#1683 T1D to 100
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61-year type 1 veteran Joanne Milo about aging with T1D, staying prepared, navigating independence, and building a safer, smarter future for older adults with diabetes.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox podcast.
Hey everybody. Today on the podcast, I'm speaking with Joanne Milo. She is a 71 year old person with type one diabetes who has just launched a fantastic website for people who are older and living with type one it's called T, 1d to one hundred.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. T, 1d to one hundred.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 at Juicebox podcast.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 at Juicebox podcast.com, nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. This episode of The Juicebox podcast is sponsored by Medtronic diabetes and their mini med 780 G 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 at Medtronic diabetes.com/juicebox today's episode of The Juicebox 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 at contour next.com/juicebox
Joanne Milo 2:10
Hi there. I'm Joanne Milo. I have had type one diabetes for almost 61 years, and it's quite long enough. And I am currently the founder of T 1d to 100 which is a brand new website. It's an informational website to address the issues of T 1d 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 it 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 one diabetes is quite the challenge. And nobody saw us coming, nobody planned for us. Nobody knows what we need.
Scott Benner 2:58
Oh, joy. You know, I hadn't thought of it that way. So diagnosed at 65 How old were you at the time? I was 11 years old. 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. I've 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?
Joanne Milo 3:41
Absolutely, when I first started looking at it, was about 2017 and I talked to Bill Polonsky 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 in. Our needs are different, and there's some very scary stories out here about hospital care, about long term care, about aging, and the things that happen more commonly in T Wendy. And there's been very little research. It's just beginning. Yeah. So I thought we need to know, we just need to know how to do this.
Scott Benner 4:25
I think maybe just on a human level too, like after you've fought for so long to live well, like to think that you could get to a moment where, metaphysically, like tripping is your problem, like 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.
Joanne Milo 4:51
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 are our concerns that are specific to us? Took copious notes, and we met several times to kind of identify buckets of what the problems were. There 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 living it,
Scott Benner 5:25
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, or 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 struggles at your age?
Joanne Milo 6:36
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 I 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 right? And they 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 one diabetes, it's 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 is prepared. I feel better. The other thing is, where we 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 X for if you have type one 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 911, they don't give you juice because the person on the night duty is 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, yeah, 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 could happen just that fast, your partner, your advocate, your life partner gone, yeah, and I watched her, she, I mean. 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 sober, and 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,
Scott Benner 10:25
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
Joanne Milo 10:32
Absolutely it's it's knowledge is power. And I don't like to get surprised. I just, 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. Yeah, so why not at least have a knowledge your body is going to change as you age. It does for everyone. But if you have type one 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?
Scott Benner 11:16
Even I hear like the simplest things like eyesight, being able to see your your devices being dexterous enough to use them can 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 100 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 she was there, and everybody just it got it was interesting. It was a mixed room. And once it got moving, and people started sharing what they were, like, 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, you know, 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, you know, like, and just like that, you could see her like, you know, she felt better a little bit, but I realized, like, there's a concern. It's different when you're older, right? Like, if you're 25 or 35 or 45 and you live by yourself, it's one thing, right? 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, contour next.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. Contour next.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 contour next.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 mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to an 80% time and range with recommended settings without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic 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 780 G 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 Medtronic, diabetes.com/juicebox,
Joanne Milo 15:03
yeah, the technology 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 it's no guarantee. And if that happens, what next? Who right? 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 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 who will maybe take care of you? 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 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 and children, and it's a little bit of a fight to get attention, because we're not as cute as 10 year olds.
Scott Benner 16:43
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 to put a plan in place and etc, 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. 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 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 and in range, eventually, the brain fog never went away. He's foggy all the time, the way he describes it. You
Joanne Milo 17:45
know, there's a significant incidence of mental decline in t1 DS. It's significant. Their research papers out, and some of it has to do the inflammatory system. I just attended a workshop in in Boston, and there's 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 harder to come out of hypoglycemia. Things work differently, and so you don't do that. 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, 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 so and there's beginning to be research, there's beginning to be funding and and the 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, Yeah, you're
Scott Benner 19:08
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 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? Like, something, yeah, so when you're in the last five years of your life, like, my bigger problem right is not falling over today and going, 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 and 10 years. So it's
Joanne Milo 19:44
a hard thing to give up. We were taught the Word control. That was the first word I heard when I was 11. Yeah, and it's been there, and now that we have the technology, we can get tighter and tighter control. At one point, my endo said, Joanne, what's your point? I was like, 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 A 1c of 5.2 you don't. And he said, Yes, I do. Well,
Scott Benner 20:19
do you think that it's partially a very human thing of like being told, like it's easy to philosophize that other people won't live that long, but it's hard to think that about yourself, I would imagine, right? Very her, yeah. And you're given away. Who, like this gentleman's example, he's been working very hard his whole life to keep his ANC 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, try to do a good job for yourself. Not interesting?
Joanne Milo 20:48
Yeah, yeah. And then 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 up, back up, mentally and emotionally to feel I can take it on again. And diabetes is non stop. It's, it's the definition of 24/7, that you don't understand unless you live it. It's, it's constant. And as you age, you keep losing you lose friends, you lose the ability to drive. You lose your vision may be a little acuity is 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, right? And it doesn't matter, it still
Scott Benner 21:53
keeps going. Yeah, well, that, I mean, I'm listen, I'm in my mid 50s, and, oh, you're a youngster. 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 there's 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, join. I've interviewed 1000s of people who at every age, 10, 515, 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
Joanne Milo 23:17
this. Absolutely and the overwhelmingness continues. It gets a bit much, and yet you can't put it down, because that's 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 super agers? 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
Scott Benner 24:03
network. 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 I understood, like, 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 like that, that sort of thing, feeling like 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. Diabetes anymore, right? Like, 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 said, they told this person, our friendship has run its course. She. Older, and I was so devastated when I saw that, like, I just 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. You know, I've
Joanne Milo 25:15
had that happen, and during covid, I got very active in the open source community. They were 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 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 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 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 a put together by the community. It's how we figure might help
Scott Benner 26:44
ourselves. 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 it like, how do you have it broken out? I guess the information
Joanne Milo 26:55
I have it broken out, kind of like categories. It's you know 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 just represent 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 and but we need the time as well.
Scott Benner 28:03
Do you think that the the information that you've put together would do well to be handed off the doctors too? Do you think it could, it could act as a an educational tool for them?
Joanne Milo 28:13
Absolutely, that's my hope. But they need validation, and that's where the researchers come in. They have to know that it's it's been studied and 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 the process.
Scott Benner 28:37
I put a an entire series together a couple of years ago, did something where I went. 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 it Grand Rounds, right? Like 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 gonna 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 like, sending it off a one sheet to somebody and saying, like, here, look, I'm 75 years old. I have type one diabetes, and this is really important. You should make sure you're you're helping me with this. It's tough to realize that even if the researcher. Pick up on what you're saying and do the research that you might be showing you might be working hard today to help people who are 50 years old right now, right not maybe necessarily yourself or your people
Joanne Milo 30:14
joining who have little kids, 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 I'm anyone's any one of us in the hospital? It says type one diabetes, like allergic to penicillin or fall risk, and I was told it would take five years to get through compliance a paper tag. So I printed them myself. I got 500 for $75 I give them to anybody. And I 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, 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 one diabetes? I said, Yes. They said, so do you need insulin? And I thought, they don't get it. No, they don't. And we have constantly educating so that we're safe, and so it's, 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,
Scott Benner 31:20
yeah. I somebody recently, when I was interviewing them, said 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, 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, but the extent of my education about type one diabetes is that it exists. There's type one and there's type two, and that's it. And they
Joanne Milo 32:10
probably don't know the difference. Yeah, I'll tell you something sober in 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 keto acidosis. 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, yeah, I didn't
Scott Benner 32:44
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 one diabetes in those last few days, they would have just discontinued her insulin on top of everything else.
Joanne Milo 32:58
Yes, well, the thinking is, it'll accelerate. It doesn't accelerate, and it makes it miserable. Why would? Why would you do it? But apparently, there that was the thinking.
Scott Benner 33:09
Yeah, 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. So oh and that. But to your point, there's another thing you didn't realize you needed to be thinking about, no idea. Yeah, none. 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.
Joanne Milo 33:33
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
Scott Benner 33:41
here? Yeah, no, really, this is like a 504 plan for people in their 70s,
Joanne Milo 33:48
602 to get into the to assisted living. And it's a plan you make with your doctor, and we're talking about it. 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 is that done? Are you
Scott Benner 34:05
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
Joanne Milo 34:21
no and then in a lot of things, you're 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 T 1d 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 should know better. And I think in other areas, they don't have that access. It's a
Scott Benner 34:57
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.
Joanne Milo 35:23
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. Cool. And they said, we take over. We handle all the the specialists. We are in control. I want one of those team Well, thank God.
Scott Benner 35:49
Something's happening that makes sense. That really does make because, you know, it's not lost to me when people come on and they complain about, you know, any number of things that in a, in a, in a just society, would just happen. I think I'm always the one who's like, you know, 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 1000 employees to get trained on something. I was like, you know, as soon as they hear about that. There's going to be 5 million other people who want to be 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 got just a response team for that great
Joanne Milo 36:33
idea, yeah, 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? You know? 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. Can
Scott Benner 37:04
I ask you a question? Sure. So, I mean, I don't know what you did for Olivia. You're retired now, but what did you do when you were working?
Joanne Milo 37:10
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. So the
Scott Benner 37:22
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 you know, white ladies in their 30s and 40s who have time to worry about these things, and I it's been said directly to me, and I'm like, Well, I can only, 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 yes, is there a way that I could reach them? Or is that on is that? Is that a problem for someone else who maybe understands their their troubles differently? So what do you think? Do you think that your stuff translates, or do you think that they need to
Joanne Milo 38:16
translate through a lot of ways? One, one is directly. They read it, they think of 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 in 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 it'll infiltrate in a lot of different ways, some directly, some true people.
Scott Benner 38:51
Yeah. 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 gonna 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?
Joanne Milo 39:28
Maybe I was of that age, absolutely, when I was diagnosed. It's pretty horrifying to me, because I was, I was an introvert, and my parents talk to everyone I was I would 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, 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 you can't get it right all the time, even if you get it right, devices don't get it right, it just isn't doable. So how do you keep coping with it and being okay with that? It's I feel the pain, I feel the discomfort. I know it, I live it. So it's just it comes it. We need
Scott Benner 40:38
help. That's a very thoughtful way of thinking about the spread of information, what 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's like a unit.
Joanne Milo 40:59
Scott, 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, 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. It's not that complicated to understand that, but to do it seems to be a tough step. Yeah, and you know, it's repetition. It's like, why is it someone may donk on your door and say, I have tickets to go to Paris. Leave now. Okay, I guess I can do that. I can go,
Scott Benner 41:47
yeah, just let me take the insulin from the refrigerator, and we're on our way. That's exactly right. 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 gonna go to a friend's and we're gonna 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, you know, I think this is great.
Joanne Milo 42:30
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? Yep, and you're sitting there for two hours watching your blood sugar rise. If you had this little, little bag, did 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.
Scott Benner 43:01
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. Like, I don't want the day to be ruined because you have to leave and drive 45 minutes back to do something. Like, it's not going to kill you, right? But sometimes it happens in the middle of a movie, right? And you're like, still 90 minutes left in this movie, and I don't have insulin. Happen anymore, and I just had popcorn and and do and, you know, 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 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 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 I don't need that. This is a thing. Blah, it's going to be fine, like she's finally been around it long enough, or she knows, like 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 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 is 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, I'll probably make it that.
Joanne Milo 45:14
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
Scott Benner 45:32
of it. 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, like, small amounts of effort save huge amounts of times and huge huge problems later. Like, just do this little thing right now, and you won't be fighting with a 250 budget or 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. Yep. So I'm looking at your website here. I'll put it in another place, but t1, d2, one hundred.com. So it's t, the number 1d, T, o1, zero, zero.com. Yes, 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.
Joanne Milo 46:26
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,
Scott Benner 46:41
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 say it. Hold it out over here so I can get a better look exactly. Are you prepared? Where will you live? How will your body change? How are you coping? Be a T, 1d aging advocate. What's happening? These are six links right down on the front page. There's a newsletter here you can subscribe to and it looks like you've been doing some seminars and and
Joanne Milo 47:07
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 T 1d but she's a gerontologist, endocrinologist, researcher, and it should be
Scott Benner 47:33
extraordinary good. I'm glad 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. 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 thank
Speaker 1 48:02
you for connecting me on all the issues I've come to you with over the years. Please. Can we talk about this? Scott and you do so thank you so much.
Scott Benner 48:11
I mean, I think it's easy to see who's really out there swinging hands 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. Thank you. 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
Joanne Milo 48:44
know 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
Scott Benner 48:58
actually need? Yeah, yeah. This has its own Facebook group,
Joanne Milo 49:02
has a Facebook and Instagram, and we're on LinkedIn, okay, 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, yeah, 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.
Scott Benner 49:44
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, like, because I know that sounds crazy, but she needs support too. Like, she sees everybody else struggling, and she's wondering, like, why am I not struggling? Like, is there something wrong? Like, 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'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?
Joanne Milo 50:31
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 do, 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
Scott Benner 50:52
team. Yeah, you have volunteers. People are helping. I
Joanne Milo 50:55
have volunteers. I have no funding on this at all. This is not
Scott Benner 50:58
making you any money, right? Like, yeah, no one stepped up and said, Hey, Joe and take a bunch of money here. Well, you know what to it's none of the devices are really designed for older people, either. So
Joanne Milo 51:13
yeah, if you're over 60, you may have trouble opening, I won't say the names, but there are two of them have their CGM containers. I have trouble. And people call me. I say, Do you have a rubber band? Because sometimes it takes rubber band to get the grippy on opening the sensor case. Yeah, it makes sense to me. People have trouble. So yeah. I
Scott Benner 51:34
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.
Joanne Milo 52:09
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. And they said, Oh, we never tested it on women. It's this is basic.
Scott Benner 52:38
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 it and focus test your stuff on so anyway, you're lovely. Thank you so much for doing this. I can't thank you enough. Thank you so much. No, it's a pleasure. It really is. Hold on one second. You 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 at contour, next.com/juicebox and don't forget, you may be paying more through your insurance right now, for the meter you have, then 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 at Juicebox podcast.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 medtronics, mini med 780 G system today, an automated insulin delivery system that helps make diabetes 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, Medtronic diabetes.com/juicebox,
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