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.

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!

Join the Diabetes Connections Facebook Group!

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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

Lija Greenseid, her husband Andrew and their son & daughter are recently back to their Minnesota home after almost a year of whirlwind travel. The Greenseids always enjoyed travel and they wanted to show their children, Arija & Adam, more of the world. They picked up and spent 9 months traveling internationally. Since Arija has type 1 diabetes, this took a lot of planning, extra supplies and learning as they went. Lija shares their story.

Also this week, as we follow Bike Beyond all summer long, Stacey talks to Sid Sharma. Sid was diagnosed with type 1 two years ago, at age 27. He's already biked from London to Paris and is excited to travel through America with the team.

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As always, thanks for listening!!

This week, he’s traveled the world, despite type 1, and now Jeremy Larsen is back in the US, traveling to the US Parks and Monuments. Saying "You always find a way," he wants to inspire us to get out and have fun without fear as we travel with diabetes. Jeremy shares why he's back home in the US to travel the parks, after living and traveling abroad for many years. He also explains why he's made his trip a fund raiser for JDRF.

Robyn Adams has a son, a husband, and a father-in-law with type 1 diabetes. She's also a Disney Planner and has advice on how to navigate a trip to Disney World (or anywhere) with diabetes. You'll also hear from Rob Myers, organizer of "Running for Ruth." His mother died last year from complications of type 2 diabetes and now he's honoring her memory by raising money to send kids with all types to diabetes camp. Stacey also talks about Diabetes Podcast Week, a project she's organizing for the week of February 1, 2016.

American Jeremy Larsen has traveled the world and currently lives in Japan. He started the 70-130 project (the "perfect" blood sugar range) to show that type 1 diabetes shouldn't hold anyone back from travel. Our Community Connection features a family that loves to visit exotic locations and their advice for taking diabetes on the road.