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
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.
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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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 connections.com 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 Dario.com 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 connections.com 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
Yogurt
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 connections.com 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 dexcom.com 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 dexcom.com 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.
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 touringplans.com. 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.
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.
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 (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 connections.com 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 dario.com 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 connections.com 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.
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.
Check out Stacey's book: The World's Worst Diabetes Mom!
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Episode Transcription
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of 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 connections.com. 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
Wyoming.
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
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 dario.com 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 connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.
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
grasshoppers
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
ah
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 connections.com 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 connections.com. 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
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!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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There are a lot of terrific small businesses creating products to help with diabetes management. We've seen families with 3-D printers making insulin vial cases, people who've come up with better ways to make your CGM stick to your body, and creative clothing with places for pumps. What if you could search through those products in one place? That's the question Adam & Celeste Litt decided to answer when they started their online marketplace, The Useless Pancreas.
Adam was diagnosed with LADA a few years ago. He and Celeste share what that diagnosis was like (he was initially misdiagnosed with type 2), how they teach their two boys about dad's diabetes, and what they hope to accomplish with the Useless Pancreas.
In Tell Me Something Good lots of teens and young adults with new jobs and a bunch of sports milestones to brag about.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Check out Stacey's book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!
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Episode Transcription (rough transcription, has not yet been edited)
Stacey Simms 0:00
Diabetes Connections is brought to you by Daria health manage your blood glucose levels increase your possibiLitties by g evoke hypo pin, 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 0:28
This week, lots of people get a diabetes diagnosis themselves or in their family and they create a product or write a book or invent something to help others. Adam and Celeste Litt took a
Adam Littt 0:40
broader view. I just see all kinds of different really cool stuff out there. And I think that's part of the magic as well. Stacy is there's so many questions out there. What is the solution for this? How can I help this and you get shipped to all these different places and sites. It's not really in one place and people don't always really know where to go.
Stacey Simms 1:01
Adam was diagnosed with LADA a few years ago, he and Celeste join me to talk about their marketplace for T1D products and services called the useless pancreas.
In tell me something good. Lots of teens and young adults with new jobs and a bunch of sports milestones to brag about this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. Are we so glad to have you along. We aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed with type one right before he turned to more than 14 years ago. My husband that's with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting and that is how you get the podcast and Adam Litt who I'm talking to this week. We connected many, many years ago. Well it was a one way connection because Adam used to listen to me on the radio. And it was just funny to think about how you know things like that kind of come full circle. As I always say for the start of every show. You know I have a background in broadcasting here. I live in Charlotte, North Carolina. I worked in radio here for 10 years. I hosted a radio morning show Charlottes Morning News, the city's top rated morning news show,
basically, I got up in the middle of the night and got to work by four o'clock in the morning to go on at five for four hours a day trapped in a box with a couple other guys. And we had a great time. But I love that. But after 10 years of getting up at 233 o'clock in the morning, I definitely had had enough. But talking to Adam just reminded me about that connection that you have with your listeners when you do a job like that, you know, he commuted into Charlotte and listened every day. And my son Benny was born in 2004. And I was on the radio at that time. So my listeners went through all of that with me. And then they went through his diagnosis with me. So he knew the story. Well before the podcast, it just took me back because I was very lucky to have the career that I really always dreamed about having when I was a kid. I worked in radio first part time. And then I worked in television for more than 10 years as a local reporter and anchor then came that decade in Charlotte doing radio. And then you know, it's funny, I've really I've spent almost the last 10 years and I hadn't realized it, I left the radio station at the very end of 2012. And I did some freelance work. I worked as a multimedia journalist, it's really a one man band, you know, you're shooting your own stuff for about a year after that just for health insurance. But I've been on my own running my own business for a long time. And I hadn't realized how long until I talked to Adam and we figured out when he must have listened to me. I don't miss getting up in the middle of the night and I don't miss some of the nonsense of working at a radio station like the one I was at and that's another long story. I do feel extremely grateful to have been able to kind of create this radio job for myself and to be able to serve you and do this and have listeners all this time. We're coming up on six years this summer and every time I get a Litttle radio reminder like that I just want to take a moment be thankful so I really appreciate having you here
we will talk to Adam in just a moment and his wife Celeste but first Diabetes Connections is brought to you by Gvoke HypoPen and you know almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's where Gvoke HypoPen comes in. Do you focus the first auto injector to treat very low blood sugar? Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com slash risk.
My guest this week saw a gap in the diabetes community and like many of us, they jumped into filling. Adam Littt was diagnosed with LADA A few years after being initially mis diagnosed with Type two if you're not familiar with LADA 80 is latent autoimmune diabetes in adults it's also called type 1.5 it presents a lot like type two but it's really type one it's just slower moving is a really good kind of basic definition of it and i link up more information we've done lots of episodes on LADA but i like to explain it you just you know you never know if this is somebody's first time hearing about it adam and his wife celeste have started a new website it's a marketplace for diabetes products called the useless pancreas and i will link that up as well in the episode homepage it is useless pancreas all one word full disclosure my book is listed as one of the products on that website but they don't pay me any extra to list it there and no money exchanged hands for this interview adam and celeste thank you so much for joining me it's great to talk to you today
Adam Littt 5:48
thanks so much for having us yes thank
Unknown Speaker 5:50
you
Stacey Simms 5:51
yeah this is gonna be fun i have so much to ask you about our charlotte connection and your website and the uselessness of everything that you're doing but let's start at the beginning here if we could adam tell me about your diagnosis
Adam Littt 6:06
sure yeah be happy to go into that stacy so i was a ladder diagnosis the you know late onset type and at first and probably probably very similar to a lot of people's stories out there i was diagnosed as a type two and this was around my mid 30s and you know what stacy after that they diagnosed me type two that was a Litttle pudgy and i said yeah i'm just gonna go ahead i'm going to lose weight i'm going to work out i'm gonna get really fit and when i lost weight when i started losing weight i started losing weight at a pretty rapid rates where people started making some comments like well you're you're getting reasonably thin probably a Litttle you know fitter than where you ought to be and i blew this off i completely disregarded it you know i had my a one c's checked for a couple of years and they were maintaining in the mid sixes and you know everything was fine and but i kept getting healthier and healthier as far as weight control and diet and everything else and it wouldn't budge and then i went off to las vegas with some friends we partied a Litttle bit out there and after that i came back i was feeling really bad the day after i came back as you can imagine from las vegas and it went down in my workplace they're sort of infirmary set up and they took my sugar because i was again a type two in their eyes and it's 250 and they said you know let's go ahead and check you out and they they look they found ketones like you're off to the hospital right now and then you know after that it was the typical story you know you go see the end oh you do the tests you get the diagnosis my a one c somehow went from six and a half to it was 10.5 i think for that three month period so it was some rapid acceleration maybe you know it was just time i guess so anyway and it just gave out and was it las vegas probably not
Unknown Speaker 8:03
well it was also partly your birthday cuz your birthday was my birthday yes
Unknown Speaker 8:07
that was my my diversity is that what they call them
Celeste Littt 8:10
diversity is the day after his birthday
Unknown Speaker 8:14
yes yes there you go
Stacey Simms 8:15
so what during this time kind of what were you thinking you know 30s is young for type two to begin with but it's not extraordinary i mean were you kind of thinking things were funky
Celeste Littt 8:26
you know looking back on it i i think we saw signs and didn't recognize them up until that point so it was a Litttle scary i mean here i am with two young boys and you know thinking oh my goodness now i have one more thing on my plate adam sometimes put refers to the diabetes as his third child
Stacey Simms 8:48
adam had you ever heard of LADA
Adam Littt 8:50
no i had no idea as a matter of fact when my doctor first throughout the term lot i said i don't know what you're talking about she said well it's type one and a half so what do you mean type one and a half so i started looking all this up and stacy you know during this period where they do all the blood work you know you just pop every night and you're looking what is lot and i'm like i hope it's not tied to my biggest fear at that time was again a type two i was pretty well control they'd never had prick myself at all to take my pleasure my biggest fear was oh my gosh are they going to come back and start telling me i have to test my blood sugar once or twice a day well different story now but yeah we went through all that
Stacey Simms 9:31
it is funny what your initial thoughts are when you get that diagnosis because we don't really have any idea right unless you're in it and so let's say i ask you because as you know in many families mom has a lot going on i'm sure adam is very responsible with his as he calls it his child that's their child there but i'm curious too when you heard he had a lot of what first went through your mind
Celeste Littt 9:53
oh wow like i said before i feel like i was overwhelmed it was a change in our lifestyle we actually had to take some time off to really figure out how to manage the type 1 diabetes and how to carry things around and how to deal with all the lows and the highs and there was this learning curve at the very beginning that was just very overwhelming for me especially trying to manage and make sure that he was okay he obviously wasn't on any Dexcom or any pump at this point he would test his blood sugar and it would be really low there were a couple of really scary moments at the very beginning where he had some 30s blood sugar levels and just thinking also just about having to raise these kids by myself there's always that thought in the back of your mind and and or am i gonna wake up and find you know that he didn't make it to the night i was constantly worried about him all night long and just during the day when he was away at work things like that
Stacey Simms 10:52
and did you know that
Adam Littt 10:53
did i know she was worried about me stacy well to that extent no i at all it's nice to to hear she's always been a wonderful caretaker and she carries around two Litters for me stacy wherever we go you can always see the concern obviously it did make me think stacey have you know when i was first diagnosed though i remember i was sitting downstairs with one of these lows that she was talking about and my older son who was still very young at the time she may be honey he was what like seven or eight at that time something like that he was looking down as i was experiencing this this low and shaking and trembling and not knowing what was going on i remember this this vividly and he didn't really know how to help me either and that was actually a reasonably scary moment it was all just brand new so glad we're you know we've learned since then
Stacey Simms 11:45
yeah are the kids kind of on board now i mean they're they're tweens i guess we could call them at this point do they kind of i'm sure they understand more and they they're you know they can help out if needed
Adam Littt 11:55
or though when we when we go out to the golf course they you know they pack smarties in the bag and stuff like that and you know if daddy ever has a severe low whatever it might be they'll go and run and get the two Litter they'll pour it for me and they'll stand by and make sure i'm alright so they're they're good kids
Celeste Littt 12:12
i feel like we've been proactive about that and we've tried to prepare them a lot for how to handle an emergency situation it's really important for me to continue getting them trained in first aid cpr and things like that on a regular basis so as they get older they're just they feel competent enough to deal with a such situation if it were to arise what's the two Litter the lemon lime soda
Unknown Speaker 12:37
hey it's probably sitting on my desk over there dc
Unknown Speaker 12:41
what does it like storebrand
Unknown Speaker 12:42
sprite is from lead oh yeah yeah it works it does a job it's quick
Stacey Simms 12:50
it's funny though because i really feel like i should mention before we go any further that while you and i don't know each other you have known kind of me since benny was diagnosed because and this feels really weird to say like you listen to me on the radio i mean i don't say that to weirdly brag or anything but it is funny how you have these connections with the diabetes community that when you are diagnosed or when your child is diagnosed it's so nice to kind of i know from my experience i knew people before benny was diagnosed is why i'm bringing it up and i was able to say oh my gosh i remember and i remember this kid evan that i had met several years prior and he was this nice normal funny kid i was like okay my kid's gonna be alright because i remember evan is all right and i'm curious do you listen to wb t and we didn't talk about benny all that much but you do remember him having diabetes
Adam Littt 13:37
i do and i remember i remember driving to the same company i still work for every morning and listening to you in the crew on wb t and i remember these sort of snippets and you would talk about benny and what i really heard come through i didn't fully understand even though we do have a connection to family stacey right i have a half brother that was diagnosed in 12 but you know he's you know he lives in new york and we talk whenever but i never flew him sandy but but hearing what at what i heard is i heard the amount of emotion that came through when you talked about it right and that's what i remember from those you know those discussions that you were having and things like that and you know also you know the the passion for what you were doing in the community so that that really did resonate and then you know so many years later i'm diagnosed i run across you again i'm like stacy and she's in the type one community and here it is i'm like i have to go ahead and shoot an email right now and that's that's what i did and now we get to do this really cool talk so
Celeste Littt 14:38
yeah we appreciate it
Stacey Simms 14:40
oh of course of course unless it's funny to think about that vinnie was so young you know i had him while i was working at wb t so it's really funny to think about when did you well i'll ask celeste i'll start with you here when did you all get the idea for the useless pancreas
Unknown Speaker 14:55
how did that come about
Stacey Simms 15:01
Back to Celeste answering my question in just a moment. But first Diabetes Connections is brought to you by Dario Health. bottom line, you need a plan of action with diabetes. We've been 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 a one c 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 Dario comm forward slash diabetes dash connections for more proven results and for information about the plan.
Now back to Celeste and how they got the idea for the useless pancreas.
Unknown Speaker 15:54
Well,
Celeste Littt 15:55
it was actually Adams idea. I was visiting some relatives in Florida, and I left him at home that that visit I brought the kids down, we visit the grandparents, I guess we've kind of talked about doing something for the type one community for some time, but we weren't quite sure where we fit in yet. And while I was gone in Florida, he was up here and it just kind of hit him. He was always on a lot of Facebook boards and things regarding diabetes to find the answers to his questions and to see what other people are going through. And a lot of times people always were wondering, well, where can I get this? And what is the solution for this issue that I'm having? And so he came up with that idea? Well, you know what, let's solve these problems. That's pretty much where we started from. And I don't know if you have anything to add to that.
Stacey Simms 16:46
Adam, was there like a item that you will have an aha moment where you thought, Oh, my God, I need to do this.
Adam Littt 16:51
Yeah, there was there actually was Stacey, it's interesting. So yes, less left, I had quiet time. And I guess this is what I do. In my quiet time, I just start thinking of things to keep myself busy. And so yeah, it was, you know, it's amazing, because the type one community, I always in, not in a negative way, Stacy, but I always feel it's just a massive population of just really good people just looking for solutions. But the community is underserved in various ways. And on some of these big boards, like the Dexcom boards, a lot of people would go out there and they would post, you know, whatever they were selling, whether it would be as a hobby as a business just to support their type one child, whatever it may be. And I think this one board had maybe 30,000 people on it massive, you know, creating
Unknown Speaker 17:35
a Facebook group,
Adam Littt 17:37
a Facebook group. Yep, I'm sorry. Yep. Yep. And, you know, the moderator said, No, look, I'm really sorry, but we can't have these solicitations or posts anymore. And somebody else posted up there, you know, that's fine. You know, you put a comment on his post saying, Well, look, you know, we started this Litttle other community. And, you know, you could go ahead and buy and sell on Facebook right here. And I went to that community as well, anyway, you know, and you saw people just trying to go ahead and solution and sell their goods, you saw people looking for them. And I said, you know, this is great, but there's got to be a better way that we can bring this community together and make the transactions easier. And that's how sort of the whole concept came to be Stacy.
Stacey Simms 18:15
So tell me what it is. This is like a flea market almost. For all the diabetes goods and services. Maybe flea market isn't the best word.
Adam Littt 18:23
No, it's it's okay. I mean, that's, that's actually exactly how we started. And we started. And so we started, you know, talking to some of these people on these boards, we said, you know, look, you, you if you want to take it a step further, you know, we'll handle the transactions for you and just go ahead and post it up. And people started started doing that. And we started getting a Litttle bit of traction, the first site we rolled out was really, really terrible. And eventually, it was terrible. It was awful. It really did look like a flea market actually is less right.
Celeste Littt 18:53
But if you think about it at a flea market has multiple vendors all trying to sell products. And so yeah, actually, flea market is not a bad term for what we have at the very beginning.
Stacey Simms 19:01
I like a good flea market. Maybe that's not the best term. We need a better phrase for it. marketplace. marketplace marketplace.
Adam Littt 19:09
Yes. I mean, even eBay, they call it fleabay. Right. You ever heard that term, but anyway. But yeah, it started out pretty awful, Stacy. And you know, as we started going, at least the design, the concept was always there. People loved it. And we had some really early adopters despite the design and the look and feel of the site. And we started talking to some of the larger companies and the larger companies said, you know, we're excited about the idea. We love the concept of bringing everything together in one place, almost like a you know, an Amazon and everything store for type one diabetics, which is really how we started to head but we don't, you know, want to, you know, we want you to just put up everything for us. We want you to sort of host it for us and take care of the business and we just want to be sort of a we want you to be a marketing outlet for us and that that's how we've trained And now states that we handle, we handle everything we handle the really small guys that are selling, you know, like these decorated vials or patches or they have these seat belt Oh, girths. Yes, stickers, a ton of people stickers on Etsy for their kids. And then you know, we move all the way up to the, to the bigger guys that have, you know, these really high end diabetic bags, accessories for supplies, you know, the the insulin cases, the, you know, cases for the various pumps, things like that. So, you know, the idea is, is to get everything under the sun, type 1 diabetes, so all of us all the community can go to one place and find sort of the solutions that they need.
Celeste Littt 20:41
The main goal, I think, is to have people be able to share their solutions with others in the type one community and provide a place to do that someplace, even if you don't have your own website, you can get your own storefront on our website. So you could start out with that, and then move on to a more, you know, larger company setup where we have a drop ship option. It's really for all not just for large companies.
Stacey Simms 21:03
And I'm I won't ask you to play favorites, and everything on the website is fabulous. But have you found anything that you're using? I mean, I'm not I'm not seeing any gLitttery stickers on you.
Adam Littt 21:16
I'm really simple guy, right? So I don't use much in the way of anything, I actually just I keep the basics. Although I you know, I will say I really tend to favor some of the patches out there because you know, I have constant like everybody does with the I wear Omni pod, the word Dexcom. That does tend to peel away. And some of the, you know, some of the CGM patches and the Omni pod patches are really great solutions when you've tried everything else like skin tack and stuff like that. Yeah, those those patches seem to really help beyond that, as Celeste mentioned, I want to say Stacy, the creativity of some of these people on 3d printers, engineers making cases, as less said somebody came up with a design to prevent compression modes where you, you know, put basically a almost like a case around your Dexcom. And you sleep with that. And that seems to help. We've got people out there, we just on boarded a new business the other day that that actually, if the adhesives, if the patches don't work well for you, he's actually got a Litttle Litttle belt to go around and secured or if you're really active. So that seems to help as well. So you just see all kinds of different really cool stuff out there. And I think that's part of the magic as well, Stacy, is there's so many questions out there. What is the solution for this? How can I help this and you get shipped to all these different places, and cites it's not really in one place, and people don't always really know where to go. And now we can present all these options to the type one world,
Celeste Littt 22:51
I wanted to just throw something in there as well. We are worldwide, we have a global type one community. And a lot of times when I'm looking at products, I'm finding different products over in Europe and in Australia and some other countries that I have not seen here in the US yet. And if people aren't searching for something in particular, they are never, they never know what's out there to be able to solve their problem,
Stacey Simms 23:16
you'll ship like if I see something I live in Australia,
Celeste Littt 23:18
well, the cool thing is, is we actually don't carry any inventory, we're only dropshippers. So the companies choose where they will offer their products to where they will ship them to. And a lot of companies will ship to the US or we'll ship to Australia, Europe, UK is very big on our on our community as well. So the more countries that they're able to ship to that the more obviously the more sales they'll get, and the more they'll be able to share their products with other people who can use them around the world. And I want to say as well, Stacy, it's clearly listed on on each of the listings, where where the shipping is, but we will always go ahead and reach out for somebody, if somebody asks us if, you know if they can ship to that particular country, we'll certainly go ahead and contact the vendor and ask them, you know, we want to try to do what we can where we can for both parties. And to be clear, this is a business for you all.
Stacey Simms 24:08
So you are making money on this. We are
Celeste Littt 24:11
okay. Very Litttle. But
Unknown Speaker 24:15
that's the amount of work we're making less 510 cents an hour. Oh,
Celeste Littt 24:19
my goodness, not even not even but it's okay. Right. But I
Stacey Simms 24:23
just wanted to be clear that the way it's set up is that you know, the you are going to make money on the transactions and that kind of thing.
Adam Littt 24:31
We are Yeah, we're a mission driven organization in the sense that we want to serve the type one community but admit it's a for profit business for sure. I mean, as with any startup, Stacey, I mean, most of that gets most of it all of it gets dumped right back into getting the word out advertising listing, you know, and basically soliciting right back out to the community.
Stacey Simms 24:50
Yeah, well, you've heard the podcast I have sponsors, I have no issue with ethically making money, as long as everybody's upfront and clear, as you all are.
Adam Littt 24:59
So yeah. As part of the community aspects of all of this, Stacey is we want, as you know, you just asked, you know, we're making money. Of course, there's markups between, you know, what we, you know, what it sold for, you know, what we pay, and we're trying to give a lot of that right back to the community. So we started an affiliate program where if affiliates want to go ahead and sell for us, they can easily sign up on the website, and they'll get a piece of whatever is sold out there. So, you know, that's one of many ways that we're trying to get the word out and keep the money in the community. And maybe, you know, one of the things to mention as well here, Stacy, is we don't want to limits the marketplace in any way to products. We're already talking with diabetic coaches out there. We talked with somebody just the other day that does lessons, or rather gets together kids groups,
Celeste Littt 25:56
right social groups for diabetic children.
Adam Littt 26:00
Yeah, and we've already talked with people that work with type one, diabetic groups for travel as well, you know, after the whole COVID thing is over, we like to get into all of these things. So you know, people can come to one side and say, you know, hey, I could travel, I could send my kids who grew up or maybe I need nutrition counseling or fitness coaching. And I could buy a set of CGM patches at the same time if I need those.
Stacey Simms 26:22
And Adam, how are you doing? You mentioned you're using an Omnipod, you've got a Dexcom. So it sounds like you're, you've come quite a long way from worrying about checking your blood sugar once or twice a day.
Adam Littt 26:32
Well, I've got a handy two Litter there, right, just in case No, I, I don't know. I was born with a very obsessive personaLitty, Stacy. So
Celeste Littt 26:40
I have to admit he does do well. That's nice to hear.
Adam Littt 26:43
I tend to keep pretty good control. I want to say that part of my retirement for my workplace is probably going to have to be annuitized turned into lifetime income Stacy, I intend to live till 150 just to get all of my money right out of that workplace.
Stacey Simms 26:58
Very nice.
Adam Littt 26:59
You got it to God, it's so I tend to do okay, I'm pretty regimented. I know you know what I eat and what it does to my blood sugar is I live pretty boring lifestyle as far as food, I put my energy into business and and the kids who run me relatively ragged. Thanks for asking. Sure.
Celeste Littt 27:17
I actually I have to say he, he has simplified my life because he does eat almost the same meals for breakfast. And for dinner. And lunch is our main meal with his protein at lunch. So I can't complain so much. He actually does keep things very simple. For me.
Stacey Simms 27:34
That's the difference of having perhaps a husband with type one and a son. As we were saying, for the interview started, I'm not exactly sure what my son is eating what hour of the day, especially with virtual school. Chinese who to two o'clock in the morning.
Unknown Speaker 27:48
That sounds like our tweets, actually. Yeah. That's what they went through last night.
Stacey Simms 27:53
Adam and Celeste, thank you so much for joining me, it's great to talk to you and learn more about this. I'll link everything up so that people can learn more and start snooping around the website and maybe contacting you if they have products. We have some very creative people in the audience as well. But thanks for sharing your stories.
Celeste Littt 28:08
Thank you so much for having us.
Adam Littt 28:10
Thanks so much for your time today. We really appreciate it.
Unknown Speaker 28:18
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 28:24
Lots more information. As always, at the episode homepage, just go to Diabetes, Connections COMM And I like to say every so often, if you are looking for a previous show, or a topic that we covered, if you go to the website, I have a search box on the upper right hand side, it's a really robust search, we have 365 episodes. There's a lot of stuff out there. If you'd like to hear something, many of the newer episodes have transcripts, not the older ones yet we're working on that. But it's just a really easy way to go through what I hope is a good source of information and sort of what I kind of call it a snapshot of the history of the diabetes community for the past five, almost six years. I'm certainly not exhaustive, but really good snapshot of what's been going on in our community since 2015. So definitely check that out at the homepage. Tell me something good is coming up. We have a teen and young adult edition this week.
But first Diabetes Connections is brought to you by Dexcom. And I just want to take a moment to talk about control IQ. This is the Dexcom G6 Tandem pump software program. When it comes to Benny's numbers. You know, I hardly expect perfection. I just want him happy and healthy. I have to say control IQ the software from Dexcom and Tandem has exceeded my expectations. Then he is able to do less checking and bolusing and spending more time in range. His last three A1Cs were his lowest ever they keep going down. This isn't a teenager, the time when I was really prepared for him to be struggling. His sleep is better to with basil adjustments possible every five minutes, the system is working hard to keep them in range. And that means we hear far fewer Dexcom alerts, which means everybody's sleeping better. I'm so grateful for this. Of course individual results may vary. To learn more, just go to Diabetes, Connections comm and click on the Dexcom logo.
I went looking for good news stories in a Facebook group that is frequented by parents of teens and young adults. And I've got some really fun stories to share with you. Catherine says Noah is my type one spectrummy 16 year old he had his best report card since third grade three A's and a B plus. He's on new meds new therapist, a new school also doing remote school. So it's quick with reduced social anxiety, fewer distractions and no papers to lose. He actually likes school this way. I gotta say, I know this year has been very difficult, but remote school has been a boon for many kids. I don't know what we're going to do when things go back. It's not for me to say but it would be really nice to figure out a compromise here for some kids like this that it's really working well for. Tammy says my son Cole is a sophomore in college. He was diagnosed at age three and a half. He's now 20 he serves he rock climbs he traveled to Cabo. He's MDI and uses a Dexcom he ran on club teams. He was a varsity runner in track and cross country. Tracy posted about her daughter Sophie, who was diagnosed at age nine. All she posted first was a really cute picture of her daughter saying she finally got her job at Starbucks. So I had to say, Is there more to this story? I do not get it. So Tracy wrote back and said she is a junior in high school and enjoyed bagging groceries at Publix. But her main parents made her quit due to the pandemic. She has attended virtual school since last year. But missed working. She discovered Starbucks was safer, because they only have a few people working there at a time and it's mostly drive thru. It took weeks of email and calling and follow up work to make it happen. She just turned 17 on Sunday. So that's the story. And then Jessica writes in my 17 year old Trenton played in all three games at their state basketball tournament. He's their ninth guy, he even scored a basket. And she posted a really cute picture of Trenton with his parents, I'm going to grab these photos with permission and put them into the Facebook group because they're really fun, especially this one, I have two more good news stories for you. They're very different from one another. But this one is from Alex. And she writes, I was born and raised in Oregon. But I've lived in Argentina since the 90s. Our daughter was diagnosed a Litttle over two years ago. And I learned that in Argentina, they have a diabetes law that guarantees access to insulin strips and all necessary technology for diabetes care as a human right. This love is achieved by a group of moms in 2013. While there are gaps in the system, there is a framework within which you claim access to what you need at a public hospital. The psychological relief she writes, this law provides brings me no end of comfort. And I love that it was achieved by a group of moms. This is the photo of when Congress approved the law. And this is a great photo of moms cheering and hugging and crying. And there's one gentleman in the photo as well. I will put that in the group. What a great story. I mean, wherever you come down on the side of access and insulin for all I know there are different poLittical views. That's fine. You've got to really believe that the psychological stress of trying to afford this stuff is heavy on many, many, if not most people's minds. And I will leave you with a really fun one. And I don't know if she knows that this is kind of an anniversary. So here's the story. Leslie, who I have known for years, you may have heard me tell the story about when Benny was very Litttle another Litttle boy was diagnosed right at the end of Gosh, I'm getting old now was at first or second grade, I want to say was the end of first grade. And Michael and Benny talked it over and everybody felt better about it. But Michael and Benny had also played baseball together and Leslie posted a photo of Michael Vinny no longer plays baseball. He played lacrosse and then he's into then football and now he's he's really into wrestling. But Michael stayed with it and it's done really well. And she posted a photo of Michael as an umpire. He is working as an umpire and the picture is partial gear. This kid you can't even see him. He's like buried in the equipment here. And she says he really enjoyed it. calling home plate is more fun than the basis I have a new appreciation for the discomfort ups must be at games after the many layers required to put on and I said it was an anniversary of sorts because it was this week. It's last week as you're listening. But this week when Leslie sent me the photo that Michael and Benny and another Litttle boy Parker, all played in a baseball game together two teams. This was our Litttle town baseball league for elementary school. So a couple of towns I guess, but two teams and three boys with type 1 diabetes on the same game, and it showed up in my Facebook memories, which is how I know so let's Thanks for sending that in. Thank you all for these great good news stories. This is always my favorite part of the show, send him in, you can email me Stacey at Diabetes, Connections, comm or post them in the Facebook group.
Before I let you go big thank you to jdrf Desert West, which includes chapters in Arizona, New Mexico and Nevada. I participated in their type one talk last week, and I really appreciate you have me out to talk with the world's worst diabetes Mom, I am looking forward to an event with my local chapter, which I don't even know how big my local chapter is anymore. Maybe it's North Carolina, South Carolina and Virginia, I think. But at the end of April, well, April 23, I will be hosting trivia, I'm very excited about this, we're gonna have a big online zoom, but play along trivia. And if you'd like to do something like that, I am more than happy to host it for your chapter, your diabetes group. If you've ever seen my silly game shows or listen to my game shows that I put out here it's not dry trivia. We're not quizzing people, we're not going to do math problems on bolusing. It's lots of fun diabetes news. But you know, in a, I'll give myself credit in a comedic, It's lots of fun diabetes news, but in a fun, interesting, family friendly kind of way. So I would love to do that get in touch. Let me know if that's something you're interested in. You can play over zoom. Everybody needs a separate app on their phone. It's a Kahoot app that lots and lots of schools use. So your child probably already has that and can set you up if you don't have it yourself. Alright, lots of stuff coming up classic episode in a couple of days and we are back to our interview shows on Tuesdays. So please join me then. Thanks as always to my editor john Kenneth from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here soon until then, be kind to yourself.
Benny 36:51
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
We can't wait to enjoy live theater again! That made us think about some of performers we've spoke to over the years. Maddy Trumble performed as Mary Poppins during that national tour and has also played Elphaba in Wicked. She was in the original Broadway production of Newsies, and many more plays and musicals.
Maddy was diagnosed with type one as a kid, and always knew that she wanted to be a performer. Maddy gets real about the cost of this type of career - she's had trouble with health insurance as its tied to constantly getting performing jobs. And we catch up to her to find out what her life has been like since this original interview and during the pandemic.
This interview first aired in November in 2016.
Check out Stacey's book: The World's Worst Diabetes Mom!
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Episode transcription (rough transcript, 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 0:14
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:20
Welcome to a classic episode of the show. As always, we aim to educate and inspire about diabetes by sharing stories of connections with a focus on people who use insulin. Our classic episodes are a look back at some of the people's stories and research we were talking about at the very beginning of Diabetes Connections back in 2015, and 2016. We have a lot of new listeners since then, chances are you haven't gone through all 360 plus episodes. So I like bringing these to you with an update on what's going on.
So I first spoke to today's guest, Maddy Trumbull back in 2016. And I had forgotten why I went looking for a Broadway play person in the first place back then. Well, it turns out, we had just seen Newsies, the Broadway touring company, here in Charlotte, and Benny and Leah, my daughter, we were all talking about how athletic a show that is, if you haven't seen it, and there's, you know, the original movie, certainly, but they made a movie out of the Broadway show. And that is really, really worth watching. It is not only singing and dancing, there's a tremendous amount of gymnastics. I mean, the choreography is, it's incredible, and it's exhausting. It's nonstop action. So Benny said to me right after the performance, he said, I wonder how you would do a show like that with type 1 diabetes? You know, he didn't say like, could you do it? His question was more like, how do you do that? How do you manage it? Which as the mom, I really liked that question. So I thought, there's got to be somebody we could talk to about that. Right? people with type one are doing everything. So I put out some feelers and we found Maddie Trumbull. She was actually in Newsies. And there's lots more to her story. And I'll give that to you in just a moment. But first, this episode of Diabetes Connections is supported by inside the breakthrough, a new history of science podcast that explores the idea of a eureka moment. its historical wisdom, mixed with modern insight, sort of a mash up between a history show and a science show. And it's funny, and it's entertaining. It's really well done. The latest episode takes a look at who takes part in psychological studies, you're the studies that are looking at human behavior that's supposed to be universal, but it turns out most of them only studying a particular group of people. That turns out to be anything but universal. It's a great episode full of surprises. I love this show. Search for inside the breakthrough anywhere you listen to podcasts, you can find it wherever you found this one. This podcast, as you know, is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Did you see the national tour of Mary Poppins or maybe wicked? Or maybe Newsies on Broadway? Then you have seen my guest Maddy Trumbull actually played Mary Poppins in that national tour. She has also played Elphaba, the Wicked Witch of the West before she was the Wicked Witch of the West that said wicked under all of that green makeup if you've seen that show. And as I mentioned, she's been in Newsies on Broadway as well. She was diagnosed with type one as a kid, she always knew she was gonna sing and dance and be a performer. I was really excited to talk to Maddie about you know how she does all of that and travels. Again. This interview was taped in 2016. And of course, the last year has been difficult for everybody. But when you think about live theater, it's just not happening. And Maddie I reached out to her and got an update. She says she lost her insurance when Broadway shut down. And she did she was very honest, it wiped out her savings she was paying for Cobra. So she said I wasn't willing to give up her pump and her Dexcom. We actually talked about that at the time about how difficult it was to get insurance when you're not performing steadily. So it was already difficult back in 2016. And it's gotten much more difficult in the past year. She does say I'm okay for now. I'm living in Chicago with my boyfriend working at a bakery waiting for my industry to reopen. And Maddie, I will ping you when things go back to performing and stage shows are happening again. Let's catch up. And boy would I love to come see you. So here is my interview with Maddie. And I'm calling her Madeline at the beginning for some reason. But here is our interview from five years ago. Natalie Trumbull, thank you so much for joining me today. I'm excited to talk to you.
Maddy Trumble 4:40
Oh, thanks for having me, Stacy.
Stacey Simms 4:42
I have so many questions about performing and what it's like. But let me back up to more of the beginning of your story. Because you grew up with type one when were you diagnosed? Yeah,
Maddy Trumble 4:54
I actually was diagnosed
technically on the first day of kindergarten. So
My dog shot had just been diagnosed. I don't know how I can't really remember I was four. My dog had been diagnosed with diabetes that summer. My mom has a PhD in child psychology. So she This is before the internet, they had all these, you know, medical journals. And you had done lots of research on diabetes bushi knew, you know, the symptoms, like going to the bathroom lot and being really thirsty. And I remember, we went to a friend's birthday party at it was like in a park and the bathroom was like up a really long walk up a really steep hill. And I just remember I went to the bathroom. And of course, like two hours, like six or seven times, I remember walking up that hill. And I remember that was when my mom was like, I think Celine may be up so when I went to the doctor to kind of get all your shots and tests for when you start school. And I was like, Can you just throw in a type 1 diabetes test and so confusing. I found out on the first day of kindergarten. And luckily my blood sugar was not so high that I actually didn't have to be hospitalized. I think it's pretty, as I've heard, it's pretty unusual. But that was the first 15 minutes for that. I just celebrated 22 years. Wow, man. I mean, diabetes. Yeah. 22 years. I'm,
Stacey Simms 6:27
what was your dog's name? That was fast. They went by fast.
Maddy Trumble 6:30
Oh, the document was shosh it's um, it's, it's, it's some other language for there. I can't remember. My mom is a fuzzy, hippie. hippie. We're from Berkeley, California. Yeah. shosh. So what was it that
Stacey Simms 6:48
was it funny to have a dog with diabetes and a kid with dijet confuse your friends at all?
Maddy Trumble 6:54
No. Well, we used to, like, you know, we used to do our shots together. And I would give shosh her shot. And then I get my shot. It was kind of cute. We were bosom buddies. Yeah. I can
Stacey Simms 7:07
imagine from your perspective, that was pretty helpful in a way. I mean, you had a buddy.
Maddy Trumble 7:11
Yeah, definitely. I'm like, yeah. I mean, it's so hard to remember. But I do remember giving our shots. And then I think I was I was giving myself my own shots. And I like after a couple of weeks. You know, I know that takes a lot of kids a long time. And I think that made it a little easier. But I had, you know, I've been given my dog her shot for a little while. And so yeah, it was like, I think it made the transition a little easier. in a weird way. But that's fun. Yeah, I don't think about that often. And my dog having diabetes, I completely forgot. Yeah.
Unknown Speaker 7:51
What kind of dog? What was shosh?
Maddy Trumble 7:54
Oh, gosh, she's a big month. She was big and like really big and had long black hair? Not quite sure.
Stacey Simms 8:01
Um, well, for is very young to be diagnosed. I mean, I understand that you don't have a lot of, you know, memories other than going up and down that Yeah. Do you remember growing up with type one? It's hard to ask again at that age, if it changed anything for you. But did you accept it pretty well? Do you? Did your friends do okay with it?
Maddy Trumble 8:23
Yeah, I yeah. It's tough to remember. I think I did. I never saw it. I remember that when I was diagnosed, I was the first time I remember at least seeing my parents cry. And I remember thinking that was weird because I didn't know what the big deal was because I was just like my dog. But I and I, like I said, I started giving myself my own shots for right away anyway, I don't think I ever saw it kind of as a as a disability or something I had to deal with. I think I kind of saw it as more of something that made me special. And like every summer starting that when I was five that you know, the next year, we went to diabetes camp, we went to a family camp for a few years. And so that was always like, not a good thing. But it you know, brought opportunities and I met lots of friends that I wouldn't have met if I didn't have it. Yeah, and I don't really remember from being kids the bad times, which is good. You know, that kind of came later. Like when I became a teenager and started having some denial that disease would never go away, which is really, I still have a hard time dealing with that. But when I was a kid, it was like what am I doing on shots and my friends thought it was cool and all my friends wanted to learn how to work and then when I got a pump in middle school, my friends all wanted to learn how to give my money Insulet in case I know in case I ever needed them in an emergency. There's always a kind of an opportunity for i don't know if i You know, as a negative in my life, that kind of came later, I totally understand that my
Stacey Simms 10:06
son was diagnosed very young at age two, and we're just getting now to the point where he's, he's in middle school. And he's kind of like, you know, used to be diabetes. And I love my friends from camp and, you know, I just yeah, natural for a teenager to be excited about it would be a little different, in a way.
Maddy Trumble 10:25
Yeah, it's definitely like, if it gets old, you're like, Oh, this isn't going away.
Stacey Simms 10:31
So when did you know you wanted to? When did you know you were interested in theater? Is that something that you always remember? Or did something happen when you were a kid to flip that switch?
Maddy Trumble 10:42
No, that was always my dad was an actor. He My dad is my dad is deaf. And so he kind of became an actor, kind of by accident. He was not never went to school for it. But back in the 80s, when Children of a Lesser God was on Broadway they needed there's one. There's one character in the show who is deaf, but needs to have very good speech. And my dad speaks really well. It's really good speech for a deaf person. And anyway, so they, I can't remember the exact story. But somehow he fell into this Broadway show. And he lived in New York for a while and, and he was like a lover of musical theater, and so was my mom. So we just like always had it growing up. I remember my first one. I mean, I was obsessed with the Wizard of Oz, and all the old movie musicals. I was little. And I don't think it never was like a decision was made. And then my mom, I'm from the Bay Area from Berkeley. And there's a ton of great community theater there. And so my brother and I, just one day, my mom was like what we should you should go audition for Annie Get Your Gun, which, you know, has kids in it. And we went an audition and I think singing in the rain with the I had an umbrella as a prop. Yeah, and my brother and I, we both were. Both were cast in the show. And kind of that's sort of what changed it. I was seven, and he was not. And we both really fell in love. And then my little sister too, eventually started doing it. And she's still acting out. She's on the sound of music tour. Going around America right now. So yeah, I was always in a family is there? We all did it. We all did shows together. made it easier for my mom, she has like one place to dry. That's cool.
Stacey Simms 12:35
So you have three have a brother and sister.
Maddy Trumble 12:38
Yeah, there's the three of us. Yeah.
Stacey Simms 12:40
I have a very ignorant question. But you said your father loves musical theater. It's hard for me to understand how someone who's deaf can have that sort of appreciation. Can you can you try to explain some of that to
Maddy Trumble 12:52
me more? Yeah, I remember him talking about. I mean, he's an actor and he and to us musical theater is so much about the music, but if you've watched he like loves Jim Kelly and Fred Astaire, and he loves finding crowds, Barbra Streisand, because she's such a fantastic actor, and she, her hands, her fingers and her fingernails. I don't know if anyone loves Barbra Streisand as much as I do. But she is the longest fingers and uses her hands in a really interesting way. And so my dad, it's all visual for him. You know, he can't hear the music. But you know, engine Kelly is so fun to watch. You could watch him without music, and it would still be entertaining. I think it's like the visuals in musical theater. And he was an actor. So we talked about what to do with your hands and how hands are really important, obviously, for him to that's how he talks. But yeah, so is the visuals in musical theater. I think more for him. And this style of acting, I suppose also, because it's can be a bit more exaggerated and lots of which is something that would speak to him, I suppose. I've never asked him about that. But he was really into Gene Kelly singing in the rain was like another one of my favorites. Oh,
Stacey Simms 14:12
I've seen that movie a million times my sister and I, we had we had in the olden days, we taped it off of PBS one time with our VCR. And we went over and over again. And when I see it now I wait for the pause, because there was a pledge drive when we taped it. And so in the 40 minutes or so they were interrupted for 20 minutes. So I know where those pauses come at is such a
Maddy Trumble 14:41
fun drive. Oh, yeah. Yeah.
Stacey Simms 14:43
So. So tell me a little bit about performing though, with type 1 diabetes as a as a teenager as a kid. I mean, I imagine you had to do a few things to help yourself out. Can you talk about that?
Maddy Trumble 14:55
Yeah, I'm not really. I'm trying to think of A story from when I was a kid, I'm not really remembering. The only thing I remember, I just, I got a pump in the summer before sixth grade, which is when I played anime and anime. And I remember having to do that and having it show through my costume. And that was honestly that for me as a kid again, I've been you know, no big deal. That was the biggest deal. I remember thinking. So you know, when you are, when you're performing, you usually have to wear a microphone as well. So it's like you have one extra machine on you. Anyway, so that's what I remember. I'm trying to think of something that happens maybe that I,
Stacey Simms 15:48
that's okay. I'm just curious. Did your parents like when you're performing? Do they want you to check your blood sugar before? Did you have snacks backstage?
Maddy Trumble 15:56
Or do yeah, that kind of thing? Yeah. Yeah, it's tough one. Because when I, I've been lucky enough to get to play a lot of these in shows and who don't really leave the stage. I'm just thinking, like, when I played Mary Poppins. I also have no problem I kind of really rely on you have a dresser who kind of needs you backstage? Every time you're off stage to give you water and and you know, if you need to change your costume or fix your makeup, they're kind of there. But you're never really offstage for more than no 20 seconds. Wow. So I'd always Yeah, so I've been you know, they always had glucose tabs or juice. And I would always, and when I was a kid, too, I'd put, I'd have like a little box on either side of the stage and in my dressing room. And yeah, cuz it's really, I mean, it's scary to be low, no matter what. But it's really scary to be low. And you're in the middle of the show and doing a dance number. And I've never had any major. Anything. I've never been so well. But there's been a couple times where it just gets it gets a little scary. And you can't leave the stage Really? Yeah, I remember one time Mary Poppins we were doing steppin time, which is this huge, like 12 minute long tap numbers. And I was starting to feel low, and then it kind of really hit me in the middle of that ever, which is a really, really bad time. And then you don't leave the stage again for another 10 minutes. And I've never, I've always a thought every time I do a show like I'm going to have there's going to be a point where I leave the stage or I'm going to have to stop and it's just going to have to be okay. Because it's just gonna have to be okay, because that's the most important thing is not the show is my health. But I've been lucky I haven't had to, do you
Stacey Simms 17:47
ever think about keeping, like glucose tabs in your costume? Because, you know, I know Mary Poppins can't be eating in the middle step in time, but you could like sneak it. Yeah, something like that.
Maddy Trumble 17:58
No, I never did. That's a good. There was always something. I guess if I if I'm in if I'm ever in a show where I can't leave the page for a long time I will 100% have to have something But Mary Poppins was that that one scene was strange when I was low, because I was on stage for like 20 minutes straight. Usually there's, I could run off stage as I needed to. And there's always someone nearby. And you know, I always tell everyone on the first day stage management just so they know. And everyone's always very understanding. I'm always so curious about it. And I should come to rehearsals with like a brochure. It's on the literature. But I just tell them and they're usually Yeah, I've not had any crazy, crazy thing I've had to deal with yet.
Stacey Simms 18:52
Do you have a blood shock? Yeah. Do you have a blood sugar goal? And you certainly don't need to share specific numbers with us that you'd like to be in or range that you'd like to be in when you are performing at the beginning of the show?
Maddy Trumble 19:05
Sure. Yeah, definitely. I, I mean, normal for me is like a little higher a thing than most people's. I like using one and 150 and right before the podcast. I was 137. So I'm patting myself on the back. But definitely the before show, because the adrenaline and everything. It's so easy and just running around and I just did last year I did a vivo which is and I played Eva Peron, which is the lead and like she really, I mean, I left the stage a lot. But every time I was backstage, I was changing my costume and my wig. And so it was just really there was never a moment to sit down. Never a moment test my blood. So I'd like to start ideally, like around I feel like around 200 because my buzzer is not going to go up when I'm doing a show. So I'm going to go down. So that will be the ideal. Do you
Unknown Speaker 20:07
always have? Yeah.
Stacey Simms 20:08
Do you wear an insulin pump during the show? Still? You kind of mentioned that earlier. Just curious to do do you keep it on under your costume?
Maddy Trumble 20:18
Yeah, I do. I'm trying to think if I, I think I took it off for a veto, because that one was so short, the first act of like, the first and second act are both about an hour. And there were so many costume changes. And so it's so much running around. I think I did take it off of that one. We have Mary Poppins also, I think it would be different with costumers are so fantastic and can figure out where to place it. But with Mary Poppins I wore, there was no way anyone was going to see the Mary Poppins I had two microphones, because it gives you one, you use one, but then you have a backup in case the first one dies or goes dead because there's isn't time to change your microphones. So I have two microphones and my insulin pump, but no one saw because I had these huge dresses and a buffalo so they kind of I usually put them like in the like on the small my back. So no one's gonna see them because, but I'm trying to think if there's ever had a costume where I was worried about it being seen, I don't think so. I've been lucky to be very close in all my shows.
Unknown Speaker 21:24
Okay, yeah.
Unknown Speaker 21:25
What kind of pump do you use?
Maddy Trumble 21:26
I have a mini med. I've had a mini med forever. A mini med paradigm. It's purple. It's very pretty.
Stacey Simms 21:39
Do you use a continuous glucose monitor with it?
Maddy Trumble 21:42
You know, I don't know. But I have a girlfriend in New York, who I actually met in Chelsea Market. I don't know if you went there when you were there. So it's really cool to just like walk through market. There's the IMF. And we were in the bathroom until the market and this girl was like really beautiful red hair, and exact. And she had like a really cool outfit on. And she had the purple tongue, like, on the outside of her pants, which I thought was really cool. And because I never wear like you can never see my pump. It's always somewhere hidden. And she was just wearing it on her jeans or their cool outfit. And I just said I was like, Oh, I like your pump. I have the same one. And first of all, for me to start a conversation with anybody on the streets in New York is really unusual. But I'm so glad I did. Because she was like, I just moved to New York. And I you know, I'm just wondering, like, Can I get your phone number and maybe we can hook up for lunch. And it turned out that we had a lot of friends in common because she's also in theater. And anyway, she's like, become my girlfriend. What was I saying? Oh, I just hung out with her the other day. And she just got a Dexcom. And she has a an Apple Watch. And she was just showing me she was like, Look, I'm just looking at my watch. And it tells me what my blood sugar is. So I do not have a continuous glucose monitor. And my mom has been trying to convince me for years to get one. But I just always been weird about having a second machine attached to me. But it's so clear. My friend Claire was showing me it's so small and I don't know, I'm gonna have to really think about it because it seems like kind of a really cool thing.
Stacey Simms 23:18
Well, we've used our since for three years now. So if you would like to know the opinion of someone who's No, he was nine when he started. So he can you know, I do I think that the there there are. had to say this. I really Okay, so first thing is I'm the parent, right? I'm not the person with diabetes, right? So I of course love it, because it helps me take care of him in a way that finger sticks, you know, didn't give me the window that I wanted. But my perspective is not his you know, he likes it because he doesn't finger stick as much. And everybody uses it differently. And it's not labeled to not do finger sticks yet. But um, but that's really why if you ask him, that's what he likes it and it gets this mother off his back because I can just see his numbers. I don't have to ask him what's going on.
Maddy Trumble 24:11
Can you see that on your phone? Yes. Or Oh, wow, that's crazy.
Stacey Simms 24:15
Yeah, so he was right with the current Dexcom. He can have it on his cell phone or receiver. And that I can see it on my cell phone. And he is the one who wears the watch. He has a Pebble watch, which is a little less expensive than the Apple Watch. And he wears a watch so he can see it and it's more discreet for him in school. He doesn't want to pull out his cell phone. because nobody's allowed to have a cell phone at school. So he keeps his cell phone his backpack and then you can just look at his watch. But for us the best thing about the Dexcom is seeing trends, you know, because he's overnight his number, bananas because of puberty and everything else. And it That to me is the number one advantage is you really get a window. Yeah, you know, and I've already done a commercial for Dexcom in this podcast. So that's another one
Maddy Trumble 25:01
Yeah, I think it's something I definitely need to look into it. I have an appointment next week with my endocrinologist and Dave and Dave also want me to get I have a new one this year, but a new endocrinologist, he's been trying to convince me, I mean, it seems like a pretty cool thing. thing. I was just so hesitant, because what's also hard, I've had diabetes for so long. And I've kind of been doing the same thing the whole time. And the thought of having something else come in and kind of interrupt What I know is scary. But, but also at the same time I've seen technology grow. Because in the last 20 years, that's, that's when I first started my first meter was 45, it might have been 60 seconds. I mean, 60 seconds, and like a huge drop of blood, and then 45, and then 30, and then 15. And now five, and you know, then I got the pump. And it's certain point and so, but for the last 15 years or so I've been I've been doing the same thing. So that's what scares me. But I really should welcome it. And it's exciting. And sometimes I don't always feel when I'm getting high. And I'll test and I'll be shocked. So I think that would be a good thing to have, because it was kind of right, you know, yeah, I have alerts for you as well. We love it. But
Stacey Simms 26:19
at the same time, I totally understand what you're saying. I mean, you're you know, I have a lot of friends, who it's funny when you when you have somebody in your family who's diagnosed suddenly everybody comes out of the woodwork and you realize that you knew people. And I have a friend who Yeah, he tested one of the first pumps when he was in middle school. And it was a painful process. I mean, this is 30 years ago. So he it turned them off for pumps forever. And then he's got a pump in his 40s. He didn't want he just didn't want to do what he was doing fine control and he loves it. But you know, if he didn't, he will go back to what he was doing before. So you don't. Here's mom's advice. You
Unknown Speaker 26:52
do what's right for you. You know,
Stacey Simms 26:54
go check it out. Don't feel pressured. But yeah, cool. Is it that you made a friend? It's always funny when you see people with a pump or checking. Because you know, sometimes you don't want to be weird. But it's so cool that you are able to say something nice, great.
Maddy Trumble 27:09
Yeah. I feel like I see them all the time on the subway. And I never, I never Yeah, never want to say anything. But some reason she we looked like we were taught from the same cloth. So I yeah, I'm glad I said hi. And maybe I will again next time I see the Father.
Stacey Simms 27:27
So how did you get to New York? I mean, I know it's a long process. But as you mentioned, you're from you're from Berkeley. Yeah. And you were performing as a kid. But you know, a lot of people try to make it in theater. What was the I mean, not the whole process of
Unknown Speaker 27:42
how did you do it?
Maddy Trumble 27:45
Yeah, I grew up doing theater and my mom is so incredibly supportive. It's I I don't know how she and she loves theater. And it was never a question of, should I do this or anyway, so I found out I think we were in New York City. When I was in high school, we were seeing some shows. And I started noticing that people and their buyers and playbills were listing where they went to school. And I think I didn't even really know that you could use a major even got a BFA in musical theater, and I didn't know that that you could even do that. I think I kind of figured you had to go to NYU for acting or, you know, I didn't know any better. And so I was seeing BIOS, and I was seeing all these people. So many people have the University of Michigan in their bio. So I went up to a couple people after the show that season door and chatted with them about an actor's are so nice. And you know, they talk to you about the schools they went to. And so I looked into Michigan, they had a summer program for rising seniors. So the summer before my senior year, I did a three week musical theater intensive with the head of the University of Michigan Department of musical theater. So I did that. And then I love the school. I love the faculty and I audition, and I think three of us on this on our program got into the school. So I went to the University of Michigan for musical theater, and I did that for four years. And that was a tough four years. Because I've never, I had never really had any sort of training or I took voice lessons here and there and some acting classes, you know, maybe every other year, but I never I just did shows because it was fun. I just, I liked to be in plays and to all of a sudden be in a university setting where I was being graded on my acting and my singing and dancing was so strange to me. So I kind of had a hard adjustment and you know, it's an incredibly competitive environment. You know, there's there were 19 people in my class. Here's a group of like, 100 kids and everyone wants To be on Broadway and everybody wants to get the part in the show. And yeah, it was definitely a hard it was a hard. Four years. I think that that's what made me grow so much. And anyway, so I did four years at university. And then I did we did a senior showcase, which a lot of musical theater programs do, they put together like a 45 minute show, and everyone gets a couple minutes to kind of show themselves and what they do best. So some people in my class dance. Some people did like, you know, a little song and dance on people. I did I just sit there and saying, because that's what I do. And a bunch of industry people come agents and casting directors. And so from that I got an agent. Most people find was an agent, but then also from that, which doesn't always happen, but I got an audition for Mary Poppins, the casting director of Mary Poppins came to the showcase. And he actually called it up like pretty much all the girls from my class, went in an audition, and I had an audition and it went fine. But then I went away for the summer. And I never heard anything, never heard anything. And then I got a call all of a sudden, I was doing a show in St. Louis, during summer stuff, and they said Hi, can you come in for a callback or Mary Poppins? It's this day, so I had to take time off from St. Louis and go to this audition, and I got, I got the cell, like, right away. They called me when I was walking out of my audition. And they said, it was Thursday. And they said, Can you start rehearsal when Monday, so So I started on Monday. So that'll happen. It's so incredibly fast. And that was I did a tour twice. I toured with Mary Poppins two times. So this is the first time I did it. I got so I don't know if it was luck or timing or something. But so I did that tour for six months. And then we closed and then I moved to New York City. So I moved to New York City kind of in a great spot. I had all these friends in the industry. And I've gotten to save up some money. And I lived with a girl that I had toured with. And I was really lucky to have a lot of people moved to New York City, they go for their senior showcase. And then they're just there and they have the like my little sister did that she went and she did her showcase. And she got an agent, and then she had to find a restaurant job and and somehow come up with rent money because living in New York is so expensive. And I was incredibly lucky that my Find New York journey kind of started off. And it also started off a little late. And it was cool that I got to go to New York and I had a show on my resume. So auditioning was a little easier. And yeah, I definitely was a very long winded story.
Stacey Simms 32:44
No, that was great. That was great. And, but but and then after you move to New York, you understudied and we're in a few other plays. Right? You were in Newsies. And you were in wicked.
Maddy Trumble 32:54
Yeah, well, so I'm trying to think. So I moved to New York, and kind of right away, I think I've been there for six months. And then I got Newsies really quickly. And I did that for a few months. And then I did Mary Poppins again. And then I taught again, and then I came back to New York. And then I did wicked, and I actually did the tour of wicked. And then I tore it again with wicked, and then I came back. So I've been in and out of New York, since I got here. People asked me how long I've been in New York, and I feel like I'm lying to them. When I say five years. It's really not. It's really an often that long. The Yeah, so everything just kind of happened really fast. When I got really lucky, kind of right away. And then this, these last two years, I worked the I left wicked about two years ago, these last few years have been pretty slow, which has been tough to to deal with, because I had so much success so fast. And this is kind of right now I'm experiencing what most young actors experience in New York, kind of like, I go to audition pretty much every week, and they go well, and there's always some reason you don't get it really stupid. Like the last one, I was too tall. For one before that I was too young, which is good. At least I wasn't too old. You know, I've never had to do with talent, and I'm still getting used to the rejection is tough. I'm getting better at realizing that it's really not about me, it's not personal.
Unknown Speaker 34:27
But let me ask you that.
Maddy Trumble 34:29
No, I was gonna say it's tough. When you're in New York with 1000s of other fantastic actresses. You can be as specific as you want, you know, you don't have to sort of make any sort of concessions. The casting directors are like, I want that person to have shorter hair, so that then they can find that person. So, you know, it's really tough, and there's so many talented people, so I'm just really lucky that I'm in a spot where I know I have girlfriends and boyfriends who aren't even. They don't even they aren't even getting the audition. They want, you know, they're like, a whole step further behind me in a way, you know, because I'm the least, I haven't been getting the audition. That's like, that's step one. And that's really tough to even get the audition. Because if you think about, there's 1000s of people, and you know, hundreds of agents submitting their clients for one audition, so they can only see 10 people. So the fact that I even get to audition is like a great feat. So I'm at least thankful for that. But I was like a job that
Stacey Simms 35:29
well, and that leads me to what I was going to ask, which is, yeah, as a parent of a child with type one, I'm listening to this. And I'm thinking, how is she paying for her supplies? And I'm trying to do the math, are you and I, this is a super nosy questions, I don't have to answer him. Are you? Are you on your parent's insurance? Like how do you do this?
Maddy Trumble 35:49
Okay, so I was on my parent's insurance. But then I turned 26. Right. So that was last year. So then all of a sudden, so I get my health insurance, we have fantastic health insurance, that we get it through the union through the actors equity Association, and the insurance they give us is so great. It's incredibly affordable. And the diabetes supplies are actually like, we have a really great deal with them. And I don't really pay anything for my insulin or my strips, which is kind of agnostic. And anyway, but you get I get up to my union. So you have to, they give you insurance, based on the amount of weeks you worked in a year. So this year, I have literally worked five weeks, and you need 11 weeks to get six months of insurance, or 19 weeks to get a year. So I am losing my insurance January 1, which is super scary. And it just kind of adds a whole other element. So when I go into these auditions, I have to stop doing this. But I keep thinking like the stakes are so high for me for so many reasons. Because I'd love a job. I'd love money. But also I really just need to work so I can keep my insurance, my fantastic insurance. So thank goodness for Obamacare and not being able to refuse people because of you know, pre existing conditions, because I don't know what I would do if that was the case. But yeah, scary. So January 1, but I don't know what I'm going to do. I'll have to figure something out. But yeah, I know, it's been incredibly affordable the last few years, which is great. And then I think January 1 that will change. Super disappointing. Yeah, I yeah, it's that's kind of always been like me, you know, I watched the week's take away this last year, I would watch them go and every audition I'd go to I'd be like, okay, it starts the state and then finishes the state. So if I get it, I'd have enough weeks to Yeah, but um, yeah, no, I, I lost it this year. So that's kind of been tough. And that more than anything else has made you kind of reevaluate if this is the right thing to do, because I shouldn't I don't know, shouldn't it shouldn't be about that. When I'm auditioning and singing and acting. It shouldn't be about getting health insurance. But that's kind of what it's been about for the last year. And it's just Yeah, kind of stressful. And
Stacey Simms 38:15
it's such a common, unfortunately, such a common thought among people with any chronic condition. And I hear all the time in the doors community, that people are staying in jobs, they don't want, you know, where they're, they're working for money that they need to only go to insurance. And yeah, that's that is tough stuff. Yeah, let's talk a little bit. I don't want to completely change the subject here. But okay, and this is another nosy question. So since you're just you haven't, you've done a lot of additions this year, but haven't had study theater work. Did you? Did you take another job? Did you take a waitressing job? That's kind of stuff.
Maddy Trumble 38:49
Yeah, so I don't think I've been super smart about it. I have a lot of money saved up from touring. Because when you tour you get a per diem. And your paycheck, you kind of just get the pocket your paycheck, which is pretty fantastic. So I have like a lot of savings from three years of touring. So I've kind of been living off of that. And it's tricky, because every time I have an audition, and have a callback, and then have a second and third callback, which happens all the time, I'm like, Oh, I'm gonna get it. So I keep putting off getting a real like high paying sort of side job. But yes, I have. I do like I have a little teeny tiny part time job at soulcycle, which is fitting studio, which I loved so much. But I'm kind of in the process of thinking about what else I should do. I used to take headshots, which I take pictures for actors, which is kind of a great thing to do on the side for money and I haven't done that in a couple years because I don't know I just have not sure why. But I'm thinking about doing that kind of just to make some extra money now to pay for my health insurance. And I luckily have not had to waitress yet. I think I would be pretty terrible at it. I'm going to avoid that it's kind of the best. That's the best way to make money. I mean, my sister was doing that before she left on tour and was putting saving money in the bank. But she's working really hard. And I would I just I don't I would not want to be a server in New York, I think it would be a tough job. New Yorkers are tough. And especially when they're eating, they want things to be perfect. Standards are really high. I'm not sure I'd be good at that. That's funny. And I've been little side jobs. Like I do little temp things, and I babysit sometimes. And but yes, I've had to kind of pick up some stuff to make some extra money. Because, yeah, see,
Stacey Simms 40:51
I heard from a few people, I put it on on. I put on Facebook that I was talking with you. And you've actually answered most questions that people had, which were about, you know, performing with Lowe's and, you know, hiding glucose and things like that, and would pump you Yeah, but I think a lot of the kids look at this and think, Wow, what a glamorous career. And I really want to do that. And listen, if you are you interested in theater, you are passionate about it. But I hate to say I'm glad to hear you talking about that. Because it's not a side of the working actor that we hear a lot about.
Maddy Trumble 41:22
No, that's not and it's not something I ever thought about. or even in college, you know, they say we'd have people come in and chat, but the people who would come in so they'd have masterclasses and, and lab with, you know, alumni, but all the ones who came in are the ones who are working consistently and live really glamorous lives and who make a lot of money. No one ever came in and said, sometimes you don't make money. And sometimes it's stressful. And sometimes you lose your health insurance. And sometimes you really get, you know, when you're going on. I mean, I haven't gotten and I pretty much had an audition every week, and gotten called back for a year. And now I haven't gotten anything for over a year. So that is hard. Just the rejection is really tough. Because I'm pretty good at laughing about it. It takes usually takes a day, I usually have to go to bed, I get really sad. And then I go to bed and I wake up the next morning. I'm like, okay, I can do this. Yeah, it's tough though. When you it's constant. It's constant nose. And that's tough. And I go back and forth between blaming myself because surely not my fault. But it's hard when you know you. And when you see all your friends kind of succeeding. And, you know, which is it? I hate that I hate comparing myself to them and feeling like I'm competing with other people. Because you're really I mean, you are, but you're not. And so it's tough. It's really tough. But that one is good. It's so good. So, yeah. David think that's Yeah, that's Yeah, got to be so normal and so awful in those groups when people are working and people aren't working. It's gonna be crazy. Yeah. Yeah. And it's funny, because we're all at a different place. Like I said, You know, I have girlfriends who like they would kill to be having the audition, but I have, but then one of my best friends, you know, just turned down at a Broadway show, because, you know, he's kind of at a different level than me. And he decided that wasn't really what he wants to be doing. And, you know, so that's his heartbreak is that he, you know, they wouldn't give him enough money to do the show he wanted to do. So, you know, I have a hard time sympathizing with that, but also have to realize that everyone's in a different days. Sorry, my alarm just went off. Anyway, so I just, you know, everyone is dealing with their own. Yeah, you know, and I have another friend who I just auditioned for him last week, he's, you know, supervising a show I want to do, or that I was auditioning for, and I didn't get it. And I, you know, texted him and I said, I'm sad. I didn't get it. And I don't really know what to do anymore. And, you know, I can't catch a break. And he goes, Yeah, I'm not Angelou, I understand. I'm with you. I can't even get the auditions I want. And in my head, I like but I just, I audition for you. And but he's still, you know, he wants to be auditioning for other new Broadway shows, and he can't get those auditions and blah, blah, blah. So anyway, everyone's got their own heartbreak, you know, kind of no matter what level you're at, but then when it good and when I get to be playing my dream roles and getting paid to, you know, do like sing these, this music, music I want to say like when I got to play when I got to do a veto, which is like my dream role. And it's like, fantastic. And when I get to be recovered and people are so impressed with me because I'm in liquid, you know, then it's great, but then so that makes it worth it. I suppose but I'm kind of right now I'm kind of trying to decide. Just how worth it it is. Yeah. It's just tough.
Stacey Simms 45:09
Yeah, you're at a crossroads. That's really wild.
Unknown Speaker 45:11
Yeah, definitely. Yeah.
Stacey Simms 45:13
Well, am I interested to keep talking to you over the next couple years? Who knows what will happen? So this time of year, I was trying to think, and I'll edit this part out, but I will I may end up running this during right before Thanksgiving. So that'll either set up or take at this next question. So for many people, yeah, for many people, their their yearly or their biggest exposure to theater, is that Macy's Day Parade where Broadway performers, you know, walk down the street in New York, it's amazing. And they're every show has a musical number. And I DVR this every year and fast forward through nonsense and just watch the musical numbers. Have you ever heard up is that I mean, that's gonna be freezing and hard work, and You're up early. But everybody's always smiling. And it looks like a lot of fun. What's
Maddy Trumble 46:06
that? Oh, no, I have not done that. Because I have not been lucky enough to be in a show that's happening during that time. But But I you know, it's such a little teeny tiny world we live in. So I'm friends with like, everyone who does those shows, and everyone puts her does the parade. Yeah, I heard it's pretty freezing. And they all look, they all look so happy. But I think it is kind of like, that's a cool thing to do. When you're like, oh my god on a day to day parade. I that's kind of what this business when you get to work in it. It's kind of constant. Things like I I watched other people do this, and I was a kid. Like, and so that's pretty cool. You're like, oh, neither am I like Julian coming through. Yeah, yeah. So yeah, I think that's kind of what people are, like, out here. It's cold. Like, I used to sit at home, you know, every day, every morning. And, and like, I remember back in Mary Poppins, I got to play San Francisco. And I was like, I used to come and like, watch people. Like, I used to come and watch people on stage. And like, now little kids are watching me. Like, that's pretty cool. And like that's why that's like why you do it? I mean, you we do it because we love it so much not because it's easier not to have you get paid well, or it's like we'd love it so much. And I have always loved it. And like I think all of us if we could do anything else, I if I could do anything else, I would do it. But I don't really want to. So yeah, I'm still here. When you're
Stacey Simms 47:37
talking about performing for those kids, and you weren't one of those kids, once you know, watching the show in San Francisco, I know that you've met some kids after the show who have type 1 diabetes, more and probably elsewhere, what's that like for you?
Maddy Trumble 47:54
Well, first of all, they're also going to be better at taking care of themselves. And I am, I'm so impressed with all of them. They're super inspirational, because I what and it's cool because like I it is I never realized that I'm talking about it today that I didn't used to. It's not used to get me down, even before when it was harder to take care of it. Like in the 90s when it took 45 seconds for my, my, my resolve to come out. But I didn't used to like let it get me down. And these kids don't either. It's just something cool about them. It's something different and something they get to talk about and something that their friends don't have that makes them special. So it's always like, I think with anything when you meet kids who are like you are it's the same with performing like when I you know, every once in a while when I get to teach classes or kids who are actors, like they just took a song and they want it I don't do it because like, they want to make money or they want to win an award. They just do because they love it. And I think it's cool to like meet kids who, like remind you of you and remind you that like Yeah. Yeah, and it's but it's, it's cool, because I remember my role models. There was this like girl group called the punk girls, oh my gosh, I wonder what happened to them. They had like a CV and they all had diabetes. And, you know, I'm trying to think I didn't have any role models with diabetes. I didn't have anyone to look up to did what I did, who had diabetes, you know, like if they'll if they did it, and it was no problem for them. So that's kind of cool. I don't know that I fancy myself a role model, but I hope I can be. You are definitely Yeah.
Stacey Simms 49:37
I have. I have a I have a Facebook question for you. So Trish writes on Facebook, my high school theater major loves her meeting you Maddie and she wants to know if you have an education program for rising stars. I mean is there is there no, you went to college for this, but there is
Maddy Trumble 50:00
Do you mean at a college level?
Stacey Simms 50:01
I would think either a college level a summer program, you know, something that you recommend to kids get on the track.
Maddy Trumble 50:08
Oh, gosh. There's so many musical theater apartments now, so many more than one. I feel like there's new ones popping up all the time. I University mission was great. It's the faculty is kind of all changed now. And I'm not quite sure exactly how the department's being run. Oh, my gosh, there's so many I would say. And there's so many that we think we need to go to like, I thought I needed to go to Michigan. And obviously, I went there for a reason. But the I know people who go to smaller schools and who love them, and people who go to big universities and love them, I think it's about like doing all the research. Also, it's probably so easy. Now with that there's probably so many resources on the internet. I'd say do the research and visit if you can and see which works best for you kind of think it's like training programs like it's like classes. I have a friend who has a business who, oh, gosh, this is terrible that I can't remember it. I'll post it on the Facebook groups. He has a business where he takes him and he takes other like, Broadway folks with him and Broadway stars. And they'll go and travel to schools and high schools. And I know there's a couple organizations that do this. And they'll teach classes, and they'll perform for you guys. I did it one time, I went to a little teeny tiny, tiny town in Texas. They were doing Mary Poppins and I taught a master class. I think it's called straight out of New York, this is the worst answer ever. You're gonna have to add up just send it to me too. I haven't taken a class and so long, I probably should maybe it would be better my ambitions if I took a class. But yeah, you know, I wouldn't even know where to tell someone where to start. Gosh, I will think about that. And I will get back to that person on the Facebook page. That would be great.
Stacey Simms 52:05
How funny. There was also a question about, you must have a pretty crazy schedule, even when you're just auditioning, you know, you don't have a regular nine to five. So the question of how do you manage diabetes? Do you have a routine or a special diet or you know, anything that helps you out?
Maddy Trumble 52:22
The short answer is no. Which I'm constantly trying to be better and trying to. To find that routine. But yeah, it's tricky because every day is different. Some days I so I work at a gym, essentially. And we asked exam classes with somebody that has to be there at 530 in the morning. But then other days I like today I slept in and tomorrow I'll sleep in. And then the next day, I wake up at four in the morning. And so everyday is so different. Yeah, it's tricky. And I kind of I just test a lot, which is why I should get the Dexcom I test a lot and I try to keep up with everything. Yeah, there's it's tough when there's no routine. And as far as diet goes, I try my hardest to kind of I'm also vegetarian, which doesn't really have any effect on diabetes, but but I feel like I maybe eat more carbs than the average person because I joined me. So I'm I try to I'm pretty good at counting carbs. I will say got that going for me. I do a lot a lot of carb counting a lot of like, bolus wizarding on my pump to take out my guesswork, because my guess is pretty bad. But yeah, it's a constant, constant. struggle. I still get surprised by highs more often than I'd like. I'm not low often, which is good, I guess. Yeah, I always have larb always has me always have fruit with me too. In case I need it and but yeah, no, I there's a lot of growth to be done. And yeah. I'm glad to see my other eyes on the doctors equity because I guess they need their help.
Stacey Simms 54:13
Well, listen, I always think it's interesting when I talk to people like you because I kind of hear you almost like apologizing that you're not like a perfect role model. It's so funny. But you know, that's what this life is all about. I mean, there are people who are absolutely amazing. And you know, they have it they seem to have it down. But I like talking to people, too, who are very realistic and understand. I mean, this is not a game of perfect
Maddy Trumble 54:39
Yeah, no, it's not and I think goodness, but I ya know, I apologize all the time, but I always feel guilty about it, which I need to get over that part about it because it's hard for everyone. Even my girlfriend with a Dexcom the other day she was like, I was like 300 the other day and I don't know why that made me feel better about it. But I was She's super high and she has a desktop. So yeah, if and I had a girlfriend actually, who did wicked with me who also was a diabetic, which was fine. I never worked with him before. She didn't have a problem. She had a Dexcom. And she was had such unbelievable control. She's the most like, regimented, disciplined person I've ever met. And so for her a high would be like, if she was like, in the 200. She'd be like, Oh, my God, you know, that would be a big deal for her. She really made me feel like I felt like I was constantly apologizing to her. She made me feel like the worst diabetic. Not intentionally, I did that myself. But he was really great at taking care of herself. And she ate like paleo, and she counted every car and every gram of protein and calorie and pretty incredible to watch her take care of herself. She was really good at it. Definitely an inspiration. Yeah. I will never ever be like that, even if I tried my hardest just because I don't have that personality. But it was something to aspire to. Yeah, interesting. Well,
Stacey Simms 56:06
it doesn't sound like you're doing half bad. I mean, I know you're not working as much as you'd like to. But it's been fantastic talking to you and learning about this life. That's very cool. So keep us posted. I might see I didn't even ask you for theater tickets or anything. I was very good.
Maddy Trumble 56:23
I wish I can give you some I want some to
Stacey Simms 56:27
Oh, I know what I forgot to say. So I just wanna let you know. Yeah. So the reason I wanted to talk to you was over the summer, Newsies came through Charlotte, and where we live. And so we all went to see it. And my son who has type one, we were watching it. And if you haven't seen it before, it's a very intensive dance show. I mean, the choreography is amazing. It's dance and gymnastics. And it's incredible. And he said to me, I wonder how somebody with type 1 diabetes would perform in a show like that? Not could they but can just how would they do it? And so that's when I went on the search to try to find somebody who'd fit on Broadway. And so how fun to find you. And you'd been in doozies. And you guys had like a kind of a mini reunion of some of the cast members right in to do like a one night performance in New York.
Maddy Trumble 57:12
Yeah, we just did a little like reunion concert with him last year. I think we're gonna think it's gonna be an annual thing. Yeah, some of the original, not just original, any movies? Yeah, we got together and we sing some songs that I sang with. Cara, who I did the show with. And then we did wicked together too. So we sang the song from wicked, which is kind of fun. Because it's so rare that you get to work with someone twice in this business. So yeah, it was super fun and fun to get to see all our friends again and sing songs from the show. Yeah, that's great. And we're gonna do that next year, probably sometime in the summer. So yeah. All right.
Stacey Simms 57:53
Very cool. Well, thank you so much for joining me. It was great to talk with you. Yeah,
Maddy Trumble 57:58
thanks. Thank you so much. Great.
Announcer 58:05
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 58:11
I will link up lots of videos you can see Maddie perform, and that'll be at Diabetes. connections.com. On the episode homepage, I really, really miss shows. I mean, obviously, I'm
Unknown Speaker 58:22
not a performer. I
Stacey Simms 58:23
was a wannabe performer when I was a kid. You know, I wanted to be an actress. That changed once I realized how much talent you did need to. But I love Love, love musicals and shows and I almost this year, I seriously considered starting a second podcast all about Broadway shows. And I may still do that someday. I mean, who knows? Never say never. But we'll see. I just I miss it so much. I can't wait to go back and see people performing. There's nothing like live theater. All right. Thank you, as always to my editor john Buchanan from audio editing solutions. Thank you so much for listening our regular episodes every Tuesday, classic episodes every Thursday. So we'll see you back here in just a couple of days. Until then, be kind to yourself.
Unknown Speaker 59:12
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged.
The very first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. Teplizumab has been show to prevent the onset of type 1 diabetes in people shown to be at high risk of developing it. Stacey talks to Dr. Henry Anhalt of Provention, the company behind the filing. Dr. Anhalt is a pediatric endocrinologist and has a lot to say about what this would mean to his patients.
Listen to our previous episodes on Teplizumab
In Innovations, a round table on insulin pricing with Congresswoman Katie Porter. It didn't have her famous white board, but participants pulled no punches.
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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Episode Transcription:
Stacey Simms 0:00
Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels, increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, the first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. We're going to talk about the clinical stuff. But there's a lot of emotion wrapped up in this development as well.
Dr. Henry Anhalt 0:40
I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,
Stacey Simms 1:05
That's Dr. Henry Anhalt of Provention, the company behind Teplizumab. He's also a pediatric endocrinologist, we'll talk about Teplizumab what is in front of the FDA and why this treatment is so promising.
In innovations. A round table on insulin pricing with Congresswoman Katey Porter didn't have a whiteboard as She's famous for, but pulled no punches. You're gonna want to hear this.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am always so glad to have you here. As you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two, back in 2006. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast.
We are coming up on year six of the show. And I gotta tell you, I don't get I don't get too excited about breakthroughs or treatments anymore, because we've covered a lot of stuff that frankly hasn't panned out the way we had all hoped. But this is a little bit different. Because Teplizumab is a drug that has already been shown to prevent type 1 diabetes for three years. And for some people, they are coming up on four years. What does that mean? How do we know it's preventing it? Why is it so exciting? And you know, could this mean a breakthrough for everyone with type one, there's a lot to unpack here. So we'll get to that in just a little bit. But we've talked about Teplizaumab before with the folks from trial net, I'll link up this previous episodes at Diabetes connections.com. There's always an episode homepage for each and every episode, which more recently will have the transcription. But for every episode has important links and more information for you.
quick heads up. If you are listening as this episode goes live tonight, Tuesday, I will be with a JDRF with a couple of chapters. Or maybe it's just one chapter now things have moved around a lot for JDRF. But I'll be with the Nevada, Arizona and New Mexico chapters tonight, talking about the world's worst diabetes mom, we're going to have a fun discussion about the book. And if you are in one of those chapters, you're going to get the paperback for free. If you're not in one of those chapters come along. Anyway, I've got some audio books to give away. It's always just fun to talk to you. I'll be reading from the book but having a discussion as well type one talk, it's different times because of the different states and because of where I am. So it's 530 in Nevada and Arizona, and 630 in New Mexico, it will be 830 here in Charlotte, North Carolina, I may be in my pajamas, but I hope you can join me for that. And again, I'll put a link and I've got that out on my social. I've been talking about that on social media for a couple of days.
I've mentioned a couple of times this year that we're focusing on technology. And a lot of that is because 2021 is going to see a lot of FDA approvals, things have been backed up because of COVID. Um, so this year, and next year, I think we're going to see many things kind of bunched up. But some of that technology isn't mechanical, right? It's medical or what we would think of more as biological perhaps. And that's what we're talking about today.
But first Diabetes Connections is brought to you by Dario health. And over the years. I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's what I love partnering with people who take the load off on things like ordering supplies, so I can really just focus on Benny, the Dario 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 on how to succeed. Get the diabetes management plan that works with you and for you. Darrius published study Demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections.
My guest this week is the executive director of medical affairs for Provention Bio. He's also a pediatric endocrinologist and Dr. Henry Anhalt is also very involved with Camp Nejeda. He's on the board there. I believe he was the medical director at one point, but we have spoken to Dr. Anhalt before in that capacity. My cousin goes to camp there he did growing up, I will link back on our episode about camp with Dr. Anhalt because it's a really good one. And especially if you're thinking about diabetes camp, if your local campus happening this summer in person, that's a good one to listen to as well. Provention is a biopharmaceutical company dedicated to autoimmune disease. And they are applying for what's called a biologics license application for to please him up for the delay or prevention of type 1 diabetes in at risk individuals that is in front of the FDA right now. There is a gold date here that the FDA has assigned to them of July 2. So we shall see what happens between now and then. But there's an awful lot to talk about unexplained. Here's my discussion with Dr. Henry Anhalt.Thank you so much for joining me and welcome back to Diabetes Connections, it's good to talk to you again.
Dr. Henry Anhalt 6:21
Likewise, Stacey, it's a delight to be back with you again.
Stacey Simms 6:25
Well, I'm so interested in this news, which you know, it's hard to get excited after all this time for me. But this is exciting news. But let's kind of set the stage. If I could talk to me a little bit to just start off here. My listeners are familiar with T one detect the program that JDRF came on the show and talked about in in late December about a new screening initiative and prevention is the company that is I guess, you know, doing the heavy lifting here and doing the work to screen people. Can you talk a little bit about the importance of this project?
Dr. Henry Anhalt 7:00
Well, Stacy, the first thing I wanted to do is to point out that in addition to the T one detect program, we have the type one tested.com website, which will also give people who are going to that website, additional information about screening, it's important that we take a shift in how it is that we look at type 1 diabetes. And as we all know, mostly everyone's experience. And certainly, that's been the case with my patients as a pediatric endocrinologist, they present and they come to attention when they've been having symptoms, when they're not feeling well, when they are noticed to be losing weight. And a parent says, gee, something's wrong, and they go to a doctor and oftentimes are going from one doctor to another until unfortunately, kids and adults are getting sicker and sicker and then ultimately end up in an ICU setting. That's what we used to think about as type 1 diabetes. But we now know that type 1 diabetes is really in three stages, we know it's an autoimmune disease. But the three stages are really important to highlight, because the first stage is when someone has two antibodies that are directed at the pancreas. And those two antibodies are amongst a number of antibodies. But if you have two or more, you have stage one diabetes, even in the absence of having any symptoms or abnormal blood sugars. And we'll come back to that in just a second. Stage Two is when you have those antibodies or more, and you'll have some abnormal blood sugars, but not high enough to either have symptoms, or for anybody to even recognize. And then stage three is, as I mentioned a moment ago, when typically people have symptoms and they end up sick unfortunately, and seeking medical attention. We won't know whether or not someone is in stage one, stage two or stage three, unless they do things like you just suggested and participate in the T one detect program or have their antibodies tested so that they can identify and understand where they are along that continuum. And so we now classify type 1 diabetes as soon as you have two more antibodies, but even in the absence of having abnormal blood sugar, so it's important because as therapies become more and more available, and we know that there are a whole bunch that are now coming along, some of them are pending approval. So for example, Teplizumab which is before the FDA right now. And we hope that the FDA will look at the body of evidence and the safety and the efficacy. And we currently are targeted to have an approval date in the first week of July. But it's also important to realize that there are lots of other medications that are soon to follow, that may also be of use to people who are along this continuum. for us and for the people that we care about. In the type one community, the ability for a drug like Teplizumab provided that the FDA looks at the data and says, yep, we believe it's safe and effective to prevent people from progressing from stage two to stage three. Without that, we won't know who would be a good candidate for that kind of intervention.
Stacey Simms 10:58
I always get a little confused. And I know that for somebody like me, who's a lay person, it seems like we're early on in the research. But the question I always have about the antibodies is I remember years ago with trial net, and they would say things to us like, well, years ago for me when I was learning about trial that they would explain it like, well, kids usually get tested more often than adults, because things can change with children. If somebody has the antibodies, do they always develop the symptoms of type 1 diabetes? Or do we not know that yet,
Dr. Henry Anhalt 11:28
the uptake of testing or the routine screening for people at risk has not been adopted widely. And that's important to highlight. And that's why the JDRF is in the middle of this educational campaign is because the fact is that for all intents and purposes, our colleagues that pediatric endocrinology adult endocrinologist are not thinking about getting antibodies, and certainly in children who you would expect, are at greatest risk. Those who have a first degree relative with type 1 diabetes, a sibling or a parent where we know that their risk of developing type 1 diabetes is 15 fold greater than the general population that it would be more widely adopted. But that's unfortunately not the case. And in adults, are point people don't think so one of the challenges with adults who ultimately develop type 1 diabetes is that the family practice dogs or the endocrinologists who may be are not involved, likely not to be involved, because they are in seeing people who are adults who develop diabetes until their 50s, or maybe their 40s. And they're not thinking about type 1 diabetes, the greater challenge with adults is around the assumption that if you're in your third decade or fourth decade of life, that you do not have type 1 diabetes, but we know that that's not the case, because people into their 50s and 60s are developing type 1 diabetes and are continuing to make insulin but unquestionably have type 1 diabetes.
Stacey Simms 13:21
I'm curious, when T one detect was announced, a lot of people in the diabetes community thought and I agree with them. It was so interesting, it was such a great idea. Like let's get more screening, let's get more screening. But when I talked to JDRF, they said no, we will we want everybody in the diabetes community. But we want people outside the diabetes community to start thinking about this, what can be done to try to push this message into families that you know, don't think that they have to worry about diabetes? How are you all doing that?
Dr. Henry Anhalt 13:49
Yeah, what I really focus on Stacey is the folks who are at risk, okay. And those are the ones with first degree relatives, because we know we have data from global programs where they're doing population screening, they're screening everybody, not only second and third degree relatives of people who have type one, or even first degree relatives, they're screening entire populations. And that's terrific within the context, at least right now, of research programs that are well funded. But we're facing a battle ahead of us as we get people to adopt. And we get the payers and the payer community to recognize the importance, which is part of the educational effort. However, we really need to focus right now for the hearing now, because that's achievable, attainable, and the therapeutic agents that are either before the agency now or that are coming are the ones that are going to be the most likely to benefit. And that's why I think right now at risk is the most important population to look at. Got it.
Stacey Simms 14:57
Let's talk about what's in front of the FDA. I remember A couple of years ago trying to pronounce Teplizumab, and then getting really I know, but getting really excited as it seemed to, and you please fill us in, but it looked like the research was showing this is preventing that movement, as you said, from stage two to stage three, so people have the antibodies that show that they have type 1 diabetes, but it kept them from progressing to showing symptoms for two years. And then it looked like three years recently, am I getting all that right?
Right back to the doctor and hold 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 hypo pain is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly, I'm so glad to have something different, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk.
Now back to Dr. Anhalt. And I just asked him if I was kind of getting your right that Teplizumab had delayed the onset of type one in people for up to three years.
Dr. Henry Anhalt 16:29
You're getting that spot on Stacey. And I think that here, it's important to stress that how do we know that they're actually having this delay? Are there any markers that we can look at. And C peptide is the key, because for the listeners, it's important to highlight that this molecule or this protein c peptide is a measure of how much function your beta cells have, how much of your actual insulin is being produced. And the studies have shown and the authors concluded that in fact, those treated with Teplizumab had stabilization of their c peptide production, and in some cases actually improved c peptide confirming that the beta cell function is being preserved. And suggesting I may add that beta cell function is being restored. So it wasn't only this delay, but it was a delay that was marked by a direct measurable compound or protein that indicates beta cell health and beta cell function.
Stacey Simms 17:40
When we talk about Teplizumab, what is that? It's I assume it's more than, you know, a pill that you would take once and never have to do again. Is it a treatment? What how do you how do people take it?
Dr. Henry Anhalt 17:50
So Teplizumab and I had a really hard time pronouncing that I started working at Provention Bio in December. And I'm finally getting around to it right. And it wasn't only narrow, actually that I heard about Teplizumab when I was working back in 2008, at a hospital in New Jersey, there were these clinical trials ongoing with tech lism ab. And at the time, I became really familiar and saw what the potential that this drug had. But to answer your question directly Teplizumab is administered by IV infusion over a period, at least in the trials over a period of 14 days as one single infusion. So that's the way that the trial that we're talking about the data that we're discussing, that trial had a 14 day single infusion, so IV infusion every day for 14 days straight. That was the data that we talked about was the outcome of that trial. Ultimately, though, the FDA will make the decision of based on the data that exists, how many days of infusion, etc. Got it.
Stacey Simms 19:14
But to be clear, when we're saying it's three years later, those people that they're measuring three years later had, it's still from those first and only two weeks.
Dr. Henry Anhalt 19:23
That is correct. So people had a two week infusion, and this population was followed out. For quite some time, actually, the recruitment took seven years, but this population has continued and when you have this rolling admission into a trial, it becomes a little bit difficult to to characterize, but suffice it to say based on the appropriate data analysis, that's the conclusion that the authors came to and obviously incredibly encouraged by those results. So with the follow up time, We have nearly a year later, it shows now approximately three years,
Stacey Simms 20:05
I may be jumping to conclusions and correct me if I'm wrong. But I'm sitting here thinking, if my son Benny had gotten something like this at 23 months, and we could have delayed the onset of type 1 diabetes, until he almost went to kindergarten like that, to me, I know that there's more implications down the road, but just the idea that he would be able to communicate a little bit better. With me, maybe he could pronounce diabetes, there would be some other things that we could have some really difficult stages that we could have skipped. And I know that you're looking for a lot more than that going forward. But man, that's so remarkable to think about. And I know everybody listening is thinking in their own families, the milestones that can come in three years, it's really interesting stuff.
Dr. Henry Anhalt 20:49
Stacey, I have to pause when I listen to you tell that story. Because for me, I have only a glimpse of the burden that people living with type one, or parents or caregivers experience, I have a glimpse, because I have the privilege of stepping into the sanctity of a family and being open to hearing these things. But to your point, what is that? What does that mean to a child or to a family that you can have a delay of two years or three years? Or even longer than that? What does that mean? So this ability to do that the data indicating that this can do that can do exactly what you're talking about? It can delay to a time where kids can be more able to communicate signs of hypoglycemia, a kid in college, perhaps, delay until after college, and so on and so forth. So how do you put a measure on what that means for a family? You know, what that means? Two years or three years being insulin independent? How can you describe that to someone who doesn't quote unquote, get it? What that means to a family? So I know, just like you would, from personal experience, what I've heard from my patients and their families, how much that could potentially have meant, and how much that can mean to them going forward?
Stacey Simms 22:31
It really is. It's, I was gonna say, it's fun to think about, I'm not sure that's the right way to say it. Because in my mind, it's kind of fun, because I think about how silly my son was at that age, but it is really encouraging to think about, I'm curious, are there any concerns, side effects, anything that people need to be aware of when it comes to the prism app?
Dr. Henry Anhalt 22:54
So you know, I think that every drug has potential risk and benefit. And we have to be fair and recognize that, however, in the data that's been published, from the trial that we've been discussing the tn 10 study, it was shown that the side effects were manageable, that they were easy to address resolved on their own. And that's consistent with all the other studies that have used Teplizumab. So from our perspective, and looking at the data, we feel that it's appropriate to say, yes, there is always a risk, that the side effects that were seen in any of the trials were expected. And were easily manageable
Stacey Simms 23:48
as we wait to see what the FDA will do. Are you still looking for people to be in studies? You know, my audience is always very interested in that. Are there more studies that people can take part in?
Dr. Henry Anhalt 24:05
Yeah, so we currently have a study ongoing, it's a multinational study multi site in the US called protect. And this study, as opposed to the data that we've been talking about that showed you can prevent progression from stage two to stage three. This is a study for people who are newly diagnosed between the ages of eight and 17 within the first six weeks, and I would urge people if they have any questions, or they need any information to reach out and Stacey you and I can talk about what the best way to have that information or those queries directed because when we talk to people about going online and looking at clinical trials.gov it becomes As a very, very difficult website to navigate.
But suffice it to say that this is a trial where kids between the age of eight and 17, newly diagnosed are given an infusion or placebo of Teplizumab. And they are given another dose, about six months or a year later. Again, this is an infusion. However, it's a 12 day infusion, rather than a 14 day infusion. And there are two infusions over the year. And in that study, were measuring c peptide. And as I mentioned earlier in the podcast, c peptide, is a measure of beta cell function. And so the most important measure for us is beyond hemoglobin A1C how are those beta cells working? How is the residual beta cells producing insulin at this point? And how do they produce insulin after the treatment has given as measured by what we call area under the curve of C peptide production? The amount of C peptide over time, responding to drinking a whole lot of sugar, and seeing where it is that the that the C peptide is produced? I think that that's really an important piece.
I also, Stacey, if I may take liberty and talk about Provention Bio for just a moment. Yes, please do. Because it comes back to camp a little bit. And you may wonder, like, what's the connection? When I first started at Provention Bio, we had a town hall. And you know, if 45, 50 people I don't remember. And the CEO, Ashley Palmer was talking about the importance of us understanding the type one community and I was like, okay, you know, that's words, know, sounds good. And I said, Okay, is a company dedicated to type one? Okay, that sounds good. And so I chatted the group, and I said, you know, I'm on the board of Camp Nejeda, most of us live in the tri state area, I'd be more than happy to host you and to have you guys pink benches, and, you know, do all kinds of cleanup the garbage in between sessions. And he said, You know, that's not here. That's part of your job. And I said to myself, I've worked in other companies that have been in the diabetes space, I have never heard a CEO get up and say, this is your job. It was mind blowing. And I knew then, you know, I was in the right place. Right. So with that sort of as a backdrop, we are really committed to type one. The innovation here is, I think, a landmark in the fact that it will be the first disease modifying if we get the approval, which we hope, the first therapeutic intervention in type 1 diabetes, since the development of insulin, and potentially the only one that is going to be disease modifying. But we're not just there.
And as we spoke about, were in front of the FDA now with the hope that we'll get approval for the at risk population. But we're also in clinical trials to see the ones who are newly diagnosed. So if unfortunately, they've gone on to stage three or symptomatic, or we're also working on a vaccine for coxsackie virus. And so coxsackie has been thought of as a precipitating agent or, or an infection that could potentially provoke or create an immune response that ends up being adversely affecting the pancreas. And the crazy thing is that as a pediatrician, first we would see coxsackie virus all the time. But you know, I have the good fortune of working in a company with a lot of really smart immunologists and I joke and I say, you know, if I would have known immunology was so interesting, maybe I would have paid more attention in medical school. But the fact is, here's another way that we're looking at type 1 diabetes, and the commitment there to innovation is truly remarkable. And I would be remiss if I didn't have the opportunity to state that on this podcast, because I think that speaks to the motivation and it speaks to the genuine commitment to people and their caregivers living with type one.
Stacey Simms 29:53
You mentioned camp, and as we've mentioned a couple of times here you are a pediatric endocrinologist. So you Between the two of those things. You've seen a lot of families over the years, you have probably had a lot of nervous moms and quiet dads in your office with little kids too, grumpy teenagers and independent young adults. I'm curious when you talk about something like to please him on. And you mentioned, as you said, this could be the first therapy, disease therapy it for type 1 diabetes. I know you don't have type 1 diabetes, but boy, are you part of all of those families? Can you speak a little bit about what that means to you?
Dr. Henry Anhalt 30:31
Well, I often joke with people that, you know, I would be more than happy to do anything, including working in my parents’ lingerie store, then taking care of people with type 1 diabetes, not because I hate type 1 diabetes, I do. But it's because I see what happened, what families go through. So for me, what it means to me. If again, if we get approval, I'll feel like I've I finally was able to do something, you know, when you get to the point in your career, when you're working with families who have type one diabetes, and you come to the honest realization that you can't fix it, you no surgeon can go in there and cut it out. But you can't fix it. And the burden really sits with the family, the grumpy teenagers who didn't ask for this. So we're dealing with the intimacy issues, college issues, you name it, the high school kids who are trying to deal with their all the complex issues of psychosocial adjustment to high school and body image, etc. It's unbelievable. So for me as a treating physician, anything, anything. And it's not only templates, a map, but anything that could make them living with diabetes just a bit easier to lift, a little bit of the burden would be incredibly meaningful to me. And that's sort of how I got into this, I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help it hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,
Stacey Simms 32:31
Did your parents really own a lingerie store?
Dr. Henry Anhalt 32:33
They did. Olga’s corset and specialty shop two Eastern European immigrants who came here penniless trying to build a life for themselves in the golden land.
Stacey Simms 32:45
Isn't that marvelous?
Dr. Henry Anhalt 32:46
That's wonderful. It sure is. It sure is. Yep. Yep. All they wanted us to see their kids, you know, get an education. And of course, you know, me becoming a doctor. I mean, my dad almost ran up to the podium when I got my diploma. He just couldn't contain himself. So yeah, absolutely.
Stacey Simms 33:05
All right. I think we've got everything and more.
Dr. Henry Anhalt 33:08
Yeah, I mean, I would leave you Stacey with, if nothing else, to really, really get the word out for people to screen for dogs to really hear from their families. You know, why don't you screen, I have another kid that to us. And I think to the whole community, now, there's potentially something that can happen. You mentioned trial net, and trial net has done an amazing job in getting tech lism ab to where it is now. And they've done an amazing job at moving the screening field forward. But it's got to get out of the realm of research alone now because now where they're now where potentially at the threshold of a whole bunch of therapies that we hope will get approved and capitalism AB hopefully, if the FDA is happy with the data, and convinced that the drug is safe and effective, which we have great confidence that they will or others coming right behind. So the screening is so critical, Stacey,
Stacey Simms 34:15
thank you so much for joining me, we will link up all of the information and spread the word as best we can. But thanks for explaining everything and come on back, knock on wood. If everything goes through the FDA, come on back and share what's next.
Dr. Henry Anhalt 34:27
I would be delighted to do that.
Unknown Speaker 34:35
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 34:40
More information on everything we talked about at Diabetes connections.com. You can learn more about teplizumab and provention. It's really fascinating stuff. And you know, it's not as easy as you know, one shot and you're done or one pill a day. I mean, it is as he mentioned, a an in hospital procedure, but imagine two weeks of that And then two, three, maybe four years, maybe more of prevention of type one. I mean, what an incredible beginning. I don't get my hopes up often you know me if you've listened for a very long time I I wouldn't say I'm cynical, but I'm certainly not running after every development. But I feel like we've been watching this one for so long, I'm almost ready to put my rose colored glasses on, we'll see, I'll keep you posted on you know what comes out of this, what the FDA decides, and you know, there's going to be a lot more information down the road.
Up next in innovations. f It is time to get cynical again, I'm going to be talking to you and bring you some audio about a roundtable on insulin pricing. So stay tuned for that. But first Diabetes Connections is brought to you by Dexcom. And you know, when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with, get comfortable with how you want everyone to use the system. And even if you're following your young child, these are great conversations to have at what numbers will you text, how long will you wait to call that sort of thing. That way, the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that is helping Benny with any blood glucose issues using the data from the whole day and night and not just one moment. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
Last week, a new group or at least new to me called investigate insulin now partnered with the American economic liberties project and held a discussion about the impact of insulin pricing. I'm going to read you the description from their website.
“Nearly 7 million Americans suffering from diabetes need insulin to live but a cartel of drug companies who control the production of insulin, Eli Lilly Sanofi and Novo Nordisk have made the lifesaving drug criminally expensive by colluding with each other to hike prices in lockstep over and over and over for years.
On March 18, at 12:30pm, the American economic liberties project and the investigate insulin now campaign hosted a discussion focused on the dangerous impacts of the insulin cartel racial inequalities in insulin access, and what Congress and the new Biden administration must do to hold these corporations accountable and address concentration in this critical industry.”
And that is the quote from the website. I'm going to link this up, you can watch the entire discussion. It is less than an hour, but it features Congresswoman Katie Porter, who you may recognize from her whiteboard. Many people just know her from that. But she's part of the oversight Subcommittee on economic and consumer policy. And then the remarks here are from people with the American economic liberties project to an international insulin advocates, the executive director of Social Security works. So there's a lot of people talking here I want to bring you one short clip. This is about a minute long. And this is Matt Dinger. He is a patient, as you'll hear, he is an advocate, and he is a board member at T one International. He has just said that he doesn't know anyone who uses insulin, who hasn't rationed it at one time or another. And he sets up His comments here by saying that at one point he had no insurance for just one month he was switching jobs, and he knew that he would have no insurance for a month. And that resulted in him rationing insulin ahead of time. So he would have a stockpile, and then also rationing after he got the job and had the insurance because he knew his deductible would mean he would be paying $1,000 a month for insulin for the first few months.
Matt Dinger 38:51
I'm lucky to be in the position that I'm in. And even so I'm a job loss away from financial ruin. Because the concentration of economic power when it comes to the price of insulin lies almost entirely in the hands of three companies. I am completely beholden to them. And I'm terrified by that every single day. Corporate concentration and monopolistic behavior by the big three insulin manufacturers allow them to set prices as high as possible, with no fear of losing market share. This includes things like shadow pricing, which is increasing the prices in tandem with one another instead of competing to set the lowest price, pay for delay agreements, lawsuits, taking biosimilar insulins off the market, patent games to extend their product exclusivities long past when they would normally expire.
As someone who has worked in healthcare for the entirety of my professional life. I understand the price of innovation. And let me tell you leveraging anti-competitive practices in order to give your CEO a pay package of $23.7 million isnt innovative. and businesses that would do that while their consumers are dying aren't companies, they’re cartels,
Stacey Simms 40:01
it's pretty powerful stuff. I'll link it up. If you want to watch it, it is less than an hour. The investigate insulin now campaign is a coalition of a bunch of different organizations. And I think we're going to be hearing a lot more from them, because these are some pretty big names that are backing them. And while there's a lot of hope that the new Biden administration will move on some of these, there really has been no indication from Democrats or Republicans, in my opinion on the federal level that we will see strong action taken. So I'll continue to keep you posted on this one as well. I can't imagine the insulin companies are going to take kindly to being called a cartel. I thought that was some very interesting language.
Alright, before I let you go reminder that I will be speaking live to some JDRF folks out west tonight, that's linked up on social media and in this episode, as well. And if you know, if you're listening a couple of days or weeks after this episode airs, I'd love to come to your chapter virtually, or maybe in person down the road. So please reach out we do have an event tab at Diabetes connections.com. And you can always request me to come speak or just you can ping me anywhere, email me directly. I love talking to groups. It's always so much fun. I always learn something as well.
In our classic episode this week, we're going to be talking to a Broadway performer Maddie Trumbull, and she has played lead roles and Wicked and Newsies. And we'll check in with her and see how she has been doing this interview was five years ago now. And of course, the last year has been you know, we've seen Broadway completely shut down. So I checked in with her and I'll let you know what she is up to in our classic episode airing in just a couple of days.
Thank you, as always to my editor John Bukenas from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.
Benny 41:57
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged