Diabetes Connections | 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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Now displaying: September, 2020
Sep 29, 2020

There's new help for doctors who want to treat the person with diabetes and not feel overwhelmed with data. The people at DreaMed Diabetes are behind the brains of the Medtronic 780G system, but they're hoping to help thousands of people who may never use an insulin pump by making diabetes data a lot easier for doctors to use. This week, CEO and Founder Eran Atlas explains their Advisor Pro system to Stacey.

Study in Nature Medicine about DreaMed Diabetes 

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In TMSG a big award for a doctor you all may know better as an Amazing Racer and I learn the word Soccerista.

Read about Emerson in her own words here 

In Innovations – women and diabetes tech design. Read the DiabetesMine Article here

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Episode Transcription (beta transcription - computer only)

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 premix autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.


Announcer  0:23

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:28

This week, there is so much data when it comes to diabetes that even your doctor would like an easier way to interpret numbers and make dosing recommendations. A new first of its kind technology called DreaMed may help


Eran Atlas  0:43

with the use of your system. I can stop being a technician I can learn to being a mathematical or an engineer, I learned how to be a physician and I wanted to continue to go and practice medicine. I don't want to go and practice engineering.


Stacey Simms  0:55

That's DreaMed co founder and CEO Eran Atlas, talking about the reaction he's getting from people who use their system will explain what it's all about and how it could help

in Tell me something good. A big award for a doctor you all may know better as an amazing racer, and I learned the word soccerista.

innovations. Let's talk about women and diabetes tech design.

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

Welcome to another week of Diabetes Connections. I'm so glad to have you along. I'm your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, as well as stories of technology. And that's what I'm talking about this week.

And I went into this episode, I gotta tell you sort of thinking it would be one thing, because I know many of you are very familiar with the technology and these companies. DreaMed is behind the algorithm that's inside the Medtronic 780 G, which was just approved in the US. And we actually are talking to Medtronic and our very next episode about that many other things. But the agreement with Medtronic and DreaMed was it was done several years ago. And DreaMed while I'm sure very proud of that algorithm, they've moved forward, they moved on they want to talk about something else. It was very interesting for me to go through this interview, and I hope you enjoy it as well,

for more of the mundane, less technology and more basic, how much more basic can you get with diabetes and insulin? I'll give a quick update at the very end of the show. I had mentioned in a previous show, we had some insurance changes, a bunch of you wants to know how that was going. Hey, yay, insurance changes are always fun. So I will talk more in detail about that at the end of the show. But in terms of insulin, yeah, we're switching types. Don't you love that? We had been on novolog for many years. And then when Benny was I want to say about eight or nine. We switched insurance and they switched us to human log and we have been on that ever since he's 15 and I guess it's time to go back to no vlog. So I'll talk more about that at the end of the show. Luckily, we don't have any issues or haven't had so far I know a lot of people do. Fingers crossed. So yeah, insurance update and more at the end of the show. All right. Interview with the CEO of DreaMed in just a moment.

But first diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device you've seen this. It is sleek, compact, seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription, you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes and click on the One Drop logo to learn more.

My guest this week is the co founder and CEO of DreaMed and is really company with the slogan we treat the data you treat the person Eran Atlas talked to me about everything from their partnership with Medtronic. As I said they develop the algorithm that's inside the newly approved 780 G to their newer technology. And this is all about helping doctors better interpret the data they're getting from CGM and pumps. He mentioned a brand new study on this, comparing their algorithm very favorably to outcomes from Yale and Barbara Davis diabetes centers. And I will link that up in the show notes at Diabetes I learned a lot from this conversation. I really hope you enjoy it as well. Here's my talk with Eran Atlas of DreaMed.

Eran, thank you so much for joining me. I'm excited to learn more about this. Thanks for coming on.


Eran Atlas  4:49

Thank you very much for having me.


Stacey Simms  4:50

All right. Tell me just generally, what is DreaMed What does this mean for the diabetes community?


Eran Atlas  4:56

Well, you know, for a certain amount of years A lot of effort has been invested on, let's get more accurate glucose measurements, let's get more continuous glucose measurements, let's get those glucose measurements and insulin measurements being connected. And everybody told us that if we will have more data, more accurate data, more accessible data, all the problems about managing people with diabetes will be solved, right, because the patient will be more knowledgeable, the providers will be more knowledgeable, will have the tools to get into a better decision.

Now DreaMed started as a technology team within one of the biggest Institute's that treat people with diabetes, Type One Diabetes here in Israel. And what we saw there is that data is not all and and sometimes in order to make this analogy, these logic thinking between data and decisions, there is a lot of gap that you need to jump in order to make that move. You need to be experience, you need to know what is important, what's not important, and you need to be able to make the right decision in the right time for the right patient. So what dreamed is taking on is we would like to take the responsibility of allowing providers and patients to make better decisions about insulin dosing.

When we started in 2007, the Holy Grail was okay, let's try to develop these automated insulin delivery algorithm that will make these decisions in real time. And we managed to do a prototype and we published these results as were the first publication in New England Journal of Medicine. And finally, after didn't several clinical trials send people home, we were the first group in the world that sent people home with automated insulin delivery, we licensed that to Medtronic diabetes. But the cohort of people that are going to be using are currently being using automated insulin deliveries pretty small depend on the amount of people with diabetes type one type two that needs to make decisions about insulin. So what dreamed is now focusing is on developing those and commercializing those algorithms that will be able to take all the vast amount of data that's out there, and it can be accessible from cloud to cloud, mobile and everything. And how do we get into the most accurate, personalized decision about how much insulin a specific person with diabetes need to infuse? Not just in terms of real time, but more about looking on the treatment plan? How to optimize carb ratios? How to optimize basal treatment, how to optimize insulin sensitivity factor? What is the difference between a patient on an insulin pump to a patient that is using multiple daily injections based on only different kinds of types of injection regimen? That's what DreaMed right now to do. So we would like to make sure that we will treat the data. So a person with diabetes can continue to live in a provider can start dealing with the person that is in front of them and not just looking into the computer, making himself a technician with numbers and decide what to do.


Stacey Simms  8:04

you have heard the podcast. So you know, I'm easily overwhelmed by data and information. I listened to everything you said. And here and I'm trying and here's what I heard. We want to make life easier for you. There's too much information that comes your way even with accurate CGM. Even with automated insulin delivery, there's so much data and information that unless you are a numbers person, you know, you may not be able to crunch it yourself. And I know you, you mentioned already a lot more down the road. But if I could focus on that the automated insulin for just a moment and come back to some of the other things. Can you just tell me as I'm listening and please correct me if I'm wrong, Vinnie, my son is using control IQ with the algorithm that's inside the Tandem pump using partnering with Dexcom. Is this sort of that? Is that the first step that you're talking about when you talked about automated insulin? Is it the algorithm that controls the pump in the CGM together?


Eran Atlas  8:56

Correct. We started in 2007. Building such an algorithm at the time we called him the medical doctor, the MD logic artificial pancreas. And the idea of what is different between the algorithm that we developed back then and the one that you have right now in control IQ, is how do you make these real time decision about how much insulin to infuse and, and while control IQ, as you may know, is using MPC technique, a Model Predictive Control, and you have that model of Medtronic that uses a different kind of type of control. It's coming from the engineering world, we were strong in understanding how physician analyze data and what we did is we took a technology called fuzzy logic, and I thought you know what fuzzy logic is but I'm sure you have it in your washing machine, and you have it in trains in China and everything. And the idea behind fuzzy logic is that you know why the world is not one and zero black and why there has to be a mathematical way to make decisions based on gray areas. And it's pretty much the way that we're thinking as a person.

So, we took his the way that physicians analyze data, make a decision and automated using dispatches fuzzy logic. And we develop these automated insulin delivery algorithm. And we tested it and when he got the the ability to communicate with Medtronic pumps, and now, we have our some part of our algorithm is going is inside the Medtronic 780G that they announced that they got to see mark for that in June DC or in there, I'm sure that they're going after that the FDA, the main difference between what we did and what happened in control IQ and Medtronic 670 G, is the fact that we were the first that play with the changing automatically both the basal and bolus. And we have the ability to predict glucose into the future and dose insulin based on the predicted glucose. Some of the elements that we have, you have also in control IQ. And I noticed Ctrl Q is working pretty well. But one of the things that we had in that time is the understanding that there's a lot of sensitivities off the patient that these AI D algorithm will need to use. So for example, when you are using your control IQ, you still need to go through your meals, right? So you need to optimize your carb ratios. And some of the safety limits are still dependent upon the insulin sensitivity factor off the pump or the open loop basal rate of the pump. So the algorithm is like riding on that basal rate. So we had a similar methodology. And we developed these what we call today, the DreaMed Advisor. It's that algorithm that optimize the sensitivity factors. So I back into the time we have two pieces of our technology. We only licensed one of it to Medtronic. And we continue to develop the other one because we believe that the other one will have a much more larger number of people with diabetes.


Stacey Simms  12:01

So tell me about that other one, where will it be used? Or you're talking about people with type two or people who use insulin, any type?


Eran Atlas  12:08

So that's an interesting question. So we just we started with an algorithm that basically optimize open loop pump therapy, and we took data from CGM at the beginning. And history of pump delivery basically did an automated way what any physician is doing in the clinic right now. And we developed that technology we got we won a grant from Helmsley Charitable Trust back then in 2015. I out of 70 applicant applicants got $3.5 million to evaluate the performance of this algorithm versus doctors from Joslin Diabetes Center, the School of Medicine yell, Barbara Davis in Colorado University of Florida, within three sites in Europe, with the intention to show that if you are a physician, any kind of type of physician that uses all algorithm, you'll get into the same clinical outcome as if that patient data was analyzed by doctors from these leading academic diabetes centers. And yesterday, the results of the study were published in Nature medicine, showing that we are doing the same outcome. As expert Doc's. If you can think about it, 60% of the cohort, we type 1 diabetes, the adults one are being treated by primary cares where we can do to the to the glucose control of these patients, if we will equip those primary cares with a technology that helps them analyze data and get the same performance as special endocrinologist, what we can do to the touchpoint of changing the insulin treatment of a patient, if instead of the patient will need to wait 3, 4, 6, 8 months to see his endo will have some sort of virtual place that he can send the data and share the data with the algorithm the algorithm will make all the calculation and recommend how to change the insulin dosage or the insulin treatment plan of that patient. So that was the what we did so far. And when we approach FDA, we that FDA didn't know how to regulate such a device. Yeah, because there was no predicate to what we offer to FDA to do. So what we managed to do with a very strong partnership with the FDA team is to decide and we will regulate this device as a new product. So in 2018, we got FDA clearance based on 510 k de novo. So we are the first in the US system that regulated a product that an algorithm can take continuous glucose sensor data and make recommendations to our healthcare providers how to optimize insulin treatment for our patients.


Stacey Simms  14:44

So I'm trying to break it down because that does sound like such a useful tool. I'm an adult with type one, I'm seeing a general practitioner who may not know the nuances of treatment, they take my CGM data, they take my dosing data either I'm assuming either from a pump or from me They send it to your service, the care provider, the doctor then gets the data back and can give the patient advice based on your technology using the expertise and you know, from the algorithm. And that new study said that advice is comparable to Yale and Barbara Davis and all the places that you indicated. Did I get that right?


Unknown Speaker  15:21



Stacey Simms  15:28

Right back to Eran in just a moment. And he's going to be explaining their agreements with other diabetes groups like Glooko, like Tidepool, but first diabetes Connections is brought to you by Dexcom. And do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you can use it on both a desktop or as an app on your phone. It's an easy way to keep track of the big picture. I try to check it about once a week, it really helps Benny and me dial back and see longer term trends, and help us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes and click on the Dexcom logo. Now back to my interview with Eran Atlas


Eran Atlas  16:27

And the way that it has been flowing in so we sign a data partnership with gluco. With Dexcom, we take all we have our own platform, so the patient can download the data at home, he doesn't have to get physically to see the provider, which is super important, especially now when it COVID-19 is and then the data is coming to our system, all the provider needs to do is just push a button request the recommendation here we'll get that recommendation and nothing's going to get you know, blurred the things you know, please consider looking on. He will get exact numbers that the algorithm will tell them listen at 6am change the call ratio, that specific patient from one to 15 to one to 10 exact numbers.


Stacey Simms  17:11

All right, I have two questions. From a very practical point of view. I'm curious if you've run into a provider who says I can do this better? I don't need this. Sure. I don't know the difference between Lantus and Tresiba. I'm a general practitioner. But why do I need something like this? Have you run into resistance from providers? Or are they I could see the flip side, thank goodness for taking this off my hands because I don't have the time to learn all of this.


Eran Atlas  17:37

So there are two types of providers. So first of all, that the approval that we have right now the clearance that we have with FDA is just for type one people on insulin pump, we are pursuing the advance of the indication for use for the injection cohort and with the intention to submit it by the end of the year. But in the study that we did, and right now we are we already deployed the system in several clinics around the US. You know, we are in Stanford University, University of Florida, New York University, Texas Children's so that we are already people who have already more than 1000 people that use the technology. And so when we heard for them, these couple of things. So number one, it became they curious, they want to check, we want to make sure that we didn't make any false recommendations. And they're not agreeing 100% with anything that we are recommending. So we always allow them to edit. If there's anything that they would like to edit, they can edit it before they share it with a patient. But as time goes on, and they building their confidence with a system, they are relying on the system, and they're really feeling how they've helped them. So for example, Dr. Greg Forlenza from Barbara Davis said, you know, what would you use of your system, I can stop being a technician, I can learn to be a mathematical or an engineer, I learned how to be a physician. And I wanted to continue to go and practice medicine, I don't want to go and practice engineering. So this is one of the feedbacks. And I think that when we'll code to the mass numbers of providers, there will be different kind of providers, some of them will be resistance, but I think that one thing we'll see the clinical benefit and the response of their patients, I think that it will endorse that and it will build our confidence with it.


Stacey Simms  19:17

I love that that he doesn't want to be an engineer, he wants to be a physician. We should all be so lucky to have a doctor who wants to do that. My other question on this and I'm apologizing just throw things at you to mess up the system. But the first thing I thought of was somebody like my son who's a not an unbiased person, but he's a great kid. He is not a perfect diabetes person. Perfect example that I think would mess up your algorithm. This morning. He had I don't even know coffee, hot chocolate glass of juice. I don't know what he had. But he had something as he's going to virtual school to. He's he's right down the hall for me so I could go ask him, but I can see that his blood sugar has already gone up to 140 it'll drift back down thanks to control IQ. I don't know if he bolus for that drink. If or If people just after, what is the algorithm do when people aren't, quote, perfect diabetics, because you can adjust the carb ratio and the basal rate all you want, but most people with type one aren't automatons who are going to fit an algorithm?


Eran Atlas  20:14

Oh, that's an excellent question. I think that at the end, if you are creating something for the use of people, you have to understand that nobody's perfect. And you have to make sure that the recommendation that you are providing will be a right on the spot, because otherwise it will cause safety issues. So what we are doing, when we're taking the data, number one that we are doing, we are trying to split that data into events, and understand, okay, that's a meal event, that's a bonus event, that is events that usually debatable could make an influence because there's no BOCES a meal. Before afterwards, we also apply different kinds of techniques to automatically detect places where the patient ate, and the bowls for that, or didn't report the name use these calculator in order to calculate the amount of light and and then for each one of the events, we are trying to ask the algorithm is asking himself Okay, is it a issue of dosing problem? Or is it an issue of behavioral problem? Do we see the high glucose posted meal because the carb ratio is wrong, or because the patient just deliveries, bolus 1520 minutes after the meal, and there's no way that the glucose could be down? So we are from our experience, because we are so much integrated with doctors that understand data. And because you know, I'm here, ces 2007 is closing my 14th. year on February, we know so much about people with diabetes, how they behave. So we programmed the algorithm in that way. So the recommendation that we are delivering is on the spot. If we're saying that we don't have enough events that imply on changing and dozing will not issue that we can personalize even the behavioral messages and calculate what is the most important behavioral that will improve the timing range. And we're not issuing 20 types of behavioral messages. Learn to be have a message note, we're issuing no more than three. And we're very specific. So if we're seeing something that happened specifically on the breakfast of Benny world, tell him listen, Benny, please pay attention on breakfast, deliver the insulin, 10 minutes before the meal, because that's what's set what makes your entire day being hot. Or if we're seeing that when he has an iPhone, you just eat whatever he finds in the refrigerator. And we see it from from the dynamics, we're trying to teach him how to compensate for a high pole in a better way.


Stacey Simms  22:46

It's absolutely fascinating. I think that's tremendous that you're building in the behavior as well. And you can really account for it back to the automated systems. And forgive me, Eran, you used a term open loop rather than closed loop and pardon my ignorance, you explain what that is?


Eran Atlas  23:02

Sure. So open loop is what we call using pump therapy with CGM or with self management blood glucose meters without any ID system. So though some people call it sensor augmented pump therapy, some people say just a regular insulin pump therapy. Some people say it's open loop, there is no algorithm that closed the loop in real time and command in real time how much insulin to infuse on an insulin pump based on CGM data.


Stacey Simms  23:33

Okay, if we go back to the algorithm that is more closed loop and kind of looking ahead for what you're planning on that we've already talked about mealtime, boluses, and how challenging they are for people, whether it's estimating correctly or remembering to do them or doing them late. What's your plan for that? I know there were a few AI systems that are looking to try to do away with a manual mealtime bolus is that in the cards here.


Eran Atlas  23:56

So for us is not on the cards at a moment. I think that what we are trying to look is is beyond the AIP system. It is how to help those with type two on insulin, how to have those on injections because think about it a couple of years ago, nobody knew what's going on with people that still doing injections, right? None of them knew CGM you didn't know what's going on with injections because they didn't record that or they just cheating and when they sat in, in the reception area of the clinic, they to complete the paper and and try to make lottery on when they did at those doors. They're instantly now these days been available thanks to the hard work that Dexcom you know avid Medtronic is doing on the CGM space and companies like companion medical and others they're doing you're connected to and and we know other efforts of other companies. You know, no voice is doing that Louie's doing that. So all of a sudden the same problem that we had a couple of years ago when people on CGM and pumps for the type one persons and depression And the amount of data, we're not going to have it in a much, much broader population, you have about 12 million people that dose insulin in the US, but only 1 million of them are on pumps with type one. So the question is, what are you going to do with these 11 million people? And that's where our focus on that's number one, another focus that we are looking at is going into contextual data? And how can we know and combine the fact that we can know where you are from your personal life in terms of you know, if you are driving or you are walking, or you are going into a restaurant? And how to combine that information with the glucose data? And what predictive real time notification we can give you in order to improve that, and the glucose control?


Stacey Simms  25:49

Alright, wait, wait, you're gonna know where I'm driving? I'm walking to a restaurant. Wait a minute back up? Are you in my this is something in my phone? Are you using cell data?


Eran Atlas  25:58

That's easy. You know, when you're driving? Do you have a Bluetooth in the car? Yes. So the phone knows that you are connected to the Bluetooth of the car, right? Yes. So for example, if you will give the permission, our application will be have the knowledge that you are driving? Are you using navigation software?


Stacey Simms  26:17

Yes. Do you have to lift or no, I don't mean to interrupt your train of thought here. But for some reason, I just thought of the Pokemon Go app from a couple of years ago, because it knew when my kids were in the car and not walking, right. I mean, I know I sent you're probably laughing because I sound so ignorant with this stuff. But yeah, with our cell phones, I'm sure that everybody knows where we are at all times. It's


Eran Atlas  26:37

amazing. That's right. But I think again, so I'm not talking about you know, poking your privacy and everything. And it's have to be on a certain things that that the user will need to authorize, or the benefit of the user, but but potentially, many will learn driving, like they will go into any driving license, I'm sure that nobody wants a person with diabetes, that these glucose is going down or predicted to be down in next 30 minutes to start driving.


Stacey Simms  27:05

So would it give in your system, would it then give a reminder, um, you know, I'm walking into a restaurant time to bolus Is that what you're envisioning.


Eran Atlas  27:13

So again, your glucose is dropping in the next 30 minutes it please take something before you start to drive. Or we're seeing that you're going into a restaurant and you're using glucose is sky high, or going high and the high trend, please correct your glucose now before start eating, because then it will be much more difficult to correct your glucose. These are the types of things that you know are examples of how you take context and combine it together with glucose and insulin data.


Stacey Simms  27:41

It's so interesting to me, because I think, especially with the type two community who use insulin, it's a very different world than the type one community where most people well, I'm biased, because my podcast audience is so well educated. But people are thinking about it so much more often. I have lots of friends with type two, who dose insulin who don't really think about it, who don't really know, just because they're, as you said, they're seeing a general practitioner, they're not as educated. It's not a it's not a personality flaw. And I could see where this would be so helpful. Just these reminders with people with type two, have you already learned any nuances of how they want to use this kind of system? Is it different than people with type one?


Eran Atlas  28:22

So I think that within the type two population is very much dependent when there are on multiple daily injection therapy, or they're just doing basic only. So that's one big difference between type two and type one another big difference is Yeah, like you said, they're thinking about the condition differently. They are denying the fact they have a condition. I think that's much stronger than people with type one, especially teenagers with type one that you know, try to break the system and try to see what's going on. But it's still you need to find other ways to do that. And we're still studying eighth, what is the best way to deliver that to people that have type two diabetes. And that's why initially we're focusing on their providers, and try to better understand what people that are treating people with type one diabetes would like to see how we can help the providers provide a better treatment for them. That will be our first step, then when we will get these endorsement and understanding about the actual users will be much more comfortable to offer something that will go directly to the user because as you said it truly it's a different population. I remember


Stacey Simms  29:31

years ago, there was a big push and I know you were you were around. If you started in the mid 2000s, there was this big push to almost gamify type 1 diabetes, right with apps that kind of gave you rewards for checking or here's a game that would help kids learn or even adults. And it turns out that most people didn't want to think that much about it. They just wanted the system to take care of it like stop reminding me to log stop reminding me to dose handle it. Talk to me about how DreaMed will do that. Even though You are talking about reminders,


Eran Atlas  30:02

because I think that the difference between the reminders that are in the market, they used to be in the market. And what I'm trying to talk about is that those reminders were based on general timeframe. So for example, you know, you're logging into the app that you need to take your basal insulin between seven and 9am. And and now it doesn't matter if you are going just to go into deliver that it will be some sort of mechanism to just ping that, that reminder to you and will drive your crazy, right? I think that what dreamin is trying to do is a couple of things. Number one, we're not just giving them regular reminders, we're giving actionable reminders, so it will tell you to do something, because this is the right time for you to do these actions. And number two, we are trying to take off the burden of treating diabetes, you know, taking the burden off thinking about your glucose and thinking about what you need to do right now, for people that use a ID system. This is exactly what he gave them, you know, you know that there is something that looks on your glucose on a regular basis every five minutes, analyze the situation and provide your the actual dozy, but on people with with multiple daily injections are not using pumps. So there is the only way to make the insulin injected is to make some sort of a partnership with a user. So that's what we're trying to do. We're trying to create all the mechanisms that will bring this partnership between the person with diabetes on injections and the algorithms, we're trying to make sure that wherever we are issuing some sort of reminder, it will be an actionable one. And and hopefully it will be within a certain timeframe that the user is willing to accept such a reminder, because for example, if you're driving and then the system is shouting out, give insulin right now there's no way that you're going to give that insulin right because right now you're driving. But if we're able to capture the exact moment that you're open to get that reminder, and this international reminder, it's not a general one, I hope that people with diabetes will find it useful. And I think that's the thing that we are trying to learn together with the community. And to be are we personally diabetes at work for us, because at the end, it's a partnership between the person, the provider and the industry. And that's what we're trying to create. It's important for people to know that there are companies that are not in the US and might be a little bit small, but they are trying to make a difference for you. And I hope that together with what we're trying to do and what the community is trying to do, when we are partnership, we really, really be able to make that difference. Because the culture of dream ed is coming from a clinic. It's a company that the importance of making lives better is on our culture. Another thing in our countries, make sure that whatever we're issuing has a clinical benefit. We're just not not just want to have a cool product and just get more money. And I really, really optimistic about the impact that we can do on people with diabetes. And we're committed to do that


Stacey Simms  33:14

around before I let you go. Do you mind if I ask about the population with type one in Israel? Sure. I'm trying to think I know in Scandinavian countries, it's very high.


Eran Atlas  33:23

it's debatable, but it's between 30 to 50 k people in type 1 diabetes in Israel, this is it. But we don't have a lot of people with type 1 diabetes. If you're looking on the pieds all the peas are being treated by you know, academic centers, big hospital clinics, the clinic that I'm coming from, is pretty much treating a very large portion of this of the kids and adults are usually go in the same way either to a specialist, but the most of them are going into two primary cares. Where were very techie we were had a lot of a lot of people on CGM and insulin pump. We currently don't have control IQ and ease rail. It's not approved so and 670 G is not reimbursed so the majority of the cohort here in Israel are on regular pump and CGM.


Stacey Simms  34:11

This is well as I said, before we started taping, my son is planning a long trip to Israel next summer. So maybe knocking at your door if you're just some hand holding.


Eran Atlas  34:22

I will be happy to I will be happy. Don't worry. Yeah, I think I can vouch for that.


Stacey Simms  34:29

Everyone, thank you so much for joining me in explaining all this. I really appreciate it. I hope we can talk again soon.


Announcer  34:39

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  34:45

More information in the show notes Just go to Diabetes And every show has show notes we call them I call it an episode homepage as well because not every podcast player supports the amount of stuff I put There, every episode this year has a transcript. Every episode ever has links. And so sometimes if you go to Apple podcasts or if you listen on, you know, Stitcher or Pandora, or wherever you listen, and we are everywhere, right now, they don't support the links. So if you're ever curious, or you can't get to something, just go to the homepage and find the episode, there's a very robust search, because we're up to 325 episodes. So I wanted to make it easy for you to find what you were looking for. But when you do that, you can find more information about DreaMed, and I linked up the study as well that he mentioned, comparing their algorithm to doctors at Yale, that sort of thing. You know, I'm curious, as you listen, what you think about something like this, I feel like this podcast audience is so involved in their numbers in a way that most people in diabetes land are not. I mean, let's face it, there's very few people who are interested in DIY stuff like this audiences. I mean, I know you guys, you're very technical, you're very involved, even if you're listening, saying, hey, that's not me, the very fact that you're listening to a podcast about diabetes puts you in a different educational plane, then, you know, 90 95%, let's say, of all people with all types of diabetes, which is not a knock on them, it's just the reality of diabetes and education. So I'm really curious to see how this can help. Because as he's saying, you have a general practitioner, who's treating people who's dosing insulin, right, they're given the prescriptions out. And an algorithm like this can make it so much more precise and safe for the people who are getting those recommendations from these doctors who, you know, might really want to do good, but do not have the experience of the education in at a chronology. So that's my stance on it. We'll see what happens I'd love to know what you think. All right, innovations coming up in just a moment. And I want to share this article I found about women in diabetes a device design, but first diabetes Connections is brought to you by a new sponsor this week. I am so excited to welcome g Volk hypo pen. You know, 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 evoke hypo pen comes in Jeeva is the first auto injector to treat very low blood sugar. evoke hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use, how easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes and click on the G Vogue logo. g Vogue shouldn't be used in patients with pheochromocytoma or insulinoma, visit Jeeva slash risk.


saw a great article that I wanted to pass along to you from the wonderful folks at diabetes mine. And the headline on this is where are the women in diabetes device design? And I'm not going to read the whole thing to you I will link it up. But the question here was all about our the shortcomings of diabetes technology a result of just the the functional design requirements the way it has to be made? Or could it be related to the fact that there aren't enough women in the medical technology design field, they did a whole survey about you know wearing this stuff, and you know where to attach it, how to put it, you know, dresses, things like that, which you know, at first, listen may sound kind of silly. But when you think about it, wearing the device, the comfort of wearing the device, the mental stress about wearing the device, these are so incredibly important, because people with diabetes men and women, as you know where this stuff 24 seven, I mean, you think about the difference between something that is clunky, that looks outdated, that, you know, just doesn't feel right in your hand. I mean, these things make a big difference in terms of how I hate to use the word compliant, right, but you know, how well we use them how much we use them how comfortable we are with them, in addition to focusing on the pump companies, and in particular Omni pod, very, very interesting take on women who work at Omnipod there, they also focus on women designed accessories for diabetes tech, because when you think about it, and they list all of these companies, you know, we've talked about a bunch of them in the past myabetic and funky pumpers spy belt tally gear pump peels, one of my book to clinic sponsors, thank you very much pump peels, these are all founded by women, because they saw the need and wanted to make life easier and better. So I'll link that up. I really thought it was a great look at a topic that we hadn't thought a lot about before. We focus a lot on what patients need to be involved people with diabetes who actually wear the gear need to be involved. But what about people who wear the gear differently and have different expectations and that by that I mean women. My daughter when she was in high school, wrote a whole paper on pocket equality and did hard research into why women's clothing doesn't have pockets and rarely has pockets that are big enough. I mean, my son puts his phone and his palm I don't know, you know, a lunchbox in his pocket, and he can fit everything in there. He doesn't think twice about it. But sometimes I think about where the heck would I put a pump, if I was wearing what I'm wearing today, right, I have any pockets. Really interesting discussion and hats off to diabetes mine for focusing on that innovations is also your chance to share hacks and tips and tricks that work for you, you know, just little things that make life better with diabetes. So you can post in the Facebook group, or you can email me, Stacey at Diabetes


Didn't tell me something good this week, a big award for a familiar face around here. Most of you remember Dr. Nat Strand from The Amazing Race. She was the in the team of Nat and cat. And that was The Amazing Race 17, which I can't believe was 10 years ago. We talked to Dr. strand, earlier this year about working as a physician. And during this time of COVID. And how she was treating her patients. She treats patients with chronic pain and that sort of thing. And we're talking about her on tell me something good, because she is the inaugural winner of the Lisa Stern's legacy Diversity Award from the American Society of pain and neuroscience. So congratulations, Dr. strand. Of course, the ceremony was virtual, but you could follow her on Twitter and see the pictures and see what nice things people are saying about her and I will link up her Twitter account if you don't follow her already. Also, in Tell me something good. Something that popped up in my local group. Brian shared a post about his daughter Emerson about diabetes and soccer. And he said I could share it. And it's actually a story about her. It's a story by her. It is Emerson's sucker rista story playing with diabetes. And this is a column that Emerson wrote that is published on the girls soccer network, I would really urge you to read it especially if you have a child who is a high performing or wants to be a high performing or elite athlete. She talks about no days off. And how well you know I'm sure your mind went to diabetes. That was her mantra in terms of sports. And it has really helped her she says deal with soccer. And with diabetes. I'm not going to read her words here. I just think it's a great column I would urge you to read it I'll link it up on the episode homepage and I'm going to put it in the Diabetes Connections Facebook group as well. Well done Emerson really great to see the incredible hard work that it looks like you've been putting in and what a wonderful column as well. So thank you so much Brian for sharing that and for letting me talk about it a little bit here. If you have a Tell me something good story could be a birthday a diverse serie, you know, your child has published in a national print publication, you know, anything you want to focus on, that is good news in the diabetes community, please reach out and let me know, just tell me something good.


Tell me something annoying, could be the name of this segment, I just want to talk a little bit about our insurance changes, mostly to commiserate with with many who have gone through this. So as I said at the top of the show, our biggest change is now that they're going to switch insulin on us. You know, I talked to Benny about this, we are so fortunate to have a frankly, have a pretty good stockpile of insulin that we've built up. If you follow the show for a long time, you know that I've discussed his insulin needs went way up. And they have gone back down to almost pre puberty levels. But we never changed the prescription. So you know, I have unfortunately or fortunately, I don't know I have shared insulin in the Charlotte area with adults in need. We have some great local groups. And it is ridiculous that we need to do this, but we do share with each other. And I've been happy to help out on that. But we are basically out of pins. And I like to use pins as a backup. And Benny likes to have them for flexibility. You know, he'll take them sometimes. And if something's wonky with his pump, he knows he can get himself a shot, that sort of thing. But I hate the idea of changing insulins right everything's cookin right now everything's chugging along really well. I don't want to rock the boat. But I also don't want to pay $300 for a pen. So I'm going to be talking to our endocrinologist, Vinny has an appointment in two weeks, as I'm taping probably more like a week and a half as you listen. And we know we'll talk about it, then maybe have some samples, but most likely we will be switching and we did not have an issue when we switched in the past. So I have fingers crossed that it will be fine. It'll be fine. But that is annoying. And I know I don't feel like appealing and fighting if we don't need to. It's possible that novolog will work just as well for him. So let's at least find out and we'll go from there. The other issue was, of course, that we are now dealing with edgepark. And I will spare you all of the details. But I tried to do a workaround. And I'm laughing because I should know better by now. I tried to get the Dexcom prescription to stay at our pharmacy because man we've been filling it at the pharmacy for the last couple of years. And if you have already been able to do that, you know, it's like a dream. At least it is for us. It may take an extra day to get it but it's a day. It's not like they're mailing it out for you and it takes three weeks. It's been wonderful. And I just had on auto refill. And it's been great. But edgepark told me, we don't filter your pharmacy, you only can do it mail order. Well, I didn't want to wait. I didn't want to be cut short. So I let edgepark go ahead and fill the order. But then I did some detective work. And I kept calling and talking to people, because what else do I have to do, but be on the phone with these people? And I finally got someone at my insurance company to admit they would fill it at the pharmacy. But here's what she said. She said, Well, we don't like you to go to the pharmacy, because they don't often have it in stock. And I said, Come on, you know, that's not true. They can fill it in a day. They've been filling it for four years. And she said, Okay, well, you can you do a pharmacy benefit and, you know, blah, blah, blah. So I hung up the phone, and I will fill it at the pharmacy next time. I already have the order from edgepark through the mail. And I thought you know, that's just because my insurance company has a deal with edgepark. That's all that is. She's trying to discourage me from going to the pharmacy because that's their business. I get it. But how stupid is that? How outrageous is that? Oh, now you know why I saved it to the end of the show. I will keep you posted on our many adventures as this moves forward. Because Up next, I have to fill Benny's tandem pump supplies. And we've never been able to do that at the pharmacy. So I'm sure it'll be more adventures with edgepark my new pals. Ah, goodness gracious. All right. Thank you to my editor john Kenneth for audio editing solutions. Thank you. If you are still here, listening to me rant. I love you. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.


Benny  46:35

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


Transcribed by

Sep 23, 2020

Helene Cooper has type 1 diabetes, asthma, and she's Black. All of those factors increase her risks if she catches COVID 19. They're also exactly what the researchers behind one of the vaccine trials were looking for. She's now in that Phase 3 Trial and shares what it's been like.

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

Helene is also a reporter for the New York Times, covering the Pentagon and has an incredible story that began well before she was diagnosed with type 1 at the age of 15. She and her family fled here from Liberia in 1972.

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good, a few high profile birthdays and diaversaries

Our episode with the Dooley Family

Our episode with Dennis Goldensohn

Plus, Innovations – see through is your organizational friend.

Learn more organizing tips from Susan Weiner

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

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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:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.


Announcer  0:21

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:27

This week taking part in a COVID vaccine trial. Reporter Helene Cooper has type one and asthma and says she decided to apply after she met Dr. Anthony Fauci backstage at Meet the Press. She says at first, he wouldn't really answer her questions about her odds


Helene Cooper  0:44

And finally, he just he was standing by the door to go on air as we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really need to not get it. Oh, God, I really need to not get this.


Stacey Simms  1:00

Helene is now in a phase three vaccine trial. She's a New York Times Pentagon reporter and talks about what it's been like doing her job and living with T1D during this pandemic

in Tell me something good a couple of high profile birthdays and diversities plus innovations. Why see-through is your organizational friend.

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 so glad to have you along. I'm your host, Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. That was back in 2006. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that's how you get the podcast.

There is so much in the news these days about the potential for a COVID vaccine. news about the trials political news about vaccines. This episode is a personal story about one woman's experience going through one of the vaccine trials. So I just want to let you know about that right up front. And a big thank you to Gillian McPhee, who in the Facebook group Diabetes Connections The Group shared the article that Helene Cooper wrote about her experience getting into the vaccine and a lot of what she shares here on the show, but I will link that up.

I reached out to Helene on Twitter, and she graciously responded. Now Helene has an incredible story, even before she signed up for this trial. I mean, well, before she was diagnosed with type one at the age of 15. She and her family fled here from Liberia. And I'm going to link up that story in the show notes at Diabetes It'll be on the episode homepage. I'd really urge you to read that.

But one of the problems with the vaccine trials was all of the COVID vaccine trials is getting enough people into them. I'm also going to link up more information on that and I'm going to come back after the interview and talk a little bit more about it. I know you want to hear from Helene. And we'll get to that in just a moment.

But first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern beater My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes and click on the One Drop logo.

My guest this week is doing us all a huge service by participating in one of the trials for the COVID vaccine. As we recorded this interview, Helene Cooper had taken the first shot. She is due for the second in just a few days as this episode airs. Helene is a New York Times Pentagon reporter, but she says that's not why she was selected. She explains it is because she lives with type one, she has asthma, and she's black. There are not enough people from any of those groups represented in any of the vaccine trials. I tried to cover a lot with Helene and as this is an ongoing story. She was gracious enough to agree to come back on maybe a couple of weeks that she's further along and share more about her experience. So here is our talk.

Hello, and thank you so much for taking the time to talk to us about your experience. I really appreciate it.


Helene Cooper  4:35

I'm happy to be here, Stacey. I've never been asked to talk to diabetics before. So this is kind of cool.


Stacey Simms  4:40

Oh, nice. Well, I always like to tell guests like you that you don't explain the difference between type one and type two. We speak the language. We get it. I'm just so interested in so many of your experiences. But let's start with the COVID vaccine trial that I saw that article came to my attention. How did you get in the trial to be If you could kind of start from the beginning,


Helene Cooper  5:01

okay, I was watching Dr. Fauci on testify, I think it was before the House. It was either July 30, or the 31st. And he said that all of these vaccine trials were getting underway. And he said they needed volunteers. And he rattled off the name of a website that you could go to to volunteer. I don't know why I did it. But I just went on to the website, and I filled it out. I said, I was type one diabetic, I put that I have asthma I did. I filled everything out and went on about my business. And then a couple of weeks later, I was in the Outer Banks. So it was like, it was somewhere around August 28, the week of august 22 23rd 24, something like that. I got a phone call on my cell phone from GW from a clinical research associate, who said I had been picked for the Maderna trial.

And then I got nervous, because it's like, it's one thing when you fill out the questionnaire, and you think they're never going to call you and then they call, she said that I've been picked because I was type one diabetic, they needed to see if the vaccine was safe for people like me, I asked her a lot of questions. Because my first fear that a friend of mine had put in my head was what if they give you the vaccine, and then send you to like a high risk area and ask you to wander around without a mask or anything like that. And I thought, Well, I'm not doing that.

I've been super careful for the past six months, because I think we heard pretty early on, I still remember that sinking feeling in my stomach back in February, and March where they started talking about the high risk people and seeing diabetes. And it just said diabetes, it didn't say type one or type two, which drove me crazy, because it's like, these are two different diseases. And do they mean but whatever.

When I saw I had run into Dr. Fauci back in on March 8, when I was in the green room for a Meet the Press episode. And the first thing out of my mouth, I walk in, and he was sitting on the chair, and it's like, wow, look, it's like I recognized it from TV. And I was I immediately started talking to him about COVID, because that's what he was there to talk about. And I was like, Well, I'm type one diabetic and blah, blah. I was like, you know, what happens if I get it? And he was like, he kept. He wasn't beating around the bush. But he kept saying, you need to not get it. And I was like, Yeah, but what happens if I do get it? And he was like, No, you really need to not get it. And he wasn't he wasn't answering my question, but not answering my question. And I wanted to know like, okay, most people get it and there's a 98% chance they'll be fine. My like a 93% chance or what, exactly what, and finally, he just seems standing by them. He'd walked out the door to go on air, because we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really needs to not get it. Oh, God, I really need to not get this.

So I have covered the Ebola pandemic in Liberia. In 2014. I didn't Liberia for a month during Ebola I and at the time, I understood then that I really needed to not get Ebola as well being a type one diabetic. So I put into place my Ebola protocols. I think I called them on March 8, where I was washing my hands all the time, I was staying away from I stopped touching people. I was I've been and I've been really careful. I wear masks. I only just now recently stopped wearing gloves everywhere I went that I had been doing that for a while. And nobody's come into my house except my mom, my sister and my nephew. And brother in law. I'm like, so I'm probably much more careful than most people are. Because I think we kind of have to be because there's so much we don't know, I'm just rambling at this point, not letting you ask any questions?


Stacey Simms  8:41

No, it's wonderful. A lot to unpack there as Yes. So let me go back when you said there's not a lot of information about type one and type two, we you know, in the community, we're talking about that all the time.


Helene Cooper  8:52

Yeah. One of the things everybody I've asked about it has said they don't because I went to my normal diabetic doctor, and I was asking her about this. And she said the problem they don't know. All they know is that the people who showing up in the hospitals and needing to be put on ventilators and leading and having severe reactions and get you know, and you know, getting really sick and dying. A lot of them tend to be diabetics, but then I asked, you know, are they type one are they type two, and they're certainly type two, but she seemed to think that they're type ones as well. And that's what this is based on. This is at this point. There's so much about Coronavirus that we don't know COVID-19 that we don't know. And so the whole high risk category for diabetic that has been determined simply based on the fact that these are the people who are showing up in the hospitals.


Stacey Simms  9:46

So let's talk about the vaccine trial, get the call.


Helene Cooper  9:49

I get the call. I freak out. I call my friend first I called my normal doctor but she's very super cautious and her response was like Why does it have to You. So I was like, Okay, I'll Park this somewhere for a second. And I called my friend, Kendall Marcus, who's an infectious disease specialist. Her response was immediate, she was like, vaccines are super safe, you should do it. And for Kendall to be just complete, like, usually she's cautious, too. And she's like, you got to be careful. But it was just complete. No, you should do it. And so I got a, you know, we talked through it. And she, you know, explained some very complicated sounding stuff about how they work because I thought they were going to be putting a little bit of COVID in me, and but she said that the modern no one was not that is messenger RNA is basically tricking your body into making antibodies by feeding you a little bit of mRNA, that makes your body think that it has COVID. So she was like, there's no chance that you could catch it from this, when there's no chance that you could give it to anybody from this.

And so I went, I showed up for my appointment, it was on a Wednesday, they give you it's, you're there, I was there for three hours, they gave me a COVID test, the nasal swab, because if it comes back positive, you're not going to be in the truck, because there's no point of you being in the truck. They gave me a lot of time, they gave me a full physical, took blood made me take a pregnancy test. There's all this stuff. And towards the end, then, is when I got the shot where the doctor was like, Okay, you've been randomized, you know, the blind woman is like the double the unblinded person is coming. Because of course I hadn't read they told me all of that in a sheet that they sent me that read talking about that, which is my own fault. And then the nurse came in with the vaccine, and she was not even looking at me and as a reporter, I'm, like, filled with questions. It was like, Are you kidding me? Like, is that what is that? Is that the placebo? Is that the vaccine? Which one? Is it? Going through all of this? I want to make sure I you know, I'm getting the vaccine, I know placebo, and she was just like, you need to just, you know, she said nothing.


Stacey Simms  12:00

Well, yeah, if anybody else knows besides that person, then it can be, it can ruin the whole study!


Helene Cooper  12:07

I got so much s--t from people when I put that in the article that I was harassing the woman about this dude, like you're violating the sanctity of the study. But it's just like, you kind of want to know if you got the placebo vaccine. When you posted your story in my facebook group for the podcasts. People were very well they Yeah, not pleased. No.


Stacey Simms  12:30

But I can tell your personality, right? Yes,


Unknown Speaker  12:33

you can laugh. No worries.


Stacey Simms  12:36

One of the questions that actually came up in the Facebook group was whether you were the only person with diabetes in the trial. Now obviously, you don't know anybody else.


Helene Cooper  12:42

But it was. I am not because ever since I wrote that story I've gotten a lot of people have tweeted me, including type one diabetics were in the trial who have been and there's this one guy who's been so great, because he's like, let me tell you what happened to me I'm in the same type of trial. It's like his was with Pfizer. I think mine is butchering it, but it's the same technology. And he was like, the first shot felt totally normal, just like you and then the second shot, my sugar level shot up, I was sick for 36 hours and then it went away. And he was like, but it was just as if I had you know, how you get when you're diabetic with a flu, your sugar level goes high and all that kind of stuff. I was like, that means you got the vaccine. And he was like, well, be careful. You know, because just the cuz you sound like you don't think you're You got it, but I didn't I didn't think I got it when I got the first shot. And the second shot was like, Huh, so now I'm worried about the second shot.


Stacey Simms  13:32

Well, I was gonna ask you, did you have any kind of reaction blood sugar wise to the first one? Nope, nothing. I mean,


Helene Cooper  13:37

just some aches and pains. Um, some muscle joint, which I don't, I think was because I was camping on the beach. And I got like the the I got the stuffing pounded out of me by these ferocious waves was


Stacey Simms  13:51

curious if you asked your friend who said what if they give you the vaccine, and then they want you to test it by wandering around a hotspot? I can't imagine that's actually part of any clinical trial.


Helene Cooper  14:02

I would think wouldn't you do that in phase one? It's not part of phase three. But what's the What is it? Wouldn't phase one be remember? Did you see Contagion?


Stacey Simms  14:14

Right. But she did that on her own?


Helene Cooper  14:16

Yeah, but they got it tested some kind of way. How are they going to find out if it works if they don't see if it works? If they don't expose people to it? Yeah, shape or form. I mean, he was getting at. I got a lot of grief for that for putting that in the story. But I thought that was a very legitimate question to ask. And as a non medical person, that's what you're gonna wonder.


Stacey Simms  14:42

Okay, I'm gonna jump in here for just a couple of minutes. If you are wondering about that point yourself or maybe you are screaming at the two of us in frustration. Here's the real deal about how they do vaccine trials. Once participants get a vaccine will the researchers intentionally expose them, right? That's what we're talking about here. Will the researcher send a lien into a crowd of people as in the movie Contagion? Which, if you haven't seen it, it's a 2011 movie. It's all about if you haven't guessed, it's all about a pandemic. There were scientists who worked on that movie and made it very realistic and therefore quite terrifying. But to the question of did they send people who got the vaccine out into infected crowds? No, of course not. That is unethical.

I did a little bit of looking into this. And so here's what most of the publications say, because there are still no effective therapies to prevent someone exposed to COVID-19. from falling seriously ill intentionally exposing patients is a no go. Instead, the idea is to observe the number and severity of naturally occurring infections. Among the many thousands of volunteer participants who receive vaccines, or placebos. If there are notably fewer infections, or milder infections among the vaccinated group, that's how they tell the vaccine is working.

So I want you to take a moment and clarify that and we will go right back to my talk with Helene in just a moment. But first, diabetes Connections is brought to you by Real Good Foods. We've been enjoying Real Good Foods for almost two years now. And I got to tell you, I think with all of their new products, everything's great. But the pizza that we started with is really still our favorite. And we got an air fryer A while back. And that has really taken stuff like this to the next level. Although my I shouldn't say that because my husband still prefers to heat up the pizza, in a frying pan, or saucepan, kill, just heat it up that way. I don't know, maybe he doesn't wanna get the air fryer out. But to me, it's crisp beer, it tastes better, one less pan to wash at the end of the day, you can find out more about where to buy Real Good Foods. Our whole line is available in Walmart and local grocery stores. You can also find everything online, go to Diabetes and click on the Real Good Foods logo.

Now back to my conversation with Helene, where we are finishing up talking about that movie Contagion. And obviously, that movie was worked on by experts.

Stacey Simms  17:14

We've all heard all those stories but I haven’t watched it

since COVID. Started, I can't bring myself out


Helene Cooper  17:16

a good No, you gotta go do it. I did it. And I like it'll, it'll, it'll make you even more careful.


I watched it in March. I was like, Oh, hell no. Stay. Oh,


Stacey Simms  17:30

I will. Alright, I'll have to go back and look at that, then what happens? Is it a second shot? And then you're done? Or do you? I mean, they'll follow you. But are you done? Not


Helene Cooper  17:38

that they follow you up? Um, there's an app that you have to answer. The first week, the app was making me answer questions every night, take my temperature and all of that. And then it's gotten bored with me, and it stopped now. So I haven't gotten any good. So then you have the second shot. And they follow up with you. They're supposed to call you every week. And you answer questions on the app, and they just track you. And so presumably, it's a two year study. But they're shooting for, you know, a few months. Yeah, very quick.


Stacey Simms  18:11

And because they're they wanted to look at people specifically with diabetes. Are they also asking you to track blood sugars and things like that? Or they're just looking for safety?


Helene Cooper  18:19

or remotely related to but which I find curious, because that's like, they have not the questions or fever, body aches, pains and all of that they didn't that none of the questions are because the questions are all for the 30,000 people. So they're no special. I'm not in a special diabetic subgroup. But


Stacey Simms  18:37

it's interesting, because you are in three subgroups, diabetes, asthma, and being a black person. Yeah. So as you said, they were looking for people, you know, do you know if they were successful trying and this is gonna sound? I mean, I asked this question they were looking for


Helene Cooper  18:53

they I don't know the answer. They at GW moderna paused its trial to expand it because at first they weren't getting enough black people. So they went and cast the net, even wider. And I think they believe they've now got a representative sampling. The people at GW said that they felt that the sampling that they were doing reflected the city of Washington DC, which means then that they had a high black population.


Stacey Simms  19:18

So listen, you have a job that I assume you cannot do, only from home. No, I can't Pentagon is your beat.


Helene Cooper  19:25

I'm home a lot. And the Times went to, you know, to send us home back in March, march 13. And they're really good about that. And I do a lot of my job right now I do at home, but it's so different. It's harder, and I do have to go to the Pentagon and I do meet sources. And so I wear the tie I was issued and 95 masks by the times and you know, full, you know, kit, full kit and 95 mask. And when I go to work, like during the protest, for instance, I did some a little bit of that went to the Pentagon when I go to meet for sources and all of that Especially when you're at the Pentagon where you have to wear a mask in the building. A lot of people don't wear masks inside their individual offices. I've been in to meet with top generals at the Pentagon who have you in the office, but they're not going to wear a mask, they will take your temperature, but I don't think I think that's pointless. Yeah, test your temperature. But once you're inside, and then they'll always say, Oh, don't you can take off your mask if you want, but I never do. And I, that's when I wear that. And 95 because that will protect me, not just because you wear a mask to protect other people primarily, but the N 95 will protect you.

Even before COVID I'm curious, you know, a high powered career very busy, but also very much in when you work at the Pentagon, you're not fooling around, I'm curious if you would share a little bit about how you manage type one. Sure, your job, you have a son who's type one, so you know that it becomes like brushing your teeth, it's just something you do. I'm testing myself, you know, eight to nine times a day, I'm taking multiple shots a day. And that's just something and I've gotten really used to, I test in front of anybody, I don't wait, I don't like you know, I don't go, my sister laughs at me because I take my shots through my clothing, because sometimes you can't, you know, the needle, go through your clothing. And if you're on an aircraft carrier in the middle of something, you don't have time to go find a bathroom to you know, whatever.

And it's a long time ago, one of a doctor, Dr. Joshua barzilay, in Atlanta, when I was I just moved down there in my 20s. And he said, you know, you have a choice, you can make the diabetes conform to your life, or you can make your life conform to your diabetes, and I made a choice, I was going to make the diabetes conform to my life. So I've done everything I was embedded in with the third infantry division for the Iraq war I was I've been, you know, with all special ops groups, you know, behind enemy lines, I do all of that kind of stuff. And I just I keep a tight rein on my sugar levels. But there plenty of times where I have problems, you know, I've had insulin reactions, thousands of insulin reactions there. Because if you keep in control, you're very close to low, right? You know, if you're keeping between 80 and 120. It's, I've never gotten to the point where I have figured out how to keep between 80 and 120 and not have 60s, you know, you're running around at 300 400, then yeah, you're not gonna have insulin reactions. But if you're keeping in control, then you're gonna hit lows. And so I hit I hit lows, lucky in that I still feel them. I can tell when it's coming on. I carry sugar pills around with me everywhere. They're sugar pills. In every pocketbook. I have their sugar pills in my fanny pack their sugar pills everywhere. And that's sort of how I deal with it. And so I feel fine. I've had it for what I'm 54 years old now. And I got it when I was 15. So that's a long time. I haven't had any of the my kidneys are fine. My You know, my eyesight. I can't see for s--t. But that's not because I mean,


Stacey Simms  23:11

we're all wearing glasses.


Helene Cooper  23:12

Yeah. And everything so far, knock on wood looks okay. But it's something that you just you just deal with you. I mean, which you know, I assume because you've got a son who's just dealing with it.


Stacey Simms  23:23

Do you use any tech? Or have you seen either technology insulin pump CGM, stuff like that, not your style.


Helene Cooper  23:28

I don't like the pump. I tried the pump. And I didn't like it. I tried the continuous blood monitor. And I didn't like it. So I still I use pens. I have a mantra for my long acting, and I'm on human log for my short acting. And then I have the one touch you know, and I it's five seconds. And it's really easy. My doctor is so pissed at me because she's been after me for two and I won't do it. And every year she's like, Look, it would be so I tried to Dexcom and I hated it. It's waking up in the middle of the night and striving you not. And so I stopped after one month. And so she's I mean, I'm probably gonna fold at some point, but I haven't pulled it yet.


Stacey Simms  24:06

Well, I wouldn't call it folding if you want to try it jump into the group or I know you know what you're doing. But there's some advice on how


Helene Cooper  24:12

to not make it drive you up a frickin wall. Because it? I mean, yes. Oh, I would like probably that advice, because I think at some point, I'm gonna have to just do it. Well, that's another story.


Stacey Simms  24:22

Yeah. Tell me about your diagnosis story. You were diagnosed at 15.


Helene Cooper  24:26

Yeah, I my dad was diabetic. And for some reason, I think he was type one. I don't remember his type one or type two. Because he died in 1985. And I think he was type two, but he was taking insulin regularly and fairly aggressively, which makes me think maybe he was type one and we just didn't, I don't know.


Stacey Simms  24:46

So yeah, it's at that time, too. They didn't know about Lada and all the other things.


Helene Cooper  24:50

He was diagnosed when he was like 40. So that's, I think that's why they But anyway, so that's a whole nother set. Let's not get in. Let's get into what I know. Anyway, My mom, as it turns out, now it's type two. I'm from Liberia, West Africa. And my family had moved here in 1980. I was living with my dad, my parents had split up. My mom was back in Liberia for a year and we're living my sister and I were living with our dad in North Carolina and Greensboro. And I started running to the bathroom and being thirsty all the time. I was like, 15. Then I was a junior in high school, and I started dropping weight. I was skinny. But then I got really skinny. But I thought I was but I was eating. I was so hungry all the time. And I was convinced I had blown up because I was eating like seven meals a day, and horribly hungry. And in the middle of night, I was going downstairs and drinking apple juice and eating food. And I was like, I have to be so fat. Why am I eating like this? And my mom showed up to visit us and she came to the house Liberia and she my dad came to the school to surprise me because we didn't know my mom was coming. And they came to the school to surprise me. And they got me out of my class. And I go running. I was like, why are you living with me? And he's not noticing because you're seeing the person every day


to the doctor, and I was diagnosed and I was ended up in the hospital for a week in pediatrics.


At 15 I was very outraged that they put me Yeah, true. Yeah,


Stacey Simms  26:27

I bet but they're also at 15. You have no sense of your body, right? Your thumb. Oh, yeah, I'm eating


Helene Cooper  26:33

That's amazing. Yeah, I was so convinced that I was a pig. I was like that it was like all whatever. But anyways, so that's when, and so I remember they put me on this is so far long ago is like the 80s. They put me on these three different types of insulin to start x rapid, semi tard, some other top monitored, and I was having instant reactions and then shooting up and they were trying to I would take one shot in the morning. And that was it. And I couldn't get it under control. I was I was hungry all the time. Because they had they started me on too much insulin. And so I was hungry and eating. And it was just really it was bad. And I was only testing that's back when you would test with urine. Yeah, this is all before, this is a long time ago. And so I took my insulin, but that was all I would do. I would take my insulin in the morning, but then I ate whatever I want it. And so I was completely out of control. And it took years for me to get my act together. I mean, I went through college, you know, I feel like on a wing and a prayer, I took my insulin. So I never got went to the point where I didn't take my insulin, but there was a lot of but I was eating whatever I literally whatever I want it. And it wasn't like it was that much. But it was like you need to be 10. And I wasn't testing I would go like here and test myself. And then when I got out of college, I started a job in Providence, Rhode Island. And I was working out a lot then. So things my sugar level was probably much better in was lower, but I was having insulin reactions all the time. And then when I moved to Atlanta, and I met this doctor barzilay. And that's when he told me you can do this, or you can do that. And what he did for me that was the most important thing was if you are comfortable with taking multiple injections a day, and with testing yourself all the time, you can do what you want. And that was the that was the breakthrough for me.


Stacey Simms  28:30

Right? Well, somebody gives you a plan of action, rather than saying, here's the older insulins that really don't work to your life. Here's a man. No, you followed that.


Helene Cooper  28:39

Yeah, better. No, it was great. Because once it's like, once I realized it was like if I know a knowledge is power, he if you're willing to take the shot, it's nothing I don't, it doesn't bother me. And testing my blood sugar doesn't bother me. And if he sees like, if you're willing to do that you can do you can live the way you want to live. So it's great.


Stacey Simms  28:59

Before I let you go, I'd love to talk a little bit more about the clinical trial. Okay. very beginning of it. Are you so far happy that you did it?


Helene Cooper  29:07

Yeah, I'm happy I did it. I want to be part of you know, I want to be part of the solution. No, I've none of us want to keep this going for it's like, we're all shut in and we want it over to right. And it's at some point with the you know, we're gonna have to take a vaccine anyway. So yeah, I'm glad I did it. Whether it's a placebo or a vaccine, I'd be if I dropped dead from it. I won't be glad but that I'm gonna be glad I did it. Right.


Stacey Simms  29:33

Well, there was a lot of skepticism. Yeah, people of all political persuasions, yes. races of all disease states. I mean, let's be clear, not singling anybody out here.


Helene Cooper  29:43

Any message for people listening who may have an opportunity like that to take part in a clinical trial and are hesitant follow the iron. You know, that's I'm I'm a big believer in science. So that's, I'm divorcing myself from the politics. I you know, the whole vaccine by election. De that's not even going to happen. That's irrelevant, you know, even if they have somebody, at most be an announcement, but that's not going to mean anything. And that's meaningless, you know. And so just stick to the just follow science. If we follow science, we'd be better off on COVID to begin with, and science is certainly what's keeping me alive. So,


Stacey Simms  30:19

next step for you is the second part of the vaccine. And then maybe we can follow up with you in a couple of months if that's okay. Happy to wonderful


Helene Cooper  30:28

and I'll be complaining that death they definitely gave me the placebo.


Stacey Simms  30:32

And I can give you my review of contagion.


Helene Cooper  30:34

My re review. Okay, you if you watch contagion, I will come on your show again. Alright, we'll do I've


Stacey Simms  30:39

seen it, but it's been a very long time. So we watch it. Oh, you


Unknown Speaker  30:43

won't sleep that night.


Stacey Simms  30:44

I don't sleep now. Helene, thank you so much for joining me. It was a real pleasure and so interesting, I appreciate it.


Helene Cooper  30:51

It was fun talking to you, Stacey.


Unknown Speaker  30:57

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  31:03

More information about the Vaccine trials and about Helene story at Diabetes Just click on this episode, click on the homepage for it. There is a transcript we do that for every episode starting this year, really excited about that people seem to really like it. And I started that in January of 2020. And I'll continue to do that.

I'm also going to link up one of the many articles about the difficulty that scientists have had and researchers have had in recruiting black volunteers and other people of color to take part in these trials. And something to keep in mind is that the National Institutes of Health has suggested minorities be overrepresented in the testing at rates that are doubled for their percentage of the US population. So there's a lot more information on this as to why and how historically black medical institutions are getting involved. I thought that was very important.

You know, of course, we're looking at this through the lens of type 1 diabetes. But this is something that as you listen, I think it's important to be aware of as well. And boy, do I appreciate her coming on and sharing her story. the good, the bad, the ugly, she got a lot of pushback, as you heard for that article. And I will follow up in a couple of weeks. And I'm assuming she will have the same amount of candor. Next time we talk.

Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And you know, we started using control IQ that is the Dexcom G6 Tandem pump software program back in late January of this year, and we're doing less work for better results. I'll say that again. less work better results with diabetes. And I say we but it really is all Benny at this point. I mean, he's 15. And you know, you think about when we first got the CGM just to show up on the pump. What was that 2017. And that was a cool feature, but it didn't do anything right. But that secret sauce in the control IQ that keeps Benny in range so much more. It really lightens the burden. I think that's the best way to describe it is a one C has come down it was already really good. We're just thrilled. Of course individual results may vary. To learn more, go to Diabetes and click on the Dexcom logo.


In Tell me something good this week. We have some fun things to share diversities and birthdays. A very, very happy birthday to the Dooley family and I'm going to wish a happy birthday to the whole family because parents Christina and Greg celebrating with their triplets, Mia, Isa and Max. And I cannot believe that these kids are 10 years old. You may know the Dooley’s better. As the Inspired by Isabella family. Isabella was diagnosed with type one as a toddler. And she and her family have just been a huge part of the diabetes online community of friends for life. So many things. And boy, these kids are just knocking it out of the park, each with their own personality and strengths of course and different hobbies. But they all really seem to come together to support Isa. Christina is one of these very creative moms. She does all the stuff that I never did or dreamed of doing. You know very crafty, very, very fun with costumes, lots of lawn stuff going on since they've been stuck at home I mean this 10th birthday. I'll see if she'll put a picture too in the Facebook group but you know number 10s all over their lawn and big cutouts for the kids hobbies. So a big Happy Birthday to the Dooley triplets to Mia Isa and Max.

A big congratulations and a big diversity to Dennis Goldensohn. Dennis is a longtime listener and I first talked to him he's been on the show. I talked to him about reaching the age of 65 when Medicare kicks in, and we talked when he had just finished his first year on Medicare so I will link that up but I mentioning him now because he is celebrating 50 Two years of type 1 diabetes. And he posted in the Facebook group he has that Lilly medal that they give for, you know, for big milestones.

And he wrote, Hey, everybody, thanks because he was getting a lot of really nice comments about it. The objective here is not to brag about an award, but to say yes, it is possible to live with T1D and live a productive and long life. Now that is worth bragging about and what is really possible lead by example, Dennis is also very active in JDRF. I was gonna say his local chapter, but I think we're all one chapter now in North Carolina. So he's in the Raleigh area, I'm in the Charlotte area, but he's also active as a mentor. And I really appreciate it. So congratulations, Dennis. Here's to many more healthy years. And thanks for sharing that with us.

My episode last week with Jeannie Martin, who was diagnosed in the 1950s and has lived with type one for 66 years got a lot of attention. And it was it was just very well received. I mean, why not? She's fantastic. And I heard from other people who have lived with type one for a long time, who shared their stories. And Ron Doyle is one of those. He was diagnosed at age four in 1959. I am living life well. I'm a full time employee at age 65. I'm going to retire in my 70s. My Doc's told my parents, I would likely be dead before age six, but it's been a great life. And he writes, I still have all my toes at other important extremities. And Ron also shared I showed him an email back and said, Hey, thanks so much. Can I share this? And he replied, absolutely. Most people do all the good news they can get. He works full time as an IT guy, and he has a monthly radio show on tech. I'm going to link this up because his podcast, he says is tech for us gray hairs like me, I like to stay busy, Ron writes, and I will link up gray haired tech because I don't have any gray hair yet, Ron, but I probably could benefit from your podcast. And I'll put that in the show notes as well.

If you have a good news story, a diversity of birthday something cool, you've done a big milestone you know, a marathon or you've you've got up Mount Everest, whatever you want to share with the community. Just reach out and let me know you can always find to be Stacey at Diabetes Or you can post in the Facebook group every once in a while I will ask for more good news stories. I love hearing from you. Thank you so much.


My new segment innovation is all about tips and tricks, listener suggestions to make life a little bit easier with diabetes. And sometimes the innovations are big clinical trials approvals, that sort of thing. This week, I want to talk a little bit about organization with a great bit of advice I got from Susan Wiener. She is very well known in the diabetes community. She was the 2015 Diabetes Educator of the Year she's a registered dietician nutritionist, a certified diabetes educator, she's, she's the best I love Susan, I'm lucky enough to call her a friend. One of the things that she told me and she has a great book too. It's called the complete diabetes organizer. And well, that book has so much advice in it, we're just gonna focus on one little thing here.

And that is being able to see what you've got in terms of diabetes supplies. So if that means you're taking the stuff out of the box doesn't mean we know we get pump supplies or Dexcom supplies or even insulin, it's in a box that you cannot see through. So her advice is to put it in a clear plastic box so you can see from the outside. Or if you really can't tell at least Mark what it is on the outside, you know, tape a piece of paper and use a sharpie and write on it or use a clear plastic shoe bag, you can put individual supplies there. I've seen people put snacks in it so the kids can get what they want, you know carb counted, snacks are separated, you know, however you want to do in your household, but everybody can see. And the one thing I would add to that is whatever you do if you're taking your diabetes supplies out of boxes, and I do this because I also use

Gosh, speaking of organized, here's a little plug I use the T1Dgear, folks, there's a really wonderful small homegrown business, and they do 3d printing. And I'll link that up in the show notes as well but I use their stuff a lot. But you have to take everything out of the box, you've got to keep the labels if you need the lot number if you have an issue if you need the serial number of your Dexcom you know all this stuff. So if you don't have room to keep the actual boxes, and you're not a big like Ripper offer, a lot of people hate to keep those little strands of paper, you know, like I'll just shoot I'll rip off the front where it has all of the information or cut it out neatly. I don't cut anything neatly, I clawed off like an animal. But you could also take a photo, take a picture with your phone have the lot number and all of the information.

And that way you'll know what goes with what and that way if you have to call in a Dexcom replacement or you have a box of pump in sets that are not working correctly. You'll have the information in front of you and you can call it in it's all well and good to get organized. But if you can't see when you're running out of something, and then I know the people with little kids don't get it yet, but when your teenager uses the left decks calm and doesn't tell you and leaves The box in the storage area, right or uses the last pump inset, and just hasn't said anything. I didn't realize it was the last one. That's where the yoga and meditation comes in. So you can use these tips maybe to avoid those kinds of situations. And thanks again to Susan Wiener. I'll link up that episode to Gosh, I think it's about two years, maybe longer. Now, since we've talked, it was a great episode about getting diabetes organized. I love her.

Thank you so much for listening to this episode of Diabetes Connections. We have a lot of great stuff coming up. In fact, I have so much, I might have just more bonus episodes. I don't know I'm sifting through personal stories and sports stories and technology stuff. It seems like towards the end of the year, you know, we take a breath in August and the beginning of September, and then it's just a race to December. And that's how it's going this year. So I'll keep you posted. But please join the Facebook group. That's where I put most of my questions for you and pulling in that sort of stuff. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much as you listen, I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.


Benny  41:11

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

Sep 15, 2020

Jeanne Martin was diagnosed with type 1 diabetes at age ten, in the 1950s. Technology was very different back then, of course, but so was the medical community's reaction. Jeanne was told she would never have children and if she did, she wouldn't live to see her children grow up. Today, Jeanne not only has a daughter, she's also a grandmother. She shares what she’s learned along the way. We also talk to Jeanne's daughter Jessica, who talks about growing up with a parent who has type 1.

In Innovations, find out why when it comes to keeping track of long and short acting insulin, a CDE says invest in rubber bands.

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


Other episodes with amazing people living long and happy lives with T1D:

Richard Vaughn was diagnosed in 1945

Judith Ball was diagnosed in 1941


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

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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 Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.


Announcer  0:24

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:30

This week, Jeanne Martin was diagnosed with type one at age 10. Back in 1955. She's had to fight a lot of doctors along the way, including one who told her she would not live to see her child grow up.


Jeanne Martin  0:45

And my reaction was I told my husband that guy can go walk up the street and get hit by a bus tomorrow. I'm not going to go along with that. That's was my reaction. I got mad. I didn't buy into it. I didn't get depressed because I Just thought he was full of baloney.


Stacey Simms  1:00

Jeanne was right. She's now a grandmother. And she shares what she's learned along the way that made her question and stand up to doctors like that. We're also joined by her daughter, Jessica, who shares with like growing up with a parent who has type one

in innovations this week why a diabetes educator says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two that was back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get this show. I spent 20 plus years and local television and radio news.

I've been doing this show for more than five years now and I don't remember Ever putting the topic of the show to a vote, but I did that for this week, I put up a poll in our Facebook group, it's Diabetes Connections, the group, I have a couple of interviews. I'm usually a few weeks ahead with interviews in the can. And I asked the group to vote on which interview they wanted to hear next, and everybody chose Jeanne, I cannot say blame you. I am always amazed at the strength of these people, the stories of people who are living well with diabetes for 50 60 70 years. I mean, you think about it, before blood glucose meters were a thing. I mean, they weren't available to the 1980s. And this was a time that we're talking about with Jeanne before some doctors would even know about different types of diabetes. I was shocked to learn that that for a very long time, it was just diabetes and you treated it with a one shot a day, or then they would say juvenile diabetes. And you couldn't possibly have that if you were an adult and you're just on and on.

And if you're new to the show, I've done several interviews with people who were diagnosed in the 50s in the 40s. And they've lived with type one for 70 years. And I will link those up with this episode. You can also search with a very good search engine at Diabetes We're up to more than 320 episodes. So if you want to Google keywords like living long or 60 years with diabetes, that sort of thing. You can find that on the website.

Before I get to the interview. I want to read something that was sent to me it's actually a review on Apple podcasts. I'm really bad at asking for reviews and keeping up with reviews. If you want to leave one up man, I would love it. Whatever podcast app you listen on, there is a way to leave a rating or review. This one came in from Shelley. Now her name is not on this but I know who this is because we featured her. We featured her son in a recent show. So Shelley wrote I love this podcast so much. I learned so much from listening especially enjoyed the tech episodes with Dexcom and Tandem etc. As the mom of a newly diagnosed four year old. I have found much needed encouragement and tips for helping and thrive with diabetes. Also, cannon was excited to hear you mention him swimming in the lake. Surely thank you for writing that. Yeah, we talked about cannon she had sent a picture into the Facebook group about him burning off the glucose. She said swimming in the lake pan swimming is one of those ways where Benny used to just those little kids just swim with every part of their body. They used to go low all the time in the pool. It's a little bit different. Now you know, a 15 year old does not swim like a four year old. But surely thanks for sending that review in. It's always nice to get reviews like that. And if you like the show, truly the best thing to do is to tell somebody about it tell somebody in the diabetes community. That's the best way to get the word out.

All right, Jeanne and her story in just a moment but first diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth a glucose meter test strips lancets and your certified diabetes coach, subscribe today to get the test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes and click on the One Drop logo.


I feel like I've known Jeanne Martin for as long as my son's had diabetes. That's almost 14 years. And that's because while I have never met Jeanne in person, I have been friends with her daughter Jessica Graham for even longer than those 14 years. We met when Jessica was in public relations here in Charlotte, and I was working as a health reporter for a local TV station. And later we were on the board of our local JDRF chapter together. I cannot believe it has taken me this long to share Jeannes story. She is just incredible. I was able to talk to Jeanne and Jessica, about living well with type one for 66 years. Jeanne and Jessica, thank you so much for joining me. I've known Jessica for so long, but I don't know so much of this story. I'm so excited to talk to you both. Thanks for coming on.


Jeanne & Jessica  6:17

Thank you for having us. You're very welcome.


Stacey Simms  6:20

Jeanne, I got to start with you. Because you have lived with type 1 diabetes now for more than 65 years. Let me just start out by saying How are you? How are you doing?


Jeanne Martin  6:30

I'm doing great. I think I'm doing just fine.


Stacey Simms  6:35

What do you mind if I ask what technology you use how you manage anything you'd like to share?


Jeanne Martin  6:40

Well, I checked my blood sugar with little contrast test strips. And I shoot nice. Well, I take shots


Stacey Simms  6:49

you can say brands, we’re all friends here.


Jeanne Martin  6:51

Yeah, I say I shoot myself


four times a day. I see my doctor every six months. Well, that's about it.


Jessica Graham  7:01

She does not use a pump or


Stacey Simms  7:04

any of that. No, if you don't mind, let's go back. Do you remember what it was like when you were diagnosed? You were 10 years old. Do you remember anything about that time?


Jeanne Martin  7:13

Oh, yes, I do very much. We lived in a very small town, not far from the Mayo Clinic. We just lived there a couple years. My friend's mother mentioned to my mother that I was drinking a lot of water and going in the bathroom a lot and she thought maybe my mother should have me checked out. So we did in the small town with the with the doctor there said, Well, she's either got diabetes or TB. Well, I didn't know what diabetes was. And I knew what TB was. So I thought, Oh, please don't i don't want TB. I'll have the other and so so the little basically country doctor didn't know what to do. So anyway, so they sent me to St. Mary's, which is public Have the Mayo Clinic. And they tested me and for sure that's what I had. So I had to stay there. I think it was five years. I didn't do all this stuff with the diets. And they wouldn't let me leave until I could get myself a shot. But I was active. And I don't really remember too much about it. The doctor were very nice, and everybody was very helpful. And back then you had glass syringes and needles and you couldn't check your blood sugar. You had to pee on the stick, and they sent me home and my mother had to weigh everything, and I had to watch what I ate. But other than that, that's about it. Then I just basically went on with my life. Did you


Stacey Simms  8:46

really? Were you able to jump back in go to school, do all the things you wanted to do with that time?


Jeanne Martin  8:51

Yeah, I did.


Stacey Simms  8:52

Mm hmm. It seems like such a different time, right. I'm just trying to think,


Jeanne Martin  8:55

Oh, yeah, it was a very different time and when I first got married, Remember, I had to boil my syringe once a week, we had to do that. And I was still peeing on a stick. And I only had one shot a day back then all through, you know, school. And of course, I didn't want to tell my friends when I was in high school. That's what I had. But of course, my mother told my best friend's mother. So everybody knew it, but I didn't know they knew it. Oh, wow.


Stacey Simms  9:25

Anyway, moms are sneaky that way. But yeah. The you know, the regimen was so different. You had one shot a day, right? And then you had to kind of eat around that shot. Did you have problems as a teenager? Did you do remember, you know, any issues or were you able to buy I would assume by routine and by figuring out what to eat, you know, how did it work out for you?


Jeanne Martin  9:47

Well, I didn't run into any problems when I was a teenager. And I do remember I don't know how I would go not very often, my friends and I and I would have hot fudge sundaes. Believe it But other than being bad like that, I lived at home and my mother, kind of watch what I ate. And I didn't need a lot of sweets. You know, it was my mother's management, not mine. And I came home for lunch all during school. And I didn't start taking more shots until about, oh, I don't know, maybe 45 40 years ago.


Stacey Simms  10:23

Yeah. It's so different to think about because we're talking about I mean, if doing my math correctly, you were diagnosed right? In the early 50s 1950s.


Jeanne Martin  10:30

Right? And 1955


Stacey Simms  10:33

Yes, so the routine was completely different. I mean, as you're listening, you got to understand not only one shot a day, but no blood sugar home meters, right. You're still checking. How often did you check done by check? We mean, pee on the stick.


Jeanne Martin  10:50

I probably did it maybe once a day. I honestly don't remember that. Not a lot. It's very different now. And somehow, I think my pancreas has always worked a little bit because I don't take much insulin. And I'm very, I don't want to say touchy with it, but I don't have to take a lot. And when I was diagnosed at the Mayo Clinic, they said that yes, my pancreas was working a little bit. That's what they thought. And I still think that's the case because I just don't need much insulin. And and I watch what I eat. I do, but you know, I'm not 100% I mean, I do have cookies,


Stacey Simms  11:30

but you're told us you were eating hot fudge sundae. So the cat is out of the bag…


Jeanne Martin  11:35

That was in my youth. You know, I do take care of myself. Now. I check myself four times a day, shoot up four times a day and I watch myself better now because I know better. I'm more wiser.


Stacey Simms  11:48

I'm curious to growing up. Did you know anybody with Type One Diabetes and if not, when did you meet somebody with no,


Jeanne Martin  11:55

I never knew anybody. I didn't know anybody with any kind of diabetes. It wasn't in my family, so none of my relatives had it. No, during high school I did not know, as an adult. I have met very few type one diabetics, I know they're out there, but very few. And it's kind of fun when I do just to kind of say, Well, you know, compare notes, so to speak. Sure.


Stacey Simms  12:21

Just let me ask you a couple of questions. Because the perspective of a kid, you know, we're all adults now. But a child growing up with type one in the house and the type one is in the parent is not something that I've talked a lot about on the podcast. What's your earliest memory of your mom and diabetes?


Jessica Graham  12:38

Well, I don't ever remember it not being there. And that was more because I worried about her than it was her. There was never literally and I'm, I mean, this literally, there was never a day when my mom said, Oh, I don't feel well or Oh me, you know. My sugar is off, or I just don't feel good today, never. And so it was nothing that she did. I just knew that if mom started acting funny, I needed to get the orange juice. So I remember that I never had a problem with shots. And I think that's because I always saw you give yourself a shot. So it was just, it was always there. The other thing that I remember is that I was always told that it skipped generations. And so I do remember I don't even know if you remember this. But I remember at one point when I was little, I told mom that I didn't want to have kids until there was a cure, because I didn't want my kid to have type one. And I she got really mad. My mom never got mad. But she got upset at that and told me that was absolutely you know, the wrong attitude to have and that she had a great life and it didn't have any impact. And so that was the end of that but it was just always there. So just always a part of life. Jeanne, I'd love to hear your perspective. On when Jessica who now has a I want to say a tween a teenage Yeah, yeah. just turned 13 Yeah. Wow.


Stacey Simms  14:07

I want to hear your reaction Jeanne to when she said that!

Right back to Jeanne answering that question but first Diabetes Connections is brought to you by Real Good Foods. True story from my house. Benny came downstairs the other night, open the freezer door, looked in it close the door and said who ate the mint chocolate chip ice cream. And I had to say it was the I finished it off. Sorry, Benny. But they're Real Good Foods. Ice cream is really good. We had a vanilla chocolate and mint chip this last time I promised him I would buy more and I have to get the peanut butter kind as well. We haven't found the ice cream yet in our grocery store freezer so I get that online but our grocery store carries a lot of the meals and they are so good and super easy and basically just heat them up. If you have an air fryer. It's even better They have everything from pizza to breakfast sandwiches to bowls, these new bowl meals that are really nice entrees. Find out more, check out that mint chocolate chip ice cream for yourself. It stays frozen. They they package it up the right way. I was worried about that, but no need to worry should have known. Just go to Diabetes and click on the Real Good Foods logo.

Now back to Jeanne answering my question about her reaction. When Jessica told her she was really concerned about having children.


Jeanne Martin  15:33

Well, I didn't want her to dwell on it. And I didn't want her not to have kids. You know, it's so much more advanced nowadays. And there's so much more that they can do. And I always do hope for here. I mean, I've been hanging on that for a long time, but you never know, one of these days. No matter what your problem is. You just have to get along and do the best you can and get along with your life and not dwell on it. And I've never dwelled on it.


Stacey Simms  16:02

Well, I'm curious too, because now we know and I've heard that too. it skips generations. We know it absolutely does not. But I'm curious Jeanne, you know, when you decided that you wanted to have children? Did anybody try to talk you out of it? This was a very different time for diabetes.


Jeanne Martin  16:14

Well, I was told that I would have a hard time having a child. And so we put up for adoption. And we were waiting to hear and I went to the doctor and thought I had a tumor but the tumor was Jessica. So I thought, okay, so we said, you know, we were going to have a baby so we don't need to adopt and they said, Well, why don't you wait to see if everything is okay. And I said, okay, because the doctors told me that Jessica only had a 40% chance of being born alive. So we waited and she was screaming and kickin, so she was Fine. So we stopped the adoption because we didn't need two babies at one time. And I didn't see her for I think it was like two or three days. She was in an incubator because her blood sugar was low when she was born, but then after that, she was fine. And I was fine. And that's it.


Stacey Simms  17:19

I'm sorry. I'm still on the tumor.


Jessica Graham  17:24

Well, and I'll add to that, because, you know, she won't tell you this part, but because she was diabetic, she couldn't have any medicine or or painkillers. When I was born, and you were in labor, what, 24 hours? No, no,


Jeanne Martin  17:39

it was, I don't remember 13 hours. So it was a


Jessica Graham  17:42

ridiculously long and I was stuck behind a piece of cartilage. And so I wasn't coming out. So she went through hell delivering me. But it all worked out. Yeah.


Stacey Simms  17:54

Oh, worked out. things really have changed. I mean,


Jeanne Martin  17:58

Oh, yes. And I also was I would not live to see my child grow up. Now I've got a 13 year old grandson.


Stacey Simms  18:07

But let's talk about that, because I've heard that from so many people diagnosed not only in the 50s, but even as late as like the 70s and 80s. This Doomsday of you're not going to live past 30. And I know that for many people, that unfortunately was the case, there was not the care. There was not, you know, whatever they needed, but it seemed as though in some ways, the doctors, I don't know, I don't want to editorialize here, but they seem to have this Doomsday approach. And when you were told that Jeanne, what was your reaction? I mean, I think a lot of people would have said, well, what's the point? Oh,


Jeanne Martin  18:37

I'm kind of stubborn.


And my reaction was, I told my husband, that guy can go walk out in the street and get hit by a bus tomorrow, and I just, I'm not going to go along with that. That's was my reaction. I got mad and he did die. A younger The age that I am now is a matter of fact, the guy that told me that I didn't buy into it. I didn't get depressed because I just thought it was full of baloney. I love it.


Stacey Simms  19:10

All right, this is getting interesting now. I do love it. Jessica. I know your mom is sitting right there. But you're doing great Jeanne, obviously with with your shots and with your checking, but the technology has advanced. I'm going to assume, Jessica, that you guys have had a lot of discussions about this. And your mom has said no. And you're respecting that don't put words in your mouth. But I'm curious how have those conversations happened?


Jessica Graham  19:36

Oh, yes. And I don't mind saying it with her sitting right here. So I don't mind that she doesn't do the pump because I understand. I mean, she's had incredible control for 60 some years and so i don't i don't blame her that but I want her to have a blood sugar monitor because she tends to go away Low, and she goes low at night. And it's been a problem as I call it a problem. Whenever she goes low it to me it's a problem. And so while she keeps great control, and I mean, it's her life, right, and it's her decision to make, I wish that she would get some of that electronic help with the monitoring of it. So yeah, we have that conversation a lot. But I lose.


Stacey Simms  20:26

That's a difficult situation. You know, we, as parents of children with type one have these conversations, especially once there were certain age, and I'm going to say, as young as four or five years old, where it really has to be up to the person to buy into it and say, Yes, I want this technology. And I would imagine and I'm just imagining having this conversation with my mother, who I think you have a lot in common with with Jeanne. And I think it would go that well. Yeah, well stubborn, but also you're doing very well.


Jessica Graham  20:52

Yeah, and Exactly. That's why I mean at the end of the day, what am I going to do right now I can only put in my two cents but that that is is the one thing that I wish you would do. And my dad to his credit. I mean, he's kind of grown up with this too, right? And so he's a great monitor strangely, he knows when it's the middle of the night and she's having a hard time. But I don't like to rely on that.


Unknown Speaker  21:17

But again, I lose


Jeanne Martin  21:19

stubborn. Well, let me cut in here. But the doctor prescribed a new kind of insulin that I've been taking. I don't know six months now and I have not had any trouble at night. Oh, good.


Stacey Simms  21:32

We don't have to use it in the show. Are you taking Tresiba?


Jeanne Martin  21:34

It's Tresiba. Yeah. And I have not had any trouble at night. Since I've been on that. Yeah, that's a good thing.


Stacey Simms  21:41

But my son uses an insulin pump. But long story short, we had him on Tresiba with the pump for a while because teenagers use the most ungodly amount of insulin that you could imagine. He's coming out of it. So we did away with the trusty bow, but boy, it's like the best long acting we've ever used. I'm curious too, and the bridge kind of skipping around chronologically. Hear but I mentioned earlier that there were not blood sugar meters for home use when you were diagnosed. Do you remember when you started using one of those maybe the 80s


Jeanne Martin  22:09

Well, I thought it was great because then I really knew what was going on. I mean it just it was very helpful because and that's why I checked myself a lot because you can't guess how much it's I mean, you can guess kind of how much insulin but you really can't without knowing what your blood sugar is to my mind. I mean, I think that's what's helped me keep control in Yeah, I don't like to stick my fingers but I mean, I'm so used to it now just comes second hand to me, so it made a big difference. What really made a big difference to is having plastic syringes that don't have to boil. Tell me


Stacey Simms  22:49

more about that. When did that switch? Not Not Not necessarily like what year but tell me more about that. What do you remember kind of the transition? Did you just one day throw all the glass ones out? What happened? Right


Jeanne Martin  23:00

Yeah, I did. I guess the doctor told me that these were available. And so I bought them and and use them. And then you know, he used it, throw it out. And it just, it made a big difference. It's just like, oh, gosh, you know, this is getting easier. Well, and you know, it was a lot easier. I mean, it sounds like a small thing, but it was a no to boil, you know, syringes once a week and needles once a week. And so this was great.


Jessica Graham  23:28

When did you I don't remember you ever boiling? Was that in the 60s or


Jeanne Martin  23:32

70s? No. Well, I must know. I don't think when you were born. Other times, I must have used the plastic ones. Yeah. Because I don't remember doing that either. When you were born.


Stacey Simms  23:43

You know, Jeanne, it's interesting. You said it seems like a little thing. I think for someone who has my perspective. My son was diagnosed in 2006. When we basically have I think we have all of the technology. At least it was on the drawing board if not available at the time. It wasn't as good as it is now. Just 1314 years later, but it was there. And so to think about transitioning from peeing on a stick to a blood sugar, meter glass syringes, to plastic syringes, these are monumental changes. I don't think it was a little thing. I can't imagine how much of a difference that made. I mean, the needles had to even feel different. They were more comfortable, I assume.


Jeanne Martin  24:20

Oh, well, it was it was like one size needle with the glass syringes, and they weren't that small. And now, you know, you can get all different kinds of sizes. Jessica, do you remember growing up?


Stacey Simms  24:32

It sounds like your mom's diabetes was not front and center, as I'm sure she would not have wanted it. But are there any things that stand out? You know, when you were a teenager? I'm trying to think his parents are just super embarrassing to begin with?


Jessica Graham  24:44

Honestly, no, because it just my mom wouldn't let it be the center. I mean, you're absolutely right about that. She she would never have wanted that. And I don't remember there being anything that happened when I was a teenager. That was odd. She She had one episode. I guess I was a teenager when you broke your ankle. She was we discovered that she couldn't drink champagne. She had a glass of champagne. I mean, literally a glass and the next morning passed out and broke her ankle because it messed up her blood sugar so badly that I don't remember anything ever. Embarrassing or weird or no, not not at all again, I I remember when I was a younger teenager, like if you started acting strangely, I needed to get you orange juice like I vaguely remember that but and that went for anybody. Like I think if anybody started acting strangely, I would have ended them. Shoes. But


Stacey Simms  25:43

  1. Jeanne, did you have a career did you work? Did you work at home? Tell me a little bit about what you you know what you did?


Jeanne Martin  25:49

You know, I work during high school, I worked at clothing stores and I worked at a bakery. And then after school, I worked at a real The state office. And I guess that was it because it was the board of realtors, because I had to quit them when I got pregnant with Jessica. So that was it. And then when my husband started his company, I worked for him. I did the payroll and things like that.


Stacey Simms  26:19

Jessica, what led you to JDRF? I mean, we had met Previous to that, but we connected again at the Charlotte chapter.


Jessica Graham  26:25

I led community outreach for Harris Teeter, but didn't formally get involved. They were supportive of JDRF, but didn't formally get involved in a board capacity until I got to Time Warner Cable, and they were also involved with JDRF. And so I joined the board at that point, and was on the board for, I don't know, six or seven years, I think, and shared it in there. But I think I knew about JDRF through mom, like I think you just always supported them. Yeah, um, if I'm not mistaken, the world. organization was born the year I was born. Just another thing that has always been a part of my life. And I was really excited to get involved with the chapter because yeah, as you sort of already mentioned, the parents of type one diabetics are really involved. But there really aren't many children of type ones out there. There weren't at the time. It meant a lot to me to be involved and to be part of it.


Stacey Simms  27:24

I'm just curious, your mom, Jeanne, you just seem so laid back. And I've talked to several people who have lived with diabetes for this long who are I want to say relax, because obviously you're not, but who are more of the, hey, I'm taking care of it. We don't need to talk about it. You know, I'm not surrounded by people with type one. And then there are people who are younger, or we've been diagnosed more recently, who are really a big, big, big part of that community and want and need to kind of breathe that air. And I was curious, Jessica, was it surprising for you to kind of be involved in JDRF and be around people who were more like well, I am talking about every day and I am going to tell you more about it.


Jessica Graham  27:58

Yeah, I mean, it was it was definitely Different, because that's just not how it was in my house. I mean, it wasn't a big secret or anything. But Mom definitely didn't advertise it. And it certainly wasn't part of her identity. It was very, very different. And I really loved to one be involved that I really loved getting my mom in that community, like I would take her to the gala and that kind of thing. And she really is such an inspiration to a lot of people, especially those who are newly diagnosed because they can see somebody who really, I mean, has had a full, long, wonderful life with it. And so it's not this Doomsday message. And so she's really, I think, a real inspiration for that. And I think too, she's a great inspiration for how important attitude is an outlook is because she's never let it define her and she's never really Let it limit her. And I think she's really inspirational. So yes, it was very different to be around different people with it. But also it was really exciting to just to be able to share her with that community.


Stacey Simms  29:12

Jeanne, what's your reaction to have your daughter sitting next to you and saying, what an inspiration she thinks you are?


Jeanne Martin  29:17

Well, I think that's very nice. It's very complimentary. I never thought of myself that way. But I'm glad she sees me that way.


Stacey Simms  29:26

I know my listeners are going to want to know, a few more little details. Jeanne, do you exercise a lot? Have you always been active? Are you more kind of laid back about that too? You know, that's one of the things that people always ask me about.


Jeanne Martin  29:37

No, I say I'm pretty active. Well, since we've lived here almost the whole time. I would go to the why three days a week. I don't do that now because I suppose and when I was younger, I played golf, and did a little bit of tennis. I've always gardened Well, not always but for a long time I went out in the They are dug in the dirt and that type of thing. And I try to walk about a mile a day. I mean, I walk more, but I go for a mile walk, or more. I tried to do it every day, unless it rains. I do it early when it's hot, because the heat affects my blood sugar. I run into trouble easier. And I don't know if that's the same with other people. But anyway, that's what it is. Yeah, I think I'm pretty active.


Stacey Simms  30:27

Yeah, you're very active. Jessica, I'm curious, have you. You mentioned that you were worried about your son having type one and he's 13. Now, do you still think about that? It's in the back of your mind. Is it something that you've ever had checked out? Anything like that?


Jessica Graham  30:41

Um, yes. So I worry about it every day. But I don't


I try not to think about it. And I certainly have never mentioned it and


Unknown Speaker  30:49

we had


Jessica Graham  30:50

it chat once and I forget why you've charged it. Yeah, maybe. Maybe you were the one anyway. I feel like I had it checked once and I don't remember why maybe he was thirsty that day. But I do worry about it a lot. And I mean, literally every time he says I'm thirsty, because I'm just a little neurotic that way, but I don't talk about it at all. Like he would have no


Unknown Speaker  31:14

idea. I don't


Jessica Graham  31:16

think anybody would know that. But yeah, I worry about it a lot. But then again, I think, well, if he ever were to develop it, oh, my gosh, he has the world's greatest teacher to help him navigate it. So that puts my mind at ease. When he was very, very small. I found a test that he could have done. It might have even been when he was born. I mean, it was he was really, really young. And I think it was down in Florida, talking about TrialNet Yes, that must be what it was. And we just decided


Stacey Simms  31:49

not to do that. And I think I talked to you about it and talked to my mom about it. And she, I think suggested that we not do it and I decided not to so Well, Jeanne, let me then ask you about that because you would, as Jessica said, you know, he would have such a great role model and teacher, God forbid something would happen like that. So let me just ask you, what would your advice be for a newly diagnosed adult or a newly diagnosed family facing something like this now in in 20?


Jeanne Martin  32:19

Well, it depends the age of the kid. I think when you're a teenager, I think it is be harder on the kid because, you know, you don't want to be and maybe it's because I'm a girl and maybe it's back then you don't want to be different. I mean, you know, you want to blend in as a teenager, you don't really have enough self confidence to just say, Okay, I've got this and I'm gonna deal with it. I mean, I'm not saying that kids don't but I would think that's a harder age. But I guess I would just be very positive and all the things that can help. At the same time, it was would be your his responsibility to see He does try to do what he should do with diet and exercise and taking this medicine. I have a niece who came down with it when she was 10. And she never did well with it. She didn't do what she was supposed to do. And over the years, she's had all kinds of complications. And she just got very depressed with it. And you have to be positive. But you the kid himself, has to take responsibility for himself to do what he should do. And I strongly believe in that.


Stacey Simms  33:36

Thank you both so much for joining me today. It was amazing to learn about your story, Jeanne, and I'm so glad, Jessica that we were able to do this. Thank you for being on the podcast.


Jeanne Martin  33:45

Thank you for having us. Yes, thank you. It was nice meeting you via the computer.


Announcer  33:55

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  34:01

I shared some photos in the Facebook group that Jeanne and Jessica sent me, I was so happy to finally get a chance to talk to her. And you know what, after that interview, she sent me an email with some advice for Benny, which I thought was really, really nice. Now he is, as you've heard him here on the show, he maybe he's a little too confident, but he's very independent and very confident. But Jeanne has some really nice words just about you know, not letting diabetes stop you and keeping a good attitude that has served her well. And I really appreciate that she took the time to do that this community is just great.

All right, innovations is up next. And we have a very low tech solution to a very scary problem. It has to do with rubber bands. All right. I'll explain that in just a moment. Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. So trust me when I say using share and follow apps make a big difference. I made a lot of people who don't realize that when Dexcom launched you could not see numbers not only on your phone, but you could not share than with anybody else. But now it's such a great system. And Benny and I set parameters about when I'm going to text him or you know how long to wait all that it helps us talk and worry about diabetes less when he is at asleep over or goes on a trip. It gives me peace of mind. It also helps if I need to troubleshoot with him, because I can see what's happening over the last 24 hours and not just one moment. The alerts and alarms that we set help us from keeping the highs from getting too high and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes and click on the Dexcom logo.


As you know I am the queen of diabetes mistakes I wrote a whole book about why I think mistakes are great. It's the world's worst diabetes mom real life stories of raising a child with type one. But I will say that making mistakes is also incredibly scary at times. And the one mistake that I think almost everybody with time wonder who's a caregiver for someone with type one has made is mixing up the long acting and the short acting when you're on MDI, whether it's the beginning or you've been doing this for a while, I've been enough Facebook groups where I see this happening. It's once in a blue moon for the individual. But it seems like almost every week somebody is coming in and saying, Oh, my gosh, I did this. I'm so scared. What do I do? Right? Well, one of the best tips I ever heard on is so simple. And I heard it from a CDE.

And I'm so embarrassed that I don't know their name. And I'm so sorry, if this was you, email me Stacey at Diabetes And I will give you credit, but what you do is this, whenever you have a new vial or a new pen, have long acting and do this on the long acting only take a rubber band and wrap it around the pen or the vial. Just wrap it around a couple times. You know, make sure it's not loose, it's not sliding around. And then every time you pick up your long acting, you will know that it feels different. It's got those rubber band bumps on it and If you do this often enough, really doesn't take that long, maybe two weeks, your fingers will start to associate that feel with the long acting. So if you make a mistake if you accidentally grab the wrong pen, your hand and your brain will instinctively know that something is wrong. Now, this is not proven. I haven't seen any studies on it. But this is advice that was given to me that I've heard other people use. And it really does make sense.

It is incredible that after all this time was different kinds of insulin, that the pens are pretty much exactly the same. The Lantus vial, I remember might be a little skinnier, right? It looks a little bit different. But when you're moving quickly and automated, like a lot of us are, I mean, I could do that Tandem cartridge in my sleep, whereas when we first got it, I thought, oh my god, this is so complicated. I've got to lay everything out on the table. We did the Animas pump for 10 years, I could definitely feel that thing blindfolded. You just get used to your routine and how things are Feel so if you just wrap the rubber band around the long acting, you will get used to the feel of it.

Let me know what you think. Does that make sense to you? Has anybody tried that? And if you've got an innovation like that This segment is for everything big and small. That makes living with type one just a little bit easier. Let me know I would love to hear from you.


Just a little personal update before I let you go, this has to do with insurance. We've had some employment situation changes around my house, which means I have already spent far too much time on the phone. I decided to start taking advice from one of our previous guests from Melissa Lee, who said when you have insurance issues, you should start with the diabetes companies and work backward. So I called Dexcom and Tandem and I said hello, I have changed insurance. What do I need to do? And they were very helpful. The bad news is my new insurance means we have to order from a third party supplier and it's Edgepark. Edgepark. If you're listening, please, please handle this.

Well, we were with Edgepark years ago and I hate to disparage anybody. But let's just say let's turn this into a positive. I felt that it was such a gift for the last five and a half years to order directly from Tandem and directly from Dexcom. I am sad to see those days in my rear view mirror. So I will keep you posted on how it goes. I'm currently as I'm recording in the limbo of an Edgepark representative, we'll get back to you. We have plenty of supplies. I have a great support system if I need anything, so I'm not worried about Benny. But man, although I'm a liar, because I did say to him, you know, before you rip anything off your body, so bad before you take off that sensor or that inset, come talk to me, and make sure that it's okay to do so. Isn't that terrible? I mean, I'm laughing because we really are fine. But it just makes me crazy how expensive this stuff is, and how difficult the process is to order what you need. So I will keep you posted on that. Hopefully, it'll all go smoothly. But this is not my first rodeo. So I'm anticipating navigating a not so smooth road. I'll let you know.

Thank you so much to my editor, John Bukenas from audio editing solutions. Thank you all so much as you listen, I'm Stacey Simms. I'll see you back here. Next Until then be kind to yourself.


Benny  41:07

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

Sep 8, 2020

When Shaina Hatchell's little brother was diagnosed with type 1 at age nine, she knew her life - and her life's goals - had changed forever. She decided she would teach everyone about diabetes when she grew up.

Now a registered nurse and certified diabetes educator, Shaina has written "Shia Learns," a children's book to teach families about diabetes. In this episode she shares her story and answers listeners questions about teaching kids with T1D all about acceptance. Watch Shaina's JDRF FB Live here

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

In Tell Me Something Good, cheerleaders and a lot to cheer about and.. our newest segment.. Innovations.. new studies and approval for the latest hybrid closed loop pump systems. ..

More information here about Semglee insulin

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

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Episode transcript:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.


Announcer  0:21

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:26

This week when her little brother was diagnosed then 12 year old Shaina Hatchell knew her life and her life's goals had changed thanks to their diabetes educator.


Shaina Hatchell  0:38

It was in that moment of her teaching my entire family teaching me allowing me to trial everything that I realized like this is what I want to do with my life. So at 12 I already was telling my mom, I'm going to be a diabetes educator one day because I loved it so much. I love learning.


Stacey Simms  0:54

Shaina is now a registered nurse and a certified diabetes educator. She's also the author of a new children's book about type one. And she's answering your questions about kids and T1D

In  tell me something good cheerleaders and a lot to cheer about, and in our newest segment, innovations, new studies and approval for the latest hybrid closed loop pump systems. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I am so glad to have you along. If you are new Welcome. My name is Stacey Simms. I'm your host and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. He's a sophomore in high school. So we've been doing this for a while. My husband lives with type two. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast and I'm laughing a little bit because as I was recording that, I don't know what I said, but I activated the Siri I just said it again on my phone, don't say anything, okay, didn't activate it. And he started talking. So if you heard that I apologize. But it's funny sometimes.

And I promise I'll get to the guest to the diabetes stuff in just a minute. But I was talking about my radio days recently, I worked a long time in radio, and I'm taking part in a podcast festival, a virtual podcast Festival, which is all about learning and sessions and panels and stuff, kind of like diabetes festival, or I guess, more like a diabetes conference. But it's all about information and podcasting, and we were talking about my time in radio. And it's amazing to me to think about how many people worked on that show that I was on. I did a four hour morning news show with a co host and a sports guy and you know, reporters and lots of moving parts and running around this little studio. But we had sound engineers and we had producers and you know, we had interns that we had so many people working on that show. And so to do a podcast, of course is usually I mean unless you're NPR or You have a lot of corporate power behind you is usually a one person or maybe a two person show. I do have an editor who helps me out after the fact. But it's when little things happen like my phone going off that I remember those days. Not that I'm really itching to go back to spending five hours because we did also have an hour show prep in the studio, which was the size of the room that I'm in right now about the size of a, let's call it a standard bedroom with four or five, six people every day, starting at four o'clock in the morning. So I can't say I recommend that. Oh, my goodness, sorry to get off on such a tangent, but I am taking part in the Charlotte podcast festival. If you're at all interested in podcasting, I will link it up. I'm sure you could attend. It's free. And then later on in the show, I'll get back to diabetes conferences and tell you what's on tap because there's some interesting changes happening. Of course, everything's still going virtual, but some new announcements and I will get to that a little bit later on in the show.

Okay, Diabetes Connections is brought to you by One Drop, and I'm really impressed at how much they just 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 One Drop diabetes care delivered. learn more, go to Diabetes and click on the One Drop logo.

My guest this week is the author of what is meant to be a series of books for children and families about type one. The first book released is called Shia Learns, author Shaina Hatchell is a registered nurse and CDE and her brother was diagnosed when he was nine. The book is adorable the illustrations are really top notch. It's gorgeous. But the substance, of course, is what this is all about. Shaina talks about her family's story. And she answered some listener questions that you sent in about kids and type one. And she gets these kinds of questions every day in her practice. She meets a lot of new onset families. She talks about that and a lot more. Here is my interview with author Shaina Hatchell.

Shaina, thank you so much for jumping on. I know, it's been a really busy time for you with the pre sales, but the book is out now. Thanks for spending some time with me.


Shaina Hatchell  5:32

Thank you for having me. I'm so excited and it's been busy, but I couldn't miss this interview.


Stacey Simms  5:37

Oh, thank you. All right, let's just jump right in. But we'll talk about your background and your brother and everything. Let's start by just talking about the book itself. What is Shi'a learns, tell me the story of the book.


Shaina Hatchell  5:50

Oh, right. So I have been wanting to write a book that does some sort of diabetes education for many years, even before I became a diabetes educator, there have been a lot of experiences that I've had in my home with my brother and my parents that I felt like when we were going through certain situations, it would have been great to have a book that would have kind of given us a little bit more guidance, because we only see the doctor every three months. So now that I had the time and I felt like you know, I had enough knowledge to really create what I wanted to create. From the beginning I decided to go ahead and start writing some books. And in the beginning, Cheyenne learns wasn't the title was just me writing honestly, more so like poetry style books about diabetes education, because I love poetry, and then it kind of just dawned on me like okay, this is turning into a series and this should be about a child and let me just go ahead and title it Shai learn. Shi'a is the name of a child that I lost during gardening. decided that, you know, this was another way for her to be bored. And then just having her be the title of the book she learns, which is actually perfect for me. So the reason why I wanted to make her a young African American Girl is because I wanted to help with the disparities and care that some African American face. And I do that by increasing education with the book in the topics that will come in not only this first book, but the books to come, as well as increasing representation. So that is the reason why we're starting with preDominantly African American characters, but that is going to grow, because I want everyone to feel represented in these books,


Stacey Simms  7:39

a lot to unpack there. But let's start with the book itself. That first, as you said, it's a series what's the story of the first book? Is it her diagnosis? Your take me through it?


Shaina Hatchell  7:49

Yes. So in the first book, it's actually going to be explaining in following Shia and her parents in their journey for a new one set in the hospital. So basically in the first one Shia is going to start to have some films that the parents notice are not normal. And so they take her to a hospital. And mom explained to the providers, what she's been noticing about Shia. And then they do a couple of tests and they diagnosed her with type 1 diabetes. Then in comes the diabetes educator Dom who will start to explain to the family, you know what type one diabetes is how insulin works in the body, and give them everything they need for discharge. So it's literally just that first story that anyone who has a loved one with type one or if they're the type one themselves, have experienced, you know, that first new onset experience.


Stacey Simms  8:45

I gotta say, the illustrations are just beautiful, but one that caught my eye. Oh, yeah, one that really caught my eye is the depiction of insulin as a key, right where we're explained a lot. Can you take us through what that illustration is showing, and I know As you're listening, I'll put some things out on social media and in the show notes, you can see these photos. It's an adorable depiction of what insulin does.


Shaina Hatchell  9:08

Yes. So anytime I educate because as a diabetes educator, I do preDominantly new onset education. So this first book is literally what I teach almost every single day. And when I'm explaining to families, what insulin does in the body, I always draw the picture on the board. And so I sent this to my illustrator and she did an excellent job. Thank you, Candace Bradley, you did an amazing job in actually bringing this to life. But what I always say is that when we eat carbohydrates, we eat food that has sugar. So your carbohydrates are even if we had like a regular juice or soda, which is sugar in the simplest form, you know, the carbs broken down in the stomach turn into sugar and then the sugar that pure sugar goes to the bloodstream. And when there's more sugar into the bloodstream, the body sends a message to our pancreas that sends a message to our body. To sell to release the insulin, and insulin is the only key that can unlock ourselves so that sugar can go inside and be used for energy.


Stacey Simms  10:09

Our endo use the exact same analogy with the key and I I wish I had a book like this to show my two year old. I don't think he even has that analogy in his head to this day. Tell me a little bit more about your story. Your brother was diagnosed when you both were kids that has to have influenced you. What do you remember about his diagnosis? He was nine.


Shaina Hatchell  10:28

Yes, he was nine and I was 12 years old. I remember when he started to lose weight. And I remember when he started to drink a lot of water and go to the bathroom a lot. And that was probably for like, I want to say two weeks before we my mom, I say we but I was too young to be a part of that before my parents decided that they needed to take him to a doctor's appointment, but I remember just seeing him like the weight and then at nighttime, he started to put sheets from off of It started with sheep into his pants into his pajamas. So that if he went to bed while he was sleeping at night, it would like be on the sheets and not all over the bed. And I remember like, of course, as an older sibling in older sibling fashion, like making fun of him about it. And I think that's when my mom was alarmed because my brother was upset with me. And I told her why he was upset. And you know, I made a joke. And then I went to school. And when I got out of school, I got in the car with my mom. And usually my brother was first to be picked up. So I was expecting him to be in the car with us. But he wasn't and my mom was sitting and says, We're on our way to the hospital, your brother is in the hospital. When I got there. I just remember being really confused and feeling really bad about the joke I made and learning that he has type one diabetes. My family had never heard of a kid being able to get diabetes. And we had no idea that this was even possible for our family because we didn't have a family history of it. So we were kind of confused and then we of the day, the next day was a diabetes educator who explained everything. And it was in that moment of her teaching my entire family, teaching me allowing me to trial, everything that I realized, like, this is what I want to do with my life. So at 12, I already was telling my mom, I'm going to be a diabetes educator one day, because I loved it so much. I love learning.


Stacey Simms  12:22

But today, kind of pat you on the head and say, Sure, sweetie, are they Yes, we understand. And this is


Shaina Hatchell  12:27

something you're gonna do. My mom is like, amazing. She actually is like, Yeah, well, you know what? We need you. So yeah, you do this when you get and it was like it. From that point forward. It was kind of like a thing like Shay is going to become a nurse and she's going to be a diabetes educator. And I went to vocational high school and got my LPN at 17. And it was like, we're gonna make sure you get there. So they were actually super supportive from the beginning. It's fantastic.


Stacey Simms  12:56

And your brother is in the book, right? Am I he's one of the characters


Shaina Hatchell  13:00

He is he is a diabetes educator. So Dom is his actual name. And Dom is the name of the diabetes educator in the book. And he is the educator, because he taught me way more about diabetes management in the home and you know about diabetes in general, and how it affects the person then, than anything I've learned in any textbook or any other experience. I got that firsthand knowledge directly from him. So it was only right that he'd be the educator in the book.


Stacey Simms  13:31

You know, you you talked about how you want more representation for the African American community. We want to see more black characters in these books, and curious, there's so much misunderstanding, even in the middle community about diabetes and I hear stories of people who are Latino who are black, who have been told you can't have type one, you have type two, or you know, you don't understand what's going on. It just seems like there's a lot of medical disparities. Do you recall the Did you and your brother face that When he was being diagnosed


I know right back to our chat but first Diabetes Connections is brought to you by Real Good Foods. Real Good Foods is all about making delicious foods you feel good about eating high in protein, low in carbs and always made from simple real ingredients you feel good about eating. their newest products include these bowls they have these great meal bowls, Mongolian beef, lemon Chicken, Chicken lasagna, all low carb and in a handy little bowl. You can get all of their items delivered or find out where to buy. They're in our local Harris Teeter I know they're in the Walmart here as well. And you can find that in their store locator right on the website. While you were there. I highly recommend you get some ice cream. They do a great job of shipping the ice cream I was a little nervous about that. But it comes fully frozen. They do a terrific job and it is so good. My whole family loved the peanut butter I am always partial to chocolate and I thought the mint chocolate chip ice cream was top notch. Find out more go to Diabetes and click on the Real Good Foods logo. Now back to Shaina answering my question about whether there were any questions of the doctors minds that her brother had type one.


Shaina Hatchell  15:22

So when my brother was diagnosed we didn't face that. Personally, I think that his signs were pretty clear that this was type one. There was never a question for type two. But this is something that people of color do experience and I do have a friend of mine that she started to have the increase in, you know, thirst and urination and all of the crystal clear signs. She is an athlete, very thin and always healthy. And she went to the doctor's when she was experiencing these things and she was older and they automatically put her on That format and told her this was a type two diabetes, they didn't even try to test to test her for like any sort of type one. They didn't do any antibodies, any labs. It was just this was a type two diabetes because you are an older teenager, and you're African American, like that's what this is. And of course it ended up being type one. And so seeing her experience that and the frustration of thing I'm taking this Metformin on eating healthy, I'm exercising like you asked me to, and I still don't feel good. And not being heard initially was it was very difficult for me to see that because you know, me, I'm like, No, I know my brother is like, no, it's not it's got to be. And so to know that, that is an experience that many people of color with diabetes have is heartbreaking for me. And so just for like, if there are books that are available, that people of color that do not have diabetes at all can read, that will give them more of an understanding of what is happening in the body of someone with T1D, that if they see someone experiencing it their cousin, family member friend, that they'll be like, Oh my goodness, this is what I read in this book when I was a kid. And so you should ask them to check you for type one diabetes, or you know if they're experiencing it themselves, but they'll think you know, what I remember, these were the things that were talked about in that children's book. And so I should definitely be pushing more toward them. Checking for type one specifically, I


Stacey Simms  17:28

can't tell you how many listeners I have who diagnose themselves because of the baby sitters club books. So you know, it does work. Right. Exactly. It really does. So my listeners had some questions for you, if that's okay, if I could jump in and ask some advice questions, because you do work with families. Thank you so much for letting us do that. So I like this one a lot. Um, Valentina asks, how to handle remarks about what it is that you eat. She gets asked, What is that on your arm? Why do you get to keep that Your phone and nobody else can use she feels overwhelmed by the questions her friends are asking any ideas to help kids deal with that?


Shaina Hatchell  18:07

Yeah, you know, that can be it can be overwhelming to constantly get these kinds of questions. And so a part of why I created the book is that this will be something that children again, not living with diabetes can read, and start to understand a little bit better what's happening to their friends. And so being able to give them a book that is entertaining, that has these, you know, great illustrations and allowing them to read this content will help to decrease the questions, right, because there'll be able to get some of those answers in the book. But the other thing really starts in the home with the parents and the child. I find that the same way that we prepare for job interviews, adults, prepare for job interviews, we look over the questions if we can, you know, we have them and we think about the best ways to answer them so that when we are in that interview, with Parents, and we feel less stress and less anxiety because we prep for these questions is the same way that family should look at how they can prep for questions that may be x, you know, of their child or you know, is a child of yourself. So I think that it's really important for parents to sit with the child and say, Okay, let's talk about the kinds of questions that you might get asked, let's talk about what you would say if someone actually why you get to have your phone, or let's talk about the kind of answer to the question of why you're eating certain things or what's that when your body? How would you like to answer that, that way the parent can hear the child's response, and maybe there is some uncertainty and help really guide how that answer will be. A lot of times children are diagnosed and I know this because I do it. Sometimes, you know, you try to involve the child but depending on the age, maybe the child isn't as involved. And so as they get older and they start to understand a little bit more what's happening in their body. Sometimes the parents have those better answers and have never thought about having that discussion, you know, because the child's had diabetes now for, let's say, five years. So we think, you know, they understand but the reality is that the real understanding is with the parents who was really alert and and listening to what was happening from the beginning. So I think that that's really important.


Stacey Simms  20:17

That's a great point. I'll reach back to my son. When my son was diagnosed, he was only two. So he learns nothing, right. We learned to ride a bike. He used to say, when he had something your question, I don't know, his friends asked him a question, or they just pointed out or pulled at it or whatever. And he would say, that's my diabetes, you know, leave my diabetes alone. got older, we would teach him and he had different words for it. Now he's 15. And he has actually told people you know, hey, that's Skynet. I'm robot controlled. It's a tracking device. I mean, 15 year olds are a little bit more snarky. I would not recommend that. That's what you teach your children to say they will come to that themselves, but that's good advice you do you kind of roleplay and talk them through it. And it's okay to say it's a medical device. Leave me alone. In a polite way,


Shaina Hatchell  21:00

of course, of course, in a polite way, and just being able to be prepared for those kinds of things, and from some people are not ready to talk about it. And that's okay, too. I think that it is also important to understand that it's okay to just have healthy boundaries and say, you know, I just, I don't want to talk about that. Please do not touch it. And when you're ready to have that conversation, that's all right to


Stacey Simms  21:24

another question was, and it kind of goes hand in hand. There are children. And as you said, there, there are children who don't want to talk about it. My son is very open. We're so lucky that way. But there are kids who don't want to, and they get embarrassed by it. How do you help children get over that feeling of I don't want to call it shame. That's a bit of exaggeration, but they're more private. They're a little bit more embarrassed by diabetes.


Shaina Hatchell  21:45

It's actually funny that that's a question. So I like the liaison of my family and my brother, Matt, very fond of being open and talking about diabetes. Honestly, growing up A lot of his friends did not even know that he had diabetes, it's just not his thing. And he will even say it to me now, like, you know, this is not just not my thing. Like, you know, it's not my family like talking about it, I'm like, okay, you know, I think that it's just, again, I feel like everything starts in the home, if you make them feel comfortable and confident in it being okay that they that want to share all of the information that does help you know, them establish again, really healthy boundaries at school, building healthy boundaries with with friends, but I also feel like the war that we normalize conversations about diabetes, the more that we normalize, discussing, it's kind of like a kid with asthma. I'll give this example because I grew up with asthma. And I remember as a kid, my inhaler, having my inhaler, having to give my inhaler to my teacher at the beginning of class, and I remember you know, all the kids, we had our inhalers and baggies or names and we would just hand them over and no kid thought twice about it because there was a normalized conversation about being a child with asthma. So, kids Oh, that's your inhaler, because you have asthma, okay? My friend has it or I saw something about that, or my mom talked to me about that. And it became just so normalized that there was, I didn't feel ashamed, you know, I kind of felt a sense of pride in like handing over that inhaler like, yeah, I'm one of the special ones. What I have.

And so I think that if we have increased in the type of content that talked about type one diabetes, I think we'll see that kids will feel a little less shy about it, because it's going to be normal conversation to have so with me creating these books, I'm doing a lot of marketing to people that are not living with Type One Diabetes, I'm trying to market it to children in general so that it becomes more normal to know someone that has type one diabetes, I tell people all the time, you probably have met someone or you know someone or your your waiter or waitress, or somebody that you've encountered is either living with type 1 diabetes, or someone really close to them is, and so it's closer to home than we think. And if we start to have this be something that we just talked about, as usual, it really does decrease that feeling.


Stacey Simms  24:16

Yeah. When my son was in elementary school, especially for the younger kids, they used to always ask, you know, for your kid's birthday, maybe don't send in cupcakes send in a book. I mean, this was not because of diabetes. This was just because we had great teachers. I loved that. And so we would always send in a book about diabetes, like, um, you know, one of the Lilly diabetes books, or one of the books that we enjoyed is when Benny was little, and it was always a really popular book for other kids in the classroom. You know, they keep it a little classroom library and the other kids would bring it home and I would get emails from parents, like, Do you know my child brought home Is this okay? It's like, yes, it's for them to read. It's not like it's book like they didn't take it from him. Oh, my goodness. Okay. So let me ask you another diabetes educator type question that I get all the time. The tech analogy is wonderful, but it can be overwhelming. Especially I think when a family is first diagnosed and just trying to learn the basics, how do you kind of coach your families and educate them through, you know, they're gonna go home and get on Facebook and everybody's gonna say, you've been diagnosed for three days, get it on Dexcom get control, like, you know, get this one. So how do you get you deal with that?


Shaina Hatchell  25:21

That's a really good question. So one thing that we used to do so before working our children's national I worked at Children's Hospital of Los Angeles as a diabetes educator. So I have been on both the West Coast and East Coast with diabetes education and one thing that is the same as that, you know, for someone who is newly diagnosed if they want to start to look into technology, they have had to have been living with Type One Diabetes for a minimum of three to six months, give or take. And so that was kind of like a thing at Children's National but we've been actually just made a change where, of course what for insulin pumps is still three Next month, because you really need to know the basics before you can hop on to that kind of technology because it's man made. And if an insulin pump fail, you have to know how to jump right back into your manual mode. And so for that one, we still make it the same. And we tell the mat at New onset, like, Hey, you know, I know you might read some things about insulin pumps, but this is definitely something that we would discuss further with you, after your first follow up appointment with your endocrinologist. And then even then, you know, you have to have a conversation with them. And they may not think it's time yet, because honestly, influent pumps is a lot more work when you think about it and making sure that you understand again, how that pump works. And also remember, you know how to do things in manual mode, just in case things don't work with the pump, but as far as continuous glucose monitors, what we've started to do is really introduce it at New onset. If the family is really interested in it, or they know someone that has a CGM and they've already heard about it. Then we will introduce it It'll tell them that it was linked to them things. And the family then is calling every single day. So we might start the process of them getting a CGM at new one set. But of course that took time insurance has to approve it. There's so many different steps. And then after it's finally approved, and it's sent to the home, we have been talking to them every day on the phone. So if they had more questions about it, they have plenty of opportunities to discuss it with a nurse practitioner who was also looking at how their blood sugar's have been. And then once they receive it, they have to go through an entire class, either myself or another CDE. We will do a class with the family before they put it on, and really teach them everything about the CGM.

So I just think that those technologies take a lot more education a lot more understanding in the very first day is always sounds great for families, but then once they start realizing how much more work is entailed with it, how much more they need to know about it. They either decide to go ahead, let's continue move forward. Or they might say you know, nevermind. The other thing is like the kids usually don't Feel that great and it sounds good while they're in the hospital because it sounds like something that'll take away them having to do finger sticks. But when the child is actually feeling a lot better realizes that this is a device that's going to be on their body for days, sometimes, not all of them. But sometimes the kid decides that that's not something that they're ready to do yet. And that's okay to sort of make sure I always tell families like, this is not like if you decide to start the process of getting a CGM. That doesn't mean that you have to wear it, it doesn't mean that it becomes the only way that you can do things, you know, the manual way we've taught you if you have your meter if he or she decides that they don't want to have that on their body, even if they've had it on for three months, and they just say, you know what, I just really don't like it. Take it off. It's no love loss. It's totally okay. And they can always come back and visit it later. If they like.


Stacey Simms  28:50

Going back to your book. I know that you've been in pre sales for a while and you've got some reaction to it. It's about to kind of go as we're speaking it's about to go live. What has that The reaction been hasn't been what you hoped.


Shaina Hatchell  29:02

It has been beyond my hopes and dreams. When I created Cheyenne learned, and I thought about combining my love for poetry with my love for diabetes education, I thought it would be more of like a local thing. I thought that people that knew me were kind of spread the word around the DMV area, maybe you know, Delaware, which is where my family is that Philadelphia, which is where I'm from, I thought those areas would take a liking to it and it would kind of just be there but it there are people that I have never met. There are people all over the world that are buying this look at pre sale and sending mixed messages and are so excited and that just makes me feel great and not for the sales or anything like that. But truly because I know that Cheyenne learns about insulin is going to be a book that really reaches people and really accomplishes my goal far better than I do. Did it to do so. I'm grateful. I'm really grateful and excited.


Stacey Simms  30:04

So let me ask you and you mentioned right at the beginning of our interview, that Shia is the name that you were planning for your baby and you had a miscarriage. We don't talk about miscarriage at all. Right. And I was not going to ask I feel like I'm prying but I also you named the character after her. So I hope you'll forgive me for being nosy or prying. But was it hard to make that decision to use that name that means so much to you? Tell me just a little bit more about that if you don't mind?


Shaina Hatchell  30:34

Oh, I don't mind at all. I am so open about having this conversation. And even in the acknowledgments, I mentioned that she's you know, shy is now my rainbow baby. She's born she's here. So for me naming the book shy learned was like this is it I have talked about since I was young that like, Oh, I'm gonna name I could show you because my name is Shaina. And it just felt right back. About his name Shia for years for years and so when I found out that no I was with child I was pregnant. I was like, Oh goodness Shia and it for me, it didn't matter if it was boy or girl like the meeting was shy like this is it. And so once I miscarried, I was actually in the middle again of writing the books in like poetry form and so it just kind of like dawned on me like, Okay, this is it. This is how Shai is supposed to be born. This is how my baby is supposed to be put into this world, I kind of felt like it was destiny, that shy of the birth a different way, you know, and so now, Shia lives forever. And I think that that is so awesome for me. And I'm just I'm excited about having another way of bringing forth this name that I've held on to for so long.


Stacey Simms  31:51

This is not a show about pregnancy or miscarriage, but at the same time, I can't pass on the opportunity. You have found a way To deal with something again, we never talked about it. And I know that women listening are relating to you. So I have to ask, do you have any advice for somebody who has gone through this and hasn't hasn't said anything or doesn't know what to do with all this emotion?


Shaina Hatchell  32:13

I think that it's all about, you know, making sure that you talk about it. But you know, think of healthy ways to get those emotions out. It's, it's different. It's definitely a feeling that I never thought I would have, you know, feeling sad, and then you're like, can be a little frustrated. There's still grieving process that you go through, you know, regardless of what how far along you are in the pregnancy doesn't matter when you know that you were going to be bringing life into the world and then you know, it doesn't happen. It can be an entire grieving process. So give yourself time, be kind to yourself, love yourself. Let your family love you know, those are all things that made the difference for me and allow for my coping to be one that turns in to something so beautiful. And so for me, it was just like, you know what, being kind to myself and letting my family and friends be a part of my journey of healing through this. And it's been great for me, I just say, you know, tap into yourself tap into your loved one, and you will make it through. This is not the end, you know, you can absolutely a lot of people feel like once they miscarry that they will never have children. And that's not true. You know, our bodies can do amazing work, and it will happen for you. Don't give up. Just be kind to yourself.


Stacey Simms  33:33

Be kind to yourself, indeed. Hey, you have already mentioned I always ask people what's next? You have already mentioned that this is a series of books. Yeah. What is the plan here? So when it you know, is there another one in the works? Is it already planned out?


Shaina Hatchell  33:47

Yes. So you this is exclusive right here, this is elusive. So there are actually two more books that I already have in the works. I'm going to of course release them one at a time. So the next book is going to be Shai learns about home management, and Shia is going to meet her very first friend. And her friend's name is Trevor Garcia. And Trevor is going to have type 1 diabetes as well, Trevor will have been diagnosed earlier than her. So he'll have diabetes since he was three years old. And they're going to meet at her first clinic visit, the first follow up in the waiting room. And the families of course, are going to connect, and they're going to talk about some of the things that they've been doing in the home. So the very first book again, I'm just going over the journey through being diagnosed, I don't yet start talking about the treatment, right, the whole management, that aspect of it, so I'm gonna give that in the second book. And then the third book, I'm like, super excited about the third book. I'm excited about the second one, but the third book, I'm going to be introducing type two diabetes into the series, and it's going to be Cheyenne learns about type two diabetes and it's going to be shy and meeting her bye babysitter so the family is going to need a babysitter. And they're not going to be wanting to trust just anybody right because Ryan needs a lot of care and so they end up getting a young lady as a teenager by the name of Kenny and Kimmy is going to have type two diabetes is going to have had been on you know, for favorable influence therapy but has been doing really well with eating healthy and exercise, lifestyle modifications that she's going to be on just like basal insulin and Metformin, and she's going to teach Shai about the difference between her type one diabetes and you know the type two diabetes that she has. So I'm really excited about introducing Kimmy into this Shire learns world and starting to kind of merge type one and type two diabetes so that we have an understanding of each other. I've heard a lot of mean things being said about type two diabetes, like you know, they don't have as much work or things like that and i i Don't like that that is kind of like the conversations that are had or that they're even compared in that way. I think it's time that all types of diabetes, you know, what the the main two types of diabetes really start to understand each other a little bit better. So I'm really excited about that one.


Stacey Simms  36:14

Oh, that sounds fabulous. I'm with you. I think we're all stronger together and a lot of misunderstanding. Shaina, thank you so much for spending time with me. I am so excited about this project. I know how important these books are to families. And I'm thrilled that you've done this and it looks beautiful. So again, you mentioned the illustrator at the beginning, kudos to her as well. But thank you so much for joining me.


Shaina Hatchell  36:35

Thank you so much for having me. I really enjoyed having this conversation with you today. And I am super excited for everyone to continue to see what Shailene has in store.


Announcer  36:51

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  36:57

More information about Shia learns and their whole story. I'm gonna link this up in the show notes. The episode homepage is always at Diabetes There's also a video that she did with jdrf. I'll link that up as well, really nice explainer. She did a live on Facebook a couple of weeks ago. So if you want more information, we will put all of that there as well. And right now her book is not on Amazon is my understanding, but still shipping from her website. Again, Diabetes For all of the details.

tell me something good in just a moment. But first, diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That's the wonderful thing about share and follow as a caregiver, a parent, a spouse or whatever, you can help the person with diabetes managing the way that works for their individual situation. Vinny and I have had multiple conversations over the years about how to use share and follow what you know what works best for us when he was nine. It's a lot different. When he is 15 and these conversations really help us have fewer conversations if that makes sense. You think Dexcom internet connectivity is required to access Dexcom follow separate follow app required. learn more, go to Diabetes and click on the Dexcom logo.


All right, we have some terrific Tell me something good stories. If you've got one, you can always send it to me through social media or Stacey at Diabetes and Mandy writes in hi Stacey, I have something good to share. My type one daughter Maddie entered high school this year and she made the JV cheer team. She is beyond thrilled and excited. me I have to say I'm a bit nervous considering our current pandemic situation and in type one and managing the ups and downs of physical exertion on her blood sugar, but I'm also excited for her to have this experience safely. Have a great day. Mandy, thank you so much. And I hear ya you know, no easy decisions, the stays, but she sent me a picture of Maddie. I asked for cheerleading picture and it hadn't started at the time. So hopefully Mandy, you can send me another one and we'll do a follow up in the Facebook group because I'd love to see that.

I do have a true confession sort of thing about cheerleading. And this is kind of embarrassing, but I'll tell you anyway, when I was in high school, I tried out for the JV cheer squad. I was a freshman or sophomore year. I don't remember that. But I was in high school. I can't do and I couldn't do at the time split, a cartwheel, and anything that required cheerleading skill. It might have just been my school, but I think it was also the time. It truly wasn't the incredible sport that it is today. Did I make the squad? Absolutely. Was I captain of the JV team? You bet. Why? I don't know. Looking back. I think it was just force of personality. Because it certainly wasn't my skill. I had fun but I was also on the swim team all throughout high school and it was just a little too much for me to do so children was one and done but it was a really fun experience.

Another Tell me something good comes from bond Who says here's my new meow Miss Charlotte and posted a picture of her cat. She said I needed a companion doesn't alert like my dog Sammy could but it is love funny that cat is beautiful. So welcome Miss Charlotte and if you want to see these pictures, you can go to Diabetes Connections, the group in Facebook, if you have a Tell me something good just send it to me You can post there or send it to me as I said at Stacey at Diabetes

in innovations this week, last week, we talked a little bit about listener made hacks. But this week is all about the pros. I want to tell you about FDA approval and some new studies about hybrid closed loops.


big announcement for Medtronic recently FDA approved the mini med 770 g for people with type one diabetes down to age two and it lets caregivers See real time CGM and pump data this is on the smartphone. Interestingly, I didn't think this made a big splash when it was announced last week, I would have thought that a share and follow system from Medtronic would have made a bigger punch through of the news that we've been hearing lately. Maybe I am missing something. The whole system is the pump, The Guardian sensor, three, the mini med mobile app, and it is compatible iPhone and Android and the Accu check guide link meter with Bluetooth and that if you talk about the mini med 770 g system, that's what you're talking about. So I will link up more information about this. They are taking orders already for this system. So if you're a Medtronic person or want to learn more, I've got information in the show notes.

Another system already approved, but more information about was in the news recently as well and that is the Tandem control IQ for younger children. So this study was for kids ages six to 13. In this study, they spent about three tene hours in range, which is an average gain of about two and a half hours after four months of the study, which was supported by the National Institutes of Health and published in the New England Journal of Medicine, there were also no severe cases of low blood sugar and there were no cases of decay. The city basically confirms what came before because the FDA has already approved a control IQ for kids as young as six years old. And again, more of this study in the show notes as well.

Doesn't really matter how high tech the pumps are if we cannot afford the insulin to put in them. So I'm always on the lookout for insulin pricing stories. This one is not about fast acting, which would go in the pump. This is about a lower priced insulin that is basically a knockoff of Lantus. I never know how to pronounce these new insulins. I think this one is pronounced Semglee. It was launched here in the US at the end of August, and it will cost nearly three times less than the list price of Lantus. DiabetesMine points out and I'll link There article that this is the first time in a decade in more than a decade that the United States has any insulin with a list price lower than $100. I should note that is for a box of five pens, so it's $100. For five pens, it's not $100. For one, I really want to make that clear.

At the same time, little editorial. I mean, how much does it cost to make So while we're celebrating a lower price, and a lot more work still needs to be done and there's a it still remains to be seen. If the pricing changes, right? Will the other long acting insulin prices come down? Or will simply price go up? I know I sound cynical if you're a newer listener, I apologize. But it's been a long time since we've had any actual good news in this so I will wait to be seen. I would like to be impressed. So let me know if you buy Semglee if you're if your insurance covers it, if you have experience with it. I would love to know how it works, how it compares to Lantus. I'm sure we'll hear more about that it gets out into the real world and what the price actually turns out to be when you go get it at the pharmacy.

So let me know, if you have something for innovations. It can be something as complicated as these large studies and approvals. Something as simple as a hack that you do something that you have created to make your life easier with diabetes, definitely let me know you can email me or you can drop into the group or just ping me anywhere on social media.


Before I let you go, I mentioned at the beginning of the show, couple of diabetes events coming up that you'll want to make note of TCOYD is having a big virtual conference in October, take control of your diabetes is a terrific conference. It was mostly geared for adults with type one, I went to one of their in person conferences A while back, but they have added more for parents of children with type one. So something to look into. If you fall in either group, I highly recommend TCI D it's also for people with type two, and I think we just could use more events that crossover and really help the entire diabetes community so kudos to them Plus, they have so much humor that they Using their presentations, really great people and friends for life, which usually has a conference in the fall in Falls Church, Virginia, they have moved that is this virtual Of course, it will be in December, I will link up more information about both conferences at Diabetes on the episode homepage for this particular episode, but definitely check out friends for life, they did a terrific job of their large their big, big July conference making that virtual, this more regional conference, although this year, it's probably worldwide because anybody can join in virtually, but it is a smaller scope. It's not gonna have as many days, it probably won't have as many speakers, but I'm still learning more about it. And I hope to take part in that as well as a speaker or a presenter, but I'll definitely go as an attendee. So check that out as well.

All right, thank you to my editor, John Bukenas from audio editing solutions. Thank you so much as you listen, I really appreciate you being here. I'm Stacey Simms and I will see you back here next week. Until then, be kind to yourself.


Benny  46:04

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


Transcribed by

Sep 5, 2020

What do you use to treat lows on the go? One of the newest options is a flexible necklace, filled with 15 grams of fast-acting glucose. The Thrive Glucose Gel Medical Alert Necklace is easy to take with you, rip off and open if you need it. The idea came to first responder Kris Maynard after his own severe low had to be treated by paramedics. His family had tried to use the "red box" emergency glucagon kit but missed a vital step.

More about Thrive Necklace from Glucose Revival 

Kris also shares that one of his teen sons has been diagnosed with type 1 via TrialNet and explains how their family is coping with that knowledge.

Listen to our first episode with Kris when the necklace was a prototype in 2018

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

New segment this week! Innovations – focusing on hacks and tips and tricks to make our lives easier.

Happy Bob App on Facebook 

And Tell Me Something Good!

Join the Diabetes Connections Facebook Group!

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

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!

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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 Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.


Announcer  0:20

This is Diabetes Connections with Stacey Simms


Stacey Simms  0:26

this week, what do you use to treat those on the go? One of the newest options is inside a necklace. The idea came to first responder Kris Maynard, after his own low had to be treated by paramedics because his son didn't know how to mix up the glucagon correctly.


Kris Maynard  0:44

Why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for low blood sugar 100% of the responses have always been glucagon is just too much and it expires,


Stacey Simms  1:00

we'll talk about Kris's solution, the thrive necklace, and his son recently was diagnosed with type one. He shares that story

new segment this week innovations, focusing on hacks, tips and tricks to make our lives easier and tell me something good. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I am so glad to have you on. You know, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms. My son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and radio and TV news. And that's how you get the podcast.

Quick birthday shout out to my mom. If you are listening today. This goes live on September 1. It's My mom's birthday. And she had a great line recently that I wanted to share with you. I was talking about how amazed I was with control IQ. We traveled back and forth from New Orleans recently to drop my daughter off at college. And Benny came with us. We rented an RV. I told this whole story last week, but it was basically you know, 11-12 hours in the car there. Same thing on the way home. And if you've done a long trip of any kind, you probably know that you need to raise your basal rates. We have done lots and lots of car trips. My parents are in Florida, we're in North Carolina, they spent the summer in Delaware. So we're all over the place. Except, you know, in the times of COVID, where we haven't traveled at all this was our first trip. Gosh, since everything started since March, probably but we've always had to raise Benny's bazel rates at least 50% that may seem like a lot, but he's very active kid and you know, sitting still, we really needed to increase basal rates by quite a bit over the years.

And of course now with control IQ, we don't change them at all and it does all of the work for us. I was absolutely amazed. For the two days that we were on the road. I only grabbed a screenshot of our trip there. I didn't look on the way home. But he was 84% in range for that time with an average glucose of 139, which I will take hands down any day, which it would translate, I guess to a one see if like 6.4 or 6.5. I mean, it's only two days. But that's if you're if that's how you look at the numbers, that's what you would get. Now, of course, when we got to the hotel, he fell asleep and didn't have insulin and his pump. He wasn't in my room. He was in my husband's room, so I'll blame them for that. I wait a minute. I know that. Nope. We got two hotel rooms. So I stayed with my daughter. My husband stayed with Benny and it was kind of nice to just have it was two days that we stayed there and it was really nice just to have some time alone with my daughter. But yeah, that's that sounded weird about the separate hotel rooms.

So that 84% range didn't last for another 24 hours but it was pretty close. I mean control IQ once you put insulin in the pump control Q does some incredibly heavy lifting for us. I was telling my mom about this, he was texting her about how great it was going. And she said, quote, sh—y disease, great technology. And I said to her, you know, I'm gonna send that to Tandem, because I'm sure they'd want to use that slogan. Anyway, thanks, Mom and Happy birthday to you.

We have a lot to cover. This week, I've added a new segment called innovations which will be coming up after the interview.

So let's get to it. Diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to one drug to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every one drug plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doc Visit your personal coaches always there to help go to Diabetes and click on the One Drop logo.

I met Kris Maynard more than two years ago, it was July of 2018. We did an interview on the floor of the friends for life vendor area. I mean, you know what I mean? on the floor of the vendor area, that big open area, we were sitting at a table, but doing the interview various how I realized my microphones were not meant to be held. I will link back to that first interview, and you will hear a lot of that (microphone noise). That's why I bought microphones standards.

But Kris Maynard's product that he brought to friends for life in 2018 was the prototype for what's become the Thrive Glucose Gel Medical Alert Necklace. He was there to get feedback, see if there was a need for the product. Kris is a first responder who lives with type one. At that same conference. His family went through trial on that testing. One of his teenage sons was found to have the markers for T1D, we've got a lot to talk about with Kris Maynard. Kris, thanks for coming on with me. It's great to talk to you again. I can't believe it's been two years. How are you?


Kris Maynard  6:11

I'm doing good. It's I'm excited to be here.


Stacey Simms  6:14

So much has changed. And I want to talk about not only your product and your family, there's a significant change there as well. But you caught my attention recently, because it looked like you were on Mount St. Helens. Can you tell me a little bit about what you've been doing?


Kris Maynard  6:29

Yeah, well, it's something I've always wanted to do. I mean, it's really a way that I really wanted to be at a test or product. And I've learned over the last couple years, how much I love diabetics. I love being around other people that's living with the disease. So I wanted to be able to just challenge other diabetics to join us into making that hike. And I mean, it was something that physically was the hardest thing I've ever done in my life. But at the end of the day play it was so enjoyable. absolutely loved it. How long


Stacey Simms  7:01

was it?


Kris Maynard  7:02

round trip? It was a total of about nine to 10 hours.


Stacey Simms  7:06

Now pardon my ignorance, but when I think of Mount St. Helens I only think of I think like so many people. I think of it as a an active volcano.


Kris Maynard  7:15

Yeah, yeah. Okay, just make sure I'm not wrong. No, you're exactly right. 40 years ago is when it exploded here in Washington State. And we live about five hours away from it, and it just covered our city with ash. And so I was I don't remember five years old or so at the time. And I just remember wearing the masks really, of what we see being worn around today.


Stacey Simms  7:41

I'm a child of the 80s I remember it's one of the the significant news events of my childhood like when they say what do you remember when you were a kid? You know, that's one of them. So living around the area, and again, pardon my ignorance, but people are allowed to climb now and you can go up there, there's no restrictions,


Kris Maynard  7:56

correct. But you need permits to go there. We actually bought Tickets before co started because in April's when they start selling the permits, and those permits sell out within the first day or two. And so we got ours then to where they only allow 100 people to go up per day. And so it just happened to be that last week was our magical day.


Stacey Simms  8:22

And you had a look at the pictures. You had young people, you had diabetes educators, was almost everybody in the group, part of the diabetes community.


Kris Maynard  8:30

Yes, well, the most encouraging thing to me was two things is one person during the first mile was ready to call it a day. It was just too complicated in that first mile, and we'd kind of just gathered around and saw where she was struggling and she continued on was able to finish it, which was amazing in itself because when we look back, that first mile was 100 times easier than the rest and then 13 year old who's got type one. And I just physically think how hard and how exhausting it was for me. And to think that that 13 year old, was able to do it, because he had his struggles along the way as well. But for him to be able to enjoy that with his dad was just, I mean, encouraging and motivating. For the rest of us. It was amazing that he was able to finalize that exhaustive day.


Stacey Simms  9:29

Did anybody need the thrive necklace,


Kris Maynard  9:32

three people used it. In fact, the 13 year old ran out of supplies. That was the last thing that he had on the way back in about two and a half miles left, which was amazing because the cell service on that mountain was better there. And sometimes in the some houses or buildings that we go in and out. So he texts me saying, Hey, we just ran out of supplies. I'm worried for my son. Who just ran out of his food, his drinks and everything else. And so he said he just used the necklace. I don't know what his number was, but and then afterwards, he said it bounced back up to 157. But there was also other problems that he was also going through between the cramps running out of water. So it really wasn't about the necklace. It was being with other diabetics making that climb.


Stacey Simms  10:28

Well, yeah, and I guess that's a good point. It's a good place to run out of supplies. If you're surrounded by people who also have their own. I assume that they shared with him or he got down.


Kris Maynard  10:37

But I mean, by that time, we were separated, we were actually done. And so I we had to drive back to the finish line. And a friend of mine that was with me, I couldn't make the trek back because my legs were just cramped up and stiffened up and the buddy of mine who's in better shape, ran that last two miles to be able to get supplies. So, the buddy was amazing. He was the former firefighter. And another person was able to call 911, just in case, and then to see him walk that finish line to where you wouldn't have noticed that he was tired at all, or that his legs were stepped up at all. So yeah, I mean, it was fun to be able to embrace at the end and just cheer him on. And that's really beyond seeing him at the top of the mountain and then seeing him finish no one the struggles that he went through.


Stacey Simms  11:30

Alright, let's talk about the thrive medical alert necklace. Give me your elevator speech. What is this? Yeah,


Kris Maynard  11:37

well, it's funny because when I saw it a couple years ago, at the friends for life conference, really still at that point, it was just an idea. And we needed to figure out if it was something that was wanted or needed on the market that kind of helped formulate along with messaging that we're going through with other diabetics on now we need to make something out of it. And so learning that 80% of the diabetics Don't carry glucagon. And from the EMTs perspective 75% of the EMTs cannot administer glucagon can't give injections or can't give IVs. And so I look at it from the EMT side and from the diabetes side. So really the elevator pitch for us is we have the only wearable product to be able to help with the most common issue that diabetics face which is low blood sugar by using what EMTs use, being able to use it for any level of low blood sugar from a low to a severe state.


Stacey Simms  12:35

No, let me just clarify that because I've always confused when I hear that one of the EMTs do how do they treat low blood sugar if they come across someone who needs that kind of help?


Kris Maynard  12:44

Well, I'll take you from a time that I was unconscious camping with my kids is that they take the glucose gel, bring it and rub it on their finger and just massage it on the gums to become absorbed. And it was funny because that But it happened to me. I've administered it many times throughout my career, but I just never thought of carrying it myself because we always had glucagon. Well, that time that the ambulance was called for me, my son administered the glucagon for me called 911. What I thought that he knew was how to properly put it together. He didn't mix the two together. And so that was our failure on teaching him. But that's when I thought, why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for a low blood sugar 100% of the responses have always been glucagon is just too much and it expires. And so at that point, we're just thinking of a cheaper alternative that's really easier to find.


Stacey Simms  13:53

So what was the reaction when you went from idea to product because when I last talked to you, we're not shipping as He said this was something more of a concept. What was the reaction?


Right back to Kris. But first diabetes Connections is brought to you by Real Good Foods, introducing real good entree bowls, real ingredients, high protein, gluten free and low carb. So what are they're talking about here they mean Mongolian inspired beef, lemon chicken, lasagna, chicken. Real Good Foods is here to make delicious foods. We feel good about eating. And by adding these entrees, you can really see where they're going here. They want to make nutritious foods across every meal, snacks, even desserts, but they're delicious ice creams readily available at the local grocery store. We can get our products at the Harris Teeter, they have them at Walmart. Now not everything is in every store so you can find their guide. Just go to the website. You can even get a great coupon right now. And you can order online for everything that they've got. Find out more about Real Good Foods. Just go To Diabetes and click on the Real Good Foods logo. Now back to Kris and he is answering my question about the first reaction he got to the thrive necklace.


Kris Maynard  15:14

overwhelming. Because again, I was thinking and an idea that day worked for me. And that's really where it was going to go to until my endocrinologist came back and said, You ought to make that available to all diabetics because you don't know how many or who you can help. And so that's when we took it to friends for life after that, and then seeing the reactions of people touching it. There was fun to see, in really all of this. The most exciting thing for me is being able to meet diabetics because before I went to that conference, there was only one other diabetic at that point that I've ever met or known. And now since then, I've met thousands. Each one of them. I get excited to meet because I love hearing their stories. I love seeing what works for them. And I love being able to share how we can help them as well.


Stacey Simms  16:07

So tell me what the necklace actually is. Can you describe it because obviously, this is a podcast, we're not looking at it, although I will link up the website so people can see what it is,


Kris Maynard  16:15

yeah, thrive glucose aid. It's implemented as a medical alert necklace. And as it's pulled off, I mean, it's held on by magnetic connectors. So it can really I just say rip it off, and then it becomes uncapped, like a toothpaste container. And it's just squeezed out. And you can put the tube right onto the gums, if that's the state that the diabetic needs to be able to get the help. Or I can just take it off and put it in my mouth and really just squeeze it out myself to just get my blood sugar back up.


Stacey Simms  16:48

And when you say it's also medical alert, it's got the medallion on it. Tell me about that.


Kris Maynard  16:52

Well, I went through a two year process, we put the blue circle on it as the symbol of diabetes because I wanted people to be Got to recognize it knowing that this is for diabetics to be able to help diabetics. And I mean, it took me two years to be able to get permission to be able to use that from the International diabetes Federation to whereas on the backside, is where it says type one diabetes or diabetes, so that again, it signifies if an EMT or someone looks at it, if they don't recognize the blue circle, they can see that it is a person with diabetes.


Stacey Simms  17:26

I know you've heard this, so it's not criticism. But what do you say to people who tell you? Look, Kris, this is great, but I can just throw some Smarties in my pocket. Or, you know, I've got the icing with me, what do I need this for? I wouldn't argue with that at all.


Kris Maynard  17:43

Because I mean, when I learned that only 58% of diabetics carry something to treat with hypose that concerns me that concerns me that 80% of the people don't carry glucagon. So it's that 80% that I'm scared for and I want to To help if people can eat something, or drink something, that's what I want them to do. Matter of fact, if they're conscious enough to be able to take something else, we don't want them to use the necklace because there's more cost effective alternatives. Matter of fact, with me, I carry a, like a eight ounce juice really wherever I go to where I'm saving the necklace for my wife, kids or someone else to where if I can't administer it to myself, they know where to find something. They don't need to go look in a duffel bag, a drawer, a car, wherever it might be. They know where to find it, they can rip it off and now administer it to me. Is it refillable? It is and that was another process through our FDA attorney from the get go she said it cannot be bought. Why is the question


Stacey Simms  18:48

in the way I did you heard me like bracing. Can you kind of Yeah, because I remember it couldn't be at the time but


Kris Maynard  18:53

yeah, it took about six months to be able to figure out that on being able to have them Make it refillable, because from the get go when we initially started about, we wanted it to be refillable to be more cost effective for the diabetic. So that was hurtful news when our FDA attorney told us that it cannot be and then once we figured out how to make it refillable, then we got back on track with what our goal was.


Stacey Simms  19:22

So while back, you were making these available for healthcare providers, and now I see you're making them available for teachers. Yeah. Tell me about these campaigns. How did you decide to do this?


Kris Maynard  19:34

It's funny because you give me the chills when I hear that the health care workers as soon as COVID started, I'm all about the diabetic from the business side. I don't look at it, unfortunately, and I hate to admit that I don't look at it from the business side. I've never looked at coming into this business trying to make money from it. When COVID started, I wanted to be able to provide a way to all diabetic healthcare workers so that they have something And just because at the time and still today, we didn't want them to have to worry about a low blood sugar at a time that they're working their tail ends off on to helping us in our country trying to get it back to a normal state. And so I mean, we ended up giving about $70,000 worth of product during about a four month period. And now as schools are starting to begin now our goal is because the lack of school nurses and and the ones who can actually help administer anything, because ours is FDA a food product. Now, teachers, principals, friends, family, anybody can help with this. If it's needed. They don't need to wait for the EMTs fire trucks ambulance crews to arrive. Now they can help administer what's within our necklace knowing that that's what EMTs are going to use anyways.


Stacey Simms  20:57

Alright, so tell me the secret. How are you? able to afford all of this and how can we help?


Kris Maynard  21:03

I still have my firefighting job. And so time if you can afford me more time, I would love it. Fortunately, we did get some good press out there. And we are able to match really one per one on what we gave away versus what we're selling. And if I can continue that match in one for one, I will do this for the rest of my life, being able to get this out there until there's something else out there that can do better. And I know there's other products. In fact, one product I just picked up and I've been in deep discussion with with xirrus because I think their company that's offering one of the best solutions for low blood sugar, or a severe unconscious with their new GE Volk auto injector. I absolutely love that product. I brought that with me when I climbed Mount St. Helens just so I can have Security so other people can have that security as well. I don't look as a business that I'm trying to compete with anyone. I just want to be able to provide something for anyone that wants to wear a wearable or to have a product to where they feel more comfortable with. And I compare it to some people like apples, some people like peaches, some people like great. And that's what we are. We're one of those.


Stacey Simms  22:25

I love it. It's interesting when you're talking about xirrus and the G Volk hypo pen, you mentioned at the beginning of this, that your son didn't mix up the glucagon, the traditional that red emergency box right that glucagon correctly. And so many studies show that people do not do that correctly. I went to a training, it's probably four years ago now. And I'm, you know, I'm so well educated and every year I take out the old glucagon and mix it make sure I know what I'm doing. And the CDE laughed at me because he said I was holding it wrong. I had my thumb on the back of it. So I would have actually have pushed it too early, you have to throw it like oh, throw it you have to hold it like you're throwing a dart Do not throw your look. Yeah. So I was shocked that I would have been one of the many, many people who use it incorrectly. I kind of ask you, is your son okay about what happened? I mean, I know that you probably are fine. And you know, and you've got to reassure him, but after all this time is he is he's still upset about it.


Kris Maynard  23:23

Oh, he wasn't upset about it that next day. Oh, great. He knew and I knew that it was an educational thing that I neglected on, leading to him. But I mean, at the end of the day, nothing happened. I was able to after I got the glucose in my mouth, everything was fine. And so fortunately, he was able to move up and move on with his day, the next day. Wow,


Unknown Speaker  23:47

that's great, though. How's everybody doing? Now? You've got two sons. They're both just they're both off to college.


Kris Maynard  23:53

Yes, one just moved out this last few weeks and the other ones getting ready to move in about three weeks. And the scary part from my end is the one that's moving across the country is expected to be a type one within the next two years. And that's really something that motivates me encourages me to try to get heavily involved with the diabetes side. There's a lot of things that I don't think being done enough for diabetes, and I want to make sure that I understand the full spectrum so that I can get him the help he needs. Because really, when I was young into my firefighter career, I lost my job for two years because of a low blood sugar. I want to make sure that that doesn't happen to him. And that doesn't happen to any other diabetics.


Stacey Simms  24:41

When you say he's expected to become type one. I assume you've done trialnet correct. Wow. Tell me about that experience. Had you always taken the kids through or was it something you did that you tried newly Can you can you share a little bit about that?


Kris Maynard  24:57

Yeah, the friends for life conference really changed. Many things about me personally, and for the rest of my life, because that conference to me taught me so much. And that's where we were introduced to trial net. And that's where we brought our kids to get tested, including my wife, she got tested as well. And that's where we found out our son had to have the indicators that he's going to be a type one at that point was within the next five years.


Stacey Simms  25:24

Has he shown any signs? Is there anything that you have to do now? Or is it just something that you kind of monitor?


Kris Maynard  25:29

No, it's something we monitor, and he could have gone through some trial testing. But we left it up to him to decide if he wants to partake in that. So really, what I do is I'll take my decks and have him wear it for a few days so I can monitor him to see if his numbers are elevated at all. And fortunately, he's a good sport about it. He still doesn't like to get poked or prodded at but fortunately he's had me to figure out the ups and downs with a diabetes. So he's up for, I almost think that he's an expert in it just as much. But getting him to really, as I say, play my game so I can monitor him and see how he's doing. So the scary part for me is when he goes to college, because now we're apart from him. And so we've been in great discussions with the school nursing program, so that I mean, I'm asking them to test his blood sugar every time that he comes in for a doctor's appointment, so that they know and he knows where he's at.


Stacey Simms  26:35

Are you and your wife, glad that you went through trial net, knowing what you know now?


Kris Maynard  26:40

Yes, whether it's good news or bad news, I always like the truth. That just helps us to be able to prepare and educate him in the process, because I'd hate to find out in two years from now, without knowing that he's a type one thinking that we could have prepped him in some way and so He's really prepped now to become a type one at any point. I love the, of what trialnet is doing and what they offer.


Stacey Simms  27:07

Thanks so much for sharing that. I think people worry about doing trial net, you know, they're not sure what they're going to find out, but I would want to know, so what's next for you? You go on up any more volcanoes you coming up with any other products? Or are you just trying to get your kids off to college?


Kris Maynard  27:22

You know, going up that mountain, I said probably a good 20 times remind me never to do this again. Because of how hard it was. But now that I'm past it, I would love to go do another mountain climb. It's weird how the mind works and how forgetful it can be once you get past something. But at this point, I mean, the the group that we're with, they are more experienced than what I'm in on the mountain climbs. They want to start doing some annually. Whether we do that or not, I don't know at this point. The fun part of this journey too is that somewhere along the line Shark Tank, found us and reached out to us and interviewed me and said, Hey, would you like to be a part of the show? And thinking immediately, I would love to broadcast diabetes on a national stage. So, yes, and so they gave me one week to make a video. And that video that we made, we shared on social media and got tons of viewership tons more than what we normally do. The hard part that we've learned from that is that they said they would contact me by whatever date that it was, and we'd never heard back so we assume we didn't make it to the show. But again, what a fun experience to be able to go through trying to figure out how to put something together answering 50 questions, getting it done within one week and a video getting it back to them.


Stacey Simms  28:55

So you never know they may call and now you know for the next time too. had to do that even better. But we'll keep an eye out for you. Yeah, that sounds great. And I'd love to, is that video still online?


Kris Maynard  29:06

Yeah, we have it on our YouTube channel. I don't think it's on the website anymore.


Stacey Simms  29:12

I think Listen, it's a great experience, right? And you never know, they could call. But we'll leave that video up, you know, maybe somebody listening will see it be able to pass it along to the right people you never know.


Kris Maynard  29:23

Yeah. And again, it really I mean, two things is one I want to get diabetes on that national stage and to the blue circle. I've been in contact with the CEOs that beyond type one jdrf and the ADA on hoping that they will just put the blue circle around their emblem, I don't want them to lose their emblem, but really, each one of them has told me that they want to brand themselves and from that from the diabetes side. That's not comforting to me, because I know outside of the diabetes community, what I've learned is that the jdrf is really known as "the Walk" And the ADA is known as "the legal". And most people don't know what beyond type one is. And I think if the diabetes community got on the same page, how much efforts we can make, because the pink ribbon for breast cancer, I mean, it took them about 15 years to be able to build up that, but the funding for that from the government agencies skyrocketed. And so that's what my hope is with the blue circles to get the diabetes community whether it's type one or type two, because the power numbers coming together, and recognizing that blue circle is what's important to me. So that the fundings there so that I mean, if one out of every three in our world is going to eventually have diabetes, now's the time to come together so that it can get the funding that it needs. So that one out of three doesn't need to get diabetes.


Stacey Simms  30:51

I hear you. Well, Kris, thank you so much for jumping on and sharing your story and the update with us. I really appreciate it. It's great to talk to you again.


Kris Maynard  31:00

It's great talking to you, Stacey. I appreciate your time so much.


Announcer  31:08

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  31:14

And you could find out more about Kris and about the necklace. There's a couple of different kinds, mostly about sizes there. And there is a promo code, you can find that all at the episode homepage at Diabetes Kris is generously giving my listeners 15% off using the promo code, blue circle, and that is all one word. And I really wish him the best. It's not easy to have both your kids going off to college, certainly in a year like this. And certainly at a time when the younger one you know, they're kind of waiting to see what happens in terms of diabetes, but I'm a huge fan of trial net. I really do think as he said, you know, you want to know and I have a lot more information on the website as well. If you want to search that up. We have a very robust search box if you're new to the show. This is Episode 320. And you can search by episode type. You can search by Subject keyword or by date, and we've done a couple of episodes on TrialNet that I would highly recommend.

Alright, my new segment Innovations coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And when Benny was very little, and in the bathtub or at the pool, a kid could have spent the whole summer in the pool. I always noticed his fingertips. I mean, you know exactly what I mean. They were poked so much, they were just full of little pinprick holes. You can really see when they got wet, although I don't know if people actually know this anymore. I mean, they were like little Franken fingers. But when when you have a little kid now, so many of you are already on Dexcom so quickly, I'm not sure if you've gone through this. This is fingertips basically look normal right now. We have been using Dexcom for almost seven years. With every new iteration we have done fewer and fewer finger sticks. The latest generation the G six eliminates finger sticks for calibrations and diabetes treatment decisions. Just thinking about doing the 10 finger sticks we did every day in the past makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings 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 and click on the Dexcom logo.

Alright, let's talk about innovations. This is a new segment I'm starting because I have heard about so many fun things over the years that you are so smart to come up with. And I want to help spread the word. So let's start talking about your innovations. Now this segment will include everything from probably cool stuff coming down the pipeline that we hear from industry and tech companies and I really want it to include your innovations and that can be everything from the woman Gosh, I wish I remembered who this was years ago. She gave me the advice of if you're in a hotel and you have insulin in the fridge or if you're leaving your home and you have insulin in the fridge you want to bring on a trip. She leaves a shoe in the refrigerator the shoe she is going to wear in the morning So she does not forget. Now I use that but I put my car keys in the fridge. Because I'm not putting a shoe in my refrigerator. I'm not even putting my shoe in a hotel refrigerator. But I do put car keys in so that you don't forget, it really helps. You can't go anywhere without the keys. And when you get the keys, if you forget where you put them, hopefully you remember you put them in the fridge. There's the insulin. So that's the kind of stuff I'm thinking of for this segment. This week. Although I guess I just gave you one there.

I want to talk to you about happy Bob. Happy Bob is a new app. And it was created by a mom of a child with Type One Diabetes. Her son was diagnosed at age six. She lives in Finland, which by the way has the highest incidence of type 1 diabetes in the world. What is happy Bob, it is an app that connects to Apple Health kit, it streams CGM data. Now it gives you you know, stars that you can collect. And I think there's a bunch of apps out there that have tried to gamify diabetes, which really hasn't gone over that well because most people they just want to do less. They don't want collect points. Although that is a popular aspect of happy Bob, the big deal about it is that it gives you editorial for where you are. It'll say things like your blood sugar is 110. You are awesome. Or your blood sugar is 138. Your numbers today has been on fire. If I had a buddy, I'd be dancing right now. He was silly things like that. But the best part about happy Bob, in my opinion, is his alter ego snarky Bob snarky Bob enjoys making. I wouldn't say rude comments, but more sarcastic comments. And they're always changing. They're funny. It's just such a smart idea. Now I did mention that it links to Apple. I just found out that they are testing the Android app. So of course they are developing this. There's even a Facebook group I think or a Facebook page for sure. For happy Bob. So I will link all of that up in the show notes. I tried to get Benny to put it on his phone. But he as of this point is not interested although he did think that the snarky Bob It was pretty entertaining. kudos to them for doing this. I think it's fantastic. If you have an innovation like that, send me something I'll post in the Facebook group as well. You can always email me Stacey at Diabetes I'm very interested to see what we come up with as a community. You've got some great fun hacks out there and some really useful stuff too. So let's help each other and spread the word.


All right, time for Tell me something good. And this one is really a nice one. We don't have any huge milestones. I don't have any marathons or 50 year diversities. These are all kind of a day in the life kind of things you'll understand what I mean. Caitlin says my tea Wendy got to have her first playdate with her best friend. Since lockdown began in March. They were so happy to see each other and only had to be reminded once to keep their masks on, which was pretty amazing to me. She writes since they are four and five years old. When we left she said it was her best date. Mike Joyce said the wild flowers on the Pacific Northwest trail are pretty great. And he sent a beautiful picture he posted in the Diabetes Connections Facebook group. Also Mike writes, I've walked a third of the trail to the Pacific Ocean from Glacier National Park. Mike keep the pictures coming. That said our six year old T1D jumped off a small Cliff into a mountain Cove this weekend. She has no fear of man, everybody's getting outside. I mean, that's one good thing. We're all spending more time outside and Shelley said the rain is finally filling up our new backyard lake. If you look closely in this picture, again in the Facebook group, you can see my four year old and his new favorite way to burn that glucose and this kid is splashing.

So if you have a Tell me something good. I think these are all great stories. Send it to me Stacy at Diabetes or post it in the group. Just something that makes you smile. I love sharing these stories. Before I let you go, I am working on a new episode. This will be out probably by the end of this week, and I'm a little nervous about it. So I really hope you give it a listen, I have a feeling. I've been working on this for a while that the philosophy of kid first diabetes second is really not working, actually never worked. So I'm going to be talking about that what I mean explaining it and dipping my toe into I think some pretty controversial borders. So I'm not asking you to agree with me. I mean, you haven't even heard it yet. I am asking you to give it a listen and let me know what you think that'll be out in just a couple of days. And then back to our regular you know, interview type episodes next week. big thank you to my editor John Bukenas from Audio Editing Solutions. A big thank you to you as you listen, I absolutely adore doing this every week. It is such a privilege to create the show for the diabetes community. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days for that bonus episode. Until then be kind to yourself.


Benny   39:07

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


Transcribed by

Sep 3, 2020

It didn't take long after my son was diagnosed for someone to tell us, "Kid first, diabetes second." Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community.

I get it. We shouldn't take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make.

But the more I think about it, more I think that phrase misses the mark.

Check out Stacey's new 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 The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available at Amazon as a paperback eBook and audiobook. Learn more at Diabetes



This is Diabetes Connections with Stacey Simms.


Stacey Simms   0:26

Welcome to a mini episode of the show. I'm your host, Stacey Simms, and I'm really glad that you joined me for this now these episodes I do occasionally are more. I'd call them more editorials. I do interview shows week by week if you're a longtime listener, you know that but this year I added in these mini episodes these minisodes just me, I am not a medical expert. This is more mom to mom advice. Just from my experience as a longtime parent of a child with type 1 diabetes, what I've learned and what I think can help. My son was diagnosed with type one when he was 23 months old.


Stacey Simms   1:00

that was back in 2006. He is now 15 and a sophomore in high school. Oh, my goodness, he is he's very comfortable with diabetes is very confident. He's very independent. And while we are far from perfect, we are doing a great job according to our endocrinologist, and that's all I really need to hear.

This subject has been on my mind for a while. So let's just get into it. I want to talk about the saying, kid first, diabetes. Second. It's been around our community for a very long time, probably longer than I've been a part of the community almost 14 years now. But I just don't think it works. It doesn't work for me. I don't think it works for anybody. So let's talk about it. What is kid first diabetes second all about? I think we know what it's supposed to be right? You hear this most often right after diagnosis. And it means that you know, your life shouldn't change that much.


Stacey Simms   2:00

From what it was before, or you know, you shouldn't take away all the fun things that make childhood childhood. And we don't want diabetes to be the first thing people think about when they consider our children. And we don't want diabetes to dictate every decision that we make. Now for some people, kid first diabetes second means letting them have a giant Sundae, or go to a pizza party. Now it doesn't have to be all about food. I did say it to myself years ago when I let my son go to regular sleepaway camp, not diabetes camp for two weeks when he was eight, and he has gone a month every year since then. So I've said that to myself, right kid first, diabetes, second, let's do this. But the more I think about it, the more I think it misses the mark. Kid first diabetes second, isn't right. It seeks to separate the diabetes from the kid, which is impossible to do. Or maybe it's not impossible, but it doesn't sit right with me.


Stacey Simms   3:00

Here's why implies that you're sort of cheating on diabetes. We're going to put diabetes aside, we're going to put it second. So we can do this other thing that every child should be able to do. Put the kid first, what we're saying is that kids with diabetes, shouldn't be able to do that shouldn't be allowed to do that. You're just letting this be a special case, because it's fun. And it's about being a kid. It's as though we're saying diabetes can't be part of a real childhood, a good fun, a wonderful childhood. take it one step further. And we're actually implying that diabetes can't be part of a good fun, wonderful child, or ultimately a person. It sounds dramatic. I know. But I really don't think it is. Looking at this a slightly different way. I talked about it just a bit in my book, the world's worst diabetes Mom, I use the analogy of the Hulk there. Alright, so when Benny was very young and ready


Stacey Simms   4:00

He was diagnosed just before he turned two. We couldn't explain to him exactly what was going on, you know, you know, when your blood sugar is high, you can be so grumpy, you can be unreasonable not that a three year old is always reasonable to begin with. But it was so hard to explain to him what was going on. And it wasn't until, I mean, really till about age four or five, that we were able to start working on a few strategies to help and one of the best involve the Hulk. We started telling Benny that he was a lot like the Hulk. I don't have to explain to the Hulk is right, the Marvel superhero, big green guy, comic book, TV show, movies, that whole thing. Okay, so we started telling Vinny that he was a lot like the Hulk when his blood sugar was high, and he felt angry and mean. But unlike the Hulk alter ego, Dr. Bruce Banner, we said he could learn to control the big green guy. So we started by having him recognize that he was high. This was before the days of Dexcom for us, so we would just test blood sugar, and then Benny would work on removing himself from the situation. He could go


Stacey Simms   5:00

It was room and beat up a stuffed animal. Or he could yell into a pillow. He could sit quietly with me, he could color he could drink water, he could be mad. But he couldn't release the Hulk on other people. It wasn't perfect, but it really helped him process what was going on in language that he could understand as a little kid. So fast forward to the Marvel Cinematic Universe. And this is, of course, the movies, the Avengers movies, and we're big comic book people. We have seen every MCU movie together by family, we all have our favorites. This was really as an aside us such a fun part of our, I don't wanna say our family history that sounds very high and mighty. But my children really were old enough to see these kind of movies just as they were coming out. And now they're older and they don't want to be with us as much and we were able to see all of them together. And it was fun in between arguing about the theories and talking about the characters and we saw the last I want to say four or five movies on preview night I would get tickets on the Thursday before they were released and we always will


Stacey Simms   6:00

A big deal about it. So it was great. And if you're familiar with the movies, or even if you're just familiar with the character that you know, the Hulk is always struggling, but the character is right. He has two distinct sides, Bruce Banner, and the big green guy, and they work in opposition. And that's kind of what we were telling Benny right this side can't understand that side. Or you know, when you're high. You're not you. You've got to get control over that part of you. Then we saw Avengers endgame. And I almost fell out of my chair when smart Hulk showed up. I What is he? I guess he's called Professor Hulk. But whatever he is called. Bottom line is that Dr. Banner has figured out a way to embrace his Hulk side, and the two are at peace. I looked this up. Yes, I did some research into Professor Hulk. Marvel says equal parts intellect and brute strength. The professor represents banners ideal version of self. And that's it. That's my hope for Benny. Now I have to stop for a second and say I can


Stacey Simms   7:00

Knowledge I am saying all of this as a person without diabetes, I'm the mom, I'm not the one living it. So I understand he has to find his own ideal point. This is exactly what I'm working toward. My son can't take diabetes and pretend it's somebody else. Yes, that worked when he was three or four. But in his young adult and adult life, he can't take his bad moods and its highs and lows and push them off on the other guy. I'm of course not saying highs and lows are not real. Obviously they are, they need to be acknowledged. And they in many cases need to be accommodated for by the people around the person with diabetes. But those highs and lows are part of diabetes, so they're part of him. And if Benny is able to embrace the side of him that he sometimes wants to reject, he will be that much stronger. And that brings us back to kid first diabetes. Second, it needs to change. It needs to change in our thinking to simply kid with diabetes. So what is that


Stacey Simms   8:00

That mean in practice, birthday cake? Yes, that is a life with diabetes, sleep over sure that's a kid with diabetes, soccer practice without me there. Same thing. I think if we treat these events and foods, like we're somehow cheating on diabetes, or somehow separate from it sends the wrong message. I mean, think about for us without diabetes. I am not eating birthday cake every day. But I sure I'm gonna have it the next party I get to go to knowing that. Do I then have to say, woman first birthday party attendee second? Or maybe mom first mom who really needs to eat more salad and fewer desserts second, I mean, you share that right? There's that guilt. Right mom, first mom who shouldn't be eating cake second. And it's not always about food. As I've mentioned, milestones and events are very relevant here too. So if you're saying kid first diabetes, second about, let's say a trip with the grandparents, you know the older sibling when


Stacey Simms   9:00

The grandparents did a special trip. And then a couple years later, the younger sibling with type one wants to go insure kid first diabetes. Second. Well, you're really telling your family that kids with diabetes shouldn't be able to do that. You're just allowing it, because it's fun. And it's about being a kid. It's just being a kid with diabetes. It's not easy to change our language about diabetes. I've been saying kid first, diabetes second for years. I looked it up. And it first shows up in my blog, in 2011. But words matter how we talk about diabetes matters. And our kids are listening, even when we think we're being careful. So I'm gonna stop saying kid first diabetes. Second. That is not how I actually parent and teach. It does not work for us. And it's not how I want Benny to think about his life with type one. So what do you think? Agree? Disagree? Remember, I am the world's worst diabetes mom.

I'd love to know what you think you can email me, or find me on social media, I'm linking up everything in the episode homepage. The show notes for this will be at Diabetes You can find all 320 episodes of Diabetes Connections there. We also have an extremely robust search. So you can search by keyword by topic by date, and find whatever topic you are looking for. But I'd love to get your reaction here, especially if you've listened this far, and you're an adult with type one. What do you think about all this? The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes is available on Amazon in paperback eBook and audio book. I hope you check it out and read some reviews. It is all about our journey with type 1 diabetes, but it also features some mom to mom advice. And it gives you some suggested questions to bring to your next doctor visit that always confused me. How am I supposed to know what to ask if I don't even know what I don't know. Hopefully I can help you out there. All right, I will see you back here next week for our regular interview episodes. Thank you so much for joining me.


Stacey Simms   11:00

I’m Stacey Simms, until then be kind to yourself.


Benny   11:08

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


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