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: April, 2021
Apr 29, 2021

Dr. Stephen Ponder coined the term "Sugar Surfing" in 2013 to describe a real-time, dynamic system of managing diabetes. In this "Classic" episode we take a deep dive into what Sugar Surfing is all about and get Dr. Ponder's perspective on everything from parenting teens with diabetes to how he feels after 50+ years of living with T1D himself.

Dr. Ponder is the medical director at Texas Lions Diabetes camp where he’s volunteered for almost 40 years and in 2018 he was named Diabetes Educator of the Year

It’s hard to believe now with CGMs and closed loop systems, but the thinking you’ll hear Dr. Ponder talk about was pretty revolutionary in the early 2000s. This interview is less than a year after he published his book.

Sugar Surfing info (including how to get a free book if newly diagnosed)

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Episode transcription below 


Stacey Simms  0:00

Diabetes Connections is brought to you by Inside the breakthrough a new history of science podcast full of did you know stuff.


Announcer  0:11

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:17

Welcome to a classic episode of the show. I will be so happy to have you along we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, and this time around, I'm revisiting my first interview with Sugar Surfing Dr. Steven Ponder. Dr. Ponder has lived with type one for more than 50 years. He is a pediatric endocrinologist and a certified diabetes educator. Sugar Surfing is about real time management of diabetes. Dr. Ponder coined the term in 2013. But it was a long time coming, a lot of research, a lot of work.

It's hard to believe now with continuous glucose monitors and closed loop systems. But the thinking that you're going to hear Dr. Ponder talk about was pretty revolutionary in the early and mid 2000s. This interview comes less than a year after he published his book sugar surfing and by the way that is still free for newly diagnosed people, newly diagnosed families. And I will link up more information about how you can get that in the show notes over at Diabetes

So what is Dr. Ponder up to these days? Well, he has become a frequent and welcome guest on this show. I last spoke to him for our New Year's Day episode when health care providers were getting the COVID vaccine that was such a joyful show. I loved being able to talk to them some of the first people in the country to get the COVID vaccines and he was one of them. Dr. Ponder is the medical director at Texas lions diabetes camp, where he has volunteered for almost 40 years. And in 2018 he was named the National Diabetes Educator of the Year he also founded a free medical clinic for children all children, not just those with diabetes, our original sugar surfing interview in just a moment.

But first, this episode of Diabetes Connections is supported by inside the breakthrough surprising stories from the history of science. Dan Riskin, digs deep and entertains as he connects those old stories to what modern day medical researchers are facing. As you know, 2021 is the 100 year anniversary of the discovery of insulin that is arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. I love this podcast I have listened to every episode I highly recommended search for insight the breakthrough anywhere you find podcasts, and a good time to remind you this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Dr. Ponder, thank you so much for joining me.


Dr. Stephen Ponder  2:50

Thanks for having me today. Appreciate it.


Stacey Simms  2:52

Yeah, it's I'm excited to talk to you. But before we talk about sugar surfing and some of the listener questions 50 years with type 1 diabetes this month, how are you doing? And do you remember your diagnosis?


Dr. Stephen Ponder   3:03

Oh, very much. So I was nine years old when I went into the hospital. And I was having fairly mild symptoms, increased urination, you know, weight loss and so on. Parents were puzzled by that took me to my pediatrician. And I don't remember all the details. I do remember getting poked a few times. And lo and behold, later that day, my mom was getting was called by my pediatrician. And I was admitted to a local hospital in an old fashioned ward of all things with four beds. They were they were not separate rooms at that point in time. And I was managed for about nine to 10 days in the hospital. Interestingly, by today's standards, I never saw a pediatric endocrinologist. Of course, there were not many of them in existence in the in the 1960s outside of large, you know, academic institutions. But I was managed by a pediatrician my entire childhood.


Stacey Simms  3:55

You were managed by a pediatrician. That's fascinating. What was the treatment? What was the management like?


Dr. Stephen Ponder   4:01

Well, not unlike a lot of people today you know where you'll hear stories where the doctor or the nurse handed down a lemon or an orange to practice injections on I really fell into that classic model where that I was given a piece of fruit to inject my insulin into practice. We did have plastic needles back then but the reality was I was sent home with glass syringes and reusable needles which were about 2625 to 26 gauge which by today's standards were huge. In terms of both length and and and width. And I took one shot today of a what what doesn't exist anymore and insulin call lanti le n te the closest thing that comes to it is his mph insulin, the cloudy mph and even many of your listeners won't even know what that is anymore in this day and age but I was treated with lenta insulin for gosh about 15 years until I started medicals School in 1980. And my first endocrinologist who put me on the path to multi dose insulin therapy, and very quickly after that insulin pumps,


Stacey Simms  5:09

Wow, that's amazing how much the practice must have changed what led you to become a pediatric endocrinologist?


Dr. Stephen Ponder   5:15

Well, I think that diabetes camp when I went to camp in 1981, it was kind of interesting. The person who ultimately would become my mentor was doing a research study for one of the insulin companies that were just rolling out biosynthetic human insulin, up until then we were using animal insulins. And during that study, his research nurse asked me this innocent question about diabetes camp. And she said, Oh, by the way, Steve, we have this camp for kids with diabetes. And I had actually gone to camp, not the same one. But I'd gone to a camp a couple of years after I was diagnosed. So I said, Sure, why not. And I said, it was about that much commitment. And after I went to the camp, in 1981, I just found my calling, I went back every year, and I have been going back every year since and, and about 25 years ago, actually became the medical director of the children's diabetes camp in Texas at the Texas lions camp. And that pretty much sealed my fate in regards to becoming a PDA, pediatric endocrinologist. The friendships I made, and the people I was able to, in some ways, I suppose influence. And it's been something I'll continue to do until I can't do it anymore. And I go back every year, I've spent several years of my life in the town where this camp is located. In fact, we recently, about 10 years ago, they just recently purchased a home not too far from there, which I may well retire to at some point in the future. You know,


Stacey Simms  6:52

this is the time of year when a lot of families have already signed up for summer camp for diabetes camp, but there may still be people on the bubble trying to figure out is this the year we do it? What would you say to them? Why is it good for kids? And what about the reluctance of cash? You know, I think it'd be home sick, are they gonna be taking Well, you know, care for as well as I can do at home?


Dr. Stephen Ponder   7:12

Well, I think it depends on the camp, the camp that I work at, serves children with special needs during the rest of the summer. And so they're very accustomed to taking children whose parents are, have been generally reluctant to let them out of the home. And these are children and they have visual problems, hearing problems, physical disabilities, cerebral palsy Down syndrome. And so they're extremely capable and competent. And getting the young boys and girls involved very quickly. In fact, as soon as the children are dropped off, they're whisked away to be, you know, to a playground to be active, to get settled into their, their banks and so on. They have really taken it to a fine art to the ability to keep kids from being homesick. Now we take kids that are aged eight to 15. At this camp, and, and yes, there's always a little bit of that at the beginning. For some of the eight year olds, not always, but some of them may struggle a little bit. But they are generally within a day or so just right in the swing of things if not just in a matter of hours into the swing of things. So I think we've we've not had to worry so much about that. Now my medical staff, we take about 75 people on the medical staff and we have 220 campers in two separate sessions. So 440 total, and we have a very high level of competency in that group too. Many of them are former campers, their medical professionals, nurses, doctors, you know, endocrinologist and volunteers. So we I think we've done a pretty good job over the last 35 years refining the methods to keep kids engaged, happy and active to the point that when they go home a week later, there are many of them or would like to say a little bit a few days longer.


Stacey Simms  8:52

I think diabetes camp is fantastic. My son is going to have his fourth year fifth year he'll be he'll be a fifth year camper this year. And it's been amazing the friendships he makes the the kids he stays in contact with and the empowerment this camp is where he did his first inset it's where he moved his Dexcom to a different location it's it's just so great for those kids to kind of figure out who they are I think two away from their parents. I'm a huge supporter of summer camp I think that's great.


Dr. Stephen Ponder   9:20

It's a wonderful experience all the way around and and and it forges some great friendships as you've already mentioned, that can continue well after camp especially I suppose in this day of social media era of social media. The the campers can stay in touch but you know,


Stacey Simms  9:34

don't get me started on the group texting that goes on my kids go to a different a longer summer camp later in the summer to them the group texts that are going it's crazy. But let's let's talk about sugar surfing. You have really hit a nerve I think in a great way with so much of the diabetes community. Sugar surfing and I'll ask you to better explain it but it seems to me is about learning how your body reacts and really Staying on top of your diabetes, more so so that you're I guess less reacting less to what's going on trying to predict more. And instead of making big changes all day long, trying to kind of nudge your blood sugar here and there, am I am I even close?


Dr. Stephen Ponder   10:15

Oh, you're absolutely right. That's exactly what it's about. It's management in the moment, as I say, in the book, once you look at blood sugars in a dynamic fashion is something that's constantly shifting and changing, you come to the same conclusion that you have to make anticipatory judgments as well as reactive judgments. And in a perfect world, half of your control is what you plan. The other half is what you have to react to what you have to do based on unexpected occurrences. And that's just life in general. So I think you can take a lot of the things you know about life in general and apply them to diabetes, you just have to be comfortable, or develop a sense of comfort with the various forces that you have at your disposal, that can move your blood sugars around whether it's insulin activity, the food you eat, the types of foods, the amount you eat, when you eat them. And when you boil it down. Diabetes Care is nothing more than a series of informed choices. At the beginning, those choices are in some ways made for you, or at least you're instructed to make these choices a certain way. But many people find that very limiting, and they want to break free of that. And many of them have and have done that well before I wrote this book. And whether they call it sugar surfing or have some other term for it. They're making more management decisions in the moment, which really improves their control and helps him better steer their their glycaemic trend lines in a more normal fashion.


Stacey Simms  11:43

Well, let's see if we could get kind of specific if you don't mind. I'm curious, like, how would you tell someone, here's how we're going to use sugar surfing to make your morning and your breakfast, a little bit more smooth, would you mind maybe taking us through that, like you wake up at a certain blood sugar and you're going to eat something for breakfast and how you might handle that?


Dr. Stephen Ponder   12:03

Well, a lot of the principles behind sugar surfing are things have been taught for many years, they include, you know, waiting a sufficient time after you take your insulin, to better time it or get it in synchrony with the food you're about to eat. Also understanding the glycaemic or the the fingerprint, if you will, of the meal of the food you're about to eat as well. So you have to match those two things up, you know, I use metaphors a lot. And I will say this to the young children, that, you know, a football quarterback that's throwing a football to the wide receiver is actually throwing the ball to a spot that there's no person at at that particular point, it's released. And you're trying to do the same thing with between timing food and insulin. If If food is the ball, and the wide receiver is the insulin, you know, the the quarterback, that is the patient needs to lead, you know, lead the inflammation of the lead a little bit before you throw the food at it. And in a practical way, what's your surfing, when you're looking at the trend line on your continuous glucose monitoring device, you will often want to wait for a band or an inflection point downward. That generally occurs anywhere from 10 to 15 to 20 minutes, maybe longer, maybe shorter. After that insulin dose is given such that the downward force that insulin is being seen on the glucose trend line, then the when the food is consumed, then it's more likely to be matched up or synchronized with the rising force, if you will, of the sugar that comes from that particular meal, assuming there is a lot of carbohydrates and you have to then adjust that insulin dose according to what you understand about those that particular food. And to be more specific for breakfast, I promote the concept of the top 10 list. And this is not David Letterman perspective. There, everyone has a top 10 favorites, everything you have a top 10 favorite breakfast, the top 10 favorite lunch and dinner. And that can easily be determined over the span of several weeks, you could actually count well how much how many times they this person he decided the other thing anyway, focus on your top 10 list. So if you if you enjoy a certain type of cereal, or oatmeal or toast or pancake or whatever you have for breakfast, then determined over time. And this is through observation, determine what effect those nosepieces meals have in general on your blood sugar, how soon they respond, how how aggressive they tend to be. And then you design an insulin regimen that best matches those and you use your trend line on your sensor to give you the best idea of how well you're matching those two things up to the point that you minimize the rise in the blood sugar. You want to prevent the spike that occurs after the after you eat what most people make the mistake of doing and they've been taught this and it's not always their their fault is they've been told it is to take their insulin at or after they eat. Now while that works fine for a child or toddler who you don't know will finish their meal if it's an older child or an adult who can easily you know, complete the whatever they've been had food put in front of them, then they should be timing their insulin with their food better with the goal to be to minimize the rise that occurs afterwards. Now, that's what the a one c elevations come from. And most people that are down in the six, seven and 8% range is what happens to their blood sugar after the not so much what they are before the. And I'll use this example a lot with people, if I was teaching somebody how to hit the golf ball, and I gave them the proper stance and positioning and so on the right clubs and all that, and I left and strike the ball and 100 times, yet, I never let them see where the ball landed, I'm not sure I'd make them a very good golfer. And that's in a sense what you're doing, you need to see where all that effort really leaves you. And if you're not checking a blood sugar in the next two to three hours after a meal, which a lot of people don't, or they've never been told to do, then you're setting people up in some ways to fail, because the assumption is that the doctor has given you some sort of ratio or some sort of formula. And they've told you to measure certain amount of food. And if you only do those two things correctly, you'll basically hit a hole in one every time and I think anybody who's done this for any period of time knows that that's just not true. And you need to have a different way of looking at this and that you may have to steer it even as it's moving. And that's a more advanced sugar surfing method is is trying to steer the direction of your your trend line after you've already taken your insulin and after you've already taken your food. But I'll tell you I do it all the time. You know,


Stacey Simms  16:31

I use it a little bit because that is you say that, and I'll put this back in here. It's a little bit more advanced, you want to be careful with this stuff. But how do you do that?


Dr. Stephen Ponder   16:39

Oh, well, you know, it's observation, it constant observation, I glanced at my sensor track anywhere between 40 and 50 times a day. It's not unlike you glancing at the dashboard of your car, when you're driving home, or looking in the rearview mirror, you're constantly scanning your surroundings as you're moving forward. And you have to take that same principle with you. When you sugar syrup. I mean, if you're surfing, you have to be well aware of your of your surroundings. So you just can't act three or four times a day. When you take an insulin dose and or eat food and expect to have the tightest control possible. You have to decide how willing Are you are her how able are you to be more aware of what's going on in the moment. As you see something trending up or trending down, keep us keep more of an eye on it and decide do I need to step in and alter the direction of my my trend line. I mean, as we're talking right now I'm looking at my sensor and I'm straight line at 96. On my particular sensor I've been I've been in my zone between 70 and 140. For the last several hours, I'm pretty much a straight trend line. But when I start to slowly drift down or slowly drift up, I pay a little bit more attention to that. And I want to see if it is is it approaching a threshold that I've decided in advance that I'm going to act upon. And I change those thresholds all the time based on the circumstances if I'm outside doing lots of intense work, I may want to run a little bit higher, and I'll tolerate a blood sugar of 161 7182. So I'll have a bit of a buffer underneath me if I'm if I'm you know doing a lot of yard work or doing a lot of exercise. Yet when I'm in the office like I am now I like being around 100 between 80 and 120. And I did steer the line in that fashion. And I do it through frequent glances and audit. A lot of times it's just looking at the sensor plot. And that's it, I do nothing else. I just stopped looking at it a couple a few seconds ago. And but if I saw something trending down, I'm going to preempt or act in advance of developing a low, I'll do the same thing in advance of what I think will become a high. Now do I sometimes over treat or prevent do too much? Yes, I've done that in the past. That's when I was just beginning this. But I've learned to use much smaller quantities of both insulin and carbohydrates to steer this line, I don't have to take 15 grams treated low, I can prevent a low with four grams. And I use things that are easily available. sips of juice, glucose tablets that have four grams of carbohydrates. So I've used these units of currency if you will. And I've learned how to use these to make small steering moves in the direction of the line of blood sugar. And that's really what sugar syrup is all about is steering that line, which everyone has. And nobody has a straight line blood sugar everybody, everybody's blood sugar line moves with or without diabetes. And I say this in the book, I say it in my workshops. The only person with a straight line blood sugar is a dead person, always on the move. And you just have to learn how to steer it. And the continuous glucose monitoring technology is a paradigm shift in diabetes management.


Stacey Simms  19:43

Let's talk about the CGM. I have to tell you in the last we've used it for a little bit more than two years and it really has changed our management and just like what you're going to talk about here in that when you see it going up. You can take a little bit of action or when you see it going down. Do you need a CGM of some kind of sugar, surf and You know, is that something that really has changed your way of even looking at management.


Dr. Stephen Ponder   20:06

When I first came into sugar surfing through the concept of what I call frequent pattern management, we did a research project a few years ago, we published in 2012, and diabetes care. This is a randomized control trial, where we developed the technology which would share information every night, with families, electronically, they their blood glucose meter was a wireless ahead of wireless modem, it would upload to the cloud, and every night, it would send all the information back in a very colorful format for families to look at. But we did a year long study where we wanted to see what the impact of that that frequent feedback would have on on on behaviors. And we found that we saw improved control. with patients who got that regular feedback rather than taking the time and effort themselves to go download or print something out or write things down in a logbook. And such, we use a control group where they everyone else just did that, they just they would do that whenever they felt like it. But that frequent follow up that frequent exposure to the data, improved control by a full percentage point, if there anyone sees or over 8%, at the beginning of the study, after a year, it had dropped and stayed stayed down about 1%. If it was seven and a half, or below, I'm sorry, it is below eight. That is they improved by about a half a percent. And this was with zero physician interaction with just getting information back in their hands. So this is a very, very preliminary version of what you could call CGM, which is, and that's really hyper frequent pattern management, because you're glancing down at that sensor. Now, that depends on the human being that using that data, you know, yes, it's recording every several minutes, it's giving you a data point, but somebody still has to look at it. And somebody still has to make decisions about what to do with that information. And then they need just like Kenny Rogers, you know, you know, walk away, run, hold and fold, and that sort of thing. That's what you're doing with with this information, you're making decisions in the moment. The fact of the matter is, they see that people are making decisions all day long with your diabetes. This is in the book, there's a study a few years ago that showed the average person without diabetes makes 221 choices a day about food. And so that's just about food, much less whether you have diabetes, and you're worried about food. So choices are the currency of control. And as you're making these choices, you're not always going to make the best choice, you're always gonna make the right choice. But you hopefully you're somebody that's wise enough to learn from those choices, and make better choices the next time. So it's a constant series of self improvement steps that you're doing with sugar surfing, it's not that the doctor gives you or issues you a set of directives that are somehow magically going to keep you in control. Those are starting points Don't get me wrong, I think dosing algorithms and so on, are all right, but they're not an end all be all. In fact, I have a hard time giving them out to patients now because I don't believe them or use them myself, other than just as a starting point. And I can't and I say that as a caveat, the family that said, Listen, I'm going to have to do this because you have to have your school orders for your child that a nurse will have to administer, I can't expect the nurse to be able to nuance things like you can as a mom or a dad or as a teenager. But I have to do this, it's part of what I have to do now. But it kind of pains me a little bit that I have to do this because I don't believe in it anymore, like I did a number of years ago, because of the dynamic nature of how diabetes can be controlled. Now you can get reasonable controls, don't get me wrong with with your with your algorithms, your carb ratios and your correction factors and so on. But, but you really can, you can take it to a whole nother level. And I get my keep it once he's down to 5% range. Now, by doing this in a dynamic fashion, you can get a good respectable 6% to 10% a one c by doing it old school, you want to call it that way. But you want to take it to a higher level and get down to the five or even to the normal. Below that it takes a lot more, you know, attention to detail. And and and sugar surfing.


Stacey Simms  24:00

Well let's let's grab a couple of questions that I took from social media for you about that exact point. This one is these are mostly about kids. But I think they're they're relevant overall. So this person says, if you want to employ just a couple of techniques with a child to increase in range time, what would they be? I don't this is her. These are her words. I don't want to go insane and spend every moment thinking about and evaluating my child's diabetes we want to live but I'm willing to make some changes.


Dr. Stephen Ponder   24:29

Absolutely. That's a great question. The first thing that I find with any patient I see when they come to see me new and they've been taken care of somewhere else is that they do the they don't do as good a job in timing the insulin and we touched on touched on that a little bit earlier. Many folks will come in and they may have been very well trained. They're very well motivated, but there's still dosing insulin after the fact. And if you see the impact of impact of that, on the rise of blood sugar that occurs after the meal, you will quickly say well, we need to do something being different, we need to take that infant ahead of schedule and we can. Now depending on the child, if there's somebody you, you know, who will reliably consume the meal they have in front of them, then then go for it. If it's somebody, you're not sure that they'll eat the whole meal, if they're on an insulin pump, there's some tricks you can play, like, extend the bolus over 30 minutes or 45 minutes. That said, once you know that, they're not going to complete the meal, you can still aboard the rest of that dose, and they can get about half of it that way. So there are all sorts of tricks you can play if you're using pumps. Now, if you're doing shots, you have to just be certain that that child is going to be able to consume the carbohydrates that are put in front of them. And, and I think that's an important that's an important tip and sugar surfing, is timing, timing is everything. The other is checking blood sugar Two hours later, whether it's with a sensor with a meter, and correct anything that's out of range, and you want to use a golf metaphor for that. That's what that's like having part three part four Whole Again, my feeling is nobody has a hole in one with every every insulin meal combination, that two hour reading gives you an opportunity to do a corrective dose to steer that blood sugar back toward your your, your target number, which in turn will lower that a one c because you'll spend less time up in the higher range which again, will contribute to a higher a one c value.


Stacey Simms  26:20

I like all the golf metaphor is you got to come to Charlotte and I'll take you out we'll play some golf, do you? Alright, so the next question is, can I ask? She says, Can you ask Dr. ponder about basil rates and we didn't talk about this yet at all. But she goes on to say I know he doesn't advise we use too many. But I find that my child a teen does better with about five basil rates, especially at least two overnight to account for the morning rise. Can you address that?


Dr. Stephen Ponder   26:49

Well, basal rates are our habits have a purpose behind them that sometimes they have. Some people use them in a different way. Let me just try to explain this. In the way a basal rate should work is just to keep you steady at whatever level your blood sugar is after your mealtime insolence, or your corrective insolence have gone away have dissipated. In other words, he just keeps you steady. However, some people use basil rates to offset indiscriminate eating and snacking that people don't vote for. And so as a result in in the Western world, we tend to run basil heavy, as opposed to maybe in some other parts of the world. In Japan, for example, they run rather basil light, there's less between meal snacking that goes on in some cultures. And there was a study done a few years ago that looked at basil insulin needs in and Japanese children, it found that they were about 30 to 35% of their total daily insulin dose, which flies in the face of you know, the general rule of thumb, which is you take about half of your daily insulin dose is a basil, insulin. So I think that I think there's a general tendency for people to look at blood sugar patterns, and just try to adjust basal rates rather than just to steer them around in a moment. There are there are increases that occur in blood sugar's overnight. And I agree, growth hormone and cortisol, which is another hormone that you produce early in the morning upon awakening can steer your blood sugar's up. And if you're trying to anticipate those in advance and, and and give additional infant espressos that has been something that's been done for many, many years, but generally speaking, most people can do well with either one, two or three basil rates. And a good friend of mine who you may have interviewed Steve Adelman is notorious for saying that anyone with more than three basil rates needs a new endocrinologist. And he can say that he's an he's a, he's an adult endocrinologist with type 1 diabetes almost as long as I've had it, and very well known and respected in the community. And I certainly adhere to his recommendation. Now if I if I see a new patient, it's on five or six basil rates, if I can tell them if you don't eat breakfast, which is what you should be able to do and your your blood sugar's in range. If your base rate set correctly, you'll stay in range more times than not over the next several hours until the next meal. But if all of a sudden you're you start dropping or start going up, well, your basal rate may not be set, right? You may be thinking that it is but it really isn't. But just think about the original intent of a baby, right is to keep you steady. It's not supposed to bring you down, it's not supposed to let you go up. It's just supposed to keep you at where you're at. As soon as the other insolence that would move you up and down, have gone away. And so if I wake up if I'm if I'm traveling through the night at 200, you know, between, say, I go to bed and I go up to 200 at midnight, and I'm at 200 in the morning, my basil rates, okay, that's perfectly fine. It's just that I didn't correct that that height and bring it down. It wasn't that it was going from 200 to 300 to 400. That would have said it was not enough or it was going from 200 to 100 to 50. Over six hours, that would be too much, but that it would just stay steady. That's the purpose of the base rate. It's different versus a bowl with insulin. So the the individual injections of fat that the insulin I know blog, blogger Piedra that used to maneuver up and down another metaphor, a pilot told me that they perfectly understood this concept of sugar serving. He said, you know, he's cruising at 30,000 seats. And you know, he that's what he's that's his cruising altitude. And if he wants to go down to 28,000 feet, he has to take action to make that happen or go up from 28,000 to 32,000 feet in his in his jet airplane, he said, I totally understand the concept of maneuvering, various levels in the base rate is just maintaining altitude, that's all it is. So these rates are sometimes misunderstood. And they're, they're overdone and some people, but I've gotten to the point of just letting people play on the rates they are. And if they can, if they live up to the original intent, and CPU steady in the absence of food, or exercise, then then that's fine. But I find a lot of people don't find that's the case, they find it when they don't add the foods and all the facts in there that the base rate really isn't what they need, they need to be on something more simple. And I try to simplify that whenever I can.


Stacey Simms  31:06

That's really interesting. And while we were talking there, I grabbed my phone, because I take pictures. Anytime I change a pump setting, I take a picture of it, because then I always have it with me, even if my kids pump is not with me, I have I have six programmed into my son's insulin pump. But the funny thing is that three of them, well, four of them really are about the same as the one you know before. So I really, if I really wanted to, I could get it down to three. Tomorrow. That's funny, I never even thought for some reason I never even thought about that. But they're but they're separated by point 0251 of


Dr. Stephen Ponder   31:39

them very subtle, it remember, it takes about an hour and a half to two hours before any, any rate change has a significant effect on blood sugar. So what happens is, if these are very close together, they may essentially just be blending into each other. And there's there's wobble in a pump rate the pump is not, you know, it's accurate up to a point. But even it has some variability built in. And if you factor in air bubbles, and you know, the sides may be leaking, there's there all sorts of things that, that make our diabetes prone to having variants in it, and plus the meters themselves, the sensors aren't 100%, but they at least give you a trend. foods are digested differently every day. There's so many variables. And it's in chapter five of the book, you know, false idols, there's so many variables in our control that you have, you can do nothing but just steer within a range. And I think that's the bottom line whether my blood sugar is exactly right now as I speak 93, or whether it's 95, or whether it's 90, Israel irrelevant to me, it says I'm trending straight, I'm in a zone, which allows me to function normally do my job, have this conversation with you, and not have a worry that I'm going to be dropping in the next 15 minutes or start spiking up in which time I'd have to excuse myself and take a small dose of insulin to prevent that.


Stacey Simms  32:58

Let me ask you another question. And this will be more of a personal one. For me. I did get a question about teenage boys. This one wants to know, what should a teenage boys a one c be? And I'll let you answer that. I think there's a lot of variability there, too. That's so personal. But my question is about teenagers. My son is 11. And he was diagnosed before we turn to so of course, we went through many years, and we did everything. He has a lot of independence. He takes care of himself beautifully when he's on his own. But the last year, really less six months, we've seen some of this teenage goofiness that I've heard from other people sneaking in, in terms of well, I forgot to check. I didn't bring my stuff. And you know, with the hormone levels, we're seeing blood sugars that we haven't seen in quite some time. I'm curious what you tell parents in your practice, you know, what do you do when you're super enthusiastic kid who is very responsible? And does everything suddenly? Is this stinky teenager who's in a different mindset? Frankly, it really it does seem to happen to so many people.


Dr. Stephen Ponder   33:55

Oh, it's actually very normal. That's that's the normal process of adolescence, you know, they, they're no longer you're smiling little kid, they're they're trying to establish their own identity. And one of the first things they do is to start to you know, they're spending more time out of the house or spending time with peer groups, they get into that phase where they want to be like everybody else, and then you don't know what you're talking about. It goes you go through that phase. Now, some people go through that more than others. Some don't seem to go through much at all. But you know, the listeners here are going to, if not in their own families, no other families for you know, the teenagers were just doing great as children, and then they just totally lost interest in any of their diabetes care or their diabetes management No matter how much they knew. And intelligence is not really the issue so much. It's, it's it is a lot of things that that are very unique and very individually as you said, even within a family you can have two or three responsible adolescence and then one that's just totally, you know, irresponsible, even though they they grew up very well adjusted, and they We're very well supported. That's just the normal process of of growing up as a team. I'll say one other thing, though, and I want to make this point clear. You know, a lot of people can can get comfortable with the two year old that grows up to be 11, doing all these things and and the parents can then start to be backing off of it, perhaps more than they should. And I always use this this example. And it's kind of silly example, but I tell parents, would you let your 11 or 12 year old kid with diabetes, pay your bills for you? or drive a car? I mean, some of these 13 year olds are physically capable of reaching all the pedals and driving a car, they have better reflexes in the rest of us. Would you trust them to do that? Well, most parents who say, Well, of course not. And my comeback is, well, you'll trust them with a life threatening disease, but you won't let them pay your bills, you won't let them drive your car. And so it's kind of an interesting conundrum there. It's because you've been lulled into a sense of security, that they've been doing this so long that because they can do the act of doing this, the actions of doing this, the sound of how they had the maturity to do it. It's like me saying, you know, because I hammer a nail a sock aboard, and I'm a carpenter, the carpenter is a set of skills and experience. It's not individual actions, all strung together in diabetes, because it's involving actions like taking a shot, checking a blood sugar, logging something, and even recognizing something higher low, that's a little bit different than organizing things and working through a problem and solving a problem. Most kids are concrete thinkers, up till about age 16. Now, a lot of them can be shown how to do things. And through practice, and coaching, they can learn how to solve most problems. But if you feel a raw concept that a teenager, without any background, just the concept, most will struggle very, very hard to kind of put an answer together to that all but just a small few. That's because kids are concrete thinkers, and about 25% of adults are concrete thinkers as well, that's been proven in the medical literature for years. Diabetes Care, especially surfing does require a lot of abstract thought, you know, those lines that you see on your sensor plot represents something that you can't see feel or touch, you know, if you're measuring the amount of sugar that's, that's present in the four liters, five liters of your blood, and how it's coming and going. And there, there are entry points and exit points. And that's a very abstract thought when you think about it. And you're trying to say, what are the forces that I can use to influence the rate of entry or exit of glucose into that closed space called the bloodstream, even though knowing the body for sugar and other places you're not measuring the sugar in the liver, you're not measuring the sugar in the in the muscles, and that's where some of your sugar pops up in your blood. It's when you stress, you're shoving sugar out of your liver and muscles in your blood. Likewise, it doesn't measure the count the amount of carbohydrates in your gut because they're still in your gut being absorbed and digested, you're just measuring within that bloodstream. In a sense, that's what matters, obviously, because your brain needs drawn sugar, but you're just not you're a flux manager in Sugar Surfingall about managing flux, and drift. And I say that in the workshops, it's in the book. That's what you're doing flux is a rapid upward or downward swing, a blood sugar's drift if something more gradual or slow, and how you learn to do that over time. And as you develop more skills and confidence is what determines your abilities as a sugar surfer. In the end, Dr. Ponder,


Stacey Simms  38:19

let me devil's advocate for just a moment about the the advice to parents. And I guess I'm going to ask you to play a little psychiatrist here. It hardly seems fair to parents, that at the time, when you say they're not ready to drive a car, right at 11, or 12, or 15, or or operate heavy machinery, why would you let them handle their diabetes? It's not fair that that's the age at which they seem the most resistant to input from parents. So as a parent, we know how do you balance that kid who wants to, you know, who's saying to their parents leave me alone, I've got this. And I get dumber as my kids get older, apparently, I know, a lot less than I used to know, according to them, how do you do that? As a parent? How do you say I'm going to help you I'm going to oversee this just when they're pushing back?


Dr. Stephen Ponder   39:03

I think the hardest part is when somebody's managing a child from age two onward. The person who really owns that diabetes is at that point is the parent. And when you're trying to make that transition and letting them manage that, oftentimes, the parent may may take an emotional response, like, well, gosh, you're messing up my diabetes that I've worked so hard to take care of all these years, and they're going to make mistakes, they're going to fall off the bicycle, you got to put them back on. The thing to do is, and I'm not saying you, the parent does everything until they're 16. In fact, on the contrary, that parent needs to become a sharer, they need to be sharing those responsibilities with the kid. And in fact, they should be there with them not to not to lecture them, not to tell them what they're doing wrong, just to be there to support them. And that's that's a very difficult balancing act for some parents who become accustomed to handling all the decision making, judging everything that goes down and in telling the child what to do and child's obviously pushing back. That's the whole point of adolescence is to break away from the family. And diabetes is caught in the middle of that. So the research and this is this is work that's been done by Barbara Anderson and others, good friends of mine is that shared responsibility up until around age 16 is the key doesn't mean doing things for them. But being there with them, you're still providing them the supplies, you may still be reminding of the things, but you need being there and letting them do it with your you know, with your guidance, or maybe your just your presence is all as necessary, especially, for example, in your case, your 11 year old sounds very capable and very potentially independent. But he would still benefit from having you there in the room, when you're when you're, you know, checking blood sugars and our dosing or making dosing decisions inside you have any questions and he doesn't well, then fine, but at least you know, it's been done. And it's and it's a shared responsibility. He also knows you care, at that point is as well, as opposed to saying, Hey, this is your responsibility, you gonna live with this rest of your life, I've heard that a million times from people that, you know, parents would want to drop that off and a 10 or 11 year olds lab, expect them to man up or woman up to do this. And all they're doing is, is setting a kid up to fail long term. Yeah, they may do it for a few months, or maybe a year or two. But at some point, that adolescent phase kicks in, and they start taking they started risk taking doing some, some experiments and so on. And that's what adolescence is about it is about risk taking. And that risk taking could include skipping insulin doses, eating more food, not checking blood, sugar's all those things, you know, and it can, if the parents aren't there, at least to support them, that's more likely to occur. That's, that's what I've seen over the 30 years, I've been doing this.


Stacey Simms  41:43

Thanks for talking about that. I think that is a really, really important piece of information to keep in mind. And you know, you are a pediatric endocrinologist. I know so many adults do so well with sugar surfing, but I want to pick your brain for one more question if I could, for the parents. And that is, it seems to me, you know, I am I am not a medical professional. But it just seems to me that there is more fear out there for parents than evolute when my son was diagnosed nine years ago. And I think some of that has to do with social media and how things kind of get spread and and rumors get started and different things get out there. But what do you tell your patients, parents about fear? And I guess I'm talking about, you know, overnight, checking every hour or letting kids go on sleepovers or things like that, or even just the the kind of fear that isn't specific in that way? Do you talk to your parents, your patients parents about that?


Dr. Stephen Ponder   42:34

Oh, yeah, I completely agree with you. The rise of social media allows one isolated story at any point in the globe, to go viral, and then frighten everyone else on the planet. You know, in regards to the you know, the one that everybody worries about is the severe hypoglycemia, the so called dead in bed syndrome thing. And then I see this all the time on social media. In fact, I've gotten out of several groups for that out there, because it just does nothing more than whips people up into, into a frenzy that this is going to happen to their child. I've been taking care of kids for 35 years, and I have had people that have passed away from diabetes that are friends that were adults, and some of them that are from two or three of them are eight to say this, we're from suicide. Another was from another was was from severe hypoglycemic event, this individual also had some other hormone deficiencies that made them more prone to have a problem, they were an adult as well. But in general is exquisitely rare. In some cases, and this is never discussed, you never see the details and the stories. Sometimes, some of these kids, these kids can have struggle with their control may not have the proper education or training. Some have some haven't. But you never know. And you really can't question that when when when you get a story like that online. So you have to just take it at face value that such and such loss your life and in there's no way of escaping the fact that that's tragic, completely, totally agree nobody should lose their life to this disease under any circumstances in childhood or even young adulthood In my opinion, but it does happen. People, you know, people have bad outcomes, but it's not something that hangs over my head every night. I try not to hang it over anybody else's head in my practice, and but it really does define people's concerns. I do know that that same fear is oftentimes leveraged as in a way to raise funds for diabetes as well. That's something I've been long critical of. And I've said that to many parents in the privacy of the clinic room that that you know, being told it we're gonna save you from disease we're gonna kill your kid really upsets me quite a bit because my goal for anybody with diabetes is to live a normal life you know, it has nothing to do with a one sees it's really being able to be the person you want to be the God meant you to be. And that's what What I aim for and anything I can do to help you achieve that through coaching knowledge, that's sugar serving whatever, people have to make their own choices, but I've not found fear to be a good motivator. In the long term for for achieving that goal. It's really trying to empower people to teach people they can take charge of this if they want to. But it's their choice. And I'm totally a believer in choice. It's all riddle to the book. It's all choice choice choice. I managed people who have chosen to do only so much with their diabetes, as much as many people listening to this and think that was the otter crazy, it happens all the time. And there are other people who, who spend their whole day managing this. And, to your question earlier about, you know, maintaining sanity, yes, you have to maintain a balance in your life, you know, watching your diabetes constantly throughout the day is not normal. You've got to have some balancing point out there, whether you're a parent or an adult with diabetes, but but fear is my one of my greatest


enemies. And, you know, the, quote, the famous, you know, Roosevelt, you know, you know, all we have to fear is fear itself. And that's very true. My parents were not fearful of hypoglycemia when I was a kid, but we didn't maintain the kind of control we're trying to maintain now, either. And so there was never a thought given about passing away. The fear back then was complications. And privately, my parents, and I even thought that I wouldn't live to see, you know, young adulthood. That was what they knew back in the 60s, because it's all based on information from the 20s 30s and 40s, which was not terribly good at that point. But over the years, I've learned what that was all, you know, that was all just myth and misconception on my part, because now, you know, now I've had it for 50 years, and I hope to have it you know, for many more years to come, I have beat this disease, anybody who's lived any length of time has beat this disease. In fact, I use this I say this to parents all the time, in the in the natural world order, I should have died 50 years ago, I should have you know, without insulin, but thank God that we I live in the era that I live in, I live in the country la live ended, I have access to the supplies I need. And I have the intelligence and the access to the resources, not that not everybody has I realized in this world to take charge of this but but missing element is that desire to do so. And I've been fortunate to have that desire. And I try to, I try to promote that, that attitude with anybody I come into contact with, whether it's a patient or a friend, or an acquaintance that has diabetes, but ultimately, we all have to make our own choices. And we all have to live with the consequences of those choices.


Stacey Simms  47:37

That's fantastic. I mean, what a statement as you're celebrating or marking, I'm not quite sure what the word is. But I'll say celebrating 50 years with type one, what when, when you look to the future here, what excites you? I know, are you testing a new kind of insulin? Do you look at different kinds of equipment, what what excites you about diabetes care, and in the next 50 years,


Dr. Stephen Ponder   47:59

my feeling is that the more we can educate, teach and provide support to people with diabetes, the better off the world will be, I'm seeing a troubling trend of late have more of an emphasis on technology and devices and new drugs, as opposed to investing more time and quality education, self management education, because it said before, you know, it all comes down to the choices we make, hey, I'm using a new insulin now that just happened to come out recently. It's an insulin degludec it has a much smoother action curve for me as a type one adult, I don't have any glows at night are even close to lows at night, which is one of the known consequences of that medication. downside is it's a new drug, which means it's more expensive. I'm excited about all the work that's going on with you know, encapsulation projects for islets were for artificial pancreas is and so on. My only concern is cost of these things and costs in terms of investment in time to the patient as well as money, and who will pay for these things. And I foresee there being almost this this multi tiered level of patience in the future of people, the haves and the have nots, as as our cure, quote, unquote, you know, becomes more and more costly. But you know, I say this to parents all the time about the word cure. The word cure is Latin, it comes from the word Curie, which actually means to care, that to be concerned for or to attend to. And in that literal sense of the word cure. I've been curing diabetes for 50 years and anybody who's still alive listening to this, and has diabetes has cured diabetes since they were diagnosed. The Romans never really understood disease in the sense that we understand it today. So they just felt that if they just took care of you just you know attended to your needs, that you would your body would would heal itself. And in a way, you know, the daily care I've been taking since March 1 1966. In terms of insulin dosages, checking my blood sugar or urine sugar back in those days in some fashion and making some decisions primitive as they were back in the 60s 70s and 80s, more advanced as they are now in the in the in the in the new millennium, is why I'm still here. And that plus the grace of God that I've not had an accident or had some other illness befall me. Those are the things that and I'm very thankful that I'm just happy I wake up every morning, I really am grateful when I get up every day, knowing that I beat this disease for half a century, and there are people that never had diabetes that haven't lived that long. And I live longer than so I have nothing but grateful I am nothing but grateful. I don't waste my time, being resentful being mad at this disease. I'm totally at peace with it. I know people still struggle with it, who are listening to this. I can't tell them they should be at peace. That's something yet that's a very personal thing to say. But I am I'm very much at peace with this. And if I pass Tomorrow, I will say I thought that my life was well lived with or without diabetes.


Stacey Simms  51:05

Dr. Ponder, I can't thank you enough for joining me, I was looking forward to an interesting discussion about blood sugar maintenance techniques. And instead, I just feel like talking to you has been a light today. Thank you so much for sharing so much time with me and with my listeners. I really appreciate it.


Dr. Stephen Ponder   51:23

Thank you. Thank you much for your time as well.


You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  51:36

I told you at the top of the show that Dr. Ponder has a free copy of sugar surfing for newly diagnosed families for newly diagnosed people. And that information is at Diabetes, Connections calm or hopefully linked up in the show notes as you listen on different podcast apps. One of the funniest things for me going back and listening to these older episodes. This is five years ago now is the terror in my questions about the teen years and Benny Benny is 11 years old when this interview happened. He is now 16. And I gotta tell you, middle school was the hardest. You heard me talking about there but is a Wednesday inching up and it's insolently it's going way up and his brain fog. And that was all in middle school. I can't say it's been completely smooth sailing since then. Because when is diabetes ever smooth sailing, but it certainly wasn't the, quote teen years as much as the tween years for us that were an issue. Of course, we're not at the teen years yet. So I probably shouldn't say anything, I'll knock some wood and will knock on my head and all that good stuff. All right, coming up next week, I'm going to be talking to a family with a child diagnosed during the pandemic. Can you even imagine? It's hard enough to have your toddler she was three years old, this little girl diagnosed at all. But when you can't meet up with other families in person, you can't go to conferences, you're isolated at home. There's so many families that this happened to in the last year. And I'm grateful that they decided to share their story. So we will be talking about that next week. thank you as always to my editor, john Buchanan. It's from audio editing solutions. Thank you so much for listening.


Unknown Speaker  53:02

I'm Stacey Simms.


Stacey Simms  53:03

I'll see you back here in just a couple of days until then, be kind to yourself.


Benny  53:12

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

Apr 28, 2021

Ben West was a key organizer and architect of Nightscout and OpenAPS software. Even after all of the DIY and commercial development of the last ten years, he says we've barely scratched the surface of removing the mental and physical burdens from people with diabetes. Among those burdens, he says, is what he calls the onus to bolus - the responsibilities of diabetes that even the most advanced current software can't totally relieve.

Ben is now the CEO at Medical Data Networks which has launched its first venture: T1 Pal. 

Read the Nightscout email Stacey mentioned (click here) 

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

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Episode Transcription (rough draft) below

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Stacey Simms  0:00

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


Announcer  0:21

This is Diabetes Connections with Stacey Simms


Stacey Simms  0:26

this week talking to someone who is deeply technical, but also deeply thoughtful, who has been an incredible part of the Do It Yourself movement over the last 10 or more years. But who says we've barely scratched the surface of removing the burdens mental and physical from people with diabetes. So welcome to another week of the show. We aim to educate and inspire about diabetes with a focus on people who use insulin. I am Stacey Simms. And yes, this show is already a little different sounding here at the top no big intro or tease. And that's because my interview with Ben West is massive. It is very long. It is the longest one I have done so far on this show. But it is well worth your time.

I am so excited to bring you this interview with Ben Ben West was a key organizer and architect of the Nightscout and open APS software. He is now the CEO at medical data networks which has launched its first venture T1Pal, I think Ben influenced or work with or sometimes both just about every person I've talked to under the we are not waiting umbrella. And if you're not familiar with that, if this is your first episode, welcome, but we are not waiting is kind of the rallying cry that became a hashtag back in 2013. And if you are new, I use it as a keyword you can search for it all one word, we are not waiting over at Diabetes and see every episode that has featured those incredible do it yourself, people the community that really rallied together and push the technology side of diabetes forward, I believe many many years ahead where it would have been otherwise, as I said, it is a very long interview. But you know, it's a podcast, listen in chunks. Stop, start, you know, however you want to do it. But please, I really hope you'll listen to Ben because he has so much story to tell and a lot of thoughts on how diabetes care really needs to improve.

In the short time since I spoke to Ben, there has been a bit of a discussion within the Nightscout group about his business. It is part of an ongoing debate about the future of Nightscout and the future of open source in type one, Ben has the full support of the night scout foundation. In fact, they sent out an email on that and some other issues. And I will link to that in the show notes. I think it's a very good read. In addition to touching on this issue, it is a great way to catch up on what's going on in that space. So we'll get to Ben West in just a moment.

But first Diabetes Connections is brought to you buy Gvoke Hypopen . And you know when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar and in the case of very low blood sugar, why we carry emergency glucagon, there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes and click on the Gvoke logo Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke slash risk. And this is a good time to remind you that this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Ben, it's great to talk to you. Thanks so much for jumping on and sharing some time with me and my listeners.


Ben West  3:55

Oh, thank you, Stacey. I'm happy to be here. Thanks for inviting me.


Stacey Simms  3:59

I'm not even sure where to start. I have so many questions I want to ask you and there's so much history here. So maybe we just start if you don't mind. Back in college when you were diagnosed. You were student right? You were young adult.


Ben West  4:12

Yeah, I was a college student when I was diagnosed and I had all the classic symptoms where I you know, I was going to the bathroom a lot and just didn't know what was happening. My diagnosis story is I went through this for probably a week and one night I realized I had gone to the bathroom like seven times in the one night and I realized that means if that's once an hour like what sleep did I get last night. I'm nowhere near eight hours of sleep. This seems like a serious problem. So I went to a health clinic in my college town. And they said well, you're a skinny young adult, so we don't know what's going on with you. Maybe you did eat something and you didn't tell us I wasn't eating anything either. And they sent me home with some pills and said call us in two weeks. Someone through the grapevine heard that that didn't sound quite right actually came and interrupted one of my music lessons and said, you know, you need to go to the hospital there. Oh, wow, they're expecting you there. So I went to the hospital, and they checked me in over the weekend and diagnosed diagnosed me with type one. Wow,


Stacey Simms  5:13

you were lucky, right? Lucky that they interrupted your lesson there.


Ben West  5:16

Yeah, you know, I mean, I've heard a lot of stories during the work that I do. And yes, as diagnosis stories go that I you know, that's pretty mild. Yeah,


Stacey Simms  5:26

I guess I should ask you some technical questions from the very beginning. What were you using? I assume that in 2003, you didn't immediately start tinkering with an insulin pump. Right? You You went on a more traditional routine at the start?


Ben West  5:38

Well, I actually had to drive 45 minutes to clinic and Little Rock house in a different part of Arkansas going to college. And I had to drive 45 minutes to get to an endocrinologist and the endocrinologist at that time that I thought I was lucky to be getting into the specialist where they actually deal with, they actually specialize in diabetes here. And I met with the nurse, the PA, and the representative from Medtronic was actually in the room. They actually said, You seem like a smart young lad, we'd like to get you out a pump as soon as possible. And it turned out as soon as possible was like nine, you know, nine months later. So I went through the whole syringes and shots and meters and got on the on the pump. But at that time, they actually told me Yeah, the benefit of going on the pump is dispenses insulin automatically. And in the future, we're going to have CGM. There's some CGM already in the works. Those will be here sometime. And then when you get the CGM and the pump combined, it does like all these things together, right, like so I understood right away what they're talking about in that office very early on. Okay, you got you can measure glucose, and you got this pump. And in theory, it should be doing all of these things together. At that time, they even said, You know what, they even have a patient in California right now, it's got a fully implanted version. So sometime in the next five years, we're gonna have a fully implanted CGM insulin pump combo, it'll do all the work for you. This is all just temporary. That's what they told me.


Stacey Simms  7:01

2003 Yeah, just to be clear, though, Ben, the Medtronic rep was in the room with you at your doctor's appointment?


Ben West  7:09

Yeah. Wow. You had some introduction? I was actually I was glad they were honestly, that certainly seemed to be the, you know, take these pills and call us in two weeks approach.


Stacey Simms  7:20

Sure. Yeah. It also beats a bunch of other people who had their doctor say five years to a cure. I mean, yeah, you know, there's a lot of really bad ways to be diagnosed and to have those first conversations, but man, that's fascinating. Who was the person in California who had an implanted pump and CGM? What was this like, fantasy made up? No,


Ben West  7:39

I think I know, I believe him. I, I've toured the Medtronic facilities, again, during the work that I do, and they've invited me over, and they have a hallway of all kinds of awesome stuff that, you know, never made it to market or, you know, there's a lot of cool things that go on behind the doors. I'm still using a 515. I think that was in 2008. So certainly, I I'm a big believer in what they do. There is a lot of potential that I think is clearly been untapped behind this technology.


Stacey Simms  8:12

So fast forward nine months, you jump on to your insulin pump. It's not hooked up with a CGM. At the time I would assume.


Ben West  8:19

No, it the CGM didn't exist yet. Yeah, it wasn't on the market. Yeah.


Stacey Simms  8:23

What was your experience? Like with the pump?


Ben West  8:25

Oh, it's okay. It's fine. I preferred it to the shots. But everything's got trade offs. Right. I had at the time I, you know, was going in or wasn't music major. And I so I had performances that are assessed as part of my official grade. And, you know, I'd go in for these performances, and some one of the teachers would tell me hide that thing. You know, they had wires hanging out, right? And I told him, you know, I'm not trying to hide anything, I shouldn't have to hide it. And he told me, You shouldn't show it off. I thought, wow, here I am going for a performance. And that's, that's the last thing I want to be thinking about right now. Sheesh,


Stacey Simms  9:00

did you win that fight? Or did they make you hide it?


Ben West  9:03

If you're a college student working for a grade? Yeah, you're gonna, you're gonna put it away real fast, right? I mean, that's terrible.


Stacey Simms  9:11

What made you start thinking about tinkering with stuff? Because you started doing that on your own is my understanding, right? This was before you met a lot of people in the community that you started, I don't want to say taken apart, I'll let you tell the story. But you started doing this stuff in 2008 2009,


Ben West  9:28

the winter of 2009 into 2010. I remember that's when I started with a different focus. Actually, I don't know if you've talked to Scott hanselman at all, but he's, he's known. He's known for saying that every person with diabetes ever, right? The first thing they do is they start working on on something less less than the burdens here. And actually, that was true, right? As I was diagnosed, I had some experience as a computer science minor with some programming, and often my side projects, and I remember I built a dashboard. Actually, in 2003, right after I was diagnosed, that allowed me to enter in all the information into a database, right? Because I was walking around with, you know, three by five index cards, trying to write down all these carbohydrates and insulin injections. And it was getting really tedious. But I did that for years with pen and paper and pencil. And I thought, surely, why are the doctors giving me a hand drawn curves on napkins? Like, what is that about? Why are they sketching on these pieces of paper and the way that they were explaining this to me in the hospital, I thought they were going to show me a full on simulation that showed how my body was working. I've been watching too much Star Trek.


Stacey Simms  10:44

Well, you know, I'm with you. We expected things like that, too. When you said you made the dashboard. What did you use for the interface? Was it computer was it?


Ben West  10:53

Yeah, it was this was before web 2.0. This was all PHP and HTML. And I realized I was horrified. At the result, I realized I was never going to use it. It was a wall of inputs, where it's just like tons of inputs. And I wrote for times, and dates and readings. And I realized there's no way I'm going to use that. Look at it. Why would anyone use that. That's why I'm going to use pen and papers, because they're the software for this is very difficult. Then web 2.0 happened, there's a bunch of things in the 2000s, as we approached into 2010, that I, you know, I graduated school, I got into industry moved to San Francisco, the hardest Silicon Valley doing, you know, web dashboards for companies, professionally, where we're really solving people's problems where if you have this complicated problem, you can share the link with a view of that problem, and the tools for solving that problem with someone else. And that ability to share that link made the possibility for solving problems collaboratively possible in new ways, transformative ways that really fundamentally change the workflow for solving problems. So that idea really got into my head professionally, as we kind of approached 2009 in 2010. I had tried my first CGM about five years later, right, so around 2008. And the experience with that CGM was was not great. I had to go through insurance, right, they said, I had to get a new insulin pump to get to the integrated system that would read onto the insulin pump. The insurance said, we're not going to pay for that for this new one. And not only that, but according to our policy, you should never have gotten one. So that seems like an issue. Yeah. So it took us It took another nine months, right. And, you know, it goes to the appeals board. And the appeals board comes back and says no insurance, you should, you know, that's medically necessary, she should pay for it. So I finally got the pump in the CGM. And like a lot of people that I see on social media that are excited by the promise of the benefits of this new technology, I tried to really make it work for me, right, I got all the glue out. Skin all louder than the adhesive and I got the I got it covered, right with all the contact stuff. And then I'm going out for yoga, right and it's hot, and I'm doing you know, bendy stuff. And you know, you take off your shirt is a lot of people do. And then you're in a shirt, you realize you're the only one with like all this stuff. And it's like, it's not just one thing, it's the air, you got your pump over there. And he got your CGM patch over here. And it's like, it's not working out like at night. It's itchy. You know, it tickles. Except it's not tickle, it's you realize it's, it's itchy. And then you realize to your heart that that's actually the chemical burn that's happening with adhesive in your skin. And then the things alarming and I'm getting sick of the readings, I get data, what they call data overload, right where it says 240. And I feel like you know, I don't feel very good. And I take a bunch of insulin. And then, you know, an hour later says, well, you're 230 or whatever. So I don't like that. I still don't like that. So I'm going to take even more insulin. And then yeah, three hours later, you know, your doubt at 60. And the things reading 110. Right. And, you know, you're really not feeling good. This thing, made my life a mess. And I decided I'm gonna have to quit. And I was horrified that I was not going to use this thing that I had gone through so much effort to get to this point to be able to use it and that I wasn't going to get any benefits out of it. And the slap in the face for me as someone that was working on these on these systems of systems that were connected through the internet, and seeing the innovation take off and seeing the technology transform, collaborative decision making. The slap in the face for me was that this data was stuck on this little two inch display in my pocket. And there was like there was no way to get that data where other people could see it or like my doctor could see it where like app developers could put it into the simulator and make a simulator if one was missing, and 2009 and 2010 that really didn't sit with me anymore. So I thought apparently I have some skills here. And, you know, maybe I should try applying them just to see if I can get a time series. You know, wouldn't that be neat? If I can just get a little time series, you know, off the device that I use? Wouldn't that be kind of neat?


Stacey Simms  15:11

All right, I'm gonna stop you there. But as the time series,


Ben West  15:14

just the normal chart that we see where we've got data points along some time. So you've got three hours of time on the chart, just like we see with any other glucose traces data, you've got one dot every five minutes. And that happens, because you get every dot that you see is one of those data points. If you can get a bunch of data points over time, you can generate that time series.


Stacey Simms  15:37

Now I know a lot happened, you know, in those years between 2008 or 2009. And then 2013, when you started a tight pool, can you take us a little bit through that time, how you met people how you got connected with the diabetes community?


Right back to Ben answering that question. But first Diabetes Connections is brought to you by Dario. Health. And you know, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels. Find out more go to my Dario comm forward slash diabetes dash connections. Now back to Ben answering my question about how we found and got connected with the diabetes community.


Ben West  16:48

I need to get more serious about my problem solving. And that means if I want to help, as soon as it seems to get a lot of ground to cover, so if I need help, I need to ask a well formed questions in a targeted way. And I thought, you know, if I need help, the people that can help me are probably other people with diabetes. And so I started looking around on all kinds of social media, I was on to diabetes, for the really early platforms, and several others, there's diabetes has that and there was there are a couple of organizations before Twitter was even really becoming popular. So I kind of reached out on some of those and found some people disagreed with the things that I was expressing they, some people thought that I should just feel grateful for the devices that I had.


Stacey Simms  17:28

I remember this, there was a lot of movement at that time, because I was on some of those boards to where it was, Hey, you know, it's it's okay for now. Like it's better than it was we're not testing with urine. We're not doing right. We're things are changing. Why do you want so much data? He was an interesting time. I didn't mean to interrupt you. But I remember that.


Ben West  17:47

Yeah. It's interesting that for you to say that, thank you for remembering that that really puzzled me. It emphasized for me How important was to frame the right questions. Partly because of that those disputes, I started really focusing on the advocacy of data access. And that became my touchstone issue. Well, up until very recently, I would say, well, I've shifted recently towards embracing language matters a bit more. One of the things I've learned over the last 10 years, I think, is that language matters. And in this data access issue, are actually the same issues with the same solutions. And we will get into that. But


Stacey Simms  18:23

yeah, we'll definitely talk about that. And just trying to, you know, to kind of get the timeline here, but yeah, so you, you've got this really interesting movement within the community, but it's a small part of the community. As I said, I was there. I don't think I grasped it at all. I mean, I had a little kid, my son was a toddler at the time, you know, he was diagnosed in 2006. So I was getting into all of this, but I was definitely more of the rah rah cheerleader, kind of let's do the Big Blue test. If you remember to diabetes, you probably remember that rather than how can I free the data because we didn't have a Dexcom or a CGM for many years.


Ben West  18:53

So at that time, right at the time, I was already familiar with things that have happened in the tech world, the things that, you know, the worldwide web, the web technology that we use, has gone through this where there's lots of companies involved, some of them compete. And in fact, I remember on one of my job interviews, I was shocked to hear the interviewer say, Oh, yeah, we're partners with the, you know, these other people. I said, Wait a minute, are they competitors for this other product? And they said, Yeah, you know, we compete and we cooperate. We do both, you know, it's not, it wasn't an issue in other industries. And somehow innovation that that's unlocked. Now, we have finance, we have healthcare, we have every sector of life we do online now. And if you're not doing it online, it's because you're doing it on your mobile. And actually, it turns out that's done online also. Right, yeah. Behind the scenes. And so that's the same transformation that I saw happening everywhere, regardless of the problem space of even for the most complicated problem spaces. And so I knew that what we need the thing that made that possible on the web, and on the internet on the web, it was Use source. So any web browser that you have, there's a function where you can go in and edit. And you can say view source. And it shows you all of the source code that's used to present that web page for you. It turns out that that's a critical part of that innovation to market pipeline, because more people are able to access the data that makes the thing go, that DIY access, if you will, for the web, that view source that allows anyone to get access to it, that does a couple things. One is that it gives more people access to making things and that network connectivity is what allowed a lot of innovation that we see, in 2008. Nine, that's when I started talking about data 2010. And yeah, through 2013, I started to code switch, which means that I talked about data in the most austere terms possible, in order to attract those other folks that already understood how important that was. So that together with them, I could look to build this ecosystem so that people would start to get it, I knew that if we could deliver a couple of applications that utilize this open architecture, this open ecosystem, the feature set would grow, the popularity would grow. And that would start to shift the things that people were talking about that people would start to talk about, we want access to the data so that we can get things like this, we want access to the data so that we can have bring your own device, we want access to the data so that we can get these innovative systems on the market more quickly.


Stacey Simms  21:37

So put it in perspective for me if you could, one of the touchstones that I come back to again and again, is that D data meeting in 2013? That diabetes mind and Amy tendril put together where we are not waiting was written on the whiteboard. Where were you during that time?


Ben West  21:54

Yeah, I was in the room. There are about a dozen folks in the room. Sarah creepin. Was there a Jana Beck was there, Joyce Lee? Was there, Amy tedric was there? You know, Howard look was there late despereaux. Was there john kostik. And, you know, a bunch of Brandon arbeiter, a bunch of those core typu folks were there. The takeaway, as it's been said many times before, was, you know, john kostik, was there talking about how he had utilized this technology to get some benefits for his son, that was his big story was I really care about my son is my job to deliver these benefits, I'm going to do it somehow, whatever it takes, that's what I'm going to do. And Layne came along and said, You know, we've got this experience with operator fatigue, in control rooms with complex processes that never shut down. And here's the things that I've learned. And here's the display that I put together, and I call it nightscout. And this was before, what we now think of as nightscout didn't really exist. This was before that this was like when there were separate pieces, and like different projects, everyone was just blown away by nightscout. In particular, this idea of what john was doing, getting the data and what Lane was doing, having a really smart interface for it, that and having it operate in real time gave us a really crisp, clear vision of what are the kinds of benefits that we should be talking about that we should be expecting that we should be seeing in the next 12 to 18 months? What is it feasible to make technically. And it turns out some really cool things were technically feasible.


Stacey Simms  23:26

When I speak to people from the DIY movement, or you know, whatever you want to call it. When I talk to you folks, over time, I have learned never to really ask well, what do you do? Right? I know, it's very, very collaborative. And so I stopped asking that question. But I would like to know, if you don't mind, could you share kind of what you were working on? Well, that's


Ben West  23:47

first t data, I was tide pool had just gotten started. So I was actually employee, I was one of the very early employees tide pool. So I was working with tide pool as an engineer trying to launch the MVP, our very first shipping product, we were trying to get that up off the ground from prototype and into production. So I was spending a lot of time on that. On my own time, I was spending a lot of time you know, the reverse engineering stuff, I was spending a lot of time really focusing on on Medtronic pumps, I realized that there were a bunch of devices. And I thought about the network of each kind of device needing some code to work with it. And I had a piece of code for every type of device. And so I was focused kind of on that making sure that I was framing Well, well formed questions, putting them out there saying here's a project just to talk to the Omnipod. Here's a project just to talk to the Dexcom. Here's a project just to talk to the pump. And then here's the thing that can kind of use them all. here's here's some of the title stuff. And so I didn't actually have access to CGM myself, I didn't actually have access to a lot of working stuff. What I had access to was my own research on my pump stuff, which was my main focus and then I had already started networking out and contacting Layne and these other folks, you know, Scott Lybrand and Dana Lewis, meeting all these other folks, and not just in diabetes, you know, for example, Dave bronkart and Hugo compost, I met them going around doing things, advocacy work on data access and privacy and sharing, I would meet those folks and connect them also to the diabetes folks saying, not only is this a unique problem in diabetes, getting your access to your data in healthcare is a problem in other disease states as well. And now what I've come to learn is not only does it affect healthcare, it affects other industries as well. It affects the agriculture industry. Right now, there's a huge issue in the agriculture industry, with farmers not being able to digital tractors and farmers not being able to get their data off of their digital tractor and where it used to be just like the syringe and it used to be a mechanical pump. It used to be a simple mechanical device that anyone could learn about and do it themselves right in front of them, it was obvious how it worked. And that is one of the risks with the adoption of digital technologies. without some support. Without enough documentation, it may not be obvious how it works. So after that D data in the winter, spring started to come around the next year, and I wound up leaving tide pool around April. Now Brandon arbeiter from typo was my roommate at the time. And I remember that about a week after I left tide pool he actually came home with with a bag full of goodies, he came home with a new SIM card, a new cell phone, and he showed me his laptop. And he had all these emails with like source code attached and instructions and websites. And actually, it was kind of a big mess. But I was very excited because this was for the first time all of the pieces in one place. This was the legendary nightscout rig finally in my hands, so I knew exactly what to do. I helped him set up nightscout. I didn't have a working CGM at the time and setting him up with nightscout was actually what convinced me to start using a CGM again, because when I quit, I decided I'm never going to use a CGM. Again, it's not worth it for the discomfort and the quality of life until I can control the data until I can get the data off with nightscout. that possibility came true. And so Brandon came home with that rig. And I helped him set it up. And then I helped set up a bunch of other families. And I converted those emails and those attachments, I converted those into a set of webpages for the very first time, and organized all of the source code. Again, on GitHub, which is the social coding site, I organized all of those projects into well framed projects, the way that programmers would work with these things very, very natively. Very idiomatically. And so I put those up on the web on GitHub, and started calling people over to them. And I showed James wedding and Kate Farnsworth, and Christine dealtrack. Some of these folks, I showed them the new web instructions, and actually walked them through for the first time, once people were able to go on the web, and do a Google search and find it and get all of the instructions in one place. That's when the installs really, really really started taking off. That's when the Facebook group went from 100 to 1000s. And the rest is history right?


Stacey Simms  28:35

down. And this is probably a good time to just say that. I've spoken to several people from the the we're not waiting community, and one of them is Jason Adams, who tells the whole story of the Facebook group, and you know, that community and how that came to be. So we'll link that up for sure. and a bunch of other information. But I remember that too. And it just seemed like he was unbelievable to some as in like, wow, we can finally see this and can you believe we can do it, you know, ordinary people. And you know, you do need to, you know, get some help, but you can do it, you can do it. And then there were other people in the community saying, I can't believe we haven't been able to do this until now. Like I knew we could do this. Like, it was very funny to see the people who really understood kind of the back end of things, at least from my perspective. And once that ball started rolling, it seems like it was just moving really quickly. It was a very exciting time. Do you remember it as one?


Ben West  29:24

Oh, yeah, I mean, tide pool had a one of their global, they pull everyone from across the globe in the area everyone saw about once a year. And so I got to see a bunch of those folks again, and they were all hanging out. And I remember we were on Facebook just watching Facebook blow up. I mean, they're the posts were coming in, he and your grandson was watching this thing. We mocked up little videos of like, here's the next step that we're going to make an automated system with, you know, this is just the beginning and we didn't post it but we were just in awe of the energy that was coming. In behind the post describing nightscout. I mean, here we have what's essentially a webpage. And there's so much momentum behind this project that people were saying things like we're paying it forward, they were saying things like, we are nightscout. And I've never been part of a technology project where people start identifying as the project, I expected the conversation to change, I laid a lot of a lot of stepping stones in place, to enable the conversation to change that we can speak clearly, as people with needs that are unmet, here's what our needs are. But I did not expect people to identify that I am this products that really blew us away.


Stacey Simms  30:42

I'm gonna come back to that, because I think diabetes is very personal. And it was one of the few times where people felt like they not only had a stake in it, but they were also being heard. But I do want to ask you, we've done lots of episodes on nightscout and openaps. And please feel free to jump in if there are things that you would like to share. But you mentioned when we were prepping for this interview testifying for I don't even know how to say this testifying for the 1201 federal DMCA exemption hearing.


Ben West  31:08

Yeah, that's right, is that? Well, like I said, one of the things I started to learn, when I started talking to people, what I would code switch into the data governance language, I started to find that there's other people working on this. There's academics, there's people in other industries, and there's legal scholars. And it turns out, FDA has a role in a lot of what we do in diabetes. But it turns out, there's other regulators that deal with other parts of life, the Library of Congress regulates certain things. And one of the things that they do is they manage these 1201 hearings, our carve outs are ways for the public to say, here's this regulation that exists. But I want to testify to get relief from the regulation that does exist, and the regulation in question, this concept of DMCA, the Digital Millennium Copyright Act, and in part of that regulation, has to do with the technical protections, the technical protective measures that manufacturers place inside of their devices, and the consequences for attempting to manipulate that device, potentially to overcome such a protection. Now, the issue here is that this is a technical means that some firms use to make it difficult to get the data on a very practical level, the one of the things that they can do is they can say, well, we're putting a technical measure in place so that only authorized users can get access to the data. who's an authorized user? Well, the manufacturers, of course, is the patient an authorized user? Well, maybe maybe not. Right? That's kind of the debate that's still playing out to this day. One of the exemptions that I went to testify for was that for medical devices, if what you're seeking to do is to get a copy of your own data, there should be no penalty for doing that. And that exemption was granted. Pardon my ignorance,


Stacey Simms  33:03

is that exemption granted for you? Or was that something that was more blanket for


Ben West  33:07

the Americans, all US citizens,


Stacey Simms  33:09

you think that would be front page news? That's amazing. Very, very cool.


A lot more ahead with them. But first Diabetes Connections is brought to you by Dexcom. If you are a veteran, the Dexcom gs six continuous glucose monitoring system is now available at Veterans Affairs, pharmacies in the United States, qualified veterans with type one and type two diabetes may be covered. picking your Dexcom supplies up at the VA pharmacy may save you a lot of time to connect with your doctor for more information. Dexcom even has a discussion guide you can bring with you to your doctor, get the guide, find out more about your eligibility go to slash veterans. Now back to my conversation with Ben West.


What is nightscout? Right now? No, the commercial offerings have changed a lot. He was title submitting loop to FDA. What is nightscout as a service offering right now or is that even the right word offering?


Ben West  34:20

So do you want to know about nightscout as a service, or just nightscout? What is nightscout as a whole?


Stacey Simms  34:25

What is it right now? What is it? Like? How do you define it right now? Because it's not the rig? Is it still right? It's not like you're plugging into this into that. I mean, what how it's kind of changed in the last few years. So I guess I'm not sure what I'm asking. I pardon my ignorance there. But


Ben West  34:39

when you bring up the rig, you say what is your asking what is nightscout? right now and you mentioned, you know, for example, it used to be the rig.


Stacey Simms  34:46

That's what I think it was nightscout is I think of people printing a case for this for that and then and then you got to be careful because the wire might break at some point.


Ben West  34:55

Sure. So I think of nightscout as kind of two things. There's the philosophic Typical version of nightscout. And then there's like a piece of software that also exists, right? So and what I mean by that is there's the nightscout ecosystem, right. And this includes the people that are using nightscout. It includes the coaches, the school nurses, the teachers, the clinicians, the parents, the guardians, the caretakers, and the patient's themselves, right. And so there's this thing, that is the network of nightscout. And then there's a piece of software. And in fact, there's a whole bunch of pieces of software and devices, right. So there's the cgms, whether it comes from Abbott, or from Lee Ray are from Medtronic, right? There are the insulin pumps, whether they come from Medtronic or maybe Tandem or maybe Insulet, in the United States. And then there's other kinds of devices, too. There's like cloud devices, right? So some of your Dexcom data goes to Dexcom Cloud, some of your Medtronic data goes to carelink, Medtronic cloud. And so nightscout, there's a lot of ways for data to exist in the world of devices, connected devices that data can come from. And then there's this central hub in the cloud. And that's the piece that usually I think of as nightscout. When people say, Oh, I'm going to go file a bug report on nightscout, or developer says, I'm going to go fix a bug on nightscout. Really, they're talking about this cloud native piece of software that draws the graphs that provides you with a web page, the API that all of the other devices then connect to, right. So that forms when all when you have multiple devices that are talking to nightscout, all of a sudden, you have this nightscout network. And the thing that we think of as nightscout is what I like to think of is that cloud piece of software right in the center of it all.


Stacey Simms  36:44

So this might sound silly for someone who hasn't used it, or doesn't really understand what is nightscout. in that setting, as you mentioned, what is it used for? How does it help somebody with diabetes,


Ben West  36:58

one thing a lot of people talk about is data governance, being able to control your data. And that's certainly true, I have found that the most profound thing I have found is that it's really this, this concept of sharing, when you invoke the buddy system in your life, you know, as you travel through life, is it during the transitionary events, when you start a new therapy, when you have a special day, and you want some help, and that these are the kinds of things that people are sharing, it used to be when we first started nightscout, almost 10 years ago, seven, seven years ago, it was all about let's at least share what we know about the past. You know, let's share the alerts and alarms. Those are retrospective, right, you have to have past data to generate an alerting alarm. And that's kind of like current and past data. And people would use that the classic use case there that that made the news was when parents go to the office, and the children are going through the school day, and maybe going through mixed authorities and different just different realms of concerns across as they travel through life. What we have found since then, is that it's not just the retrospective data in terms of keeping current that people want to share. It's actually every aspect of diabetes. Surely, if you had the technology and the power, to share your alerts and alarms with me, surely you can share the tools to help me prevent those alerts and alarms. That's where the future is going is we're gonna see services that allow sharing, not just alerts and alarms, but managing every aspect of diabetes as we transition through every phase in our lives. So this is a really exciting time to be in because nightscout is years ahead of some of the big vendors here, providing feature sets for all of those things.


Stacey Simms  38:47

It seems like that's a good segue into medical data networks. Can you talk about what that is and what the goal is? Sure.


Ben West  38:54

So I've always been interested in this concept of the power of networks. That's one of the things that really got us interested as we started building out the nightscout ecosystem, making sure that we could talk to connected insulin pumps, making sure that we could talk to connected CGM, and talking to people about the data governance and the technology required to do that. In the past, I worked for a company called muraki. They made software defined networking. And that means if you've ever used Wi Fi in a public space, like Pete's coffee, or an airport or something like that, my software has protect your privacy, govern your use of the network govern the speeds at which you can use the network even govern which sites you can visit. And this is very complex techie stuff, but we made a simple dashboard that allowed people to share the process of managing that experience. This is old hat for us. So we created this company medical data networks. What we want to do is wrap up and respect all these years of innovation that have happened in the DIY space and we want to make Set the norm. We don't think that any of this is controversial at this point, the idea that you'd have remote monitoring, the idea that open source would be a fertile ground for the innovative wetlands, right? Some people like to call it. And so that's part of what we're doing. And so now we're offering nightscout as a service. And we make nightscout. press button easy. And we're working with the FDA to make sure that we can operate it fully compliant.


Stacey Simms  40:28

That sounds to me like you're trying to offer kind of a DIY the nightscout for people like me who, when many others who were you know, reluctant to do DIY stuff? Is that what the service is? It's a Is it a paid service that I can kind of this is an awkward way to say, like commercialize or make simpler what nightscout has been?


Ben West  40:48

That's right. So we want to offer Nightscout as a service and reduce the barrier to entry, make the entire experience much more reliable, predictable and consistent. And we want to increase the benefits of remote monitoring for everyone, whether that's caretakers and parents or temporary guardians, or whether it's just people that just want to find their diet buddy on social media and share it with them.


Stacey Simms  41:10

Thank you. So tell me a little bit about what T1Pal


Ben West  41:13

is? Sure, I'd love to. So T1Pal is our first product from medical data networks. And it leverages all the experience that we had building nightscout. So T one path is Nightscout as a service. So you can think of it as the easy way, it's a new way to get started with nightscout. And it eliminates all of the server and database administration and DIY craft. So it makes it as easy as any other platform where you simply sign up, you pay for your subscription, and you have access to all of the benefits that Nightscout brings.


Stacey Simms  41:46

Is it on the app store? Is it something that people buy? How do they get


Ben West  41:50

Dutch the website to one, you


Stacey Simms  41:52

can go on your browser. Either commercial products have kind of caught up I mean, I can remote monitor my son with a Dexcom. And you know, t slim or Tandem has an app that is on my son's phone. And I guess eventually I'll be able to see that Omni pod is sharing more, what makes this one better?


Ben West  42:11

Well, there's a lot of things. One is the if we go to the connectivity piece, right, this idea of interoperability, and the idea of bring your own device, when we talk about sharing, there's a the base level that I start with is bring your own device I want to share with myself, I want to share I have this Samsung or Apple or whoever created a brand new thing, you know, last week, it's a shiny new thing, I want to go get that and bring that into my therapy, that's going to be part of my system. Now, that's really tough for a lot of these vendors I've been just I've been it's ago, I was looking at a brand new error that someone posted that I've never seen before on, you know, a Dexcom app. And it says it's incompatible in some brand new way. So this idea is really tough for the classic manufacturers who developed these really austere quality systems, right, and those quality systems control for change in the system. And the idea is you want to control your own destiny, and eliminate any possibility of variation. And so in a lot of these systems, what that means is we're going to test on exactly these versions. And anything that we add to that means increased workload that we have to go test. And so we create these haves and have nots. In a world that moves as fast as the one that we're living in where bring your own device, bring your own connectivity, this is the norm. Now, I think the industry, we just need more help, we need more players that are experts in this kind of connectivity in this kind of interoperability to make to satisfy the customer's demands. That's really the area that we specialize in is this idea of Bring Your Own Device connectivity. So that's one and then the other is this idea of sharing a lot of these systems, they're built for that initial use case that we discussed, where it's really oriented around the concept of the nuclear family. And you we know you have exactly these many family members and exactly these roles, and that's the way it's gonna work. Or if you want something else that starts to not work very well. You know, if you want the school nurse to have access during school hours, that doesn't really work very well. The idea of sharing, does it really require installing patient? Or is there a web app that works on any device? Those kinds of things, I think Nightscout still has a really compelling advantage. In addition to all the features, she talked about all the watches, there's more than 20 watch faces just for Garmin for Nightscout.


Stacey Simms  44:44

Right and that's just the one brand Garmin there's the all the other ones the Apple Watches smart, the Google wears, etc. fitbits when you see their watch faces, you still need your phone, right? Has anybody gone direct from Dexcom transmitter to phone yet is that maybe some You're working on?


Ben West  45:01

Oh, no, I, I can't say much about that.


Stacey Simms  45:03

Can you confirm it's really hard because that's what I hear from my friends in the DIY space that I've been bugging for five years about this.


Ben West  45:10

What I will say is that this idea of interoperability and connectivity, the idea that you're actually operating a network networks and decentralized systems operate on fundamentally different rules than closed systems that are composed of one unit. And device manufacturers specialize in kind of making these one units or boxes of units at a time. And they fill the shelves with those units, this mode where you start operating in a network with multiple devices that are connected, and you have decentralized emergent behaviors, this is a difficult area. So a lots of technologists that I've worked with agree that nothing's impossible, it's all software, we can make it do anything. But it does require willing participants that are collaborating.


Stacey Simms  45:54

One thing that I have found of talking to you over this time is you're very generous towards the commercial systems, you know, there is no, and I think this is very genuine, there's no bashing, you're not trying to put anybody down, it seems to me and you can correct me if I'm wrong here, this is how I feel. So maybe I'm projecting that there is a really important place for these commercial systems with their very, you know, big, you know, simplicity, they have to be able to be used by a vast majority of people with diabetes, they have to be understood by clinicians. But there is this also really, really important DIY focus that we've seen over the last almost 10 years now. And I do think that I wish there was more cooperation, but they are almost complimentary. And when they're both needed, am I off the mark there? Or am I kind of reading between the lines that you may feel a similar way?


Ben West  46:42

I agree completely. Stacy, what we have is a market full of people with this inhumane disease, right. And this inhumane disease demands all kinds of things on our time and our resources. And because it's inhumane, there's a lot of needs. Now, these companies solve problems in consistent and reliable ways for people. And that's what we need, we need to all as a market, we need a functional market that's working efficiently. That's providing high fidelity health care that provides a reasonable return on investment in terms of the fidelity of care, the more resources that we spend health care and wellness, we should be seeking a return that yields the kind of fidelity commensurate with the spend, right. So in diabetes for a long time it was you could go try and try and try. And you could try as harder and harder and harder as you'd like, a day to day may not be the same, you may not get the same results. And so trying harder is perceived as not worthwhile. Because there's no feedback loop that provides the yield that's required. I think that what we have is a world that's changing with technology really, really fast. And we have an ethical imperative to use that technology in humane and equitable ways. I open sourced all of this software when we got started, because for me, that was part of this, the scientific methodology of it all is someone else should be able to take this software and debug it audited, etc. That was a really important working principle. For me. That's exactly what we need is we need a working process and all of these domains, we need innovation happening. And we need a pipeline that can deliver the benefits of those innovations in an efficient way to the most number of people possible, as quickly as possible. And why? because as we know, this condition, this intensive insulin therapy is just an inhumane condition, it demands too much. And so I'm imagining a world where we can work together, we can have a bolus free up lane free therapy, we can have Bring Your Own Device connectivity, and have full remote control, we can have the supercomputers and the the networks and the people that are connected to our devices and our data work in a collaborative way to prevent repeated hype hyperglycemia repeated insulin reactions, and we can use that data equitably and humanely to deliver high fidelity healthcare. And


Stacey Simms  49:08

that's the vision. You've talked about diabetes 2.0. Is that what you're referring to?


Ben West  49:14

Well, that's an idea. I've been workshopping. I'm hesitant to use the numbers for all kinds of reasons. I have talked to people, not just children and parents, I have now talked to people that have had type 1 diabetes for 40, for 50 years. And they are telling me that this network effect that we have created is one of the most powerful things that's that's happened in their lives. I don't know how to respond other than to try to do more. We've got feedback now from parents and children from people in their middle age and from people that are now experienced 4050 years with diabetes, telling us that this has had such an impact that everyone This should be the standard of care for everyone. And I think When we look at what we're doing today, we're still in the early days, we still haven't really optimized for the next gen system where people are really living their lives really free of the blame and stigma. You don't have the blame for getting a bolus wrong, or for carb counting wrong. Because either because you can share it with someone, you can share this complex dosing decision as it transpires right, you can share it with your buddy, you can share it with an expert you choose, you can share it with someone you trust on demand, or someone could do it for you. That's what we're seeing it for a lot of these parents in school, now it's run day, or it's Testing Day, and the parent can manage all of that stress remotely. That's where we're going even with automated systems. That's what we're seeing. Because the demands as you travel through life, the demands change, and sometimes it's fine to coast and let the machine handle it. Sometimes it's necessary to find, invoke the buddy system and find a friend. Yeah, you know, you've


Stacey Simms  50:57

mentioned a couple times now bolus free blame free. Can I ask you just to kind of dig in on that a little bit more, because I love that concept of if you aren't deciding to give yourself insulin for a meal or for a high, if you can't mess it up? How can you feel bad about it? And I think when you're an adult with type one, or if you're a parent making decisions for your children about this, this guilt, this mental health part of it is so overlooked.


Ben West  51:22

You're so right, Stacy, I call this the onus to bolus Yeah, the onus to bolus so what we've done is we've made out of necessity, we have a system of intensive insulin therapy that requires multiple daily injections. That's been the standard since the introduction of insulin. And then more recently, continuous subcutaneous insulin injection, right? See a society that's classic pump therapy for a brief while we saw the introduction of what's called sensor augmented therapy, sensor augmented pumps, which is where you pair the glucose readings with the insulin pump. And then more recently, we have the introduction of these automated insulin dosing systems, hybrid, full, etc. What all of these systems do is they help address the symptom of diabetes, which is high, uncontrolled glucose. And insulin is the mechanism that we have to bring that glucose back down and under control. It's amazing that this works at all, I sometimes just marvel at how incredible it is that we can manually take this missing hormone insulin, and just dump it in the body almost anywhere, it seems. And it works in the sense that it does provide this temporary relief of controlling that glucose, as we know that balance is extraordinarily difficult, because it is our responsibility to get that right. What happens is, if you get it wrong, it's kind of your fault, especially if you've been given a calculator where your job is you just have to put in the right number. And you know, the calculator will spit out the right number for you. And now it's your job to carb count, or count the number of fat and then deduct the fat and link out the number of fiber and the deductor fiber. And then by the way, for the delay, you know, due to other effects due to the fat, or any alcohol on board, anything like that, or because of sickness or you know what, maybe not feeling well. And actually, you lose your carbs, right? after you eat and you lose the carbs, it just becomes so tricky. One to even know when it is you're going to eat to know how much it is you're going to eat. Three know how that's going to digest. And we could go on and on and on all day about the trouble with this thing. But the problem is, when the language comes up for how we talk about this, we talk about Did you get it correct? You know, we use the words like correction factor, we use the words like correction bolus. I've heard parents actually talk to their children and say go correct yourself. And I've never had that experience, because I was diagnosed in my 20s. But the experience I have had, and this was in my 30s, I was doing exercise in a class and I had an insulin reaction. And you know, I had to take a break out of the class, I really wasn't feeling well, right. And it's really, it's never pleasant when that happens for so many reasons. But one of the biggest is always you're just you're othered you're not part of the group doing the activity anymore. You're often in this weird thing. And often it's involving bloodletting in front of everyone, right? I mean, this is not good. And then so I'm having this conversation afterwards about, you know, here's my CGM. Here's my pump. And, you know, this instructor goes well, Oh, isn't that great? That is doing all that for you. Great. So the reasonable person when they see all of these devices, they're expecting it to do all of this already. Right? That's that's the reasonable person's expectation. I had to have a 15 to 20 minute conversation explaining, well, no, it doesn't really work like that. I have to take the CGM number, I have to guess if it's right. I have to get some blood to make sure. And then I have to do this thing. And then you know, I have to take the right I'm out. And the response right away, this still affects me was. So does that mean you just did up? When I explained how the mechanics works, the onus is on me the onus to pull this is on me to get it right. And the entire system around this is designed to make sure that it's not anyone else's fault. As it should be, it should not be anyone else's fault. If it's going to be someone's fault, it should be mine. But the entire system is designed to dock the way that you interact with the doctors, the therapy that they start you on is designed so that they're not going to kill you. They don't want to kill you. Yeah. And it's designed to just keep you alive, and they'll try to figure things out. You know, after that, let's keep you alive. First, the way that design happens in manufacturing with these vendors, I call it defensible design. It is designed so that they will not be held responsible for something going wrong. That's the way that it's designed.


Stacey Simms  55:53

It's interesting, because so many thoughts flashed through my head when you were talking about those things in terms of blame a lot of parents and I speak on this to try to get them to stop, but a lot of parents call the a one c visit to the endocrinologist their report card, you know, it's mom's report card. And that's a really tough way to look at this. But I understand why. And another thought I had was when we started with control IQ, about a year and a half ago now, I was just gobsmacked on how many decisions it makes it can make something like 300 decisions a day and how we were and I say we because you know, I mean, Ben, he was diagnosed at two. So I'm still going through the process of saying his diabetes, not our diabetes, so forgive me. But you know, he's a once he went down, his time and range went up. But it really showed me how there was no way for me as a parent of a toddler and a little kid and a middle schooler. And there was no way for him as an individual to keep up with that machine. And that machine couldn't even be perfect. And I got to tell you, well, it was frustrating to say okay, the machine can be perfect. It was so freeing to be able to say I had no chance, if that makes sense.


Ben West  56:58

That's why I chose the word inhumane stage, is when you see what it takes for success, you realize you didn't stand a chance. And we have to find ways other than blaming each other. We have to use technology and in this in this way to make this possible.


Stacey Simms  57:15

Thinking that way, then, let's talk a little pie in the sky here. Obviously, Dream stuff with technology isn't gonna happen next year, or maybe even the next five years. I don't know what the timeline is. But what do you want to see? I mean, can you give me some, and I'm going to put you on the spot, but maybe some concrete examples of how that bonus to bolus could be lifted?


Ben West  57:35

Well, there's, there's a number of ways to address this. You mentioned other technologies, other therapies, there's certainly so many capabilities, we're adding to our tool belt, whether that's new therapeutics, I've heard of people taking other hormones, other injections, supplementary injections, that that seems to really work. Well. For some folks, we've got faster insolence coming relatively soon, some folks are working on, you know, micro dosing, glucagon. And then there's there's other types of therapeutics as well. So there's all kinds of things it's really difficult to know, a lot of that is out of my wheelhouse. I'm a software person, I know how to manage cloud, we know how to do transformational services, digital transformation, right, we know how to manage really complex stuff, using technology to provide a collaborative decision making process, it's in the power of the web, or society as a whole. That's why I wanted to become a technologist and work on the web as a whole was this idea of the collaborative power of sharing. That's my big bet. That's the thing that I get really excited about, I see automated dosing systems are coming faster insulins are coming. And those are all great, they're going to be so profound and helping people. But at the end of the day, with these therapies, you're still facing exactly that you're facing a lifelong journey with other people with this experience. And my big bet is that this need for sharing is so fundamental that that's why sharing is being adopted in every part of software that we look at every piece of technology that we get first. It's like a solo experience. And then eventually, it becomes like a collaborative social experience. that's been true of a lot of different kinds of software. And I think that we're going to see the same thing in diabetes care that we'll see clinics that will embrace the digital technology, so that instead of having appointments once every 90 days, or once every six months or once a year, whatever it is that you're going to get connected to the people you trust in the experts you need just in time and on demand. So if you're someone if you're using one of these fancy pumps that's connected to supercomputer and connected to a network, there should be an agreement for how this is going to work. If you're going low. lifetimes per night. What is the pathway for someone to intervene for us to deliver the help that you need? Because I'm pretty sure no one wants to go for an insulin reaction for a sixth and seventh night. Yeah, I'm pretty sure there's some consent that can be arranged. There's got to be some design there. Right, where we're going to eliminate this. When I think about the remote overrides, and the overrides features that are happening right now we're, you know, we're playing around with things like sleep mode, things like exercise mode, those are dosing decisions. When you decide to invoke sleep mode, or invoke exercise mode, the algorithm is changing its dosing slightly, it turns out that all dosing decisions are just really, really hard. You can't turn on dosing. On exercise mode, when you start exercising, you have to turn it on hours ahead of time, right? Like those kinds of things. Maybe we could share access to those things. One of the examples that I've been learning about recently is, is this remote overrides where the teenager is doing testing, and it's stressful on test day, and your attention is supposed to be on taking the test. It's not supposed to be on managing diabetes, and in fact, playing around with diabetes devices, which is how it's gonna look like to the proctor to the school that you're just playing around with devices, that becomes an issue. Can you trust the proctor to handle these devices, etc? Well, guess what, with remote overrides this idea of remote controls and sharing your dosing decisions, that becomes a non issue. I've heard of parents and teenagers coming up with a plan for the day, okay, it's testing, here's what's going to happen. Here's the schedule we're going to go through, and the parent is able to help coax the automated dosing machine through the day. And all of a sudden, what I don't know how else to handle it. Because that's the nature of life is that Sure, you can schedule some things, you can automate some things. But there's all these edge cases, as you travel through life that demand more they demand attention from humans. And if as long as that's true, it's also true that humans are going to want to share that experience.


Stacey Simms  1:02:04

I have to ask you, Ben, are you saying that there is a system out there that someone could remote, not just communicate but control the insulin pump from from home?


Ben West  1:02:15

Yeah, it's real. You could set exercise mode or eating student mode, things like that.


Stacey Simms  1:02:21

Well, you can set exercise mode before you get somewhere but you can't like I can't at home, like my son right now. Is out running around the neighborhood. I can't say exercise mode go. I know, we are you mean in the future?


Ben West  1:02:34

Not with Tandem but with Nightscout. And that's


Unknown Speaker  1:02:36

what I'm saying. Okay.


Ben West  1:02:38

Yeah, part of what I mean by it's several generations ahead. It's years ahead. In terms of, you know, night with nice guy, you can actually do these things, you can share dosing decisions as they transpire as life demands.


Stacey Simms  1:02:50

I'm still not clear though. I mean, I can not to share the decision, like the son says, I'm doing it, but I'm in my home five miles away, and I press a button on my phone and my son's pump changes when it's doing.


Ben West  1:03:01

I think that's one of the key insights with diabetes as well, Stacy, is that those decisions don't always happen at the time of when something is happening. Sometimes your dosing decision takes place five miles away, or hours before,


Stacey Simms  1:03:14

but I'm still not clear, but I'm so sorry. With Nightscout. Can I control my son's pump from five miles away? At the moment?


Ben West  1:03:21

Yes, you can. You can tell it to go into exercise mode telogen, sleeping mode, things like that. Yes. Okay.


Stacey Simms  1:03:28

Yes. Perfect. That's exactly what I was asking. Okay, sorry, for my ignorance. That's great. Sorry, there's, there's there's a whole other philosophical argument that we could have in the future about how much control parents should have At what age and but that's a different story altogether.


Unknown Speaker  1:03:41

Yeah. So


Unknown Speaker  1:03:42

the choice to make there I want that


Ben West  1:03:44

choice. Right. This is where the really interesting conversations really begins right here is what is your personal data governance policy? What are the boundaries that families want to implement? And like, that's why I mentioned this particular story between this teenager, and I believe it was their mother, they actually have this conversation about like, okay, here's the day schedule, what are our roles for the day? Right? Isn't that such a beautiful thing? To say? Oh, you know, I think it's gonna be a stressful day for me. Could you just handle that?


Stacey Simms  1:04:13

Oh, it's fabulous. Go ahead.


Ben West  1:04:16

Could you just go ahead and handle that, for me? That's something that even as a professional adult, I want access to that kind of therapy. I would love to be able to say, you know what, I got a stressful day to day, could you just handle it for me? The same way that I can buy an Uber, I can get an Uber for the day, I think I should be able to get something like that for the day. I think that's coming. I'm interested in building it. So I do think that's what's coming, though. I think that's those are the kinds of things worth getting excited about. Yeah,


Stacey Simms  1:04:44

I used to give my son what I call the diabetes free day. And it was any time that he was stressed or had been doing things by himself, like he used to go to summer camp for a long time and, you know, not diabetes camp, but a camp where he was responsible for everything. And he was all burned out when he came home. So I would Two or three days of diabetes free, which we meant, and he was still doing finger sticks at the time, he wouldn't do any finger sticks, he wouldn't count any carbs, he wouldn't even touch his pump. And by the end of two days, he was like mom, mom, leave me alone. But he always liked it, you know, for a couple of days. And so if you can give us another diabetes free day, maybe when he's in college, Ben, I would love them.


Ben West  1:05:19

I think that's representative of the masses. I take care of myself most of the time, but every every once in a while, that's what vacations are for. And that restorative power of those vacations. I think that's something that people on intensive insulin therapy deserve.


Stacey Simms  1:05:34

We started this interview by kind of looking back at the beginnings of we are not waiting and and talking about all of the people that are part of that story, and your involvement and everything. You know, you mentioned it's almost 10 years already seven years, maybe since nightscout. When you're looking back, any thoughts on where we are? Now I know we've already said there's a long way to go. But from where I sit, I'm a lot happier with what I have just commercially for my son's diabetes than I was in say, you know, 2011, and I'm curious what your thought is for your own care.


Ben West  1:06:08

I'd like to see several more improvements. We have a problem with supply rationing of all kinds, whether that's CGM supplies, in my case, I ration my CGM supplies very, very carefully. I just cannot imagine when I add up the math, it seems pretty obvious that you don't have enough sensors to provide enough glucose monitoring, in order to make your automated dosing machine work all year round without any breaks. That's something that I'd like to see fixed is no this concept of it's just really difficult for people with diabetes to get enough supplies, whether that's glucose monitoring, or even access to insulin. On a basic level, you know, I have to start there, in some ways.


Stacey Simms  1:06:56

Yeah. And I really, you know, it's funny, it's not at all what I was thinking, and it is the number one thing we need to fix. Last night, Ben, I got in my car at nine o'clock, and brought pump in sets and cartridges to a mom whose insurance company was given her grief, and they had just, you know, it didn't the thing hadn't come, and she needed supplies. And I'm in my car, and a widow driving through town with a little lunchbox bag of diabetes supplies, I have a great group here, we'll help each other, but that shouldn't have to happen.


Ben West  1:07:25

And then for the for community members to be forced into the gray market like this. There's so many patients, and then to be demonized by industry, when there's real needs in the real world here that we're just trying to meet. So we need more collaboration across the board, that's for sure.


Stacey Simms  1:07:44

Alright, so as we wrap this up, and before I let you go, knowing that that's that's pretty serious. Here's a pretty silly one. We are not waiting was the hashtag that took off any predictions for what the next the next hashtag is going to be? love to see honest a bolus hashtag want us to have all this? Yeah, we'd like to get rid of that one. We'd like to use it and then get rid of it.


Ben West  1:08:03

That's right. Language matters and order symbols.


Stacey Simms  1:08:06

And thank you so much for sharing so much time with me. I followed you for years. I'm such an admirer. Even though I feel sometimes like I don't understand half of what's going on. But we you and so many others have done has just pushed this technology and the help for people with diabetes, so far ahead of where it would have been left to, you know, commercial devices. So I'm excited to have a chance to just say thank you for doing that. And thanks for talking with me.


Ben West  1:08:29

Thank you so much, Stacey. I really appreciate your work, too. I've heard so many of the interviews from people that I know and love. So this is truly so special to be a part of this. And I'm so grateful that you've taken up this project. So thank you as well. Oh, my gosh, thank you.


Unknown Speaker  1:08:50

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  1:08:55

I could talk to Ben west for hours. And in the interest of full disclosure, I will tell you that we did speak for probably a total of an hour and a half. The first time Ben and I talked, I got a little bit in the weeds after about 30 minutes. And most of the interview became me not understanding a lot of what was happening with nightscout. And I'm telling you this because you know me, I'm always in the interest of full disclosure, and I love behind the scenes stuff with podcasts or interviews shows, we agreed together that we would do another interview, I went through the transcript, I gave Ben a copy of the transcript and we kind of figured out what we had left out. And so I went back and recovered the nightscout. If you really want to pinpoint it, it happens right after the Dexcom commercial. That's where the second interview picks up about 3035 minutes into the first interview. We didn't leave anything on the cutting room floor that was important or would have changed the flow of the interview. But I think I was much more focused than was of course fine twice, but I was much more focused the second time around and you could even hear me and some of that Not understanding. It's so embarrassing sometimes, but not understanding what he is seeing. But I leave all of that in because I think that while many of you, as you listen are super technical, there's a lot of people who really don't understand everything that is being offered non commercially and DIY still. So that is why I left a lot of that in. Thank you so much for listening. I will link up a lot of what we mentioned over at Diabetes Of course, there is a transcript as there is beginning in January of 2020. Every episode has one I'm still working to get the backlog done, but we will get there. Huge thanks to Ben west for really spending so much time with me and sharing so much information. Just so happy to have finally gotten him on the show. All right. Thank you as always to my editor John Bukenas for audio editing solutions. I'm Stacey Simms. I'll see you back here in just a couple of days for one of our classic episodes. Until then, be kind to yourself.


Benny  1:10:57

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

Apr 22, 2021

Eight years ago, you could use a CGM but you couldn't share the data. Dexcom transmitters didn't connect to phones and parents and caregivers couldn't Follow anyone. That started to change - and change quickly - in 2013. That's when John Costik posted a photo on Twitter. That photo showed John's laptop, at home, monitoring his son Evan's blood sugar while Evan was miles away, at daycare.

John soon linked up with others who were also working on improving existing diabetes tech. That was the start of Nightscout and a host of other "We are not waiting" improvements, many of which are now integrated into commercial offerings.

This interview with John is from October of 2015. He has since left his job as a supermarket software engineer and is currently the director of digital product development at Beta Bionics. That's the company founded by Ed Damiano that's developing the iLet insulin pump.

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Episode Transcription Below


Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know stuff.


Announcer  0:13

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:19

Welcome to a classic episode of Diabetes Connections. As always, though, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are something new this year, we are bringing back some interviews that are from the very first year of year and a half of the show. We started in 2015, coming up on six years. So there's a lot of episodes that newer listeners haven't heard. And it's kind of fun to go back and give some perspective. I like revisiting. I'm emailing everybody that was featured. If they're getting a classic episode, I'm sending them a text message or a DM or email or you know, I'm just getting in touch with them to say anything you want to share, you know, any new stuff. And it's been really fun to reconnect with some of those previous guests.

I’ll be honest with you, I have really hesitated about bringing by older tech type episodes into this run of classics. We did a lot of interviews, like we do now with the pump companies and technology and things like that. And I think it could just be kind of confusing if you're a newer listener, or if you know, you put a classic episode on and you're thinking it's new. But I mean, let's say I run an episode from 2015, when Dexcom, for example, is talking about an upcoming piece of technology that now in 2021, is outdated or never happened. So I'm purposefully avoiding most of those interviews. If you're interested, though, there's a great search box. I'm really proud of the website. It's very robust, you can go and search the 372 episodes that we have put index calm, see how its evolved over time, put in animists and find out what happened, you know, that kind of stuff. Some of those types of interviews, though, especially from the Do It Yourself community are, in my opinion, very valuable and very much worth revisiting. So that is the topic for this week.

All right, come with me now let us go back to the olden days of diabetes back before 2013. Now I know most of you that's not the olden days for real. But you think about what has changed since then. Before 2013. It was a time where continuous glucose monitors were used. They were around we were at the time using I want to say the g4 Platinum pediatric. But you know, you could use it, you had a nifty little receiver, but you could not share the data. And it I don't believe in 2013 it was on anybody's phone, you definitely couldn't share. Then we saw the tweet. I've been on Twitter since 2008, thanks to my radio days, but I can't say that I was following john Costik at this time, but he was retweeted by somebody else I knew. And I saw this amazing thing. It was a dad watching his young son's blood sugar. On the dad's laptop. The kid was in daycare, the dad was at home, they were across town from each other in 2013. I started following that dad, john Costik. And of course, I was far from the only one john linked up with others who were also working on improving existing diabetes technology. And all of that was really the start of nightscout and a host of other we are not waiting type improvements, many of which are now integrated into commercial offerings. We are going to revisit that time with john Costik in just a moment and catch up on what he's doing now.

But first Diabetes Connections is brought to you by inside the breakthrough on the surface. This podcast is a collection of fun, entertaining and even surprising stories from the history of science. But host Dan riskin digs deeper and he really does entertained while drawing connections between these stories and the challenges faced by modern day medical researchers. The latest episode it was just released a couple of days ago. It is wild Dan explains why it took a dozen people 200 years to discover and then undiscovered a planet. I love this podcast. I'm so glad to partner with them. You can search for inside the breakthrough anywhere you listen to audio wherever you found this podcast and if you are listening through the website or social media, click on Diabetes, Connections COMM And you'll see the insight the breakthrough logo. By the way, good time to remind you this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

A couple of things to know before we jump into the interview, I did reach out to john Costik of course, as I mentioned, and he said let's let folks know I'm hard at work on the islet and its digital products. He is currently the Director of digital product development at beta bionics. He would love that and he says hope you're doing well Stacey and if you are not familiar in the islet is the product from Ed Damiano. We've had him on the show a couple of times beta bionics is the company that is now developing it The islet is finishing some clinical trials this year and should be submitted to the FDA. Pretty soon I am speaking to the folks at beta bionics about coming on the show and giving us an update. So we will work on that as well.

But also remember, this is from the fall of 2015, there are going to be dated references. I just want to kind of keep that in your brain. Because while it's fascinating to take a look back, you have to keep in mind as you listen, this is nearly six years ago, but I gotta tell you, I'm just as excited listening back to this interview as I was when I first saw that tweet, John Costik. I am thrilled to have you as my guest this week. Welcome to Diabetes Connections.


John Costik  5:41

Oh, thank you. so thrilled to be here.


Stacey Simms  5:43

Thank you very much. Let's talk about how this all started. Your son was diagnosed in 2012. He was four. But unlike a lot of people who have children diagnosed at any age, you had more technical knowledge than a lot of us. Can you take us through first, you know your diagnosis story, what happened to lead you to find out that your son have diabetes? And then you know, what made you think to look at the equipment and think well, this isn't good enough.


John Costik  6:11

Right? So it was late summer, end of August 2012. And Evan was showing sort of those classic signs that now we know are classic signs, right that he was thirsty all the time peeing all the time and just, you know, little get more lethargic as the day went on. And the 24th was a Friday and my wife Laura went over to pick them up from daycare surprise him with an early lunch. And when she got there that the instructor said, He's so thirsty, he's crying. So she called me and I was out for a run on the canal path. And I remember, she told me what was going on. I said, That's not good. And, you know, he's been really thirsty and really sweaty. past couple days, let's I said just, you know, both of our guts, were telling us, let's get into the doctor. So she called our primary care. And on like most appointments, where they're like, Well, yeah, we'll see you in a couple days, they were really quick to say, Okay, come in, at one o'clock, then, you know, so like a one hour delay from the time they called. So little did we know they I mean, they knew pretty much right away what it was. So as soon as they got there, of course, he had to go to the bathroom. So they did urine check. And he was clearly spilling sugars than they needed to finger check. And he maxed it out. And they basically said, we're gonna call the hospital, you get in the car and just go to the ER, we'll tell them. You're on your way.


Stacey Simms  7:42

Did you know anything about diabetes at that point?


John Costik  7:45

No, no. And this was Laura was at the doctor. So she called me I was at work at this point. And it was just like, getting hit in the head basically. And yeah, my, my knowledge of diabetes was very limited, much some family members that were type two, and I knew there was no type one and type two, and one was curable, one wasn't. And that was mostly because growing up my mother, my mother, she still is a nurse, but she's retired. But she was the school nurse. And there were a couple kids with type one. And I remember just hearing stories of her having to, you know, go to people's homes to pick up their insulin for them if they forgot it. So understanding that type one was distinctly different, I at least knew that much. But the next three days at the hospital, obviously, they put us through the type one boot camp, and send you on your way, basically with vials of insulin, and, in our case, humalog pen, and we had to sort of figure it out from there. Yeah, they gave us the general guidelines for how much insulin he may or may not need, how much lantis to give him. And we were on our way.


Stacey Simms  8:53

Now, it seems like you started on a continuous glucose monitor pretty quickly, how soon after you got home? Did you start thinking about that?


John Costik  9:00

So it was mentioned to us while we were at the hospital by the endocrinologist that diagnosed HIV. And at the time was the Dexcom. Seven, and the I think it was still the Medtronic soft sensor at that point. So those were the only two that were shown to us. And he said, okay, it's a lot of information up front. So we actually went with shots and did a lot of finger checking, initially. But one of the one of the things we recognized real quickly, was the ability to to log this data and communicate this data was sort of hampered you know, if the nurse was writing things down in a log book that didn't inform Laura and I how Evan was doing during the day. So the first thing I did was set up a website for logging, you know, nutritional data, finger checks and how much insulin we were giving him. So that was within probably a week after diagnosis had some semblance of that. And that was to prepare him for going back to daycare. So we could all stay in the loop. So that system would send Lauren an email, a text message whenever a treatment was entered.


Stacey Simms  10:11

Alright, so then a few months later, though, you decided to go with the Dexcom. g4.


John Costik  10:15

Yeah, we started looking around, so around November when I got approved. So I immediately signed up for all the diabetes technology, news letters and everything I could and started, you know, as, as my mind kind of settled down from the diagnosis. You know, I started looking to see what can we use to keep him safer, healthier, both in the short term and long term. And the g4 was approved, I believe it was November in that ballpark of 2012. So I began the process almost immediately to get that it took a while to get it through insurance. Because they actually like to see hypoglycemia before they'll give you tools to avoid it.


Stacey Simms  10:52

I know. And if you do, too well, they want they might take it away. That's the craziest part.


John Costik  10:56

No, no, your son's still healthy doesn't need the thing that's keeping him healthy. Yeah. So. So unfortunately, or, you know, he did have a low in January, that basically put us over the edge. Then they approved it, and we had it in, you know, the second or third week of February 2013. And that's when we began using that. And does that mean immediately it was sort of a revelation to have this second order data, this trend data along with the blood sugar, just so to know directionally where he's going. And you know, what's happening in those periods that we were blind to before. So immediately after meals, we'd see these big spikes that come right down. But, you know, got our mind spinning on, what can we do to improve that? And at the same time, when we sent him to school, is there any way for us to have continued access to the CGM data?


Stacey Simms  11:52

Now you both you and your wife both have backgrounds in engineering? Correct. And so this was something that you looked at, and what did you think of the system because somebody like me, you know, I was a communications major in college, I've worked in broadcasting my whole life. I looked at the CGM. And I thought, Wow, this is so great. How could it get any better? You looked at and thought this is the dumbest device in terms of talking to anything else?


John Costik  12:14

Right, but but I understood the position that everything sort of has, has to go through that growing cycle. So I understood that. So I also my wife worked at an FDA regulated company. So we had some idea that putting a medical device online and presenting that data to people is more daunting for the commercial entity than it would be for us as individuals to just extend it. So we I mean, we were never, I never really railed against Dexcom. In at the time, I think they had sort of shown off some semblance of share, or there'd been some patents that came along that indicated that they were clearly moving towards remote monitoring at some point. But it wasn't something I was going to wait for. Right. So I have the CGM. Now this great device, I have a laptop that can talk to it. And I know, I can take that data off and send it to a cloud service. Or, in our case, we just started with a simple Google spreadsheet that we sent the data to. And then I wrote an iPhone app that pulled that data down and your web app, so the school could just see, you know, his current blood sugar and trend. So we integrated that with with our care portal website. And that was powered by a laptop top load. So initially, I just used a repurposed Dexcom zone, what I call a DLL, linking library dynamic linking library. So that's basically just a program that allows you to interface programmatically with the receiver. So I just repurposed that wrote a fairly simple Windows application to just pull that data every five minutes, and then upload it to that. Like I said, that Google spreadsheet.


Stacey Simms  14:02

Okay, so I'm just curious, was it hard for you to do that? Did it take you a long time? Or did you sit down and tap the tap tap? You know, you're done. You got it?


John Costik  14:10

It wasn't, wasn't challenge. So my background in software, I it was relatively recent background, but it was all focused around windows code, and specifically writing these sorts of libraries for other hardware devices. So I understood if I took their library and put it into what what I would call, you know, a software project, that I wouldn't be able to see exactly the interfaces that could pull that data into my own application. So it really only took probably an hour or two, to write to write the basic windows uploader.


Stacey Simms  14:46

And then you put this picture on Twitter. I don't know how long after that said, Look at what we're doing. Isn't that interesting? And did you expect the reaction that you got which was basically jaws dropping around the country, saying how Do I do that?


John Costik  15:01

Yeah, that's, I took some pictures of the windows one initially. And that didn't get a ton of attention. And when when I started going after a truly ambulatory like a mobile solution, that is what really drew people in. So I knew Evan was going to kindergarten, I wanted him to be able to remotely monitor, monitor, monitor, no matter where he was, was, he was on the bus, in class moving around, so I knew, you know, even a really small laptop wouldn't cut, it just wouldn't be convenient for him. But if I could get a small cell phone, smartphone and do that, great. So I started in Android was really the only choice they make much easier to communicate with USB devices and other accessories. So I started working on that, beginning of May, in about a week or two into may, I had sort of unraveled how Dexcom was communicating with the device and, and what that communication looked like and how to interpret that, and then send it along to to a web service to a cloud service. So those tweets got people's attention. And I think I chimed in on on a bulletin board somewhere. And that's when Wayne Desborough reached out and said, Hey, I'd really like to do the same thing for my son, he's his room is too far for the receiver to be in our room and reach him. So we'd like to do to build a remote monitoring system.


Stacey Simms  16:36

Okay, so let me stop you there and tell me if this is all correct. Lane despereaux. Now with Bigfoot biomedical, yep. He has an engineering background as well, I think you work for Medtronic for a while, but he had designed his own home display system. He He's the guy who came up with the nightscout name, right. But he didn't connect it to the internet.


John Costik  16:56

Now, he, he did so ln really took my uploader and created that open source nightscout back end. So the the website you see today is is an evolution of his original design, and uses the same architecture. So a Mongo database, and a Node JS application sitting on a web server somewhere, and allowing people to view you know, their data or their loved ones data. Okay, so that that core was was Lane's work. And later, he brought on Ross nailer, software engineer, and they sort of refined that and got it to that point where, where it could could go live. So for my part, they, they took my uploader code, you know, I gave that to them. And I took their chart code, and put that into, into our home system. And that's sort of where it took off. So in the middle of the summer, I started using the Pebble watch, because I my whole goal this whole time was just how simple can I make this? How glanceable and easy can I make this for everybody involved, because I don't want to stare at the chart all day at work, I just want to know when something's up, I want to go on my day, but know that this system will tap me on the shoulder when it needs to. So Pebble watch was was a good way to do that. Because you can make it vibrate and do all sorts of things to get your attention.


Stacey Simms  18:25

Okay, so now you've got it on your Pebble watch laying despereaux and other people that you've mentioned, are coming up with their own additions. When did what we now recognize as nightscout? When did that all come into play? Was it a few weeks or months after you all kind of shared your codes?


John Costik  18:45

So I think lane started using that name fairly early on. And we all met Finally, actually, Lane was in Rochester, New York for a sailing competition that I believe he won at the end of August 2013. So he actually was at our house for Evans first diversity. And that was a great time when he and I got talking about, you know, everything, right? Very, just an amazing individual really inspired me and opened my eyes to like, Look, there's a lot of people trying to do this. And right now, between the two of us, we have all the components to make it happen. So it was very inspiring, because up until then, I mean, I was a software engineer at a supermarket. Right? Yeah, that wasn't something I'd considered. You know, I lived in a small town. I never really looked beyond that. I liked my simple life. And part of my response to Evans diabetes was I want my simple life back. So these were the tools I wanted to build that I needed to take it back. Right. Yeah. But now seeing this really large unmet need across the entire, you know, population of people with diabetes. He's in there and their loved ones woke me up to that. And then in November, I went to the data exchange, which is hosted by tide pool and diabetes mine. And then diabetes, mine has their Innovation Summit the same, you know, in that same couple days cycle. And that really sort of sealed the deal for me to see what type who was doing, starts trying to integrate all this data. And I'm like, wow, okay, this is really happening. So I can either join in, or, or not, right, and it just seemed like an obvious thing to, you know, pitch in and see what we could do. So, at that point, it was really just a matter of refining that code, to a certain point where other people could make it work. And personally, I didn't think it would ever grow beyond, you know, a sort of core really technically savvy group of people that could set up their web server set up the cloud service, right, and compile a Java application for their Android phone.


Stacey Simms  21:04

Well, that's what's what's remarkable about this whole movement is that, you know, as you say, this core of people, is making it all available to people who have no real technical knowledge, who are completely intimidated by the whole thing, but want access to this information to the point where they're willing to get in a Facebook group and say, Hey, can you help me? And then people do it, people help. And it's been really remarkable to see how it's grown and how people like you are not just sharing your code, but sharing time to set up all of these systems. When you look back now. I mean, can you imagine that? There's something like 14,000 people in the CGM in the cloud Facebook group. I know not everybody's using the system. But they're they're looking at this stuff. Did you think I would get this big?


John Costik  21:50

No, no, not Not a clue. I mean, Laura and I, we had some inkling that what we built was awesome. Because it really enabled Evan to have as close to like that standard school kindergarten experience, as we could have ever imagined after his diagnosis, right? Oh, he had to carry, you know, a little bag around, but he would have had to anyway, right, he'd always need his glucagon and glucose and finger checker. So it wasn't too much more of a burden to put a cell phone and and the the CGM monitor in their hand. Good. Yeah. So just enabled him and we worked with the school nurse, and we refined, you know, our web application and our care portal, to really be something that that she was comfortable using. And something you know, that that informed us, you know, in real time of what was going on in school. So it's really just a nice experience. And again, like, like the daycare experience we've had an amazing experience with, with the Lavanya School District, the nurse in particular, she's just a wonderful person just wants everyone to be happy and healthy, and every kid in that school, so she's, she's like Laura nine. Now. She just she knows his diabetes really well, because she can just glance at and she gets a really good sense for what's going on in his day and how he's feeling and how that will impact his blood sugar. And there's almost never an occasion where we have to chime in or even text her to say, Hey, can you give him a grammar to, you know, and if we do do that she's already on her way down, are already calling down to make it happen. So it's just it's just been an amazing thing for him and for us, and it's been wonderful.


Stacey Simms  23:34

How's he doing these days? He's in second grade now.


John Costik  23:37

Yeah, second, he's doing a good. So it's, it's nice with the share receiver, we can use the Bluetooth connection so that that Reagan's gotten smaller and simpler for you know, it's wireless now. So we really can get his, you know, physical burden of the devices to a minimum at this point. It's also improved outcomes tremendously is a one C is great, you know, his standard deviation is time and range, all these things improve by having this sort of, always on and easy access to, to all this diabetes data.


Stacey Simms  24:13

And you mentioned the Dexcom share, we should note that Dexcom share Medtronic has is coming out with a system that is similar, where instead of doing it yourself, they're setting it up for you. But that and I don't know if I'm explaining this correctly, but there are still features that you all have set up and that the nightscout folks have set up that are not included in the share, is that correct?


John Costik  24:36

The main missing feature that people really enjoy, is that what folks refer to as raw data. So the ability to see some data during either a restart or a warm up period, or during the dreaded triple question marks. You know, there's there's some visibility data, you're not totally blacked out from that data with nightscout. Whereas, as the standard Dexcom, system will do that.


Stacey Simms  25:11

Let me turn this around for just a moment and play devil's advocate. While many people, obviously 1000s of people use nightscout, and are excited about the Dexcom, share, there are a lot of people who have type 1 diabetes, I'm going to put teenagers in this category, probably a lot of them who feel as though this is a bit overbearing, and who feel as though there needs to come a time when you know, parents, or others, you know, maybe don't have access to their numbers, or that this creates a situation where there's just so much hovering. Now, it's difficult for me to ask you about that, because you're doing this for your family, you didn't do this for everybody else. What's your take on that? And even still pretty little, but what's your take on


John Costik  25:57

that? My take is always in law. And I've always said, you have to you have to find the systems and build your own system to an extent, you know, whether you're selecting devices, or features on those devices, that that suits you, in that time in that context of I have a teenager with diabetes, I have a young child with diabetes. So if you have a teenager that is very trustworthy, and manages their diabetes really well, you know, maybe you're, you're not going to look at that remote monitoring, it's an essential piece. Right. And for folks that may be worried more about their teenagers. I mean, at some point, you you, you do have to stand up and say like, Look, I'm I'm your parent, hovering or not, I want to keep you safe and alive. And I think there probably is a balance that you have to find with the individual child. Right? So if they feel it's really invasive. You How can we make the system less invasive, maybe they don't always have an always on access, but they get alerted to you know, impending hypoglycemia? Right. So there's always ways that since it's an open source system, people could take the system and, and really fine tune it to their particular needs. And for us, with epanet his age, it's less about hovering, and more about actually giving him more freedom. Because us, knowing what his blood sugar is allows him to just be a kid. Right? And it's, we don't he doesn't get bothered nearly as much as he would if we didn't have it. So so there is that sort of aspect that I think gets overlooked, you don't realize that it actually enables more freedom, in most cases?


Stacey Simms  27:45

I think that is a great point. Because it's a parenting question, right? It's not a technical question. The system exists, and it's great. And how you use it is up to you I've shared before I have never used nightscout. It's not something that I first when it first came out, I looked at that and said, we'll break that in about three seconds, if we can even get it set up. It's just not us. And when shear came out, I was one of the people who got the cradle and use it overnight, loved it and never really felt like I needed to get an upgrade because my son is at a point where he's at a terrific school. He's in fifth grade. And I did not feel that I needed to remote monitor because he's at an age. And listen, I can get criticized for this. Or I think it's better for him to make some mistakes, in what I know, after all these years is an incredibly safe and supportive environment. But I got the share receiver. And I use it, as you said, finding it gives him more freedom. There's a tradition in my town, where the fifth graders walk from school on Friday afternoons to our little town and are allowed for like two hours the town tolerates them running around, going to the soda shop, yes, we have a soda shop, going to the green going to the library on their own. And I didn't want him doing that, without at the very least a way to contact me. And we have both found that having the share system. And he only really takes a cell phone to school on Friday so I can see it. He doesn't even need to check in. I know what's going on. I'm not too worried about it. We text about well, what are you going to eat? And how are we going to deal with that. But it's made it so much easier. So as somebody who doesn't remote monitor on a regular basis, that little tool has given him freedom if he was two years old. I mean, my son's diagnosed before he was two, would I feel differently? Probably. But it's it is I think it's more a parenting question than a technical question. So maybe it wasn't fair to ask. You


John Costik  29:36

know, I think it's fine because ultimately I mean, I'm, I'm a parent, there's a lot of all this came out of what I felt were our needs as a family. Definitely one of our, you know, one of our family members safe and happy and to improve the quality of life at all. It does come down to how people you use the tool. It can be very invasive, if you're a parent that is constantly paying that kid to do so. Right So the technology can enable hovering as much as reduce it, I think,


Stacey Simms  30:06

yeah. And ask me again in middle school and ask me again in high school. So you know, these things changes as the kids change, right. And as the setup changes, hey, you also share your information. With some recent guests of mine, I talked to Dana and Scott from the open APS project that do it yourself pancreas system, and they're basically working on the you're operating an artificial pancreas system that Dana has worn for almost two years. Now they close the loop last year, what do you think is going to happen next? What do you look at in technology? And say, yeah, that's going to happen? And I'm going to have that forever? And


John Costik  30:42

that's a good question. So obviously, you know, I want us all to be put out of business, just cure it. Exactly. But if if, if there's a functional cure, whether it's bigfoots product, or Dr. damianos product, or somebody else, you know, whether it's encapsulated islet cells, you know, via site, if they figure it out, and are able to do an implant that reduces the insulin need, significantly, if not eliminated, those those are the sort of things that that make me excited, and I look forward to those and, and Scott, and Dana very clearly showed, like, Look, you need to get this AP stuff rolling, because it can be tremendously beneficial to people with diabetes, right? It reduces their burden makes them much healthier keeps their blood sugar's in range, with a much higher percentage, right? Yeah. So early on, they were I think it was Scott reached out to me saw a couple tweets, he tweeted back and said, hey, how can I get this? So he was one of the folks that I shared the uploader code with early, you know, before it was publicly available for it was open source. You know, I knew you looked into his background, and we talked and it was very clearly the software wise, he was savvy. And so I was happy to share that with with him. And Jason calibres was another person that I gave the uploader to earlier. And Jason Adams, who founded the Facebook group, was another one of these folks that early on, had really reached out to me and got me rolling.


Stacey Simms  32:15

Oh, let me interrupt you here. Why not? Why not? Make it more proprietary? I mean, why? Why make it so easily available? When, obviously, people were clamoring for this and probably would have paid you for it? I feel like I should be twirling my mustache. When I asked you that question.


John Costik  32:32

That was a question. We got a lot, actually. So when people saw our system, even before we made it open source, they said, Oh, that's a million dollar idea. I said, Yeah, but it's not really my idea. Right? Everybody's had this idea. Scott hanselman had the idea 15 years ago, you know, so people we've very smart people know that better, we can access our data, the healthier we're going to be. So this was just, I just happened to be in the right time and right place. And to be honest, I'm not particularly entrepreneurial. So I wasn't super motivated to go out and start my own company and raise funds to get this done and dig my heels in with regulatory issues. You know, it just, again, it was it was me trying to get our simple life back and starting a business around it was would have been a huge risk. And that's something that I was particularly interested in doing.


Stacey Simms  33:22

Are you happy with how it turned out?


John Costik  33:24

Yeah, yeah. I mean, if I had tried to commercialize it, how many people would be using it? Maybe not? Right, maybe it would have fizzled, and people would still perhaps be waiting for the G phi or the share. If if that group hadn't come up and sort of opened the FDA his eyes to that need. So yeah, I think it's, at this point, the best possible outcome I could have imagined and the appreciation from folks, and I don't deserve nearly any that I get, you know, it was a small part of the story. It just happened to be, you know, early on, but just that outpouring of gratitude, I mean, no one could have paid me enough to counter that.


Stacey Simms  34:05

And you are no longer doing software for Wegmans. Which is is that correctly, first of all, which is a fantastic supermarket up in upstate New York and across really the lot of the Northeast that people are familiar with, and I used to shop there all the time when I lived in New York, but you're not there anymore. What are you doing?


John Costik  34:22

So I've moved over to the University of Rochester Medical Center. So I was looking for something in health care, because I knew, you know, that's kind of where my heart was at this point was really to help find similar needs throughout health care. So I didn't want to just do type 1 diabetes work. I really wanted to dig in and see see what else we could do. Across the wide spectrum of, of conditions and, and whatnot. So there was a position open. At the University of Rochester Medical Center, a new group called the Center for Clinical innovation. I came in and got talking with, with the leaders of the group, this surgeon, Dr. Dave Minton. And then Chris de Silva. Were the primary folks in the group. And we kind of hit it off. And I showed him what I built for Evan. And they said, Hey, I think you'd be a perfect fit for our group. And the rest is sort of history. So I left Wegmans at the beginning of June and have been here and working on software that's very patient centric. And


Stacey Simms  35:35

I'm not just for diabetes,


John Costik  35:37

no, not just for diabetes. So the main piece of software that our group has written, will go out to all the clinics, or potentially all the clinics, they'd have to opt in to all the clinics at the University of Rochester Medical Center. So the entire health system, which is a big system, so we've built a tool that can aid all the clinics in gathering and interpreting patient reported outcome data. So that's, that's been a big push. And then I do have some projects that I can't announce yet, for those that are diabetes related, because they obviously know that that's always going to be a passion. So if I can work with the endocrinology groups here, to sort of advanced them along in their technology and how they use it at the clinical level, and how we can ease the movement of patient data to them. And while keeping the patient data, very patient centric, and give them ownership of that data is is sort of sort of a goal there. But there will be some, I'll have some announcements at some point.


Stacey Simms  36:39

That's great. Well, congratulations. It sounds like the perfect job. And it's wonderful for the rest of us who are waiting to see what you're working on.


John Costik  36:46

Yeah, no, it's it's been great. And it's a it's a dream job. I can't complain.


Stacey Simms  36:51

It's nice when those things can happen. Well, I'm curious, does your daughter she's just a couple years older than Evan, right? Does she want the technology if she asked me for a cell phone and that sort of thing.


John Costik  37:01

She does have a cell phone and Pebble watch. But we don't make her run. You know, our watch face on it. But it's for an in basically and we told her it said this is you know, since you have to sit with your brother on the bus anyway, if there were ever an issue where his blood sugar started dropping quickly, we we gave her a tube of glucose tabs and, and a cell phone so we can we can get ahold of her on the phone. You text her and say, Hey, give your brother half a glucose tab, which we've only ever had to do maybe once or twice.


Stacey Simms  37:31

But she said she still likes him probably because I have an older sister younger brother situation here in my house. And when they were under 10 she was super helpful. And now she's a teenager. It's like nothing to do diabetes. It's just your stinky younger brother.


John Kostic  37:43

Yeah, yeah, I could. It seemed that coming.


Stacey Simms  37:47

Still help him she'd always help him. But


John Costik  37:49

I think they're both I mean, I'm biased and all but they're both very sweet and compassionate. How old?


John Costik37:54

Are they?


John Costik37:56

Nine and so yeah,


Stacey Simms  37:57

of course. Yes, of course. Then they always will bait


John Costik38:01

breaking breakfast time where they can just they're just nice. Okay, yeah.


Stacey Simms  38:08

It's all good stuff. It's all good stuff done caustic. Thank you so much for joining me. I spent a lot of time in upstate New York and central New York. So it's fun to talk to you from the Rochester area, right?


John Costik 38:18

Yeah, you weren't circulator.


Stacey Simms  38:20

I was in Syracuse, Utica. My husband is from Utica.


John Costik  38:23

Yeah, my dad went to cert Su and


Stacey Simms  38:25

excellent. Me too. That's great. Well, thank you so much for joining me and I can't wait to see what you're working on. Next. Please let me know. And we'll get the word out.


John Costik38:32

All right. Thank you very much.


John Costik38:39

You're listening to Diabetes Connections


John Costik38:41

with Stacey Simms.


Stacey Simms  38:44

Quick behind the scenes story about this episode from back in the day. I remember when my editor and I think it was I don't remember it was John Bukenas. Sorry, john, as you're editing this, I don't remember if it was john. Or if I was still working with somebody else at that time. I listened back I proof. Listen, I call it to every episode kind of like proofreading your work. And I got it back. And I was so excited because as you know, I'm so excited by the DIY stuff, even though I don't understand half of it. And I couldn't wait to listen to it till I got home and I was at Benny's baseball game. And it was such a great mom. I'm like, No, I have to listen to this. So I'm listening. I'm walking around near the baseball field, kind of watching the game kind of on my phone. And this was at the time when we did not have share. But he did certainly did not have a cell phone. And we used to hang the Dexcom receiver by a clip on the dugout on the wire mesh of the dugout. We just just hang it there and like casually walk by occasionally or just really rely on the alarms to go off. I love baseball for diabetes. For a slow game. Somebody pauses so many times to treat. I mean, the only thing that's problematic is sliding. And you can kind of figure that out by putting the Dexcom or putting your pump site in different places. But I will never forget right by Davidson Elementary School in the ballroom builds over there walking around and listen to playback of that original episode back in 2015.

Okay, well thank you to my editor john Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I will see you back here next Tuesday for our very next episode. Until then, be kind to yourself.


Benny 40:23

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

Apr 20, 2021

This month, Don Muchow became the first person to run from Disneyland in California all the way to Disney World in Florida. It's a pretty amazing story when you consider that when Don was diagnosed with type 1 back in 1972 they told him that exercise was too dangerous. He wasn't even allowed to take part in his school's gym class!

Don shares how he made the turn to ultramarathons and beyond and what led him to make this incredible coast to coast journey. He had to contend with COVID delays along the way and got a terrific surprise when he arrived in Orlando. Plus.. what's next? He's already thinking about another incredible goal.

Learn more about Don here

In our Innovations segment, a seven day pump inset? And

some of our favorites have a little fun with a donut demonstration.

Stacey mentioned a new link for Dexcom and Medicare this week. Find that here. 

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

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

Join the Diabetes Connections Facebook Group!

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

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Episode Transcription below



Stacey Simms  0:00

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


Announcer  0:22

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:27

This week Don Muchow just finished an incredible run from California's Disneyland all the way across the country to Disney World in Florida. diagnosed with type one as a child, Don wasn’t an athlete in his early 40s. He decided to try working out but then he got some bad news. His eyes were in trouble.


Don Muchow  0:47

It was like a punch in the gut to get that laser retinopathy treatment after I had made the decision to be healthy. And I made myself a promise that if I could just have a do over, I will do it over and I just kind of not looked back since then.


Stacey Simms  1:06

He’s definitely not done. He’s 59 and he has yet another big goal. I'm so excited to share his story

in our innovations segment, a seven day pump inset and some of our favorites. have a little fun with a doughnut demonstration. 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. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new welcome. My son was diagnosed with type one back in 2006. Right before he turned to my husband lives with type two diabetes. I don't have any type of diabetes. I spent my career in broadcasting and that is how you get the podcast.

My guest this week. Oh my goodness is Don Muchow. He made national news last week when he finished a coast-to-coast run. He calls himself a type one diabetic extreme ultra runner and Iron Man boy is he ever I wanted to read you a couple of highlights from Don's website. So here's what he did before the accomplishment we're going to talk about today in 2019, who ran across Texas he holds the fastest known time record for doing that. 2018 he completed relay Iowa which is 339 miles in 2018. Sioux City to Dubuque first ever solo finisher of the longest us relay first ever T one D finisher 2017 capital to coast race 223 miles, Austin, Texas to the Gulf of Mexico first ever to Indy solo finisher, and on and on and on, I will link up Dan's website over at Diabetes and in the show notes, and do yourself a favor because that wasn't even a quarter of the list of stuff that he has accomplished.

And as you heard, he was not always an athlete. His story is even more amazing. When you find out that when Don was diagnosed in 1972, he was told no exercise too dangerous with type one, not even gym class, he was not allowed to take gym class, I will let Don tell you how he overcame that type of thinking to become the incredible athlete that he is now and he has great advice for those of us who want to be more active but are not ever going to run across Texas, let alone across the country. And that is coming up in just a moment.

But first Diabetes Connections is brought to you by Dario. Bottom line you need a plan of action with diabetes we have been very lucky that Benny’s endo has helped us with that, and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of A1C within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my forward slash Diabetes Connections for more proven results and for information about the plan.

Don, thank you so much for making some time with me. I really appreciate you coming on.


Don Muchow  4:26

Thank you very much. I'm happy to be here.


Stacey Simms  4:28

How are you feeling this morning?


Don Muchow  4:29

Oh, hungry and tired. Oh


Stacey Simms  4:33

my goodness. You know, I'm not sure where to begin because there's so much to your story. But I guess let's start with my biggest question. And I always have this for people who are ultra athletes and do these incredible incredible feats. Can you tell us why you would do something like this? When did the idea enter your brain that this was a thing you wanted to do?


Don Muchow  4:55

We started thinking about the run about three years ago. And our primary objective was to get the word out to other type ones who are living with the disease. That while exercise can be justifiably scary, because low blood sugars can lead to seizures, and consciousness, even death, the long term complications from avoiding it entirely as I had done for the first 30 or so years, since my diagnosis are really pretty awful, I wouldn't compare it to the remote possibility of a trip to the ER for incredibly low blood sugar. And it's a snake in the room that you have to face. You can't ignore it, and you can't freak out about it.


Stacey Simms  5:42

You said we and our there what Tell me about your team. Before we go any further.


Don Muchow  5:47

I often tell people somewhat jokingly that I just do the running. And my wife and crew chief Leslie does everything else. That's actually pretty close to true. I started calling her mission control. Once we got started, we got closer to the Space Coast.


Stacey Simms  6:01

That's great with a run like this. And well, I want to talk about, you know, other feats that you have done. And you already mentioned, you went so long without regular exercise. There's so much to this story with this run. What did you think because you started this mean, COVID really threw you for a loop, we'll get into that. But when you were starting out what was the plan,


Don Muchow  6:22

we had spent probably about a year getting the route laid out so that it was safe enough to do, we were conscious of the fact that some people might want to do that same route again. And the last thing we wanted was for someone to die trying. When we started thinking about sort of putting feet on the ground, we went out and scouted the route in the car and made sure that I was comfortable with a train and with the route that I would be running. And we still run into obstacles, but it sort of helped us get our mind around the idea of what it would be like to run across the country. Wow.


Stacey Simms  6:58

What kind of things do you look for when you're scouting it out? Is it roads? Is it towns to be able to drive on?


Don Muchow  7:05

You're right on all three of those. We wanted a route that I could run that the van could drive as well. Wouldn't be much use, especially with type one, if I ran 100 miles of trail in Arizona, and there's no way to find. So we wanted a route with wide shoulders, relatively low traffic that the van to drive most of when we were in metropolitan areas that had bike trails. That was the one exception where we just kind of let me run on the trails because they had always pop out to CBS or gas station or something like that.


Stacey Simms  7:39

And why Disney to Disney was that geographic? Are you a fan?


Don Muchow  7:43

I am a fan. My wife and I are both big fans. Disney has been credited for saying something about how If you can dream it, you can do it. And that seemed like a sort of an anthemic statement, but really the the actual route from Disney to Disney was a bit of a happy accident. We originally planned to run from basically from LA to the Space Coast. And a friend of mine said, Oh, well, so you're running from Disneyland or Disney World. And I you know, I didn't have that idea. But that is brilliant. We decided to switch it up just a little bit to do the Disney Disney piece inside the transcontinental run.


Stacey Simms  8:18

Very cool. Oh, that's great. So you started out I remember when you put your feet on the ground and got going. And at that time COVID was not really a thought. When did you realize that you were going to have to make some changes


Don Muchow  8:31

that occurred to me in I think it was about end of the second week of March of 2020. When we were making a restock stop, and big spring, Texas, and we stopped at Costco and they were out of water and out of practically everything else we needed. And we began to get Inklings that it was going to be impossible to resupply the van and we were looking at lockdowns in my hometown. And we thought about, okay, well can we make it to Dallas. And if we did, you know, there will be facing an empty refrigerator. So we decided to kind of be planful about how we were going to sort of pause things and pick it up when it got safer to do so. We had to pause on March 22 or 24th. I don't remember exactly what we picked up again on September 24. ran for about a month and had to pause again because the numbers east of Texarkana were looking bad. And then we finally resumed the last third of the run and on March 2 of 2021 and made it to the coast.


Stacey Simms  9:40

Wow. And pardon my ignorance here when you're marking an event like this or a feat like this. Is it days, hours just miles done? Are there differences in how you market and how if somebody's officially marking it


Don Muchow  9:52

mentally I'd look forward to the next big town. Whatever comes actually the next town of any sort. You Usually what that means is, you know, gas stations, lodging, that sort of thing. And when you're out there in the middle of nowhere, that takes on a special significance. In terms of documenting the run, we originally set out to document it more thoroughly when we thought that there would be records that we might bump up against. When we found out that on this particular route that no one had actually done Disney the Disney before we relaxed a little bit, but still kept marking our progress, we have a live GPS tracker that kept track of where I was, every moment, I have two GPS watches that have my workouts recorded. And we also have the recommendation of an organization called fastest known time, timestamp selfies next to unique landmarks. So in terms of marking our progress, very, very hard to cheat on a route like that if you have to be at a certain place at a certain time, and the only way you can get there is to run. So we documented our progress. using those tools. I


Stacey Simms  11:03

guess what I also meant was in terms of the time break that you had to take because of COVID do you count just the time running then for your you know, the way you clocked it,


Don Muchow  11:13

we did taught up the time total time we spent running believe between the two Disney's It was 88 days, and it was 90 coast to coast records organizations, especially fastest known time, care about the entire time it took you especially if there's no starting gun, that's typically where people like fastest, sometimes calm pick up. It's elapsed time. So if you're visiting the bathroom, you're still on the clock. If your technique picking the lunch break, you're on the clock, we realize that while this might be the fastest known time from Disney to Disney, since it's the first, it'll be a record that's easy to break for anyone that serious about it. It really will only take them about three months to do it at my pace, and many people are faster than I am. So we take comfort in the fact that we drew some attention to type one and exercise. And that this was a bit of a bit of a media event because it was the first Yeah, definitely helped us get the word out.


Stacey Simms  12:10

And I don't mean to take anything away from it. I'm just trying to figure out so do you have to count it on February to April? Or do you just count the time running? I guess would you have to count the COVID break?


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


Don Muchow  13:21

Personally, I count the whole time. It is what it is.


Stacey Simms  13:24

I have a few more questions about the run itself. But I want to go back and talk to you about you mentioned the 30 years you spent not really exercising, it's hard to believe but when you were diagnosed, you were told it was too dangerous. Is that really a factor said tell us about that.


Don Muchow  13:41

I was diagnosed in 1972. And people who are considerably younger than me may not realize that glucose meters weren't invented or weren't publicly available until the early 1980s. My first glucometer was this massive brick shaped thing that I got, I think it was either 1982 1983 prior to that, really the only way of telling what your blood sugar was not what it is. But what it was, was with a urine test and all that really told you as past history. It was justifiable given the circumstances, that if there was no way other than a trip to a hospital to have a glucose test done, that if you couldn't tell how low your blood sugar was, and you were feeling awful and faint, and you know, on the verge of passing out that maybe it wasn't so good to do things that cause a drop in blood sugar problem was that, you know, after 30 years, glucose meters had been around for a while at that point. And I didn't change the advice I was following. So that's on me. But I think a lot of people even with glucose meters are justifiably scared that if they can't stay on top of a severe drop in their blood sugar that maybe this is not for me to do. We face challenges during these long runs. And because I'm type one, like a lot of you out there, you know I gotta face the same challenges and Many of them aren't easy, but I just keep thinking about the turn, I almost took down the road to being visually impaired and having circulatory problems. And I'm just so glad that I went ahead and face those risks. Wow.


Stacey Simms  15:15

Do you remember what it was that made you think I've got to move forward with exercise? I've got to change this. Yes, please, please tell me what you answer that the first thing you did wasn't a marathon.


Don Muchow  15:27

Not a marathon. It was in 2004. I had gone to see my retina specialist who had been monitoring proliferative retinopathy and my left eye. And it had come to the point where he recommended a laser retinopathy treatment, I think those are deprecated. These days, I think they use an anti inflammatory injection now. But back then the recommended treatment was laser treatment of the blood vessels in the eye that were leaking. And it left me with a blind spot. And I asked my retina specialist at the time, well, what does the future look like for me? And he basically said, Well, I'll have more blind spots if you don't do anything. And I had already made a decision that year, that after finding out was short of breath going up the stairs, that I wanted to be healthy, signed up for 5k turkey trot, and it was like a punch in the gut. To get that laser retinopathy treatment. After I had made the decision to be healthy. I made myself a promise that if I could just have a do over, I will do it over. And I'm just kind of not looked back since then. I actually have a little bit of a concern that for many years that once I got to the point where I finished a run across the US that I would turn around and go Okay, now watch, and and not run anymore. But I've taken up swimming. So hopefully that'll help.


Stacey Simms  16:51

And I'm trying to do the quick math, you're done. But how old? Were you in 2004?


Don Muchow  16:55

I think I was in my early 40s. I don't know the exact age, I think it was 42. But I'm not sure about that.


Stacey Simms  17:02

I only asked because you didn't change your mind when you were 22. Right, you didn't start exercising at a super young age. I think 42 is still very young. But it's not, you know, you're not a kid, if you're making decisions a little bit later in life. And the results are phenomenal. I mean, I just can't believe that,


Don Muchow  17:18

I actually think it was something of an advantage to start once I had a gray beard because I have lower expectations of myself. And I think as you push the distance, it's good to remember that not everything in life is achieved by going all out. I progressed slowly to longer and longer distances, probably around 2011, I had gotten used to running marathons and I realized that wasn't getting any faster. There was an ultra, I think it was a 50k in Fort Worth that came up on the radar. And I thought to myself, well, that's only five miles longer than a marathon. Let's try it. I did find it. There were only 400 people in that race that signed up. I think it was like 25,000 or something and signed up for the marathon, but only 400 for the ultra. And it was kind of a nice feeling to realize that, you know, the bulk of the work was behind me. And really now it was just seeing how far I could go. And I began to realize that, you know, if I sort of run my own pace, which is relatively slow, that pushing the distance was a more interesting challenge to me than trying to run faster and risk injury.


Stacey Simms  18:27

By the way, as a mom, I have to say, is that a Dexcom? Beep You good? We need to take care of any.


Don Muchow  18:33

We're good. I have lunch just a little while ago. So it's probably complaining about that.


Stacey Simms  18:39

I'm sorry to be if that's a rude thing to say.


Unknown Speaker  18:41

No, no, no, no, it's we're all tribe.


Stacey Simms  18:45

Thank you. So let's talk. I have some questions from my listeners. But let me ask you a couple more Disney questions. There's this great video of you finishing at Disney World. What was that like? And did you know that they knew you were coming and we're going to be celebrating like that?


Don Muchow  19:00

I knew absolutely nothing about it. We actually were talking just before at our last aid stop before we ran up to the Magic Kingdom about what would happen when we got there. We had thought okay, well, you know, we don't want to serve the Disney guys, we, you know, we realized that's private property, not officially part of the run because we had made a rule for ourselves that we would not run on private property. And when we got to the contemporary zero security guard said, Oh, are you the runner? And my first thought was, oh, guy, we're gonna get escorted off the property and they knew we were coming. And I said, Yeah, I'm the runner. And he said, Okay, well, hang tight. We got some friends waiting for you at the gate, ran over to the gate. And there were probably two or 300 Disney cast members waiting, all cheering. There were people lining the run up to the gate. And when we got there, most of aliquot the president of Walt Disney World presented me with a custom Mickey Mouse cat that said Disneyland The Disney World and escorted me into the park and said, have fun, do what you want to do, we'll pay for it. Wow. And I had an ice cream cone. And I wrote, it's a small world. And I had 50 more miles to go. So I went back and finish running. But it was the most magical time in the world. I just can't thank those guys enough. That was this awesome surprise party.


Stacey Simms  20:20

Do you know who told them? I mean, we


Don Muchow  20:22

all knew your guy, some sneaky person, I don't know. Actually, I actually have many, many months ago at contacted Disney media relations to see if anyone had run from Disneyland Disney World. And then they kind of went radio silent for a while. I suspect that what happened was that they waited for a while to see if it looked like it was going to finish. And then when it looked like it was actually going to happen. They're like, Okay, this is something noteworthy, and let's be there, and let's make his dreams come true. It was amazing. Finish the second finish line on the coast and Indialantic was almost as awesome because I really mostly expected my bio dad and his wife to be there, my brother and his wife. And you know, we'd all take some selfies and celebrate the fact that we got there. And there was a bit of a crowd and make the deputy mayor of Indialantic was there and had swag and other things. If somebody brought me a Red Bull. And I needed that. So it was it was pretty awesome. To have the two finish lines was kind of a bonus.


Stacey Simms  21:26

And just to be clear, when you said after Disney World you had 15 miles to go. Is that the same day that you did this? Yes,


Don Muchow  21:33

yes. The same day. Our plan was to stop in Kissimmee. Right at the turn to 192, which has toward the coast. I think we finished that day at 31 miles. You know, originally, when we didn't think there was going to be much of a fuss at Disney, we were hoping to do more like 3436, something like that. But we actually got in about 50k that day, and I was pretty happy about that.


Stacey Simms  21:57

The next question from my facebook group is about how did you manage blood sugar along the way, I know there must have been lots of ups and downs and things like that. But can you give any advice especially for the athletes who are listening in just on you know how you manage such a, an endurance feat?


Don Muchow  22:15

A couple of things. One is that it's important to be aware that while cardio can make you insulin sensitive, pushing it to the point where stress becomes a factor, the stress hormones can actually reverse that effect a little bit and make you a little more insulin resistant. I like to tell people that that's your body pumping you full of hormones and energy so you can run away from the cheetah. So that's an effect to be aware of my wife, Leslie, who managed all the food, made sure I got enough calories every day did a good job of watching my sugars on Dexcom follow. So generally speaking, when I got to the van, she knew what kind of fuel I needed and had it ready. In terms of using the settings on my T slim Tandem pump, I had to run it in sleep mode most of the time, because I was fairly insulin sensitive during the day and unless blisters or heat were bothering me, the biggest challenge was keeping my sugar up. I found that even in exercise mode, it was those teeny little too much. So I would say if you're going to run 100 milers, 200 miles, that sort of thing. Think about sleep mode, and not just exercise mode. That was something we had to do.


Stacey Simms  23:32

The same person wants to know how many pairs of shoes you went through.


Don Muchow  23:37

If you count just the ones that I wore out, it would be seven, I had a custom pair of shoes equipped with velcro all the way around the top and sand Gators. Same with the ones I use in the Mojave that I put put on for the beach. So that would be the eighth pair. So eight pairs of shoes, including the ones for the beach.


Stacey Simms  23:59

Oh my gosh. And if you could briefly and I will I will get you out of 1030 I promise. Just a couple more quick No worries, we


Don Muchow  24:06

can run a minute or two. Okay. Okay, NOT HAVE NOT HAVE NOT a half hour


Stacey Simms  24:09

Oh, no, no, no, no. Um, another question here is what did your training schedule look like? How do you train for something like this,


Don Muchow  24:17

um, I have a hilly 50k route that I typically do training runs on. I borrowed it from some cycling friends of mine who wanted a route with a lot of hills in it. And I typically try to go out and run that in every kind of weather that I could. During training, I would take I would take the rest day in between training days, but every once in a while I would run three or four days in a row, you know, do the same 50k route. Generally speaking, I didn't train above a 50k distance because I didn't expect to do more than 35 miles a day on the transcon I'm for Texas. We train a little bit longer per day. And for Iowa, we were training like 15 miles a day. But there's just no way for me that I could keep that kind of keep up a distance beyond 35 miles a day for 100 days.


Stacey Simms  25:15

When you're doing something like this, do you try to eat the same stuff all the time? Do you? Are you able to bury things? How does that work for you,


Don Muchow  25:23

um, I tend to gravitate towards some things that I liked. We also paid a lot of attention to trying to get things into me that had protein so that my muscles could rebuild a little bit better overnight. So we ate a lot of hummus, a lot of yogurt, chicken salad, that sort of thing. I got to a point where I didn't want hummus. Yeah, we ran out. We ran out, we ran out a chicken salad before I hated it.


Unknown Speaker  25:54



Don Muchow  25:57

with I'll see hydrated attempted to taste kind of pasty to me. But we would start putting those little mandarin orange cups that you can get at the grocery store, we would put those into yogurt to make it a little a little wetter. And it was a great fuel source. I mean, it's protein, fat, a little bit of sugar. So we I had a lot of that. If I needed carbs, we you know we'd throw in a Oreo or another butter or something like that. But we really paid attention to trying to get the calories and to me. I went through about probably 4000 5000 calories a day. Wow, if any less than that I was losing weight.


Stacey Simms  26:39

Did you did you have to treat lows along the way a lot of them or were you able to kind of manage by what you're eating. And with the sleep mode, as you said,


Don Muchow  26:49

I'm most mostly we managed by eating in sleep mode. We didn't run into a lot of lows on this run. And by that I don't mean to suggest that we had a lot of highs. On the days that were upwards of 35 miles. I tended to have more persistent highs until I went to sleep. And then of course my sugar's dropped very rapidly at that point, we had had previously had a run in with a severe low back in 2019. When I ran across Texas, there was a section between Kermit and Odessa that was very stressful to me. And my sugars had run high the whole day as a 41 mile stretch. And I basically kind of burned up my glycogen was under fueling because my sugar was running high from stress. And then that night when I went to sleep, my sugar dropped to 20. And for anyone here who's not from the US, that's probably one millimolar something very close to that, and, and was wavering in and out of consciousness. And my wife had a glucagon rescue kit that she used on me and I God knows how many carbs for my sugar, what came up. We learned to be careful about that and pay a lot of attention to whether the highs were due to over fueling or stress. And if it was stress, we treated that very differently than we did. You know, overeating. Stress, we typically found that dosing Just a little. And actually taking on food even though my sugar was high, was the best way to get my body to sort of calm down. Otherwise, I would just run high until I fell asleep and then I dropped like a rock.


Stacey Simms  28:38

I'm laughing with this question, because we debated in the group. But this question came up. Ask him what he's going to do next. I do have another?


Don Muchow  28:50

That's a good question. Um, I have been, I've had my eye on solo swim around keywest. That's not as amazing as it sounds from a type one perspective. My good friend Karen Lewin was actually the second type one to solo swim around keywest. I don't remember the name of the first one. So but I would be joining a club of people I'd be very happy to be a member of that's a 12 and a half mile swim. During the COVID pause, I switched to swim training because I needed to do something to break up the run training a little bit it was getting monotonous without knowing when I started again. Yeah. So I've got that swimming on my mind to do after this. But at the same time, I think I need to take some time off, recover. Just relax and sort of let my body sort of recalibrate to what normal life is like.


Stacey Simms  29:46

And I have to ask you mentioned they said Disney World. Come on in and do whatever you want. It's on us. He had an ice cream cone and you did small world, small world on why


Don Muchow  29:59

I have some real Very pleasant memories, from my childhood of riding that ride. It's always been there. And it's quiet. And one of the things that I found on the out on the run was that I would get something a friend of mine called it sympathetic nervous system overload, basically being two or three feet from traffic. for hours on end, I got to the point where I was kind of jumping at loud noises. So we really loved It's a small world. And that was one of the reasons we chose that. And it was our favorite ride anyway, so


Stacey Simms  30:38

I love it. Hey, before I let you go, any advice for people listening who are you know, they're running five K's or they're maybe just starting exercise with type one. And, you know, not planning to do what you've done. But a little nervous, but a little excited about exercise. You know, what do you tell people like that.


Don Muchow  30:59

Um, if you have a bad day, it's just a bad day. Don't kick yourself for mistakes. Don't kick yourself for things that don't go the way you expect, um, look at it as a chance to learn something. Even bad blood sugar Day is a chance to alter your plans, change something in the way that you manage your sugars during exercise. But above all, don't give up. I said


Stacey Simms  31:23

that was my last question. But something else just occurred to me, Don, have you ever gone back to the doctor, or anybody from kind of your previous life?


Don Muchow  31:32

I have. And things have been stable so far, we're going to kind of thoroughly check things out to make sure nothing's changed after the run. But we'll see how it goes.


Stacey Simms  31:42

Yeah, but they've got to be so excited to see what you've done.


Don Muchow  31:46

My endocrinologist is pretty excited. I'm hoping to see him here in about a month or so. And we'll check in with each other and see what we can tell from the numbers. Well, Don, thank


Stacey Simms  31:59

you so much for spending so much time with me. I really appreciate you coming on. Congratulations. And I got to tell you, I think what you should do next is is rest stop and put your feet up for a little while. But I know that's not going to happen. But thanks for being here.


Don Muchow  32:11

That sounds like a great idea. I'm happy to be here. And thank you so much for your time.


Unknown Speaker  32:20

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  32:26

More information about Don in the show notes or Diabetes linked up to all of his amazing accomplishments. I'm still a little speechless. What a thing to do just to think of doing these incredible goals and getting them done. I know that people like Don will say, well, it's just a matter of training, and then you put one foot in front of the other. But my goodness, it's pretty amazing stuff. Innovations coming up in just a moment. We're gonna talk about what looks like a pretty big move from Medtronic in terms of longer where pump in sets.

But first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. You know, why not? It's not as though you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G6 continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes, and intensively managed insulin, you may be covered. To find out more about what that means. And if you qualify, check out backslash g six dash Medicare, you're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money. Learn more again that link I'll put this in the show notes too. It's backslash g six dash Medicare.


Innovations this week, one medical story and one donut story. Let's do the medical one first, interesting news from Medtronic, they have launched a new line of what's been called insulin infusion hardware. They've launched this in Europe, that basically doubles the time you can wear it so you know, if you were an insulin pump, you know, as you listen, you have the inset on your body. It's the way a tube pump will connect to the Omni pod has this too. It's just a little different cuz it's kind of hidden in the mechanism. But they all have this way that you insert a needle the needle comes out and the catalyst is under the skin with the adhesive and the connector part above the skin. I used to describe it looking like a tiny nicotine patch with a bump on it. They last about three days. You're supposed to change them every two to three days to avoid infection and scarring and clogging and that stuff, but Medtronic says that they have one that will last seven days.

And we talked about this when I spoke to Medtronic Sean Salmon back in oh I want to say October of last year was the fall of last year. He mentioned this. He said that the tubing set is what he called it would go from two to three days to seven days. And he said the way they were doing that I'll link up the episodes you can listen again, is that it has to do with the way that they filter insulin. Through the inset. He says that the preservatives in insulin are what causes the site reactions and the clogging and that kind of thing. And they found a way, you know, obviously, it's proprietary didn't go into too much detail. But they found a way to work around that. This is really interesting. I'm surprised this didn't make a bigger splash. This is a huge deal. If it works as well as we would hope to be able to where your pump on your body for longer without scarring or issues or that kind of thing. So European friends, if you're using it, you hear about it, talk to your endo about it, let us know how it goes. And we will wait for more information on the Medtronic seven day inset.

And the other story I wanted to bring you in innovations is the I don't know if it's a medical innovation, but it sure could be helpful that fabulous people at TCOYD take control of your diabetes released a video that many of you sent to me and it was just fantastic. I wanted to share it, it is how to eat three donuts and stay in range. And this is Dr. Jeremy Pettis, Dr. Steve Edelman, and they basically have a demonstration. But it's really a kind of comparison of how they would each do it. And they show you they eat three donuts they take you through, they're using a Dexcom to kind of show the results. It is a Afrezza the inhaled insulin, kind of versus timing of traditional insulin, I won't spoil the whole thing. It's fun to watch, I think they do an incredible job as always, of breaking down kind of complex thoughts and making them user friendly, I'll call it and they have such a great sense of humor, I really, really enjoy their stuff. So if you haven't ever watched any TCOYD videos, they have a ton of them. And their conferences are always a really good time too. So I will link that up in the show notes. But I would imagine you could Google how to eat three donuts and stay in range. Probably it'll pop up pretty easily.

Before I let you go, we did have our quarterly endocrinology visit. I always thought about putting it off because there's really nothing going on. Right now we're kind of in a groove or just re entering some parts of life. Knock on wood is you're listening this my whole family is vaccinated. Benny is two weeks past his I think I'll be past two weeks past my last one when this episode goes live. Yeah, it will be. And Benny has really re entered more of the real world very recently, as I've mentioned before he got a job. He's back with the wrestling team. He's not yet going to school. He's staying virtual, but he's back on the high school team. And you know, we've had some blood sugar issues as you would expect whenever you're going back to a sport after a long time not but he's managing them really well. So that I only share the endo appointment because he of course, we've known this guy for 14 plus years. He's taking his family to Disney World for the first time. And that's later this year. And that's what we spent mostly we've been talking about.


You know, my tips and tricks for Disney World, we'd have that episode last week, but his kids don't have type one. So it wasn't that relevant anything to have to listen to the podcast episode. And I realized I haven't been to Disney, you know, since COVID. Certainly. And I know that there have been some changes. So I'm fascinated to see that apparently, Fastpass plus has been eliminated during COVID, which was like my lifeblood when I go there, you know, I get this well in advance, listen to how excited I'm sounding just talking about it. But I get him in advance and we refresh 600 times a day and get all the rights we want. I mean, it's really, there's a science to it a little bit of madness to it, too. But it sounds like I'm gonna have to relearn everything. Because it sounds like they're gonna make a lot of changes when they you know, they really start opening up more, although disney world has been open really for months and months and months. But you know, when they start letting the bigger crowds back in, so that was fun. I love our endo. I feel really fortunate that we have the relationship with Him that we do. And the visits are now me kind of sitting in the corner. You know, me I stay, I can't stay quiet. But I do very little. It's really just a conversation between him and Benny and I feel really fortunate about that.

Alright, classic episode coming up later this week. As always, thank you to my editor, John Bukenas, from audio editing solutions. Thank you very much for listening. Hey, do me a favor, share the show. If you enjoy it. You think this is good information. If it's valuable or helpful to you in any way. Please tell somebody else in the diabetes community about it. Word of mouth is the best way to spread the word about podcasts and I really appreciate that. All right, I'll see you back here in a couple of days. Until then, be kind to yourself.


Benny  39:35

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


Apr 15, 2021

A Disney vacation can seem overwhelming, even without diabetes. Add T1D to the mix and going to Disney World or Disneyland seems like it may not be worth the stress. This Classic Episode has great tips and advice to have fun without slowing down (much) at the Disney Parks.

Stacey is joined by Disney expert Robyn Adams. Not only does she run the annual Diabetic Mousketeers event, she has three generations of type 1 in her family. We talk about dos and don't for getting a disability pass (and how to decide if you need one), making do without carb counts and managing everything from hydration to ALL the walking at the parks.

This episode first aired in December of 2015.

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Episode Transcription (beta version) 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff?


Announcer  0:13

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:19

Welcome to another classic episode of the show. As always, we're really glad to have you here. And these episodes, give me a chance to take a look back at some of the real early interviews we did here on the podcast, you might have missed this one. From December of 2015. All about going to Disney World. A Disney vacation is really like no other. And not only is it pretty expensive, but to get everything you want. You really need to have a plan. Seriously, have you been there, you need a plan. Now I have to tell you true confession. I am a bananas, Disney planner. I absolutely love planning trips like this, this may not be your cup of tea, maybe you're somebody who just goes with the flow. But I really think that if you have diabetes, you know if your kid or you as an adult, are going on a vacation, where you have to do this much walking this much line waiting, although we don't wait in lines, and I'll share my secret in just a moment.

This much weird food or strange food, the whole Enormousness that can be a Disney World vacation. Once you add diabetes to the mix, there's a lot to think about. That's why I was really excited to talk to Robin Adams. She is a Disney planner. She's a travel agent, she also runs a really big group that goes to Disney World there. They're on Facebook as well. She just knows her stuff. She also has a husband, a son, and a father in law who all live with type 1 diabetes. And as you're listening and planning vacations, you know after people have been vaccinated, and things are starting to open up again, as you're planning vacations and trips and you know, going back to Disney parks, or maybe the first time you're going I really hope this episode will help. I have to tell you though a little bit about my planning and why I am the way I am and I kid you not we really do not wait in lines. My family has been very lucky. We've taken several big trips to Disney World. We haven't been to Disneyland. But we've been to Disney World several times, not including quick trips. My parents are two hours south of there. And we do go to the friends for life conference which is in Orlando in July usually. So I'm not counting that because that's not a true what I would say you know, Disney couple of days or even a week in the park, that kind of thing. vacation. The very first time we went was with Lea was just four years old. And we just went for a day. We didn't even take Benny he was one left with my parents. We drove up from their house took that to overdrive. We ran all over the place. We had a great day it was in January, it was cold. So you know there really wasn't anybody there. But we met princesses. We had a princess dinner and then we headed home.

So that was the first time the second time when I took both kids. I didn't plan well at all. We arrived at one o'clock in the afternoon during spring break. Those of you who have been there and done that are either laughing at me or horrified. I've never seen that many people in one place in my entire life. We got to the Magic Kingdom at one o'clock. And it was so crowded. I didn't think we'd be able to move. And I was really concerned for my kids safety. We stayed I want to say an hour, I think we did. I don't even know if we went on a ride or did anything or saw parade. I think we saw one parade because we were just stuck there on Main Street. And then we left and we spent the afternoon at our hotel with the pool, which the kids thought was the greatest thing ever. I mean, they had such a fun time in the hotel. And then the next morning, we woke up super early and got to the park, I have a picture of us on the first boat from the Wilderness Lodge resort. And the moon is still out. I mean, we got to the park as it opened, you know, and it was spring break. So it's probably open at seven o'clock that morning and had a great, great three hours. And it was amazing. And that was the beginning of my Disney planning. And I have never gone back without a better plan that I'm going to talk more about it after the interview. Just some tips and tricks that I can share with you diabetes aside what I think you can do to make your vacation a lot more fun and make your money go further. But that is neither here nor there. We will get to Robin Adams to true Disney with diabetes expert in just a moment.

But first, this episode of Diabetes Connections is brought to you by inside the breakthrough. If you're intrigued by science, you don't get excited about the process of discovery and want to have the best stories at your next dinner party. This is the show for you. In the current episode they're asking and answering just snake oil actually contain snakes. Host Dan riskin is phenomenal. He is very entertaining and he really digs deep into these stories search inside the breakthrough anywhere he listen to podcasts. It'll be wherever you found this one. And this podcast is not intended as medical advice if you have those kinds of cases. Please contact your health care provider.


My guest for this classic episode is a travel agent, a Disney planner and the organizer of the diabetic Mouseketeers event. And that is happening this year, Memorial Day weekend, I will link up the information from her website. And you can learn more about how Robin Adams wants you to meet families share stories and experience the magic. It was excited to talk to Robin not just for the Disney experience here. But also because as I mentioned, she has three generations of type one in her family. So she really knows her stuff. quick heads up, we spend the first few minutes of this interview talking about her family and those three generations. If you're just here for the Disney stuff, then you should fast forward about seven, eight minutes in that we pick up the advice for going to the parks. Robin Adams, thank you for joining me. Welcome to Diabetes Connections.


Robyn Adams  5:59

Thank you for having me.


Stacey Simms  6:01

Before we talk Disney and we're going to talk a lot about Disney. Let's talk about about you tell me about your Diabetes Connections. Because this isn't just your child, your husband has type one as well.


Unknown Speaker  6:12

Yes, my husband had been married to for 19 years was diagnosed when he was 12 years old. So it's been an you know, part of my life for I've known him for 21 years now. So it's been there for a very long time. And then our son was diagnosed at age four, after we've been married for seven years.


Stacey Simms  6:32

What's that, like, from your perspective, and I'm sure your husband's is a bit different too. But when you have lived with type one with your spouse, but then your young child is diagnosed, how different was that?


Robyn Adams6:45

It was very overwhelming because the way we handled it in our marriage is my husband already had a mother. So therefore, I did not mother him I did not hound him. I did not say Did you check your blood sugar today? Are you supposed to be eating that? You know, I had no involvement whatsoever. He handled everything. Then there's also the drawback to that in the essence of I didn't really have a fully under standing of the disease. Because I was, you know, I was always kind of at an arm's length distance a little bit out of respect to him. Because I didn't want to hound him. I didn't want to stand on top of him. And you know, mother him basically. So we always kept there a little bit of distance. So when my son was diagnosed, Rob was still doing it the old method of three shots a day, using two different types of using the in in the art, he was doing the old fashioned mph method. Wow. And so he was not carb counting. He was not on a pump or anything. So when my son was diagnosed I was I literally had this fear, go through my head, oh my gosh, we're gonna get divorced, I'm going to kill my child. I don't know what I'm doing. No clue whatsoever. And since Rob was doing it, the old method, it actually was a crash course for both of us, which was wonderful. And honestly, diabetes did nothing but bring our family closer together. It gave me much more insight as to how it affected him day to day. He helped me see what my son was going through. And just he really helped to keep me grounded from not overreacting to certain things to show him that yes, he can survive. Yes, he can do this. It's okay. Not hovering, and just helping him live a full and enriched life because that's what Rob did for years and years through college. He was an avid rock climber, camper, hiker, everything. And he did all of that on, which kind of astounds me doing it on the NVH method, and not carb counting kind of overwhelms me with that thought. Yeah. Wow. So


Stacey Simms  8:57

did he change his diabetes management at all, seeing what your son had access to?


Robyn Adams9:03

Well, it was interesting the day that Robert was diagnosed, that Robert was diagnosed on a Tuesday, Rob was at his doctor on Monday right before getting fitted for his pump. Wow. And they he was supposed to be in his own carb counting education class Tuesday afternoon. Well, at that point, we are admitting Robert into the hospital for diabetes. And we had he had asked his doctor the day before he had said, we're starting to see a few signs and robber what, what do we need to do about this? And the doctor said, we'll go ahead and take a fasting blood sugar the next morning. And so we did it. We've checked Robert blood sugar ever since he was six months old. I checked it every six months pretty religiously, just keeping an eye on it. And but I tell you that one morning that was the hardest blood sugar to check because we had actually started seeing signs at that time. And we knew for a fact that's what it was and We checked his blood sugar was 158. And we called the pediatrician. We call him my husband's endo, and said his blood sugar is 158. And the guy said, well, that's not too bad. We said, this is fasting blood sugar. I said, Amy, call your pediatrician right away. And by the time we got into the pediatrician, his blood sugar was 425. And we were off to Scottish Rite. And that was it.


Stacey Simms  10:23

Now, from your son's point of view, though, you're four years old, and your dad has type one. And your dad is about to be doing the carb counting classes and the pump classes and a lot of things that you yourself as a four year old are going to be going through. Was he kind of do you think he thought at any point? Well, everybody's dad, everybody goes through this.


Robyn Adams10:41

Already? That was cool. Oh, yeah. He can't wait for me to be diagnosed. Yes, Robert, is now 12. But uh, you know, for years, it was the topic of conversation of Okay, Mom, what are you gonna have diabetes? What are you gonna join our club? Yeah, he doesn't under you know, he understands. But at the same time, it's like everybody else has it. Why don't you you know, and see on top of that, to my husband's father also has type 1 diabetes. Wow. So it's just it's a family tradition for this whole sailing. And Robert is waiting for that shoe to drop for me. That's funny. We were very fortunate when he got diagnosed at four, because he just he doesn't understand life without it. And he grew up watching his dad do shots and check his blood. So he became more like his father. And it just became even more of a way of life for all of us. Wow,


Stacey Simms  11:33

that's a remarkable story. Is your husband's father still alive?


Robyn Adams11:38

It has.


Stacey Simms  11:40

I always ask about things like that. Because I think for some of us, who had no experience with type one before my child was diagnosed nine years ago, and I didn't know anything about type one, really. So I'm always impressed. I think that's the right word. But I always like to hear about older people. How old is he?


Robyn Adams11:57

He is 7374 74. And he was diagnosed in his 40s. Wow. Which is, to me just wonderful that they caught it at that time as type one and did not try to label him as type two,


Stacey Simms  12:15

right? We hear a lot about Miss diagnoses like that.


Robyn Adams12:18

Exactly. That was that's always my biggest concern. When I do hear about adults going in and being diagnosed. And either their, you know, the parents of children that I know or spouses and I'm always so quick to say please, please make sure that they truly truly know that it's type one and not type two, just because when it goes overlooked for so long, they get so sick.


Stacey Simms  12:42

So, um, do the three of the boys talk about this? I mean, it just must be so funny to have. I don't know if that's the right word. Let me start again, is it do the three of them kind of compare notes?


Robyn Adams12:56

They do to a point, Wesley does still do the mph method. He's 70 or 74 years old, he's been doing this for a long time, you're not gonna change his method. You know, that's just the way it is. So they do compare stories, and Rob will try to give them helpful tips or try to say, you know, I really wish he would try to do it this way. And now He's good. He's got his way down. But you know, you just have to look at it from the perspective of the individual with the disease. You know, they're the ones who juggle and manage and live with the disease, if they're setting their routine and their way of doing things. It's really hard to get somebody to change, you know, because change could mean big things, good or bad. It can mean big. So we just try to step back and, you know, respect and understand that that's his perspective. But they do they talk about it a lot. And it's nice to have, you know, to two boys in the kitchen, treating loads together, things like that, you know, there's just kind of that understanding in the household that okay, this is what it is. We've got to stop, take care of it, and then we'll move on from there.


Stacey Simms  14:07

Let's move on to talk about Disney. How did you get involved? Your certified Disney planner is something you always loved.


Robyn Adams14:16

It is. I mean, I started going we started taking Robert when he was three. And it just kind of grew into a natural obsession to where we were going several times a year. And then a few years ago, we were in a position where the main business that I had, I was a home appraiser was starting to dwindle due to the economy. What gave you the idea to take your


Stacey Simms  14:40

Disney planning and diabetes and put the two together?


Robyn Adams14:44

Seeing the need for it. Seeing the questions on Facebook pop up over and over again. I'm going to Disney What do I do? Seeing the overwhelming feeling and feeling the fear come through people's post of how they just needed somebody to hold their hand for a few minutes to say you can do this. A lot of people once you've done Disney, you do understand you know, the loops, you know everything. But especially when you've been a first timer and you've never been, first of all Disney in itself is such an expedition, just dealing with all the ins and the outs, the resorts, the dining plan, the tickets, the four parks, the two water parks, then you've got Disney Land with the two parks over there, the rides, the attractions, the characters, taking all of that in, because you're investing a lot of money into this trip. So you want it to be just perfect, then when you throw diabetes into the mix, knowing that that could make your magical trip that you want to be so perfect, quite imperfect. It's a very daunting task for individuals. So I started to hear that in the post and started to see it and just realize that there was a need for it. So I just decided that Well, um, you know, this is what I do, I'll just start kind of tailoring all of my planning towards focusing towards families with diabetes.


Stacey Simms  16:09

And you do an event, we'll talk about the event once a once a year, right for families with diabetes. But before we talk about the event, let's get some advice. I mean, we've been to Disney many times, I'm what I would call myself a crazy planner. So I I take care of stuff. I'm good to go. I wasn't all that concerned about diabetes. But that's me. So if for people who are concerned and really worry, you know, where do you start them because as you said, Disney, in and of itself is a huge, huge vacation to plan.


Robyn Adams16:42

Really, I start mostly with explaining. For those who have never been to Disney, I explain what seems is basic knowledge to you and me who have been there 100 times explaining that they can take food into the parks, they can take a stroller into the parks, they can take their supplies into the parks. And you'd be amazed at just hearing those three things. Make them feel 100 times better. You know, just the simple fact that you can take in low blood sugar snaps you can take in your water, things like that just immediately helps parents feel a little bit better. Because that's their biggest fear is what if I get stuck in a line with a low blood sugar? What do I do? They need to know that they have access to their supplies at all times.


Stacey Simms  17:26

And you do I mean we've had that situation happen. We've had highs we've had lows, we've had to sit down in line for Peter Pan when my son was four and treat a low and we always had our stuff with us. And I love with Disney. You don't have to stash things in lockers like you do if you go to Universal.


Robyn Adams17:43

Universal you do


Stacey Simms  17:44

right you do to put things in lockers, although I have to tell you I am always the fashionable one with the small fanny pack. I look so cool. But a fanny pack is they'll let you on the rides. Even universal so I love the fanny pack is in my opinion is the way to go. I don't care how silly you look. I rocket my kids are mortified. I am embarrassment level expert. But it's much easier. I don't have cargo pants. I don't have all those pockets. But I like the fanny pack. Alright, so you can bring your low supplies in. You can have a stroller for little kids, you can rent one or you can get one for free at Disney. What about i would i always warn people about the amount of walking because man even though we've been several times, I always forget how big it is.


Robyn Adams18:24

Yes, you walk seven to 10 miles a day. Wow. Yep. And that's one reason why I push a stroller especially for anybody ages 10 and under. They they just don't realize the magnitude of what walking will do to the blood sugar. And even though I send children that are top athletes, you know as far as they are involved in a lot of competitive gymnastics, or baseball teams, football teams, all of that. She amusement parks are totally different creature. Totally different creature. You're just not prepared and no two children have the same reaction at the park. They can be high, they can be low, they can be both. It doesn't matter. You know, Robert started out when he was little, he would go low so often that we stopped doing insulin during the day and we would only do his lantis at night. That was all he needed. Yeah, because we would go into a meal and his blood sugar would be 80. And if we gave him his insulin within two hours, his blood sugar would be right back down to 80. And then we're having three lows the rest of the time. So we just when he This is when he was much younger. We just constantly treated semi loads. We stopped doing his mealtime insulin and he did great. Now as he's older I battle just as many highs as I do love all then he can spike up to 425 just as fast as he can drop drop to a 50


Stacey Simms  19:44

and I guess then the ultimate thing to bring some flexibility and some patients because a lot of people out there want the same result every day. And that's just not gonna happen.


Robyn Adams19:54

They do. I remember hearing a story one day of someone who changed somebody's child Pump site for different times in one day, oh, perm, and that that's what it was. And it wasn't had nothing to do with pump site. It's all the adrenaline, all of the craziness, the excitement, the heat, the dehydration, anxiety, everything. And I know the one thing that everybody gets most frustrated with is the fact that Disney does not provide carp counts.


Stacey Simms  20:25

Yeah, what is with that? I mean, we're beyond it at the point where you can we guess pretty well and everything but


Robyn Adams20:29

Right, exactly. That's kind of where we are.


Stacey Simms  20:32

I was really surprised they do so many things so well. But they don't do that.


Robyn Adams20:37

They don't, that I have been told it's due to the ever changing menu, all the different restaurants, they're changing their menus constantly, that they just can't provide it. I think another reason could be liability. But then when you think of the allergy liability that they take on with saying that certain restaurants don't have cross contamination, things like that, it's as much of a risk, but I just wonder if it's the liability of truly saying, Okay, this is absolutely, you know, this item has 12 carbs in it,


Stacey Simms  21:09

well, they're gonna do carbs, they probably have to provide all of the nutritional information. That was my thinking is that for some reason, it's just become, it's too much for them. But I, I'm really still surprised by that, especially when they do allergies. So well, they, we don't have food allergies in my family. But I've heard from so many friends and family who go, who say that's the place where they feel safe.


Robyn Adams21:29

It is that is that is the one thing that I hear over and over again, that is the one place that they do feel safe. So but one thing I do tell people is okay, so yes, it is true, Disney does not provide card counts. However, I have heard that a chef will come out and speak with you about how a meal is prepared. And that does help with any possible hidden ingredients that are in there. For example, over at the garden grill, they have a an oven roasted turkey that they do, well, they put a brown sugar like honey glaze on it. So that one little piece of information is kind of helpful, you know, for some maybe, you know, little spikes that you might say. But to be honest, when they I do try to explain to people is if you are used to eating out, it's going to be a lot of the same foods that you see eating out. So if you are familiar with going to Olive Garden and getting their pasta dishes or going to just Applebee's and Ruby Tuesday's things like that a lot of the meals you will recognize the buffets for the character meals do have fresh fruit in rolls and fresh salad, things like that. Once you see the food, it's not as daunting as it sounds. And usually what people will find is, a lot of the times they erratic blood sugars that they do start to see is not because they miscalculated the meal by 10 carbs, or 15 carbs. It's because of everything else compacting that blood sugar.


Stacey Simms  23:02

Does Disney supply water cups of water for free?


Robyn Adams23:08

They do. Yes, at any of the quick service places you can walk in and request a free cup of water.


Stacey Simms  23:14

That's something that our we live near Carolyn's amusement park here in the Charlotte area. And that's something that they do. And we take full advantage of that, because that's where we go mostly in the summer. And I couldn't remember if Disney had that, because certainly if your child has high, you don't want to restrict access to water.


Robyn Adams23:29

Right. So Talk


Stacey Simms  23:31

Talk to me a little bit, if you could about the passes now that Disney gives out my full disclosure is that we've never used or asked for a disability pass or guest assistance pass or whatever they're called. So I don't know much about them. Can you share a little bit about what they are and what your advice is about


Robyn Adams23:49

them. It is called the Disability Assistance service accommodation. My advice is, not everybody needs it. And that's perfectly fine. It's nice to get to have just stored in your back pocket, just to have just in case. But just because you get it doesn't mean you have to use it. So sometimes it's nice to go ahead and get it and plan for it. But there's nothing saying that you have to use it. During Christmas time during Thanksgiving, the really, really high peak times it is nice to have it. The way it works is it works like an additional Fastpass. When you go to guest Relations at any of the four parks, everybody in your group must be with you. And when you're going to the Walt Disney World parks and if you're staying on site, then you have magic bands. If you're staying off site, then you have the hard tickets. The Disney the DTS is actually electronically linked to those items. So you're not having to carry anything extra around with you. But you need everybody who you want linked to it with with you so that they can get everybody linked appropriately. And Disney wants to cut down on the abuse. Disney wants to see everybody who's involved. Technically, they want only six people on there. However, Disney does not want to break up groups and break up families. They know that people really want to be together. So they will go, I've seen groups as large as 14 and 16 placed on the DS.


Robyn Adams25:28

And what do you get for it?


Robyn Adams25:31

What you'll do is, you'll get your accommodation added to your magic banner, your park ticket at guest relations. And then like let's say, if you're going to Walt Disney World, you set up a Fast Pass ahead of time to ride Space Mountain at 11 o'clock between 11 and 12. Well, what you do is as you're walking over to Space Mountain, the Buzz Lightyear Space Ranger ride is right next to it, you would make a pit stop, go to the Fastpass line, say we have the DA s, they're going to look at the standby time, the standby time, for example, is going to be 45 minutes, they're going to give you a return time for that standby time minus 10 minutes. So they're going to give you a return time for 1135. If you're standing there at 11 o'clock, for 35 minutes from the time that you're requesting it. So then you're going to go in ride, Space Mountain, use your Fastpass for that, come back to Buzz Lightyear at 1135 or anytime after go through and you'll be able to go through the Fast Pass line at that time. It works as a secondary Fast Pass.


Stacey Simms  26:44

I'm going to ask you a gentle question. Do you think people with type 1 diabetes need this?


Robyn Adams26:50

I do. But I think it is very specific per person. There are a lot of children that go that don't need it. And that's perfectly fine. But there are a lot of children that go whose blood sugars are so much all over the place, that they feel rotten. And this just helps to expedite their day, it helps them to go through the day a little bit faster when they can use the Fast Pass and the DA s together. There are children that have seizures that are heat induced. So it just kind of helps to keep them when you're in the lines at Disney. Like especially like Thunder Mountain, in that you know all of that wood structure. And you're there in June and July when it's so hot. When you're packed in that line of all those people it gets really, really hot and stuffy. If you can be in the Fastpass line, it keeps you on the outside of those people for as long as possible. When you're in the standby line, you're in the heart of all of those people. So it just kind of exasperates the heat that the children might be going through?


Stacey Simms  27:59

Well, because I know you've seen this on on Facebook, you know, some will ask a question. And then it's five pages of judgment. And I asked you that question, because I think it's important that you make the decision as a family. If you think your child needs this and will benefit from it, it's available to you. If your child can stand in lines, and you're fine. And you know, like I said, we've never needed it. So we've never gotten it. I don't know much about it. But I would never judge someone else who feels that they need to use that. And I think it's unfortunate that that happens. Do you have to do you have to prove to Disney that you have type one? What do you do?


Robyn Adams28:33

Know and to be blatantly honest, type 1 diabetes is not technically approved in Disney's mind to receive accommodations. They do not understand diabetes.


Stacey Simms  28:45

So what do you what do you tell them? You say I have blood sugar issues?


Robyn Adams28:49

Yes, just like with any disease or condition that you are going to Disney with an African accommodations. Disney does not want to know the diagnosis, diagnosis period. The cast members themselves are not doctors and they're not therapists, psychologists or anything, so they don't have a full understanding of all of the hundreds of 1000s of different cognitive and medical conditions out there. Okay, so even children with ADHD and autism, there's such a broad spectrum of everything, that one cast member cannot make the determining factor of whether or not you need an accommodation simply based on a diagnosis. So it definitely does not help especially when in when diabetes is concerned to state diabetes by any means whatsoever. So what you do is you go in and you focus on the conditions and what you are most concerned about how you are concerned about lows could possibly induce a seizure, how highs could cause organ damaging ketones, things like that. You want to express another thing reason why I am an advocate of the DEA s pass for Children with diabetes, because it keeps you in that outside lane. Since the Fastpass line wraps around the standby line. It gives you an easier exit. So if you're is if your child is dropping from a low and the resources that you have on you are not enough to bring them up and bring them stable, you can exit that line a lot quicker. Or if your child is having problems with highs and is needing to use the bathroom a lot, they can exit the line a lot quicker to access the bathroom.


Stacey Simms  30:32

So what do you love about disney world? What brings you back time and


Robyn Adams30:37

time again? For us, we feel like it's an escape from our everyday world. It is so interesting how when you walk through those gates, it just literally does seem like you're transformed into another world. It just seems as though everything that you've just dealt with for whatever for the past six months or a year just seem to completely melt away. And you're in another zone.


Stacey Simms  31:00

That's how I feel like let me play make believe for a little while. What do you have? Do you have a particular ride or character experience or dining experience that you love?


Robyn Adams31:11

our favorites are even though my son is 12 years old, we still do Crystal Palace with every single trip. That's right. It's way the Yes. It is Winnie the Pooh. He is a die hard for that restaurant. And if we skip it on one trip, darn it if I don't have to take him twice on the next one. is just that as part of our team. Another love favorite is Thunder Mountain for him. And he also just still to this day love seeing as many characters as he can.


Stacey Simms  31:46

I was really sad when the last time we went, we went and I wanted to see the fireworks. I just wanted to sit and watch the fireworks and my children have no patience for that. That was not going to happen. And we did Thunder Mountain, but we did it during fireworks. That was really cool. Isn't


Robyn Adams32:00

that amazing? Yeah, that was great. We've done that too. And my son absolutely loves doing that.


Stacey Simms  32:06

Tell me about diabetic Mouseketeers. This is an event that's happening in May. What's that all about?


Robyn Adams32:11

diabetic Mouseketeers is a trip I organized five years ago, specifically for families with diabetes. And it can be type one, type two type one and a half, it doesn't matter. It is designed as an opportunity for families with diabetes to go and meet at the parks. It's very relaxed, very laid back. It's just a chance to play. Basically, what it gives is it gives families the opportunity to know that there are other families just like them in the parks at the same time going through the same thing they are. So a lot of the families do end up we end up meeting up most of the time throughout the same throughout every trip every now and then we do have one or two families that get caught up in doing their own thing. And I think that is absolutely wonderful. I want families to know that we're there to support them and be there and hang out with them. But I also want families to feel the freedom to be able to do what they want to do. I organized several different events so that the families do have time to meet. Once they're going to be character greets doing character meals together dining experiences together. I think this year we're going to go to the beach at the Polynesian together and watch the movie out on the beach and maybe under the stars, different things like that. Just to kind of bring that unity in that time for the kids to be together. We usually spend a lot of time at Animal Kingdom doing the Patagonia forest and the conservation station and the safari train or the safari ride just good times for the children to just relax and be together and so my favorite things is watching the children all check their blood sugar's together. Yeah, their favorite pastimes did knowing that they're not the only one.


Stacey Simms  33:58

Do the characters ever react to that? Have you ever had somebody at Disney react?


Robyn Adams34:03

I personally never have. We've just we've never had anybody say anything negative or anything. I've heard stories of it happening. Just somebody might say a or something like that. But we've never run into it. I was


Stacey Simms  34:18

actually thinking the opposite. Like one of the characters would say wow, like give the kids an Attaboy. I wasn't even thinking about the negative but thankfully we haven't run it. Oh,


Robyn Adams34:25

okay. So never, never have just, we've always kind of ducked over to the side. And you know, it's usually because usually the lows come after attractions. Right after being like, for one year, we all were going to ride the safari together. But we needed to kill a little bit of time to wait for our return time for the DA s. And so we went through the Patagonian forest together did lots of walking and everything. Then we finally went on the safari ride together and it was about 1130 and all the kids walked off and every single child except One was under 90. We all went to lunch together. That's funny. Yeah, you just kind of hear all these. I'm low. Caffeine down all the children were dropping like flies.


Stacey Simms  35:15

I'll link up the information for the the diabetic Mouseketeers event that's coming up. Before I let you go. I mean, any advice for someone who's going to Disney World with their child with type one, this holiday they haven't used you to plan. They think they're set any last minute advice.


Robyn Adams35:34

First of all, they are more than welcome to contact me directly for any last minute advice. Just because they haven't used me to plan does not mean that I am not willing to talk to anyone, and answer any of their questions and just help them. biggest piece of advice is definitely take it slow. Take it slow, enjoy it. There's going to be highs there's going to be lows, take in your low blood sugar snacks, take in the snacks that you know work for your child. If you know that Skittles are the dead ringer to bring them up fast, bring that don't bring chocolates don't bring peanut butter crackers, the chocolate will melt, the crackers will crush and juice boxes will pop and sober. So well Capri Sun pouches that comes from experience. definitely take a backpack and just pack it with everything that you feel that your child will need. Your bag will be searched at the time of entering each Park, but they're not looking for food, they're not going to worry about that at all. They're looking for other items. So just bring in everything that you need to take care of your child, we usually walk in with about three bottles of water and two bottles of Powerade. And by the end of the day, it's all gone. Yeah,


Stacey Simms  36:49

I think that's great advice. And I would just pop in and add, it is going to take you longer to get there and longer to walk around than you think. And I'm one of the people who I plan where we're going to be at 911 to eat or we're doing this, we're doing that, and we never get to everything. And that's fine. Just stop, right? Sit down, slow down, do what you can, you're not going to do at all, don't even try.


Robyn Adams37:12

You're not I know people who have been over 100 times and they still don't Wow, at all, and Disney is not going anywhere. I understand that for so many people. This is either a once in a lifetime trip or this is going to be the trip for the next 10 years. And that's perfectly fine. But the bottom line is it's not going anywhere. So whether you're not going back for six months or not going back for 20 years, it will still be there. So it's not worth trying to pack it all in. It's not physically possible.


Stacey Simms  37:40

And Mickey bars do have carb counts on them because they're packaged the Mickey ice cream. Yes,


Robyn Adams37:45

a lot of the free packets items do have the carb counts, or you're going to recognize it. Like for example, in the dining plan for the kids menu comes with a little bitty applesauce on it. Well, that's just like the little knots applesauce that you would have at home. So if you're familiar with that item, there you go.


Stacey Simms  38:04

It's like 12 carbs, that's like a lunchbox thing.


Robyn Adams38:06

Yeah, it's just like the little lunchbox size thing. So and then they've got prepackaged little things are great. You can do that. One thing that families might want to know is especially just for any reason whatsoever. When you have a children's menu, you're given adequate service, like let's say you go to cosmic rays, where you're going to get a hamburger fries, you're gonna get your main dish, you're going to get your side item, and then you're going to get a drink and a dessert, we got really tired of the desserts. And my son is just really picky. He doesn't like them. I always traded my dessert in for an extra bottle of water or an extra bag of grapes. Oh, there was a problem with it. I wouldn't do it. I wouldn't mention anything when I was at the cash register like cuz you know, when you walk up, you talk to the first person and give them your money or your dining plan information when you're placing your order. And then you walk the next 10 feet and go up to the counter. I would always mentioned to the person at the actual counter, it was much easier than for them just to swap out whatever I didn't want. Rather than trying to make the the nice lady at the cash register try to make exceptions or substitutions. That just doesn't work. But yeah, I just asked him to swap it out. And we would always have an extra bottle of water at that point.


Stacey Simms  39:25

Well, Robin Adams, thank you so much for sharing your expertise. I will definitely link up your information about the upcoming weekend in May for kids with diabetes and their families at Disney and your contact information as well so that people who have holiday season is here disease pack so they can get in touch with you and get some last minute advice about Disney and diabetes. Thanks so much for joining me.


Robyn Adams39:47

Thank you. I appreciate it.


Robyn Adams39:54

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  40:00

I'm going to link up all the information about the Memorial Day weekend, the diabetic Mouseketeers weekend that Robin plans. And she's got a really a bunch of good information on her website, not just about that, but about tips for people with diabetes at Disney, and she can book a vacation for you. She's not just about that one weekend. And she is as you would imagine an authorized Disney vacation planner, I want to take another second here and just talk about that disability path that Robin mentioned. And it's always a good idea to check up on that it does change here and there. So I will link up Disney's own explanation about that. So you can make sure you understand it before going in. And I also want to follow up on my comments about why we didn't use it with Benny, we never have. And as Robin said, you know, use it if you need it, no doubt. And the reason that we never used it, well, first of all, was my planning, which again, I will get to in just a moment tell you a little bit more about how I do it. We just never needed it. But also because this was interesting, I didn't realize this until years later, when Benny was about four I think was the first time we took him. And he'd been living with type one for two years already at that point. And the disability pass was presented to me by a very well meaning other parent, I'm sure as like a golden ticket like a prize, you know, it's bad enough that he has diabetes, at least this is one good thing that can come out of it is kind of how they said it. And he was presented as a reward. And to me that made no sense at all, you know, we had been focused on saying we're gonna raise him with, you know, the knowledge that this was a really challenging condition, but that it wouldn't stop him from doing anything. And you know, I know that we've gone back and forth about that. But I'm trying to put you in my mindset of where I was at the time because Sure, we still say you can do anything. But now we know it'll slow you down, it'll stop you. This is a good thing having this pass if you need it. But at the time, we were not looking at it that way. And we thought Why do we want to teach him that he can cut the line just because he has type 1 diabetes. And now looking back that isn't at all what that house is about. It's not about cutting the line as a reward for you know, having to use an insulin pump. It's about as Robin said, If you know your child goes high in the heat goes low in the heat, God forbid, has seizures has real problems, things like that, you know, if you know that there are going to be circumstances where this will really help you then please please, please go get it. I think sometimes it's it's a more of a hassle in some ways, you have to actually go and get it and do all this stuff. So it's not an easy thing where you just swing mine skip the line. Also, if you're doing this as a reward, and that's your personal philosophy, right? Like a diabetes stinks. This is a good thing I can get out of it. I'm not sure that I can judge you either. I mean, I'm not sure that I don't have the same mindset that I used to, you know, we all do this differently. And whatever it takes to get you through the day, you know, the only thing is obviously, we never want anybody to abuse the disability pass. That's one of the reasons why they changed it, it actually used to be a lot easier. I want to say it was maybe 10 years ago that Disney made a lot of changes to the disability pass because people were really abusing it, not people with type 1 diabetes people who didn't need it at all. So just keep that in mind. Okay, so how do I get no lines? How do I do this? Well, my secret weapon is a website called This is an amazing resource. It's the unofficial guide to Disney World, they used to have a book I mean, the first time we went, I used a book, right? Remember that you'd like read the book and mark the pages. But now it's a website and you can make a plan, you can make a physical plan with them like, these are all the rides I want to do, they will pop it into their little computer, and it will spit out here's where to start. Here's where to go. Here's what to get a fast pass for all this amazing stuff. And the other thing I do with my kids is I say, give me one thing we're going to do today, what's your one choice for today? You know, what's your one thing you want to do in this park, and then I build things around that so that we're not going to do everything we want to do is you know, that's impossible. But we know we're going to hit the one thing they really wanted to. And I plan really far out in advance. I have a friend who was going to Disney in I want to say September, October. And God she's given me hives because she's gonna wing it. And I'm looking at the calendar going, is it 190 days? Do you have your advanced dining reservations? When can you are you staying on property? So does that mean you can get your fast passes earlier? You know, you need to schedule your rides, pick your top three. And she would look at me like I had three heads if I suggested that. And you know, a lot of people just wing it and have a great time that I need to know, you know, if we're going to go on flight of passage, then I'm getting up at five or six in the morning, the day that my fast past opens, you know, 30 or 60 days before we're there. So I can book that right. So I'm not waiting in line for three hours when the day comes. Now I'm sure a lot has changed at Disney because of COVID. So definitely talk to Robin or check out touringplans I think it's something like six or $7 to get onto touringplans and get their information. And if you're spending 1000s of dollars, another six or seven bucks is not going to make a big difference in your budget, but it will make your money go so much further. They don't pay me. I'm not a affiliate of them. But interesting fact, Len testa who runs that whole thing he's been on the show before he's been on this show because he had been working in the type two diabetes sphere. With a medication algorithm to help people figure out I'm not sure this ever made it to market, but it's called glucose path. And it was all about looking at the varieties of medication people are taking, looking at their health insurance and things like that and trying to figure out what made sense for them to take in terms of what was covered. I don't remember all the fine details about it. But he is just an information guy who loves Disney. So that's how it all came together. It's a whole bunch of algorithms. And if he's applying it to other things now, including diabetes, I thought that was really interesting.


Robyn Adams45:29

Okay, we're


Stacey Simms  45:30

not done with Disney. Next week, I will be releasing an episode Fingers crossed. This goes well, because I've been scheduled to talk to him a couple of times, and it hasn't worked out, but I think we're good. The gentlemen Don Moo Chow, who ran from Disneyland to Disney World. He will be on the show next week. And I'm going to ask him a lot of questions, including Why Why did he do this? You ran he ran by foot from California to Florida. He lives with type 1 diabetes. Obviously, this is a big awareness campaign. But Holy cow. Alright, thank you so much for joining me. Thank you to my editor john pupkin is from audio editing solutions. I will see you back here next week for more Disney and until then be kind to yourself.


Benny  46:15

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


Apr 13, 2021

Let's talk about summer camp! Specifically non-diabetes sleepaway camp. We have a great roundtable to tackle a subject that can seem pretty scary but Stacey thinks is one of the best things she's ever done for her son.

Joining Stacey are  Shelby Hughes who live with type 1 and has sent her daughter with T1D to diabetes camp and regular camp, and April Blackwell, an adult with type 1. April went to Space Camp as a kid - no surprise if you remember our previous episode with her. April works in Mission Control at NASA.

Previous episode on camp here

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 Transcription (beta)

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom help make knowledge your superpower with the Dexcom G6 CGM system.


Announcer  0:23

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:29

This week, let's talk about summer camp specifically non diabetes. sleepaway camp, we have a great round table to tackle a subject that can seem pretty scary, but it's honestly one of the best things I've ever done for my son. And my guests who went themselves agree.


April Blackwell  0:46

It sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me.


Stacey Simms  1:02

That is April Blackwell, an adult who lives with type one talking about her summer camp experience. You'll also hear from Shelby Hughes. She lives with type one and sent her daughter with T1D to diabetes camp and regular camp. Plus, you'll hear from me, I've sent Benny to month long, regular sleepaway camp for many years. 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 along. I am always excited to have you here. But I this is one of my favorite topics. I love talking about camp. I think camp is so important for kids and for parents. If you're a longtime listener, you know that if you're new, Hi, I'm your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. So what's the big deal about camp, I really feel that going away from your parents, even if it's just for a couple of nights. And usually it's for at least a week, that's what we're going to focus on here is week long or longer camp programs, gives kids a gift, a gift of independence of confidence, a little bit of responsibility, diabetes or not. You learn who you are, when you're not with your home friends, your school friends and your family. You can try different things you can you know, invent different personalities, you can give yourself a nickname, I went to camp with a kid who had a completely different name at camp.

And it's a huge tradition in my family, I went to the same summer camp for a little while as my dad, if that gives you any indication, my kids didn't go there. Because we we moved that was a northeast thing. And my kids are both gone to camp, of course in the southeast where we live. But I'm such a proponent of camp. And the flip side of that is, it's so great for the parents, because you have to know who you are when your kids aren't around. I know that seems weird, especially for diabetes moms and some dads. But we get so caught up in our kids, that when you are able to turn the Dexcom share off for a week or longer. It's liberating in a way that I think is incredibly valuable. Is it scary? Oh yeah, I worry every day, especially when he's not at diabetes camp. So we'll get to it.

I do want to bring up a couple of quick points. Before we get started. I'm going to try to get a blog post out about this this week. Sometime. I'm a little behind on things. But I'm hoping to put that out because we cover a lot of issues in this Roundtable. But one thing we didn't really mention is the question of when is my kid ready to go to regular camp. This varies kid to kid various camp to camp. I think that if your child is able to check his or her own blood sugar, you know, with a meter not just looking at a CGM, because cgms can fail. And they do need to know how to check their blood sugar. If your child can administer insulin with his or her pump, if your child can change a pump, inset, and do all these things with supervision, I don't expect you know, eight 9, 10 year olds, 11 12, 13 year olds even depending on the kid to be able to do all these things perfectly. If they can do all that with some supervision, then I think you're at a good starting point. And the other question is of the camp itself. Are they willing to learn? Do you feel comfortable with the staff their medical or not, and their knowledge? You know, if you're sending a 14 year old to scout camp, you might feel comfortable that the scout leader knows how to administer glucagon and could call 911. If you're sending an eight year old, you may want to have a camp with more medical knowledge so they can recognize highs and lows and help with giving shots if needed. You know, that kind of thing. It all depends on many, many different factors. But these are important questions to ask yourself. We're going to go through with a round table I'm going to come back after with a couple of things that I think we missed that I want to make sure to mention.

But first Diabetes Connections is brought to you by Gvoke Hypopen and you know that low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar. Gvoke Hypopen  is pre mixed and ready to go with no visible needle. Before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes and click on the Gvoke logo. g evoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.


My guests this week love camp just as much as I do. Shelby Hughes lives with type one herself. Her daughter Caroline was diagnosed at age seven. She is now 11. She's the youngest of Shelby's three children. And Caroline went to diabetes camp and a regular camp and you will hear all about that. April Blackwell joins me as well. She lives with type 1 diabetes. She was diagnosed as a kid and she went to space camp and was then a counselor at Space Camp. Now you probably recognize April's name. We've talked to her before. And, gosh, I'm always all starstruck talking to her. She works at NASA. She has her dream job she says of flying the International Space Station for mission control. So she was kind enough, right that she was kind enough to come on and talk to me about camp this week, which was just absolutely amazing. So April, thank you so much for that. But I think her perspective is really valuable. And I hope you enjoy this whole conversation. So I am really pleased to welcome Shelby Hughes and April plaque. Well, we are going to talk about camp. Ladies, thank you so much for being here.


Shelby Huges  6:51

Thank you for having us.


Stacey Simms  6:53

I think we are all in agreement here that camp is cool camp is, great campus really good for kids. And for parents. So she'll be telling me about your, you know, when you decided to send your child to camp, how old she was, what kind of Camp it was, how long.


Shelby Hughes  7:08

So the first year that Caroline went to camp was before she was diagnosed diabetes. And I know it seems early, but the camp where my older two children had gone was you know, not a lengthy stay camp is about five nights, six days, and it was a church camp. But it was within, you know, reasonable driving distance from our house. And they offered a starter camp, the year that Caroline finished first grade. And it was a maybe a four night five day situation. So we sent her to that. And she had such a great experience. And so that just was on our radar like she was I just feel like camp is super important for all kids. So you know, we wanted to get her started as early as possible.


Stacey Simms  8:02

When she was then diagnosed with type one, did you hesitate sending her back.


Shelby Hughes  8:06

Now, um, I think she she was diagnosed in the middle of her second grade year. And the only hesitation was I was worried that the camp wouldn't accommodate her and would say no, she can't come we can't deal with that. So that was our only issue. And when we got in touch with the camp director, and she said no problem. You know, we'll we'll work it out. We were We were all ready to go.


Stacey Simms  8:33

Wow, that's great. All right, and we'll get into the details of what we had to we all have to do for those accommodations. And for us as parents to be able to just be able to sleep through the night ourselves when our kids are at camp. April. Tell me a little bit about your camp experience. How old were you when you went to camp? And did you have type one at the time already?


April Blackwell  8:54

Yeah, so I I have always with my nerdy persona, but I did go one summer I did a back to back space camp in California when that was still open. And the next week I went to diabetes, to very like different, you know, scenarios for a person with diabetes. And this was only about a year or so after my diagnosis. So I was still doing injections. I didn't have any basically no technology at all back in the dark ages. So I think in some ways that helps maybe because my parents weren't used to getting, you know, share data all day long. And so it sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me to take my diabetes. He's on myself.


Stacey Simms  10:01

And I'm sorry, did you say how old you were when you went to that camp?


April Blackwell  10:04

I think I was like around 12 or 13.


Stacey Simms  10:07

Okay. Did you go back to diabetes camp? Did you go back to regular camp?


April Blackwell  10:13

I, I never went back to those two camps. Actually, I did some other like church camps and stuff. But my summers just seem to get really busy. So it was hard to fit in those other camps.


Stacey Simms  10:25

Yeah, that's the tough age. When she gets to be about 14. I think there's so much going on. Right? It's hard. And our camp experience, which I've shared before is that my daughter, like you, Shelby, my daughter went to this camp, my older child is three years older than Benny, and had a great time and would come home every summer and say, I can't wait for you to go. And I'd be like, there's no way he's going. And we were very fortunate, in my opinion, because it helped me, I don't know about Benny, but he was going to diabetes camp. And he was able to go when he was seven. So he went for a week to diabetes camp. And then the next summer, he went to diabetes camp for a week, and then his regular camp for two weeks. And I say we were lucky because it got me used to the idea of him being away understanding what needed to be done, even. And we'll get into this later, even adjusting basil rates for activity and things like that. But he went for two weeks when he was eight. We did not have share yet because it wasn't even around. And he just had his deck. No Did you have a Dexcom that first year he did not have a Dexcom that first year it was fingerstick only. And then the next year he had share he had Dexcom no share. And that next year at age nine, he went for a month and he has gone for a month every year since except for COVID. And this year, the camp is going to Israel for a month. That's the age group where they go to Israel. So we are dealing with a totally different in my opinion environment. To him, it's the same thing. But that's a different episode. So that's our summer camp experience. And it has been it has not been perfect Far from it. But it has been I think one of the seminal experiences of his childhood, and is certainly influenced him in a great way and given him a lot of confidence and independence. given me a lot of sleepless nights. Alright, Shelby, let me start with you, when your daughter was was going back to camp she was they were familiar with her, they knew what were some things that you talked to them about, to kind of get things, you know, set her up for success. Was there anything that you did at the time or learned since that made it a little easier for her and for the staff.


Shelby Hughes  12:28

So um, one of the things, they did have a full time nurse, which was great. And the nurse was very willing to be trained on all things pump related and CGM related. And she at the time had the Medtronic 670 g, which automatically adjusts her basil rate, as long as she's an auto mode. So I figured that would make things a little easier than people wouldn't have to be fooling with our pump, adjusting rates and whatnot. And also, I got, the director got me in touch with the cafeteria staff with the head of the dining hall. And she was fantastic. She sent me a list of everything that they were going to be serving every meal for the entire time. So that gave me the opportunity to, you know, give them some carb counts. So they were very willing to work with me in terms of, you know, figuring out what she was going to eat and and what the carb counts were.


Stacey Simms  13:34

April, I know, it was kind of a different time, as you said, you went you say no technology, but you had shots and you had your meter, which is tech. Did anybody help you? I mean, at 12, you probably were okay. But I would always assume that there might be a little supervision or kind of over the shoulder. Are you doing all right? Do you remember how it was handled? What you did?


Right back to April answering that question. But first Diabetes Connections is brought to you by Dario. And over the years, I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Daario diabetes success plan is all about you. All the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for you on how to succeed, get the diabetes management plan that works with you and for you. Dario is published Studies demonstrate high impact clinical results, find out more go to my forward slash Diabetes Connections. Now back to April answering my question of what her camp did to kind of help keep her on track.


April Blackwell  14:49

Yes, so this is actually something I think is really great about space camp. To the point that it inspired me to become a counselor while I was in college, but they're just You know, a very, they have everything planned out and under control as you would maybe expect space camp to have. So we had if you're familiar with Star Trek, we had a sick bay. That was it was just part of the camp experience. And even though Space Camp isn't necessarily geared towards kids with health conditions, it became just a seamless part of the whole camp experience. So, you know, every before every meal, the whole group would just swing by sickbay. And anyone who needed to take meds or like me check my blood sugar, take a shot, we just go into like they Well, everyone else was playing kickball or something, you know, for a few minutes. And it, it was awesome, because it didn't make you feel singled out at all. And it was just part of the whole camp experience. So I think that's a really great feeling as a kid. And it allows you to have that moment with the nurse or doctor to have sort of a one on one conversation about any sort of dosing Delta's that you should incorporate for upcoming activities.


Stacey Simms  16:11

She'll be did your kiddo have a similar experience like that? Did they do anything?


Shelby Hughes  16:16

That was kind of the same thing. There were other kids that took meds before meals, and they would kind of divert to the nurse's clinic. And she would, I think, I don't think she would take her insulin before meals that I think that the nurse would check her blood sugar, make sure her you know, everything was good with their pump. And then after, after dinner, I think she would, she would head by there and the nurse would would help her figure out how much to put in her pump.


Stacey Simms  16:48

It was really reassuring to me, I remember starting to kind of plan this in January of the year he when when he went in, you know, July or August or whenever it was, and calling the medical people and saying how are we going to do this, you know, at eight years old, I need eyes on him to make sure that he's changing his pump site to make sure that his insulin cartridge is full, you know, trust but verify you're very independent, good kid, but still eight years old, you know, you're not gonna let him walk around camp by himself all the time doing everything. So she laughed and said, Oh, that whole cabin goes gets medication. That age, you know, and you forget that there are other kids with issues go into camp. And what we we didn't have to work it out at all. Because that cabin and not everybody, but you know, a bunch of the kids in that cabin would get in a golf cart. This is a very large camp, get on a golf cart, and go up to the infirmary, which I'm going to suggest which should be Star Trek themed as sick. But they would go to the infirmary every night. And so when he was eight, that very first year, what we decided was, he'd go up with them every night, and they would physically look at the pump, and make sure that it was an animist pump. So had a battery, no charge, but they would check the battery, they would check that it had insulin, at least for the night, that his pump site, you know, they kind of kept track was changed every three days or whatever. And it just made me feel better that they had eyes on him. And it made them feel better, as well, something we added in the next couple of years, as I realized that, frankly, they weren't on top of the site changes as much as I thought they would be because they trusted Benny, who's a very wonderful kid, but isn't going to change his instead of three days, unless somebody is reminding him, let's face it. So what we did was at meals at most camps, they have meds in the dining hall, because a lot of kids have to take medications with food, at least at our camp to have a table. So I said, Why don't you just bring the inset every three days and pretend it's like an antibiotic or an ADHD medication, like write it down. And then every three days here, let's watch you change it. And he loved it because he truly had did not have to think about it at all. And that really helped once we started incorporating it more as a regular kind of medication thing. It made a lot more sense for everybody. And it took us I don't want to say three years before we thought about one of the things that I always like to think about is I want to make it easy on the camp. And I'm curious April, if your parents I know it's kind of a different time or whatever. It wasn't that long ago. Did your parents talk to them ahead of time or try to figure out ways to make it easier on them or do any education of the staff?


April Blackwell  19:18

Yeah, definitely. I know they were in contact with the the nurses group at their at Space Camp, before we even signed up to go to camp to make sure it was something feasible because you need to get your hopes up about going into camp and then you know have to do a detour. So that was really important and also our our endocrinologists, our pediatric and it was so good with this stuff. So they had you know, these resource papers to be able to give to the nurses topics to talk about while you're there checking in how to like set up all your supplies and have backup supplies and So I, I know my parents use those resources and share those resources with the nurses. They're at Space Camp.


Stacey Simms  20:08

You know, I meant to ask, one of the things that I get asked a lot is how does your child carry supplies around camp? I'd be curious to know, April and again, I'll start with you. How did you do it? obviously different technology. Did you carry stuff everywhere you went? Did you have a central location.


April Blackwell  20:25

So the space camp in California was pretty small. So we, we had everything centrally located at the nurse's station. When I was a counselor at Space Camp in Huntsville, Alabama. It was a bigger facility. And the part that I was actually a counselor at was a little ways away from where the nurse's station was. So if we had any kids with issues that would potentially need immediate attention, we just carried like a little backpack with us and had their supplies with us all the time. Sometimes we'd be out in the woods or swimming or you know, doing some other activities. So we just like every counselor carried a little backpack and we had our own stuff, but also our our camper stuff in there, too.


Stacey Simms  21:12

Yeah, that's great. How about you Shelby? Did your daughter carry stuff?


Shelby Hughes  21:15

She did. She had a little like a little sling back, you know, backpack where she just kept water and glucose tablets. She didn't carry major things like sight changes or insulin. That was all in the nurse's station. But yeah, just just emergency things.


Stacey Simms  21:37

We sent Benny with a Camelback, you know, the kind of backpack that you have water in. And that worked out well, for a couple years. Then he was like, yeah, forget it, just taking the sling bag. He liked to have inserts. Because the pool for a while was notorious. We did find some stuff that worked. Everybody's skin is different. And this is not an endorsement and it's not a paid endorsement. But I will endorse a state put medical patches has been the only thing that works for him. And like I said, everybody's skin is different. But for a long time he carried in sets just because the pool was such a pain for him. But also, you have to have reasonable expectations. I know you all are wonderful and your children are super responsible. But Benny got Viggo. He's gonna like best camper or over silly awards, at the end in their cabin. And he got like most likely to leave your bag everywhere. And they were always bringing him his bag. You know, it's just ridiculous. But as he got older, he got better at that. And you know, you do have to have your stuff with you. And now I don't know, it seems like everybody, all these teenagers carry bags, diabetes or not. They always have stuff with them, even the guy so it's not a big deal anymore. As much as I'm interested in your experience, too, as a counselor, what kind of things do you think set a camper up for success? And listen, when I'm talking about success, I don't mean that their blood sugar is 95 the whole time they're a camp, right? You're gonna go up, you're gonna go down, you're gonna have wonky numbers. But I mean, like they're able to have a good time with minimal interruptions. They're able to leave with confidence. Is there anything that kind of goes through your mind, as I say those things? Yeah, I


April Blackwell  23:09

think preparation is key. And not just logistically the supplies and the directions for the nurse. But actually practicing being away from your parents or whoever helps you manage your diabetes for some shorter period of time. And probably very dependent on the kid too. But just maybe spending the night at grandma's house or friend's house for a night or two, and seeing how everything works and how it goes. And it's also, I think, a little preparation for the parents. Because in my experience as a counselor, you know, even though I had diabetes, and I did have a couple campers that had diabetes, as well, you know, their parents would stay in a hotel that was close to site, even though most campers flew there to go to space camp, but their parents would stay in a hotel, they would check on him every night or at some time during the day. You know, they may even give them injections or boluses. They had one who sort of like pre loaded their kid before bed with a bunch of pudding. Because they always went low overnight, which to me sounds like maybe we should change some other settings. But that's not my call to make so right. You know, as counselors, we we need to just respect the wishes of the parents I think is really important. And so, I don't know if you know, having that practice beforehand, for both both sides of it, the camper and the parents, I think is a good idea beforehand.


Stacey Simms  24:47

Yeah, man, it's gonna be hard to do nothing and then go to a week or two weeks away if your kids never been out of the house or you shouldn't say it like that if your kids never spent an overnight somewhere. That's a great bit of advice. Shelby Any thoughts? I mean, is a bunch of questions there. But, you know, kind of to set up for success. Was there anything that you've learned over those years that your daughter was at this camp?


Shelby Hughes  25:09

Um, you know, I didn't think about it. But yeah, I think having them spend the night out before you, you know, shut them off for a week or more is good. Unfortunately, we had had some opportunities for Caroline to have sleep overs preceding the camp experience, so that that was good. And they weren't perfect. But you know, I think the goal is just to stay alive. And we're good.


Stacey Simms  25:39

We have a similar sense of humor to Shelby and I. So I know, I know, you have a sense of humor to April. It's just right. I mean, you know, we hate to be blunt, but you know that that's what everybody's scared of. Right? When you're sending your child off, and they they are fine, they are fine. They are


Shelby Hughes  25:57

now looking looking at CGM data after she came back from Camp, and I was horrified to see that she was, you know, running high throughout the night, we figured out later it was they were giving her like those Lara bars, Richard 25 carbs, you know, before bed, so, of course, she was running high all night, but you know, it was fine. She she had a good time, and she was alive. And that was what that was what mattered.


Stacey Simms  26:31

And I think this is a really good time to talk about expectations. Right? And, and what what are your goals for your child with diabetes going to a regular camp, and I'll kind of take an opportunity to speak on that, you know, if your goal is going to be that your child stay in a very tight range, you're going to set yourself up for disappointment most of the time. Now, some kids are rock stars, and for whatever reason, you know, they're they're able to do this, some camps are going to help you with that. But I always tell parents, you know, camp is not the time to worry about that. Incredible a one see that you're going to run and post on social media, but you shouldn't be doing anyway. Campus, the time for your child to learn about themselves, to stretch the limits, to push to make mistakes, to to figure out who they are when they're not at home. And the flip side of that is for you to figure out who the heck you are without your kids around. It is a gift and a full month. And I'm not an endocrinologist. So ask your doctor a full month at a slightly higher time in range right or slightly, excuse me slightly lower time and range a slightly higher blood sugar average, balanced with the incredible life experience that your kid is going to get is worth it. It's not you know, we're not talking about kids running at 300 for a month, if that's happening, you need to adjust things you need to I'll talk about checking in and things like that. But I know I'm in a bit of a soapbox here. But I really believe that giving Benny the opportunity to make mistakes and to learn at camp. And you know, I'll be I'll be very open because I know people tiptoe around this. You know, his agencies throughout his whole life have been fine. Sometimes they've been great. They've been amazing. Sometimes they've been minor. But a camp has average blood sugar was usually and this is over seven or eight years, anywhere between like 150 and 200. Sometimes I think one year is he came home and it was like 220. And that's when we realized we also need to make some changes, the hormones were insane. And we need to pour like gallons of insulin on him. Some of you heard that and are calling Child Protective Services. Right? You think I'm the worst? I am the world's worst diabetes. Mom. Some of you heard that and say, Oh my God, that's doable. I can I can live with that. You've got to figure this out. Because if you think you're going to send you if you think you're going to send your child to diabetes camp, and they're going to be 83 the whole time. They're there. You are in for disappointment. All right. I'll get off the soapbox. April. I saw you nodding. I'm not a terrible parent. Right?


April Blackwell  29:07

Absolutely. And my kids aren't quite old enough to send to camp yet there are only two and five. Oh, gosh, I'm not quite to the center camp age yet. But you know, they have spent nights away at grandma and grandpa's house before so even even though they don't have diabetes, you know, the worry still creeps in and, you know, making sure there's instructions or you know, times was really important to me for my first hit. And now with a second I'm like, whatever, you know, just have fun. Like, hopefully they get a nap in there at some point. Yes. So I imagine with diabetes, it's still very, you know, maybe amped up a little bit just because there are, you know, real consequences eventually for for numbers. But, you know, I think that's important to realize and kind of pull back that You know, when you're looking at how much a kid can gain from a camp experience, you just you can't put a number, even a blood sugar number on that. So as long as they're safe and healthy, I think it's an absolutely necessary experience.


Unknown Speaker  30:17

Wow. How about you, Shelby?


Shelby Hughes  30:21

Well, I was going to talk to the fact that at diabetes camp, which she also went to that same summer, that first year she went to non diabetes camp, she probably her her blood sugar was probably a lot higher at diabetes camp, because they're, they're more, I guess, more cautious about them being too low. So she told me, they would check her blood sugar and say, Oh, you're 150 here have a snack.


Unknown Speaker  30:51

Same thing.


Shelby Hughes  30:53

And we really we joke about that now, like, she'll say, Oh, I'm at 150. I should have a snack. But I can't remember the question. What am


Stacey Simms  31:02

Oh, that's okay. Um, and I think that's a good just quickly, I think this is really good to talk about context. Right? Because 150 at diabetes camp, have a snack. Makes sense. There are dozens of kids there. They are doing lots of activities. They are trying to keep everybody safe. They probably you know, at the time, I know every campus kind of trying to keep up here. Nobody's monitoring everybody's CGM. Right, so it's totally different setup. But when you're at home, 150 have a snack is funny. Because you know, she doesn't need it. Right. The question was the balance of running a little higher and being okay with that at camp?


Shelby Hughes  31:40

Oh, absolutely. You know, I think camp is, I guess, because I went to summer camp for a month, every year when I was a kid from the time I was nine till I was 15. And it shaped who I am today, I would not be the same person. If I had not had overnight camp experience. And I see my kids friends that don't go away to camp. And now they're 18. And they're state date. Some of them struggle with going away to college. And I feel like if they've gone to summer camp, they might be doing a little bit better. So I guess that's, I'm a, I'm a huge fan of sleepaway camp, you know, no matter what. So I agree, running a little bit higher to have that life experience is definitely worth it.


Stacey Simms  32:34

One thing I want to make sure to mention, I talked about this towards the beginning of our little roundtable here, and I wanted to circle back to it was adjusting basal rates, because when your diabetes camp, you know, they'll send you home with the form of we adjusted everything. Usually they knock the kid down 10 to 15% less basil, because it's so active. But by the time diabetes camp was over, Benny usually was getting 25% less insulin because they were so active. And it's really hilly, and they do lots of swimming, and there's hiking all this stuff. So what we would do is use that as a baseline for, you know, regular camp, I loved it, because it was like a great test for that week. And then he'd go for the month, we found regular this regular camp to be even more intense than diabetes camp. So we were always adjusting. And one of the things we did we put in place in the second year and going forward was, I would check in three days after he was there. They would call me if there was anything to deal with before that, they would call me three days in. And then every Sunday, we would have a check in. And usually the check in was like I need deodorant or stamp serve is ridiculous. It was never It was almost never about diabetes. But it was a good way for me to check in and say Do we need to adjust basil? Is everything going? Okay, how our supplies looking? That kind of stuff. So I know that she'll be your daughter was at Camp a little bit less time. But did you talk to them about when to call you or checking in on anything like that?


Shelby Hughes  33:58

The first year she went, we didn't have any scheduled check ins. It was such a short period of time, but the nurse was really, really great and would text me and just say, you know, everything's looking good. She changed her site today. And, you know, just just a brief, you know, let let mom know that things are things are okay. We didn't, you know, we didn't really have the need to do any formal. Any. And there were no times that we really needed to make adjustments because the the time there was so short.


Stacey Simms  34:29

April, I want to ask you about that kind of as a counselor on the other end, because you would be the one getting the phone call. I'm not gonna ask you as you said, You've got to listen to what the parents want. So I'm not asking to make a judgment call here. But what was helpful that the parents that some parents did that you would recommend, was there anything that they did that you'd say yes, that's a good one.


April Blackwell  34:51

I think preparing beforehand and being ready to talk to the counselor. I know every camp is a little different and how we did it at base camp was each team would have two counselors. So like a morning and afternoon, evening, and having a face to face with the person who's going to be next to your kid for eight or nine hours a day or more, I think is really important. And you know, it also kind of calibrates the counselor with how serious this could be, things to watch out for, because they may not be that familiar with it. You know, when when to call the nurse, because even that may be a little bit foreign. If you're not familiar, maybe specific signs your child has for going low or going high or times to check on them. I think that face to face time is really important if you're if you're able to do it. So I know my parents did that with my counselor. When I went to space camp, I remember them sitting down and talking to her face to face. And I did it with several of my campers as well. So I think it's really important.


Stacey Simms  35:59

That is that's really good. One of the things that I also like to talk about is there are very few non negotiables for me, when I send Benny to camp or my daughter for that matter, but I do have one. And this is the kind of thing where I tell the camp upfront look, you know, things are gonna happen. diabetes can be wonky. Usually Benny can troubleshoot you don't have to call me. And like most camps, they're gonna call you for kids running a fever, or you know, anything happens. anything out of the ordinary. But my non negotiable has always been if he throws up more than once in 24 hours, they must call me because more than Lowe's overnight, which I know most people are terrified. I'm not that worried about Lowe's overnight. You know, it's it's rare that those are actually emergencies. And Benny always sleeps at camp with a, you know, a drink by his side or glucose tabs by his side, which I should have mentioned up front. This is I'm getting off topic here. But one of the best things we did for both my kids was we found these next two bunk shelves. They're like fabric shelves or you know, bunk bed shelves. There's all sorts of different kinds of just, you bring them to camping and shove them into the bed. And then they had a little shelf next to them. So when Benny goes on sleep overs, I don't even think he does anymore. He's 16. And it's a different world for him. But when he was younger, he always had a Gatorade next time it's sleep over. So if you woke up and felt weird, our rule is drink the Gatorade, then check your blood sugar. And that's not how we do it at home. It's like the 150 have a snack. I would never say drink 25 carbs before he checked your blood sugar. But at a sleepaway camp, just do it and check and we can figure it out later. And he does the same thing at camp. But I'm worried about highs, I worried about dehydration, I worried about them not really knowing if he was high, because nobody was following him on Dexcom. They looked at his blood sugar when he was younger. So I was terrified of decay and things like that. Never happened never got close. But that was my one non negotiable. And that'll be my non negotiable for this summer, too. Do you all have anything like that? April, I'll start with you. You know,


April Blackwell  38:02

I don't know that my parents ever did just because I didn't physically have any symptoms like that outside the camp. And I think that really dictated what they discussed with the nurse and the counselors there. So I know that I did carry glucose tablets, those like really gross square ones that are in like, packaging. I don't even know if they have those anymore. But I remember sticking those in my I even got special shorts for when I went to space camp that were like cargo shorts. So they had extra pockets for the Yeah, but I don't remember them saying any specific symptoms like that. To the staff there.


Stacey Simms  38:43

Did and I should have asked you this earlier. Did anybody have to supervise you? I mean, at 12? You were probably independent enough, but I'm just curious, do you remember if anybody like watched you do injections or your meter over your shoulder or anything like that?


April Blackwell  38:57

I just checked my blood sugar at the nurse's station. So the nurse or sickbay? The nurse always did. You know, look at the number I assume she you know, processed that and and thought about the injection I was giving if it made sense. But no, I don't remember anyone supervising me really close? Yeah,


Stacey Simms  39:20

I think that's just kid age, you know, appropriate different stuff. You know, I don't think anybody really watches Benny anymore. But when he was eight, the I know, they looked over his shoulder. They didn't know what they were looking for. You know, I tried to give as much education as I could. But yeah, that's


April Blackwell  39:35

a good distinction, actually. Because, you know, at Space Camp when I was a counselor, we had kids from age seven all the way to 18. And you've definitely treated each age group differently and looked for different things. And it was even a different sort of mindset for the counselors. You know, if you were a counselor for the younger age group, you usually just work with the younger age group. And it was different set of counselors that worked with older age groups. So yeah, you kind of just get you trained yourself on what seven and eight year olds need from a counselor, which is more like a mothering thing than what 17 and 18 year olds?


Stacey Simms  40:14

I mean, at that age, you're still like, are you using soap in the shower? Like, you know, there's all sorts of different things that poor counselors have to do shall be saved, you have to have a non negotiable or anything like that. Um,


Shelby Hughes  40:26

you know, it's funny, because I got, I think, kind of a set of directions from you before I sent Caroline to camp that you had, you gave me like a draft of what you had given to Ben? Oh, yeah. And so I can't remember if there was anything in there that was you know, about vomiting. Okay, so I must have had that in there. But I don't remember, particularly going over that with the nurse or with the counselor. Just because it's, it's honestly, it's not ever we've not ever had an issue. vomiting is never caused any kind of a of a problem for us. So, and back then I was still new. So I really probably wasn't even on my radar. Yeah, let now there there were no non negotiables. But now thinking back maybe there should have been fun. You know,


Stacey Simms  41:22

I think it's all a question too, of trusting the medical staff and you had already had kids go through that. So like I said, they're going to call they called me, you know, for my daughter hit her head on the side of the pool. They call you for the he's got a rash they call generally, they're going to call you for those things. And we've where I got a knock wood or something Benny's never had even large ketones maybe once or twice in 14 years, he's never had vomiting associated with dehydration or things like that. Knock on wood. We've never had that problem. But for some reason that stuck in my mind is something like, Uh huh. This is going to be the thing that happens at camp. And you know, I am I'm kind of Cavalier and I make jokes, and I worry a lot. Right? You, you can't help it, you still send them. But and I think that's just a mom thing. I mean, April, your kids are too little for camp, and they don't have diabetes. But you've got to worry a little when you send people to grandma's house. That's just mom stuff.


April Blackwell  42:21

Exactly. Yep. Absolutely.


Stacey Simms  42:23

Yeah. And mentioning the the forums, Shelby, I forgot that I did that, you know, I have these like, they're nothing. It's nothing that you can download. It's nothing formal. Shelby and I have known each other a long time. So I just sent her my stuff. But one thing that was very helpful if your endo is on board with this, we typed up kind of an action plan. And I'll look at it and make a note at the end of this episode, or in the show notes. It wasn't super detailed. It was kind of more if this, then that, like Benny will do this. And we hope you'll support with that or like really insets to the med table or go into sick beta, check your blood sugar, those kinds of things are written out. And then we had our endo sign it. Now, my endo, God love him will pretty much sign anything I give him at this point, right? I mean, it's been 14 years, he knows we're okay. I'm not going to give him anything crazy. He would tell me if he thought it was off base. But this was fantastic. Because the magic words are always my doctor says. And if the camp sees that the endo has signed off on this plan. Not only are they going to probably follow it more closely, they're going to be much more reassured. Because a medical professional has looked at it. So I found that to be I forgot all about that Shelby, thanks for bringing that up. I found that to be really good. And I did that my kids went to day camp to and Benny went to you know, regular day camp. And that was super helpful for them. And we're actually doing to get in for Israel. You know, and my endo will Cyrus endo will sign off on it. So that's pretty good.


April Blackwell  43:50

I was just gonna say I think using your endo as a resource can be really helpful because if it's a local camp, they may have other kids in the in the practice that are going or have gone and have tips for interacting with the staff there. You know, the internet is also a great place to look up some Reddit forums on certain camps and see what's going on. And, you know, there's other diabetes specific forums to ask questions about specific camps and if you are able to talk to a parent that is sent a kid to a specific camp i think that's that's worth a lot, actually. Because Yeah, inside scoop, so


Stacey Simms  44:30

definitely. And it's funny with our camp we had there were two kids who are already at that camp during the current time with type one and one of them did not want anyone else to know. He, I think that's a very tough way to go. We respected it. My daughter knew she was her age at the older group, and we respected it and nobody, you know, did anything. But I think that to me, I would be extremely uncomfortable sending my child to camp with him wanting to keep his diabetes a secret from as many people as possible, because you never know who is going to need to help. And another one of my, I would call it a non negotiable but I think a kid who's going to sleepaway camp who's got type one should know how to check his or her own blood sugar using a meter. Because things happen, even if you're Dexcom, you know, all over 24 seven, gotta know how to do your meter, got to know how to use your pump, gotta know how to change your own insets even if there's help there. And and I think you have to be a kid who's gonna raise your hand and ask for help. And that's something that you can teach. But you've also got to know your kid will do. And I see everybody nodding Shelby, was that something that you either you knew your kid would do? Or you had you thought about that?


Shelby Hughes  45:44

Well, Caroline's pretty responsible. I mean, I'm not gonna say 100% compliant, you know, she still forgets to bolus and she's, you know, she's 11 now, and she's independent at school. And still, she'll forget to balls for lunch, and, you know, whatever. But I felt like she was responsible enough to do those things. She, she, she knew how to check her blood sugar. I taught her how to change her sights. She doesn't probably her biggest issue is asking for help, because she does not want to seem different. And she doesn't want to call attention to herself. She just choose a shy kid. She does not like calling attention to herself about anything, including diabetes. But I think that if she really needed help, she would speak up.


April Blackwell  46:38

You know, I don't have a kid with diabetes myself. So it's a little bit hard for me to say, but I think it would be something great to tell the counselor when you meet with them, and just say, hey, like, they're not gonna tell you when they need help. I know, I actually experienced that myself. I remember actually, the moment we pulled up to diabetes camp and got off the bus and there was like a, everyone check their blood sugar moment, and my blood sugar was in the 40s. Just because I was like, so overwhelmed about going to camp with all these diabetics that I had never been around that many people a day. And she was like, do you feel low? And I was like, Yeah. Like, it was just, it was like, almost out of body experience. So camp itself can kind of maybe mask those, you know, symptoms or times when someone would feel comfortable speaking up, just being overwhelmed at being at camp and being excited about it could change a little bit. So it's it's something good to bring up with the counselor. I think


Stacey Simms  47:41

I do, too. We also had the counselors kind of check on him every night. And it wasn't Benny is your diabetes. Okay, what's going on? like we talked about it so that he would just say, Benny, are you okay? Like, Benny? Are you set? And what that meant was? Is your pump charged? Does your pump have insulin in it? Is your blood sugar? Like, are you feeling okay? Do you need me for anything? And so it didn't become this big conversation every night. But I still felt and I you know, again, I see you guys know, I say all the time about Benny, he's a great kid, and he's doing really well. But you know, he forgets he's staying down. He will wake up at two in the morning. Oh, my pumps, no charge, you know, things like that. So to set him up for success, we really felt like having the counselors involved, but not overly, you know, in his face about diabetes was very helpful. I don't know what really went on. This is my fantasy of what I think happened to camp I'm not sure because they tell me these things happen. But you know, Ben, he's gonna turn 25 and write his own book and it's gonna be like, nothing happened the way you thought I shouldn't say that. Like, that's terrible to put in people's


Unknown Speaker  48:42

but I do have you know, I


Stacey Simms  48:43

have my doubts that my perfect systems are executed perfectly.


Shelby Hughes  48:49

Alright, before I let you all go, is there anything you want to say any good stuff about camp anything we missed? You know, nothing, nothing earth shattering but after two years of regular camp, and two years of diabetes camp, and then of course last year, there were no pants. She was we before COVID she had made the decision that she only wanted to go to diabetes camp. I think and I and I we respected that. You know, she and I asked her why and she said I just don't like being the only one there with diabetes. So of course this summer now you know, everything's up in the air. The the one camp that we are looking at is now going to a modified sleepaway. Maybe I don't even know so I think we're just gonna skip camps all together this year, too, which is so unfortunate because she's getting to be the age where she won't want to get a camp when she's older anyway, but that's it. She just she she prefers diabetes camp now because she's not singled out. Cool.


Stacey Simms  49:57

April, any last words?


April Blackwell  50:00

I would just say one thing to watch out for is even if a camp generically allows or supports people at type 1 diabetes to come, there may be certain activities that are still restricted. I know at Space Camp, for instance, the older kids were allowed to go scuba diving in our underwater astronaut trainer. But that was not allowed if you had type 1 diabetes. So I guess, you know, think about kind of the activities that are going to happen at camp. And that's going to somehow negatively affect your your T one DS sort of mental state on that, because I think it would have for me, you know, being that singled out, not just check your blood sugar, but you can't do this activity. So be sure to think about that. And then the other thing is just, probably your kid's gonna be fine. And if they run into any problems, it's probably not even diabetes related. It's like, you know, they have a problem with this friend, or, you know, they're homesick or they're missing their dog or something. So keep that in mind that there's a lot more to kids than diabetes.


Stacey Simms  51:08

Wow. And you know, that's such a great point about the scuba, because there usually is an alternative. For big time adventure stuff. There isn't always so it's good to check. But I'll give another example. Two years ago, gosh, I can't believe how much time has gone by the big activity for Benny's age group at this camp included like this cave thing. And I don't know why it was cave swimming. I don't remember. But it was tiny spaces. And the way they described it like I wanted to, I wanted to throw up just because forget diabetes. I was so claustrophobic thinking about it. But my daughter had done it. Because she went to this camp. And we talked about it. And I was super uncomfortable. Like I let him do anything. But like holy cow, if you get stuck in a cave, like Oh, just type one. You know, they were they didn't say anything to me. I we didn't get that forward. I even asked them I asked Benny. And he was like mom, no way. I just sounds like a hassle for everybody. And he just didn't like the idea of it. So we really dodged that bullet. But there was an alternative program for any kid who didn't want to do it. Because it's it really was kind of scary sounding. And so that was great. But if you were you know, and the alternative program wasn't playing cards in the, you know, inside, it was doing another outside fun activity. But that's a great idea to check because there are there are going to sometimes be limitations, especially at camps that do not cater to people with type one who don't have all the facilities and all the knowledge. And we have to learn sometimes that there's there's going to have to be an alternative. There's going to have to be an adjustment that we in our children have to make. Does it stink? Yeah. But sometimes I think it's the price you pay for an overall wonderful life lesson and experience. Later, ladies, thank you. Thank you. Thank you so much for joining me. I really appreciate your time to share your experiences. It was so great. And I shall be I hope camp. Hope diabetes camp happens. or different things, you know, go this summer, but but keep us posted.


Shelby Hughes  52:59

All right. Thanks for having me.


Unknown Speaker  53:01

Oh my gosh, thank you all. Alright, thanks, Stacy.


Stacey Simms  53:10

Lots more to share. I'm going to talk about food, carb counting glucagon training, and share and follow at sleepaway camp. In just a moment. I want to add a couple of things to the end of this episode. But first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is about helping children become more independent. These transitional times are tricky elementary to middle middle to high school. I mean, you know what I mean? Using the Dexcom really makes a big difference. For us. It is not all about sharing follow, although that is very helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school, or for a second grader to just show their care team the number before Jim. At one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's a lot easier to spot the trends and use the technology to give your kids more independence. Find out more at Diabetes and click on the Dexcom logo.


Little bit more about camp and some tips and tricks that we learned along the way. Shelby mentioned the menu. I did this as well, I got the menu from Camp. And most camps know what they're serving every single day or they have you know, very even if they don't have a strict menu, they know the foods that they will be serving. So go ahead and ask for that. I broke it all down. I made a calendar is like a stamp that I laminated it, but let me close enough. I think they use it for the first year or two. But Benny found it was much easier to just guesstimate on carbs. I mean, he's that kind of kid. They were comfortable with him doing it. And one of the things that we started doing because honestly most camps serve very high carb foods. Think about what camp foods are going to be for kids, right you're you're serving them. food to sometimes hundreds of kids, some of these camps are very big. So it's gonna be quick and cheaper and full of carbs. So what I had him start doing was as soon as you walk into the dining hall, give yourself 25 carbs, you know, you're getting 25 carbs, and then do the rest after. And that really helped him at least get started. So he wasn't going that much higher than he would have, you know, after a big breakfast or things like that. That was very helpful. It is never going to be an exact science at these camps. Some places will have a helper. I know some parents have been very lucky. And they have a counselor who will sit or you know, a staff member who will swing by Ben, he hated that the first year, he had to show them what he was eating. And I didn't think about how difficult that would be, especially for a kid who likes to eat, and is on the bigger side. He got some blowback. And that was actually not a great decision that we made. I'm not sure I would do that again. You know, if you wanted second helpings, a lot of times he got an eyebrow raised at him. Luckily, he's a pretty confident cool kid. We talked about it, he shook it off, and he ate what he wanted to, but, but we had some blowback on that, that I had to discuss with them at at the end of the summer. We learned they learned it was it was a good experience all around. But just a heads up that those kind of things can happen.

glucagon training. This is another non negotiable. I didn't mention it. But I think this is really important. The newer glucagons, Baqsimi, Gvoke Hypopen that I talked about, make this much easier. But I did the red box training, you know, those of you who were diagnosed, gosh, it's really only a year or two that those products have been out. So those of you diagnosed two, three years ago, know what I mean, you take the red box out, and you have to teach everybody how to swirl don't shake, you know how to inject that needle. It's much easier now. But I think it's important to talk to the camp about who would who would administer that. And we decided it would not be his counselor. The counselors in the cabin are all connected to the infirmary. And somebody is on call 24 seven, so they would walkie talkie. And what we decided was if they felt felt they needed it, they would call the infirmary to come down. And they could be there in less than five minutes. I mean, it was really something that we felt good about. I think with vaccine me now and hypo Penn, whichever you choose, I would be fine with a counselor doing it. I just figured with the red box stuff. Everybody messes that up. I mean, so many studies show that most people even more trained, don't do it correctly. So I kind of stopped training people on it, which is why I legitimately Yes, it's a commercial. But I'm so glad to have alternatives. Because it's not safe not to train people on that and never had to use it. But that's another non negotiable.

And let's just talk for a minute about share and follow. Sometimes the decision is made for you on this because there's no Wi Fi or cell signal at camp. Benny's camp is in the middle, we call it the middle of the middle of nowhere. Wi Fi service is terrible cell service is pretty much non existent. Another carrier has a better luck there. You know Verizon is okay. But we have at&t that sort of thing. The first year he went to camp, he didn't even have Dexcom. As I mentioned, the next year he didn't have share. So by the time he was going back to camp for the third year, I was like, I'm not gonna use shared camp, it wasn't even a concern. It wasn't even a thought. And I get a lot of parents who look at me like I'm absolutely bananas for not sharing. So here's what I have to say about that. I actually think it's better overall, if you can let your child go to camp without the share and follow. Now, you've got to talk to the counselors about the beeping, you know, Benny had his receiver, always next to him in bed. And what that means if he's beeping overnight, right, if he's low, and it's urgent, low goes off, they've got to make sure he's okay. But they're in a cabin together. They don't need to remote monitor him. They're in the same room with him. So they're gonna hear that beeping. So I always felt okay about that.

And then we use the T slim pump. So the CGM is right on the pump. So you don't need the receiver anymore. But I did a talk about camp earlier this year. And I had a mom and I didn't I don't think about this, because we don't use Omnipod. She said, I have to use the phone. We don't have a receiver. Our camp has a policy, no screens, no screens, even a phone is a screen. So I immediately was thinking how is she going to do this. And I think I would rather have my child who is used to using Dexcom. Use the technology, you don't have to take the Dexcom away, right. So use the phone as the receiver because the Bluetooth will still work, haven't put it on airplane mode or whatever. But the Bluetooth will still work in the phone, the alarms will still go off, talk to the camp about, hey, she's not playing games, they're not taking photos, make sure your kid is following the rules. If you don't have a receiver, and the phone is all you've got, I think that that is better and more realistic than expecting a child who's used a Dexcom either since day one, or for a couple of years to go back to finger sticks. You're just not going to get the results that you want. I mean, let's be real. As I said in that commercial, I just said you know you're not going to do the middle schoolers not going to do the finger sticks if they've got the Dexcom Why would they do So those kind of accommodations can really help.

But in terms of the parents following along, here's the question, if the camp lets you do this, and you think it's vitally important, you guys have to set up a plan with camp. If it's 2am, and the low alarm goes off, Who are you calling? What are you doing? Right? Who are you alerting, they already know, they're already on it. And if you want to double check, pay, that's your prerogative as a parent, if the camp agrees to it. You just have to have a plan. I would not know who to call, I guess I would call the infirmary. And I couldn't call the cabin, you have to kind of figure out those things. And I know we're getting really long. But just one more quick thing.

I have seen this happen at our local diabetes camp. If your child uses non FDA approved technology, you nightscout folks know what I'm talking about you openaps people, I see you out there, you have to have a conversation with the diabetes camp, about whether they will be allowed to use it. Now, this is years old of this conversation. So most diabetes camps have settled it. I talked to a mom who loops with Omni pod, which is not FDA approved right now about what to disclose to her regular summer camp. Isn't that an interesting question? It's not FDA approved. But she's sending them there with the loop. Because it's better, she gets better control, then the Omnipod by itself. So, you know, my advice was to kind of explain it to them, you'd have to go into all the details about you know, big red flashing light, this is FDA, this is not FDA approved, blah, blah, blah. But I thought that was a really interesting question. Maybe we'll put that in our survey this week. Or I'll ask in the Facebook group, you know, how much do you disclose to people who don't really understand and don't need to really understand, you know, she she needs to know that if the Reilly link craps out or gets wet, you know, that kind of thing at camp, she has to have a plan B. And I think that's fine. But man, you know, the Do It Yourself crowd is fantastic. You know, I love you. But when you've got people who have liability issues because they're taking care of your kids, I'd be interested in hearing some of those stories and how you've done it and maneuvered and made everybody comfortable. Okay, well, thanks for sticking around.

thank you as always to my editor John Bukenas from  audio editing solutions. Thank you for listening. We've got a classic episode coming up in just a couple of days. Advice for taking diabetes, to Disney to Disney World and Disneyland because those vacations are unlike many others, and they're very expensive. So how do you do it? We'll talk about it. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.


Announcer 1:02:42

Diabetes Connections is a production of Stacey Simms Media.


Benny  1:02:46

All Rights Reserved all wrongs avenged.


Apr 8, 2021

We can't wait to travel again! Looking back on this episode really makes you want to hit the road. Jeremy Larsen is an American currently living in Japan but he's traveled the world.

Jeremy started the 70-130 project (the “perfect” blood sugar range) to show that type 1 diabetes shouldn’t hold anyone back from travel. In 2017 he came back to the states to do a national parks trip and now he blogs and posts videos over at T1D Wanderer.

This interview with Jeremy took place in October 2015.

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 Transcription

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know? stuff.


Announcer  0:13

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:19

Welcome to a classic episode of Diabetes Connections. I'll be so glad to have you along, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are a chance to revisit episodes that aired in the first and second year of the podcast, when frankly, we didn't have quite as many listeners. And it's always fun to go back and check in with these folks.

I spoke to Jeremy Larsen, back in 2015, he has traveled the world and he is currently living in Japan as he was when I first spoke to him. He started a project that he called 7130, the perfect quote unquote, blood sugar range to show that type 1 diabetes shouldn't hold anybody back from travel. Jeremy was diagnosed with type one when he was nine years old. And he says he got the travel bug from his parents and he's from America. He's an American citizen living abroad. And he says he spent a lot of his childhood seeing the US from the back of the family car. He has been all over the world. And you can see from his many, many videos, where he usually shows his blood sugar talks about his management, he's far from a perfect guy. That's not the point. He says, as you'll hear, it's more just about getting out there and living well. With type one little bit more on Jeremy is doing these days. I'll catch up in just a moment.

But first, this episode of Diabetes Connections is brought to you by insight the breakthrough, a new history of science podcast created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. The latest episode features the question does snake oil actually contain snakes, it's a look into how this phrase snake oil came to be. And it was kind of surprising. It's a little gross. But it's also very interesting. I got a sneak peek of this show at the beginning of the year. I love it. I've subscribed to it. I listened to every episode. They're all terrific circuitry inside the breakthrough wherever you found this podcast. And if you're listening through the website or on social media, there is a link to inside the breakthrough at Diabetes And this podcast, as you know is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

When I reached out to Jeremy Larsen back in 2015, he was because I was just really intrigued by his Twitter feed. He was traveling all over the place. And he was always showing his blood sugar. And he had interesting stories about everything that you would we would expect, right finding insulin language barriers. We talked about that a little bit, you know, talking about what sang type 1 diabetes in different languages. He was just as fascinating to talk to him as I had hoped. And we actually connected again a couple of years later, he did a huge road trip across the USA in 2017. Going to different national parks. I think he talks about that in this interview that he was planning that and when I caught up to him recently, he said hey, I'm actually still in Osaka, Japan still teaching although we're watching the Coronavirus numbers with concerning the canceled big Amtrak travel plans last year he has been biking to and from work every single day. And he has a big YouTube channel. So I will link to that now as well. So you can check out what he's been up to.

One more quick thing I need to let you know, my intro to this interview. Initially, the beginning of my talking had a lot of music under it. I did things a little differently back in 2015. So it'll be really weird. If I play that now. It'll sound odd. So I will just set it up to tell you that at this point. Jeremy is talking to me from Japan. I am in North Carolina. And I'm starting out by mentioning the time zones here. I thank him for joining me today. Or maybe it's tonight.


Jeremy Larsen  3:57

Tonight, my time early morning, your time.


Stacey Simms  4:00

Let's start. When you were diagnosed, you were a kid you were living in the United States. You grew up in the southeast. How old were you when you were diagnosed?


Jeremy Larsen  4:10

I was nine. And I was living in Augusta, Georgia. I don't remember a lot about it, except that my parents say I was laying around on the couch a lot and had no energy and all that kind of stuff. drinking a lot of water going to the bathroom a lot. I think it was the lack of energy that really, really concerned them. And as I recall it, and I was only nine I'm not sure how accurate This is. But I recalled that they took me to the hospital on December 24. I know it was December 19 just a few days before Christmas. And I don't remember exactly what happened. But remember somebody probably my dad saying that you might have diabetes. And I had heard that word. I knew it was something but I didn't really know what it was right. So I was in the hospital for several days, you know, and of course it was diabetes. And I remember them saying The doctors were real good, never saying they weren't sure I was going to get out for Christmas morning. But they were trying to do that. And I didn't really care. I just wanted to get better. And finally, they let me get out on December 24. So I actually went home and had some kind of Christmas morning the next morning. So that's kind of all I remember, I remember a few things from the hospital, but it was just basically pretty, probably the pretty standard story from back then.


Stacey Simms  5:28

Yeah, when you're nine years old, you kind of just want to get back to your, your friends. And if you play sports, and just doing what you want to do.


Jeremy Larsen  5:36

I remember some of my friends at school had given like, Christmas presents to each other, and somebody had given me a box and I had like a giant candy cane in it. And I was kind of looking forward to getting back to that. And my parents had thrown it out about that.


Stacey Simms  5:51

Do you remember kind of life changing quite a bit? Or did your parents treat this as Okay, we're just going to go on, as we did before with diabetes?


Jeremy Larsen  5:59

No, that's exactly how it was. They just, they were really great. They were obviously very concerned and everything, but um, they kind of presented a just Well, that's how it is kind of face to me. And that's just how it was. I don't really remember a difference. I don't remember what life was like before it. You know,


Stacey Simms  6:18

we're going to talk a lot about travel today. Did you have that bug as a kid? Did you travel with your parents a lot?


Jeremy Larsen  6:24

Yeah, that's where it started. I don't I wouldn't say I had the bug. But we lived. I grew up in Nashville. Actually, I just moved to Augusta when all this happened. But when I lived in Nashville, Tennessee, and when I got when I lived in Augusta, we would take these long car trips once or twice a year down to Sarasota, Florida. And you know, especially from Nashville, that's whatever it is 12 or 14 hours, we do it one straight shot. So it was me and my sister and my parents, and we would just spend me and my sister in the backseat playing games and looking at license plates and all that kind of fun stuff. And we just got used to sitting for long periods of time and watching the world go by and we drove all around. We drove around the Mississippi once and just long, long car trips. I think that's where it started.


Stacey Simms  7:10

It's funny, you mentioned the license plate game and things like that, because I travel a lot with my kids who drive with the car, but they've got their movies in their iPads and they don't. I hope they look out the window sometimes.


Jeremy Larsen  7:19

I don't think they do. I still play the license plate game when I'm driving around America.


Jeremy Larsen  7:25

But you don't know,


Jeremy Larsen  7:26



Stacey Simms  7:28

But you don't live in America anymore. How did you get to Japan?


Jeremy Larsen  7:32

Well, I had only I was still living in America. And I'd only left. The United States once now was for a month in Scandinavia. And that was a lot of fun just backpacking around, you know,


Stacey Simms  7:42

did you go by yourself?


Jeremy Larsen  7:43

Were you with friends? Yeah, by myself. Yeah. And that was just just kind of learning how to travel, how to be outside the US and how to find trains and how to find accommodation and stuff. And it was a lot of fun. But then I was back in the US. And I was working in Augusta, actually in Aiken, South Carolina. And I started I don't know what the thing what made me do this. But I started realizing I can I could not even not only travel overseas, I could live overseas somewhere. And I thought, well, how would I do that? So I started looking at websites and stuff. And I found that you could teach English. And you didn't really need any special qualifications depending on the country. There's a lot of different countries you could do it in. So I decided to go to Chile, because I was pretty good at Spanish in high school in college. And I still remembered most of it. So that I go to Chile, I'll be a teacher. And it turns out you had to have a teaching certificate or some kind of degree or something for GLA Chilean government's rules. So looked around. And then I kind of settled on either Japan or Korea because they had a good reputation for having a lot of jobs. And you didn't need special qualifications. And the salaries were pretty good even for introductions, introductory teachers. And then Korea kind of had a bad reputation. I don't want to smear Korea because I don't actually know they had a bad reputation for some of the schools didn't pay on time or wouldn't pay in Japan had no such reputation. Everybody thought Japan was pretty good. So. So I actually, I applied through a website to one of the big companies here in Japan and they flew I flew up to Toronto to have a an interview. And they hired me and a few months later, I came to Osaka for one year. My plan was one year, maybe two and that ended up being four years. And then I left Japan after four years went traveling a little bit and then I came back to Japan. I've been here another four years. That's where I am now.


Stacey Simms  9:40

What do you like about it? I mean, did you enjoy teaching or do you just like being in Japan?


Jeremy Larsen  9:44

My mother always told me that I should be a teacher and I always thought she was crazy because I never did anything like that. Like I was in I worked in newspapers I worked in like graphics and stuff like that. And just because that's what you do if you want to move here I started teaching English and it turns out I do I get it's, it's not really why I'm staying here. But it is fun. It's very, it's like, you know, most people have desk jobs where they just sit around and they're on a computer all day. But my job was just talking to people. And it's really a lot of fun for that. So the reason I stayed was kind of, it's just, to me, it's like traveling every day a little bit. Because as I don't read Japanese that well, I don't I'm not actually that good in Japanese, despite my time here. So whenever time every time I like walk down the street here, everything's kind of weird and new to me, still, it's still that way. And that's what I like about like a little sense of, I don't quite know what's going on. So I have to fight to you know, make my own way here. And I'm kind of used to it but still, it's it's an odd place to be. It's the people like me who thrive here are generally people who are probably more loners, or they probably, they just enjoy, they enjoy the challenge of trying to figure things out.


Stacey Simms  11:00

It must be just so fascinating, as you say, to feel like you're traveling every day. But we haven't really mentioned type 1 diabetes. Tell me a little bit about how you do it. Especially let's let's back way up. Tell me about your first trip that month of backpacking. It seems like this is second nature to you now, how did you prepare? And what do you do when you travel?


Jeremy Larsen  11:22

Um, it's kind of funny when I look back on my life, like because I was diagnosed at nine when I think of, you know, the rest of elementary school and junior high school high school, I don't really remember diabetes, like in high school, I don't remember if I took shots to school and took them or if I just took regular in the morning, I don't know what it was. Because I just had like a regular life. And I always, almost always tried to maintain diabetes, but I didn't really it wasn't like a huge, huge, huge thing. It was just something to deal with. You know, when I was in Scandinavia, all I really remember is that I had my glucose machine. And I was on human log and probably NPH. Yeah, human organ NPH at that time, and it was insulin pen with replaceable cartridges. That's what I was using. And I just, it was only a month. So I knew exactly how much I knew about how much I would need. And I made sure the doctor gave me probably two or three times that amount just to be careful, you know, right. And I kept it in a cooler pack, and just carried it around with me. I remember I carried a an empty Coke, coke bottle like an empty plastic bottle. And I would put my used strips and needles in it. Just carry them around month. And it got like all this bloody water and stuff. I remember crossing over from Sweden and Norway by train and some lady came by to check passports and stuff. And she saw that she just looked at it and didn't seem to care. Put it back in my bag. Sorry. But that's got to be the most suspicious thing she's seen all day. Exactly. As long as you have enough supplies, and all I have is insulin and blood sugar machine and strips. Just make sure I have enough I keep them in a couple different places like two different bags in case something happens to one. So it's not ever been in problem. Really.


Stacey Simms  13:09

You know, it's interesting to hear you speak about it. Because you're very low key about this. Obviously, you're taking care of yourself. You're doing what you need to do. But this I like that you don't remember what you did in high school to me that shows Hey, it's just life. We're getting through it. I mean, I don't remember all the stuff I did in high school. I don't have diabetes, it's just the way it seems to go for you. Is that attitude? You think something that is important as you live now in Japan?


Jeremy Larsen  13:31

Yeah, I think so. Again, it never really comes up here. Actually, the real I don't exactly know why. But I think one of the reasons and I don't know how cool of a story this is, but it is true. When I was in the hospital, and when I first got diagnosed, I remember you know, it's kind of a heavy atmosphere, like you've got diabetes a little bit. And I remember the doctors saying a couple times, well, you have diabetes, and that's not good. But the kid in the next room, he's got leukemia. Oh, geez. And another word I had heard that I didn't know what it was. And they explained that's much, much, much worse, you know? And I kind of think maybe because I eventually learned what leukemia was. And I kind of think maybe that's what gave me my outlook on diabetes. Like it could be much, much worse.


Stacey Simms  14:18

I think it's fascinating. You know, I'd love to talk to more people about their first impressions because I think it's very important. I don't doubt that that did affect you. When we were in the hospital with my son. There was a nurse who came by she wasn't our nurse. My son was not yet two years old when he was diagnosed, and we didn't know we were doing well. But what is this what's gonna happen? And she came in and she has type one, she was pregnant with her second child. And she said, I just wanted to come in and tell you everything's gonna be great. life's gonna be good. They told me I couldn't have kids. Here I am with my second. Don't baby Your son, get out of the hospital have a great life. You know, see you later. And it affected us to the point where we thought Oh, great. Look at that. I think if we had let ourselves kind of wallow in the world. mean nothing's going to be good ever again, it would have changed. But this great nurse came by and said, Dad, come on, it's gonna be okay. It really


Jeremy Larsen  15:06

a lot of people do follow it and they don't have anybody like that. And I think that sets them on a bad course this isn't a bad attitude. You know,


Stacey Simms  15:13

I think we were extremely lucky. So, Jeremy, now that you have traveled and you have traveled extensively, you started at really interesting project that I want to talk about. And that is how I saw you on on Twitter, this is your your Twitter handle and tell me about 7130. What is this all about?


Jeremy Larsen  15:36

7130 rows, really, because those are the numbers that the American Diabetes Association recommends for pre meal blood sugars,


Jeremy Larsen  15:47

right, that's the


Jeremy Larsen  15:48

best range, the best range for generally speaking, I think 70 is a little bit low for me personally, but that's what they say. So it's got a good ring to it. 7130. What happened is I knew another diabetic type one diabetic, and he didn't take care of his, I guess he took insulin a little bit, but he didn't. Like he got sick one night, like he felt really bad. And he called his father who is a physician. And he said, I feel really bad. And his father said, Well, can you check your blood sugar? And he said, No, I don't have any I don't own a machine. And I heard this story. And I mean, whatever that story is worked out. Alright. But I thought, and he's had a couple surgeries for like, diabetic retinopathy and stuff like that. Wow. I thought why do people do that? Why do people just not accept it like it life is so much better, if you take a few seconds, every, every few hours, whatever it is, check your blood sugar and try to get it right, you know, it's gonna be real high and low sometimes, but just try to try to learn more, you know, the the psychological barrier that some people have not being able to face, it is very unhelpful, and what 7130 is really to me, for one thing, it's way for me to brag about the traveling, I do, and I like that. And I like blogging and stuff, but um, it's a way to show people that you can go anywhere, diabetes doesn't have to hold you back. And if you watch your blood sugar, and really like, you know, accept diabetes, except that you have diabetes, and that's just how it is. And it's not that big a deal. It's not that hard. It doesn't always make sense. But it's a pretty simple process to take care of it. If you do that, you're more likely to do fun things, you're more likely to whatever your thing is, if it's traveling or if it's getting a certain kind of job or living in a certain place, or whatever it is you want to do sports or something like that. So it's really all about checking. I know a lot of people are, are knowing your blood sugar and maintaining, I know a lot of people are aching to find a cure, they just want to cure like I'm fighting to find a cure. And I like the work that people do, especially the jdrf. Like they all do really good work. But I think psychologically, I'm not so worried about a cure. If it comes, that's great. But there isn't one now so I have to deal with it now.


Stacey Simms  17:58

And this 7130 project is a video project a picture project to where you're basically taking pictures of yourself in your meter, whatever the number is, and sharing them what's what is the reaction been? I love the videos. I think they're they're really fun. And a lot of times, almost all the time you have a pretty good number, do you I shouldn't get ahead of myself here. But do you wait till you have a good number to stick it in the video?


Jeremy Larsen  18:23

It depends on which one it is there's different things. There's one I did called Osaka A to Z. The point of that one was I made a list of 26 places around Osaka This is while I was living here working so I couldn't be traveling. I was kind of stuck here. So I made a list of 26 places around Osaka from A to Z and I went to each one I took a picture of my blood sugar machine. And those I did do some cheating on if my blood sugar wasn't good. I would I would drink juice or take some insulin and wait a little bit or I just pull up a fake number. You would not? I would Yes. Because the point was the finished product. So I had like all these I think yes 26 places and I think they were all between 7130 that was the point right? After I did that I thought that what happened was the feedback I got from people people said they liked it and found it inspiring that I was getting out to these places and stuff. But people were saying how's your blood sugar always perfect like that. And I kind of realized was kind of annoying because it's not even true. So the next one or one of the reasons I did was when I was in Europe for four months, I just said well whatever it is, this is what it is. And I'm gonna go to the top of this hill in Budapest and take a video or picture and whatever it is when I get there that's the blood sugar but I'm still here and I'm trying to do my best with with my insulin and my food and exercise and everything and if it doesn't work, it doesn't work but I'm still here anyway.


Stacey Simms  19:46

I like those better because it's go right


Jeremy Larsen  19:49

just go right.


Jeremy Larsen  19:51

You can you can stay at home and have a blood sugar this 350 or you can be traveling through the Czech Republic now which is better.


Stacey Simms  19:58

What has surprised you With about traveling with diabetes and and living in Japan with diabetes, anything really surprised you?


Jeremy Larsen  20:05

While living here, the big difference between living here is how easy the healthcare system is. It's nothing like it is in America. And I remember we know when I was in America had insurance through my employer and all that, and the deductible and which doctor you can see and all that kind of stuff. None of that exists here. I pay monthly into the nationalized health surface health system, and I can go to any doctor, or they can write me a prescription, I can go to any pharmacy, everything's really like, the prices are all set. doctor visits are really cheap. And the insulin cost about the same as what it does in America. But it's just no worry. There's no health insurance worry.


Stacey Simms  20:43

It's fascinating, isn't it all the same supplies? I do have access to everything that you would have used in America.


Jeremy Larsen  20:49

Actually, somebody asked me today on Twitter, what kind of Insulet What kinds of insulin are popular here? And I didn't really know what to say cuz I only know what I use, which is human log and Lantus. Now, and those are actually manufactured for the Japanese market here, like my pins actually have are written in Japanese on the side. Oh, they're very, I mean, yeah, even if I go to a doctor, and then like a brand new doctor, and then they write a prescription and I go to the pharmacy next door, the pharmacy will probably have humalog and Lantus in the refrigerator there. And if not, they can get it within probably 1824 hours.


Stacey Simms  21:25

Have you ever been in a situation that you're traveling kind of led you to a difficult situation with diabetes, you have to forgotten a bag someplace?


Jeremy Larsen  21:37

Well, nothing like that nothing where I was just out of supplies and couldn't find any, because I'm so paranoid about it, that I always make sure something's gonna happen. I've like my longest trip so far was about 303 130, some days, but 11 months in Southeast Asia. And I took enough insulin with me for about maybe two or three months, so I had to buy it several times while I was on the road. And in those countries, like I was in, I ran out in Thailand. And I was in a small town in southern Thailand. And I thought, well, what am I going to do? And I went to the local like the prefecture or hospital, or whatever it was, and I talked to this doctor who spoke English for some reason. And she said, I said, I need a human log, just so you can't get human log here. You can get it. There's a private hospital over on the other edge of town, but it's whatever, like expensive was like $40, a pen or something like that for some reason. And I was really budget traveling, and I didn't have $40 for a pen. So she said, Well, you can buy this stuff called act rapid here. I said, What is it? She's Well, it's fast acting, it's probably good enough. And I said, Well, how much is it and she told me it was like dirt, dirt, dirt cheap. But it's a real kind of insulin. So I bought a bunch. And it was really cheap. And it was kind of a test. I said, if this works, okay, and if it doesn't work, I have to go home, back to Japan or something because I won't be able to continue this. I mean, if I can't find the insulin I need the trip is finished. And I have no problem with that. Because diabetes is priority number one. But it worked fine. And so I got lucky. So I had bought a bunch and I was good for another three or four months or something. And then I was in Cambodia. And I went to I was in the capital of Cambodia, Phnom Penh. And I needed some more insulin. And I knew in that region x rapid was most common. So I went to this pharmacy, I think it was like on August 31. Because they had pins, they had x rapid pins in the in the refrigerator, and to two boxes of five pins of 10 pins. So that's good for about three months or something. And I said, Great, I'll take them. And they said, Oh, and then I noticed the expiration date was that day, oh, these are expiring today. So I was kind of thinking he would go and go into the back and get some others, you know, right. And he me guy kind of looked at me. And he kind of lowered his voice and said, Would you take these for half price? And I said absolutely, I would. Again, it was just, I'll try it, you know, and those worked fine for the next three months. And just things like that. I've always, if I can't find what I need, I would cancel a trip. But that's only that's the closest it's come to happening. And that wasn't really a big problem. So I've been lucky or I just been careful.


Stacey Simms  24:26

I probably a little bit of both. I would think too. I mean, you know if you're packing that well, as you're traveling, and I think we also forget, diabetes is not an American experience. You can get flies around the world.


Jeremy Larsen  24:38

Right, right. Yeah, when I was crossing over from Cambodia and Vietnam, it was this strange little outpost of a border crossing and not many people used it and they were looking through my bags and stuff and they found a bunch of syringes and pens and stuff. And so what's all this and they didn't speak any English and I didn't speak any Vietnamese and it was kind of they were kind but they're they're friendly about it but there was obviously they weren't gonna let me through And finally I remembered I had a phrase book and I got it out and the word diabetes was in the phrase book. So I showed it to them showed him the Vietnamese version. And they all started like smiling going, Oh, okay. Okay. Okay. And they said, Well, you know, zipped up my bag and told me they told me to go ahead. Wow. So even even they were very, very suspicious. But as soon as they learned it was diabetes, they're like, fine, fine, fine. Go ahead.


Stacey Simms  25:22

That's great. Probably a better reaction to get from the TSA sometimes in this country.


Jeremy Larsen  25:27

But yes, hey, so


Stacey Simms  25:28

how I put you on the spot here. How do you say diabetes in Japanese?


Jeremy Larsen  25:33

diabetes is Tonio Bo, which means, I think it means urine sugar sickness. That's what they call it. Tonio Gill,


Stacey Simms  25:43

what's your advice for people who are worried about travel?


Jeremy Larsen  25:48

My advice is that almost all of the problems in the worry are psychological. And it has nothing to do with diabetes. I actually actually think to get a little philosophical about it for a second, I think diabetes is mostly a psychological condition. I mean, obviously, what it is, is an imbalance of sugar and glucose and insulin, yeah, take care of that, because you don't make your own insulin. But that's fairly simple. It doesn't always make sense. And like I checked my budget earlier today, and it was 360. I had no idea it was that I have no idea why. But it just happens. Like physically, it's easy to take care of, basically, you know, just balancing those two things, but all of the psychological worry, that's what takes a bigger toll. In some ways. Obviously, there are physical tools. But so when people are worried about doing anything, I understand the worry, because you're going to go to a strange place. You don't know what the food is, you don't know. Is there going to be like a refrigerator from insulin? Is there going to be what if I break my insulin pin? What How can I go to a clinic and buy a new one has all that work, but what I've found is that people will always help and there's no problem, there's not going to be any problems. People like health care as the same everywhere, no matter it might be good or bad quality, but the people behind it are the same everywhere. They want to help. And if they realize that you are if you can communicate somehow that you're diabetic, and you need this, you need that, they'll do something, something will work, you know. So I'd say just go, just don't worry about it. But you have to plan to make sure you have enough insulin and stuff if you don't feel like buying it overseas, but there's not much to really worry about. It's all in your head. That's kind of basically my advice. Diabetes is the same when you're in a little guesthouse in the middle of Laos, as it is when you're home, you still have to make sure that you had enough food and enough insulin and you have to check if you don't know and it doesn't really change when you're on the road.


Stacey Simms  27:39

What's next for you? You're in Japan right now. Are you planning any big trips are you going to stay there another four years,


Jeremy Larsen  27:46

not another four years.


Jeremy Larsen  27:49

Going back to Aiken


Jeremy Larsen  27:50

back to Aiken


Jeremy Larsen  27:53

would be an interesting change, I'd


Jeremy Larsen  27:54

love to visit Aiken. I don't know if I'm looking to move back to a


Stacey Simms  27:58

small town in South Carolina. I


Jeremy Larsen  28:00

should mention.


Jeremy Larsen  28:01

I just finished up a four month trip to Europe, which was a lot of fun kind of eastern and southern Central Europe. And then I was actually in the states for a couple months. And then I just came back here in April. So I'm kind of here. refilling my coffers. And teaching classes, you know, saving the next trip, which will probably I hope would start about a year from now. But I don't know Don't hold me to that. I would like to rent a car and just drive around the US for two or three months going to see the national parks.


Stacey Simms  28:33

Wouldn't that be great.


Jeremy Larsen  28:34

And I've seen some of them. And I've taken a few car trips across America with friends of mine, but I've missed a lot of like I saw the Grand Canyon, but I didn't see a lot of the great national parks Yosemite, I haven't seen Yellowstone, I haven't seen things like that. So I have a big list and have a big excel sheet with all of them. That would kind of be my next trip.


Stacey Simms  28:55

That sounds terrific. We did a small trip like that two years ago to the Grand Canyon and Bryce Canyon and Zion. And, um, we were really nervous about diabetes. And it worked out so well. And my takeaway from it has always been my son. We went on a mule ride on you know, we were we were all on the mules on in Bryce Canyon. And he was I want to say, seven or eight years old at the time. And I remember thinking, Okay, we're going to be in this mule for two to three hours. You know, what are we going to do? Go and logo and Hi, we weren't remote monitoring at the time. He wasn't even wearing a CGM. It worked out so well. We didn't worry about diabetes. We had a blast and the pictures from that trip. Were just incredible. And it was so much fun. So I love that idea of just realize that diabetes is the same whether you're in your house or you're on a mule in Bryce Canyon. It really is.


Jeremy Larsen  29:48

It's right.


Stacey Simms  29:49

Well, definitely keep in touch. This was really interesting. I'd love to talk to you again, especially if you wind up doing a trip to the States. That'd be great.


Jeremy Larsen  29:55

Yeah. Okay.


Stacey Simms  29:56

Gary, thank you so much for joining me.


Jeremy Larsen  29:58

Thank you very much. I enjoyed


Jeremy Larsen  30:05

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  30:11

Lots more information about Jeremy Larsen. You got to watch his YouTube channel. I didn't set up at Diabetes, Connections com. He also let me know that he's got a lot of videos from that park trip. He's in the process of uploading a lot of that stuff to YouTube. Apparently he's redone a lot of his social media and as many of us have since 2015. So that's getting uploaded. So please go ahead and check that out. And he said he has a few things up his sleeve for the next couple of months or years, you know, after Coronavirus passes in Japan, which if you go just as an aside, if you go to his website, and I watched a couple of the videos, it's been really interesting to see how Japan has handled Coronavirus.

You know, of course, they have had far fewer cases in the US they handled the virus itself differently in terms of better masking and that kind of thing. But they have been slower on the vaccines. And Jeremy talks about the Japanese culture and kind of why that is they're really just getting the vaccines rolling out now several months after the US. It's just so interesting to get that perspective. Right. I mean, travel is the greatest thing you just learned so much. You opened your mind. I can't wait to travel.

Alright, thank you so much for joining me a couple of really fun and interesting episodes coming up if I do say so myself. I'm not exactly sure which one I'm going to go with next week. Because as I'm speaking to you now, schedule is a bit up in the air but here's what's coming up. I have a roundtable on sleepaway camp. This is non diabetes sleepaway camp. So we're going to talk to two adults who went to this kind of Camp when they were kids to adults with type one and two parents. I'm one of the parents who have children with type one that they have sent to regular sleepaway camp and kind of how to do it and what you can expect that kind of thing. And we're also talking to the man who just set a record a brand new Feat. He ran from Disney to Disney. He ran from Disney Land in California to Disney World in Florida. I am still working out the logistics, but Don promised me months ago that we would talk so I'm hoping that will be the episode for next week. But that's really up to him and boy, if anybody deserves a rest and we can hop, it's him.

Alright, thank you, as always to my editor John Bukenas fom audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.


Benny  32:29

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

Apr 6, 2021

Moira McCarthy and Stacey are back to answer your D-parenting questions! This time around, they're talking about a dad who’s a first responder and sees the emergency side of diabetes, advice for young adults with T1D getting their first jobs and questions about teens with diabetes traveling abroad.

In our Innovations segment – a new glucagon and previous guest Bob Weisher launches his Invincible Kids app for teens.

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

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

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom, keeping you in control with an integrated system for diabetes management.


Announcer  0:22

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:28

This week, ask the D moms is back! Moira McCarthy joins me to answer your questions, including one about sending a teenwith type one on an international trip for a month


Moira McCarthy  0:41

You can’t go from constantly overseeing it for years and years and years to bang letting them go on something like this. And that's why you've got to kind of poke at it. And it's not as much for them as it is for us for parents because we have to get past our own eggs. And that's how you do it.


Stacey Simms  1:00

We also talk about a dad who's a first responder and sees the emergency side of diabetes advice for young adults getting their first jobs, and Moira shares a story that stopped her in her tracks, even after 24 years of her daughter's diabetes.

In our innovation segment, a new glucagon option and former guest invincible kids takes a big step forward. 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, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with type one more than 14 years ago as a toddler. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast.

If you are a careful, longtime listener, you have probably guessed that the teenager I was talking about in that tease there. The intro I do for every show is Benny. Yeah, my son is set to go to Israel for a month this summer. It's part of a camp program. I've been sending him to this camp since he was eight years old at age nine. He started going for a month. It's not a diabetes camp. But I took advantage of having more on the show to ask her for some advice. Because even though I let him go, you know, I am nervous about this whole thing. COVID aside, you know, this is a very, very big deal for me. He's super excited, and we'll talk about that in just a minute. With Moira

A big thank you to JDRF Desert West. That's the chapter that now includes Nevada, Arizona and New Mexico I believe they had me out for a they had me on zoom. It's so easy to say they had me come by. I hope we get back to that soon. But I did this via zoom, we had a great time. They have an ongoing event called type one talk. And they're bringing in authors, they have an author come in talk about the book read a little bit answer questions. It was a great fun time. I have to admit it was a little difficult to stay up because I know I’m such a baby. But it was on pacific time and I’m on the east coast. And I mean, I'm awake. We did it at I believe it started at 830 my time, and we went on with 10 o'clock. But I mean I'm not in bed, but I'm definitely in pajamas. Usually by which made it even more fun because I think maybe I was a bit looser. You know, just it was more casual in a way then during office hours. But I really enjoyed that.

And I got to say, you know, the world's worst diabetes mom had an amazing February and March. You know, the book came out in at the end of 2019. But thank you so much. If you are spreading the word or you've told friends about it, something happened this year, and it has sold more than definitely than I expected this year, but it's outselling some months right around lunch. So I'm very excited and I am working on the idea for Book Two. I'll keep you posted on that. But I'm always happy to talk to JDRF chapters, other groups, a mom group, you know, just to sit and chat. Just let me know.

Moira and D mom advice coming up in just a moment. But first Diabetes Connections is brought to you by Dario health. One of the things that makes diabetes management difficult for us that really annoys me and Benny, isn’t actually the big picture stuff. It's all the little tasks adding up. I mean, are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers no more wondering about how you're doing with your blood sugar levels. Find out more go to my forward slash diabetes dash connections.

My guest this week is my good friend and fellow D mom Moira McCarthy. She is an author, a writer and advocate and so much more. Her daughter Lauren was diagnosed at age six in 1997. And I started the Ask the D mom segment A couple of years ago here on the show. We love getting questions from you Moira and I, as you probably know, are very much aligned to philosophically when it comes to diabetes, which kind of makes sense because I learned an awful lot from her. She's one of my mentors, and I'm so thankful that I had her blog. Despite diabetes and her books to guide me early on in Benny's journey. I mean, even before I met more, I've told this story many times before I was a big fan. And when I finally got to meet her in 2015, we spoke on the same bill at JDRF. St. Louis, I was so excited, I was kind of intimidated to be speaking on the same bill as she was. And that's really how our friendship our in person real friendship started. I bring that up. Because while we're aligned, as I say, we also had our kids diagnosed at very different times in diabetes, tech availability, or even what insulins were available at the time. So you know, 1997, when Lauren was diagnosed, was really different from almost a decade later, 2006 when Betty was diagnosed, I mean, can you think that a kid diagnosed today when they leave the hospital quite often with an insulin pump and a Dexcom? Very different times. So I like that more. And I kind of overlap in that way and have a bit of a different perspective, just in our experiences, but some really good questions this time around. And as I said, I threw one in as well.

Moira, welcome back. It's always great to talk to you. I feel like we do this seasonally. Did we talk last year during allergy season?


Moira McCarthy  6:19

It's funny, because when's the last time that we did a chat like this to share with everyone? It's been? It's been a hot minute, or Oh, it's


Stacey Simms  6:27

been since last fall? Probably before maybe right around Halloween? Yeah, I


Moira McCarthy  6:31

can't decide if time is passing really slowly or in the blink of an eye. I just don't even know anymore. But I feel like


Stacey Simms  6:39

yeah, this this year is flying by and it's spring, is it really spring by you? It's usually.


Moira McCarthy  6:44

It's horrible. But it's spring on the calendar. But that's okay.


Stacey Simms  6:49

Well, we had a bunch of really interesting questions this time around. And I thought of you I was in a JDRF discussion. This is a really neat event I did with the the chapter in Las Vegas and surrounding states. So it was a couple of days after I've been there a few times. So I hope to go in person one of these days. But it was like a book club discussion, which was really fun. So I read part of my book. And then we had a whole group discussion. And I got a really interesting question from one of the moms who was there, and I wanted to run it by you.

This mom says she's pretty laid back, their son has type one, I want to say he is seven, but he might be a little bit older might be a tween, but the mom says she's pretty laid back really wants her kid to thrive with type one. But the father, her husband is a firefighter. He's a first responder, and he sees in his words, the worst of T1D. So he is very nervous that their son will have, you know, an unhealthy a bad outcome and all these words that he was using, and wants much more strict control, and really wants to get this message across to their son that you know, you've got to take care of yourself, where's the mom just really want to expose their son to the kinds of things that this firefighter is seeing? If all of that makes sense. What do you think about that?


Moira McCarthy  8:10

Well, so first of all, what they expose them to would very much depend on his age, and seven and a tween are very different. Right? So we'll just speak more generally, around it. Do our children need to understand the basics of type 1 diabetes, and why they do what they do? Absolutely. Why would you even a toddler, you, you must have done it with Benny that when you're giving them the shot, you say, you know, we're giving you this medicine so that now you can eat your food and it won't make you sick and things like that. And then as they get older, so you want them to understand it. But do you want to educate them in a fear factor kind of way? And to that? I would say no. Now, why is that? Well, that's because a number of reasons. First of all, children have very creative imaginations, and you can plant some really scary ideas in their head at a young age that may take forever for them to get out of their heads. Second, this gentleman, and thank you for his service, right sees the worst because that's his job to see the worst. If his job was to go visit everyone with diabetes every day, he probably wouldn't feel the way he felt. Does that make sense? Yeah. And so he's seeing these very rare, very frightening situations. So what I would say is, if there's any way that the mom and the dad can attend something together, whether it's virtual, or in person where they talk about the holistic approach to raising a child with diabetes, and we can you and I can talk about that a little bit right now for this mom and this dad. But as I've said to you many times, and as we all say to one another, we're not just raising controlled Diabetes, we're raising a full human being. And it's very important that a child grow up, secure, happy feeling cared for, not afraid of what may be around the corner, while at the same time having a basic understanding of why they might need to do what they would do. So if this child is seven, I would say there's absolutely no reason under any circumstance to talk about what that Father has seen, ever add to a seven year old. If this child is a tween 1112, I don't think it's the worst idea to maybe tell a story every once in a while. But I would also be careful of that. Because, again, you don't know if that person you're treating actually takes really good care of their diabetes, and is just in a bad situation you don't know, as an EMT, or a paramedic, paramedic, if there's an underlying illness that they may not know about, and they'll find out at the hospital or something. So, so even though you're there, you don't know the whole history. And I would just be careful around that. One of the things I will say is, I really do know, 1000s of families with someone who has type 1 diabetes in their family, and maybe five have had to call a paramedic, who I know, it's not out of the realm of possibility, but it's also not a probability. It's not it's way closer to never happening than it is to happening. And so based on that, I question whether you should build fear in a child to hope that they will take care of their diabetes. The other thing too is I know from raising my daughter, fear does not work in children. It's the same with everything, not just diabetes, they don't see down the road, they don't see danger, that part of them hasn't developed yet. I would say focus more on how he feels when he plays soccer, or he plays the tuba or whatever it is he does or he plays chess, or he reads, how does he feel them? That's what I would focus on. It's got to be so hard for that dad, though, with what he's seen.


Stacey Simms  12:08

Oh, yeah, yeah. Well, the way I answered it was, there's two parts to my answer. And the second part, I credited to you, I promise, because it's pure Moira. But the first thing I said was, we have to kind of understand that there are these issues of access, education, family support. And when, you know, from my experience with this podcast, my audience, the people who as you're listening, now, you are a very different and wonderful and kind of lucky bunch of people, because you are seeking out diabetes education, you now know where to get community support, if you don't have family support. And I do surveys of my audience all the time where these people have plenty of support, you know, they have a, they have community, they have friends, they have family, they have somebody to help them out. And I say all that because my guess and it's a guess. And this is not a value, state judgment, anything on people who call paramedics, we all need them when we need them. But my guess would be that the repeat people that this firefighter is seeing if that's indeed the case, are probably people who do not have the support and the setup that his son have. So it's not a fair comparison, in my opinion, of what his son may experience. And again, we have no idea what he's really seeing, right is a type two is a type one, does it really matter? Right Is this a Is this a father who may also see his son weaving without diabetes in every child that he takes care of?


Moira McCarthy  13:38

I was thinking that like I see a car accident, it must just be horrible. I mean, that have diabetes diagnosis is very traumatic to the parent. And it took me a long time to be comfortable is a weird word, but to be comfortable with it, you know, and if it's right in your face, like that, the poor man, but I would also say that you can go out and find the worst case scenario anytime with anything, and then dwell on that. Again, if it's put in your face every day, like this poor gentleman and his job, it's harder to look past, but he's gonna have to find a way to differentiate his child's diabetes from what he does on the road every day. And I just hope that he can, because I can't imagine how difficult it is to see that and then think about your own child.


Stacey Simms  14:29

And the second part of what I told this mom to try, as, and this is one of the things you've pulled out of your bag is write down what he is concerned about. And she should do the same. Anything she's concerned about about her husband overreacting and what it might do to their son, and he should write down. I'm not overreacting, this is what I see. And then bring it to the endocrinologist or use the patient portal just to talk to the endocrinologist without your child around especially a seven year old and see what the endo has to say. How many kids in your practice have called an ambulance three times in the last month? Or, you know, whatever he's really worried about? Or if this happens, does it mean that because we've talked about this, most of us kind of make up stuff? Because we don't know. And we haven't, we're afraid to ask.


Moira McCarthy  15:15

That's great advice.


Stacey Simms  15:17

Well, sure you gave it to me.


Moira McCarthy  15:20

But really, that is what I always did is just sort of went to the endo and said, This is what I'm worried about now. And then they would tell me why I didn't need to be worried. You have to trust your medical team to do that. And this, dad's probably going to have to think a little more than most of us have to because of what he's seen, you know, and then I know adults with type one who, when they're super low, prefer to call EMTs and have them come to their house and treat them and then leave without going to the hospital. I don't get it. But I know people who say they'd much rather do that than use glucagon,


Stacey Simms  15:53

but I'll try to follow up with them. I you know, I'm in touch with the chapter. So we'll kind of circle around and see if we can find out what happened there. But it is it that's a that was a unique one. When I saw that, I thought oh my goodness. You know, I definitely wanted to ask about it. We got another question. Heather says my son just started his first job. Congratulations. Should I have him give the employer a quick reference emergency form? Or is that not necessary?


Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen.  and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have it. Find out more go to Diabetes and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.

Now back to my conversation with Moira. The question is from a parent asking whether her child needs an emergency diabetes form at work. And this is a young adult, this isn't you know, a 14 year old kid that she's driving to,


Moira McCarthy  17:22

you'd say of course, my son just got a job. So he's only 16. But I consider 16 old enough. So I can think that if you are old enough to have a job, even if it's babysitting for people, you are old enough to make that decision yourself and speak for yourself. I think parents should advise their children about what they think might be a good idea. But at the end of the day, that's up to the kid in the work situation. What my daughter would do is just kind of nonchalantly when she started, she worked at a country club catering and in the pro shop. And then she was a bank teller. And what she did is after she started just like you had meters then now I guess it'd be your CGM just pull it out and say, Oh, you know, you guys just so you know, I've type 1 diabetes. If you see me doing this, don't worry about it. If I need anything, I'll let you know. That's it.


Stacey Simms  18:12

That's funny, because that's what happened to Benny. He just got a job as a grocery store clerk, he's stocked shelves, is that what it's called? He stock shelves. You know, it didn't make a big deal about diabetes. I don't think he even told them before he started. And then when he was going a little bit on the low side, and he took out his pump where his CGM numbers are and said, Hey, I'm going low. I've type one, I just need to sit down for a minute, you know, I'll keep you posted. I'll let you know if I need anything. And it was he said it was really easy. And of course, I was thinking to myself, the worst amount that I am like, it didn't even occur to me to, like, fill out a form or let them know. I mean, he does take care of it. And I'm lucky that way. But I'm curious and I don't I'm not as familiar with the ins and outs. I want to say legally, but with adults starting these jobs, full time, things like that. Are there ways that they should be disclosing or anything they should be saying or do you think it really is just up to their comfort level? I guess I'm just thinking about, you know, American Diabetes Association guidelines, that kind of stuff.


Moira McCarthy  19:13

Yeah, it depends on the job. If you have a job that you're only allowed to like they give you a policy that says you may only eat and drink food during your break and your break is 15 minutes at the same time every day then you need to have a discussion with your boss and say Just so you know, I'm gonna have a tube of glucose tabs in my pocket and and I may look at my CGM and pop one in my mouth but that this is why and, and the rest of it. I think Maren always felt that like if she was at work and she felt like she was gonna throw up she wouldn't have had a form filed in case she's ever sick. So she just sort of treated it that way. Now as an adult working now, Lauren just goes about her day. You know, the people she works with all know she has diabetes because they work with her, you know, and it just Sort of this job now it actually was part of the interview process because she works in prescription drug pricing, you know, so they know but for a teenager, my opinion, I let Lauren make her choice and how she did it. And that's how she did it. I do think that the people you work for and you work with do need to know you have type 1 diabetes, they don't need to know what your basil is, or you know how to give glucagon or anything like that, but they need to know, right? Just for some weird reason, you know, for whatever they need to know. But I don't think you need to go deep into it. Unless it's a very unusual job that has really restricted than I know, like, for instance, cashiers in the front of supermarkets By the way, Benny's not a shelf, stocker. He is a manager of product traffic.


Unknown Speaker  20:48

Oh, yes.


Moira McCarthy  20:51

I'll let him know resume. But if you're a front cashier, in other words, that's one that you may have to say to your boss, hey, listen, I just need to keep a juice box here and something here. And if I feel low, I'll just eat if I need to stop, I'll, you know, I'll buzz you. And let's just let the other staff know. So they don't think I'm getting some special treatment or something like that.


Stacey Simms  21:11

Yeah, that makes a lot of sense. And I'll link up any kind of advice, legal stuff for people who really do, as you said, you have a job where they can't leave their post, that sort of thing. I assume people like that would probably know what to do at this point. But I'll link that up anyway, just for some good info there. And I'll tell Benny, that it sounds like he got a promotion, he can tell me more about bananas. And it,


Moira McCarthy  21:34

you know how much things are stocked. And when they're stuck.


Stacey Simms  21:37

It's been really fun. And the timing has been really good. Just as a quick aside, he really just started and we let him because of the vaccines coming out, frankly. So yeah, when he got the job, we knew there was going to be a training period, and he wasn't gonna be in the store right away in North Carolina, it just worked out so wonderfully, that they opened up to grocery store workers. So as soon as he got the job, he was able to get the vaccine. And you know, even though he's not on the store floor all the time, I am certainly much more comfortable. He is now had both, and


Moira McCarthy  22:08

I would want that even my kid didn't have diabetes, just because yeah, goes to the supermarket. You know,


Stacey Simms  22:13

yeah, I'm thrilled. And he's so happy. It's a it's a nice thing. You know, when your kid gets really their first job,


Moira McCarthy  22:19

it's good for them to practice to how to be able to just sort of deal with diabetes on the run while they're working. Do you know what I mean? Like, I never had a problem with Warren thinking, gee, I feel low and popping a glucose tab into our mouth or taking a bite of something and not being like I have to stop everything. Because I feel low. Some people do have to, and they'd have to deal with it differently. But for her, she knew she was going to land in a high pressure job where she's running around all the time. And certainly she has. So now she's glad that she most of the time can just go with the flow with it.


Stacey Simms  22:54

You just got to make sure you just eat a lot of bananas and let them know if he's low.


Unknown Speaker  22:59

Just tell him to the whole banana don't take bites.


Stacey Simms  23:05

Okay, so I actually have a question for you. All right. This is because as we're focusing here on Benny some more this summer, COVID permitting, he is planning to go with his summer camp. This is the camp where he's gone every summer since he was eight years old for a month. And at this age, they go for a month to Israel. So awesome.


Unknown Speaker  23:27

I know. I'm so excited for him. I'm crossing my fingers for Benny. Right. Oh,


Stacey Simms  23:32

so again, COVID permitting, we have been talking to the group, this is not their first child was type 1 diabetes, who will be going he's pretty easy going. But we are going back and forth on what would I like? What would they like my biggest concerns that we are addressing? And I don't know the answer to really is just about how much does he need to take with him every day? I don't because they're on the move the entire time. I don't know if there's like a home base where they'll have all the stuff or if he needs to take everything every day. But that's neither here nor there. My question is for something like that, you know, knowing that everybody does things differently. But would you have any kind of non negotiables for a teenager traveling with a group abroad or somewhere far away for a whole month?


Moira McCarthy  24:19

So when Lauren only went for two weeks when she was a cig go to Israeli that she went to Washington DC, which is the first time she went really far away for two weeks, and there was no nurse or anything. We talked to the endocrinology team, and she came up with a plan that she felt she could be comfortable with. And the endocrinology team was okay with that. So I said that's fine. And part of her plan was I mean, there was no share them. But part of her plan was she did not have to report numbers to me through the day and it worked out fine. I mean, I don't know what her blood sugar's were when she was there, but I know she came home and had a great time. The thing that I could say let's go to the extreme and then go backwards from that. So let us you're not negotiable, as you have to see as numbers on your phone all the time. We've talked about this before, you don't know what he's doing, you don't know what the temperature is, you don't know what he ate for breakfast that day, it's only going to get in the way of the experience, if you want to manage it. And I know you don't. But if you wanted to manage his diabetes remotely from America while he was there, it would be crazy for both of you. And he doesn't need that. So I would say that pick a time every day, that would work for him, that isn't too awful for you, your time but if there's a time, that sort of works, maybe he could check in at that time every day. And if they're in the middle of something, you can just have a phrase that he sends you to say, super busy. Everything's great. Love you. Sure I can talk tomorrow, you know what I mean? Or something like that? Because that would just make you feel that the thing about this that I think is super good is his camp friends are going with him, right? Absolutely. Yeah. He's in an environment where everybody already knows and supports everything he needs. So it's almost like you're taking the camp, that you work so hard to help him be comfortable with me he in the camp works so hard with and just moving it to Israel for a month. And that makes it kind of extra good. Right? Definitely everyone around him if he was going alone, and he hadn't met anyone, and it was all new. Maybe I'd have some other suggestions. But given that, and I think you can do it, Stacy, I think you can let them go. And you know what, this will be great practice for college.


Stacey Simms  26:39

Well, we I will be calling you every day, we actually have one non negotiable that we have always had for Canada. And that is, and it is not actually up to him. It's up to the people with him. And that is if he throws up more than once in 24 hours. I get a phone call.


Moira McCarthy  26:56

Oh, absolutely. I wasn't even thinking of sickness. Yes. Right. Right. That's I know you were thinking Oh, like with my kid without diabetes. Oh, good point. I


Stacey Simms  27:05

was always thinking that, you know, we're really fortunate. I'm going to knock wood or something that you know, Penny doesn't get ketones very easily. Now, I've just jinxed myself.


Moira McCarthy  27:13

All right, good lord.


Stacey Simms  27:15

I'll say a Kenahora, too. But I don't know why I said that. But but to illustrate the point that I've always felt that that's the biggest danger when I send him away. It's just camp is dehydration. People not recognizing high blood sugars, you know, having an issue like that. And I figured that's something to look out for. So that's my really my only non negotiable. The other thing that he is asked because I asked, you know, he made he made the plan more he made the plan for this that we're proposing


Unknown Speaker  27:43



Stacey Simms  27:45

is, he said, he's probably gonna forget stuff, if he's got a bag that he's got to be repacking every couple of days. So the call that you mentioned that daily check in, he wants it to just be a photo of his backpack.


Unknown Speaker  27:57

Oh, that's brilliant.


Stacey Simms  27:58

And just say, Hey, mom, my stuff is here and knowing that he has to text me about it every day. And I think we'll do it before he goes to bed because it is a seven hour difference. Yeah, he first proposed Why don't we do it at breakfast every day? And I'm like, because


Moira McCarthy  28:10

it will not be breakfast time here. That's right. You know, what you might want to think about is how and you can do this now? How can he scaled back what he needs to carry every day when they go up? What can stay in his suitcase? Like if you could get a pen with some rapid acting insulin? Yeah. Then if his pump site goes bad, even if he's gone for the whole day, he doesn't need a site change and stuff like that, unless he really wants


Unknown Speaker  28:38

No, no, that's a good point. I think he'd be into that.


Moira McCarthy  28:40

Yeah, like, minimize what he needs to carry during the day, and then keep the other things there. And they may also if they're staying in the same vehicle, that's bringing them around to places you may be able to have him tuck a little bag into like the trunk of the bus or whatever, like ask the bus driver, can you just put this somewhere and have like, a couple sites in it or something?


Unknown Speaker  29:06

Give us a gift?


Unknown Speaker  29:06

They use the same? Yeah, yeah, we'll


Stacey Simms  29:08

find out. All right, I'll work back I like that I


Moira McCarthy  29:11

left. Those are both reasonable. Both reason things, you know, and that's super cool that he's thinking ahead about and understands what he might, you know, who doesn't forget things, I pull out the driver three times and pull back and now my sunglasses Oh, my wallet.


Stacey Simms  29:26

I had to come back into my house. I was running a quick errand. And I had forgotten one of the errand had a package in the house to send back so it happens all the time.


Moira McCarthy  29:34

So I think something for people who are listening to think about if you have a young child, and you're thinking, Oh, I'll never be able to do that. This is why as they're growing, it's really good practice to give them age appropriate freedom, whether it's play in the backyard on the swing set while you're not out there, you know, or ride their bike around the block with their friend at the appropriate age. I'm saying And as you let these things happen, you work your way up to sending your kids is,


Unknown Speaker  30:07

you know what I'm saying?


Moira McCarthy  30:10

Go from constantly overseeing it for years and years and years to bang, letting them go on something like this. And that's why you've got to kind of poke at it. And it's not as much for them as it is for us parents, because we have to get past our own Nxd. And that's how you do it. So you've done that. And now, Ben is going to reap the rewards of your being willing to put aside your fear for him so many times over all these years. Yeah, you. Well, thank


Stacey Simms  30:37

you more. And I'm glad you said it that way. Because one of the interesting statements that people make to me, and I know you get it, too, as well. Wow, I could never do that. Because I would worry, as though I'm not right. All kidding aside, the first couple years, I sent him to this camp, I would wake up at four o'clock in the morning, the first week or two that he was there. And I would wake up thinking that's it. He this was the stupidest thing I ever did. This is terrible. What was I thinking? And he's fine. Right. And so it was, it's our fear. And it's, it's still there. You've heard me kind of groaning over here about going and making all these noises. I am nervous, but I know I have to let him go. So it's it is about it really is about facing those fears. And little by little, I will never forget the first time I let him go play in the snow.


Moira McCarthy  31:24

That was terrifying. Oh, God, everybody goes low in the snow. So the way I always say it, and I know some people think it's hokey, but I don't care. I'm a hockey person. So whatever is, in my opinion, the most loving thing a parent can do is to set aside their own fears on behalf of their child's success and happiness. Yeah, within reason. You know, if Ben, he wanted to try lighting a barn on fire, I'd be like, check your blood sugar first. Just kidding. But you know what I'm saying? Yes,


Stacey Simms  31:54

you got it, you just got to do it. And it's, it feels really hard. And it's scary. But when you start to get to the other side of it, it's wonderful, right? It's what it is wonderful it is. I know that sending him to this camp and diabetes camp was great and helped him in different ways. But sending him to this camp, I think has been the seminal experience of his childhood, it has given him a gift of independence, friends, confidence, troubleshooting, you know, crazy things have happened. And they don't necessarily call me because he manages it with the help of the people that are there.


Moira McCarthy  32:33

And think of how much easier it would have been for you to just say that you can't do that. I know your sister went but you can't because you have diabetes, and instead of him moving toward this independent, funny, awesome young adult who's gonna thrive in life, he'd be not doing the things he wants to do, because he never would have experience knowing that he can, right. Yeah, good for you.


Stacey Simms  33:00

Oh, I'm only I'm only quiet because I'm very superstitious. Moira, and I know it's silly. But I worry, we have to move on from saying nice things about Benny.


Moira McCarthy  33:10

I have a friend whose daughter went to South Africa on an exchange program and had type 1 diabetes. And when she was there very far away from her parents, she had to have her appendix out and it was fine. Everything was fine. Her parents didn't get on a plane and fly one of the adults who oversaw the thing stayed with her. The hospital knew type 1 diabetes, everything was fine. Wow.


Stacey Simms  33:34

Okay. All right. I'm gonna start wrapping us up here, Moira, but before I do, you posted something really interesting the other day and I want to ask you about it you spotted? Well, I'll let you tell the story. But you spotted an adult who looked like she needed help with a low blood sugar. So tell me about what happened.


Moira McCarthy  33:51

So it's really strange. I've been swimming a lot. And I go to deep water exercise class. And so in deep water, exercise class, you you're exercising, but you're kind of looking around. And this pool is huge at my club and way, way, way over the other side, in the shallow end, where they do physical therapy and little kids swimming lessons and stuff. Just on the corner, my eyes saw this woman and it was like, she looks kind of wildly funny, you know. And then I saw who I realized is the physical therapy instructor go over and kind of take her by the shoulders and bring her and sit her down on the step in the pool in the water. And I thought I don't know why she just had the book. I thought she's having a low blood sugar. And then I saw the club manager come in with a can of juice and she opened it up stick a straw on it and they were handing it to her and I thought oh, that's what it is. It's a low blood sugar. But as I watched the woman struggling with it, and clearly wishing that it wasn't happening, she wasn't showing that visibly and some of it I may have just been projecting, you know, but I watched it and and I didn't go over to offer help because I was so far away and I I had feeling that this woman just didn't want attention, but she needed attention. And what struck me as I watched it and thought about it was, I had, you know, it's been 24 years since Lauren was diagnosed, my family is raised millions of dollars and we're not wealthy people. I do the ride every year, I used to do the walks, you know, I speak at places, and sometimes you just feel like, Lauren seems like she's doing really well, maybe, maybe I should move on. And I don't ever really feel that way. But just sometimes you're tired, you know. And when I watched her, I thought, I have let myself forget that even though my daughter is down in Washington, DC with an incredible job, thriving career, thriving life, that's her reality. You know, it's easy for me to forget that because it's not my body. And it's not my mind, and it's not my diabetes. But it was a stark reminder to me that I will never regret raising my daughter to be tough about this and just live her life and not let it stop her from what she's doing. But I need to remember that raising her to do that doesn't mean that it's easy, right?


Unknown Speaker  36:16

Yeah. Oh,


Moira McCarthy  36:17

I feel renewed. I feel like I can't stop. I have to keep trying because it doesn't go away. And I guess the way that I said it a long time ago that I'm remembering right now is my daughter's fine, but this is not okay. And I think watching that poor woman, not wanting to be getting the attention not wanting to be low trying to get things going get when in my head. I'm like, No, you need protein. Diabetes mom, we found out in my in my exercise group, and she was to glaze over and I'm like,


Stacey Simms  36:55

well over that. Peanut Butter crackers in your bathing suit.


Moira McCarthy  36:59

I think that watching it was sort of a gift to me because it reminded me to respect the disease and to keep doing everything I can to make it better for all those people like that woman and like my daughter and like Benny and like everybody else, right? Yeah. Yeah.


Stacey Simms  37:17

I'm so glad you shared that. It's just you know, those reminders are so important along the way. As you know, as you said, Lauren is an adult she's not at home. It's wild to think about I still can't believe Benny's driving. 16 It's, I know we only got a couple more years before college.


Moira McCarthy  37:34

Yeah, Lauren's moving into her own apartment she's lived with her old college roommate said she got out of college. Oh, wow. Next week, she will be living completely alone for the first time in her life. And she's very excited about it. So it is


Stacey Simms  37:49

good for her. And I'm sure she'll have the the juice and the crackers with protein. You need a protein? Well, normally, this is where we would say Where are you going? Where are you speaking, but we're getting there. We're getting there. And later this year, perhaps but it's I think it's still fun. I know really sick of virtual, but I gotta say I love the connection. And I'm doing something really fun with my local chapter, which is now a couple of states my local jdrf chapter. And that is later on in April, and I'll be posting about this on social. They're doing like a spirit week. It's a very clever, fun idea that every day is a little different. And I am hosting a big trivia game at the end of it. And I'm very excited. It's all gonna be diabetes trivia, but nothing, you know, nothing stodgy or boring. And I'm really excited to do this and I hope I get to do it for more chapters.


Moira McCarthy  38:41

That's a great idea. That'll be a lot of fun today and I help tape the upcoming virtual gala for my chapter in new languages now the Greater New England chapter so I'll be speaking a little in that but mostly that night will be about martinis from home and fitting perfect titles and stuff like that. But um,


Stacey Simms  39:01

you have Martini earrings, or did I make that up?


Moira McCarthy  39:04

You make that up that I may have had them and I don't remember either. You know, me and my whimsical jewelry?


Stacey Simms  39:10

No, I know what it was when we did last summer we did Hollywood Squares for friends for life. And you had a martini but you


Moira McCarthy  39:18

had I was acting like Joe and morally but it was water just so you have a martini at 9am never


Unknown Speaker  39:30

never before 1030


Stacey Simms  39:31

see I'm just a I'm just a frustrated game show host one of these days maybe I'll get to do my dream career. I'll digital and runaway to do card sharks.


Moira McCarthy  39:42

Dr. Oz can do. I don't see why you can't move Don't get me started.


Stacey Simms  39:46

Well worth Thank you so much. It's always so much fun to to check in and I appreciate you answering one of my questions this time around.


Moira McCarthy  39:56

It's the first time I've ever answered a question for you right


Unknown Speaker  39:59



Moira McCarthy  40:00

It's good to talk to you again. Stacey. We'll do it again soon.


Announcer  40:09

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  40:14

As always, I will link up Moira’s blog and more information, how you can find her books and all of that good stuff. And I should mention here, you know, we talked about camp a lot and how great non diabetes camp can be for your kids. I am taping an episode. I hope to have it out next week, but if not, it'll be out the following week. I want to be quick on this because camp is coming up or at least you know, Camp registrations. If you if you're doing sleepaway camp, they may have already closed but I want to talk about camp. So I'm working on an episode or roundtable with parents who have sent their children like I did to non diabetes, sleepaway camp, and adults who went to non diabetes sleepaway camp as kids so we can get some best practices in and more of those non negotiables, like I mentioned in my chat with Moira. And that should be out. Like I said, I really hope next week, but if not the week after that, all right innovations coming up, we're going to talk about a new option for glucagon. And a new step forward for some folks that we've talked to previously here on the show.

But first Diabetes Connections is brought to you by Dexcom. Dexcom has a diabetes management software called Clarity. Do you use this for a very long time, I mean, longer than I'd like to admit, I thought it was something that just our endo could use. But you know, it's really helpful. And now I actually have it on my phone, you can use it on both the desktop or as an app, it's an easy way to keep track of the big picture. I find I use it when we're adjusting things, you know, which I felt was not stopped there for a while. But at age 16 Benny is kind of leveling out on growth and changing basil rates, at least for now. And Clarity really helps us see longer term trends. The overlay reports help context about his glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on and how they can better help. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us find out more go to Diabetes and click on the Dexcom logo.


In our innovations segment this week, the US FDA has approved a new glucagon option they have approved Zegalogue. I hope I'm saying that correctly, is an auto injector and a prefilled syringe. And it is pretty amazing that we went for so long, I mean pretty much until a year or two ago with one option. And now we have three. So Zegalogue joins Baqsimi the nasal glucagon and the Gvoke Hypopen which is a sponsor of this program, you heard me talking about them earlier. Zegalogue will be available in the US later this year in June for ages six and older diabetes mine has a terrific article as they always do on Zegalogue with all the information, although not a Pronunciation Guide couldn't find that anywhere. But apparently they had initially thought to launch this as brand name hypo pal, but they dropped the name I'm my guess is that it was too close to hypo pen, you know the Gvoke Hypopen from Xeris. And, you know, I wonder if I'm not only marketing, but there were other concerns about that.

This round of glucagon is also being used, interestingly, for the investigative clinical studies with beta bionics. That's the islet pump, the dual chambered insulin glucagon pump from Ed Damiano that we have talked about for a very long time here, but this is the brand of glucagon that they have been using. That is not to say that they couldn't use another one. So the next time we talk to the iLet folks, and I've been working on that we've been going back and forth on scheduling and the like, but we'll get it and I will definitely ask them about this. It's also worth noting that Zealand, the company behind this, if I haven't mentioned them yet, that Zealand and Xeris the hypo pen folks are both studying a mini dose version. This would be small doses of glucagon, where you're trending lower, you don't need the emergency. A lot of parents use this for stomach bugs. Maybe adults too. I'm more plugged into the parenting side of things. I know insulin camps have done this so many glucagon is a popular off label use. It's definitely not FDA approved. But these two companies are now already studying how they could launch a mini dose version probably a couple of years away. interesting to think about.

I want to bring you up to date on another story we've been following last August we talked about which year from invincible. This was a website an app to help caregivers to help schools to help nurses and teachers and I guess what you'd call non healthcare personnel. You know, the the front desk Secretary that's who was in charge of any diabetes for many times when there was no we had no full time school nurses elementary school, how to teach all these people how to better support their students. Bob was diagnosed with type one when he was 18 years old. He said he was totally unprepared to deal with everything and he built invincible, he says to make it easier for kids to grow up with type one. And he just launched a new app. And it is fourteens invincible helps teens living with type one, build independence and have fun doing it. I have not taken a look at this, I apologize, I will see if any will take a swing through it. But we put it in the Facebook group if you'd like to take a look. And I love what he's doing here. Teens are tough man. I'm interested to see what the reaction is on this. What he does have on his side is that he has taken into consideration feedback, input, all that stuff from actual real teams. And you can see some of that and some of their feedback on the website. So this is not just somebody kind of coming into the community and thinking they know what to do. This is someone from within the community who has a lot of experience that has taken a lot of time to ask the right questions, and to admit what they don't know. So I'm excited to see what happens with invincible and Bob, I wish you all the best.

Hey, next week, we are back to good news. I need your Tell me something good stuff, send it into Stacey at Diabetes post it in the Facebook group or just DM me on social media. I'll be asking because I love to share your good news stories.

Stacey Simms  46:12

Before I let you go a couple of things to look forward to in the next couple of weeks. I mentioned the trivia I'm doing for the JDRF chapter here in Charlotte. I guess it's now the Carolinas chapter. And I'm really excited to do that. I am just a frustrated game show host as you know if you've listened to some of the silly episodes we've done over the years. I love this my college radio station group, which sounds a little weird, but we have been doing trivia once a month since I don't know since the pandemic started maybe since last March. That's a really tight knit group. We have a reunion every year. And it's just so much fun. I am so bad at that trivia because it's all like 90s music. It's it wasn't a news radio station. Although it did have news. It was a hot AC pop station, adult contemporary music for those of you not up on the radio lingo. And I was there in the late 80s, early 90s. But it's just really fun. Anyway, long story short, I'm doing a modeling my trivia over that good time I have with them every month and it's going to be a lot of fun. It's not going to be scientific diabetes questions. So if you can join me for that if you're in our local area. If you think that sounds fun, and you'd like me to come to your chapter or group, I will be more than happy to do this for you. And we'll have a lot of fun.

All right, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you for listening. I'll be back in just a couple of days with a classic episode, so I hope you can listen then. Until then be kind to yourself.


Benny  47:38

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

Apr 1, 2021

Sebastien Sasseville has an incredible track record of athletic accomplishments. He's climbed Mt Everest, finished six Ironman races and completed the brutal Sahara ultramarathon. In 2014 Sebastien ran across Canada - the equivalent of 170 marathon in nine months - to raise awareness for diabetes. He was diagnosed with type 1 as a young adult.

These days, Sasseville is a motivational speaker and author and  late last year he teamed up with Tandem Diabetes as a brand ambassador.

This interview was taped in the summer of 2015 at the Friends for Life Conference.

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

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