“Nobody’s Talking About It” – The unique issue of getting older with T1D

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Diagnosed almost 60 years ago, Joanne Milo loves technology and helped start the popular Loop and Learn group. She’s also passionate about diabetes and aging.

It’s hard to believe now, but many people diagnosed in the 1960s and 70s were told they wouldn’t live to age 40. Thankfully, that wasn’t true. But the medical world wasn’t prepared for them to actually live long and healthy lives. There is very little research or support for people with type 1 over the age of 50. Imagine when you get to 80 or beyond!

Joanne Milo is also the author of the book and blog “The Savvy Diabetic” and she has a lot to say about how we can all prepare better for emergencies or hospital stays.

Joanne’s website – The Savvy Diabetic

More about Loop and Learn

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

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Episode Transcription Below (or coming soon!)

Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921 Where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, diagnosed almost 60 years ago, Joann Milo loves technology and helped start the popular loop and learn group. She’s also passionate about diabetes and aging. She shares an eye-opening conversation with a friend who said, Well, what’s the problem? You’re living longer?

Joanne Milo 0:37
No, no, we’re grateful. Honestly, we’re very grateful. But it’s not without its issues. And he sat back and said, it’s kind of like people with HIV. They weren’t supposed to live this long, but they are now and the medications have caused complications. The disease itself causes complications, but they’re living with it now. And they’re also aging.

Stacey Simms 0:59
Joanne talks about her book, being prepared for emergencies, and so much more.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another reef of the show. I’m always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. And oh my gosh, last week with that Dexcom episode, we got so many new people. So welcome. Glad to have you here. More listeners, more people in the Facebook group. We were all very excited apparently about the g7. And about new technology. I don’t mind sharing that that episode saw the largest one-day download or listening to the podcast in its history. And I’ve been doing this podcast since June of 2015. So it was a big deal. And I’m really glad you’re here.
We do focus on technology quite a bit on the podcast, your listeners have told me that is your number one concern. That’s what you are most interested in. And I am happy to oblige. But not every week is going to be about a deep dive into a device. We do have that coming up. So I want to let you know right off the bat next week, I’m talking to Tandem, we’re going to go through their five year plan they released in December with new devices, new software updates, everything from control IQ updates to Mobi their tiny little pump and other things that they talked about in that R&D presentation. So excited to bring you that will be next week. And I just did an interview with the folks making a brand new pump. It’s called Sigi. It is just starting to be in testing and trials. Now they’re hoping to bring it to the United States in a couple of years. But Sigi is interesting because it’s a patch pump, but it’s not disposable. If you’re in the Facebook group, you know why I shared information about both of those interviews already and took your questions. The best way to get questions to me for these newsmakers and device companies is to join the Facebook group. It’s Diabetes Connections the group, and I’ll link it up in the show notes. But you can always email me as well, Stacy at diabetes connections.com. And let me know what you want to hear.
So if technology is the number one issue for you, as you listen, close behind it is aging and diabetes. And I know you know, we have a lot of parents who listen with little kids. But we also have a lot of adults with type one and a lot of adults over the age of 50. And you I’m not telling you anything new. Many of these folks who were diagnosed in the 50s and 60s and even 70s were told that they were not going to live very long, which is terrible to think about. But as people are living longer with type one diabetes, there are not a lot of resources. There’s not a lot of research, there’s not a lot of information on getting older with diabetes. So this is something I’m going to be focusing on this year as well. And this week, my guest really contradicts the stereotype that you have to be under 40 to adopt any new technology. We hear that a lot. But Joanne Milo was so taken with Nightscout and looping and everything pretty close to the beginning of the DIY movement that she helped found what’s now called the loop and learn group out in California. And then you know, it’s on everywhere of course on Facebook and YouTube. They do some great interviews and some talks. And I’ll link that up as well. Joanne is also the author of the blog and book, the Savvy Diabetic, a survival guide, and she shares more about that in our interview. Joanne was diagnosed with type 1 diabetes in 1965 57 years ago this month. She has a lot of useful information and a terrific story. I hope you enjoy this interview.

Joanne, thank you so much for being here. I’m really excited to talk to you. I’m so glad you had some time for me. Thanks.

Joanne Milo 4:30
I’m really excited to be here with you as well go for it. I’m ready to talk.

Stacey Simms 4:35
We’ve got a lot to talk about. So if I am not mistaken, I’m trying to do the math here. It seems to me that you are coming up on 57 years since you were diagnosed.

Joanne Milo 4:44
I am. I remember the day, the day of the week, the time of the day what the weather was like I remember everything about that moment. Tell us about that is it was 1965 it was January 25 which was a month And then it was 5:30pm. I had been home sick from school and hadn’t been feeling well, month before we had been on vacation. And I was swilling Diet Coke. And so thirsty, but I was losing weight. And then we got back from vacation, I was in valet, and I’d come home and drink a gallon of orange juice. And no one’s sitting there while I was exercising, I was drinking. And then one day, I just didn’t feel well, I had a headache just didn’t feel well my mom took me to my pediatrician who I think we didn’t have finger sticks them. So I’m sure he did a test tape urine test tape. I remember him sitting in a room. It was a it was in his office, and it was very sober and only one little office light. And he sat down. And he explained that I had diabetes. And I did not comprehend what that meant. It sounded to me like dots, diabetes thoughts. I don’t know, I thought I was gonna start having spots everywhere. So I didn’t know. But he did not hospitalized me because I was frightened of hospitals. And had an experience as a three year old where I jumped on the bed and swallowed with Lollipop. And the nurse slapped me to stop me from crying. So she gave me a shot. I really didn’t want to go to the hospital. And so he stepped MY MOM THROUGH shots through the night and test tape. And we did okay, I think my mom suffered more than I did. Because every shot she agonized over, it was always difficult for her. And I just remember we did a lot of learning.
And I lived in the suburbs of New York City. And so we ended up going to a world renowned specialist in New York City who scared the bejesus out of me. Because the 65, and offices were darker. They, it just seemed like catacombs in the guy kind of scared me. So then we went to another endo in New York, who was over the top, people who grew up in New York knew this guy, he wrote one of the major books as Henry dolger. And he did not believe in tight control because he thought low blood sugar was dangerous. And he he really promoted that. And it turns out, he was disastrous for a lot of kids, because I had friends who just didn’t make it through because they ran so high, all the time that we’ve learned and all through high school at Christmas times, my mom decided I should go to JOSM clinic in a time it was a clinic where you stayed for a week, you got up at 530. In the morning, you collected your urine in these pictures made out of aluminum, and then you shuffled down the hall with your little picture, and everyone would be going down the hall to have your urine tested. And if it tested high, you would set back to drink some water and pee again and a half an hour, this is all 530 I remember that. And then all day you went to classes. It was an interesting time. But I was such an emotional kid that my blood sugars are all over the place. And it took me two weeks every Christmas, because they couldn’t quite get me under control. So from there, I developed a dislike of the city of Boston. I’ve been vaccines and the lobsters good and it’s okay. But in retrospect, when I was 35, I think my parents for the education, it was valuable. It just was a little overwhelming. And growing up in a in a dysfunctional family. A lot of emotional reactions to my poor child has to not eat this. So let’s have some ice cream wasn’t the best environment. But it wasn’t deliberate. It was just a tough time growing up. And then I went away to college. And it was it was it was all just very interesting.

Stacey Simms 8:48
Can I stop you before you go to the college years? I’m curious to the doctor that you said didn’t want to keep kids lower. I’m thinking about the little that I know about that time period. And the insulin was not as precise. The you know, the blood sugar monitoring barely existed, right? You’re talking about urine tests, which showed where your blood glucose was hours prior? Do you think he had a good reason for doing that? I’d love to learn more about what he meant.

Joanne Milo 9:09
Yeah, he he actually wrote a book, I have the book. And I’ve read it and tried to understand he was very large personality. And so you go in there, and he introduced you to a kid who just got back from Europe, see, you can travel the world you can find anything you want. But he was very frightened of low blood sugars, because that’s when you could have seizures, right? I think it wasn’t as known of the dangers of highs at that time. I don’t know why he didn’t. But after about two or three years, my parents said this doesn’t make any sense. It just it’s not logical. When I wrote my book, and we could talk about that. One of my reviewers cuz I commented on that and she said, You have to understand the thinking at the time. There wasn’t a lot of knowledge. No, there was no blood sugar testing. It was Clinet test. which you could cheat on, because I knew how to cheat it was test tubes and a little fuzzy tablet. And if you put less urine in or more water, or you shook it before it was done bubbling, you could get a good color. And, and not that my parents punished me. But I wanted I wanted to achieve so I wanted good colors. And blue was the color I wanted. So it was pretty random. When I was in, oh gosh, probably 11th grade, the very first blood glucose meter came out. It was called the Ames eye tone reflectance meter, I have one still, it was really crude. It took, I think two minutes, it was a needle pin that kind of bounced on the graph. And it was so subject to operator error, you could plot the the strip too much or not enough and get different readings. But it was the first meter and it was $450 in 1970, and my parents bought one was covered by insurance. And you had to plug it in, you had to warm it up. And I took that the college with me. It gave some guideline that was better than urine testing.

Stacey Simms 11:11
And how often did you check in college? Do you remember if you had to plug it in and warm it up and do all that

Joanne Milo 11:16
in my freshman year? Not often. But by sophomore year, the Lifescan came out with their portable, that also I think that that was 45 seconds. How often did I test probably three to four times a day. Okay, it wasn’t a lot. I’m not sure I had no knowledge of nutrition, I had no knowledge of glycemic index. And it was a random thing is that meal looks big that meal looks small. Oh, sure, I can have a doughnut. And I’ll just take some sort of shot. So probably brand high for four years of college.

Stacey Simms 11:53
I imagine that you like many people that I’ve talked to who were diagnosed in the 50s or 60s, even into the 70s that you were you were not told what I’m thankful that my son was told and people are told today, which is you can live a long and healthy life with type one. What did the doctors tell you?

Joanne Milo 12:08
40 I’d be dead by 40. That was the understanding and and every time we heard that my mom would just cringe and start to cry. I didn’t take that in because I didn’t. It didn’t make sense to me. At that age, you don’t think about your lifespan, but it was in there. It was absolutely in there. I was instill am frightened of complications. And when I’ve developed things, I really have to work to control my my emotional reaction because it’s so deep in there that oh my gosh, you’re going to be in trouble. You’re not going to make it when I passed 48 There was a celebrations like Hey, I did it. So yes, we were even talked to pretty much anyone born about my age and diagnosed. And that’s what they were told it was 40 I think couple years later inched up to 50. And those were the numbers based on people in the 1940s. Right. So it was old data. And it was partly meant to frighten you, I think, to pay attention, although he didn’t have the tools to pay attention. But you’re supposed to pay attention anyway.

Stacey Simms 13:15
It’s a great point. Because when I think about what people are told today, there’s so much more an emphasis, it seems right if you’ve got a good endocrinologist on trying to live well, not scaring people. But we do have so many more tools. And I don’t want to skip around too much. But boy, you have embraced the tool. To the point where you know, you run this loop and learn group. Can you tell me a little bit about how that came to be? There’s this stereotype of Pupil you know, people over the age of 50 don’t want to adopt any kind of new technology, diabetes or not.

Right back to Joanne but first, I want to tell you about one of our sponsors Diabetes Connections is brought to you by Dexcom. And Dexcom has a diabetes management software called Clarity do you use this because for a very long time, for longer than I would like to admit, I thought it was just something our endocrinologist could use. But it’s really helpful. You know, now you have it on your phone. You can use it on the desktop or as an app, but it’s an easy way to keep track of the big picture. I find I use it when we’re adjusting things. I mean, I felt like for a while there was non stop, but you know 2017 So he has kind of leveled out at least for now on the growth and the basal rates in the hormones. Clarity really helps us to see longer term trends, and it helps me not overreact. The overlay reports put context to Benny’s glucose levels and patterns. And when you do share your reports with your care team, it’s so easy for them to get a great idea of what’s going on and how they can help. managing diabetes is not easy, but I feel like we have one of the best CGM systems working for us find out more go to diabetes connections.com and click on the Dexcom logo. Now back to my conversation with Joanne and we are moving into how she found all the DIY folks and the new technology

Joanne Milo 15:01
I love technology. I in my career, I had worked for a company that was early in the research of artificial intelligence, technology and machinery. And I was in marketing at the time, so I had to explain it. But my customers were university based research centers. And I was just really intrigued with expert systems. And I learned how to code in it and learn how to be knowledge engineer, and it was just really cool. My dad was an engineer, he adopted the first electronic calculator that was this gigantic machine. And it didn’t do very much, but he loved it. And he would show me how it was programmed. And so that stuff just really intrigued me. You know, when I could get the newest meter, I got the newest meter, because I wanted something better. And I was curious about how it worked. And so that’s kind of stuck with me all through. And so this was kind of 2014. I heard about Nightscout. And I heard you could build a rig. I don’t know. But that sounds cool. And I think this was, you know, the internet wasn’t I don’t even think it was on Facebook, not sure how the connection happened. But I was able to buy an Android phone and develop the rig that would show my blood sugar on my Pebble watch. So I had to buy all these things. And my husband says, What are you doing? And I said, Well, this is cool. and so I actually set up one of the first Nightscout builds in Orange County, California, working with JDRF at the time, because a good friend of mine was working there. And I said, can we set up a build session so people can see what this is. And she was all about it. One of our members worked for Microsoft and his son was a type one. And he was already aware of Nightscout. So he hosted it. And the morning we were set up to go JDRF international called her and said, can’t do this. This is not FDA approved. You said okay, we’ll do it in the future. But we’re set to go. That day, we put 14 people up on Nightscout. And really surprising to me, literally all the people involved with the development of Nightscout flew in for this event. So I got to meet certainly met them. And then Lane Desborough, and James wedding and West Nordgren. They all were there. And I didn’t have any sense of who they were. But it was just cool. John Kostik actually personalized my Pebble watch because you wanted to say your name. And he sat down and typed away and gave it to me. And so I just started poking around when there was some event because I thought this was important. I thought this was helpful. I could see it. And it also, I don’t know if you’d seen the Pebble watch, but they had programmed in little messages. So if you were 100, you’d get a, you know, woohoo message on your watch. If it went over 200, you get a message like oh, and that helped. It really made you smile.

Stacey Simms 18:17
He was a very heady time. 2014. As you mentioned, I believe that is the year that the CGM in the cloud Facebook group started, right, which brought the technology that a few people had been kind of working on and those names that you mentioned, it brought it to many, many more people’s builds started the community, the Nightscout community found each other and formed. And as you listen, if none of those names sound familiar, and you’re not sure what we’re talking about, I’ve done a lot of episodes, you can actually use the hashtag, we are not waiting all one word, and find those episodes with John Kostik and Lane Desborough. And the beginnings and Ben West. And it was really just a heady time. And it’s so great to kind of hear you bring us back to that Joanne,

Joanne Milo 19:00
it was so much fun. Yeah. I mean, I had to carry around an extra phone and have a little kit with me. Yeah, for something I didn’t need. I wasn’t monitoring a child. I was monitoring myself, but I like that was going somewhere. And I think when you built and the instructions were actually done, the original way to build Nightscout was developed by Gail DeVore. And so I’m still working with her on advocacy. But it was so early on how do you do this? And it took me days and lots of sweat to get error messages in then when you finally did build, you got a certificate in the mail. So I still have that and I think it was something like number 300 to build. And now it’s 1000s and 1000s and they’re worldwide and it’s it’s just exciting, and I knew it was gonna be more and that brings me to the group Lupin learn, which I started out Actually, before COVID in 2019, it was just a local support group that we called SoCal. loopers, because we were all in Southern California, and the covered anyone from San Diego up through northern LA. But we met in Orange County, which is the middle. And we actually met four times before COVID. On the first time, we were in a real estate office on a Sunday in their conference room, and actually been less drove up from San Diego. In and kind of VR, he just showed up. And a lot of people were asking questions, and we were Everyone brought their Mac, and we’re all trying to work together and figure out what we needed. And there were a couple people just starting there a couple have been on for a while. Next meeting, I think was UC Irvine local university, because one of the directors, there is a type one and I got him up and moving. I did one at a local hospital where we had about 2030 people. And then the director of the hospital found out we were doing something that wasn’t FDA approved, bowed had a hissy fit. And said never again, you are never ever ever to do this again, I suppose problem. And he said it’s not FDA approved is that what is the problem with giving us space to talk and stop responding. So really disappointed in that. But in January, I was approached by and Peter’s office, a doctor, and Peters is a significant member of our community and in Los Angeles. And she said, I’d like to host an event for you guys in Santa Monica. And do you know what we do? Because I’d still want to be yelled at. And she’s we know exactly what you do. And we think you deserve a place to meet. And we have patients that are involved, and we’d like to connect with you. So we did an event at the very beginning of February just before COVID hit, had over 100 people show up. Western Oregon did a presentation on kind of the history of this hashtag we’re waiting. Dr. Peters spoke, we had a side room where people were helping other people with technical issues. It was pretty heady. It was very exciting, very supportive. And then everything shut down for COVID. So we were still SoCal. loopers, I set it up on Facebook, and set up a few people as admins with me and we started developing videos on how do you do loop? What is it? What does the interface look like? What do they mean? What if you press here? What if that works? How do you manage ISF? How do you manage all the settings that you need to manage with a DIY loop? Right, and we started getting members. And then we started getting members internationally, because we set up a YouTube channel so that people could see the videos over and over again, and realize that we were SoCal bloopers worldwide. And that that renamed didn’t last very long. And then we rebranded to Lupin learn, and we grew.

Stacey Simms 23:01
I bet. So let me ask you since 2014, you know, a lot of the commercial technology has caught up, let’s say, remote monitoring, better hybrid closed loops, you know, at least the stuff talks to the other stuff, whether it’s in limited form or not, at least there’s some conversation happening now between pumps, OC GMs, do you think people are still going to turn to the DIY and the loop and things like that in the in the years coming up?

Joanne Milo 23:26
Absolutely. The FDA cannot because of their fears of safety allow the majority of people to sit tight boundaries for their control, they have to aim this at the majority people who have to stay safe. And that’s perfectly fine. It does a fairly good job. But if you’ve been doing DIY, you can set your target ranges, you can tighten control, and there are no limits to the things you can tinker with. And I understand the majority of new closed loop systems. Actually, all of the new closest loop systems are targeted at probably the average T one D and some portion of T Wendy’s that are in the segment that lane desperately calls the dark matter, the ones who don’t ever do anything. This at least does it for them. Any closed loop is better than no closed loop. And yeah,

Stacey Simms 24:24
it’s hard to remember sometimes, but we and I put the podcast audience in this group, and certainly the CGM and the cloud and the loopers you know, we are in the top what probably 5% have informed you know, use technology and I don’t mean that in some kind of pejorative way like those people don’t know anything. It’s just diabetes takes so much time and effort

Joanne Milo 24:44
that wrote a book and I one of my chapters was how much time it takes to be a diabetic and I think it came in somewhere between 10 and 20 hours a week. The covers, insurance, ordering your supplies, organizing your supplies. is running your stuff, changing sites, fixing problems calling doctors offices, it’s a part time job.

Stacey Simms 25:07
It sure is. Let’s talk a little bit if we could about your other passion, and that is talking about and helping people who are aging with type one. And of course, knock on wood, God willing, we’re all aging. This is really interesting, because as you mentioned, you weren’t supposed to live this long,

Joanne Milo 25:26
right? About four or five years ago, I’m now 67, the four or five years ago, I started looking at. And the reason I wrote my book was the fear of being in the hospital and being in the hospital and losing control. And being in the hospital in the hands of people that don’t understand the type one is different than type two, is a very frightening experience. And then I thought, as we age, the likelihood of us having to interface with the medical community increases, not only because we’re aging and aging, people have things that go wrong, but because of type one, complications that start to occur, or just fatigue, emotional fatigue, cognitive issues, or we just get tired of it. So I have a local support group and have adult type ones. And I tapped into about 12 of them who are also aging. Also were told we’d be dead by 40. And we started meeting at my house and saying what are the issues? What are we concerned about? I got in touch with Bill Polanski, who runs behavioral Diabetes Institute. He’s a psychologist and Paul Madden, who’s also a psychologist and a type one who worked with Johnson clinic for years, Joslin Diabetes, and said, Can you help me on this? Because I think this is an important issue. Nobody’s talking about it. And Bill Polonsky said, Well, what’s the problem, you get to live longer. As a donor, we’re grateful, honestly, we’re very grateful. But it’s not without its issues. And he sat back in what, huh? It’s kind of like people with HIV. They weren’t supposed to live this long, but they are now. And the medications have caused complications, the disease itself causes complications, but they’re living with it now. And they’re also aging. It’s the only the only similar diabetes entity that has issues with aging there that need to be examined and paid attention to one of my concerns was always being in the hospital and having people not understand that I have diabetes at all, or that it’s type one. And I taken a friend to the hospital because she had sepsis. I didn’t know she had sepsis. We brought her in, and all of a sudden, they converged on her in the ER, and I was sitting with her and these two young people showed up with backpacks and wearing dark scrubs. And their backpack said sepsis team. I said, Who are you guys? It was like, you know, men and black showed up on the scene. And these were the sepsis team. I said, Okay, what do you do? And they said, we take over, and we take this patient through all the people that have to help while that patient’s critically ill with sepsis. So I thought, hmm, I want a team when the team when you end up in a hospital, there should be a specialist who oversees all the care of all team Wendy’s in the hospital, there aren’t that many that they couldn’t be done. And I understand in England, there are T1D specialists. When a T1D shows up in the hospital, there’s a specialist, why we don’t have you here. I do not know. But I started thinking, Well, I would like a wristband when they go to the hospital, they put paper bands on you for allergic to penicillin, fall risk, anything that they think are critical as it can I have a T1D band, and I asked for a local hospital. Could you do that? Could you just order T1D bands and they said, look, it’s an interesting idea. We can do that in about five years. Oh, I went to a printer, and I get 500 printed, it cost me $70. And I just give it to friends and say Here, put this in your go bag. If you hadn’t up in the hospital, slap this on your hand. They won’t take off a paper bag. They’ll take off jewelry.

Stacey Simms 29:18
Right? And has anybody done that as it helped?

Joanne Milo 29:21
I have done it, and a few others have done it. I don’t know if it’s made a difference. But it’s certainly a sense of safety that you can stick out your arm and say, pay attention. This is important ask me questions. But don’t treat me like a type two. I don’t see that it isn’t something that is absolutely critical. Because type ones are different. We are 24 hours away from dead. So it’s it’s a critical issue. And when you’re in the hospital, even if they’re treating you for something that’s not diabetes, their attention is not on your diabetes, and that part can kill you or leave you in the hospital a lot longer than you need to be

Stacey Simms 29:59
with us. Book is the savvy diabetic Survival Guide. Do you cover more than being in the hospital? Is there other other points you’d like to make from that? Well, yeah,

Joanne Milo 30:07
it’s how do you effectively interact with your doctors? How do you effectively travel? And how do you just basically be prepared? There’s a packing list. So if you have to go to the hospital, it’s not an emergency, what do you need to pack, I thought it was going to be a pamphlet when I was putting it together. Because the other thing is being prepared. I don’t consider myself a worry, person, I just don’t like to be surprised. So I often COVID I’ve been kind of hammering on, be prepared, put up like a personal medical resume together. And I have that up on my website, that you can download some forms. And I’m kind of updating that now. But when you go to the hospital, you should have your medical list you should have what medications you take, and when you take them, because you can’t assume they know you. And so I have this whole little set of a how do you be prepared and worked with Nicole Johnson and we did a video on it. But I really don’t think people do it. Because it’s really annoying to pull together all your data, it’s just another task you have to do. But I think it’s a good task. We talked about go bags, just be ready to grab a bag and go. And I have a list of what you put in the go bag. And I think it’s important to so if you end up in the hospital, or if you end up in urgent care, you don’t know what’s going to happen, be prepared. And certainly during COVID, your family could show up with you. So it was just it’s not that hard once you do it. But it’s just the getting at it. That’s kind of a challenge. But I think it’s it will make your life easier in the long run. Even though initially it’s a little bit extra work.

Stacey Simms 31:43
One of the things that I think about a lot as I get older, is all of the health issues that just happened without diabetes that I assume haven’t been studied in people with type one, right? I mean, something like menopause, something like bone health. I mean, you’re talking about things that happen to your body from the age of say, 45 to 105.

Joanne Milo 32:05
Right. I mean, there’s there’s arthritis, so your hands don’t easily handle the devices in or if syringes No, it has not been studied. And I’ve been doing some projects with UC San Diego’s diabetes Design Initiative. What do you need. So this term, they’ve been working on a health care directive sheet that if you go to the hospital tells any health care provider that you deal with that you have type 1 diabetes, this is how you manage this is what you take, this is what you need. These are my comorbidities is my conditions that I have, in addition to type one, and they’ve been working on, they’re testing these little one sheets that you would take with you. But in my DIY community we’ve already developed. Because if you go, even if you go for colonoscopy, you’re under anesthesia. So I always bring information to show on how to that have a CGM. And this is what you can watch to monitor that this is what I take. And this is how I’m going to manage my pump. It just makes it easier. So we have someone just came to me having plastic surgery out of the country into Do you have any devices that will help and so I gave her all the documentation to make sure someone can understand what she needs. Yeah, when she can’t speak for herself. And as we age, the topic that we don’t want to talk about is cognition. When you go to the hospital, you get overwhelmed a little bit. And so you have to remember what to tell them as you age, you can forget what to tell them or you can forget a critical medication. So it’s how do you represent yourself? How do you help your advocate who or your spouse or whoever to help you, because you may not be fully in charge of yourself. And as we age is scary that as it is it’s kind of a reality, it is coming and the type one group that didn’t have all the tools is aging into this category so fast. I think it’s beginning to get some attention. There’s a lot of research going on at the University of Utah on monitoring and remote monitoring, and what do you want your advocate to do with you when they get a message? So I think it’s beginning I want it to go faster. Hashtag we’re not waiting. I want it yesterday, but I see the beginning of it. Aging with diabetes isn’t real pretty. For most people, some people escaped by and are fine and they really aged well and don’t have problems. And that’s wonderful in this demographic that were diagnosed around my time, they’re more likely to have issues. And no nobody’s studying. It’s just beginning. Earl hearses, doing a lot of work up at University of Washington as well, because he’s the type Wondering is aging. You know, maybe that’s what it takes is the people involved really carry this through,

Stacey Simms 35:07
it is a community at least since I’ve been part of it, which has only been 15 years, that does take care of itself. It you know it, that’s the whole we are not waiting movement, it’s like things aren’t moving fast enough. So people step up. And I don’t know how we do it for this cohort, right? For, you know, you can’t really do this on your own, but maybe just the attention that you and others are bringing to it, that we have to look at these things, we have to study these things. Because, you know, people with type one, thankfully are living longer than ever, you can’t ignore that.

Joanne Milo 35:36
Absolutely an end. It’s an unusual disease. It’s an urgent disease, and you self monitor, there are very few diseases that I know are like this, aside from the word control, which I don’t like. But self management is really fairly critical. And as you age, you’re going to have to depend on people you just do. That’s what happens over time. And people very often depend on their spouse for the spouse can die. I’ve told my husband he can’t wait to do No, no, you have to wait. You You can die the next day. You don’t need to be there. But who do you prepare? Yeah. Beyond that. It how do you continue to be resilient emotionally? How do you do all that, I would love to see a track in nursing school that develops a specialty and type 1 diabetes that makes them available and maybe even start with retired nurses who could step in and be chartered to be healthcare, allied professionals to help aging type ones, I think that might be the best source because it isn’t going to be the endocrinologists, it isn’t going to be the nurse practitioners isn’t going to be your brother or your child because you don’t want to bother your children. So it’s got to be someone who has an understanding already. I think that might be a way but I really don’t know,

Stacey Simms 36:58
we’ve talked a lot about your past and you know, kind of pre COVID What was going on? And how you’ve kind of kept things going during COVID? What are you looking forward to, in the next couple of years, your husband joke that you’re quite you’re kind of retired, but we’re gonna be looking forward to

Joanne Milo 37:14
retire doing 20 hours a week on Loop and Learn? Is, that’s interesting, because there are lots of changes going on in the DIY world, in the last month or two. And with changes with Dexcom and Abbott, an access to data, that’s the big buzz and the big fear. For those of us in DIY. It’s, it’s beyond fear. It’s how do we make sure we get access to data. And we’re trying to maintain dialogues, at least with one of the CGM manufacturers who will talk about how do we ensure that we get our data to our data? And how do we ensure that FDA allows us to have our data and why did they get to say we don’t. So if there’s a an advocacy issue that pretty strong and growing right now, I’m involved with that, because it feels outrageous to me that I should have to fight for my data, I understand the devices are made by somebody else. So I use their device, but it is my data, I understand the desire to keep us safe. Once again, it’s our data. And I’m hopeful that we will continue to have that access, I think DIY will continue and continue to develop. And it maybe hopefully, in some point in the future merge into a more mainstream where we don’t, I don’t want to do this, I would love to just buy something off the shelf, let my insurance pay for it, and have customer support, who I could understand who would actually troubleshoot if I needed that. We’re almost beginning to talk in my group saying, how much control are we willing to give up? How much excellence are we willing to give up? To not worry, I see a lot of work being done at the university level on multivariate sensors, which excite me because they look at lactate, and ketones as well as insulin levels. Wouldn’t that be cool? To look at a dashboard and see that information to a diagnose or figure out what’s going wrong when things go wrong? Or how to exercise better. So technology will continue. I’m chasing down a lot of the technology companies that are developing CGMS mostly out of this country. And it’s a little hard to communicate with them. But I just want to talk to them and say what are you doing different? You’re going to be microneedle patches, have been watching that for a while. That would be cool. Anything that takes away burden makes it easier, doesn’t hurt and works. Well.

Stacey Simms 39:47
Sounds good to me. Joanna, thank you so much for joining me for spending so much time with me. I really appreciate it.

Joanne Milo 39:53
Thank you for your care for this community. I appreciate everything you do and your podcasts are amazing. Thank you Stacey.

Stacey Simms 40:04
You’re listening to Diabetes Connections with Stacey Simms.
More information about the savvy diabetic and the loop learn group and everything we talked about. There are always links in the show notes. If you’re listening on a podcast app that’s easy to find. But if you are not sure, you can always head over to diabetes connections.com and click on the episode homepage. Every homepage, if you’re new, has the links that I talked about some other information about me and the show. And starting in January of 2020. I added transcriptions for each episode. So look, we do the best we can my transcription software doesn’t speak diabetes perfectly. I do go through and try to make it as clear as possible. But I do miss some things. Sometimes. My favorite I mean, it’s so funny, just as a quick side, how it corrects diabetes stuff, it does not like the term A1C, it corrects it to the most bananas, things like Hey, Wendy, or hey, I see. Or I mean, it’s I could put examples of that. And I should probably just do a blog post is through some of the wackiest examples of how it corrects things. My poor editor, his name always gets mangled. So if you want to go check out the transcription, that’s always at the episode homepage. And I also do have a really robust search. If you again, if you’re new, I’ve been doing this show for close to seven years now. And there’s a search box in the upper right, I would urge you to use that and find the episodes that are of interest to you or use the category we break it down by, you know, artists, athletes, technology news episodes, living with type one, which is very general, but you’ll see the categories there. And it may help you if you’re not quite sure where to start with more than 440 episodes.
Now. Before I let you go to quick pieces of housekeeping, I have a new guide on the website is all about getting organized with your diabetes supplies, it’s a way to clean it up cleared out where to donate that kind of stuff, it should pop up as soon as you go to the website, if you have any issues and you’d like to receive that just shoot me an email or let me know in the Facebook group, we are moving our other guides, I’ve been doing this for about a year or two. Now over to shop. If you go to the shop on the website, it’s kind of a bookstore right now. So you’ve got the world’s worst diabetes mom. And then you can also sign up for our other guides, and those are all free. But they are listed in the shop, I’m going to be adding more as we go on. That’s been really fun. And the reaction has been great.
And then the number two bit of housekeeping is, as I mentioned at the beginning of the show club 1921 is live, we are still making changes to how you sign up, those should be done by the beginning of February. It’s just a little bit of cleaning up. And if you’re not familiar, club 1921 is where Diabetes Connections are made. This is my new service, where you’ll be able to find diabetes events, any type of diabetes anywhere in the country. It’s us only for right now I did get a few people asking me about that right now us only go ahead check it out tool around. It’s a very simple website. But the idea is you would sign up once and then never have to come back. Because if events are added that fit your criteria, which you will enter, we will email you when new events are added that are what you’re looking for. If you want to add events. That’s a little bit of a different signup. And I think that’s where some of the confusion has come from. So I’m working on that right now. I’ll keep you posted. But boy, am I excited about that. And thanks for those who are testing it. I mean, it’s basically in beta right now. So if you are one of the dozens and it’s small right now, that’s fine, who have signed up or checking it out. I’m only sharing it at the end of the podcast here. I don’t want 1000s of people there yet. But I really do appreciate the help I’m getting your input is invaluable. All right, thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. We are back on a regular schedule newscast on Wednesday live on Facebook, YouTube and Instagram and then an author only podcasts on Fridays, and these longer interview episodes on Tuesdays. again next week is with Tandem. I’m Stacey Simms. I’ll see you back here soon Until then be kind to yourself.

Benny 44:07
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged