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- [00:00]
A
Hello friends and welcome back to another episode of the Juice Box Podcast. Hey everybody. Today on the podcast I'm speaking with Joanne Milo. She is a 71 year old person with type 1 diabetes who has just launched a fantastic website for people who are older and living with type one. It's called T1D2100.com I want you to check it out right now. Whether you're older or younger, it doesn't matter. This website is about being prepared. T1D2100.com Go check it out. My Grand Rounds series was designed by listeners to tell doctors what they need and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available@juiceboxpodcast.com up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you@juiceboxpodcast.com nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. This episode of the Juice Box Podcast is sponsored by Medtronic diabetes and their MiniMed 780G system designed to help ease the burden of diabetes management. Imagine fewer worries about missed boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today@medtronicdiabetes.com Juicebox Today's episode of the Juice Box Podcast is sponsored by the Contour Next Gen Blood Glucose Meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you@contour next.com Juicebox hi there, I'm Joanne Milo.
- [02:13]
B
I have had a type 1 diabetes for almost 61 years and it's quite long enough and I am currently the founder of T1D to 100 which is a brand new website. It's an informational website to address the issues of T1D and aging. I was diagnosed in 1965. I was told that I wouldn't live past age 40. I am now 71. I seem to be still alive and what has occurred to me is things are different as we age. Different for everyone. Everyone's on a journey, but to do it with type 1 diabetes is quite the challenge. And nobody saw us coming, nobody planned for us. Nobody knows what we need.
- [02:58]
A
Oh, Joanne, you know, I hadn't thought of it that way. So, diagnosed in 65. How old were you at the time?
- [03:03]
B
I was 11 years old.
- [03:04]
A
11 years old. They're giving you the whole you're not going to live that long thing. There was a person on here one time had a couple of stories from older people that some of them really stick to me though. One woman was at college and she was advised to go home, to drop out because she wouldn't need the education and no man was going to want her. They said those words to her. Right. And I've had other people tell similar stories that are shocking. But it wasn't until the way you just said it that I put it together. Maybe we don't have a plan today for people like you because they weren't planning for people like you. They didn't think you were going to live this long.
- [03:42]
B
Absolutely. When I first started looking at it was about 2017 and I talked to Bill Polonski and Paul Madden and I said, I'm concerned. Can we talk about this? And Bill said, what's your problem? You get to live longer. I said, no, no, that's wonderful. We're thrilled. We have the technology, but no one saw us coming and our needs are different. And there are some very scary stories out here about hospital care, about long term care, about aging and the things that happen more commonly in T1D. And there's been very little research. It's just beginning. So I thought we need to know, we just need to know how to do this.
- [04:25]
A
I think maybe just on a human level too, after you've fought for so long to live well, to think that you could get to a moment where metaphysically tripping is your problem. This tiniest little thing shouldn't take you out, especially after fighting for so long to stay alive and to be healthy and everything like that. So when you realized nobody was going to be helping or educating you or even thinking about the problems you might have, where does your brain start that ends with this website?
- [04:52]
B
I gathered a bunch of people in my dining room table and we sat around about 10 of us saying what are we scared of? What? Or concerns that are specific to us. Took copious notes. And we met several times to kind of identify buckets of what the problems were. They're very specific problems and what were the solutions. I really don't like to look at problems and just leave it there. It does me no good. And what can we do? Because obviously, it's up to us, since we're the ones loving it.
- [05:26]
A
You gave me chills when you said that you put people together at a dining room table. Because about two years ago, I started realizing that the people in the Facebook group were so. Like, there were so many of them that eventually start hearing the same things over and again. And where some people get frustrated with that, I said, no, this must be the core problems. Like, right. These are the core problems. So I started recording them, and then once I had a pretty reasonable list, I put the list back out to the people, and I said, just tell me all of your struggles. And I've been doing that for two years, and we finally just kind of collated it together. And now what my idea was is that now that I have a list of their struggles and we have 10 years worth of conversations about diabetes, I already know the answers are in the conversations. Right. So I know what people's problems are going to be before they have them. If we could educate them ahead of time, then when these things pop up, they might not seem like problems. They might. And you're doing the very same thing. And it made me feel good because I think, you know what you're doing. It made me feel like I might have done the right. Honestly, that's how. That's why I got chills. I thought, oh, gosh, maybe I actually did the right thing. What did you learn? What are people's struggles at your age?
- [06:37]
B
Yeah. I'm married to an engineer, and he's taught me technologies and ways of thinking, of problem solving. He's a problem solver. And so I made the list, and then it's a mind map. You put all the little pieces out, and then you start to see what's common to it. And then you put it kind of in a chart, and you start to see, is there a form to this? And are there some major topics? Which is what we've tried to do on the website is, what are the topics? Make them places you can go and get information.
- [07:10]
A
Right.
- [07:11]
B
And they tend to be things like, how do I prepare? How do I be a prepared human being? Because it's what they say in my Pilates class. You do this not because you might fall, but when you fall, it's preparing. Because quite honestly, we're in the fourth quarter. I'm not a sports fan, but I know what the fourth quarter is. And life's journey takes us there. Everybody's there. But if you have type 1 diabetes, it's all it's more complicated and everything that goes wrong is a little more challenging. How do you have a go bag? How do you keep your medical information together? How do you identify your advocates, who's going to be there and your medical team? How do you prepare for surgeries? Because there's a likelihood you'll have surgeries. You fall, break a hip. It's stuff you don't plan on, but you can plan. Yeah. So we have a whole section on preparedness and we have cheat sheets, we have lists and you can print them and customize them and help yourself build. Someone just sent me a message saying, so this weekend I went to Walmart, bought a backpack and I've made my go pack and it just made my heart sing because I thought, she gets it, she understands, she's prepared. I feel better. The other thing is, where are we going to live? Can we stay in our own home? Do we need to be in a retirement community? What are the options? I'm learning that lots of these places charge extra if you have type 1 diabetes, if they take you at all. And then when you get into long term care and nursing homes, it's terribly scary. They have laws and rules and protocols. And what I heard very often is if you have low blood sugar in the middle of the night, they call 91 1. They don't give you juice because the person on the night duty isn't licensed. Just give me some orange juice, give me what I need. And I thought, we need to figure out where these places are. How do we impact their ability to take care of us? What are the laws that we need to do? How do we be prepared if we want to do that? It can happen. Suddenly I was talking to a lady, we just connected through somebody and she was fine and we just wanted to chit chat. And the next day I got a text saying, husband had stroke, can't talk now. I said, okay. And then a couple of days later I reached out and said, how are we doing? And she said, he passed away. And that completely grabbed me. I thought, it can happen just that fast. Your partner, your advocate, your life partner gone. And I watched her. She immediately moved out of her home, moved into a retirement community, had to figure out passwords on the computer because her husband did all the banking. And it was very, very sobering. We did an interview with her and I thought this is what we need to prepare for. We need to understand what could happen. So that it's not that it'll be shocking, but we see a path. Yeah.
- [10:25]
A
Is that the first step, then, is to give them the information and hope that they take the time to absorb it and try to be prepared.
- [10:33]
B
Absolutely. Knowledge is power, and I don't like to get surprised. I kind of want to know what can happen, and I don't want to obsess about it, but I want to kind of have a plan. We all know we're going to decline, and unless it's sudden, it's a process that you'll be very conscious of. So why not at least have knowledge? Your body is going to change as you age. It does for everyone. But if you have type 1 diabetes, your hypoglycemias are different, the way your liver acts is different, your bone density changes, your dexterity, your mobility, your ability to drive, you know, what are you going to do?
- [11:17]
A
Even I hear, like, the simplest things, like eyesight, being able to see your devices, being Dexter artists enough to use them could be an issue. How to put them on. Yeah, I've just. I've heard so many different stories. I did a thing last summer where a hundred listeners came with me, and we went on a cruise together, and I didn't know how it was going to go. Joanne, like, when I first, like, put it out there, I was like, I wonder how this is going to be? And it ended up being, I think, the oldest person there was in their mid-70s, and the youngest person there was like five. And everywhere in between, people had type one. It was really interesting to watch them all just interact with each other. And we did this mental health seminar with Erica Forsyth, who's a therapist who has Type one, who comes to my podcast a lot, and she was there, and everybody just. It was interesting. It was a mixed room. And once it got moving and people started sharing what they were concerned about or had trouble with or anything turned into, like a. It felt like a group therapy session. And then suddenly a woman in her 70s said, puts her hand up, and she's like, I'm all alone. Nobody can follow me. I don't have family that's nearby. And then everyone in the room was like, I'll follow your cgm. And just like that, you could see her. She felt better a little bit. But I realized there's a concern. It's different when you're older. If you're 25 or 35 or 45, and you live by yourself, it's one thing, but there's a tipping point where you almost. You're not sure if you can help yourself. Right. And it gets scarier. I would imagine at the same time. Contournext.com juicebox that's the link you'll use to find out more about the Contour Next Gen blood glucose meter when you get there. There's a little bit at the top you can click right on. Blood glucose monitoring, I'll do it with you. Go to meters, click on any of the meters, I'll click on the Next gen and you're going to get more information. It's easy to use and highly accurate. Smart Light provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the Contour Next Gen also has a compatible app for an easy way to share and see your blood glucose results. Contornext.com juicebox and if you scroll down at that link, you're going to see things like a Buy now button. You could register your meter after you purchase it or what is this? Download a coupon? Oh, receive a free Contour Next Gen blood glucose meter? Do tell. Contournext.com juicebox Head over there. Now get the same accurate and reliable meter that we use Today's episode is sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed 780G system. The MiniMed 780G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings without increasing lows, but of course individual results may vary. The 780G works around the clock so you can focus on what matters. Have you heard about Medtronic's Extended Infusion Set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for and Medtronic has delivered. 97% of people using the 780G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted and they felt less stress with fewer alarms and alerts. You can't beat that. Learn more about how you can spend less time and effort managing your Diabetes by visiting medtronicdiabetes.com juicebox yeah, the technology.
- [15:05]
B
Is amazing and it has given us longer life. But you miss a step or you get distracted by your grandchildren and you get a little rattled and who do you call? I have this expectation that my husband will outlive me and he'll be there for me and I've told him if he dies First I'll dig him up and kill him. He has to be there for me. But, but there's no guarantee. And if that happens, what next? Who. And what's interesting is in my demographic, a lot of women were told not to have children. Pregnancy was very, very difficult without the technology we have today. And one of my friends my age, at her wedding, her mom said to her new husband, if you get her pregnant, so help me God, I'll kill you. And it was that fear of you get pregnant, you will have complications, you will die. So a lot of us don't have kids, which is the assumption is that's who will maybe take care of you. There's no guarantee. It's an interesting demographic. And the question comes to me, people call, what am I going to do? How am I going to get a diabetes? Somebody that can help. And we are in a shortage of endos. We're in a shortage of healthcare providers and educators and they're a little bit slow to pick up on. This is a fast growing demographic where there are more adult T Wendy's than children. And it's a little bit of a fight to get attention because we're not as cute as 10 year olds.
- [16:43]
A
Well, I mean that even aside, like taking your demographic out of the picture, I've been making this thing for over a decade now. I don't see that anybody's quick to move and get something right and get something fixed to begin with. So when you're in your 70s or 80s and this is your problem, you don't have time for the machine to figure it out and, and to put a plan in place and et cetera and so on. Like, so, I mean it's hard enough to figure out Medicare, like I'm supposed to figure the rest of this out as well. And you know, we don't talk about it. Maybe it seems distasteful but like should get older too. I would imagine that thinking your way through complicated things is probably becomes more difficult at some point. You're more challenged to begin with. And then what do you have higher blood sugars? There's a whole generation of people who are probably told better high than low. Right. They might be walking around with a, a measure of brain fog to begin with. I've interviewed older, an older gentleman once who said that even though he got his blood sugars back down in range, eventually the brain fog never went away. He's foggy all the time. The way he describes it, you know.
- [17:46]
B
There'S a significant incidence of mental decline in T1DS. It's significant. There are research papers out and some of it has to do with the inflammatory system. I just attended a workshop in, in Boston and there was some discussion of reducing control, lightening up on control. You don't have to have a tighter time and range because lows are more dangerous. It's hard order to come out of hypoglycemia. Things work differently. And so you don't do that. You don't walk with your bifocals on. You're gonna trip. It's. There are things that if you hear it, then you go, oh, yeah, okay, maybe I can be a little bit safer. When they first said, we're gonna treat a little less stringently, I thought, don't take that away from me. That's what I do. I have tight control and it makes a lot of sense. Hypoglycemias are dangerous for us and fall risk is dangerous. And there's beginning to be research, there's beginning to be funding. And the researchers I met have such a passion to help this community. A lot of it is money based. It's systems that are in place that need to learn to change and that's a slow process and we don't have the time. As you said.
- [19:08]
A
Yeah, you're solving for a different problem. Like when you were 20 and 30 and 40, you're solving for health and longevity. And when you're 75 and 85, you're solving for. I don't want to die today, right. Because I am going to. It's so hard to talk about, but I am going to die sooner than later. Like, what's the average, right. Is it 83 for women? Something like that?
- [19:27]
B
Like something, yeah.
- [19:28]
A
So when you're in the last five years of your life, like, my bigger problem, right, is not falling over today and gone. I'm trying to make it the last five years and a slightly higher blood sugar is probably not going to be the difference between five years and 10 years.
- [19:44]
B
It's a hard thing to give up. We were taught the word control. That was the first word I heard when I was 11. And it's been there. And now that we have the technology, we can get tighter and tighter control. And at one point my endo said, joanne, what's your point? And it's like, well, because I can and I'm supposed to, and I now start to talk to people in our community and there's a gentleman, he's had a stroke. And I said, could you just lighten up a little bit? Just, you don't need an A1C of 5.2. You don't. And he said, yes, I do.
- [20:19]
A
Well, do you think that it's partially a very human thing of being told it's easy to philosophize that other people won't live that long, but it's hard to think that about yourself. I. I would imagine, right.
- [20:29]
B
Very her. Very her.
- [20:30]
A
Yeah. And you're giving away who. Like in this gentleman's example, he's been working very hard his whole life to keep his A1C in the fives. Now suddenly, that's not who I am anymore. People don't shift that easily. Yeah. So you almost become your own worst enemy at some point by trying to do. Trying to do a good job for yourself. Isn't that interesting? Yeah.
- [20:49]
B
Yeah. And then. And the other topic that I'm still trying to get a handle on is coping, resilience. My husband and I liken aging to being in heavy surf with a lot of lumber in it. And you get your footing and you're standing, and then the wave comes, and then there's a piece of lumber that knocks you over and you have to get back up, and you have to get back up mentally and emotionally to feel. I can take it on again. And diabetes is nonstop. It's. It's the definition of 247 that you don't understand unless you live it. It's constant. And as you age, you keep losing. You lose friends, you lose the ability to drive. You lose your vision maybe a little acute, a little less. You don't hear as well. That's a huge issue. And what that means is you don't hear your alarms, you don't hear what's around you. And so it becomes a bit more dangerous, and it doesn't matter. It still keeps going.
- [21:54]
A
Yeah, well, that. I mean, listen, I'm in my mid-50s and.
- [21:58]
B
Oh, you're a youngster.
- [22:00]
A
Contextually, for me, I don't feel so much like that. But what I've noticed mostly about getting older so far is that the. You know, when you're young, like, when you're young, young, you're like, well, I'm gonna try to get some girl to be interested in me. And then once you figure that out, you're like, well, we'll have some kids. I'll keep these kids alive, right? Like, I'll teach them how to play baseball, and I'll keep them warm, and then they go to college. Like, I can get that done. Then they leave, and you're like, what? Is it I'm supposed to be doing exactly what am I getting up every day to accomplish? And as you. It's funny, almost the better positioning you put yourself in in life, the fewer things you have to do as you get older. And then you start thinking, like, what am I doing? I've had it happen to me with the podcast. The podcast is so successful at this point. Like, I could just make it on autopilot if I wanted to, but then it gets boring and wandering for me then. Right. And then I'm like, oh, God, that's what's happening to life, too. Like, I don't have enough to do. And so if you're using your diabetes as your thing to do, and then someone comes along and says to you, ah, let it be six and a half. You'll be all right. I don't know what you're supposed to do there. It's problematic. And who's going to help you? I mean, Joanne, I've interviewed thousands of people who, at every age 10, 5, 15, 30, they're having a hard time finding a doctor or a professional person to help them with things that are far less complicated than this.
- [23:18]
B
Absolutely. And the overwhelmingness continues. It gets a bit much, and yet you can't put it down, because that's been your purpose forever. What we say is stay connected. The big talk this day is about super agers. What is the common thing? Superagers. And it's. They stay connected socially. That is the biggest thing. You keep moving and you connect. And so we have. We have scripts on how to start your own support group, how to moderate a support group, how to keep, you know, keep it going. How do you connect into the community and stay active? It's. It's what gives you a sense of safety and a network.
- [24:04]
A
Yeah, it's awesome. I've almost been embarrassed at this point, but when I started that Facebook group, I just did it because people asked me to do it. I didn't really recognize the. Understood intellectually, the value of community, but until I watched it happen in front of me over and over again, I didn't really, really understand it. And it's just. I think it could possibly be half of all this is just connection and not feeling alone, that sort of feeling. There's someone out there who understands that you could connect with if you needed to. I just watched somebody online have a devastating moment where their friend basically told them, it's enough. I don't want to hear about your diabetes anymore. Right. So now that's a person in their 30s or 40s, who's got a lifelong friend. And they thought, well, here's one place I can go and talk about this. And the friend was like, no mas, it's enough. You know, stop. And then they told this person, our friendship has run its course. She told her. And I was so devastated when I saw that. Like, I just was like, oh, God, I'm so glad this is here, that she came here and shared this here and people jumped right in and had her back right away. Anyway, I've never been prouder to have a community than in moments like that.
- [25:15]
B
You know, I've had that happen. And during COVID I got very active in the open source community. Very, very active. And I saw some friends back away thinking, she's talking about diabetes a lot. I don't want to, I don't need to. And that's fine. I was doing a purpose that I felt was important. And this is another one that's important. Someone brought up early on around the dining room table. When I said, what's your concern? She said, physical geography. I said, I don't know what that means. I really had no sense of it. She said, I've been sticking needles in my body for years and years and years and my skin is getting tired. And I thought, huh, that makes some sense. And the more I studied it, Dr. Earl Hirsch at University of Washington has done a lot of work on skin. And as we get older, our skin gets thinner, our fat layer gets less, and we're still sticking stuff in there. And we need to. That's our portal to our health. It's one of the very few diseases where you have an open access to inside of you with your infusion sets and your needles and the skin takes a beating. And so we've put together a document on what things work to keep your skin a little bit better. And how do you get your devices to hold better? Try this, try that. And it's put together by the community. It's how we figure might help ourselves.
- [26:45]
A
Yeah, it's awesome. I am on your website. I've been since we started. Is it six parts or is that just the initial? Is there more to it than how do you have it broken out? I guess the information, I have it.
- [26:57]
B
Broken out kind of like categories. It's how to be prepared. Where are you going to live, how are you going to cope? What happens to your body? What are the changes that happen and what's the research? Part of my effort is not only get information out, but connect to the research community. Which I've been doing. And they want to talk to us because we're who they're studying and so we can help direct them. And then when they can prove or validate what we're saying, we can help healthcare providers understand us better. They do not have a clue what to do with us. We take a lot of time. We are complicated. We don't always give the right information. It becomes overwhelming. And we're not that great, as we get older to disrepresent ourselves. And the healthcare provider has 15 minutes to help us. So how do we make that easier? How do we help them understand us and not want to back away at the speed of light? Because we need them, but we need the time as well.
- [28:04]
A
Do you think that the information that you've put together would do well to be handed off to doctors, too? Do you think it could act as an educational tool for them?
- [28:14]
B
Absolutely, that's my hope. But they need validation, and that's where the researchers come in. They have to know that it's been studied and that it's important. They don't listen to us say it's important, but the researchers can validate it with statistics and then push it through standards of care, and then they listen. So that's fine to process.
- [28:37]
A
I put a. An entire series together a couple of years ago. I did something where I went to the community and I was like, tell me all the things that at diagnosis you heard that was valuable and tell me all the things that happened to you that was detrimental. And we kind of broke out. Honestly, we got back between like 80 and 90 pages of returns from people, like long stories and everything. We broke it all down and turned it into a series called At Grand Rounds. Right. So we basically turned it into like a how to. It reads both ways when you listen to it. If you're a doctor, it should be a little bit of don't do this, please do that. And if you're a patient, it reads like, this is what you should expect, and if this is happening, maybe you should speak up. Right? Like, that was the. I got endos to come on who had type one after, after we did the. The first initial bit, who supported all the stuff? And I put it out there, and in my heart I was like, doctors are going to listen to this. And I thought then, you know, two years later you realize, like, no, they're not. So it still helps the people listening because they know what to expect. But it is hard to realize that even once you pull together the information and you Validate it through people who have lived experiences. It's not as easy as just sending it off a one sheet to somebody and saying, like, here, look, I'm 75 years old, I have type 1 diabetes. And this is really important. You should make sure you're helping me with this. It's tough to realize that even if the researchers pick up on what you're saying and do the research, that you might be. Joanne, you might be working hard today to help people who are 50 years old right now. Right. Not maybe necessarily yourself or your people in your life.
- [30:14]
B
I have people joining who have little kids, and they say, I want to know what the future is. And a lot of it is just being aware of it. During COVID I asked my local hospital, can I have a paper wristband when any one of us in the hospital, it says type 1 diabetes, like allergic to penicillin or fall risk. And I was told it would take five years to get through compliance paper tag. So I printed them myself. I got 500 for $75. I give them to anybody. And last time I was in the hospital, about four months ago for surgery, I put it in pre op. And they said, you don't need that. And I said, well, yeah, I actually do. It would make me feel better. And then they went through their pre op questions. They said, so you have type 1 diabetes? I said, yes. And they said, so do you need insulin? And I thought they don't get it. No, they don't. And we are constantly educating so that we're safe. And so it's little things and it's, how do we be aware of it and we can help ourselves until the systems maybe catch up? Maybe.
- [31:21]
A
Yeah, somebody recently, when I was interviewing them, they said it more harshly than I've ever thought of it, but they basically said, like, in a world where people are asking me if my kid can eat a cupcake or did I do this to my child? Like, why am I expecting them to understand bigger ideas and be. And to be able to implement them. I just saw a guy online the other day. He got thrown in jail for a couple of weeks. They took him off his insulin, put him on metformin, and he didn't. They didn't give him insulin for a week. He had diabetes. They said, you don't need this. Here's metformin. He had to keep making phone calls and get somebody on the phone to advocate for him. That's even more difficult. But you could say, well, that's jail. I don't think it's any different. Honestly, I can't count the number of nurses and doctors who have come on here who said, like, look, the extent of my education about type 1 diabetes is that it exists. There's type 1, and there's type 2, and that's it.
- [32:10]
B
And they probably don't know the difference. I'll tell you something sobering, which I didn't pay attention to, is. And it's not a happy topic. It's end of life. How do you handle end of life? And there is a thinking that you withhold insulin. That is about the worst death. It puts people into ketoacidosis, and it's a terrible way to go. So we have a document saying, specify that you do not want insulin withheld. Why would you need to do that? Yeah, but you do. And so it's. I don't want that problem. And I didn't realize that. I didn't know it was probably.
- [32:45]
A
Yeah, I didn't realize that. That's horrifying, honestly. So. Because I'm thinking of the end of my mom's life, you're telling me that, like, if she had type 1 diabetes in those last few days, they would have just discontinued her insulin on top of everything else?
- [32:58]
B
Yes. Well, the thinking is it'll accelerate. It doesn't accelerate, and it makes it miserable. Why would you do it? But apparently, that was the thinking.
- [33:10]
A
Yeah. That's how you're thinking about it. Just hold your hand over my mouth, for God's sakes. Like, don't do that. That would be more humane, to be perfectly honest. But to your point, there's another thing you didn't realize you needed to be thinking about.
- [33:22]
B
No idea. None.
- [33:24]
A
How would you. And then by the time you get to that point, you know, I mean, imagine if that happens to you when you're 89. That's not on the top of your list to figure it out. It's just gonna. It's just gonna end up happening to you then.
- [33:34]
B
And you don't have that level of control necessarily. You don't. Things that happen and we don't know. They didn't know what. They didn't think we'd be here.
- [33:42]
A
Yeah. No, it really is. This is like a 504 plan for people in their 70s.
- [33:47]
B
Yeah. I think there's one called a 602 to get into the. To assisted living. And it's a plan you make with your doctor. And we're talking about how do you prepare that so that you get what you need? You get. You're in a facility, you know, she needs something, you get it for her. And how, how is that done?
- [34:05]
A
Are you going to find that people maybe are going to maybe learn what they need and then voice it and then have the institution tell them, well, if this is what you're demanding, we can't do it, like, because there's no, like, legal reason that they'd have to comply with your wishes, is there?
- [34:22]
B
No. And a lot of things are going to have to change in the systems that exist right now. And a lot of it boils down to money and liability and enough care providers in a facility, they have to have some. I think every hospital should have at least access to a T1D specialist. So if you end up in the hospital, they have somebody to talk to to get information. There's such little information. I live in a metropolitan area. It's scary. And they. They should know better. And I think in other areas they don't have that access.
- [34:58]
A
It's a little disturbing to me. Like, you know, you go to all this trouble to put this information together, and now you're going to be met with a group of people who don't understand it. But your idea there about having one person who understands it, maybe that's more reasonable at least. Like, we're never going to train everybody, but could we have one person who understands and then they could go to that person and that person could end up being the thinking part of the machine, and then you could just go do what they tell you to do. That seems reasonable.
- [35:24]
B
Some of the more advanced hospitals have a team. They actually have a team. I took a friend into the hospital, she had sepsis, and all of a sudden these two big people showed up with backpacks and said, who are you? And they said, we're the sepsis team. I went, cool. And they said, we take over. We handle all the specialists. We are in control. And I thought, I want one of those for T1D. I want the team.
- [35:51]
A
Well, thank God something's happening that makes sense. That really does make. Because it's not lost on me when people come on and they complain about any number of things that in a just society would just happen. I think I'm always the one who's always. Listen, I know that sounds right, and it does sound right, but how's that actually going to happen? Like, who's going to pay for that? Who's going to facilitate it? Who even knows enough about it to get it set up? You're expecting a thousand employees to get trained on something. I was like, as soon as they hear about that, there's going to be 5 million other people who want them trained on something else. And they are just people. They're capped on how much they can understand and what they can take in. But yeah, if there's a team that just a response team for that, great idea.
- [36:34]
B
And I don't want to be all negative. We also have things for if you're going to be traveling, how do you pack for traveling? What are some things you need to know about air travel? And people in their 60s and 70s as seniors are retired and they have time to travel. But it's quite a thing to pack. It's quite a thing to have all your devices. It's quite a thing to understand what you need to know as you travel. It's not all negative, it's all useful information.
- [37:04]
A
Can I ask you a question?
- [37:05]
B
Sure.
- [37:06]
A
So, I mean, I don't know what you did for a living. You're retired now, but what did you do when you were working?
- [37:11]
B
I had a lot of careers, but I was in technology for a while. I worked for a company that was early into AI devices machines. I was marketing, marketing support.
- [37:22]
A
So the reason I'm saying it is because you're a thoughtful, I feels well educated person who's thinking about their future. And I'm sitting here wondering about all the people who aren't on your level and are still going to have these problems. How do you find those people and service them well? And do you think your information translates to those people or do you think that this is Sometimes people say about me, mo, your podcast is for white ladies in their 30s and 40s who have time to worry about these things. And it's been said directly to me and I'm like, well, I can only put out the information the way I know how to put it out. But it is always in the back of my head that I'm not reaching everybody that needs it and is there a way that I could reach them or is that on? Is that a problem for someone else who maybe understands their troubles differently? So what do you think? Do you think that your stuff translates or do you think that they need to.
- [38:16]
B
I think it can translate through a lot of ways. One is directly they read it, they think about it and think, oh yes, I need to know this. We have educators who are joining the group so that they can help their patients. That's a wonderful way because they can take it to the level of the patient and educate them. Endos and their entire practice should know this stuff. So they can help their patients, support groups. Someone will know something and share it with others. So it'll infiltrate in a lot of different ways. Some directly, some through people.
- [38:52]
A
Yeah, Tran, where did you get that from? Because that's not a thought process out of your generation. And it's not a thought process from an engineer's wife either. Like, you know what I mean? Like, it feels like you're, like, you're almost going like this. Like, yeah, man. They don't find them. I believe that, by the way. I think that's really the only way to make it work. Like, if you make plans and lists and rules, that generally doesn't reach people. Like, you really do need it to be out in the ether. You need to help somebody so that they feel positively enough about it that they'd share it with someone else. That really is how that stuff blends. But why do you know that what has happened in your life that you're. That you sound like a hippie when you're talking about this. Are you a hippie? Maybe.
- [39:30]
B
I wasn't that age. Absolutely. When I was diagnosed, it was pretty horrifying to me because I was an introvert and my parents talk to everyone. I was die of embarrassment. They would just tell everybody and they were like, how is this topic? And they would just be talking to people. So I watched that. But what I have seen over the years is people comment or they make comments to me and what they're struggling with. And I go, that hurts. I feel the stress that they feel. I'm some sort of empath and I feel it. And I think, well, how can that be better for them? Because it's stressful. I tell everyone this disease, I consider it to be an impossible disease. You can't be perfect. You can't get it right all the time. Even if you get it right, the devices don't get it right. It just isn't doable. So how do you keep coping with it and being okay with that? I feel the pain, I feel the discomfort. I know it, I live it. So it's just. It comes that we need help.
- [40:39]
A
That's a very thoughtful way of thinking about the spread of information. I think it probably sounds like it's blowing in the wind and hopefully it'll work to a lot of people. But I've been at this a long time. That is really the only way it works. Right. It's just you have to put it out there and let people absorb it and pass it around. It really. I mean it. I don't know, it's like a. Scott.
- [40:59]
B
I've been talking about go bags since before COVID and a few people in my community. And how are we getting people to do this, actually do it? It's so important. It's not because you'll end up in the hospital. They can knock on your door at night and say, there's a gas leak in the neighborhood. Get out. And if you don't have a go bag right there at the door, ready to go, you're outside your house for hours and hours without your technology.
- [41:27]
A
Everything you need is outside.
- [41:28]
B
It's not that complicated to understand that, but to do it seems to be a tough step. And, you know, it's repetition. It's like, why is it someone may knock on your door and say, I have tickets to go to Paris. Leave now. Okay, I got.
- [41:46]
A
I can do that.
- [41:47]
B
I can go.
- [41:47]
A
Yeah, just let me take the insulin from the refrigerator and we're on our way.
- [41:51]
B
That's exactly right.
- [41:52]
A
Yeah. We have a small bag. And it's not just for emergencies. It's. You know, sometimes Arden leaves on a Friday, and she's like, I'm going to go to our friends, and we're going to do this and that. And I go, are you going to come home? And she just goes, maybe not. And then she grabs that bag and she leaves. Right. And it sits in her car. And maybe sometimes the bag goes from the kitchen to the car and from the car back to the kitchen, and nobody opens it. They don't know from what's in it or not, but it doesn't matter. But it's there, right? And it's there. And then that alleviates another thing to be concerned about all the time. I do think that preparation can really lighten your load. So I think this is great.
- [42:31]
B
I'm beginning to focus on a mini go bag, a little thing that you take with you as you leave the house to go to a doctor's appointment. Because we all know doctors can be two hours late. And you're sitting there and what if your insulin pump fails and you're sitting there for two hours watching your blood sugar rise? If you had this little, little bag that you just grab with you, and I've heard so many stories. Yeah, we had to go help a friend. We drove two hours, and we realized we didn't have anything and everything failed.
- [43:01]
A
Yes. There's a distance from my house or a time of the thing we're doing, and I say, you have to bring stuff with you there. I don't want the day to be ruined because you have to leave and drive 45 minutes back to do something. It's not going to kill you. But sometimes it happens in the middle of a movie, and you're like, there's still 90 minutes left in this movie. And I don't have insulin happening anymore. And I just had popcorn. And after one time having to stand my whole family up and leave, I thought, we don't go to the movies anymore without insulin and a change of supplies. This very morning, I watched Arden kind of like, I don't know, she does this, like, thing where she marches around before she goes to school and grabs all the stuff she needs. You can see her going through checklists in her head. And I watched her stop and pick some stuff up. And then she kind of held it with one arm and then rubbed her hip. And I was like, what was that? And I was making my breakfast. And then she did it again, and I said, hey, is your hip okay? And. And she goes, yeah, it's fine. But that's all she said to me. But then I watched her kind of pull her tights aside and look, and I was like, she's looking at her cgm. That thing hurts for some reason. And I just walked over to her with a box with a G7. And I was like, just take it with you. Like, don't even take the whole bag with you. Just take this with you just in case. And in the past, like, I love that she's getting older because she just said, okay and took it two years ago, five years ago. I don't need that. This is a thing. Blah, blah, it's going to be fine. Like, she's finally been around it long enough where she knows it's better if I just take the damn box with me in case something happens. But I'm even thinking about people in that world, like you're trying to talk them into putting a bag together or to be prepared for something, and they think, it's not going to happen to me. I've used this example over and over again. My father smoked sometimes three packs of cigarettes a day. I'm healthy. It's no problem. I'm okay. Doctor says I'm good. What kills him? Congestive heart failure. It's not going to happen to me. We all watch the 100-year-old lady on the news and think it's going to be us. And the truth is. And now I've seen some. I've seen some actual studies about it, because this fascinates me so Much. That lady's going to live to 100 no matter what happens to her. She's some sort of a genetic anomaly. Right. But all of us look at her and go, no, I'll probably make it that.
- [45:12]
B
Yeah, yeah, yeah, yeah. And I don't. I don't need to be prepared. I just. I don't want to have bad days. I want to have happy, easy days. I want everyone to have less stress. And what it takes to do that is little. And it's just acceptance of it.
- [45:33]
A
It's so interesting to see a person like yourself trying to help the population that you're talking about right now, basically saying the same thing that I find myself saying to people. Small amounts of effort, save huge amounts of time and huge, huge problems later. Just do this little thing right now and you won't be fighting with a 250 blood sugar for the next four hours. That's it. All the time. I'm like, it takes less effort to do it right than it does to clean up the mess afterwards.
- [46:00]
B
Yep.
- [46:01]
A
So I'm looking at your website here. I'll put it in another place, but t1d2100.com. So it's t the number one d t o100.com.
- [46:13]
B
Yes.
- [46:14]
A
Awesome. Like websites. Very easy to see and navigate. And by the way, I love this. I know I'm old because I saw the toggle to make the font size bigger and I thought, oh, that's brilliant.
- [46:26]
B
I'm working with a young lady on social media and when she makes a post, she has chunky font and it's really stylish. I said, people can't read this. My demographic has trouble with it. She goes, really? It's an awareness.
- [46:42]
A
Yeah. Yeah. Wait till she gets to the point where you're unapologetically. You're telling people you're holding that phone too close to me. I can't see it. Hold it out over here so I can get a better look.
- [46:52]
B
Exactly.
- [46:52]
A
Are you prepared? Where will you live? How will your body change? How are you coping? Be a T1D aging advocate. What's happening? These are six links right out on the front page. There's a newsletter here you can subscribe to, and it looks like you've been doing some seminars and reports.
- [47:08]
B
Yeah. We have a kickoff seminar webinar on Thursday with probably the most significant researcher who's been doing this for 20 years. She's extraordinary. She's at Harvard Joslin, and she's going to talk about the latest research. She is so connected. So Passionate. No connection to T1D, but she's a gerontologist, endocrinologist, researcher, and it should be extraordinary.
- [47:34]
A
Good. I'm glad. Joanna, I don't know. I want to check to make sure that I haven't left anything out or there's nothing that you want to say that we haven't. But before I ask you that question, I just have to tell you, you are awesome. You have an infectious way about you. I've seen you like a bulldog the entire time I've been in this space, like, fighting for people. It makes me proud that, like, I feel like in some little way, like, I think I'm doing the thing you're doing, and I think you're a really great example of it. So I can't thank you enough for continuing to fight people.
- [48:03]
B
Thank you for connecting me on all the issues I've come to you with over the years. Can we talk about this, Scott? And you do. So. Thank you so much.
- [48:12]
A
I mean, I think it's easy to see who's really out there swinging hands and. And trying to do things. I don't see you. I never see you trying to make money off of this. You're not trying to be an influencer. You're not like, you know, you're not running a coaching service. Like, it's funny because you're one of the only people that when you reach out and say, I'd like to post about something or I want to do this, I'm like, yeah, absolutely. Like, I don't question.
- [48:32]
B
Thank you.
- [48:33]
A
I don't even need to know what it is, honestly, if you want to do it, I think it's probably valuable for people with diabetes. So thank you. Bravo. Really lovely the way you go. Is there anything that we did miss or anything that we should have said that we didn't?
- [48:45]
B
No, you've got it. But if anyone has questions, reach out. I'm here and I'm developing a team that can respond and create more content and stories and information we need. We actually need.
- [48:59]
A
Yeah. This has its own Facebook group.
- [49:02]
B
Has a Facebook and Instagram, and we're on LinkedIn.
- [49:06]
A
Okay.
- [49:07]
B
Yeah, we're out there slowly growing, and actually not slowly, faster than I thought. And I put out a post over yesterday asking people one word. I just want one word of your fears or concerns. Just one word. Because a researcher has come to me and said, we're going to talk about this. And I am now one of the top posters in one group because there are so many responses, and they're Giving me one word and. Or one phrase. And there are people that say, I have no worries, I have no fears. That's great, too. Yeah, yeah. Just be prepared.
- [49:44]
A
I just had a lady post yesterday and she said, can we talk about people who don't ever feel burned out? She's like, I never feel that overwhelmed by all this. And when I saw the post, the cynical part of my brain was like, this is going to start a fight. And then I thought, you know what? It's not like. I think I have built a community where this conversation is going to happen and it's going to be accepted the way it was intended. And it actually was. And I was just so thrilled because I know that sounds crazy, but she needs support, too. She sees everybody else struggling and she's wondering, why am I not struggling? Is there something wrong? Maybe I'm not doing something or don't know about something. And everybody gets to say how they feel and have a conversation about it. It's really, really very valuable. Yeah. Your Facebook group is right. Linked at the top. When you said you're putting together a group to respond, how do you mean that?
- [50:31]
B
It occurred to me the day I launched the website that I need a team around me because there's so much to do and there's outreach to and there's so much that I want to do. So I've got people. Nothing goes on the website unless it's been checked by two other people for the validity, the accuracy of what we're putting out there. It takes a team. I did that with Loop and Learn, and it's a team.
- [50:53]
A
Yeah. You have volunteers, People are helping.
- [50:56]
B
I have volunteers. I have no funding on this at all.
- [50:58]
A
I was going to say, this is not making you any money. Right. Like, yeah, you're costing me money. I was going to say, no one stepped up and said, hey, Joanne, take a bunch of money here. Well, you know what, too? It's. None of the devices are really designed for older people either.
- [51:12]
B
So, yeah, if you're over 60, you may have trouble opening. I won't say the names, but there are two of them out there. CGM containers. I have trouble, and people call me and I say, do you have a rubber band? Because sometimes it takes rubber band to get the grippy on opening the sensor case.
- [51:31]
A
Yeah, makes sense.
- [51:33]
B
People have got trouble.
- [51:34]
A
So, yeah, I started thinking like, well, maybe one of these companies would throw you a little money to put this together. And I thought, I don't think they want anybody looking at how unfriendly their stuff might be to older people too. So. And I don't even know that, like, you know, it's funny if you put me in the position to like say you put me in that company and said, hey, our stuff is not that friendly for people, I don't even know how I would go about that. Like, and I'm sure you're a reasonable person. I'm sure you might have a similar feeling, right? Like, yes, it needs to be done, but is it a thing that they could put that kind of money into or that kind of time or staff? Like, it's not as easy as just it should be like this. So make it this way.
- [52:10]
B
I think if they thought a little better, I was, I did a focus group brought a bunch of people in for a company that now is owned by a bigger company and it's for a long term sensor life or Cannula Life. And they had us opening the container and the women did it differently than the men. And they said, why are you doing that way? And they said, well, we have nails. They said, oh, we never tested it on women. It's. This is basic.
- [52:38]
A
Yeah, I take your point. The amount of websites that I've gone on in my life and thought, did they not try this thing after they designed it? Did no one use it first? Yeah, you do need a small group of people to focus your stuff on and to focus test your stuff on. So anyway, you're lovely. Thank you so much for doing this. I can't thank you enough.
- [52:56]
B
Thank you so much.
- [52:57]
A
No, it's a pleasure. It really is. Hold on one second. I'd like to thank the blood glucose meter that my daughter carries, the Contour Next Gen blood glucose meter. Learn more and get started today@contour next.com juicebox. And don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the Contour Next gen in cash. There are links in the show, notes of the audio app you're listening in right now and links@juiceboxpodcast.com to contour and all of the sponsors. Thanks for tuning in today and thanks to Medtronic Diabetes for sponsoring this episode. We've been Talking about Medtronic's MiniMed 780G system today, an automated insulin delivery system that helps make diabetes manage management easier day and night. Whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link medtronicdiabetes.com juicebox hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast. If you're looking for community around type 1 diabetes, check out the Juice Box Podcast Private Facebook Group juice box podcast type 1 diabetes but everybody is welcome. Type 1 type 2 gestational loved ones it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juice Box podcast type 1 diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording wrongwayrecording.com.