the space bug, and it's kind of like this thing that just happens. So I do remember loving planets, loading stars, loving spaceships, is kind of everything about that. I'm not sure exactly what did I just think I was fascinated. There's one moment that kind of stands out to me, that was pretty neat. And it was this. eight and a half by 11, kind of photo of the first few shuttle astronauts are john young and Bob Crippen, and they were in their orange pumpkin suits. And I just remember looking at that, you know, at the time, I drew on the back and wrote my name, and like pink highlighter, and going, Wow, these folks are really cool. They get to go into space. And it didn't really dawn on me just how cool their job was, for some reason that picture always stands out in my mind. And then, you know, at 21, about a year after I started working here, I actually got to meet john young and shake his hand. Oh, wow. And, you know, so he was the commander of the first shuttle flight. But he also flew in Gemini, and then Apollo and he walked on the moon. So I shook the hand of a Moonwalker. And then that kind of like, is what threw me back to that memory of that of that picture going, whoa, that's really cool.

And, you know, I think my dad probably has something to do with it, because he was in love with the shuttle program. And he told me about, you know, driving loads in his truck over to, I think, Edwards Air Force Base and Palmdale when they were building enterprise, which was tested shuttle for kind of clarity, and never flew into space. But it did the approach and landing test, and he has pictures of it, you know, back before the real shuttle ever flew. And then I remember asking him, did you ever think you'd have a kid that worked for NASA? And he said, No. Probably some of his interest rubbed off on me.

 

Stacey Simms  17:15

That's great. You mentioned earlier, a couple of things I wanted to go through. You mentioned that you were in a centrifuge. Yeah. Tell me about that. What was that was that for testing. And I mean, that's just that's one of my nightmares, to be honest with you. So tell me all about that.

 

Ernie Prado  17:30

So that was a really awesome experience that happened about three years ago, the commercial space tourism industry is starting to come up, it's still very young, but they need to do your research on how a more average person will fare in the environment of elevated g loads and weightlessness. And so they need to gather data right now, you know, most of the folks that go up into space are I consider them superhuman, these people can take all kinds of abuse, and they're in peak physical health. But that's not everybody that would be interested in going in space. So as they start to open up this market, folks have back problem and lung issues and diabetes and heart problems. They want to understand how they will react to the forces and weightlessness and the stresses that it puts on their body. So one of my friends sent me a link that was saying that, you know, recruiting folks with these kind of conditions, to see how they will fare and I was like, amen. So I went and applied. And before even getting selected, they said, these are the weekends that you would come Are you available, I went and bought my tickets, before I was even approved. And so I showed up to the doctor for my physical, and he goes, Okay, well, you're good to go. And I said, often he goes, what we can do on goal is, like, already bought tickets, and the doctor just looked at me incredulously and goes, what you didn't know, you'd be if you'd be approved? And I said, Well, I love Southwest, because you can still use those funds towards another flight. He goes, Okay, well, you get to go on that weekend.

So I flew out to Pennsylvania, and it was the NASCAR facility. And this is like, a really incredible facility where they train pilots, you know, how to survive these incredible maneuvers that they perform, and jet aircraft and, you know, folks that are hoping to go to space and just training for a variety of things that includes stresses on the body. So they stuck me in this centrifuge. And I had another participant there with me, who was a former F15 pilot, which is just the coolest thing ever. And they subjected us to the flight profile of the XCore link and the Virgin Galactic spaceship two, or one I believe at the time. And so I think I peaked at about seven and a half G's for about 15 seconds or so. But you went through the profiles and got to see how it would be the experience of spaceflight. And so they put you through the asset and the decent, not so much the weightlessness portion, but it's very interesting to see just how much it affects you. My sugar levels were good, but I was so tired because you have to flex your entire body to prevent from blacking out and there's specialized breathing techniques to keep kind of pressure in the lungs and just to maintain how Consciousness. So luckily, I had a very experienced person there with me who taught me, you know, this is how you how you hold your breath, or this is how you flex all your muscles at once. And I did, they seem to think that I did very well. And it was a really cool enjoyable experience, and a video of it and pictures and probably something that I'll never forget, I was just so neat.

 

Stacey Simms  20:19

Were they very interested in your blood sugar particularly did they measure that throughout?

 

Ernie Prado  20:24

So I measured it before and after, you know, a few times during the day. I didn't have my CGM at the time, I didn't have it available to me. But I wasn't worrying because the needle kind of hurt a bit. It was one of the older ones, just painful. So I kind of was avoiding it. So I did the finger pricks. And yeah, my sugar levels maintained pretty well, they said, you know, keep a little bit higher than normal. So that way you don't tank and so I think I was staying around like the 170s or so. But it didn't affect me at all. And I think I was playing around going that this was the first instance of an insulin pump going through that kind of G load. And it probably should have told because

 

Stacey Simms  21:00

that was my next question. Did you do you worry your pump during

 

Ernie Prado  21:03

this? Yeah. And I didn't capitalize on it.

 

Stacey Simms  21:07

What kind of pump? Do you Where did you were at the time.

 

Ernie Prado  21:10

So at the time, I was wearing my Medtronic, and I think it was the 720 paradigm. And it performed pretty well. I mean, I still have the same pump right now it's lying on my counter, because I’ve switched to a Tslim. But it's survived it just fine. And it performed perfectly after that. And apparently during. So that actually would probably would have provided some really cool data to that team. And I just didn't make the connection at the time, unfortunately.

 

Stacey Simms  21:39

Well, you had other things to think about. And it's interesting that they didn't ask I mean, that's, you know, that's just one of those things where they're, they're studying people with diabetes. You know, I would assume they looked at all of that, but the upshot was that you were just pretty much really worn out.

 

Ernie Prado  21:51

Yeah, I was, it was, I was surprised how tired it was. Because I think throughout the it was two days, and I think throughout each day, maybe 15 to 30 minutes of that day, we're you know, the elevated g loads. And I went home and or to my hotel, and I just asked all those exhausted because you don't realize it but you're working out every single muscle in your body for that short timeframe. And it actually takes a lot of energy others. And you know, Bobby, the guys that said that you eventually get used to it, you know, once you're fighting jet, and you were a GC to help put pressure on your body, and it helps do some of that work for you. But we didn't have any of that equipment.

 

Stacey Simms  22:31

You talked very early on in the interview about flying about I think you said flying F18s. Is that something that you would like to be doing? Or is that something that you have done?

 

Ernie Prado  22:40

I've never gotten to fly an F18. So that's a military jet that the Navy uses, you know, as one of their fleet. And so that's like a dream of mine still at this point. But you know, I mean, even any other military jet would be incredible.

 

Stacey Simms  22:58

Do you fly? I mean, I dumb question. Are you do you have a pilot's license? Do you fly at all?

 

Ernie Prado  23:03

I don't. I've gotten some stick time before on several. What are they called? The word is escaping

 

Stacey Simms  23:12

like a simulator.

 

Ernie Prado  23:14

And then I've flown simulators I've even flown the shuttle simulator. That was a lot of fun. But, like so in college, or the stick time on a Cessna 152 or 172. So they're single engine, you know, planes basically. And so they're they're not advanced, like, you know, the jets that fly like that. So I've gotten to do that. I am fortunate cam and gotten a pilot's license just because a it's really expensive. It's several $1,000 that I just haven't had to put towards that. But eventually, I'd love to do it. You can get a a pilot's license, private pilot's license, there we go. That's what I was looking for. As a diabetic, you just have to show good control of your blood sugar for about six months prior and maintain that. So you can pass the class to physical. And you can also get I believe in experimental pilot's license, but you can't make money from flying as a diabetic, at least that I know of as a type one, because they're concerned with the liability of. And I believe the terms were subtle incapacitation, and sudden incapacitation. And if you have cargo or humans, you know that you're responsible for the really big risk. And so that's my understanding of why you can't do that. And same reason for the military, because then you'd be putting other folks at risk if you know if something happens to you.

 

Stacey Simms  24:32

And in what context, though, and I apologize because I wrote down, F18 that I don't remember we were talking about trying to get more good people with diabetes to be able to fly more.

 

Ernie Prado  24:44

Oh, so definitely F18 is just one of the planes that I really love the beautiful they're so over powerful and they're just, they're sleek, and they're so cool until the Navy flies over them on carriers, you know, and actually have a buddy or two that flying is just kind of jealous. But no. So as far as I know, you probably would not have a type one diabetic find those, especially, you know, they're just not available in the civilian world. And since we can't join the military at the moment, and probably for the foreseeable future, there's, you can probably fly backseat, you know, as a passenger, but not as the pilot. But you know, I do, there's apparently a stunt pilot that does fly, you know, his personal aircraft at AIR shows. And he performs some really amazing stunts. So we can fly is just, it's a limited set of aircraft.

 

Stacey Simms  25:36

And you want to be a flight controller, you said, what is what is that job is that one of the guys that sits where we see the movies, you know, see the Apollo movies, they're sitting in the, in the back home on the front of the computer? What is that?

 

Ernie Prado  25:49

Yeah, so that's kind of the image that's conjured up when flight controller is talking to. So we have, so shuttle, and ISS and Apollo and Mercury and Gemini, they've all had flight controllers. And basically, if I controller that helps monitor the systems onboard spacecraft, make sure that everything is going fine for the crew members try to keep them safe, address real time problem. So it's a whole host of responsibilities. And so there's an entire team that does this, and it's going 24 seven, so there's always somebody monitoring the spacecraft, and it's fine. And there's Capcom, which talks to the crew, there's a flight director who's responsible for the mission. One of the disciplines that I can talk about is also which is operations support officer. And that's the group that I was in. They are responsible for mechanisms, maintenance, and things of that nature. There's then there's other groups such as Prop, which is propulsion. And so they all have different responsibilities. And but yeah, so those folks have, you know, responsibility over the crew safety, and, you know, to help them perform science, when they're in space, and just help maintain that aircraft or spacecraft.

And one of the terms that they use to describe a flight controller is a steely eyed missile man. And it's a throwback back to the early days of flight when we actually put astronauts on modified ICBMs and shove them up into space. So, yeah, I was trying to do that. I was working halftime in that group and halftime at the space vehicle mock up facility, which is where I still work now. That's where we train astronauts for the inside of the space station, and I had a big project coming up. And at the same time, I was trying to see if I could become flight controller. And I encountered some resistance from the medical side, because they were concerned about, you know, my ability to handle the stresses. And so I did have support from upper management saying that if I had the technical knowledge and know how and competent that they would support me in trying to still become flight controller. But Tom had this really cool project to create the note three mock up, that was, you know, had a large budget, and it was high visibility and a long term schedule. So I kind of gravitated towards that. And it was really cool, because it culminated in me getting to brief the ISS program manager on this mock up, bill for the ability, and I never thought I get the, you know, speak to a person like that. So that was very cool for a person that only been around as a full timer for about two years.

 

Stacey Simms  28:31

Yeah, and that sounds pretty amazing. This is kind of a silly question. But it's in my head after I mentioned the Apollo 13. In the movies, we watch movies like that, can you walk, can you watch movies like that? I can,

 

Ernie Prado  28:42

and I enjoy them. And so actually, this is this one's pretty cool. And we saw the co op, you get to do a lot of neat things, visit the historical sites and talk to historical people are influential people. So we actually watched Apollo 13, in the Mission Control Room where Apollo 13 was controlled. Wow, that was one of the coolest things that I've done. And I took a picture of the console that I was sitting at, and that same wall, a replica of that console was in the movie on the screen. And so I was showing both of them on one picture, and I was going, this is cool. One thing that I tend to do is point out the errors about that, and my friends are like just enjoy the movie. But it's it's kind of fun. And it's a little bit of the you know, the nitpick Enos of actually what's going on and that's wrong, this is wrong. But the the movies are good at inspire folks, and they get them interested in space. And be there just enjoyable, you know, it's what got me interested in it in the first place. And without that, you know, you wouldn't interest other folks. So like, for instance, gravity, that movie was just beautifully done with the cinematography. I mean, it's just incredible. And it sucks you in but there was a few technical details or are lovable and that's not quite right. Right. But overall, they're really I love watching them.

 

Stacey Simms  30:03

That's great. You know, and when we think about the space program, and you've mentioned Gemini and Apollo in the beginning of the space shuttle, and that's when I was a kid, the space shuttle was what was new, and it was so exciting. And it seemed like a few years ago, that Americans might not be that excited about space anymore. You know, the funding was going down, and people weren't talking about it. And then you have things like Scott Kelly's year in space that he just returned from where he was tweeting all these pictures out and getting people interested again, and we have, you know, the the interest in Mars and different projects. Do you feel like it's on an upswing again?

 

Ernie Prado  30:35

Oh, yeah, definitely. And that's such a heartening thing. So I was lucky and got to work a little bit during the time of shuttle that got the Washington Actually, this is a really cool experience that I just remembered right now, because you were talking about how you were around, you know, during the beginning of shuttle in 1981, which is the first launch. And if you haven't heard the video, or seen the music video, actually, countdown by rush, I highly suggest it for anybody. They attended the first launch of the shuttle Columbia, and they put together this just amazing video that kind of makes my hair stand on that when I watch it, because it's just so cool. And it's like, it's just really powerful. And I got to watch the last shuttle launch, not in person to hear Johnson Space Center and Sony Williams, who's an astronaut was right there, kind of next to me and a few other folks. And you know, she was an astronaut that has flown on the shuttle, and it was just kind of really cool to see her emotions for the final flight of the program, when it was closed out. So that was that was a cool experience. And seeing the the, I guess, resurgence or like the increasing enthusiasm about what we're doing is just so cool. And, you know, we can go out and advertise for ourselves, we really just kind of rely on the science that we put out to benefit, you know, every day portions of our lives. And spin off that influence people. So you know, a lot of folks on being NASA influences them, or their lives.

But you know, a lot of the technology that's around it has some that NASA influence. And so you know, movies like The Martian, and the mission that we just did with Scott Kelly are so cool, and so, so essential to keep folks interested in what we're doing. So it really does, it makes you feel proud of the work that you do and makes you want to do it better. Because really everything we do is for the benefit of our country and just afford, you know, knowledge for humanity. And that's, that's our entire mission is to learn about where we are and what's out in the cosmos. And it's really great to see people, you know, start to feel great about that.

 

Stacey Simms  32:49

And when you talk about the things that come from the space program that are relatable, I mean, you know, it's kind of jokey like oh, Tang, but you know, all the things that we use in everyday life didn't the insulin pump wasn't that developed, I thought I read a while ago, that part of it was developed because of NASA.

 

Ernie Prado  33:07

So I'm gonna have to check my history on that, because I'm not exactly sure exactly how we have impacted that. But if you look at some of the broader history, not just insulin pumps, integrated circuits were influenced by, you know, NASA engineers and advancements in technology. And, you know, coding and signals and mechanics and all sorts of things. So in a broad way, I'm sure it was benefited Somehow,

 

Stacey Simms  33:36

I just, we took a tour of the we took a tour a couple years ago of the Kennedy Space Center. And I remember them saying that because we all went What? So I'll look that up. I'll fact check that before we put that Yeah,

 

Ernie Prado  33:48

I'd be very interested in learning more about that. That would be so cool. And I can't believe I haven't looked into it already. If I taught you something, I'd be so excited that you did

 

Stacey Simms  33:59

and say, Oh, you know, talk to a rocket scientist. Didn't know something I knew. But let's get back to diabetes. When if we could. How are you doing now? I mean, you mentioned you struggled when you were in college and as a young adult, are you? Do you feel like you have incorporated more into your everyday life? You do? Okay.

 

Ernie Prado  34:19

Yeah. So I actually, as soon as you asked that, I looked at my pump, and I'm currently at 119. And I've been in my perfect range here for see at least three hours, six hours, 12 hours ago had a little blip above 224 hours, I had a little blip about 250. So I'm doing pretty good. You

 

Stacey Simms  34:36

were nervous. You were nervous about talking to me. Oh,

 

Ernie Prado  34:39

not at all. I do manage it a lot better. My A1C is not perfect. It's not eight right now. My goal is to get it down to those 7.5. But you know, using the CGM and you know, actually, you know, checking my my sugar with pricking my finger, you know, four to five times a day. It does help. Sometimes it can be hard to get the point Five times, or five times to check it in one day, but you know, I try to make it a priority as it should be. And really not try to brush it off at all, you know, I'll be fine, because it really does have a huge impact on my life and so levina looking to do is get back to work and out if you went back out about a year ago, and it kind of delayed me in that process. So I've started to start to do that a little bit more. So that's helping, and, you know, trying to eat better, has also helped. And, you know, I, I don't really drink a lot of alcohol, which, you know, also does help keep the numbers controlled, though I'm doing much better than it was in college. Because there was one point where I didn't check my sugar for four months. And when I think about that, now I'm going What in the world was I thinking?

 

Unknown Speaker  35:51

Yeah, well, you know, I and

 

Stacey Simms  35:53

I asked that question not, and I appreciate you sharing numbers. And I always feel really nosy when that happens, but but it just sounds to me like somehow you've gotten from that college kid who didn't want to check it. All right. And I appreciate you saying that, too. Because that's reality that happens to somebody who's now really accepted this and and doing your best was what you got?

 

Ernie Prado  36:14

Yeah. And, you know, I figured it's not going anywhere. Am I still frustrated about it? And sometimes wonder, you know why this happened, of course. But, you know, I'm trying, you look at the positive aspect of it. And so actually, you know, like Sarah Sanders, and I had, luckily had a chance to meet her. And I read her book and talk to her about it. And her view on it was just so positive. And just, you know, a woman make the best of this, that it had a huge impact on me. And you know, I've been more accepting of it. In the past few years, I remember when I first got my pump I was all excited about us showed everybody. So being in control of it also helped me be a lot more accepting of it. You know, when it was my numbers were out of range. I didn't want to think about it. And I didn't want to talk and advocate and teach people but I was just like, kind of burned out. So it's actually kind of like this cyclical thing where the better control you take of it, the more accepting you are, and the more you want to educate and get, hopefully, influence other people that have to do the same. And I'm not sure exactly how that works. It seems to be a strange tie. But yeah, I just, you know, I probably talked too much about it now. I think, folks, okay, or you get it, but yeah, I think it's great. Yeah,

 

Stacey Simms  37:34

I just jump in and say for now, I should jump in and say Sierra Sandison, if you're not familiar with her is of course, Miss Idaho. She were insulin pump in the Miss America Pageant. I think it was two years ago, starting the show me your pump, social media movement, how did you meet her?

 

Ernie Prado  37:50

So she came down to the ADA convention in Houston. And, you know, I'd heard about her a few years ago, because of why she did wearing the pump on her, on her on her body when she was getting the pageant, and I was just thinking, that is so cool. You know, she's old enough, or, you know, being proud of, of being diabetic. And I guess I hadn't ever thought of it in that perspective. And I was just like, you know, I really kind of admire that that's so cool that she's, and you know, just a response how parents are like, you know, you help my kid feel like that it's okay to be diabetic. And thinking back to the early days, and I had it and where I was told kind of young, just don't talk about it. It was it was really just a nice feeling. That's good to have that kind of inspiration for other folks. And so I said, Well, I will buy your book, read it. I'm a little hyper sided. I want to talk to her just because she seems really cool. And so I talked to her for probably God, who knows half hour at least. And so we ended up being, you know, friends on Twitter, and all that stuff. And so she's been, you know, a really cool person to know. And, you know, just somebody that I kind of look up to just for being such a role model for diabetics, and raising advocacy for it and all that.

 

Stacey Simms  39:09

That's fantastic. I love hearing that. And we talked to Sierra last year on the podcast, and she's just, she's just terrific. And she's also you know, she's this it will see in her words, I think she's like a real math and science geek too. She's really cool that way.

 

Ernie Prado  39:24

Yeah, I think she's actually chosen to pursue engineering, which I was just like, Oh, that's awesome. Yeah. If you ever need any help with with yourself or college, let me know. Because, like, I mean, you know, you got the common thing of diabetes that then you know, whenever I meet an engineer, I'm like, Hey, cool, you know, the pain in college, you've been through it. So I always like to encourage more engineers and get them into the into the STEM fields just you know, cuz we need that talent. And it's really cool to see folks be passionate about the stuff that dorks like, like myself, you know, like math and science, chemistry and all that. So Yo, it's awesome. We need more dorks.

 

Stacey Simms  40:03

All right, so what's next for you? What's next for you at NASA? What are you doing now? Where would you like to be in a few years?

 

Ernie Prado  40:11

So that's always kind of a hard question for me to answer.

 

Stacey Simms  40:15

I feel like it's a job interview. I didn't mean to phrase it like, yeah,

 

Ernie Prado  40:17

oh, no, it's okay. It's the way I think of it. I'm the type of person that kind of sets a goal. I don't know how in the world, I'm going to get there. But somehow I tried to chart my path. And so it seemed to work out in several instances for me, so I keep taking that approach. Currently, I'm a market manager, project manager at the svms. And so I lead technical projects to build mock ups, improve them, upgrade them to approve engineering activities and training activities, I lead with outside companies, other centers, divisions, and directorates. So it's kind of this big catch, catch all integration job. And I get to meet a lot of cool, interesting people and, you know, still get to use my technical background for projects, but also get to learn about the management side of the house. So you know, dealing with budgets, and, you know, managing a project. So that was something I didn't learn in school, and it's a cool skill to learn.

 

And, you know, the first few years, it was a trial by fire because I had no idea what I was doing, I was in the technical background. So currently, I've been involved in an agency project about how to apply models, a systems engineering, to the projects that we're doing. And it's an approach that kind of takes a consolidated view of projects, including cost development, schedule, requirements, activities, you name it, everything goes into one single source of truth. So that that's a neat project. And it will be reported to the agency headquarters here, by the end of the year, I really don't know where I see myself at though, I know, I'd like to continue here. And just keep being involved. And, you know, giving my small contribution to, to what I think is man's greatest mankind's greatest endeavor, you know, it's just an honor to be here and contribute to something. So I think scran and you're working amongst these, you know, so many folks that have a passion for what we do, and just they're so bright and talented. And, you know, I consider myself an average person here at you know, because there's so many bright folks out here. So, like I said, it's a hard question, eventually, if I can try to fly some knowledge base on down, and I will try to do that. I can. That's one of my goals. Right now. I don't know how it's gonna be achieved. But you know, I'm gonna work towards it. Yeah.

 

Stacey Simms  42:37

Let me ask you one more diabetes question. Ah, there are a phrase this, what would you say to somebody, maybe a 15 year old kid, maybe somebody older who's diagnosed with type one and is told, I'm sorry, but the dream you had, is not going to work out? At least not now. You are so positive about things. I'm curious, you know, how do you get past that? And what would you advise somebody else to think about if they're told, I'm sorry, but you just can't,

 

Ernie Prado  43:04

because of diabetes. So I'd say you know, at first, it's a little bit of a blow. Because some, it's something that's out of your control. So one of my friends who's a pilot said, you know, you'd be a shoo in, in the Air Force to be a pilot, because of your technical background, it sucks that you can't do it, because you're diabetic. And I was just like, I remember going. That's depressing. Um, but, you know, there, I think there are realistically some things that we probably can't do. And realistically, there's others that, you know, we're just told we can't, but we absolutely can. And so I would say, you know, fight an uphill battle, don't give up and try every single Avenue available, to try to do what you want to do. Because more than likely, there will be a way that you can find, and without folks, you know, kind of Blazing those trails. It's not going to happen. And, you know, I know, it's not the same thing. But going back to 1980, there were only male astronauts, and they used to tell women, you know, don't bother applying, you're not going to get selected. And now we have a number of female astronauts. And in fact, you have commanders like Eileen Collins, who was an incredible person to have in our astronaut corps, Peggy Whitson and, you know, Sally Ride and just a number of these very influential people that were told, you know, don't apply it. Why even try and you know, they forged the path. And because of them, now, other people are able to do that same thing with African Americans like Guy blueford and make Jameson. You know, they were astronauts, and in the earlier days, you know, they weren't selected. So I think that without butting your head against the current limitations, don't never, you know, what we can do will never be expanded. So fight the good fight. as cliche as that sounds.

 

Stacey Simms  44:57

That's a great answer. I love it. So thank you so much for joining me today. I'd love to check in with you periodically and see how you're doing. And it's just, it's such a cool story, and I really appreciate you spending some time with me.

 

Ernie Prado  45:10

Oh, absolutely. I appreciate you. Thank you for speaking to me. It's kind of cool to talk about some things I've forgotten and every day. Yeah, absolute pleasure. And I appreciate you know, the invitation.

 

Unknown Speaker  45:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  45:33

I will link up more information about where he is today. You can always find out more at Diabetes connections.com. I will of course include information about the super Guppy which is the project he is currently working on. He's the project engineer there. I'm trying to remember the last time I saw him you know, it's it's funny these days trying to remember when you saw anybody because of course, all of 2020 we saw nobody but I saw him at a friend's for life conference, I want to say two years ago, and I'm bringing it up because it's a little embarrassing. The last time I saw Ernie, he was chasing me down because I forgot my phone. I left it with him. And my phone also has my wallet in it. I have one of those cases where it's got my license, you know, my credit cards, all that stuff. And I hadn't even noticed it was gone. And then all of a sudden here he is running up.

 

Stacey Simms  46:18

Oh my gosh, so embarrassing. But thank you. He's just a Boy Scout, in addition to being a rocket scientist, and I do appreciate you. He's also been really great to Benny. He met Benny This is a different time. But another friends for life conference. It had to be four years ago helped me out people when it was at the Marriott maybe it was five years ago now. I'd have to look that up. But it was it was the year of the Irish dancers. Oh, my goodness. But anyway, we sat down with Ernie and we were just talking and introducing and Benny absolutely adores him and was eating this enormous dessert. I know Ernie remembers this because his eyes are so wide. It's like you're letting them eat this. But then Benny was going swimming. It was night he was doing this nighttime swim with some friends of his and they're having a really good time. And you know, you kind of need to carp up before you jump in the pool. And I was so excited to show him the next day to show Ernie that he was like 100 all night long after eating this enormous dessert. It's funny after during the show for so long, how I've become friendly with so many of you as you listen and as your guests and man that's so rewarding to me.

All right. Remember, Tuesday is our regular scheduled episode all this year. Tuesday will be the regular interview episodes with all the segments and info that we do. And on Thursdays I will have these classic episodes where we take a look back didn't expect to reminisce there at the end. But you know, as we look back on the last couple of years, that is bound to happen. So let me know what you think. I always like to hear from you. big thank you to John Bukenas from audio editing solutions. My editor who is great about taking on new projects like this, I appreciate you john.

 

Stacey Simms  47:43

Thank you so much for listening. I'm Stacey Simms. Until next time, be kind to yourself.

 

Benny  47:53

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jan 12, 2021

The Medtronic 770G pump was released in the United States just a few weeks ago and Robe Howe is one of the first to use it. Rob shares his first impressions and tells us what he'd really like to see in pump technology. (Rob is a paid ambassador for Medtronic, but they did not clear or review his comments for this interview).

Rob & Stacey spend a lot of this episode on other issues, talking about whether people with type 1 are "disabled" and what it means to use that word. Rob talks about achievement bias (and explains what that involves) and a lot more. We also find out about his fun modeling gig with Express and about his COVID-adjusted wedding in 2020.

Previous episodes about Medtronic here, including our in-depth discussion about the 770G and what else is on tap.

Our first episode with Rob Howe (all about using so-called Walmart insulin)

In Tell Me Something Good – legislative action, a diabetes blog gets a shout out and a new tip makes a difference for a site location.

And Stacey makes her predictions for 2021.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

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Tell me something good links:

New Washington State Law Caps Insulin Price

type 2 blogs

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Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Unknown Speaker  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week, Rob Howe is one of the first people in the US to use the new Medtronic 770Gpump. We'll talk about that. But our conversation got a lot more personal, including a discussion about whether most people with diabetes consider themselves disabled and everything that goes along with using that word.

 

Unknown Speaker  0:47

I want  to say like I Rob Howe, professional athlete, the guy who's goes and speaks and is like, you can do whatever you want. I identify as disabled, I am disabled, I have a disability. That doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just gonna quit and be like, you know, sayonara team

 

Stacey Simms  1:01

Rob is also a podcaster. And he turned a few questions around on me, we went a few places I wasn't expecting, including my hard “no” stance on Disney guest passes from years ago, and a lot more. And we do talk a lot about the 770G as well.

In Tell me something good legislative action, a diabetes blog gets a shout out and a new tip makes a big difference for site location. Plus, at the very end of the show, I'm going to do my predictions for diabetes in 2021, technology,  community, and more.

 

Stacey Simms  1:32

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome back to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with Type 1 14 years ago, my husband lives with type two, I don't have any type of diabetes. I'm the broadcaster. And that is how you get the podcast.

I released an episode on New Year's Day about the COVID vaccine. And we've had a big response to that the episode was about health care providers with type one who had received the very first batches some of the first people in the US to get that first of two COVID shots. But the response was mostly people wanting to know where they fall in the priority order for receiving it.

Dr. Ponder Dr. Steven Ponder was in that episode. And he's an endocrinologist in Texas. He had been trying to get Texas to allow type one into the higher tier. But it looks like this is going to vary state to state, I would urge you to jump into our Facebook group. It's Diabetes Connections, the group and I'm just start a thread. Let's try to get everybody up to speed whatever state you're in, link up the health department look up a news story that you know of let us know what's happening where you live.

Here in North Carolina, they're talking about chronic conditions for one of the phases but it's not clear if it's just type two with type one will be included. As Dr. Ponder said, How are they going to check? Right? Do we really want the people giving the vaccines to have to worry about you know, give me your paperwork or your type two type one. Where's your doctor's note? I mean, it's already so much less efficient than we all had hoped. I do think they are making good progress. As I'm taping this at the end of the first week of January. Here in North Carolina, where I live, they have announced that they will be using the National Guard to help out which I think is terrific. And as I mentioned with a husband who's got type two, with my 16 year old who has type one who is eligible for the vaccine, we are going to watch closely to see when it is our turn. But again, I'm hoping we can get a big Clearinghouse going in the Facebook group with information with sourced information about when and where the vaccine will be available, where you live.

My talk with Rob Howe about Medtronic and this talk really did turn into something more. It's not a typical interview for the show. I think we'll get to that in just a moment. But first Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us. It really kind of annoys me and Benny, it's not really the big picture stuff, right? It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management and with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to My Dario dot com forward slash Diabetes Connections.

My guest this week has been on the show before with a very different focus. Rob Howe joined me two years ago to talk about so called Walmart insulin which he used for a while as kind of an experiment if you want to hear how it went. I will link up that episode from 2018. Just go to Diabetes connections.com click on this episode or the show notes wherever you're listening We have a pretty robust search on the website as well if you prefer to search it that way.

Rob is the host of the podcast, diabetics doing things. He is a former Washington Generals player. That's right. He's the bad guy. He was on the bad guy team against the world-famous Harlem Globetrotters. And this year, Rob became a model in a very cool campaign for Express and he got married. So Rob has a lot going on. And we've talked about quite a bit of it here.

There is also a video of this interview over on our YouTube channel on Diabetes Connections over on YouTube, if you prefer to watch it's kind of fun to be doing more video interviews, let me know what you think about that. In addition to the audio, Rob is a brand ambassador for Medtronic, and he started using their newest pump, the 770G in December, we talked about that, and then had a conversation about everything from the word disability to why I never got Benny, a guest assistance pass at Disney. In fact, I put my foot down and said no to what he calls achievement culture within the diabetes community.

Always great to catch up with Rob how from diabetics doing things, podcasts, and so many other things in the diabetes community. You become the go to emcee, I see you all over the place at virtual events. Thanks for jumping on. It's great to talk to you again.

 

Rob Howe 6:13

Yeah, thanks so much for having me. I've become what I call, and literally no one else says this except me. I'm the host with the most Insulet on board. So yeah.

 

Stacey Simms  6:23

Oh, I'm gonna steal that the next time I introduce you, I'll make sure to say that please

 

Rob Howe 6:26

  1. Please do.

 

Rob Howe 6:28

I love it. Well,

 

Stacey Simms  6:30

listen, we've got a lot to talk about today, I want to start off by just jumping in because the latest thing for you really has been not a change of technology. You've been a Medtronic guy for a long time. But you've got the latest version of Medtronic pump. So tell me, when did you start using the 770?

 

Rob Howe 6:49

Yeah, so I am very fortunate. I've worked with Medtronic for a long time. And I've been a patient of Medtronic for even longer. So today, as of recording, it's December 16. And I think I've been on the Medtronic 770Gnow since December 1, right around there. So it was in the first wave of of Medtronic, folks, employees Ambassador group to get access to the new pump. And it's exciting. I mean, I think for me, I've been on the 670 g now for almost three years. So you know, one of the criticisms of the new pump is that it really isn't very different, in turn from a technological standpoint, except it does have what we've always been very critical. And I mean, we as the diabetes, greater community of the 670 was that there was no Bluetooth connectivity to the phone. So I think this is Medtronic response to say, Hey, we hear you we got to have Bluetooth connectivity. And it's great. It actually, the app is super intuitive, the mini med mobile app and it has your basically your sensor glucose like you would normally see on your pump display, but it also has your 24 hour time and range. So just a quick little swipe, you can get over there and see your your 24 hour numbers, which is kind of nice, especially if you've had a really good day, you can see that you know those high time and range numbers. So it's exciting. And you know, I think for people who are, you know, really into the nitty gritty, it's also a new transmitter for the sensors. So it's still the Guardian three sensor, but a new GL three transmitter, which just has a few of the, you know, annoying, calibration tweaks that some people have, I think more vocal people than I have have, for sure lamented. So the the new transmitter is excellent and has fixed a lot of the challenges from the early days.

 

Stacey Simms  8:26

We talked to Medtronic a couple of weeks ago, and I'll link up that episode in the show notes here to go through all of the features and what's coming next. But it really is interesting how so often these companies and it's not just Medtronic, I would kind of compare it to Omnipod dash right so they have one version, then they almost have a stop gap, which has some improvements but isn't the big shiny thing that we're waiting for you know the if you're looking at the technology so carefully, which will be the 780 which is out in Europe and will be out soon. But you know, I have heard a couple of people who have used Medtronic for a long time like you have say the phone stuff would be nice but I don't really need it. And now that you have it, you really look at it more i mean i don't have diabetes and so I'm trying to get myself from following Benny so often to not looking at it 24 seven, but was it really that different for you to kind of just look at your phone more than your pump

 

Rob Howe 9:15

right now. I'm operating mostly from home so there isn't a you know, work meeting where I would feel better about pulling the phone out versus taking the pump out of my you know, pocket and I am an insulin pump in the pocket person so I don't wear like a holster or anything like that. And obviously Medtronic pumps have tubing, but I think it's nice to just be able to you know, you're on the phone all day all day. Anyway, I'll admit I spend a lot of time on my phone and being able to click over in the night. You know, I think that's been the time that I've used the app the most when you know in when I'm laying in bed,

 

Stacey Simms  9:47

I think it's huge to have it on the phone. My kid is a pump in the pocket kid too. And he would never look at it. If he didn't have to. He's on the phone and it would you say maybe a couple of directions. He it would be really a big deal. If he suddenly lost that which he hasn't even had for that long, right? Well, anyway, you get used to.

 

Rob Howe 10:04

Exactly. And I think that's where I think as consumers, and this is sort of my you know, before getting more and learning more about what goes into diabetes technology from a FDA approval standpoint, and all of the sort of hurdles that they have to go through, you know, I was sitting there streaming a movie on my iPhone on an airplane, and I'm like, wow, if I can stream a movie on my iPhone on an airplane, we for sure should be able to look at your blood sugar numbers on a phone. But I'm very much like Benny, I love the phone, very familiar with the interface, I use it quite a bit. So I think, you know, in terms of having that convenience, it's just so nice. It's kind of just takes away, you know, I think Medtronic has really done a nice job in past years. And also going forward of really relieving that mental burden and making diabetes integrated into your life. And this is definitely something that makes diabetes just more integrated in the way that you already use technology, the way that you're already on your phone. And I can get a push notification. Now my alert on high if I'm, you know, I got my high alert set at 160 get the alert on high, it pops up in my phone, just like a normal notification. And I can take care of it then. So yeah, I really love it. And I think that's kind of like what you said with Benny, you get really used to it really quickly of having it there and having those numbers all the time. So it's just nice to have it a little bit more integrated into our everyday life.

 

Stacey Simms  11:15

Are you a big auto mode guy? Do you use the features of the 670. And now the 770

 

Rob Howe 11:21

I am I stay in auto mode. I'm a big auto mode guy. And I think the criticisms that I see of it online are fair, and it's not perfect. And I think Medtronic has done a great job of talking about those, you know, initially, this was like 1.0 of the hybrid closed loop systems, you know, so the algorithm is now in technology world is a little dated. But now, like you said, mentioned 780 coming soon, in the US. You know, the next version of that, I think is really exciting. But for me, I'm an auto mode guy. And I think the the biggest example I'll give for listeners is I love to play golf, I have a weekly golf round that I play on Sunday mornings, and I set it on auto mode. And before auto mode, I would go out and you know, my basil would be what it was and I have to set a temp target or attempt basil and you know, even before cgms I just basically have to have gummy bears stashed in my golf bag. And on auto mode. Thankfully, you know, I go in with no insulin on board in the morning if my morning starts off really smooth. And I can go through my entire round walking or in the cart and not have to worry about correcting and not have to worry about high so it's it's really nice. I love auto mode. That Blue Shield gives me a lot of confidence.

 

Stacey Simms  12:25

That's awesome. It's funny though, looking at as we're recording this on video I can see into your house is basketball stuff all over the place. Now I know you're big basketball player. We've talked about that we talked in the past. So I'm interested that you brought up golf and rather than basketball.

 

Rob Howe 12:38

Well, you know, I'm aging gracefully, Stacy. Like, you know, I think I still love playing basketball. And I think that's one thing that sentimentally I think there's been so many terrible things that have been taken from us because of COVID. And the thing that's been really eating away at my heart, and my soul is not being able to play basketball and because it's just not safe. And I think in Dallas, especially we have so many cases and I've been able to do some training in a gym, by myself wearing a mask, but I just missed competing and I think golf, you know, you're competing against yourself. So it kind of scratches my itch a little bit. So that's been my COVID pivot.

 

Stacey Simms  13:14

That's awesome. I've been playing golf since I was 22. So I'll take you out sometime when we got

 

Rob Howe 13:18

ready to say no more. I'm ready.

 

Stacey Simms  13:22

You know, one of the things that really made me smile in the last couple of weeks was that terrific video you posted. Your it was it was announcing the partnership you have with Medtronic now but the video itself was so great. It was you know, if you haven't seen it, we'll link it up. How would you describe that like an athlete grabbing a sponsorship or getting recruited for a team?

 

Rob Howe 13:42

Yeah, you know, I, I was stuck on this concept of signing day. And this announcement, this announcement kind of felt like that. And for me, you know, I've worked with Medtronic for a number of years as an ambassador as a consultant. And now kind of deepening that partnership into a more formal role. It just came to mind. And I thought, you know, this is true to who I am as an athlete, and seems like a fun way for and you know, that's a big part of what we're working on together is doing some outside the box, maybe not traditional Medtronic type announcements. And I would classify this as sort of in that realm. And I'm just very fortunate that my team and Medtronic is so on board with hearing sort of outside the box ideas. And so getting to produce this fake press conference about my signing day and learning that there are no Medtronic hats and having to get a Medtronic hat made for me to put on so now I have like the one on one of one Medtronic cat, which I love. It was really cool. And the response was great. And again, I just I'm glad that my team didn't roll their eyes at the pitch. They were like, Oh, yeah, this actually sounds great. We'll we'll do this. And I can only imagine as it went through legal what legal was thinking of just reviewing that video, so very fun. That is funny. I

 

Stacey Simms  14:48

think I have one of the remaining animus shirts left in existence from what I used to do appearances for them.

 

Rob Howe 14:54

Yeah, you gotta gotta save that merge. It's like it's retro. You know?

 

Rob Howe 14:57

That's really funny.

 

Stacey Simms  15:04

Right back to Robin just a moment, but first Diabetes Connections is brought to you by g Volk, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Jeeva kaipa pen comes in. It's the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give GMO correctly. I'm so glad to have something new, find out more, go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma visit g VOCA glucagon comm slash risk. Now back to rob, and he is talking about new technology that he's looking forward to.

 

Rob Howe 15:52

I'm very excited about the integration of the phone as the software back end to the pumps and the devices. I think that adding diabetes technology to the Internet of Things is a huge milestone in healthcare. It's a huge milestone for people with diabetes. And it's just going to make this whole user experience more intuitive. I think the DIY loop community has shown how you know how powerful it can be when technology and people helping each other and really dialing in features that they need and that are important. And working with some of these larger manufacturers, I think kind of opened up this Pandora's box of questions for these bigger companies to ask themselves are our technologies right for our customers, are we meeting them where they are, and I'm sure as you encountered in your conversations with Medtronic, that's a big focus for them right now is meeting patients with diabetes where they are. So you know, you've seen this year now the acquisition of companion medical, to bring multiple daily injections into the Medtronic suite, which previously they were a pump company. And I think now they're really focusing themselves on being a diabetes technology company, which is cool. And I think it's good for patients good for Medtronic good all around?

 

Stacey Simms  17:01

Well, it's interesting, because for years, people were saying, you know, this stuff's got to look better, you live with it, it's on your body, you want it to look less like a medical device. And there was a lot of pushback from people within the community, as well as on the technical side, who were saying who cares, just make it work better. And I think we are at a place now at a point now where there is enough, even though there seems to be fewer pump companies, there's enough competition, that they do have to look good, they do have to feel better. I mean, I don't remember what you used when you were first diagnosed, but it's changed a lot in the Gosh, in the almost 14 years I've been he's been using an insulin pump, it's not a brick anymore.

 

Rob Howe 17:35

Right, it doesn't have a Gameboy screen, it doesn't look like a calculator, you know, I think all that really comes down to me is just user experience in general. And you look at iPhone, for example, and the transformative qualities that that piece of technology has had on society in general. And I think that that is sort of the the gold standard now and that filters down to healthcare companies, something that we talked about in my agency world is that, you know, most people, when they think of competition, they think of, you know, immediately in their industry, their top two or three competitors. for consumers, they don't look at it necessarily that way, they're looking at you online as your competition is Apple, and Chase, and Amazon. And if your online experience, if your device experience doesn't mirror those, and isn't on par with those companies, which is really unfair for a lot of businesses, a lot of brands, because they're they don't have the ability that or the scale or the infrastructure to deploy at that level. But if you're not on par with those companies, users will tune out, they're looking for best in class. So I think that's been a big shift for all the major diabetes technology companies, and I think outside of diabetes as well.

 

Stacey Simms  18:40

Alright, let's move on just one of those other issues, you and I saw a conversation online that we wanted to talk about, I think this was mostly on Twitter, where the word disabled or disability, it's interesting when using that with diabetes, because Ben, he was diagnosed before he was two. And all I heard for this first few years was he can do anything, it's not going to stop him. But then you get to school. And it's like, he needs a 504 plan because he has a disability. And he's covered. I have my own take on it. And I'm curious what you think is the person who lives with diabetes? Is that a bad word for you?

 

Rob Howe 19:11

You know, that's really interesting. I seen that conversation. I think I want first of all people to know that I see both sides. I think I see people who argue on one side or the other. I you are seeing and I think for me, it's very similar to your story of Benny, you know, I was told from the get go from the jump that whatever dreams you have for your life are still within reach. I have perpetuated that idea at the beginning of all of my talks, all of my messaging, I believe I'm living proof that you can do things with diabetes if you want to and take care of yourself. I mean, there's other factors involved, obviously, but at the same time, I think denying the fact that you're disabled denies all the hard work that you put into your life to stay alive every day. And let's be honest, I think none of us would put the amount of work mental, physical, financial into anything else that we put into diabetes without compensation, expected compensation or some sort of like just reward you know, and I think that's really where it nails home for me is like if you factually like scientifically, under the Americans with Disabilities Act or the ADA, people with diabetes have a disability. That doesn't mean that you can't do the things that you want to do. But it also doesn't mean that you're not disabled. And what really reinforced this for me was a few months ago, there is a documentary on Netflix called Pistorius, which is about Oscar Pistorius, the Olympian who was born with defects in his legs, and he runs on the Nike blades, the legs that that allow disabled runners to run. And he competed not only in the in the Paralympic Games, but also against non disabled athletes. But in this documentary, and obviously, tragically, he murdered his girlfriend, killed his girlfriend, and you know, is on permanent house arrest, I believe it was so interesting to see the rhetoric by which he referred to his situation, his disability, and he's like, I don't identify as disabled. And that was something that I think, in the early years of my life with diabetes, when I was a younger man, less gray hair. But I identified with that I was like, I don't want people to treat me differently, I want to show them that I can do this. But when you deny that disability, again, when you when you close yourself off from things like diabetes community, when you close yourself off from benefits, like your 504, when you close yourself off to identifying as disabled or taking advantage, God forbid, you don't take advantage of the concessions that have been granted to you because of the struggle and the burden that you're carrying because of this disease. You know, I think you close yourself off to all the work that you're doing. And that's really where I want people to know that like, hey, yeah, I at face value, am a fit, athletics, successful, quote, unquote, successful person with diabetes, but I very much identify with Own your disability, that doesn't make you and I think there's a lot of conversations about ableism that I think we as a culture need to do better about because I think you alienate people who are disabled by saying, Well, I'm not I don't identify as disabled or I have a disability, but I'm not disabled, I think those are our negative, you know, negatively affect people who you know, really identify as disabled. So I want to say like, I Rob, how professional athlete, you know, the guy who goes and speaks and it's like, you can do whatever you want, I identify as disabled, I am disabled, I have a disability, that doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just going to quit and be like, you know, what, sign our team, but it What it does mean is that I see you out there struggling, the burden of diabetes is taxing, I feel you, I see you. And I think it's better for all of us to just work harder on accepting the fact that with diabetes, you have a disability that allows you some advantages, and allows you access to some things that people without this disability don't have access to. And to deny yourself that is, I think, a disservice to yourself.

 

Stacey Simms  22:57

It's such an interesting topic, because you really centered on what bothers me the most about it. And that is that as a society, we look down on disabled people in our language and our actions, it's just baked in. And it's come out so much better in the last few years that we're even able to talk about it. You know, even in the elections, I never thought about that. You know how we don't help. We don't even make it equal access for people with disabilities. And so there's this whole society burden of not wanting to admit that we have anything wrong with us, because then we're stigmatized, it doesn't even it's not even just diabetes. But I also think that, you know, trying to raise a child with type one, many would never say, I don't think he would say even today, and you know, it's not it's his voice is not mine to speak for, I don't think he would say I have a disability, I don't think he would raise his hand like you were doing. But I do think that he should, because all of the fights that have gone before, you know, it's easy, or it's easy, it's never easy, but it's easier to be a elementary school kid or a middle school kid. Now with a pump or a CGM. And with all the education and with a 504, than it would have been in the 70s, or the 80s, when a kid was doing shots and couldn't leave to go to the bathroom, and we've heard all these horrible stories or an employee back then it wasn't protected. And I will say he's had an easier because he has a lot of access and a lot of privilege, you know, these words that we throw around, but he really does. He's got me as his mother with a big mouth and a microphone. But also, you know, I guess I'm trying to say is all that work that went into protecting people with disabilities, as you said, it's really important to honor now, and to understand that if you're a cashier, and this happened in North Carolina, and in other states, leave your cashier at the Piggly Wiggly, and you need to treat your blood sugar with juice, and they won't let you you're covered. You're not gonna lose your job, we're gonna get paid back. And that's the kind of coverage that I think we need to think more about. But I will tell you a funny story about how I didn't help me and I stand by this when we went to we've gone to Disney World many times never been to Disneyland. We live on the East Coast but we've been to Disney World many times. We've never used the disability pass or the guest assistance. Pass or whatever they call it. The reason is, because when we first started talking about it, it was presented to us like a reward. It was like, Oh, you have diabetes, you have this great thing, and you can cut all the lines. And it wasn't presented to me as, hey, Benny might have a low blood sugar or might have a high low blood sugar, you know, high situation, you might need it. And I said to myself, I'm a crazy Disney planner, like, I am good to go. We don't wait in lines, whenever because I plan it. I'm, I love it. So we never did it. And I've talked about this, I was called out on it at a conference, once we're just having a casual conversation, and somebody in their 20s said to me, you know, you're doing him a disservice, because you're teaching him that he shouldn't take advantage of what's out there. And I said, Well, he shouldn't because it's not a reward. And she said, it's not a reward. It's not like a golden ticket, it's there if he needs it. And if you don't need it, fine. But if he needs it, when he goes, he shouldn't feel bad about using it. And she reframed the whole thing for me, and we still haven't had to use it. But I have definitely been less judgmental, and Kinder about other parents that I know who have used it. So if you're somebody that I've, I've been snarky too. I apologize. That's what I think

 

Rob Howe 26:05

that speaks to your capacity to learn, Stacy, I mean, you know, we all this would be shocking, probably not to no one. But we don't always make the right decision. You know, and we learn new information. And we reframe conversations. And, you know, I'll piggyback on that I, when I was younger, I was traveling a lot for basketball. And I like to get on the plane early, because I was like, Oh, I'm flying Southwest, I'm in the the B section, I'm not going to get a great seat. But since I have diabetes, that's, that's all good, I can go get whatever seat that I want. And then I stopped doing that. And I did that bait for a couple of reasons. I think consciously, I would see people who needed real assistance to board the plane early. And I wanted to be respectful of their space. And whether it's wheeled wheelchair access, or, you know, just extra medical supplies, I find that the you know, like the the accommodation that is made on airlines for people with diabetes is mostly to make sure they can get their medical supplies nearby on with them. And I, for the most part, my supplies, because I'm a dude probably are always a smaller footprint than some of my lady counterparts. And also, maybe I'm just a little bit more of a free spirit and be like, Hey, you know what I'm going to take, I'm going to be out of town for a week, I'm going to take two or three infusion sets and a couple of miles Insulet in my backpack, and we're going to go for it. So it was always close by to me anyway, and all that to say I don't do it today. But I know it's an option. And if I feel like the flight is oversold, or I'm gonna have to make a quick connection, and I want to make sure that my medicine is within reach, I will take advantage of it because I know it's there. And I think having that knowledge and being willing to accept that assistance except those accommodations. And and knowing that that space is available for you is positive. Yeah,

 

Stacey Simms  27:51

I mean, for me, as I have learned and changed my mind, and I probably will continue to my philosophy is now if you need it, or think you might take it, it's there to help you if you think it's going to you know it be if there's someone else's more need. If you know you don't need something, right. It's like parking in a handicapped spot. When you really don't need it, you're driving your grandmother's card, it's got the ticket on it, and you're just like I'm in a hurry. Don't do that. Right. But you know, but if you need it, use it. And don't be embarrassed or ashamed. And I hope all of you don't even know how to if I'm even saying this the right way.

 

Rob Howe 28:27

I think there is there is shame wrongfully pointed out, people who look. And I think that's back to that sort of ableism narrative perpetuated in this country. You mentioned like the election. I'll give you another example. Governor Greg Abbott in Texas is in a wheelchair. He had a there was an accident when he was a child, and it caused him to be paralyzed from the waist down. So while I don't agree with a lot of the things that he does, politically, I stay away. And there's been a very big movement online of people who disagree with him, staying away from the low hanging fruit of making fun of his wheelchair, and his disability, because that's not what makes him make poor decisions. from a policy standpoint. That's just the easiest, most that's just like a kid, when you're young kids pointed the first different thing that they can see. And oftentimes, that's very hurtful. But we are adults. And we can see that, you know, that that's unproductive. And I think, again, coming back to not not alienating anyone who has a disability. It's it's more focusing on policy and actual, you know, politics in the case of Governor Abbott that are detrimental to what's going on here, not his disability, I think his disability is completely off of the ballot.

 

Stacey Simms  29:37

Yeah, it should be it really should be in the diabetes, so much of what you all deal with is invisible, or, you know, you're able to make it invisible. So it's even harder in some ways. So I don't know. And I

 

Rob Howe 29:48

mean, I think even even on that point, there seemingly is a stigma to, you know, letting your diabetes be shown. And I think there's a lot of people who share they're now very proud of their cgms they're proud of their pumps. To wear them out. They're proud of sharing their numbers on social media. I you know, I get a lot of laughs from people sharing your 69 blood sugar's with me and, you know, I think that that sort of empowerment and saying hey I can I can be publicly facing with this and there's a community with that is great because, you know, look at me I'm like the poster child for some of the negative achievement culture things around diabetes I am you know, handsome white guy who used to have a six pack and you know, got to play sports and live his best life. And you know, he's not held down by his diabetes and what you don't see our bloody sights. And you know, all of the adhesive that you got to wipe off your arm after you change the site, or, you know, the feeling of less than after you're at a pool party pre COVID, and your site got too wet and you got pulled out really easily and you have to go home, you know, or just waking up on a vacation with a high blood sugar and it ruined your day. Like, those things don't always get shown. And I need to be better about sharing some of those low moments personally, on our platforms. But you know, just because you're not you don't look like a Olympic endurance champion with, you know, hollywood abs and a great tan and you know, living in your best life always time in range at 100%. If that doesn't sound like you, that's super okay. And I see you and that doesn't mean that your life with diabetes is less than I think there's there's downsides. And I and I've benefited a lot from achievement, culture and diabetes, but my love, I'm an I'm an achiever, that's what I try it. That's, that's sort of wired into me. And, you know, as I get older, I learn more about myself and why I do things. And I love following the rules. I love having a structure so I can try to achieve that's just what speaks to me.

 

Stacey Simms  31:40

Wait, I need to ask you though. Okay. I love everything. You've said, achievement culture, though. I'm not up on that as the world's worst diabetes. Mom. I mean, I'm kidding. But you know, I'm all about mistakes. And that's been my platform. And I mean, my brand, I have to call it that. But that's truly how I parent and I've never gone for more I'm what does it cheapen culture mean? Is that that you can do anything? Or I'm only showing the beautiful stuff? or What

 

Rob Howe 32:04

does that mean? I think that's part of it. I'll reinforce something that I'm sure will speak to you, in a way think about podcast guests. What's more interesting to someone who like at face value, we have two people, we've got a mom with three kids who gets her kids to school on time, leaves with diabetes, and you know, is just juggling a regular life. Or we have you know, two time Olympian bobsledder who, you know, has been around the world 50 times and you know, has been on the ESPN body issue or whatever the case, right? So at face value as a journalist, who are you going to pick for the more juicy story? Yeah, the bobsled guy, the guy, the boss like guy. And I don't know, any type ones that bobsled. So I think it's a good sport, because I'm not singling anybody out in particular. But I think as a diabetes community, I have also been guilty of like, Oh, I'm in this position where I can go speak or I can have, you know, people follow me and they follow the podcast, and I get these opportunities to represent people with diabetes. So I got into this sort of negative pattern of thinking where I was like, What do I have to do next? Like, what is my, I've already given my podcast, talk to all these jdrf chapters? Well, they're not going to invite me back next year to give the same talk, I've got to do something else that achieve something else. So like, right now, even the talk that I give is called from professional basketball player to professional diabetic. And inherently in that title, while it is good, and people click on it is ableism. And it's like, oh, you're only worth speaking at these events. If you achieve something crazy, like proven playing pro sports. And I think I'm really trying to be more aware and more, not cautious is the wrong word. But just more mindful of the things that I say and the things that I do that are rooted in an achievement culture that rewards extraordinary feats, and also tends to erase living a normal life and making that unsuccessful.

 

Stacey Simms  33:56

I'm going to arm chair psychologize on why it didn't resonate with me, moms aren't allowed to have achievement culture, we are not allowed. And I'm using that term very loosely, because Screw it, I'll do whatever I want. You won't allow me. But truly, if my brand was the best diabetes, Mom, I got it right. And you don't or professional mom, right? You're not going to see anybody talking about that, because we don't talk about moms that way. And I think that's, I know, this isn't about me, I'm glad to have you on as a guest. But I couldn't help but share that because of what you said, I was thinking to myself, How on earth would I achieve something like that? Or what can i and it's really interesting to think about it in those terms. And I think a lot of diabetes moms, what resonates with us is you know, oh, I'm the worst I made a mistake. I'm failing my kid, I got a report card. You know, it's all this negative talk. And that's a problem in and of itself. And you got other things to work on. You got to worry about. I'm succeeding. I'm great. You want to bring me to talk because I'm doing so well. It's so fascinating how we can do this.

 

Rob Howe 35:00

You know, and I think too, you know, speaking to diabetes moms, which I love, and I think that's a demographic of people, I never thought I would get to meet as intimately as I have. And, you know, I think people like me, and people who achieve are great to show to kids, you know, because hey, look at look at Rob, he's living his best life. He has a podcast, he talks about diabetes, he's not embarrassed. And I live for those moments where I can be the person that I needed when I was 16 years old, and have somebody who's accessible and wants to give back and wants to have those hard conversations and can say, you know what, I do see you man, like, you know, your 16 year mom doesn't know what's going on. You don't want to talk to her. And somehow I managed to remain young looking enough that I can communicate with somebody, hopefully,

 

Stacey Simms  35:43

you when you talk, you're like with Newsela What are you like, 30?

 

Rob Howe 35:46

I'd like 32. So yeah, I mean, I see. But you know, Stacy, you're not on tik tok. Right, you know, you know, if you put me on Tick tock, I'd be so canceled. I can't dance. You know, I mean, so I think for me, I just want to try to remain like as tuned into what people with diabetes are going through, that they may not even be aware of. And I think this is in this sort of chronic, all the chronic things that we're juggling, I think chronic focus on achievement, within, you know, some of the diabetes online community cultures is important for us to call out and I think I've benefited from it. And it's important for me, it's important to me, that I make sure to bring people in, who maybe haven't benefited from it and use that to highlight important stories, because you know, what's crazy, and surprised me back to the podcast example, when I first started, and I was really, really digging into what episodes are resonating with people, the one that was far and away the most resonant of my first like 15 episodes, was really the most simple basic, it was a story of a type one mom and how she prepared for her first and second pregnancies with T one D. And, you know, for me at the time, like a 27 year old jock tech bro. I was like, you know, it was a great conversation. And my my friend, Lindsay, who's my friend in real life, did an amazing job. But I never would have guessed that that would be the one that would have taken off of the first group. And it wasn't necessarily the achievers. It's the people who achieve in spite of there being no big reward publicly.

 

Stacey Simms  37:15

Yeah, well, I think we need and I know you'll agree with this, we need everybody in this community, right? We need the people who go up Mount Everest meet the people sitting at the desk job. But what has resonated with my listeners is anybody they can learn from. And I think it's interesting. And especially at first you want those high, high achieving successful people, those Olympians, and those rock stars, because as a parent of a kid, you can look at this person and say, Okay, this person was type one is super successful. So my kid probably has a pretty good chance of being a mid level executive, you know, at Staples, or whatever, right? They're going to be okay, or IBM, I shouldn't, whenever IBM even exists anymore, I'll show my age. But, you know, we do need those other people who have shown us how it's done something as complicated as a pregnancy with type one to something as simple as, it's not really that simple. But how did you transition from elementary school to middle school with your kid, right? Those are the things that we all want to learn. And I think what's really cool about social media, and somebody like you who's you know, super big on Instagram, and all that stuff, is you get to show, as you said, the cool looking stuff, but you know, it looks great, it looks perfect, but then it's also a chance to show all those crummy site changes. And those days when you don't feel good. And you don't have to polish it all up. I mean, you just snap a picture or talk about an Instagram. And you do that all the time. I think it's great.

 

Rob Howe 38:29

Yeah, it's new. You know, I think maybe I've even mentioned it before in this pod. But in 2018, at ADA, I found this poster board study in the in the poster Hall, talking about the ANC outcomes and involvement in the diabetes online community. I mean, just that sort of osmosis of encountering people with diabetes on a regular basis, and the things that they do makes you better at diabetes, I don't know. It's just it's normalizing. And I think that's what's so important, and what the Internet has brought. And I think even still, I'm even more learning about sort of the micro communities and diabetes, where you're able to find people that look like you people that are interested in the things that you're looking for. And otherwise, like, where would you find those people. And you go back to when Benny was diagnosed, you basically had the only people in your immediate area were the people that you could stay in contact with early blogs, maybe kind of just starting to sprout. And now you can just go to some of these big diabetes accounts and search for people or look on the hashtag and look at the locations and say, well, wow, there's somebody with diabetes there. You know, I got to be a part of this really great campaign this summer with express a global brand, you know, and

 

Stacey Simms  39:34

Oh, yeah. Wait a second. Wait a second. Tell me about that. Because that wasn't diabetes, you're like this, like a model? I mean, right. Or model. What was that? That was amazing.

 

Rob Howe 39:42

I can I guess I can put like publish model on my resume. Now. You know, what's cool about that campaign, and first of all, the Express team was really great to work with. They're all pros. And I think just hearing sort of the creative outline of what they were trying to do as a person with diabetes as a person with a disability as a person with something that makes them different, was just really cool to be there representing people with diabetes. So they sent out like a cold casting call, it had a bunch of stuff, as you know, or maybe not like, I'm very interested in fashion, I love style is something that I just I don't know why you

 

Stacey Simms  40:16

post your outfits on Instagram,

 

Rob Howe 40:19

feel free to gather fit pics are my thing. I love them. And you know, my wife and I are currently you know, just having a turf war over who needs more closet space. And I will not lose, I will not lose that, that I just don't put it on put on record. But the cool thing about Express was they said, Hey, we're looking for people who are on Instagram, but it's not a requirement. We're looking for people who have some sort of social good or community type. It's not required. We're looking for people who have an interest in fashion, but it's not required. And I was like, wait a minute, I have all three of those things. Let me like really try to get this. And so it was a cold call. I put together a pretty good application and response. And then I set it and forget it. And like it was 90 days later until they got back to me. And I sort of put it out of my mind. And they said, Hey, Rob, like, we're really excited to have you part of this campaign. Like, can you talk on this day? And I was like, wait a minute, did I book it? And they said, Yes. And so it was really cool to be able to out a big panel. I know, first of all, I was all over the world. inexpressive. I mean, it was a year of COVID, obviously, so not as many people saw me, but like on the front page of Express calm, very visible. And I was not just a model, I was representing myself, I was like Rob, like, hey, Rob is the Express model, and he lives with diabetes. And that was something I had never experienced on a mainstream level before. It's one thing to go to these diabetes events and celebrate those all together. But to be different on a panel full of other amazing superstars, frankly, like, who have achieved way more than I have. I was there as a person with diabetes. And I got to talk about like at base level what type 1 diabetes is and talking about the insulin affordability and talking about what it's like to have an insulin pump attached to your body at all times. And to see people be like, wow, I had no idea about any of that was just really cool to be a part of and like tan France from queer. I was the host on one with tan France. It was unbelievable.

 

Stacey Simms  42:07

Was he nice?

 

Rob Howe 42:08

Oh, yeah. Oh, how can he he's like he was so giving. He seems like the nicest guy, an absolute Pro. And honestly, I've done a lot of interviews. I was admittedly not really super nervous for our conversation today. Because I know you and I figured it would be nice and easy, but I was like sweating bullets. Getting ready in my like this in this office in here for 10. France. I was like, like, What's my name? Like? What do I do just like to make sure I don't stumble, you know, but it was a really awesome experience. I'm so grateful to have had the opportunity. And, you know, hopefully it's the the first of many. That's awesome. You know,

 

Stacey Simms  42:39

I worked at Express. When I was in college, I worked at the express in the carousel center mall in Syracuse. So if you shopped there in 1991 or 92, I helped you out. Not you, Rob, you're looking like you're looking through the time. You were not there. It might be wondering. Well, the

 

Rob Howe 42:57

thing I was actually thinking about is my wife was born in Cheryl in New York. So he was born in 1991. So maybe her mom this call

 

Rob Howe 43:05

is over?

 

Rob Howe 43:06

Yeah. Yeah, sorry. Technical difficulties were not cut off. But yes, my wife is a is younger than I am. Which is really funny. And yeah, that's a small world. I didn't know that. You had the upstate New York time?

 

Stacey Simms  43:19

Oh, yes. I went to Syracuse University. And then my first job was in Utica. And then I moved back to Syracuse for my another job. And then I came to Charlotte where I am now. I was up there for 10 years in the snow.

 

Rob Howe 43:30

Oh man. very snowy. Very Yeah.

 

Stacey Simms  43:31

But I grew up. I grew up in New York, so not too far.

 

Rob Howe 43:33

People were asking me like, so do you shop at Express. And I said, You know, I haven't shopped there recently as much. But when I was getting my first job, and I needed to get rid of my college, bro clothes and like, put on some real professional clothes I went to express so it was like cool to be like, oh, they're like, yeah, like, that's a big part of the consumer that we're trying to reach. And you know, really people who have an interest in fashion, this is a first step for them. And it was it was cool to be very, I felt very seen and very, the team that express was awesome.

 

Stacey Simms  44:01

That's terrific. Yeah, I worked there. And then I got a job at a radio station in Syracuse. And then that was the end of that. never looked back and worked weekends. Why are

 

Rob Howe 44:09

you found it you found your Yeah,

 

Stacey Simms  44:12

I knew what I wanted to do was very cool. Are you going to be working on things like that is modeling something you would like to continue to pursue or the fashion industry?

 

Rob Howe 44:20

Yeah, tell me what you're advertising I do to being a model for Express wasn't on my vision board for 2020. But I don't know, it was cool. It was just just to be a part of it to, you know, be in front of camera. Like you mentioned, I work in advertising and have been parts of shoots like this, behind the camera and working on the campaign and working on the creative direction, but to be in front of the camera and kind of collaborate with people whose jobs I know intimately. And it was a very small crew because of COVID. And they came they came to Dallas and it was cool to just be able to be in a small collaborative group of people who like I was just a photographer, the director and the videographer and myself. And we just got to hang out all day and talk about ideas and be creative and Yeah, I think I would love to do that again.

 

Stacey Simms  45:01

Nice. You know, we've been talking for a long time, I didn't even ask you or congratulate you on your wedding, which happened this year. Yeah. So congratulations on that. That's Thank you big, big,

 

Rob Howe 45:10

wiseguy big fan of my wife.

 

Stacey Simms  45:13

Good to hear good to hear what's up with you all in 2021. I mean, you're moving ahead with Medtronic. Moving on with the ad agency, you are married, man. I mean, 2020 was a difficult year, let's admit that. But any anything on top, I think I'm almost afraid to plan for 2021 in a way,

 

Rob Howe 45:29

me too. I I don't want to get too far ahead of my skis, you know, I think we are still a ways away of putting COVID completely behind us. And I also want to be very present in like, how What a tragedy it is. And I think even personally, within my friend group, there's been some very recent developments that are just awful. So I think we need time to heal. And I think we need time to, you know, mourn sort of our old selves, you know, like it or not one way or the other, we're all different because of 2020. And hopefully, we can build sort of on the ashes of everything and be better to each other longer term. We got some cool projects. I think this this question came from Peter from the, from the Instagram story that I posted the other day. And, you know, we're I have a cool series that I'm working on called more than a diabetic, which is going to be debuting next year with some awesome community members. So that's up first. You know, in terms of brand partnerships, obviously, Medtronic has a couple other long term partners that I've had that I want to do some deeper, cooler campaigns with, I'm sort of in a, I don't need new stuff I really want to care for and sort of nurture my existing relationships. And my existing, I don't know whether partnerships are you know, I have my a lot of irons in the fire, I don't need more irons, I need to just really focus on you know, my relationship with my wife, my relationship, my family, my my two businesses, and really focusing on being a good steward of what we have and continuing to do, right for people with diabetes. That sounds like a great plan. I want to have some fun, you know?

 

Stacey Simms  46:55

Yeah, definitely. And hopefully, we can see each other again and travel a little bit towards the end of the year. And I would just love that. That would be wonderful for me.

 

Rob Howe 47:03

Yeah. If I want to manifest anything for 2021, I put my hands in the air because I'm manifesting this my manifesting. Okay, if you're listening, you're missing out. I want to go on a honeymoon with my wife in 20. Oh, love that. That would be a fun thing. Travel, you got my wheels turning, I love to travel. And I have missed that sort of being held down at the house this year. So Excellent. Well,

 

Stacey Simms  47:22

I hope we can do that. I'll keep you posted on anything I can help with. Thank you so much for spending some time with me, Rob, it's always fun to catch up. And you caught me, you know, me talking more than I usually do on these interviews, I think but thank you.

 

Rob Howe 47:33

I like that. I think it's just the my inner interviewer. And, you know, thank you for all the work that you put in Diabetes Connections. I think when you're a diabetes mom, there's so much work that goes into that anyway, and I just applaud people like you. And then frankly, there aren't that many like you at this point. You've been doing this a long time and do a great job. So I hold you in high regard. I'll just leave it at that you do a great job and I appreciate you.

 

Stacey Simms  47:55

Well, that's very good. Thanks, Rob.

 

Announcer 48:02

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  48:08

I'll link up lots more information about the topics we spoke about, especially the Medtronic pump if you'd like more information on that, and you can go back just a couple of episodes. We had the folks Medtronic on in the fall of 2020. To go through all of the details. I'll link that up in this episode as well.

And I'll put a link into Rob's Instagram where you can see everything we talked about. He is quite prolific on Instagram and his wonderful wedding photos, the modeling, even the Medtronic signing announcement that I kind of teased him about there. It was great to talk to him and I hope it was okay that I talked so much. It was odd to be on the other side of the microphone, but it was fun to hopefully you enjoyed it as well.

We are going to have my favorite segment of the week coming up Tell me something good. But first Diabetes Connections is brought to you by Dexcom. It is so hard to believe with Benny 16 years old now, almost six feet tall that he was ever a toddler. And I mean it was also just like it was yesterday. It's bananas. When you have a toddler diagnosed with type one. You do hear rumblings for a long time about the teen years people start scaring you about that right away. But when it hit us at full force a little early, I was really glad we had Dexcom Benny's insulin needs started going way up around age 11 and along with the hormone swings all the growth, I cannot imagine managing diabetes without the dexcom continuous glucose monitoring system. We can react more quickly to highs and lows. see trends adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and his overall health. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more Just go to Diabetes connections.com and click on the Dexcom logo.

 

I got a bunch of Tell me something good submissions this week. So if you are not featured and you popped one into the Facebook group. Please stay tuned I will be sharing them in the weeks to come. Corinna posted a great article from Washington and New laws taking effect this year from Washington State caps the cost of insulin at $100 per month health plans issued or renewed after January 1 2021. Must cap Insulet co pays deductibles and other forms of cost sharing at $100 per 30 day supply. I'll link up that article and I do think we're gonna see more and more legislative action this year and next year when it comes to insulin so Corinna thanks for sharing that

and Corinna’s blog also got an honor. Recently, she writes type two musings, and she was featured in an article on everyday health about the top type two diabetes blogs to watch this year. So I'll link that up as well if you haven't checked her out. She's a longtime advocate and blogger in the diabetes community. Thanks for sharing that.

And just a little good news from Carol Who says I discovered the secret to five sites use six millimeter cannula instead of nine millimeter, whatever works. The thigh site is one that Benny has struggled with. He just does not like it. He's done it here and there over the years. And you know, it's just not his favorite. So Carol, I'm really glad that that worked. You know, we used a longer canula for a while and if you're not familiar for not a pumper. So the canula is how the pump gets the insulin infuses the insulin under the skin, you have usually an inserter of some kind, it puts a needle under the skin immediately withdraws and leaves a tiny canula six millimeter or nine millimeter under the skin where the insulin drips through when Benny was 10 or 11. And we kind of noticed his insulin use going way up. We didn't really think about the cannulas and the insets being overwhelmed. We thought well, maybe we just need to use a longer inset maybe it's a problem with scar tissue. And we switched to the nine millimeter for a couple of months. It made zero difference for him. It was one of the things that led us to untethered, which if you're new to the show, we used a combination of long acting and pumping for two years when Benny's insulin needs went way, way, way up. And it took a lot of the strain off the inset. It helped him measurably it was just wonderful. His insulin needs have gone down. He is 16. He is coming out of puberty. And so we are off untethered. But I didn't mean to be under there, Carol. Sorry. Thank you so much for sending that in.

And I'll add something good in that Benny has started back with wrestling practice. Now this season is going to nothing like any season in the past. I'm not sure they'll ever even actually wrestle for the rest of this school year. But we're back practicing. They are either indoors with masks, I think when they're outdoors, they're wearing masks depending on where they are and how close they are together. But he is really psyched to be back with the wrestling team and working hard. And he's really been working hard all this year. And I'm really proud of him. I don't like to say too much. I'm very superstitious. I'm knocking on wood even as I'm talking, which is why I don't brag about him more. But isn't that ridiculous, but I am superstitious, but he is doing well. And it's cool to have the wrestling practices back again. So that's my Tell me something good. Please feel free to email me with your good news or post in the Facebook group when I ask and just tell me something good.

 

One of the conversations we had in the Facebook group recently was about predictions for the new year. And I meant to give mine during the last episode, I want to put this on tape so you can laugh at me. We can play it back next year and see if I cut anything right. So here were my predictions. And this was about diabetes technology. I'll go big. I think we're gonna get Tandem bolus by phone approved that has been submitted according to investor calls, I think we're gonna get that approved and rolled out by third quarter of 2021. I think we're gonna get Dexcom g7 approval and rolled out by the third quarter of 2021 as well, that one I don't think has been submitted yet. So that one might be a little bit more hopeful. But come on. I do also think no direct to watch. Sorry, for g7 I still think you'd have to use a phone. But I do predict that the DIY crowd will find a way to crack it. And you'll be able to go direct from the g7 transmitter to a watch. That's very, very helpful. And it's also set up with zero knowledge about what it would take to do something like that. Love you guys. I have no idea. I think you're all geniuses. I think we're gonna get Omni pod five powered by horizon. Not until the fourth quarter. I think they're just a little bit behind only because I mean COVID delayed everything and my understanding is that have not submitted yet. Omni pod folks, you are more than welcome to come on the show. I'd love to get an update about that. Let me know. And I do think we'll also see another viable CGM competitor ready for submission to US FDA by the end of the year by the end of 2020. I think it will be submitted.

 

So those are my technology predictions. I think, as I've said, really, in this episode in many in the past, I think this is going to be a big year for conversation and education about insulin pricing, not just because the democrats are in charge in DC because let's face it, they didn't do anything last time around about insulin pricing, but I am very encouraged by the education and the advocacy. Frankly, the impatience among many people I'm seeing now, I think it is going to be different than last time around. Look, don't misunderstand my comment. Nobody said anything about insulin pricing for 30 years under any administration, it has nothing to do with party. It hasn't so far, maybe we'll see federal action. But I do think that the state legislators are going to make the big difference here. I refuse to make any personal predictions. I'm hoping that I continue to let Benny become more independent. I hope that he continues to put up with my digital list. Are you okay? Do you need to think Can I help you for at least a little while longer. He's a sophomore in high school. So I've got him here for a couple of more years.

And I predict that the podcast will stay a place for me to serve you. It is really a privilege to do this. I hope we continue to grow at the pace we are I love reaching more people. But bottom line, this is still the most rewarding project of my professional career. I've been in broadcasting a very long time, longer than I'd like to admit sometimes. And this is it. For me. This is the big deal and the one that has made just an enormous difference for me personally. So thanks for that. Got any predictions? We already have a thread going in Diabetes Connections the group I'll bump it up when this conversation goes live. Thank you, as always to my editor John Bukenas from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week.

 

Benny  56:25

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Dec 8, 2020

Benny sits down to talk about everything from which diabetes task he hates the most to what he loves about the diabetes community and much more. Stacey's son was diagnosed with type 1 in December of 2006, just before he turned two. This week he answers questions about Dexcom and pump site insertions and shares his excitement about turning 16 and (hopefully) getting his driver's license soon!

Check out Stacey's book: The World's Worst Diabetes Mom!

In Innovations, we talk about the new Hello Dexcom program

More info about Dexcom assistance programs here.

Listen to our episode with Stacey's whole family from 2016 here.

Watch Benny's first G6 insertion (May 2018) here - FYI he does it around the 8 min mark if you want to skip ahead!

 

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription:

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.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, 14 years ago this month, my son was diagnosed with Type One Diabetes. Benny joins me to answer a bunch of questions including how he psychs himself up for every inset and CGM change. He says, you gotta be fast.

 

Benny  0:41

Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed and if you like, leave the inset on your body. Like you're holding it there like, more and more you get in your head and like, this is terrifying. Why am I doing this?

 

Stacey Simms  0:54

Even now after all these years?

 

Benny  0:56

Oh, yeah, like if I don't do it in the first like, 10 seconds I have it on my body. I have to like take a minute.

 

Stacey Simms  1:01

He also shares what he remembers about moving to more independence. He was diagnosed before he was two. So it's been quite a change for us over the years. We also share what makes him nervous, what makes him happy, and a lot more

In innovations this week, a new program called Hello Dexcom may have more people trying this CGM. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I am always so glad to have you along. We aim to educate and inspire about diabetes by sharing stories of connection. As I have said my son was diagnosed before he turned two my husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and television news. And that is how you get the podcast.

I apologize right off the bat. My voice is a little rough this week. I have had some kind of lousy cold since Thanksgiving, I got checked for everything. COVID, strep, blah, blah, blah. It's just a regular old virus. And I don't feel that bad. But I probably don't sound that great. So I apologize for that. It really is hard to believe that 14 years have gone by. I remember that day like many of you do the diagnosis day, like it was yesterday. I've told a lot of stories about that day, I was working in radio, our lives were so different. My kids were so tiny. Some of you saw the photo I posted in the Facebook group of Benny and you many of you met him when he was tiny. And it's got to be jarring because I don't share photos of my kids all the time on social media to now see him looking so different. And he's 5’11. I mean, he's working out all the time. And we talked about that in the interview.

It's just amazing, right? You parents know you you hear your kids in the kitchen and you look up expecting to see you know, your seven year old daughter, and there's this 19 year old woman. What are you doing in my house? All the cliches about how quickly it all goes. But I'm always happy when Benny comes back on the show and answers questions that you submit questions that I have. It's amazing for me as his mom and it's become quite a time capsule. I think as we'll look back in years to come, and I hope it's helpful or maybe entertaining for you all. So we will get to that in just a moment.

But first Diabetes Connections is brought to you by One Drop and I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.

If you've listened to this show at all, you know my son Benny was diagnosed just before he turned two back in 2006. So that makes 14 years of type one in my house. We've done shows with him before In fact, when we marked one decade with type one, I interviewed my whole family. I will link that episode up if you'd like to go back and listen, I talked to my husband and my daughter and got the sibling perspective, which was really eye opening for me. And I talked to Benny, which four years ago he sounded quite different.

I have been told that Benny and I are kind of quick, we may talk in a bit of a shorthand when we're together. So listening to this interview, you should know just a couple of things. Geoffrey we mentioned is a diabetes camp counselor who is terrific. He's a great friend. We both love him, no matter what we say here. Sorry. Geoffrey. Benny mentioned some issues with his tandem pump. They are being wonderful about this. And by the time you listen, it's probably all resolved. But I will tell you a bit more about that after the interview, Benny and I get a little silly. I don't know if everybody appreciates that But enough of you have told me that it's okay to leave in. So I did. I did take out some really over the top ridiculousness, but I put that in at the very end of the show. So you can listen if you want to, like, Alright, we start off with Benny, rummaging around my office.

So I sent you into my closet to find a mic, pop filter. And what did you come out with? What is that?

 

Benny  5:21

It's a USB hub. And what does that do? basically turns one USB slot into three or four.

 

Stacey Simms  5:29

I remember buying that because I thought I would use it at conferences, but it didn't really work out that way.

 

Benny  5:34

Well, I mean, your computer has, I mean, I guess enough. Like it's not a one of the Mac's that have one USB, this would be very useful for that. I do not have one of those, but I will certainly find a use for it.

 

Stacey Simms  5:46

All right. So how are you?

 

Benny  5:48

I'm great.

How are you?

 

Stacey Simms  5:50

I'm great. Oh, my goodness. So as we are sitting here, this is 14 years of type 1 diabetes. Today, this is your actual diversity is today.

Benny

I’m such an old man

Stacey Simms

Today's the Saturday that we went down to the hospital in Charlotte. And then later that night, when I was freaking out, you put your arm around me and you said

Benny

it’s gonna be okay, mom,

Stacey Simms

you said it's gonna be okay, mommy. Yeah, that was tonight.

 

Benny  6:12

I'm an old man. I'm so old. That's wild. I don’t remember any of that.

 

Stacey Simms  6:15

What's interesting, too, is we started your Dexcom on Christmas Day. 2013. So you had just turned nine? Yeah, or you were about to turn nine. And that's we started your Dexcom you must remember that.

 

Benny  6:33

And we were at grandma's house in the big screen room,

 

Unknown Speaker  6:36

right? Like that movie theater room.

 

Benny  6:38

And you were both with me. I was like, freaking out. And dad was just like, Alright, we're doing it wrong. And I was like, that was terrifying. Let's never do that. Again.

 

Stacey Simms  6:49

That was the old I was gonna say G5. But it was the G4. It was a G4 flat. No, it was a G4 pediatric which had the same inserter as the G5. What I wanted to ask you about was. Stop. You are impossible we need to do this on video one day. See, you've been doing that, trying to like eat the mic three years old, gross, fine. Well, you couldn't find any pop filters, because every time I talk to you I have to  get a new one.

So I figured you don't have a lot of like reflections with diabetes. we've, we've asked you some of these questions before

 

Benny  7:29

and I'm not the best at answering them.

 

Stacey Simms  7:30

Not quite a I'm not the most reflective person a meditative Sage if that's the right way of putting it. But you do have a lot of good things and wisdom to share. So I thought we'd take a different tack this time. Okay. All right. So here are some dumb questions.

 

Unknown Speaker  7:45

We love them.

 

Stacey Simms  7:46

And you have done your own will say, you have done your own pumping sets and Dexcom insertions I'm gonna say 2 to 3 years now I've kind of lost track, but it's been a long time. I can't remember the last time I did one with you. Which is worse, pumping set or Dexcom

 

Benny  8:02

Oh pump? For sure. Why? Tell me about it. Because the Dexcom is a little before the G5 and G for pediatric were terrifying. Yeah, they were like giant syringes and like you could feel the needle go in and like all you could feel it move the entire time.

 

Stacey Simms  8:17

Do you remember? That definitely let you finish the actual question. But do you remember the first time Geoffrey tried to get you to yesterday or so?

 

Benny  8:25

Are we friends for life?

 

Stacey Simms  8:26

We were at I think a Jdrf conference. It might have been a friend for life conference. But I think it was local. Because Geoffrey was there from our

 

Benny  8:34

local. Yeah, we were in the hallway outside the conference room. And he was like you either do it yourself or it's not happening. And that's actually how he made me do my first inset too. But that was that camp. Thank you, Geoffrey. You have traumatized me. He said the way he did it was just push up against the wall. And then like with the white part to go in, and then the clear part. he'd pull it up by himself. And I'm like, that's not how I would do that. And I was I was utterly terrified. I just remember walking up. Oh, you had I had it on my arm, right? And it was like the whole thing was stuck on my arm. And I was just like running around because I will I'm not doing this.

 

Stacey Simms  9:07

Yeah. If you're not familiar with how the G5 used to work, or the old Dexcoms you'd have to, it just looked like almost like a giant syringe a surrender, right? So you'd push down on one part and then pull up on one part. I'll put a video link in the show notes. So you can check that out. But it's very hard to do by yourself. So people got very innovative and use door jams. And well

 

Benny  9:26

I actually did it by myself. I mean, I got to the point where I could you just got to stretch your fingers.

 

Stacey Simms  9:32

But also you couldn't really do in your arm by yourself.

 

Benny  9:34

I couldn't I got to the point. Yeah,

 

excuse me. Um, it was just really fast because I'm so like most people like did it kind of slowly and then like pull it up pretty fast. But like I did it like all in one smooth motion so that I could actually do it with one hand on my arm. No, because I'm just that I don't

 

Stacey Simms  9:51

remember. I think when Geoffrey did it that day though. We wound up just removing it. Yeah, we just took it off because it was your conference with it sticking out of your arm.

 

Unknown Speaker  9:59

I mean Sorry to laugh.

 

Stacey Simms  10:00

I was like, You were scared. I was terrified. There's so much that you guys have to go through. That is so scary and not fun.

 

Unknown Speaker  10:07

So Geoffrey bullies me. All right.

 

Unknown Speaker  10:08

I love you, Geoffrey.

 

Stacey Simms  10:11

You said the inset hurts more now.

 

Benny  10:12

Yeah.

 

Stacey Simms  10:13

So how do you Wow Tell me about your procedure. Oh, you do it?

 

Benny  10:16

Well, the Dexcom. But let me get back to that. Now it's just a button. And it's not scary at all. Like you don't see the needle. You don't see anything but the bandage sticky part and the big orange button. It looks kid friendly. Like it doesn't look like it's gonna stab you. It's just a button. But the the inset like you can see everything. You have to like a bit. You're basically looking at the needle the entire time while you're unwrapping it. And let me just say that the inserts are way harder, way harder to unwrap than the decks comes. Someone should get on that. I'm with you. And like the spring mechanism, like you have to like pinch down on both sides. That's like, I just adds the aspect of like you are stabbing yourself.

 

Stacey Simms  10:59

Well, it's interesting, because you know, you have done more shots than people. Most people who use a pump will have done well. I don't remember any of them. You just did. You stopped in March. Oh,

 

Unknown Speaker  11:09

wait,

 

Stacey Simms  11:10

did that Tresiba. Oh, that you see.

 

Unknown Speaker  11:13

Let me rephrase.

 

Benny  11:14

When I think of shots, I think of like the the one with the orange test

 

Stacey Simms  11:17

syringe shots like the old Oh, yeah, that's true, because you were two and a half when we stopped that. Okay. But what I mean is, here's my question. As a person with diabetes, who has sharp objects in you quite often, it must be so strange to have to insert them and as you're saying, You're watching the needle the whole time you're wrapping the inset unwrapping the inset, and then you put it on your body. Isn't your body kind of telling you like not a good idea?

 

Benny  11:41

Yeah, no, I mean, absolutely. Like, it's kind of like sports. Like if you don't do it at that moment. Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed. And if you like, leave the inset on your body. Like you're holding it there. Like Like, more and more you get in your head and like, this is terrifying. Why am

 

Stacey Simms  11:58

I doing this? Even now after all these years? Oh, yeah,

 

Benny  12:01

like if I don't do it in the first like, 10 seconds. I have it on my body. I have to like take a minute.

 

Stacey Simms  12:07

That just makes sense to me. Because your body is never going to say yes to a needle. It's always going to want to send your body's not down.

 

Benny  12:15

This is not a good idea. crazy person.

 

Stacey Simms  12:18

Does the coughing still help?

 

Benny  12:19

Oh yeah, I do it every time. I don't know if I would need to anymore, but I still do it every time

 

Stacey Simms  12:26

and we should explain when you cough apparently you kind of confuse your body for minor pain.

 

Benny  12:31

I think it just distracting. Like I think if you like the whatever it is like the nerves receptor pain, whatever. Just focus on your lungs for like, a quarter of a second. And that's when the needles going in your body.

 

Stacey Simms  12:43

So can you now cough and stay still? Like that's the one thing that makes me nervous when I hear you coughing it's like picture you moving and then the needle getting

 

Benny  12:49

I never moved that much. It's like a little flinch. Like if your cough right now it's not like you're not gonna move six feet. We need a camera

 

Unknown Speaker  12:58

camera. He just like jumped off his chair. Maybe another time.

 

Stacey Simms  13:07

Right back to our chat in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar, Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with a pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.

 

People ask me a lot. How did I get you to do your own insets and Dexcom stuff? And I don't really think we had a method. Yeah,

 

Benny  14:00

I don't. I think eventually it was like, I think it was a mix of us saying like, I think we should start doing this and me being like, I should start doing this. It wasn't like one of us was like this needs to change. It was both of us kind of like we can't if we want to

 

Stacey Simms  14:14

I seem to remember in fifth grade your inset coming out once and me saying you're fine. Do it yourself.

 

Benny  14:21

I don't remember that.

 

Stacey Simms  14:22

Well, I'm glad because I felt kind of mean at the time. But me but you did it and you were really excited about it. And I think it's also as you got more independent. You didn't need me or want me hovering over Yeah. No, but you don't mean like when you used to go to Birkdale with your friends, and we would go places and do things. You know, like in seventh grade, you'd go to Burke does our local shopping center and you wouldn't if your insect came out or had an issue with like, you didn't want your mommy coming to your rescue. Well, I would have been happy to I know. But I think that helps too. So what It's a tough answer, though, because there really isn't an answer is how you did it.

 

Benny  15:03

Yeah, it's kind of just um, and kind of just happened.

 

Stacey Simms  15:07

I think the G6 made that easy too, because you had been doing the G5 as you said by yourself. But when I forgot we were on the G6.

 

Benny  15:13

How did you pretty me forgot? Like I forgot. I thought it was like, I

 

Stacey Simms  15:17

don't know. Am I keeping you awake? I'm tired. You are beat tonight. workout? Yeah, well, we're gonna talk about that too. But when we switch to the G6, and there's that crazy video of you getting all geared up to do it in May of 2018. We got the G6 and you and I did a live Facebook, where you inserted for the first time was that on the couch? I think I remember that was the kitchen table in the old house.

 

Unknown Speaker  15:38

Oh, I do remember that.

 

Stacey Simms  15:40

And that after that you I mean, you did that one yourself. And then it was easy. So I never did it again. I mean, I never did the G6 period ever fancy. Yeah. Well, it's weird. After having done everything for you for so long.

 

Benny  15:52

It just tell us. You said you can't do it anymore. You said you can stab your son anymore.

 

Unknown Speaker  15:57

Oh my god. Hey,

 

Benny  15:59

tell me. So

 

Stacey Simms  16:00

tell me about working out. So you your wrestling practice is sort of back pain. And you've been outside today. So much fun.

 

Benny  16:08

Working out in masks outside in 50 degree weather is the best thing I've ever experienced.

 

Stacey Simms  16:14

What happens when you work out with diabetes? Because you work out a couple of times a week outside of wrestling too. I know, to me, you kind of act very casual about it. But what do you take into account? Like, how do you do that?

 

Benny  16:25

I'm very casual about it. Yeah, I pretty much just go into workouts. Like, if I'm above 120, and I bring food. And if I go below 120 I eat food. And then wait till I'm above 120 and then go back in. That's pretty much it.

 

Stacey Simms  16:42

That's that's super casual. I mean, at least you pay attention and you know, do what you need to do.

 

Benny  16:46

That's pretty casual. You see, I think you're replacing the word casual with lazy. Lazy would be like I'm 90. Let's do this.

 

Stacey Simms  16:55

Oh, I don't I don't know. I mean, you want to have an actual workout for the time that you're there. So you take care of what you need to take care of.

 

Benny  17:01

Yeah, because if you didn't, then you die. Well, don't worry, or it's a waste of time come in energy.

 

Stacey Simms  17:06

Yeah. So here's another question for you. I'm curious though. after your workout. You know, occasionally that pump doesn't get put back on

 

Benny  17:14

will because I go to the shower and shower last like shower for like two to three hours. Look, hot water and music. Very nice. Okay.  Shout out to Tandem. Control IQ is very well, sometimes. You know, we're having some problems.

 

Stacey Simms  17:37

Yeah, well, we're just having some problems with Control IQ. We think the transmitter and the pump are not getting along right now. Each of the last four weeks have been ridiculous. We've gotten really used to control IQ.

 

Benny  17:46

It's great. It's really nice when it works.

 

Stacey Simms  17:48

Yeah. What is the diabetes chore that is the biggest pain for you.

 

Benny  17:54

Oh, filling a cartridge

that definitely filling a cartridge just

 

Unknown Speaker  17:56

because I said that for No, no, no.

 

Benny  17:58

It's definitely filling a cartridge pain in the Can I say a bad word? No? pain in the butt. Why? Because look, it's just annoying. Yeah, I have like 10 units less. Like at night. I have like 10 units left. And I'm like, Huh, I know, I have to go all the way downstairs and fill a cartridge. Right? You're all cozy in bed. Yeah. Like I'm about to go to sleep and I get I hear the stupid Animas alarm. But

 

Unknown Speaker  18:24

that's not the Animas alarm. You're First of all, whatever. You haven't had an Animas phone for four years.

 

Benny  18:30

Did I say Animas? Oh,

 

Stacey Simms  18:31

do you remember the Animas alarm?

 

Unknown Speaker  18:33

It was um, Beethoven?

 

Stacey Simms  18:35

Yeah. Because I can't. I can't hear Fur Elise without like.

 

Benny  18:41

But there was just like that very part. It didn't go on. It was like, Dude,

 

Unknown Speaker  18:46

that was it. Maybe they couldn't get the rights.

 

Benny  18:47

They? How did they How were they legally allowed to use that?

 

Stacey Simms  18:52

I think it's public domain. Is it? I think I think most classical music is Yes. Really? Yeah. You are not doing untethered anymore. We referred to that earlier. That's when you took about 50% of your basal from Tresiba long acting shot, and 50% from the pump with control IQ and with your body mind changing, right. But we didn't need to really do that. What did you think of that? Was it worth it?

 

Benny  19:14

I think at the time, it was very nice, because it significantly decreased the amount of times I had to change my cartridge. And that was really one of the main reasons we did it. And did it work like a charm. It did.

 

Stacey Simms  19:27

And it was also about changing that inset. Yeah,

 

Benny  19:30

well, that's different perhaps.

 

Stacey Simms  19:32

Well, no, I mean, I'm not talking about nagging you to change your inset, which I still do, apparently need to know. But I mean, we thought that there was something wrong with the inset somewhere. I don't know if you remember this. We tried different needle lengths. We tried different types. Right. We went to the longer needle and was just overloaded. It turns out by the amount of insulin we were trying to push through. So once we took half of the insulin away from the inset, it amazingly worked much better. Would you recommend untether You know, for a teen or somebody like I would

 

Benny  20:02

recommend it for someone that is using more than half their cartridge today will no more than a quarter of their cartridge a day and is a teenager if you're an adult?

 

Stacey Simms  20:12

Hmm. Why? Why do you think adults wouldn't do? Well?

 

Benny  20:15

I don't know. Like, it just feels like something that like, you know, teenagers have that like a hormonal imbalance. And I feel like it's just significantly easier to control it with a untethered,

 

Stacey Simms  20:27

I just felt bad. I'll be honestly I felt bad that you had to take an additional shot every day. Well, no,

 

Benny  20:31

I mean, I took that into like account mentally. Like I was like, I mean, is it worth it? And I was like, absolutely. It really was. I think that's one of the main things you should consider if you're looking into untethered. Like do you want to do another shot every day? And can you remember cuz I forgot sometimes. Yeah. But Tresiba is really forgiving? Tresiba is extremely forgiving.

 

Stacey Simms  20:49

Yeah. But it was amazing. The results were amazing. Not just with the cartridge changes, but with your agency and time and range, all that good stuff. Okay. So if it's a big if, if all goes well, you will be traveling to Israel, Summer of 2021 for four to four or five weeks.

 

Benny  21:05

Without anyone in my family.

 

Stacey Simms  21:07

Yes. But with camp with a camp group. What are your thoughts about diabetes? Are you nervous? Are you

 

Benny  21:14

a little nervous that I might run out of insets? Oh, and maybe insulin? I mean, I'm sure I won't, I'm sure we'll have an excess. I don't know, like being in a foreign, like, couple thousand miles away for the first time plus diabetes is? I mean, it's a little scary, like, truthfully, it's a little scary. But I mean, I think the fun and the the excitement significantly outweighs

 

Stacey Simms  21:41

I think you're very smart to worry about those things. Because unfortunately, you have to think about I think the most

 

Benny  21:46

thing, the thing I'm most worried about is my Dexcom not wanting to work. Oh, yeah. at Camp Carolina trails may rest in peace. The last year I was there, the second my phone was away from me, my Dexcom just did not connect to my pump once that entire week. And I really do not want that to happen.

 

Stacey Simms  22:06

Yeah, I remember that. That was um, that was 2018 2017, something like that. And we tried the Liebe re right, because I was kind of a backup plan. And then you were like, I'm just a diabetes camp. Forget it. And you did finger sticks all week. But that would not be fun.

 

Benny  22:17

Well, as I've made it abundantly clear. I think they give they their own you too much?

 

Stacey Simms  22:25

Well, they're ensuring your safety. Not everyone is is casual. But here's my here's

 

Benny  22:29

my thing. Here's my thing, right? If you have a Dexcom and someone like someone, a parental Guardian, gives it the Okay, why should you have to do a finger stick?

 

Stacey Simms  22:39

Well, because there are probably medical guidelines that they must go through, because they're not your parent that makes no sense. What if the parent

 

Benny  22:47

or guardian signs a waiver that says you can go completely off Dexcom?

 

Stacey Simms  22:51

Like, why would that not everybody does as well with the Dexcom as you do,

 

Benny  22:55

so that's why it's an that's why it should be an option to sign off to allow the parent or guardian to allow him I'm just so

 

Stacey Simms  23:01

happy someone will will take you that. I don't I don't sign anything special. I just say Will you put up with him? Here? Here? Take No no, no, no.

 

Benny  23:09

It's me putting up with them. Okay, it's very different. All right. Oh, my God. Look, I love the people there. But your policies I disagree with? I'm sorry. They're

 

Stacey Simms  23:18

shocked those the people that we know that are listening. Benny's never said anything like this to us. We've never heard him complain about anything. What a shocker.

You were Rufus. That was so much fun when we used to actually get together in person Tell me why it was fine. I

 

Benny  23:33

love that like the Okay, so, one, there was one day where I was walking down the halls and the second was with all the kids in there like, like the in the place where the parents sent them way to stuff dealing with them.

 

Stacey Simms  23:46

Like the child care theory.

 

Benny  23:47

That's what it's called. I see. I don't know, because I never got sent there because I refused. But like, those kids loved me. And it was it was so much fun. Like I really don't know how to explain it

 

Unknown Speaker  23:58

to me cuz you didn't have any training. Really? You've never been a mascot before the run in Davidson.

 

Benny  24:04

Oh, the JDRF Well, yeah, that was a lot of fun to do. The one the one with the kids though, was definitely the most fun. Like they just like their eyes lit up. They're like, Oh my God is this Oh my god. Oh

 

Unknown Speaker  24:14

my god, guys, look. Oh

 

Benny  24:15

my god. And you're in there and you're hot. And you're Oh my god, I'm so hot and disgusting in there. And I'm like, I'm like in this giant bear costume that all these little kids are hugging like a third of my leg. And I'm like, and I'm like dying inside. like half the time. I'm like genuinely smiling and the cat the other half the time I'm like dying on the inside because of how hot I am.

 

Unknown Speaker  24:34

But it was fun.

 

Benny  24:35

Oh my god, I do it 100 times. It was so much fun.

 

Stacey Simms  24:37

That's great. If you were to talk to those little kids outside of the room costume we don't want to scare them. Anything you would tell them about diabetes any Did anybody ever seen that helped you like anything that you'd like? Oh,

 

Benny  24:53

it's like I've said like 100 bajillion times and like I just said, Do what you want to do and don't let the stinking diabetes stop you. It shouldn't be something that stops you.

 

Stacey Simms  25:03

Alright, so I'm gonna I'm gonna make it more difficult because diabetes can definitely stop you, right? diabetes slows things down. Dude, how many times have we had to like change an incident a bit when I say stop? I

 

Benny  25:15

mean, like, like for a week, like you're just I don't want to do anything?

 

Stacey Simms  25:20

Well, I think it's important to talk about that because some people here don't stop and they think like, anything that goes wrong is a bad thing. And it's their fault, and they feel bad about it. And that's not what exactly what you mean.

 

Benny  25:31

Yeah, no, if something goes wrong with diabetes, the first thing you should think is it is not your fault. You did everything you could, something went wrong. Now, pick yourself out, figure out what went wrong, and try and fix it. And if it doesn't work, you track up someone else to help you.

 

Unknown Speaker  25:50

And you sounds like the Waterboy.

 

Unknown Speaker  25:55

That's some high quality h2o.

 

Stacey Simms  25:59

All right, you are almost 16

 

Benny  26:02

so excited.

 

Stacey Simms  26:03

Let's talk about driving. I know that you think you've got it all in the bag. Absolutely

 

Benny  26:07

have it in the bag. I'm

 

Stacey Simms  26:09

the best driver this oh my god knock wood. I'm gonna swing a dead chicken over my head. And say a Kenohora the bad luck you just brought on yourself.

 

Benny  26:15

Don't do that English. I don't think a word you said there was English.

 

Stacey Simms  26:20

Just you know, take it easy. Take it easy, my son. It's a big milestone in anybody's life. But certainly for people with diabetes. I mean, we've gone over our like little protocol. And oh, here's a question for you. It's kind of about driving. So this is the first time I remember in your diabetes life where you've said, just give me the glucose tabs.

 

Benny  26:41

What's up with that? Well, I never liked the flavor of glucose tabs. I always thought they were kind of gross. But you have to take into account the convenience of them, they won't burst like I've had a lot with juice boxes gone, they won't melt, like gummies if I don't touch them for three weeks in a compartment in the car. And they really don't

 

Unknown Speaker  27:01

taste that bad.

 

Benny  27:03

So when it comes down to it, I'd much rather have something that I can I know will be there when I need it. Then something that tastes better.

 

Stacey Simms  27:10

very mature.

 

Unknown Speaker  27:11

I know I'm so awesome.

 

Benny  27:14

Give me a card

 

Unknown Speaker  27:15

that you get your car. I got you a whole thing of glucose tabs,

 

Unknown Speaker  27:19

like the big ones. Yeah.

 

Stacey Simms  27:20

compartment already. That's

 

Benny  27:21

great.

 

Unknown Speaker  27:23

Orange,

 

Benny  27:23

orange, you glad I didn't say banana?

 

Stacey Simms  27:28

Sorry, I think we're good. What else? Should we What should we end on here?

 

Benny  27:30

What's it like? hearing other moms experiences with their kids with diabetes compared to your experience with me?

 

Stacey Simms  27:38

Oh, my gosh, it can be very difficult. Because I think I'll be honest with you, I think a lot of moms do a, quote, better job of managing their kids diabetes. And I have some guilt that I've given you so much independence, and that I haven't. No, no. juries not here yet.

 

Benny  27:59

The jury is definitely.

 

Stacey Simms  28:00

But I have some guilt that I haven't done as much as maybe I could have over the years. And I know that world's worst diabetes thing is a joke. But it's sort of kind of not sometimes. But on the other hand, I look at you. And I feel like while you may not be a perfect person with diabetes, you are not afraid of it, you respect it, you take care of it, but you're not afraid of it. And you don't feel You don't seem to feel guilt about it and you don't seem to be negative about it. You've never given up an opportunity because of it. And that to me means I'm doing okay. As you know, I talk to a lot of moms, especially in the Charlotte area with this this group that we have, and they're on the shortlist. It's it's a Charlotte parents. We have some dads, also moms, but it's it's a good question. Because I don't think um, and I think with with all parenting with your sister, too, I think that you know, there's no finish line. So I always feel like we could do better, we could do worse. But you know, if you guys are healthy and happy, then I feel okay. But it's a good question, because it's a really difficult one.

 

Benny  29:06

Well, thank you for coming to my podcast. We'll love to have you in about two weeks.

 

Stacey Simms  29:10

All right. Another one another question for you them. Ah, all right. We said how much we left control IQ stop. He said how much we love to control IQ. And I don't even know if you know what's coming down the horizon if I've kept you posted on the thing. What are you looking forward to in diabetes technology in the future?

 

Benny  29:25

The 80% thing?

 

Stacey Simms  29:27

Oh, and the next edition of the control IQ that will bolus you more robustly.

 

Benny  29:31

Yeah. Because while it works great, it is still not aggressive enough for me because I tend to rely on it a little bit more than I should.

 

Stacey Simms  29:39

Well, you, you know it would be really nice not to have to bolus for every meal. I think it'd be

 

Benny  29:43

really cool if they could find out a way to know exactly what and when I am eating. Well, there are some elders that thing that like senses when like you told me about the senses when you're moving your hand like

 

Stacey Simms  29:56

you know, there are some algorithms that are You're just gonna have to tell it you're having a small, medium or large meal, and it should be able to do all the work for you.

 

Benny  30:05

I feel like that's gonna that's too big of an umbrella of food. Because like if I'm having a small meal that could be like a bar, or it could be like a bunch of fruit. That's true. I feel like small, medium and large is too big umbrella. Well, it is. That would be a great first step, but definitely ensure my direction.

 

Stacey Simms  30:23

All right, so you're looking forward to more bolus power.

 

Benny  30:25

Yeah. All right. Two more automated bolus power.

 

Stacey Simms  30:28

Yes. I like that. I'm looking forward to that, too. I'm also looking for better insets As always, because we know those are the weak link of pumping. And I'm also really excited about the smaller cgms that are coming the deck.

 

Benny  30:40

I can't wait for the Tandem. The Tsport Oh, yeah.

 

Unknown Speaker  30:44

What is that supposed to come out?

 

Stacey Simms  30:45

COVID has knocked everything down. But probably something's coming

 

Benny  30:48

to a store near you in 2022.

 

Stacey Simms  30:51

My guess I mean, it's a guess is late 21. And that'll be fun to try because it will also allow you to try new sites.

 

Unknown Speaker  31:01

That's really funny.

 

Stacey Simms  31:02

all right, Benny, thank you so much. Happy diversity.

 

Unknown Speaker  31:05

Happy Hanukkah.

 

Stacey Simms  31:06

I want to give a gift to you. When this airs. It's gonna be an Hanukkah. Say goodbye, like people on your age on YouTube.

 

Benny  31:14

Don't forget to like and subscribe and share and comment down and make sure to check out my merchant the description below.

 

Unknown Speaker  31:19

There you go. Perfect. Bye fam fam.

 

Unknown Speaker  31:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  31:33

So I have to say, in between a lot of the silliness, I was really excited to have Benny's answers. We really, he told me a lot, I hope you got a lot out of that as well. And again, at the very end of the show, a couple of I guess you could call them bloopers, although it's just us being ridiculous and silly, if you want to hear that. So that's at the very, very end of the show.

I also wanted to mention the issue that he alluded to there with his Tandem pump, you probably are aware, he uses a tandem t slim X to pump with the G6 from Dexcom. And the whole system together with the control IQ software. We've had that since January of this year. And it really does work like a dream. It's a long story. But I'll try to keep it short here. And the basic problem is that the pump and Dexcom are not communicating as they have been for years and years. So it's really become a problem because the follow app and the Dexcom app are working fine. But the control IQ cannot work when it's not getting a signal from the Dexcom. So we've been troubleshooting this with Tandem for a couple of weeks now. They've been really helpful, but it's just taken longer than it might have. I don't know how to quite put this when I was more in charge. Because Benny is great. But he doesn't tell me right away. So when we troubleshoot and things are fixed, I think they're fixed. And then when I check in with him, oh, no, they're not fixed. So I really had to sit on him for this. And Tandem has been great with customer service. And I think we're almost to the end of fixing it. I'll keep you posted.

I think the only other thing from the interview I might need to explain is that he said something about camp Carolina trails is over, you know, the diabetes camp where he went, basically it was just kind of a change of camp in our area of the ADA had American Diabetes Association had run his diabetes camp like it does so many for many years. But things changed a couple of years ago. And now we have a local group that runs the camp. And it's pretty amazing to have that. They're really cool people and we'll have them on again, I'm sure to talk about all the good stuff that they've done because they do a lot more than camp. It's the diabetes, family connection. They have great Instagram accounts, some other stuff, but very cool people, we're really lucky to have them in this area, and they took over the camp and have done a great job despite what Ben he says he's such a complainer about that stuff.

All right, I want to tell you about our innovations segment in just a new program from Dexcom and Diabetes Connections is brought to you by Dexcom. As I said, we've been using the Dexcom G6 since it came out. It really is amazing. It is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. I know it sounds silly to a lot of you who are newer to CGM, that's amazing. It really is wild. to not have to calibrate we have been using Dexcom for seven years and it just keeps getting better. The G6 has longer sensor wear and the new sensor applicator as Benny said it's so easy to use. We still love the alerts and alarms and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Innovations this week a new program from Dexcom. And of course when I talk about them or talk to them I always like to disclose as you've just heard, I just did a commercial for Dexcom and they do pay me to talk about them in the commercials of this podcast, but what you're about to hear is not part of the endorsement, they did not pay me or give me anything to talk about this. I think it's interesting. And I'd love to know your take on it as well.

This is a program called Hello Dexcom. And it is a new sample program. So what's gonna happen here is that people are going to be able to try a G6 system at no cost. They basically get it at their doctor's offices, it says - and I'll link this up in the Facebook group as well and in the show notes on the episode homepage - but it says whether provided to a newly diagnosed patient to get them started on CGM right away, or a CGM naive patient who wants the opportunity to try the device before committing to a personal system. The Hello Dexcom sampling kit allows people with diabetes to experience the life changing power of CGM, they get the transmitter the sensor and access to a digital experience. They call this a 10 day digital empowerment journey to ensure they get the most out of the experience and understand if CGM is right for their personal diabetes management.

Now, I of course had lots of questions. Look, we've said a million times CGM is going to be standard of care. There are 39 CGM systems in development, who knows how many are actually going to come to market in the United States or in other countries, but this is going to be standard of care for people with diabetes. So more people getting on CGM might be a great thing. I don't know, I am always concerned about education. I see it all the time. And I've you've heard me tell this to Dexcom. And to pump companies until the break, people get this stuff on their body, they go home, they don't know how to use it properly. They don't know how to use it to its utmost. They don't know how to use it so that it helps them thrive rather than holding them back. We just need more education. Obviously, this is a soapbox issue for me.

So I asked, and I'm gonna take you through the QA that I did with Dexcom. So this was an email back and forth. I'm going to read you my questions and their answers. If you prefer to read. Look, every episode this year has a transcript. So this will be in the transcript if you prefer to read it. I know especially with my scratchy voice, it might be kind of hard to listen to. It doesn't matter to me, if you want to read if you want to listen, that's going to be the next two to three minutes of the show.

So here's what I asked, Does the patient get the sensor and transmitter with no commitment or insurance coverage? They said yeah, since Hello Dexcom is a sampling program. It's available at the doctor's office comes at no cost to the patient. So I said since the transmitter lasts 90 days, what happens at the end of the 10 day trial period? Does the patient choose to continue on with the same transmitter? Or do they just throw it away? They said at the end of the 10 day sampling period. If the person chooses to stay on Dexcom they will be able to use that transmitter until it needs to be replaced. I'd like to know more I wrote about the digital empowerment journey. What is that videos personalized instructions. The digital journey they wrote is a 10 day email series that walks the user through how to make the most of the GS six. Once a user receives the Hello Dexcom kit. they'll receive instructions on how to set up their online digital journey. They go on to say they'll get the dexcom clarity app they'll share that with the physician once the sample period has ended. There are checkins in the form of email, which share more information they can get custom alerts and allow others to follow through Dexcom follow.

who is the daily check in with I wrote the patient's doctor a Dexcom employee? If it is the latter, is it tech support or a diabetes educator? emails are sent to the patient every other day, they wrote as part of the empowerment journey. But users will also have access to customer support to assist throughout the process. At the end of the sampling program, users will meet with their physician to discuss their experience and review their clarity results.

And finally, I wrote this might be an unpopular question. But I know my listeners will want to know if Dexcom can afford to give away this many sensors and transmitters. Why not lower the price for existing customers? Here's their response. A lot goes into creating this technology. It takes years to develop, study and gain approval. And then of course you have to market it raise awareness and encourage people to use it. The Hello Dexcom sampling program is part of that effort to raise awareness and adoption of Dexcom CGM to help people control their diabetes. They went on to give me some information about coverage. I'm going to link up if anybody does need help paying for their Dexcom. Or if you need information about Medicare and Medicaid, I will link that up as well.

But I think these are questions that need to be asked because from a sales point of view, this is a home run program, right for Dexcom. You go to your doctor, I'm not sure if I want to use a CGM. They have the professional ones they could put on you where you don't see it. These have been around for years and years. They put a CGM on you. But you don't look at the information. The doctor gets it and uses it to help with care. Or maybe it's a way to test out the CGM. But this is a much better way to test out a CGM, right when you get to keep the transmitter when you're done. So this is a really cool program. But I could also see some confusion because we know enough people who get educated by educators right they they meet with the CDE they Meet with a Dexcom trainer. And then three days later, they're in my group saying what happens? Why do I have down arrows? What does it mean? If I have signal loss? Where can I put this on my body and all the things you've seen in all the groups you're in? So I do think that we need so much more education.

But this is a really interesting program. What do you think? Hello, Dexcom? Is that something that your doctor has talked to you about? It's brand new in December, but by the time this episode comes out, it'll be out for a little while, love to hear your thoughts on that. And again, I will link up more information in the show notes.

As we come into the homestretch of 2020. I know most of you cannot wait for this year to be over. But I have a feeling there's gonna be a few interesting technology drops before the end of the year. That always happens in late December. So I am braced for it, which means probably won't happen this year, because I'm ready. But I do have some great interviews lined up, we are going to be heavy on technology in 2021, I have decided, it's what I'm really interested in what you're really interested in. Of course, we're going to tell the great stories from our community. And we're going to keep talking about access and affordability. But I am very excited to talk to new pump companies to talk to new CGM companies to check in with our friends and find out what's happening at companies like Tandem and Ypsomed, and Medtronic and all the stuff that's coming out in the next year or two. So we're gonna be heavy on technology. Let me know what you want to hear. If you work for one of these companies. Come on, reach out, we'd love to hear from you. listeners to this podcast are smart and savvy. And if you let them, they can help you. They're fantastic for focus groups and studies and they really get it so I didn't expect to make a pitch that way. But if you have a pump CGM technology diabetes company, email me Stacey at Diabetes connections.com we can definitely get you the ear of people that are hungry for information, want to hear from you and want to help you because we don't want you to make advances or what you think are advances. We don't want you to move ahead. Without us. We want our input to help make your products better.

 

Stacey Simms  42:03

thank you as always to my editor John Buckenas from audio editing solutions. Thank you, not only for listening, but for being there. I mean, I'm not just an announcer in this community, right. I'm a mom, you heard my kid. You know, we need you. We need each other. I'm honored a privilege to serve this community. And I'm also so grateful to be part of it. So thanks for always being there. For me. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  42:34

Diabetes Connections, is it production of Stacey Simms media? All rights reserved. All wrongs avenged?

 

It's like I've said like 100 bajillion times. And like I just said, What?

 

Unknown Speaker  42:54

Making a face that you just say it?

 

Unknown Speaker  42:56

Am I not allowed to go?

 

Stacey Simms  42:57

Fine. Take your time.

 

Unknown Speaker  42:58

I'll take a sip of tea.

 

Benny  43:01

That's That's her taking a sip tea. You're gonna laugh You are laughing. Tea. Yummy. Here's the tea.

 

Unknown Speaker  43:20

Oh my god.

 

Benny  43:21

I think you should not edit this at all. That's

 

Unknown Speaker  43:23

gonna go at the end. Oh, that laughing

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