#669 David Panzirer - Helmsley Charitable Trust

David is a Trustee of The Leona M. and Harry B. Helmsley Charitable Trust. As a parent of two children with type 1 diabetes, his personal interest in this disease has led to the creation of a robust and highly developed program built on funding unmet needs. The Helmsley Type 1 Diabetes Program works closely with partners in private philanthropy, industry, academia, and government. David serves as a leader in fostering collaborations between funders and projects.

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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 to episode 669 of the Juicebox Podcast.

On today's show we're gonna be speaking with David pan zero. David is the parent of three children, two of whom have type one diabetes. He is also a trustee of the Leona M and Harry B Helmsley Charitable Trust. The trust does a lot for type one diabetes that you don't know about. And that's why I asked David to come on the show. It's a very interesting story, and a really great conversation that I think you're going to enjoy. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. Are you a US citizen who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry fill out the survey takes fewer than 10 minutes, you're going to help people with type one diabetes. There's actually an example of how that is in this episode. T one D exchange.org forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Learn more about my favorite blood glucose meter at contour next one.com forward slash Juicebox Podcast is also sponsored by us med get your free benefits check at us med.com forward slash juice box or by calling 888-721-1514 Would you like for your diabetes supplies to arrive the way they're supposed to? Without all that hassle? Check out us met.

David Panzirer 2:08
My name is David pan's you're going more details. You want to just ask away.

Scott Benner 2:14
Let's just keep going. David, let's start with this. You have a child or children with type one diabetes. Is that right?

David Panzirer 2:21
Yeah, I have three children. Two of my three children have type one diabetes. So my oldest daughter Morgan was diagnosed in 2007. She was six years old. She's now 21 Doing the math real fast. I have an 18 year old daughter Caroline, who was diagnosed four years ago. She's senior in high school getting ready to go play D one lacrosse up at Colgate next year. And knock wood I have a son who is 15 who does not have diabetes.

Scott Benner 2:48
Okay. Yes. Well knock on a lot of wood for you. So Carolyn was the second is that right? Caroline? Okay, and she's 18 now.

David Panzirer 2:58
She has she's senior in high school.

Scott Benner 3:00
diagnosed when she was 14. Yep. Okay, eighth grade. And you have do you have any autoimmune issues at all?

David Panzirer 3:08
Well, autoimmune issues. Yes. I mean, it's in my alopecia is in my family. There's a few other issues. But no, no t Wendy history at all. Okay, as far back as we can go,

Scott Benner 3:20
celiac thyroid?

David Panzirer 3:22
No, nothing like I mean, Morgan has thyroid issues as well. Okay. But she's T Wendy.

Scott Benner 3:28
Do you mind as is our her thyroid issues? Autoimmune. Does she have Hashimotos? Or is it no she

David Panzirer 3:35
hypothyroidism related to diabetes?

Scott Benner 3:39
Alright, so we'll start. How about your wife side of the family? Or their mother? I'm sorry.

David Panzirer 3:44
Yeah, zero diabetes, and I am married.

Scott Benner 3:47
Okay. It's always like, I never know. You never know. Yeah. Okay, three kids, and your youngest son doesn't seem to have any issues at the moment. Okay,

David Panzirer 3:57
so he's got issues just not.

Scott Benner 4:01
Well, that that I believe. So when Morgan's diagnosed? Tell me a little bit about it. How did it present and how did you guys figure it out?

David Panzirer 4:11
Yeah, so my wife Karen is a registered dietician that has her master's in nutrition. She's also a personal trainer. So she noticed that Morgan was drinking and peeing frequently and basically said to the doctor, you know, she dropped off a urine sample she said appease me and just test this. So she dropped off a urine sample. We got a phone call the next day, and I'll never forget it because I got a conference into that call. And the doctor said I'm really sorry to tell you this but your daughter has type one diabetes and plan to spend tomorrow down at the Columbia diabetes Center. I plan to spend the day there. And I can honestly tell you I knew absolutely zero about type one other than the stereotypes that sugar or something to do with sugar brightening up Right. So we went and spent the next day which was a Friday down at Columbia and learned how to prick fingers and drop insulin and do shots. And I guess the double edged sword of not being in DKA is we were sent home that night. And, you know, we knew nothing. We knew nothing other than, you know what the doctor told us. So we were sent home and the doctor was like, test these four times prick her finger these four times and here's the ratios and blah, blah, blah. And, you know, there we were sent home on a Friday night and it was terrified.

Scott Benner 5:36
15 years ago, you just had a they gave you what a meter and some syringes?

David Panzirer 5:41
Correct. No CGM. There was zero CGM at that point.

Scott Benner 5:45
And what she honeymooning at that point, or was she in like, hard need of insulin? Did Yeah,

David Panzirer 5:51
she she had an insulin requirement. But she definitely went on a honeymoon once we started giving her insulin. Okay, I always say the honeymoon is God's way of letting the parents freaking get up off the floor so that they can deal with this,

Scott Benner 6:03
it gives you usually a half a second to get your mind around it before. And then. And then there's a moment where if it lasts too long, you start thinking, could you just let's just get to the part where everything stabilizes, and and the needs are consistent. And

David Panzirer 6:17
yeah, that happens in about 21 years old, I'm finding.

Scott Benner 6:22
I think you're talking about a different stabilization. But okay. So was either of you work out of the home? Like, how did you initially start to manage? Because you were six, right? So yeah,

David Panzirer 6:35
so my wife was working out of the home. And thankfully, the school nurse Morgan was in kindergarten, the school nurse had another child in the school with type one diabetes. So we joked about it now. But back then Morgan was safer going to school than staying home with either one of us, because the nurse actually knew what to do. Yeah. You know, I read a lot, we learned a lot real quick, and began to understand how to begin to deal with this disease. And quite frankly, also began to see the ineptitude of our healthcare system, right. And what I mean by that is, you know, I said a little bit before when, when we were sent home, we were set Oh, the doctor said test these four times a day, after I went home and did a little more diligence. When we went back the following week, I was like, Why didn't you tell me that if I tested six or eight or 10 times a day, I'd have more information and be better equipped to deal with this disease. And the doctor looked at me and said, you know, what, we don't like to overwhelm people, parents of newly diagnosed. And I said, buddy, that you got that wrong, that's not your job. Your job is to educate and inform us and let us decide what we can and can't handle, right, but you pre judged us. And you prescribe four times a day, which I think anybody who would tell you is, you cannot get really good control of diabetes, with four snapshots and time per day, it's borderline impossible,

Scott Benner 8:00
I agree completely, I think the information needs to be given to people and then it's up to them to do what they can do with it to, you know, to to direct people based on least common denominator or your your desire not to overwhelm a few people, you steal a lot of information from a lot of people and you and you can never be certain of what people can and can't understand. And this the timing on this is crazy. But I just got this sent to me 15 minutes ago, it's a little drawing that I can't show you. It's a robot that this little boy Drew, he's the robot and on his shoulder, he has a juice box and some things that are trying to talk in his ear. And I'm the juice box in his photo, like in his drawing, and the and he's the things are telling him that he can eat whatever he wants. And I'm telling him as long as he Bolus is for it. And he's a small child who picked this up while his mom was listening to the podcast, like she never really she never played it for him or told him sit and listen to this. And she sent me this lovely note to discuss, you know what the kids picking up just from hearing the podcast off to the side. So I'm a huge firm believer, you give people information, and they have autonomy they can do people people will surprise you. You know, I think if you treat them as if you're expecting them to fail, well, then I mean, obviously they're going to they don't even know the basics at that point. So where did you get that information from 15 years ago, because the internet was not right with diabetes information back then.

David Panzirer 9:34
So one was the internet two was this other family that was in my daughter's school and had a child, their daughter had type one since she was 18 months old. So they were both six years old. And this family obviously knew a lot more about diabetes than I did. But what you're describing with the healthcare system, is really, you know, I don't want to bail out the doctor here because I think he's culpable. but it's also a system that prevents the doctor from spending the proper amount of time with me and my family to understand what we can and can't handle. And then they triage us, as you say, to the lowest common denominator, and ultimately that equals mediocre to crappy care.

Scott Benner 10:16
Yeah, no, I so I use the phrase on the podcast a lot. I tell people that they're getting do not die advice instead of live healthy advice. And more, more ironically, again, because I did not know how our conversation was gonna go. I already recorded this morning, with a mother of a 17 year old girl, everybody's 17 Right now apparently, the mother of a 17 year old girl who was on the show like a year and a half ago, she was on with two of her friends they met at school, they all have type one. They weren't similarly age, but they weren't too far off. If I'm remembering back when I recorded they're like 16, and 15, and 13. These girls that all met each other because they had type one. And they listen to this podcast. And so the mom comes on later, you know, to kind of fill in the other side of the story. And I was recording with her today her daughter was diagnosed in Ecuador, they put her on sliding scale, told her that this is it. Let her live for five years, this little girl with a NINE and a one C and the nines. And you know how the mom gets out of it. Eventually, she finds another family from this family from America who taught her different ideas. She was incredibly excited because this was her Common Sense was telling her all along, this was wrong, but she couldn't break free. And then when she finally even went online to find out and went back to the doctor, the doctor told her that's how they do it in America. This is how we do it in Ecuador, which obviously is, you know, it's Bolus backwards, right. And so she finally gets good information from another person, she's on her way that kids walking around with a five, five to a six a one C now, here's later,

David Panzirer 11:49
right, but the irony is how many kids have the ability of having an adult that can advocate for them, and then have the wherewithal to go and pick up and move get to, you know, get to somewhere where there's care, right? And then you think about places like Sub Saharan Africa, and we do a lot of work there. Those people are screwed before they ever get out of bed,

Scott Benner 12:07
right? No, no, it's terrible. And you don't have to go as far as as another country to find it either. Because I talked to plenty of people who are they get you know, some people try to attribute it to the age they're diagnosed that but I don't think that's it, I think that you need a somebody that's willing to stay in the fight with you for a long time until you can you can fight that fight on your own. And I think one of the one of the things that I really believe is that a child would would benefit from someone being helpful with their health well into their early to mid 20s. You know, like, just someone who can be a reminder or a sounding board or just you know, just just a friendly a friendly hug or a pat on the back sometimes let you know you're doing okay, I don't get it. I've interviewed too many people who got all through college with with a one C's and fluctuating blood sugars that are clearly not healthy for them. And it isn't until they find a life altering reason to do better for themselves that they actually do because it's so I mean life so repetitive day by day you start into something and wherever you start is sometimes where you stay.

David Panzirer 13:23
Yeah, I mean, look at the data from the tee when you change shows that people hit a realization around 25 or 26, which kind of makes sense with what you're saying, come out of college, begin to think about, Hey, maybe I want to start a family and think about your mortality, and then say, Oh, I better start taking care of myself. It is.

Scott Benner 13:43
Yeah, I'm sorry to cut you off. But I almost always see it connected to the kids, the love for another person, a child spouse, the desire to make a family, something like that usually makes people think, Oh, I have to I have to do better for myself. Which is an incredibly human thing to not want to do well for yourself. But to want to do well for yourself for someone else's, is fairly common. It's just not usually this emergent, you know, because

David Panzirer 14:09
what's got the other problem is you have to have access to the information, right? So you'll live unfortunately, even in our country, as you know, I'm sure geography absolutely dictates your outcome. And if you look at even things like CGM, well over 90% of prescriptions for CGM come out of the diabetes specialty clinics, which means if you live in rural America, where there's no diabetes specialty clinic, you're not getting it right. And I think you and I can both agree and anybody with half a brain dealing with type one would tell you that the most important tool to manage your diabetes is CGM period, full stop. Yeah. And yet, the large majority of people living with type one are adults who don't see an endocrinologist and live in middle America. And they're not getting access to these tools. Yeah. And you know, that's extremely problematic. And to me, that CGM is what really gives you the If you're educated properly, and then you're engaged, the CGM can empower you to go do the next step and take care of yourself. But I think you need to do all three.

Scott Benner 15:09
Yeah. So the podcast is, it's worldwide, it's listened to everywhere. And what I've what I've noticed is that I used to hear people say that you don't share your successes because they make other people feel badly. But I don't believe in that. I think that you can lead by example. You can give people different perspectives, create hope for them, and give them something to reach for. I've seen people get CGM that didn't know they existed. I've seen people adjust their finances to get them change jobs to get better insurance, and then come back to me six months, a year later, to show me how much better everything is going. Again, it's just, I mean, access. Obviously, there are some people who are they can change anything they want about their life, they're not going to come up with the money to buy a medical device like this. But it needs to be available to everybody, they need to have at least the hope that they can figure this thing out. And it's not difficult. I hate to say it that way. But I mean, I've set up a thing here where pretty much anybody can listen to it and come out on the other side with an A one C, at least in the sixes. And if you really understand the podcast, you get into the fives and I'm talking about no diet restrictions, just understanding how to use insulin. Yep, you know, it just it's unconscionable that, that we have people who don't have access to any of the things that they need for health. Alright, well, we were completely agreeing on this. Yesterday, I, I asked you to come on, because I think that I mean, I've been writing. Let's see, I started writing my blog in 2007. My daughter was diagnosed in 2006. The blog was been incredibly successful for a very long time. And then in 2015, I started this Podcast, the podcast, it clips, the blog, and in hardly any time it's it's a better medium for talking about things like this. And all this time, I'm aware of the Helmsley foundation, but I don't believe generally speaking that people who have diabetes know what's going on. So I'm trying to figure out how they get involved. I'm obviously well on the outside but I always see them they're supporting this they're supporting that they're sending money here that kind of thing, always diabetes related but prior to it just beginning to happen if they didn't do that, and one day it hit me like somebody must have started working there somebody's got diabetes, or are you the connection to that

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Are you the connection to that

David Panzirer 21:47
I am so long story short, my grandmother was on Leona Helmsley. So what happened was five months after Morgan was diagnosed in 2007, she passed away and named me is one of five trustees of what's now an $8 billion trust. So I knew absolutely nothing about you know how to get a device or anything into market. I knew nothing about nonprofit. All I knew was I had a little girl with type one diabetes who was you know, now struggling with finger breaks. And she only struggled for a few weeks she she kind of and I can tell you that story. But to answer your question, I am the impetus what happened was we were basically a $2 billion foundation overnight. And if you know anything about private foundations, we have to give away 5% of our money per annum to maintain your nonprofit status. Okay. So between the five trustees, we had a collective experience of philanthropic giving of zero. So here we were trying to get out of the gate, we hired a consultant who was obviously a specialist in nonprofit. And we all kind of picked something that was relevant to us that to get us off the ground. Because contrary to what was in all the newspapers, my grandmother did not set up her money to go to dogs. So obviously, given that my daughter was diagnosed five months earlier, I was like, you know, this is, this is my calling, this is for me. I had no idea how to do it. But I quit my career in 2008. And started doing this full time in 2008.

Scott Benner 23:24
So incredibly, David, your story of mine are exactly the same. Except I started writing a blog to help people with diabetes. Had I had an endowment, I might have done something different. But But But literally, I'm going to ask you, did you have that feeling inside that I need to help but I don't know how to help. Let me find other people who know how, and I'll support it.

David Panzirer 23:46
Yeah, so I, the answer is I came to that later I'm I made a very, very simple promise to my daughter who is six at the time. And I said to her, Listen, I'll help you in any way that I can. And you know, my wife will tell you if, if you want to get my attention, you got to slap me upside the head. Like I don't take a subtle hint. And these two events happening five months apart was a pretty good slap upside the head. I didn't really understand the enormity of my position. I didn't understand how big an opportunity that I had because I was naive. I knew nothing about the space. So yes, I did seek out somebody to help. I wrote a letter to Lee Iacocca, and I know that you're old enough to know who he is somebody who could you talk to have no idea who Lee Iacocca is that letter we ended on the desk of this guy Dana ball. Dana was running the Iacocca foundation at the time, we Iacocca, his first wife had died of complications from type one. Long story short, Dana became employee number two at the Helmsley trust and I did not poach him from Lee Iacocca he had left but he came to help me build the program. And he had spent seven yours in the space prior to come in to work with me. And you know, we kind of had a pretty good Dana was a visionary and I was kind of just line them up and knock them down kind of guy. And, you know, we created an art program that I think is a fairly robust, it's obviously evolved over the 16 or so years or 15 years that I've been at this. But yeah, I sought help right away, I started traveling and learning,

Scott Benner 25:29
okay, so you kind of immersed yourself in two different worlds, you have to find out if to start learning about diabetes and what the needs are. And you have to understand how to how to work in this charitable organization that you were not part of prior to that

David Panzirer 25:41
correct. And really understanding the, you know, how to, ultimately I knew that a business approach had to be brought to this. And that's what I pride myself on because I was like, the end of the day, we want to deliver a drug and devise a therapy, something to market. So I brought that approach. And I went out learned I spent 18 months living out of a suitcase traveling and learning before we ever wrote our first grant.

Scott Benner 26:07
That's amazing. It really is. And, and in fairness, your daughter's not diagnosed with type one, the trust would have went off and done other things, they wouldn't have had any connection to this at all. It's just correct that, do you think that that brings any comfort to your children? At all?

David Panzirer 26:24
No. I think it probably does. But they also know, it's funny, because my daughter would ask me sometimes, you know, Dad, I get these questionnaires that asked, What are you? What are your parents do for a living? And she's like, I don't even know what to put for what you do. I just know you do something and diabetes? And, you know, I used to laugh at that. And you know, I don't know, you know, I kind of I think you you can certainly ask them. But I do think that there's comfort in there. But I also think that they have come to understand the same way I have that my obligation is not just to my children, but to everybody living with this disease. And I've been given a huge platform. And, you know, I've got to dig in and do it. Yeah. 110% It's kind of the only way I'm wired. I understand. So I feel a pretty strong sense of obligation to everybody living with this disease. Not just my kids, you know, thankfully, my kids are empowered and they do their own thing. And I kind of alluded to this before, after three weeks of When Morgan was first diagnosed after three weeks, she had, we had a three month a three year old and a three month old at home when Morgan was first diagnosed. And I'll never forget this because in the middle of the night, Morgan's blood sugar's were like 400 or something. And she had shared a room with her sister Carolyn, and I brought her into the bathroom, she was kicking and screaming and crying, I don't want a shot, I don't want a shot. And I said, Listen, I either have to give you a shot, or I have to bring you to the hospital, but you need insulin. And she kind of listened to that. And then looked me dead in the eye. And she said Give it to me. And I said, What did she say? Give it to me, I'm doing it. And you know, it took her 45 minutes, but this six year old kid gave herself a shot in the stomach. And I always kind of joke around a little in that all of the pan zeros were all control freaks. And I think that was Morgan taking back a little bit of control. But from that point on, she did her own shots. She kind of picked my wife and I up off the floor and put us on her back and said all right, we're gonna go do this. That's incredible. And yeah, pretty, pretty strong kid. And Caroline, you know, 10 years later, was diagnosed at 14 and she had the benefit of having a CGM. Right. So she went, she was in trial on that for seven years. So we knew she had the antibodies. And you know, when she turned like 14, she was like that I'm done with Tron that I'm not doing it anymore. I said fine, you know, can't force her it used to be she used to get the 50 bucks for Tron that and that was a good enticement for her because like, that's not enough anymore. Long story short, I said, you don't have to do it. I said, we just got to throw a CGM on your week, every few months. I gotta make sure she's like. So of course we put a CGM on or that summer and you start seeing 220 And I'm like, Oh Christ. There it is. Yeah. And we started her on insulin right away and she enjoyed a about a three and a half year honeymoon. But we caught her very early and you know knock wood both girls are doing well. Yeah.

Scott Benner 29:37
Did she did you always expect that she would something from town that happened right? She had markers.

David Panzirer 29:43
Correct. She had four to four markers. Okay. So her chances were basically 99% within 10 years

Scott Benner 29:52
Yeah. So can you talk a little bit about that because trial nets been an on again off again sponsor they're not right now but I'm a big supporter of them.

David Panzirer 30:03
Yeah, so I think it's kind of this double edged sword, right? Because I would argue, a child like Caroline, who had all four markers, she had type one at that point, she just wasn't symptomatic. Right? If that were cancer, you would go and treat immediately. The fact is, we have nothing to treat with. So I think in order to begin to develop things to intervene with earlier, you have to have things like try on that, to do the screenings of these first degree relatives. But in my mind, I am 1,000% Convinced that at that time, Caroline had type one diabetes, she just had no symptoms.

Scott Benner 30:39
Was it valuable for her to have that information and for your family as well? Because that's the art. No, that's the argument. I always hear from people. They're like, well, I want to just live like, it's never gonna happen. If it happens. I know what it looks like, I'll see it coming. versus, you know, what happens when you find out early and you're able to manage? Like, I mean, you said for like, three, three and a half years, right? With?

David Panzirer 31:01
Yeah, so I'll give you the I'll give you the kind of both sides of that equation. So we did not tell Caroline. She, you know, my son, Luke was screen two. And Carolyn would always say, Well, Dad, why do I have to go to trial that Luke doesn't? And I would say, well, you're at higher risk to get type one. And she would always ask me, she was such an inquisitive kid, she would always say, Well, do you think I'm gonna get it? And I would always answer the same way, because I didn't want to lie to her. But I'd say I hope not. But I knew what the statistics were, but I thought there was zero upside to kind of saddling a child with that kind of burden. You know, and I wasn't going to do it. I mean, my wife and I already had that burden. And we were, I don't want to say we were fine with it. But obviously, that put us on high alert. So we did catch Caroline early, we did intervene with insulin right away. And I would say, in my opinion, that's why she had such a long honeymoon. To this day. Carolyn is probably on half of the amount of insulin that somebody her size normally would be. And it could be. She's an exercise fanatic. She eats really well. So it could be all of those things. Sure. But she's still on about 2025 units a day total for about 135 pound kit. Wow. That's crazy. Which is Yeah. But she'll see you take her off insulin and you see crazy excursions

Scott Benner 32:30
as well. For sure. No, of course. Okay. Yep. Just, you know, I mean, listen, we did it might we did it for my son, he, at the time didn't have any markers. We did not keep up with it afterwards, because he didn't have any. But then, you know, Geez, 10 years later, he, he got Hashimotos, which was what really hit him very hard. Because we couldn't, his symptoms were not classic. So he got hives from his, from his waist to his, like his neck. And that and that was it. If his body he loved he broke out in these painful hives. So of course, it got treated as like a topical problem at first and it took my wife and I sitting down and reading NIH articles until one day the word hives popped up in front of us associated to Hashimotos because he had the other he had other symptoms of Hashimotos. But they they kept talent, like we did maybe six months prior have his blood tests and like, no, it's fine. And, and we were like, okay, okay, it's not that then you know, you then you put it out of your head, and then something comes up and you think, oh, no, we've addressed that possibility already. And anyway, it took six weeks to figure out that's what he had another five, six weeks for the medication to start working. You know, in that time, they treated him with steroids and a number of other things when they thought it was more like an any histamine problem. And it was hard on him. He's a college athlete, he gained weight from the steroids. He couldn't work out because he'd break out and he pulled himself back together quickly. But it was a it was scary. And during that entire time, I thought, Wow, this was the moment ha his body got taxed. Somehow his immune system went the wrong way. This could have been diabetes. Like that's what I sat there thinking like he got he got Hashimotos. But this could have been type one. How about that? And it's just scary. It's never going to not be scary. I mean, you're probably going to wonder about your son until the day you go.

David Panzirer 34:26
Yeah, I mean, there are times where, you know, he gets cranky or irritable and I'm like, Go prick your finger.

Scott Benner 34:35
Before I get upset, let's make sure your blood sugar is not really something so the girls are older. I'm assuming they manage themselves pretty much are you and your wife involved?

David Panzirer 34:45
So we're involved peripherally Morgan is a junior in college. So she she very much likes the fact that we're on Dexcom share with her and that I'm I'm kind of an insomniac, I don't sleep very well. So I'm definitely on the night shift. And I think that brings her comfort. I will say, when we first got share, we had to have Morgan called me after two weeks of being on and she was like, Dad, we got to talk. And like, what's the matter? And she's like, you're driving me nuts. She's, so we came up with kind of rules of engagement as to when I'm allowed to reach out to her and when I'm not, and I begrudgingly abide by those rules, and that, to me, the Dexcom share changed our lives because what it was was peace of mind. For me, right? I could turn around and look on my phone and say, okay, she's not at a dangerous place. And it was a game changer for us for college as well.

Scott Benner 35:43
Yeah, the worry piece and she's she reasonably close to you or no? Yeah, she's two and a half hours away. Okay. That's how far my son is my daughter is going about 13 hours by car away. And that's a plane. Yes. And I'm worried, a little bit, but not as much as I thought I was going to be. But, you know, I've also been slowly handing her care off to her over years and years and years. And she really does, you know, over the last 910 months, she's basically been on our own, with me just kind of looking over his shoulder. Because I said, look, let's just practice like you're not here. You know, let's do what we would do. I did just order something called Sugar pixel. Which I think that's the alarm thing, right? Yeah, it's gonna be interesting, because it has that puck on it that will vibrate. And so we're gonna try it here at the house and see how that works. Because I don't know about your girl's mind. Not going to wake up in the middle of the night for an alarm. So

David Panzirer 36:38
yeah, so Morgan sleeps like a brick. And the one thing that we did, when we when she first went to college, we insisted on meeting the roommate and getting the roommates phone number. And it talks about irony, Morgan got introduced to her roommate, through a mutual friend, they met up, she lived a couple of towns from us, they met up and she, they decided they were going to run together. Morgan then further on, learns that this girl's mother is a pediatric endocrinologist. So I'm like, You gotta be kidding me. Like somebody's looking out for me. Right? Perfect. Yeah, so we were able to teach her about the Googong kit, teach her about the highs and the lows. And, you know, in northward in the three years that Morgan's been away at school, we've only had to call her once, okay, to intervene for a significant low that Morgan was not waking up to. And it was if I didn't do that next call was campus security, which I've heard horror stories from other parents where they broke down a door and the kid was just sleeping on the center. And it was an artificial Well, right. Yeah,

Scott Benner 37:44
you don't need that. It makes you it doesn't make the point though. Like, you know, a compression low which I'm, by the way, a little hopeful that G sevens form factor might take those away a little bit. But when it comes, but yeah, but you can see compression low. And you can trust it. When you're up the hall. You got to congressional I'll wait a couple of minutes, but not two and a half hours away that you're not trusting. Yeah,

David Panzirer 38:07
yeah. And not when you're seeing double arrows down and the word low on the screen. That's like

Scott Benner 38:16
yeah, that you're that you're not trusting. I can see that. I don't know how I'm going to actually feel when she goes. I know at the moment. I'm very comfortable with her understanding of of her care and how we do things. I might make her start listening to this podcast a little bit, but I'm sure she'll hate that about as much as your daughter didn't like you bothering her. I was wondering what the what were the rules that you and Morgan came up with about contacting her?

David Panzirer 38:43
Yeah, so basically, if I saw that she was high and stayed high for longer than four hours, I could contact her because we all know once you're high, it takes her a while to start coming down anyway, if she was low, and I didn't see that we plateauing or heading back the other way, after a half hour, I could contact her. And if I saw anything, like below 50 I could contact her. So those were kind of the rules of engagement. And usually I got, you know, the response of duh, or I got it or Yeah, okay, no, okay. You know what? I was cool with that because at least I knew that she was on it.

Scott Benner 39:21
Yeah. Isn't it funny how that makes you feel like even just anything? Just just say, Okay,

David Panzirer 39:27
I know life. Yeah, give me the sign away.

Scott Benner 39:29
Let me know you're on top of this a little bit. I did it this morning, Arden's at school and her blood sugar started raising I was like, I was like, Hey, what's up? She doesn't answer me and I'm like, Hey, have you eaten something? No, no answer. Arden Hello. What?

David Panzirer 39:44
What? Yeah, she on tandem or on the pod or what?

Scott Benner 39:48
Arden uses? Arden has an omni pod and G six. She is current. She's currently looping with her Omni pod. Sure. Yeah. So we actually are going to try on the pod five as soon as we can. get our hands on it and, and see how we like that. But I mean, she's been looping for a couple three years now. And it's been really terrific actually.

David Panzirer 40:09
Yeah, loop is amazing, um, Morgan loop for five years. And she loved it. You know, the one I don't know if you found this the one thing that we she hated carrying the extra Riley link and charging an extra thing, right? It's annoying. They understand with the new pod, you don't have to deal with that, because it's Bluetooth in your talk straight to your iPhone, right. But whenever we would stay in hotels, her her Riley Link must have gotten interfered with things, but it would always dropped out. I don't know if anybody else's. And I've been in the group and I talked to Pete Schwalm, you know, online and trying to figure it out. He said, I've never heard that. But inevitably we'd stay in a hotel and that thing would drop out. We switched

Scott Benner 40:49
to the orange link a year ago. And that's been more stable for but she just doesn't like having to carry an extra thing. So that's the impetus for trying AMI pod five or, you know, I guess we could always I guess somebody's in the middle of developing loop for for the dash pods right now as well. So,

David Panzirer 41:07
yeah, so we're funding and have been funding title to bring loop through the regulatory system and hopefully be like an FDA approved app that you can download an app store? Yeah. You know, my hope is that that happens, you know, this year? Really? I don't know. Yeah. Okay. But it's, it's a earlier version of loop, right? The DIY community is significantly out ahead of industry. And, you know, where, where the where type of whoop is, but it's still way better than even, you know, my daughter's switch to tandem control IQ. She was on the pod for a bunch of years, too. And we were looping within the pod as well. And then she started developing a rash to the Yeah, I mean, not just a rash, like blisters, like it was really bad. And we tried all the barriers in between. And finally, she's like, this is a pain in the neck. I'm done with this after something else. That makes sense. Yeah. Do we swap that? Dan,

Scott Benner 42:11
do you think that I know, you're you're probably just funding it. But do you think the process of getting tide pool through FDA the first time would would open up the possibility of getting like a an updated version of the algorithm through quicker the second time?

David Panzirer 42:25
Yeah. So look, I'll give you my understanding of what the FDA is looking to accomplish here. And I think it's a pretty interesting thing that they're trying to do. Right. And this is me talking about Helmsley trust. But my my, my point is, the FDA has themselves an issue in that they know that there's a bunch of people out there five to 10,000 people out there that are running around on hacked insulin pumps, they have absolutely no ability to regulate this. And quite frankly, it would be a public relations nightmare to try and shut this group down, and they wouldn't be able to do it. So they have very much been supportive of the nonprofit's Helmsley JDRF and others bringing tide pool loop through the FDA process. I think and these are my words, not the FDA words, but I think what the FDA would like to see is have tight pool be kind of the sandbox that the DIY community can play in and have those improvements filter up through tight pool to legitimize them, right. The fact is, the DIY group will always be three or four steps ahead of anybody else, because they don't have to meet the rigor of the FDA. However, as you know, with the folks in the DIY community, every single one of them or people like us, except, at least in my case, I lacked the expertise to do what they've done, but they clearly have it.

Scott Benner 43:58
Yeah, no, I mean, the the amount of time it took for someone to take art in the version of Luke we were using, which was making adjustments with basil. And then suddenly it was making boluses to make adjustments and I can't even tell you how well it works. It's astonishing. I mean, she could almost Artem could almost ignore what she's eating and not Bolus for it. And I think that the auto Bolus version that she's using now would at least keep her under 200 which is

David Panzirer 44:25
that's impressive. Yeah,

Scott Benner 44:27
I think it's fast especially

David Panzirer 44:27
with today's insulins because the insolence takes so long to start working

Scott Benner 44:32
Yeah, no artists been using a pizza for a very long time. I find it to be a very smooth acting like kind of kind of I don't know there's not as many peaks and valleys as she had with other insulin in the past. So interesting. I like it and and we know how to use it. So her settings I mean, it's all set. The whole thing is settings right? Like if your settings are right, and you get your settings to match your Novolog or your a pager or whatever, Humalog whatever you're using. That's the whole thing. I mean settings Pre-Bolus eating meals, understanding the impacts of different foods, you know, understanding that fat and protein needs insulin is pretty much, you know,

David Panzirer 45:09
yeah. But Scott 99% of people don't understand half of what you just said, yeah,

Scott Benner 45:13
they do if they listen to this podcast, don't worry. We talked about it in a way that I'm so sorry to tell you a little bit about me. I guess it maybe you don't care. But no, I do care. I appreciate it. I started writing that blog very long time ago, it was completely just raw nerve. I didn't know what I was doing. I was trying to help. I was raising money for JDRF. And I was just trying to draw attention to what was going on. It all kind of started when I first had the idea, like, I can't help I'm not a doctor, I'm not a scientist. Now my daughter has this thing I can't help with. Maybe I can draw attention, like put eyes on it. I'm a good writer, maybe that'll be the thing. And then one day, I read this article about this person who was on the Northeast Corridor line overnight, and they got thrown off a train for being drunk. And in the morning. Yeah, in the morning, when people came in to go to work. One person recognize this guy's not being drunk, but being low, because they had a sibling who had type one. And they stopped and save a guy's life. And I thought maybe I'll write something on this blog that one day, we'll reach out into the world and meet a person that will meet my daughter and help her and was my first thought of after a couple of years of writing, I started to realize that it wasn't enough to just spread awareness, for me at least. And it wasn't enough. People just understand it. Like I didn't, I realized there's a lot of comfort in community. And I do think community is incredibly important. But I realized one day, it's not enough just to know someone else is low at 2am. Like, that's comforting. And it's nice. But what if we could all figure out how not to be low at 2am? And I started thinking about why am I not good at managing my daughter's blood sugar's my daughter was two and she was diagnosed. So I start, I start writing this blog when she's three, you know, 3456 years old her a one season the eight. So I don't know what I'm doing. I always feel like I'm killing her. You know, I'm a stay at home dad. So it's largely on my shoulders. And I just thought I have to figure this out. So I went to my daughter's endocrinologist to her nurse practitioner, actually. And I said, If I gave you a magic wand, what would you one thing you could do for people with type one diabetes, what would you do and she said, like, without hesitation, she said, I would make them not be afraid of their insulin. So I went about writing about not being afraid of insulin, which was just me talking myself into not being afraid. And then once I lost the fear, I started just looking at the things I had learned, I step back, like so instead of being in the fight constantly, I decided just to get kind of macro and step back and try to figure out I thought I must have learned something in these years, you know. And before I knew it, I started putting these things into place. And ra one C 987. I couldn't stop it from coming down. Like, you know, I live for years without being able to move it. And then suddenly, by doing the things I knew to do all of a sudden, and not being afraid of the insulin, Arden say once you just dropped right into the fives. And one day, one day, I said to my wife, I have a system. I was like, I don't call it anything. It doesn't have a name. I don't It's not written down somewhere. But I know these things. And if you do these things, this is what happens. So I switched my blog over to writing about how to manage yourself. And it was a big leap. Because, you know, you're, I mean, you tell people, you're not giving medical advice, you put disclaimers all over everything. And I'm just sharing my opinion of whatever you got to say. But it's still scary, you know, to put it out into the world. But I thought it was what the I believed it's what the space was missing. So what I was noticing is that I knew people who had great agencies and stable blood sugars. But even if they were in the space, they never talked about how they got them. They'd always keep it light and community and I'm here for you and support, which again, I think is great, but again, not enough. So I just went I just went all in on it. And I would start getting 123 letters a month, hey, this blog, this blog is really helping me my agency's coming down, I have more stability. And then in 2013, someone approached me to write a book and wasn't about diabetes. I wrote my book, and I was doing the the media on it. And I was I was getting off stage at the Katie Couric show. And Katie, Katie, she grabs me in the wings and she says you're very good at talking to people. And I said, thank you. And about a year later, I realized nobody was reading blogs anymore. And I thought, well, Katie Couric says, I'm good at talking to people. So I made a podcast about it. And now that thing that used to get me a note or two a day, I probably get a dozen of them a day now, that's awesome all over the world. So,

David Panzirer 50:07
you know, it's kind enough to in that, you know, I always say and people read if you don't have type one or you're not involved with type one people don't really understand type one. And there's no way to really explain that well, and I tell people, I said, Listen, your, here's the best way I can explain it to you is you take a drug insulin, you're dosing that drug, many times a day, that drug can kill you, and you make all these decisions 99.9% of the time without the benefit of a clinician. And if you get it right 60% of the time, you're doing amazing. And it's, it's so hard to understand the burden of this disease. And I think part part of it is what you said, which is the education and knowing what to do, but part of it also is, is having a support system. And I think you know, very rarely, in this country, at least, we don't treat the whole person, we just treat symptoms, and the mental health thing, I guess, if there's a silver lining around COVID, it's highlighted two things that we've been interested in for a really long time. And that's telemedicine and mental health. And COVID has kind of highlighted both of them. But when you look at diabetes and type one specifically, the burden is never ending. It's 24/7. It's you know, and people just don't, it's very hard to wrap your head around that unless you're whether that,

Scott Benner 51:29
yeah, so what I what I think I've done with the podcast, because the podcast started off, I just thought I was gonna like, I was so bad. In the beginning, I tried to read a blog post, like into the microphone, I got like, 20 minutes, and I was like, this is stupid, and I stopped. And but what it's kind of become is, it's my knowledge dispensed out over conversation, because I realized, like, I'm not going to if you wrote everything down and bullet points, nobody could remember, right? It's out of context, you don't have any background, your perspectives all skewed. Also, you believe all the things you've been seeing for years, which are likely I always talk about like, people are just chasing ghosts, they don't really know what's happening with their blood sugar. They they see things they believe, usually they're aberrations. So what I ended up doing was I said, though, here's what I'm gonna do, first of all, I'm never going to interview anybody who's already in this space. Because their practice than they are stilted, and they have a talk and they give their talk. And I've genuinely still stuck to that. I put people on who just have diabetes, and I talk to them. And we just have conversations, they go where they go. And when I hear something that I can respond to in a way that will help that person and I believe help the people listening, that's when the conversations dig down a little bit, about 200 episodes into it. I firmly believed if you just listen to the 200 episodes of the podcast, you're able to see what come into the 60s. And I was right because people do it. But I started thinking, Alright, this is crazy. Like, I can't ask people to listen to 200 episodes of a podcast to have some like health success. So I reached back to a CDE, who has type one diabetes, who I'd heard on the podcast a couple times, and I always jived really well with her. And I said, I'm gonna take these, these these moments, these these ideas that I know are singular, that are spread throughout the podcast, and will you help me drill down and put them in specific episodes. So we made this thing called diabetes pro tip. And since then, we've added defining diabetes, because I found that you'd be shocked at the terms that people don't understand. And moreover, even if they've heard them, they don't have like everyday knowledge of them. We did that we did. Gosh, variables, how people eat, I do a whole afterdark series where people talk about the things that nobody talks about, you know, having type one and being a heroin addict, or a sex worker, or you know, by having bipolar, like things that people really live with, that nobody talks about. And you know, so they get sprinkled in, but mostly the show goes up four times a week and three times a week. It's just a conversation with somebody. And then on the fourth day, there's something that's a little more drilled down with Jenny awesome CD and it just David, it just works. It's you can jump in anywhere. I've heard from people who are high school dropouts, to people who are physicians themselves who can't manage their own or their kids diabetes doesn't mean it doesn't matter if you're a parent or an adult living with type one. This podcast will help you. And it's the it's the only thing I've seen so far. That the only I mean, where it falls short is that I don't know how to I can't afford to translate it and other languages. Like that's really where it falls short. And I get contacted by Spanish speaking people particularly. And I just tell them like I don't know what to do. I'm sorry. But I do think I do think there's value there as well. Anyway, I there's a young girl right now who is a grad student who is going to do she's she's building a survey to look into how the podcast helps people as awesome. Now, I'm just incredibly proud of the whole thing. So I do think my point is, is that you can, you can help people. I alluded to it earlier about about lowest common denominator alike. But the way I see it is the way we talk about is if there's 20 kids in a class, you don't teach to the top five, you don't teach the middle, you teach to the bottom, because everybody can understand that. But I just don't believe in that, I think you say what needs to be said, and then find a way to say it to all of those people. Before I started recording the show, and I just had the blog, people would put me in contact with people. And I would kind of walk them through how to I basically, David, I have about a 45 minute talk in my head, I could get you on the phone and level your blood sugar out. So I was doing this one day with this girl. She was very young, she was a drop out,

she had a baby, the baby had type one, I gave her my best explanation about how to Bolus for meals. And she said, I'm sorry, I don't understand what you're saying. And I was in this moment where I thought I either have to hang up on her and tell her I'm sorry, I can't help you. Or I have to find another way to say this. And so I just took a deep breath. And I started over again. And I came up with this kind of allegory for tug of war. And how Bolus thing a meal is like tug of war. And I gave it to her over the phone. And now it's in the podcast. And there are people who I respect very greatly who think that that's the best way they've ever heard a meal Bolus described. And it only came out of panic. Because I couldn't hang up on this woman. Her kid was three, four years old, she was short diner, she's trying to help this baby. She doesn't know what to do. And I just I couldn't bring myself though, just tell her I'm sorry. So I just tried again. And it led me to believe that everyone can understand this stuff. So I see my job as distilling these ideas that I had back on that blog down so far that anyone can pick it up from anywhere. Let's start running with it.

David Panzirer 57:08
So I just got I couldn't agree more with you. And I certainly believe that our health care system does cater to the lowest common denominator. But I also think that we sell everybody short. Yeah. And, you know, we're actually funding research in Sub Saharan Africa in type one diabetes, where, number one, we're educating people around type one and some of the things that we're finding very small studies, but some of the things we're finding is just T one D specific education lowers a one C two points. Sure. I imagine, right? Just just education. We're now running, as far as we know, is the first study ever in Tanzania, with CGM with these people, and everybody was like, oh, you know, they're never going to be able to do it. They're not going to understand that they don't understand numeracy. And I'm like, this isn't that hard. Like we can teach them and support them, and hopefully empower them. But if we don't try how are we ever going to know you're just selling them out? Before you ever try? Yeah, trials happening right now? TBD. Whether it works. I'm willing to bet a lot of money though. It's gonna work.

Scott Benner 58:15
I don't even think the math is important. I'm gonna say like, for me, if you listen to the podcasts are heard part of the podcast exists because I just I'm not good at math. And the stuff they told me in the hospital, I was like, What am I? I can't do this. So I mean, especially with CGM, right, it's just really, it's just timing and amount. It's putting the right amount of insulin at the right time. It's impacting one bell curve with another bell curve, you just you know, I talked about it a million different ways. It's making sure you have enough people blocking so they can't get to your to your quarterback like it's all just, you know, I've talked about like being a mind pushing on a wall, you just need the, you need equal amounts of force coming from both sides to hold each other up. So nothing collapses. And when you start talking about it as like, insulin to carb ratio and insulin sensitivity factors and everything people's mind, my mind shut off. The first time somebody said glycemic load index to me, I thought, I don't care about that. I'm never going to pay attention to that. And yet, if you if you cornered me right now and said, Scott, five minutes left in your life, here's a person with type one diabetes help one more person, I'd say timing and amount, you have to Pre-Bolus your meals, you have to understand the glycemic load and glycemic index of your foods. But I wouldn't say it like that I would have I would say that different foods have different impacts on your blood sugars and despite their carb counts, for instance, 10 carbs of this may require a unit while 10 carbs of that may require two units. I would never say to somebody you have to understand the glycemic load and index of your foods because it's it's your eyes glaze over. It's off putting. It just is and so when so when people are in this situation to begin with and you describe eloquently earlier, I say I felt to me like somebody hit me in the face He's with a shovel and then started yelling algebra at me. You know, my kid, my kids, you know, my kids got a disease, she weighs 17 pounds, she's two years old, my life had been pretty perfect up until about five minutes before that no one had ever been sick. And now people are telling me about all this stuff, and using all these technical terms. And now in hindsight, I look back and realize they didn't even know what they were talking about. They were just regurgitating something back to me. So, you know, like, that's not where you meet people. And I'm a huge believer in that you have to find people where they are and give them the information that they need. And I realized now in hindsight, I treated that girl on the phone differently because she was a dropout. And because she was a young mom, but that's not even fair or accurate. It's just who she is. Right? And she needs to hear it a different way. And, and I needed to hear it a different way. And so does everyone else. And it turns out that there's a distilled way to say these things to people that everyone can understand. So

David Panzirer 1:00:59
I think you hit the nail right on the head as far as you really got to meet people where they are, and speak their language, whatever that may be. And I think that we do a really good job of listening to the very vocal minority without ever asking the majority of people, what do you really need? Sure. And it's one of the things that we've been really pushing hard on, is to really understand what what do you what do you really need, as opposed to what do I think you need? Oh, yeah,

Scott Benner 1:01:29
no, I, I genuinely think that most of the effort being put into diabetes and maybe other things as well, is misguided from some some knee jerk reaction that someone had at some point. You know, don't, don't tell people about your successes. It'll make them feel bad. What if it made them feel aspirational? instead? What if you what if you didn't rub it in? Instead, you said, Hey, look at me, here's how I used to sit on the podcast. I'm an idiot. If I can do this, you can do this. Right. And that, to me is it's aspirational. And I've had people, there's a woman who was on the other day, she's got type two, or kid has type one, they both use the podcast, and they're both having great success. Type Two diabetes,

David Panzirer 1:02:07
every single marketing campaign in the world is based on people wanting to mimic what they're seeing on the screen, right? Yeah, it just, why is it different? I'm sorry to interrupt. No,

Scott Benner 1:02:16
no, no, you're not interrupting at all. It's even. You have to get past this stuff. Everybody gets stuck on like, it's easy to see that people like to argue about what they eat, for example, like everybody gets very tribal. I eat this way you eat that way that everybody wants to fight. And before you know it, you think everyone fights about this? Well, everyone doesn't fight about this, the people online that you see are fighting this, they're a very small percentage. Most people are not at home concerned as to whether or not you're vegan, or you eat only protein or whatever the hell else. No, but this is the vocal minority that was talking yes, no one cares, generally speaking, but we get, we get, you know, kind of we can get tricked into it. And I'll tell you that I'm very proud of the moment when somebody came to me early on in the podcast and said, You can't talk like this the people. I said, Not only am I going to talk like this to people, I think it's imperative. And if I'm not going to do it, then why am I wasting my time shoveling this regurgitated content into these people's mouths? That you guys have been shoveling for 10 years in this space? I mean, how many times can I read an article about the best recipe for Fourth of July for your blood sugar? Like it's enough already, right? Like, let's actually teach people how to use their insulin. It's the whole game. It just it just made sense to me. So anyway, I got all upset there. Sorry.

David Panzirer 1:03:31
No, no, I totally get it. I understand. We have to, you know, the status quo is not good enough. And let's just face it. We have failed miserably as a health care system in this country. So why not try something different?

Scott Benner 1:03:45
Yeah, no, I agree. I'll tell you that right now, when people come into my Facebook group, which has maybe 25,000 people and at this point, all helping each other with insulin type twos type ones, really, it's a great space. I have a little intake form, and more and more and more. How did you find out about the podcast, my doctor told me? Wow. So that's impressive. It is really, it's really getting there. And I'm sure you know about

David Panzirer 1:04:10
one of our one of our new projects that I just want to plug for a second. So we started it started way back. And in 2018, I started thinking about it with my team. And I'm like, we really need the Geek Squad for type one diabetes, right Best Buy's Geek Squad everybody understands this. And I actually reached out to the founder of BestBuy his name was Dick Schultz. I think he's like 82 years old. I had to write him like a four bullet email so that he could decide whether he would take my call. So bullet number one was I don't want your money. You know, and I came up with three other bullets about what I wanted to talk to him about. And he was sharpest attack. He's like, David, you know, you don't really need to Geek Squad because what's out there and what's coming, you can do almost all of this virtually. So then when you look at the lower social work economically challenged are the social determinants of health that really screw people in rural areas, we decided that we're gonna go and try and pilot a, what we're now calling what's a brand new organization, we acquired a company at the end of December, we spun them out into a new nonprofit called blue circle health. And blue circle health is going to be in a nutshell, it's going to be kind of like the St. Jude's for type one diabetes, but for the lower socio economically challenged. So what if we create a system that doesn't have to cater to the fee for service model, and doesn't care about where you come from, but we're actually going to put patients front and center we're going to do the right thing by patients. And that's what blue circle health is going to try and do, we're going to pilot in one location. And we've done a lot of diligence. You talked about meeting people where they are and understanding what they want. I've learned that the hard way, by having preconceived notions that were dead wrong. But we spent a decent amount of time now in federally qualified health centers, in areas where people with lower socio economic status live with type one diabetes, and we talked to them. And we had consultants to ask them, What do you need? How can we help you. And after speak with a whole bunch of them? The irony is, one of the biggest things that came up almost 92% of the time, was we need help navigating or insurance, ie I can't get my supplies, right, we have a system healthcare system today, that doesn't actually enable care, it puts barriers in front of people. And, and I believe, you know, systems like things like prior authorizations, or reviews, or third party reviews or denials, they're totally put in place so that half the people go away. And don't even try, right, when you have a group of people who don't have the wherewithal to challenge the system. And their set. 92% of them are saying we have insurance, but I still can't get my stuff. Right, and you're fighting about a drug that you need to stay alive with insulin. That's just, that's a pretty huge indictment on our healthcare system. And we're going to try and go out there and be an example. For at the very least, remove all that stuff, we're going to remove all the barriers to care. So if we, if you can't get your supplies, we'll deal with your insurance company, where we call it, we're calling it the insurance cost the errors, I don't know what we'll end up calling it but in a nutshell, it gives me my when I need it without all the hassle. And we're gonna go and really deliver care, right? If you're poor, and you don't have a phone, we'll give you a phone, we'll pay for the service. But you have to lean in a little bit and allow, you know, allow us to help you. So one of the major pieces of this is obviously going to be CGM, and teaching people and having peer coaches that come from their area speak their language, with with type one diabetes. And the we have a project going on right now that's piloting this in a research study. And as you might imagine, it's unbelievably successful, because people are being engaged in their own backyard with a trusted peer. And you alluded to it, I think a little earlier, there was so much clinician bias that we hear all the time, the example you just gave of your own bias, just speaking to that woman, right. We all have it, providers have it. But it's really selling people short. And we're going to try and attempt to change that paradigm.

Scott Benner 1:08:42
You're going to save people's lives. I am. I'm often reminded of a mother of a shed a lot of kids, I think seven if I'm not mistaken, and someone on Facebook, put her in touch with me one time she had diabetes, and she was 16. She was in her mid 30s. She was starting to have problems from from her type one. And she was online looking for help. And we got on the phone together. And I gave her the talk I gave her my 45 minute spiel, I told her what to do. She had a CGM. She was using it all wrong. day or so later. She sends me a note. She says Can I call you back? She calls me back. She's crying. And I thought, gosh, what happened? You know what I mean? Like why she's so upset. Turns out she wasn't upset at me. She was upset at everyone else. And then she showed me her graph her nice stable graph overnight where her blood sugar was 90 all night or whatever it was. And she said, how could I have lived this many years? And no one told me this. And I said, I'm sorry. I don't know. I said, you know, I all I can tell her was like just move forward from here, you know, but she had so much like seething anger inside of her because she had lived so unhealthy for so long. And people told her that this was the best she could expect. And it's not the best she could expect. And people in Ecuador don't have to use the sliding scale or whatever other crap stuff people tell each other. because they don't have the answers for you, or they don't know how to talk to you or they don't have the time or whatever the reason is that they won't spend 45 minutes with you to fix your, your health issue. That's amazing that you're going to do that. I think that's really wonderful. That you

David Panzirer 1:10:14
know, I'd actually love to hear your 45 Minute Talk. Obviously, not now. But I'd

Scott Benner 1:10:18
be happy to give it to you sometime. I, I'm more proud of that talk than anything I've maybe I've ever said out loud.

David Panzirer 1:10:24
So is it out there on the recording that I can find? No, I just

Scott Benner 1:10:27
give it to like small groups. I don't make it public, usually, because it's, at least when it's alive. I can answer people's questions. And if there's confusion, you know, if I, if I had a little bit of a demo, if I had a little bit of indemnity between me and my, you know, this is just me. Yeah. So it's a tough situation, but I'll tell you what, I'll get into a plane or a car, I'll go anywhere and give it to anybody. You can quickly change your understanding of how to use your insulin and, and very, very quickly stop the highs stop the lows, stop the overtreating of lows that create more highs, you just have to understand how insulin works. And it's just it's not difficult. It's I find it kind of easy to explain. So, you know, you let me just

David Panzirer 1:11:13
cut it. Yeah, I got it, I have a question for you. And that is, so one of my daughters and her friend are going to be interning and doing a little bit of diligence for me at the trust around and I've got them. I think it starts next month, actually in May. But what I would love to do if you're up for this, and obviously we can take this offline, is I'm trying to create kind of this, understanding what people need and how to help them. So we've got a lot of these interviews that I was talking about through the consultant, we have them recorded. So I'm going to have my daughter and her friend go through all of these recordings is upon to them and see if they can distill out some common themes as to what's needed. We know there are but I want, I want these kids to do it. I wondering if you'd be up for it to have that 45 minute talk with the two of them? Because I'd love for them to distill. And I would I would join you because I want to hear it. I'd be amazing. Because I would love to hear their version of what they distill out of your 45 Minute Talk.

Scott Benner 1:12:19
Okay. No, I would I would be honored to to do that. I really would. Yeah, I would appreciate them very much.

David Panzirer 1:12:24
So I will definitely set that up. I gotta figure out the exact dates, but it would be amazing to hear my own daughter will be one of them. So it'll be amazing to hear her point of view. And her friends point of view who she's known since kindergarten, right?

Scott Benner 1:12:40
Oh, no, please, you let me know I'm in. I would. Okay, that helps is great. Actually,

David Panzirer 1:12:46
I will follow up with you on that front for sure.

Scott Benner 1:12:48
Excellent. So can you before I let you go? Can you give people a couple of examples of things that you've funded or gotten behind and the changes you're seeing them make in different areas?

David Panzirer 1:12:59
Sure. So one that I'm quite proud of? Is that back in 2010, Helmsley, we went to JDRF. And at the time, Jeffrey brewers CEO, Aaron Kowalski was working there. And I said, guys, you're building a system. You know, they call that the artificial pancreas. I hate that name. I call it automated insulin delivery system, but you're building a system that has a gigantic hole in it, and you're gonna hurt people. And that hole was the sensor. Because at the time the sensors suck, I'm sure you remember. The seven the seven plus? Yeah, we had them all were terrible. Yeah, they were terrible. And so I said, we're gonna put up 12 and a half million dollars. I'd like you guys to put up 12 and a half million dollars more in the fund industry to go accelerate, improve centers. And at the time, JDRF was like, I'm not so sure we need to do that. They reconsidered and they joined us. So we funded Medtronic and we funded Becton, Dickinson. Becton Dickinson center scientifically failed, Medtronic center is actually still on its way to market. It's the one that was just approved overseas. I don't know what they call it now on the market. It was codenamed Zeus back then I don't know what its name is now. And Helmsley back then went on to fund Dexcom G six by ourselves. Okay. So G six what we did at the time, if you remember G six was meant to accelerate the acetaminophen interference. So Tylenol interference with the center was a big deal in G five G six membrane eliminated that. So we funded G six. And you could talk to Kevin Sayer over a Dexcom. And he'll tell you that that probably accelerated their timelines by a couple of years well, of getting that the people and the funding. You can argue why would we fund industry and why would we do that? And the truth is, if we didn't do cadence would have been really slow. But once you had funded like a Medtronic, and then we fund the Dexcom, it forced everybody in the field to accelerate and do what they were doing quicker. Right. So we did that. And then I'd say, we've got a whole bunch of things. But I'd say one of the things that I'm most proud of is very early on, when Dana ball was working with us, we were running around asking where's the data to show how people with type one are really doing in this country, and turned out it really didn't exist. And we had an back then I'm sure you came across this when autumn was first diagnosed. Back then it was, the common thought was, oh, you just take your insulin, you're all set. And that was from payers to the FDA, everybody thought that? Well, we created the T one day exchange registry, which now I don't know how many 1000s of people it has now, because we split it out into its own 501 C three. But I remember going to the FDA when we had data on 3000 people, and the data, and these are the best clinics in the country that were in this right, the average a one C and the best clinics in this country was 8.5. I know. And and the percentage of people who had had a severe hypoglycemic event, or a severe event needing third party assistance, was 10%, within the last 12 months needed third party assistance, right? I can tell you that, we went to the FDA, and I was very fortunate enough to get introduced to Margaret Hamburg, who was the commissioner of FDA back then. And Jeff Shuren, who is still running CDRH. They got in the room. And I remember just like 20 or 30 people from FDA, and we were presenting data, I think we had 3000 people showing them that type one was neither safe nor managed. And I'd like to think that that changed the paradigm of thinking for both payers and the FDA to say, hey, you know what, this week, we have to do so much better, because this is just not good enough. And even today, there's still only roughly 35% of people meeting their ADA recommended targets for type one.

Scott Benner 1:17:06
And it's very hard to get people to take those surveys, which so by the way, I'm very proud to tell you that I personally have put more people on the T one D exchange registry than all of the other influencers combined. So thank you, I am thank the people who listen to this podcast, because they're very good about it. Well, thank you. Thank you. Yeah, it's, it's hard. It's difficult to get somebody takes less than 10 minutes and you feel like you're, I guess they look, the information is really going to help people. This is a great example of how it helps people. So I think

David Panzirer 1:17:34
a lot of times people don't understand. They think, you know, people are going to try and monetize their data, because so many people are trying to do that by No, no, I think the fact that we were a nonprofit. And if anybody did a little bit of diligence, they'd understand what our motives are, and it's pure. At the end of the day, we want to improve outcomes, period,

Scott Benner 1:17:53
right? No, I hear that. Okay. Well, that's amazing. I have something I'd like to ask you when we're not recording if you if you have a minute afterwards. But do you have anything else that you want to do to say or do you think we did a good job?

David Panzirer 1:18:06
Well, I think so. But you're the I'm like the episode number 5000. So you tell me,

Scott Benner 1:18:12
trust me if I'm asking you if it was alright, we're done, and it's good. I really appreciate you doing this. I hope maybe you'll do this again with me sometime.

David Panzirer 1:18:20
Yeah, of course. What happened to you?

Scott Benner 1:18:28
First, I'd like to thank David for taking time out of his schedule to come on the show. I hope he comes back. This was a really great conversation. I enjoyed it. I'd also like to thank us Med and remind you to go to us med.com forward slash juice box or call 888-721-1514 To get your free benefits check. Get your supplies easily from us med thanks also to the Contour Next One blood glucose meter, go to contour next one.com forward slash juice box to learn more about my favorite blood glucose meter, it darn little thing is accurate.

One last time. If you're a US resident who has type one diabetes, or you're a US resident who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. And take the survey you heard David speak about it earlier. It's an incredibly easy thing to do this very beneficial for people living with type one. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Are you on Facebook? Check out the private Facebook group for the Juicebox Podcast. It's called and you're going to think Well Scott, where did you get this name from? Juicebox Podcast type one diabetes. But you don't have to have type one to be in there. You could just you insulin of any kind really, diabetes is, you know, into diabetes. So head over there. There's plenty of people just like you having great conversations right now about so much I can't even list it. It's just a great space. You could also find me on Instagram, but you know, the Tick Tock wherever juice be just look for me if you if you get the apps, you look for the Juicebox Podcast. If I'm there, you throw a little follow. And speaking, you're following. If you're listening in a podcast app, but you're not subscribed to the show, or following the show depends on which app you're in some say subscribe, some say follow. Please do that huge, huge benefit for the show. And you'll get new episodes lickety split, like magic. They'll just pop up on your phone and they're there if you want them. Subscribe and follow, follow and subscribe.

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#668 Defining Diabetes: Carb Absorption and Digestion

Scott and Jenny Smith define diabetes terms

Scott and Jenny Smith define diabetes terms In this Defining Diabetes episode, Scott and Jenny explain Carb Absorption and Digestion.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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 to episode 668 of the Juicebox Podcast.

On today's episode of The Juicebox Podcast, Jenny Smith and I are going to define carb absorption and digestion. There's no more to it than that. That's what we're gonna do. I mean, there's way more to it than that. But as far as the explanation prior to the conversation, that's all I've got for you. Please remember while you're listening, that my voice sounds terrific today, and that you should always look and that you should always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Are you a US resident who has type one diabetes, or is the caregiver of someone with type one, because if you are, you can support the T one D exchange and research for type one diabetes by going to T one D exchange.org. Forward slash juicebox. When you get there, join the registry fill out the survey the whole thing takes fewer than 10 minutes and you are going to help people with type one, you're also going to support the Juicebox Podcast. I don't even want to stop talking now. My voice sounds amazing in my ears. T one D exchange.org forward slash juicebox. This episode of The Juicebox Podcast is sponsored by us med. US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor from the pod dash, the number one fastest growing tandem distributor and the number one rated distributor index. com customer satisfaction surveys. US med is a place where you get your diabetes supplies from most of us use them right? Most of us are using some sort of an online Wait a minute, are you not getting your supplies online? Okay, hold on. First of all, it's super easy to get your supplies online. You just are you're not doing this. Alright, hold on a second. Let me get a sip of water I gotta explain this whole thing to you. So we used to use another company, we've actually used a couple of them. And in the past they've been you know, spotty, let's say spotty in their customer service. But us med prides themselves on their white glove treatment of their customers. US med has an A plus rating with the Better Business Bureau and they want you to get better service and better care than you're accustomed to getting now. US med always provides 90 days worth of supplies and fast free shipping. You can get a free benefits check right now at us med.com forward slash juicebox or by calling 888721151. For us Medicare is everything from insulin pumps and diabetes testing supplies to the latest CGM including libre two and Dexcom G six. They accept Medicare nationwide and over 800 private insurers. This 888 Number is dedicated for Juicebox Podcast listeners. Call now 888-721-1514 Get the service you deserve. Get your supplies without a big hassle. US met us med.com forward slash juicebox look everybody these supplies are going to be common forever and ever. I'd love it if you had it set up so that it just happened and you didn't have to think about it. That's how we have it here. And it is a real it's a weight lifted. It's another thing you don't have to think about. Let us med think about that. You go live your life

okay, so we fixed your computer.

Jennifer Smith, CDE 4:08
We did thankfully Yeah. Good for us.

Scott Benner 4:12
Do you want to start with carb absorption and digestion as the defining or antibodies? I let it be ladies choice as I'm going to have very little to add on one of them for sure.

Jennifer Smith, CDE 4:28
How about we do carb absorption.

Scott Benner 4:31
Okay. Well then, in fact, Jenny, we are going to define carb absorption and digestion talked about that. Okay, can I tell you that the first time I want to be honest. The first time you said to me that the body digests things in an order. I had never heard anybody say that before. I knew

Jennifer Smith, CDE 4:57
I remember telling you that. You told Utah in order.

Scott Benner 5:02
So I'll tell you what I remember,

Jennifer Smith, CDE 5:04
I might have to clarify, because I don't even remember

Scott Benner 5:07
what it is like, please don't put that on me I never said. So what I recall is that we were talking about pizza as an example. And right, and we were talking about how, in people's minds, pizza is an example could be a is a food. But if you really stop and deconstructed pizzas cheese, it's sauce, it's salt, it's oregano, it's flour, right? It's all these things, if you put sausage on its protein, if you put, you know pepperoni on it, it's protein, that's sort of an idea. If you put pineapple on it, it's a simple sugar, like getting these things, right. And you were describing why people get low blood sugars from pizza, because they look at the slice. And they, Oh, it's 35 carbs, they Bolus these 35 carbs, they hooked down this pizza, the, because that's how I eat it. If the rest of the first slice goes fast, and and then of course, the the insulin is working, working, working. But because of how digestion works, the pizza, the impactful parts of the pizza aren't being absorbed by your body right away. And you I if I'm wrong, stop me. But you said that the cheese is the most difficult part. For the body to break down, it starts with that it takes a long time, it's not pulling out carbs do I remember all this correctly,

Jennifer Smith, CDE 6:30
kind of it's sort of yes, in a way. Because, right, the fat in the cheese, and the protein and the cheese and whatever else you might have also put on top of it. I mean, it could be, you know, the Italian sausage and whatever. And the multiple cheeses that might actually be on top of it, right. But the body sort of breaks things down in a general sense to completely like process, right, almost like a blender, if you will. But if you have like the pineapple, if you only put the pineapple in your stomach, simple carb or simple sugar, so it's going to break that down really fast. Whereas when you start mixing that with the other macronutrients, like fat and protein, such as in cheese, you're really going to get a slowdown of the carbs, that you really only see the pizza as being or anything really that you've identified as a carbohydrate, you're gonna see it, you're gonna count the carbs, you're gonna say, Okay, I'm just gonna go ahead and give my insulin right now. And that insulin, it's meant to work. The way that you know, rapid insulin specifically is sort of designed is to work with carbohydrate digestion, it's got this in out sort of bell curve of action, which is kind of how carbs get digested and carb decarb. Even those are a little bit different, depending on the kind of carpet is right. But pizza, for example, being Yes, it might have carbs in it, but those carbs really get slowed down when everything gets blended together. And the body is trying to also work on, I guess, simple way to say it is a harder to process,

Scott Benner 8:13
right? The macronutrient. So if so, if we took the slice of pizza as an example, and it just had, I don't know sausage and cheese on it, and we eat, we eat it, our body processes it in one bell curve that we could see. But if we rip the cheese off it and eat it, the bell curve completely changes.

Jennifer Smith, CDE 8:33
Right? That's a great way to describe it. Absolutely. In fact, something like the pizza crust with just the sauce, which pretty much that's just all carb unless you've added fat and whatnot to the crust, then yes, that's going to be a faster digesting type of food or meal because you really have added nothing to slow down. So you have a typical carbohydrate bell curve and in kind of out within, let's say about three ish hours, right? Whereas when you start adding those other macronutrients, they take proteins and fats take longer for the body to process you might actually have sort of a double humped kind of felt curve maybe, right, it might go up a little bit, or it might actually remain pretty smooth and steady. Especially if you've dosed your insulin in a split type of fashion, or extended your Bolus out. You might actually see something that's pretty stable for a while before it slowly starts to go up later, where things like fat and protein, those may be the end result of all of a rise up later. Not necessarily truly just carbohydrate,

Scott Benner 9:43
right? I just not that. I mean, I just think we should so bell curve. If you think about a spike that you see on your CGM where you're going along, you know, okay at 90 and then all of a sudden you go up to 140. It hangs there for a little while and it curves and it comes back down to 90 Again, if you can picture that in your head, it sort of looks like the outline of a bell. Yes. So the carbs, it's an impact of the carbs, the carbs start the impact, they impact heavier and heavier and hit harder and harder and harder. The bell at the top of the bell gets formed, the carbs start to be digested, so less impact. And at the same time, if you're lucky, there's another bell curve going on, which is the insulin. Yep. All right. But the insulin and the insulin is not working as hard at first, it starts to work harder and harder and harder, which is why you always hear me say something like, you know, you got to, it's all about timing and amount, you have to put in the right amount at the right time, you have to line up the impact of the carbs with the action of the insulin. However, I don't know I've said it, like 1000 different ways at this point. But those impacts have to be fighting the fight at the same time. Correct, right. But aside of that, just just sort of keep in mind that if you Hey, it's Scott, I know I put the ad at the beginning of the episode today, I trick you a little bit. But I still need to pop in and tell you that US med offers a free benefits check. And you can get it at us med.com forward slash juice box, or by calling a special number just for Juicebox Podcast listeners 888-721-1514 us med carries everything from your insulin pumps, to your diabetes testing supplies, go check them out. All right, sorry, I have ordered a new computer.

Jennifer Smith, CDE 11:30
Oh, that wasn't my fault. I did nothing.

Scott Benner 11:37
So but but what we're saying is, is that if you so if you eat the pizza, and it doesn't have cheese on it, your body can get right to breaking down the dough. And so you're gonna start seeing an impact sooner. But if you mix the cheese in with it, fat and protein slow down the digestion process, and your body sort of focuses on the things that are more difficult to break down first. So it's breaking down stuff that doesn't have carbs in it necessarily. So is there's less than

Jennifer Smith, CDE 12:07
breaking it down all at one time. But because the carbs get mixed in with these foods that are harder, and it's breaking everything down, the whole slow the whole process down really

Scott Benner 12:19
significantly slow it down. And significantly

Jennifer Smith, CDE 12:21
slow it down exactly which again, as your example when you then take a Bolus all up front for something like like pizza, or the other foods that would fit into that, you know, same category, you're really going to most likely get a low blood sugar, and up needing to treat the low blood sugar, that treatment might even be a little bit slower. Because you have this food that's a heavier type of food already in your stomach. And then you end up going up later, not only from treating the low, which you needed to do, but also now the food is actually hitting, and you got impact of insulin more upfront where you actually needed it stretched out over the course of how long that was taking to digest.

Scott Benner 13:10
And that's why Chinese food can be difficult, right? Because it can be a mixture of a slow and a fast impact. Yes, you can almost have what you do have, you'll have two bell curves, you'll have quicker faster ones and slower, more drawn out ones. And you have to hit both of those differently with insulin differently. Yep, yeah. So. So now that we've kind of like walked through it, pizza is a great example. Because it makes the point but so if you have anything now, like, just think about all the different foods you're eating, if you eat them singularly, they have an impact, you know, across this curve, when you start mixing them together on a plate, you're now we were talking about this in another episode, you have different lines of I don't know reality happening, you have the bell pepper reality and the mashed potato reality and the meatloaf reality all kind of happening at the same time. Now, it's not. I mean, I have to say, like anecdotally from managing art, and it's not like there are these three different crazy, I don't know, things happening, they kind of blend together a little bit, you kind of almost can't see it with the naked eye. But it is true that it's working that way. It's different foods differently.

Jennifer Smith, CDE 14:21
And if you have paid enough attention, I've said it before, if you've paid enough attention to the 80% of time food that you eat, right what you've eaten over and over and over. If you've paid enough attention to that, you can get your timing down. Yeah, pretty pretty well, right? And in most mixed meals setting something like a you know, brown rice and I don't know broccoli and grilled chicken, right? I mean, that's still unless your portions are exorbitant or you've had them slathered in butter or some type of other fatty kind of, you know, dressing You are going to have the pretty typical bell curve of action. It's just when things get heavier in fact, especially and or heavier in protein and maybe lower in carbohydrate at the same time or lower glycemic. I mean, it brings in a whole carbohydrate to carbohydrate. Not all carbs are sort of digested by the body the same way, right? A good example being plain old white bread versus something like a sprouted grain like in Ezekiel bread, for example, right? Very unprocessed, versus really, really broken down. There's nothing left in that white bread. It's kind of like eating sugar. Really, right.

Scott Benner 15:50
It's funny, because I find it if you choose a whitebread that doesn't have high fructose corn syrup in it. I find it easier to Bolus for because I know what it doesn't right away and it takes a lot of insulin, but it doesn't it's not like these real kind of like, like the grains don't take more time. It doesn't stretch out the process like No, not at all. It's but it's a ton of it's a ton of insulin like you're making me think about, like I just I Googled, this is one of my favorite things and I'm not sure it's real in the world or not, but that there's that there's silicone in McDonald's french fries. So I Oh, is there silicone in McDonald's fries, the chemical sharing a link between finding a cure for baldness and fast food french fries is di meth low poly Ciloxan, which is a is reportedly found in the silicone that is added to the oil McDonald's cooks is famous French fries, and it's from 2018. So not not really my bigger point. My bigger point is that when you start looking at processed foods versus natural foods, this is a big deal. Because these foods are generally speaking going to be higher carbs. And there are things in them that your body is not really supposed to be dealing with. You know, you wouldn't, you don't I'm saying like deep frying is a great example to me. Because if anybody's ever like deep fried something on their own, you fill the you know, you fill the pot up or whatever, and you fry it. And when you're done, the pot has much less oil on it, but you don't think about it that you're the one eating the oil. Right? It's over.

Jennifer Smith, CDE 17:27
It's like it magically just just went someplace. It's like when you boil water and the water like sort of evaporates, right? You kind of think, well, they must have just like evaporated educated

Scott Benner 17:37
did by the way, it's up in the air now, right? Like it's still there, this oil is still it still exists on the world in the world, it's been absorbed into your food. And so if you go back to the pizza explanation, where fat slows down digestion, then fried foods are going to slow down digestion too, because you're gonna be taking in oil. And in a in most settings, it's not going to be like real expensive, cold pressed olive oil that they're making your french fries. And it's going to be whatever, like, you know, Jack's easy to buy, you know, stuff that these companies can use for their oil. So you're getting that in there, you're getting whatever is in French fries, you know, and I'm using this as an example because it's here's this from a 20 2015 article. Let's see if it shows you how McDonald's fries are made. There are real potatoes in it. That's nice.

Jennifer Smith, CDE 18:32
hatefully Oh my goodness.

Scott Benner 18:35
Do you add any type of flavor guests so they put in flavors and oil blends be flavoring? Like there's all kinds of stuff? What kind of oil do you use, we use an oil blend made from four different kinds of oil, canola, corn, soybean, hydrogenated soybean, those are four oils, I wouldn't eat. And I am not nearly the healthiest person in the world. And so I'm assuming there's salt. You know, a lot in

Jennifer Smith, CDE 19:02
thankfully, salt is like one of the least dangerous things on the whole list. Fries,

Scott Benner 19:08
Chinese, like maybe you'll get some iodine. Exactly knock your thyroid down. They use the right kind of salt. But I just think that when I watch people online speaking and talking about the problems, they have bolusing for their meals, they only ever think of it as the number on the carb count. Like the the rest of it just usually doesn't come into play for them. And I mean, I just think I don't think you should eat any certain way and I'm not telling anybody how to eat. I enjoy McDonald's french fry. But you have to understand it. You can't just blindly look at this meal and go McDonald's says that this is the 86 carbs and dial it up and think that's going to work out for you because it very likely is not going to

Jennifer Smith, CDE 19:53
right i mean it brings in a bigger a definite bigger piece of it. The lack of detail in education that's provided, because majority of people diagnosed are sent home and told, count your carbs, take your insulin, maybe they're told to Pre-Bolus by 10 minutes. And it's sort of left at that. Most places unfortunately, don't even go into use of potential split Bolus ideas, or whether you're on multiple daily injections or have the use of a pump with extended Bolus and those types of things. There is there's no definition to these type, this type of carbohydrate, or these types of carbohydrate are these groups here, you can expect quick impact, sort of moderate impact, really slow impact that gets into glycemic index. And from the get go, if we're not giving this information. That's where the confusion starts to come in. But if I was just told the count carbohydrate and that every single apple out there was 12 grams of carbohydrate, well, great, fabulous. So then I go and get my big old honey, crisp apple, and it's 12 grams of carbon.

Scott Benner 21:11
Not really. And I say good luck using a 12 gram count for a big apple because you're gonna be in trouble. All right, where you send your kid to a pizza party, and the kid has three slices of pizza and you're like, well, that's 90 carbs, you give your kid 90 carbs worth of insulin, that insulin is going to crush them long before the pizza catches up. Some other stuff, we know that

Jennifer Smith, CDE 21:31
most kids are not sitting at a birthday party, right? I mean, it's a trampoline park or something. Right? Yeah,

Scott Benner 21:38
the balance of the timing and the amount is just it's more important in different situations. It's also Alright, hold on. So from online, how are carbohydrates digested absorbed? During digestion, starches and sugars are broken down both mechanically through chewing, and chemically by enzymes into the single units glucose, fructose, and or galactose. That sounds like a transformer, which are absorbed into the bloodstream and transported for use as energy throughout the body. Which, if you listen closely to that sentence, what it means is, is sugar gets put into your blood. So yes, and so this happens at a different time. The end here, very quick googling How soon after eating our carbs absorbed, the denser the food, meaning the more protein or fat it has, the longer it takes to digest notes, Dr. Li simple carbohydrates such as plain rice pasta, or simple sugars, average between 30 and 60 minutes in the stomach. So you put your insulin in at noon, it starts working really well. 20 minutes, it starts working 20 minutes later starts working really well at 45 minutes, this pasta, except this stuff might not even be impacting you yet, or not impacting you enough to combat this.

Jennifer Smith, CDE 22:51
And it's, you know, these are the pieces of science education, I guess, that? No, I mean, unless you really Google something yourself. Most people wouldn't know, unless they've gone for some type of a, you know, nutritional biology degree or something that they get the understanding. I mean, most people don't even know that starches essentially start to get digested in your mouth, right? I mean, one of the enzymes is amylase, it's like a salivary based thing that starts to kind of break things down. Thus, a really good reason, then even if you don't remember any of that, it's a really good reason to Pre-Bolus Most things that are simple carbers, right, baseline carbohydrates, and then, you know, other other types of carbohydrates actually, kind of get moved further down. And in your small intestine, you actually have a whole bunch of other enzymes, which, at this point, I would have to look them up, I would have to go back to my nutrition physiology books to look exactly which one they are up, but majority of their those kind of come in through the small intestine. And so we have, we have to wait out this process, right? Your stomach is like a big turning place, and absorption gets done in your digestive tract. Right, so the more things that you put in with carbohydrate, that are longer in terms of the body breaking them down, such as fats, the more drawn out that whole process gets,

Scott Benner 24:26
I wonder, and this is just me wondering if you're constipated. Does your body slow down digestion? Does it say it didn't come out? So we're not going to worry about it right now. We're just digestion just keep happening and the constipation just keeps being forced from what's in your stomach. Right?

Jennifer Smith, CDE 24:44
I mean, constipation is usually there are many reasons for obviously too many to kind of get into and discuss but your body is still breaking down and it's still absorbing. But I've had quite a number of people who've definitely said As soon as I go to the bathroom my blood sugar's seem to even out a lot better who have who have said that, you know, I have trouble with constipation or a lot of the people that I work with through pregnancy, essentially, that's a typical thing in pregnancy is constipation.

Scott Benner 25:18
I remember saying it once, too. And you looked at me a little weird, but I swear to God, I knew what I was looking at. Like, if Arden gets constipated, then she disappears in the bathroom and comes back. You're like her blood sugar is gonna, sticky blood sugar is gonna start going down. Yeah, I mean, that's one of those things I can't prove.

Jennifer Smith, CDE 25:35
But I bet you have hindsight. Yeah,

Scott Benner 25:37
I would, if you made me bet. I'd bet in that direction for certain. Yes. So have we done justice to this idea?

Jennifer Smith, CDE 25:45
I think so. I mean, in a general sense, it's yes, I think so. Yeah,

Scott Benner 25:50
I just want people to understand that the time it takes for food to go through your body impacts where you're going to need your insulin. I mean, I think in very simple terms, I think that's important to understand, you can't just have this blind idea that, you know, it's gone out of sight, out of mind with the food, it must be doing exactly what it's going to do right now. And because, you know, on the flip side of that, you have to understand how insulin works to an insulin, really, you're in the same problem as it just doesn't start happening immediately at full speed, you know, the foods not impacting you right away at full speed. And, either is the and so on. And so you just have to, I mean, you said it earlier, but it bears repeating, you have to eat these things, you have to watch it happen. And then next time believe this is about how it's gonna go. You know,

Jennifer Smith, CDE 26:44
that's exactly right. And again, sometimes those normal things that you eat over and over can then give a little bit of insight to something that you may choose at a restaurant or a friend's house that you haven't necessarily had before. But if you're looking at them, you can gain a little bit of perspective from what you've done and say, Ah, this looks kind of like something I've had at home. And I would have probably done this type of a Bolus strategy for it. So I mean, the best that you can do is give it a try, which is kind of what we all do.

Scott Benner 27:13
Right? Exactly. I always tell people, somebody asked recently, can you do a pro tip on eating in a restaurant? And I said, it doesn't eat a pro tip, the better it tastes, the more insulin it needs.

Jennifer Smith, CDE 27:26
Possibly a drawn out

Scott Benner 27:27
fashion. Yeah. Yeah, cuz that's probably going to be butter that's making you happy. Yeah. All right. Well, I appreciate you doing this with me. Thanks. Yeah, absolutely. Want to thank Jenny for being here. Don't forget that Jenny works at integrated diabetes.com. If you'd like to hire her, you can. I like to thank our sponsor today us med get your diabetes supplies, easily. It doesn't need to be a big hassle. And with us med it won't be check them out and get your free benefits check at us med.com forward slash juice box or by calling 888-721-1514. There are links to us Med and all the sponsors in the shownotes of your podcast player and at juicebox podcast.com. And don't forget to go take that survey AT T one D exchange.org. Forward slash juice box. When you support the sponsors, you're supporting the show. At this point, I don't even remember how many defined diabetes episodes there are. But there's got to be more than 40. If you're enjoying them, you can find them at juicebox podcast.com diabetes pro tip.com, or by joining the private Facebook group Juicebox Podcast type one diabetes, and then heading up to the top I want to call it the I always want to use the wrong word. And then I hold on a second, I'll tell you what it's called when you get the the Facebook page is a private group. It's really terrific. I think it's got like 24 25,000 members in it right now. And at the top. Not here this, there's a feature tab. So you have to answer a couple of questions to get in. But once you're in there, go to that feature tab. And there's a list of all the defining diabetes episodes, all the variables, all the how we eats the Quickstart guides. If you're just starting with the show, the Pro Tip series is a list of popular requested episodes popularly requested episodes if I'm going to use English, special episodes, Scott and Jenny's where they're called ask Scott and Jenny, people send in questions and Jenny and I answer them a whole bunch of stuff on how to Bolus for fat and protein. I mean, there's a ton here anyway, it's all in that private Facebook group up under the feature tab. This is the part where I say thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Please subscribe and your apps Subscribe and follow follow and subscribe.

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#667 Type 1 and Vision Loss

Ryan has type 1 diabetes and lost his vision due to retinopathy.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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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 to episode 667 of the Juicebox Podcast.

On today's show I'm going to be speaking with Ryan, he's an adult who has type one diabetes. He also lost his sight later in life because of diabetes retinopathy. Today, Ryan is going to share his story with us. And Ryan would like you and everyone listening, including the manufacturers of diabetes devices to know that accessibility is incredibly important. While you're listening today, please remember that 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. We're becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please take a few minutes today to go to T one D exchange.org. Forward slash juicebox. And take the survey your answers which will not be hard trust me easy, easy survey. Those answers will help people living with type one diabetes T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Find out more at contour next one.com forward slash juicebox get the meter that my daughter uses. The podcast is also sponsored today by us med if you're tired of your diabetes supplier, and you'd like to get better service and better care, go to us med.com forward slash juice box or call 888-721-1514 Get your free benefits check right now and get started with us MIT

Unknown Speaker 2:12
AI guys, my name is Ryan Hui i am the program lead have come to work for the Canadian National Institute for the Blind. I am 35 years old and I've been diabetics and type one diabetic since I was seven years old. I'm currently a pump user and I actually lived with a condition called diabetes retinopathy, which has taken away a lot of my sight. But I'm not letting it slow me down. And you know what, we're going to talk about that today.

Scott Benner 2:37
Cool. And before we do anything serious, and that was a lot of important serious stuff right there. I'm just gonna get out of the way letting you know that every time you pop up on my calendar, I think of that Hong Kong phooey cartoon, from when? I'm sure most people

Unknown Speaker 2:51
I get that a lot. It did. I do get that a lot. It's funny.

Scott Benner 2:54
It messes with my, it just messes with me, because I know you're coming on and you've got like a really interesting story. And, you know, it's a fairly serious topic. And in my mind, like, this is the it just doesn't feel that serious right now. So

Unknown Speaker 3:06
I, you know, I have a good sense of humor about it, because let's face it, I'm visually impaired, but I would I just do funny things that I wouldn't do if I had sight and you got to have a sense of humor about it, or else, you know, I'd be one, I'd be a shut in. And just, you know, I got a lot to give, um, young ish will say, and I, you know what, I think I got a lot still left to learn and a lot to give, especially in the diabetes world.

Scott Benner 3:28
All right, right. So let me try to make sure I understand everything. You were born sighted. I was yes. Right. And if I use bad terminology, please let me know as I'm going because I really don't have the first idea of of what I'm doing here. So but sighted seemed like something I'd heard before that sounded right. And the the loss of vision? Was it genetic? Was it diabetes related? Was it a blend of the two?

Unknown Speaker 3:54
Great question. But I really hate this question for a number of reasons. And so like, I don't know, who's listening, but I'm very careful to say that it was diabetes related, because there's so many diabetics out there, that I don't want them to think it's inevitable, because it's not it just I think I do the short stick. So it was diabetes related, but I'm a little bit different. Usually, there's warning signs, there's treatments nowadays that you know, can can help out and stem the loss or even stop it completely. Right. Right. So that you can keep your usable vision or, you know, full vision, right? This happened to be about 10 years ago, I actually was bowling the night before, drove home completely fine. I wore reading glasses. But that was nothing out of the ordinary. And I woke up the next morning and people were texting me and I wasn't answering them and they finally called me and Ryan, why aren't Why aren't Why aren't you answering your phone? And I said I couldn't see the screen. So I'm like, You know what, maybe just dark in here. I opened the windows turned on the lights. It's you know, 10 in the morning, but still couldn't see and eventually this was a this was a Sunday. I went to the emergency room. And at that point, they looked at my eye and said, There's something serious going on here. And that was, like I said, Sunday by Thursday, I was up in Toronto at the big hospital, having some surgery done on my eyes to try and save my my sight. But unfortunately, at that point, both of my retinas had detached

Scott Benner 5:19
oh my gosh, so diagnosed, it's 718 years later in your mid 20s. And you just wake up one day, and things are gone. Let's ask about. So you're Canadian, which I can tell by your general pleasant demeanor and your accent. Plus, you work for a place in Canada, which would be a weird poll if you were like in Texas or something like that. But but your healthcare system and being diagnosed that long ago, they put you on regular an MPH and did you stay on it for ever? How did that go at your diagnosis? Do you recall

Unknown Speaker 5:54
really interesting. So over the course of the years, and I'm going to age myself here, but there's been several different times that I've changed all kinds of whether it's insulin, counting carbs, you know, the the big chart you get for fruits and vegetables, you get 12, proteins, whatever, that kind of thing. And then there was even like, the weird pyramid you had to use and like counting, I don't even know what this is. But like a kilojoule back in the day, but insulin wise, I learned very quickly and in what I tried to be a half a glass half full kind of guy, but it diabetes helped me grow up a lot faster. So I learned to mix my insulin and give myself injections. And of course back then there wasn't there was no pen. It was you know, syringe, okay, you got to test your blood sugar, don't touch the strips with your hands, because then they're not. They're not usable. And then it's like, Oh, you got to, you got to wait 60 seconds. And now it's like four seconds until you get the reading. Right. So I was on regular and mph. And what's interesting in Canada, we used to call the regular the human are we call the Toronto. I don't know why I have to ask my diabetes educator about that. But it was actually really cool because I learned to give myself injections on an orange. So like they'd say, Okay, I dropped the insulin, you get, you know, four units of our and 15 units of NPH. And it was a breakfast and dinner kind of thing. And that was years and years and years. And then finally human log came out. And I got switched over to that which I'm still on today. But NPH was a slower kind of, I guess, weaned off. And I did Lantis for a while. But now because I'm on a pump, it's straight human log.

Scott Benner 7:31
So is this prior to like in home real portable, blood glucose meters, your diagnosis, or did you have one?

Unknown Speaker 7:40
No, I had one but it was it was probably oof, I don't know the size of a television remote. Like it wasn't I mean, they say portable loosely, but it was more like this is it is huge. You can't carry it in your pocket. Right? So my mom was carrying it around in her purse because it was just too big. Right? And it's interesting because all the kids were so curious, because I was so young. Oh my God, what do you what are you doing over there? Like, why? Why do you get to do this? Can you do this to me? And you know, like, it was actually kind of helped because it was I was the cool kid like look at all this stuff. But we didn't realize it Ryan you can eat sugar. This is a very fickle disease. You don't know what's going on inside your body, that sort of thing. Right? So I was eating peanut butter. I always played organized sports, I was eating peanut butter sandwiches and drinking Gatorade is on on the hockey bench or the in the baseball dugout and other kids are got water and like why did he get that and nobody really understood?

Scott Benner 8:33
Yeah, I was gonna ask if before I go forward, I want to tell you that in my attempt to Google kilojoule, all I came up with was a DJ named DJ kilojoule. So that's not going anywhere. For me.

Unknown Speaker 8:46
It was it was very short lived, that's for sure. And then I had this big poster board that I had to hang on the fridge and it's like, Okay, Ryan for breakfast, you get, you know, two fats and four starches and six vegetables and one milk. So it's like, okay, if you had a bowl of cereal, you had to match up the picture, I get a quarter of a bowl of Cheerios with half a cup of milk and that's my my starch and my milk. It was really It worked. But now looking back at what we know now I'm like, what a disastrous way to treat something, right? It's it's just, you know, insulin twice a day where, you know, well, the insulin eventually wears off. Well, what am I doing in between that and I'm eating a whole lunch in a whole meal in between that so it's interesting how under how we've progressed Yeah,

Scott Benner 9:34
I actually not to take another diversion but I was pretty sure but I wanted to double check most of the research that went on around insulin initially Banting and Best and, and all that stuff that happened University of Toronto, so I'm guessing that was probably a pretty, pretty big source of pride in Canada.

Unknown Speaker 9:55
And 100 years. This year,

Scott Benner 9:59
yeah. What's coming up is really excited actually have the coins here, somebody was very kind, Canadian listener sent me the commemorative coins about insulin

Unknown Speaker 10:07
all Well, thanks for supporting because that's a, that's a great and I'm a volunteer for diabetes Canada and I just did their lace up event. So I ran 10 kilometers, and then I ran over 100 in the month of September, because we raised money, and it was kind of, we can't wait 100 more years for a cure, right? Like, we're treating a disease and for lack of a better term, we're not really getting anywhere, right? There's still complications, there's still this, there's unfortunately, still people, you know, passing away, and there's kids getting in, and I hate to see kids get diabetes. And you know, what, I'm hoping that we, you know, even $1 can get us a little bit of a foot forward.

Scott Benner 10:46
Well, excellent. Listen, I'll tell you that I think the the real problem at the moment is the disparity between care, right, like, there are people who are diagnosed today and 2021, that still receive regular an MPH and that, you know, kind of very old fashioned, you know, care plan. There are other people who have access to amazing technology, and you look at their agency and their variability and their time and range. And you might not even know they had diabetes. And the difference between those people can be, you know, financial, sometimes it can be just the luck of having a doctor who understands it well enough to explain it to you or to introduce you to the tools. It's, you're right, it's it's, you don't you don't think about it as much. But there's just such a chasm between understanding and not understanding. And there are a lot of problems in between how people come to that information or never find it.

Unknown Speaker 11:45
You're absolutely right. And you know what the big thing even within countries, it almost depends on where you live. Right? And it's, it's, it's sort of, even within Canada, there are certain provinces that I can live in and get exceptional care. And then there's other provinces where things are only partially covered or not covered at all. And it's like, well, you're almost in a sense, and I'm being facetious. You're telling me where I can and can't live, in a sense within Canada, right within my own country that I'm a citizen of it's like, if I live in Ontario, I get this. But if you live in Manitoba, you don't get this. So it's like, Why, I mean, facetious question here, but why would I ever move there? If I'm getting the coverage? I'm getting in Ontario? Kind of thing. Right? Yeah. So it's, it's, it's, it's very, it's a very interesting thing. And I know, diabetes, Canada, and I hate to mention them, again, has done a really great thing. And they brought the scene Ibn, and they're doing a care plan for called diabetes. 360. Right. So it's like, hey, let's get a national framework within Canada. So that if you live in Vancouver, or if you live in Halifax, you get the same care, and everywhere in between. So it's like, this is covered. There's no gray area, it's black and white kind of thing. And I think that's what we really need and what needs to be adopted not just within one country, but worldwide, right? Because even I'm actually you know, to go back to your previous question, I'm actually a dual citizen of Canada and the US. So it's interesting because my mom lives over in the US and, and she's a diabetic, she's type two, but some of her medication is that when she tells me what it costs, I can't believe what what she has to pay just to essentially stay alive and to be able to eat food every day. It's it's mind blowing.

Scott Benner 13:34
Listen, Canadians have enough trouble as we heard a minute ago from that loud bang, you just had to defend yourself from a beaver riding a moose. So why should you also have to fight about what insulin costs? It's not fair. Honestly, you live in a Tundra? It's a wasteland. Am I right? Just frozen? Like, you probably live in a city. So just, I don't.

Unknown Speaker 13:53
I'm actually I know, I'm actually in the Big Smoke, as we call it here. I'm in Toronto today. So that's, you know what? It's not my usual dwelling. But you know what, it's the biggest city in Canada. So there's, it's quite a change. And if you hear the clicking, that's actually my guide dog who has a mind of his own cniv trained Joe walking around and clap and everywhere kind of thing. Cool.

Scott Benner 14:15
So there's looser, more gentrified. That's excellent.

Unknown Speaker 14:18
Yes, we've trained them to live at home. Lovely.

Scott Benner 14:21
I really wish you would have just said that you had a seeing I don't know anything else that was like, you know, indigenous to Canada, but I will accept that it's a dog. So is it fair to say that by today's standards, and let's think about for you what you're using an insulin pump, you have a glucose monitor.

Unknown Speaker 14:40
I do I use the libre. So it's a the continuous blood glucose monitor but it only tests when I scan my arm. So it's like Flash looks like a couple of quarters. Yeah, a couple of quarters on the back of my arm and I scan my phone over it and then my phone reads it out loud to me because the meter that is produced with it will display the the The sugar level but it won't. It doesn't audio, the audio like telling me what sound kind of thing? Right?

Scott Benner 15:06
Yeah, that's amazing. But But my point is that your care now is more in line with what I would consider top of the line care now. And can we? Is it fair to look back and say that if you had the care you have now back then would your vision be different? Or have they given you any indication of why it happened to you so quickly? Because it's my guessing. And I obviously don't know. But that people listening are thinking that, that there must have been those years must have been really hard on you. And, and But where's that not the case? Can you explain that part to us?

Unknown Speaker 15:40
I'm really lucky, because of the people that support me around, I wouldn't be where I'm at with without them. Whether it's a diabetes nurse, whether it's my endocrinologist, my family, even my friends, they really support me and help me out when when they can, right. So that's first and foremost, like I'd like I said, I wouldn't be where I am today. But it's interesting, when you use the word top of the line, I do believe I receive really good care. But there's still some things that are lacking. Like I I know, going back to like I played scholarship baseball in the States, right? So it's not that I was unhealthy, like yeah, maybe I drink a couple of extra Gatorade here and there, you know, got some sugar in me. But for the most part, my diabetes care was pretty good. My sugars in a once these were all in check. And it's just like I said, I don't know, something caught up to me. And I finally did my vision just went right. There's no rhyme or reason. But I'm kind of I don't want to look back on it. Not that I'm gonna answer questions. But it's like, let's, let's see how we can move forward, right? Like I tell people, and this is very just out there. But I'm blind, I'm not dead. Like I still can walk around my legs, my arms, my mind still works. And I really like what we're doing here. But the thing that I talked about, when you say top of the line care, my insulin pump is 10s of 1000s of dollars, right to purchase it. But I only use 11% of the functions, because I can't see the screen. So like, I can't count carbs with it. I like put this into perspective, I can't even tell you what my battery level is on my insulin pump. Because I can't see the screen. So there are some services that are lacking, right. And that's kind of what brought us together, right? Where you know, what the cniv and with diabetes Canada and all the pump manufacturers, you know, your Medtronic, your if so pump, tandem, all of those, we're looking into how can we create something, whether it's an app, or whether it's a fully accessible pump, just just to get it out on the market? Because, you know, just not even with me just with diabetes, retinopathy in general, like there's vision issues or potential vision issues for every single diabetic out there.

Scott Benner 17:51
I think that even beyond more catastrophic problems, just just age in general, for people, I think your fight could end up in, you know, inadvertently maybe but but very directly being the flight of every person who eventually needs glasses, just to see something in front of them. I think all the time. I mean, my daughter is only 17. But I think all the time about like, what's going to happen to her? Like, what if she gets lucky, right? And she just lives into her 70s She's still gonna have type one diabetes. And I watched my mom tried to, you know, mute her television. And I think what if my mom had to check her blood sugar or change a CGM, or put on a new insulin pump? I don't know that she could do that. And I think that your your issue is, puts a real spotlight on it because of your age, because we're talking about it in a time prior to when we expect to talk about it. Like if I said to somebody, oh, like my 75 year old mother can't blah, blah, blah, they think, Oh, that makes sense. But when it's you, you go guys, a 35 year old guy that can't? What are we going to do for him? But I think it's what are we going to do for everybody? Like everybody, at some point, they're like, I had perfect vision my entire life. I mean, really, like, just I never imagined that my vision would be an issue for me. And a few years ago, I just suddenly couldn't see the things in front of me without glasses on. And that's not going to I mean, it might get better. It might it's not gonna get better. I'm sorry. It might get, you know, more severe. I don't know. But what if I had to do those things? And that was part of my struggle. Or their answers like what do you find it's helpful to you.

Unknown Speaker 19:29
Again, just a lot of you're asking for a lot of help. And a lot of memorization at this point. And it's interesting, you bring up you know, my age, right? Because I'm in that weird middle age where I remember before the internet when your telephone hung on the wall and had a cord. And now I also remember where hey, I got this computer that fits in my pocket and does pretty much whatever you ask it to write. And they I think back and what if you handed a 12 year old diabetic, the meter I had to use 20 years ago. Like they'd laugh at it right output. And then on contrast, what if you handed someone like your mother if they have to test a blood sugar? What if I hand them my, my blood glucose monitor? And they're like, What is this? There's no screen? What do I do with it? You know, it's interesting how we have to sort of cater to and take into account, everybody, like you said, and I think that's the the thing that everybody is missing. It's not, hey, let's make a specific thing for one group of people, let's make it accessible for everybody. I mean, because even somebody that has their vision, might prefer not to take their pump out of their pocket, right? Like, let's do let's use the sounds, I can use the sounds and it makes it easier, right? And you might not be visually impaired, but like things, audio, things make things easier. Or let's reverse the contrast. If it's, you know, light background and dark print. Let's make it a dark background and light print. Let's make there's some options out there, right? Because, again, I don't work for Apple, I don't, I don't. But I can take an iPhone or any of their products out of the box and start it up and immediately with no help set it all up and use it. Like why can't we do that with other things, right? Where it's like, I have to FaceTime somebody, or I have to have my diabetes educator or somebody was site, even to just change a battery on my pump or, you know, daylight savings is coming up. So it's for someone to change, I can't change the time. And yeah, it might not make a difference. If, you know, one hour but like, let's say I traveled to Europe or Hawaii, where there's like a six hour time difference? Well, that's going to make a big difference on when my insulin is getting dispersed and how much is supposed to write if I'm sleeping, not sleeping, but I can't change that on my own. So there's a lot of different things that I guess people just take for granted. And I understand that but you know, it's people like the cniv and everybody that's helping out with this project, you know, we need to get that universal design into the pump and thinking about how can this help everybody not just you know, visually impaired perspective.

Scott Benner 21:57
Let me ask you to put context to your so I'm going to try to understand what it is you're seeing or not seeing in your view through your eyes. So when you're when you have this issue at first and you just wake up one day and this is happening, your retinas have detached is that was that what ended up happening is that from what does that I guess

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so much bass. Alright, let's get back to Ronnie.

Unknown Speaker 26:24
I described this to people a lot. So this is sort of you have millions and billions of blood vessels in your eyes. And they're when they're fresh, they're like green leaves on a tree. But as you know, usually with diabetes, the you know your blood sugar's are up down, it's a roller coaster ride. So those blood vessels begin to almost in a sense will say die. So picture the leaves in autumn on the tree, they're starting to turn red and orange, and then they get kind of crusty and then fall off the tree, right. So my blood vessels did that overnight. And they pretty much all died and then fell on my retina and detached it. So it was like pretty much a big weight falling on my retina while I was sleeping and it detached it. And to put it into perspective, your retina is the consistency of an elastic band, but like you're taking it between both of your hands and stretching it as as far as you can. That's sort of the consistency of your retina. So right now I have oil around my retinas. And it's holding them together. So it's kind of like liquid handsoap. But it stays in my eyes and keeps the retina attached. But I'm not gaining any vision back from that. What and

Scott Benner 27:33
I'm sorry, what is your level of vision? Like? How do you describe it to people,

Unknown Speaker 27:37
I have what's called light perception. So in my right eye, I can't see anything my right eye might as well be closed. In my left eye, I can tell you the TV's on. But I can't tell you what's on it. I can say there's a light on on the ceiling. Or oh, there's a screen door over there, I can see a door or window depending on the light that's coming in. But that's about it for what's called light perception, right? Like if your fingers are maybe two inches in front of my eyes and you're wiggling two or three fingers, I might be able to tell you on a good day. What what what you're doing. I find that in the morning, this is interesting. I can tell if my blood sugars are normal or a little bit on the higher side based on looking out the screen door and what I can see, because my blood sugar actually still affects what vision I have or don't have

Scott Benner 28:21
better blood sugars you see better? Higher blood sugars you see? Less less well.

Unknown Speaker 28:28
Yeah, loosely defined. Right? We'll say yeah, but yeah, of course, that's that's sort of what what I can see. And you know what, in the summer, if we're standing outside next to each other, I might be able to see you but you'd be like a blob, you wouldn't look like a person, you'd just be like a cloudy blob. And I might be able to say, Oh, you're wearing a blue shirt, but you might say oh, it's black, but I can see dark, dark clothing, right? Okay, kind of thing works better, especially with the contrast of the light concrete. So but I mean, I don't like to depend on that. That's why I got the guide dog. And that's why I got all kinds of training to kind of get me around kind of thing. So I'd love

Scott Benner 29:03
to understand your day then, specifically around eating and, and giving yourself insulin, those sorts of things. So you wake up in the morning, can you walk me through it? What do you do?

Unknown Speaker 29:15
Yeah, of course. So right away, I test my blood sugar. I take my smartphone and I open the app and then I scan it over the the tester on my arm and it tells me my blood sugar then I you know for breakfast, I tend to stick to a lot of the same sorts of foods. And it's a little bit more expensive. But I buy prepackaged food for instance, oatmeal, I don't buy the gigantic 10 pound bag, I buy the box of 12 packages, because it's measured for me so it's easier to count the carbs. Technology plays a huge role in what I do. So I have apps like seeing AI. There's a couple of other apps out there that will actually read I hold my phone camera up to the box and it'll say this is Quaker Oats original oatmeal, and then I can hold it up to the back Can I say, Oh, here's 1010 grams of carb per pouch, it's this much sugar, this much sodium, that sort of thing, right? So I actually use technology quite a bit. But I, I tend to stick to the foods that I know that are prepackaged that are you know, like, I'll eat a fruit cup of peaches rather than a peach. And I know that sounds crazy, but at least it's measured for me, because the peach could be so big. And you know, I could say, hey, that's 10 carbs, really, it's 22. But I know in the cup of peaches, it's, you know, nine carbs. And that's that's what it is because they've measured it kind of thing.

Scott Benner 30:35
That doesn't sound Hey, that app, I'm looking at it right now it does a lot of crazy stuff, like not just reading things, you can teach it your friends faces, and it'll tell you like facial gestures that people are making, and

Unknown Speaker 30:46
it'll read money. So like if I go to China or to Europe, and I don't know, if they have Braille on their money or not, or even the US it will, it'll tell me that's a $10. Bill us or that's a $5 bill, Canadian kind of thing. So it's actually really cool. The app, is it perfect? Probably not. But you know what, it's the best we got. And it's really changed a lot of visually impaired users lives for sure.

Scott Benner 31:09
That's what you're talking about. It's it's somebody to step up and do something that really, because that's an impactful thing for you that app I imagine.

Unknown Speaker 31:16
I tend to you I'd say I use it 50 times a day. Yeah. Because even like reading my mail, I can it reads out my mail. To me. It's, it's funny, you can even if if something pops up on my computer screen that you know, my accessible technology doesn't read because it happens from time to time, I can hold it up to the computer screen. And sometimes it'll read that for me. And it does, from time to time catch things on my pump, but I don't know why it doesn't like the writing on my pump for some reason. So it'll it'll say it says something, but it won't tell me what it is. It's like I recognize the text. But I don't know what it says kind of thing. Right?

Scott Benner 31:50
So okay, so you stay on a pretty regimented diet, stuff that you know how to manage? What are your goals for blood sugars? Like, what are you trying to accomplish? At a meal? Are you are you trying to stop a spike? Are you just trying to keep it under a certain number without going low? Like I'm trying to imagine that getting low is probably not a great thing for you. So like, what's your? I mean, I guess like, what would you consider your style? Like, what's it you're going for?

Unknown Speaker 32:16
I try to keep it more of a straight line than a roller coaster ride. So when I'm eating, I tried to keep it. And this is Canadian, right? Because I know you have listeners across the world. So we use the the millimoles system. So like, in range sugar is anywhere from let's say 4.5 to, we'll say 8.5 is where you want to be, you know, it's getting a little bit higher, but you know, you're not going to it's not going to be that's not a bad sugar, right? I want to keep it under like let's say 11 When I'm eating even if I go for chicken wings with threatens right kind of thing. But you know what, that's not always the case. I would much rather and this I please I'm not a medical professional, but I would much rather go highs and low 100% There's no no question about it just because of the treatment. I get very sweaty when I'm low. I feel it pretty hard. I run a lot on the treadmill and stuff. And so I always make sure I have stuff with me. And it's usually liquid. And that's why I love the Juicebox Podcast because my fridge is full of juice boxes all the time.

Scott Benner 33:21
You know, my daughter doesn't want them cold. She hates them cold. She'll drink a juice box if she's low, but she wants it to be room temperature.

Unknown Speaker 33:29
You know what I think I can I can I'm good either way, but I think it's that insatiable hunger, like nothing's ever going to satisfy the low so she wants to get it in as quickly as possible. But drinking a cold juice box can hurt your teeth. I think that might be why her whole life.

Scott Benner 33:45
She just never wanted them cold. Well, okay, so you're describing a world like for people living in America? Like, are you shooting for 80 to 150 ish, but you're trying not to go over 200 at a meal. And, and you're thinking that because not only do you I'm guessing here and I want I want to hear more from you about this. Not only do you not feel well when you're low. But does does your site impact that moment? Like I'm trying to imagine how much of what I do in a panic situation is very annoying. I don't have to think about it because because of the information that's coming in through my eyes, like like, you know, my daughter needed a juice box the other night and we just didn't have them upstairs anymore. In the middle of the night. I had to walk downstairs to get it loose or something that I'm taking you for granted that I could just traverse the house in the dark, grab it walk back upstairs. So just everything you do take more time and is that time part of your consideration why you don't want to be fighting with a lower what are the other implications?

Unknown Speaker 34:45
Yes and no. So like obviously things will just take me a little bit more time in general in life to do but you know what I tend to sort of as a blessing like my I don't want to say my memories gotten better, but I think I learned to depend on it more just like I learned to depend And on my hearing and my touch a little more. If you think about like, your home, I bet you, you could walk around your house if you I don't recommend trying this. But if you close your eyes, I bet you'd still know where the coffee tables are where the doors are in general, right? So that's kind of what I do, I do what's called the zombie walk, I have my arms out in front of me, if I'm not having Joe, my guide dog lead me, and I'm touching everything. I'm sure my walls are pretty dirty. But you know what, it's, it's a price you pay for not having banged up shins and stuff, I lose all of my vision when I get low or when I get too high. And that's sort of, I don't want to say the first indicator, because at that point, it's, it's too late. But that's sort of how you kind of know, right? And, you know, many diabetics, I get agitated when I'm when I'm higher or even lower, right. And it's just the you want to treat it as quickly as possible. But I have to stay out of the kitchen. Because if I'm in the kitchen, I'll go crazy. When I'm low. I mean, all of that box of Oreos, like I tend not to keep that stuff in the house. But if it's there and readily accessible, it's gone. You're because you just have that insatiable hunger. And after that you look down, you're like, oh, now I'm 15. And it's like, Oh, what did I do? Now? I gotta correct that, you know, you go from extremely low to extremely high. And that's where you get into your, your body trying to to adjust and things right. And that's where you might get into some trouble with complications, right? Do you live and again, not a medical professional. But

Scott Benner 36:29
listen, right at the beginning of this episode, I'm going to say a very long sentence that makes everybody 100% certain that you and I are basically morons, and you shouldn't listen to us. So that way, there's nothing here except for the stuff you really know about nothing's medical advice. We're just chatting, having a conversation. But trying to understand how things impact you, which I think is the is definitely the goal of this conversation. You live alone, we're not always or how does that work?

Unknown Speaker 36:55
No, I do. I do have a two year old daughter. But she's not old enough to help me out yet though. So it just adds I guess, I don't want to say more a little bit of a ripple. But it adds a little bit of a ripple because I don't want to be going low when she's there. Kind of thing. So you just you know what, it's, it's great. But I do live alone for the most part. And I you know, I like I said, I got Joe but he can't help me. He just helps me get around kind of thing. So it's it's mostly myself. And like I said, I have a really great diabetes educator, Team endocrinologist and a lot of my friends will help me all I'll FaceTime them and be like, hey, my technology isn't reading this. What can you see what this is what this says? That sort of thing. And they're more than willing to help out which is great, because I know not everyone has that opportunity. That's amazing.

Scott Benner 37:42
It really is. And your daughter's with you. Not not full time. Correct? Yeah. Yeah. What's it like having a baby? When your visions the way yours is?

Unknown Speaker 37:54
You know, what the loves there and the parenting it, nobody's perfect. But you know, and I think she's starting to realize that dad's a little bit different because you plank point to things and she'll be trying to tell me what she wants. And sometimes I'll get it, but we sort of get there in a roundabout way. So I think she's starting to learn, but she's very helpful. She wants to put her own clothes in the laundry basket, she wants to, you know, bath herself. And I'm like, You're not old enough for that. But you know, that'll be there watching and I'm terrified when I feed her. So I'm a little bit on the slower end doing that. And her mom's able to give her a little bit more freedom when she's over at her mom's place. Because she can obviously see right where I'm all over her. I'm right up in her face. And I can tell she gets annoyed but hopefully when she's a little bit older, she'll understand why it was I was doing I wasn't doing that to annoy her. I was more doing it to Yeah, it'll make sure you don't choke on the blueberries kind of thing. Yeah,

Scott Benner 38:49
it'll be completely No, I'm imagining you're like taking like a spoonful of something and stick it in her eye or something like that. But I don't know. I have how much do we i This is the different row but how you mentioned at the beginning for a second but how much latitude do you have for for just being light hearted around your sight issue? Like is it like if I if I like you and I don't know each other, but if I would have just in the middle of that conversation now just blurted out like you don't want to put cereal in her eye? Like would you find that amusing? Would you find that irritating stuff like that rub you

Unknown Speaker 39:28
know, I just you know what, I got pretty sick skin. It's really good. Like I said, I just I do funny things right? And there's some things that you know, like I've locked myself in elevators looking for the braille to get to floor three. Just the other night I thought I was on the 15th floor but I was on the 19th floor. So I was essentially trying to break into someone's apartment that wasn't that I wasn't supposed to you know what I mean? Like, yeah, and people are pretty good. They'll come up and see the dog or the cane. They'll be like, Oh, can I help you? You know, and that's sort of you look to the kind So people and you got to trust a little bit more when you're visually impaired because it's just the way things are right? I mean, yeah, there's so many funny things. I have tons of stories. It's just really, really funny. I've even, you know what, I can't eat and not get food all over me. And I'm like, it could be like, just chips, but I'll have like, Chip dust in my hair. And it's like, how did you? How did you get chipped us to do that? You know, it's, it's just, it's really funny, where there's times where I'm walking around, and there's food in my teeth, or there's something on my face, or even at times my shirt on inside out. And nobody has told me it's like, I've been walking around for four hours at work, and nobody thought to say, Hey, Ryan, your shirts on and you know what I mean? Like, it's, that's

Scott Benner 40:41
why yes, that if I may like, that's why I asked because, is that, like, I'm sure I imagined. Like, I want to imagine you in the elevator. you've pushed the wrong button. You've locked yourself in the elevator at this point. I want to imagine you just in a personal private moment, laughing out loud and being like, son of a bitch. I'm stuck in a goddamn elevator. And like seeing that is amusing. But I don't know, I think people would want to see you as that being a sad thing. But I'm what I'm trying to get as you don't see yourself that way. And you don't want other people to either. Is that right?

Unknown Speaker 41:14
No, I don't get me wrong. I have my sad days where like, let's, let's say for instance, and I'm not throwing a pity party here. But I've never seen my daughter. Yeah, show me to I don't know what she looks like. I mean, people can describe her to me, but I mean, I've never seen her. Right. So like, that makes me sad. There's there but I know with the way technology is going, I will see again in life, whether it's walking her down the aisle or whatever, you know, the technology is going to be there, maybe there's a surgery, stem cells, something, there'll be something out there that will be able to help me out. But no, I tend to just laugh it off. And there's things there's times where I get frustrated, certainly where it's like, oh, I used to be able to hop in my car and drive to the store. But now it's like, I gotta hop on three buses, and it takes me you know, 25 minutes to go, you know, three kilometers down the street, right? Sorry, three miles down the street. But it's, it's interesting, because you just, it's all about how you look at yourself. And I just think I got a lot left to give instead of, you know, being angry, and people always express and, and take their vision loss or vision, just differently, right. And I tend to tell people, because I do work in the come to work department with the cniv. So we prepare people for employment as visually impaired people. I think the first step is not being ashamed of your vision loss. And I'm not, it's you know, what, it's a part of me, like I said, my brain still works, my feet, my legs still work my arms, it's just you do things just in a different way, right? Like three people might be going to the mall, the end goal is to get to the mall, I might walk, someone might drive and other person takes the bus. But we all get there, it's just we got there in a different way. And that's how I sort of look at where we're getting, you know, even if it's working, you can still do what you got to do. It's just you might have to do it differently if you're deaf, or if you're visually impaired, or if you use a wheelchair, or if you have none of those needs, you know, you just tend to do things a little bit differently.

Scott Benner 43:04
I appreciate your sharing that i do i i can see how that attitude could just apply to so many different things in life. And, and i i Of course, I didn't mean to say that you're just running around not impacted by your life. Everyone's impacted by their life. I just, I don't want people to feel scared when they're listening. Like it's not okay to, to laugh along with you. Or it's good. I mean, like you don't I'm saying right, you shouldn't be treating people differently, because their lives are different than yours or your expert. Well.

Unknown Speaker 43:33
And you know what, more often than not, a person with any sort of disability just wants to be talked to, like, even just if I'm standing in line and you say hello to me, it's like, I'm not that, that that'd be great. I'm not looking for, you know, a whole conversation or anything, but thank you, it's great to just know that Oh, Hi, how's it going? Good morning, you know, something like that, like, what were people to? And we're just looking, you know, as you would say hi to someone else, you just might have to say it a little differently. It's like, Oh, hello. And you know, don't don't be afraid to say hello, guy with the guide dog. Like, yeah, that's my identifier. You know, like, I wouldn't know you could be talking to one of the other 50 people in the Starbucks rather than me. I would just wouldn't know right kind of thing. But it's that sort of, and I get it from both ends of the table. You can be you're just as scared to approach me as I'm probably scared to approach you right kind of thing. So 100%

Scott Benner 44:21
Yeah. Let me ask you a question. Give me an example of something that you wanted to do in your life that you can't do because of your vision and give me an example of something that you're doing that you find really valuable and wonderful that you never would have done without this happening too.

Unknown Speaker 44:37
Interesting. So this kind of answers both of them. So for ever, ever since I was a little kid, my grandfather was, you know, a firefighter. I wanted to be a five firefighter. But think about it, your house is on fire, and heaven forbid, but your family's inside and Ryan rolls up in the fire truck and I get out with my guide dog and I'm like, Hey, we're here to save your family and you know, stop the fire like probably not realistic, right? Like, how would you feel you'd be like, what? What's going on? Right? But I'm helping people, I'm helping those with a visual impairment, with advocacy issues with come to work issues with employment issues. So I'm still helping people. It's just in a different way. Yeah. And truth be told, I don't know that I'd ever be working for the cniv. If I didn't lose my vision, I don't think I'd ever be fighting for an accessible pump fighting for these things. But you know, what life throws you curveballs. And like I said, I played baseball, and you just life is full of adjustments. Just as an athlete, they're, you know, your careers full of adjustments. So you just got to make them and kind of roll with the punches. And I know, that's very cliche, but it's very, very true.

Scott Benner 45:41
It's a cliche, because if you don't do that, then you get very inflexible and things start going wrong pretty quickly. You keep saying it quickly, because you're so accustomed to it, but you work at the sea and IB Foundation, what's that stands for?

Unknown Speaker 45:56
The Canadian National Institute for the Blind. Nice.

Scott Benner 45:59
And how long have you been with them?

Unknown Speaker 46:01
Just over four years, and I've been in a couple of different roles there. And it's, it's really great. We're a national organization, and we do, we're changing what it means to be blind, one live at a time. And that's what I really, really like. We're, you know, what, we've a lot of people have suffered through COVID. But we've actually sort of flourished in a way because we've actually been able to become the Canadian National Institute for the Blind. So now we're, we're getting people together through zoom, and through the wonders of technology that, you know, live in Vancouver, and Halifax, they're meeting each other. Whereas before, if you lived in Halifax, you pretty much only met the blind people that lived in Halifax kind of thing. So it's really great to see everybody sort of get out and learn from people, right? And we're just looking to empower people to do whatever they want to do. Like, yeah, you might have to change a little bit of it. But you know, as long as you're realistic, you can can dare I say, do anything, as long as you're realistic, right? Kind of thing.

Scott Benner 46:59
Right? See? And ib.ca, correct. Yes, that's online. Excellent. I just have people that shows listen to pretty heavily in Canada. So I just want to make sure people know how to get to it, even at other places, so you can see what they're doing. How does it work in Canada, like here? You'd be like a nonprofit? Is that the same thing? There?

Unknown Speaker 47:18
We are. Yes. Yeah. We're just a really big one. That's been around for over 100 years.

Scott Benner 47:25
Okay. Well, do you find that? I guess let me start with this as the question, what's the incidence of blindness in the population? Do you know that?

Unknown Speaker 47:39
I don't want to give you bad numbers. I, I can't speak to that.

Scott Benner 47:44
Can I say, I don't know.

Unknown Speaker 47:47
How to moderate I don't even I don't even know how to answer that. Unfortunately. Just because there's so many different eye conditions. And blindness is a spectrum. Right? So it's not like, oh, Ryan can't see. And that's, that's blindness, right? There's a lot of people between your vision and my vision that might consider themselves visually impaired, maybe not blind, but visually impaired. So it's, it's kind of, I don't want to say misrepresented, but I, there's a lot of in between that, you know, maybe accounted for maybe not, it's, you know, we do we do service a lot of people, we help them out, and we provide support for tons of people all around the country.

Scott Benner 48:26
So yeah, I've had people on who have all levels of site. And, you know, I've had those. There's a gentleman on at one point who drives but you know, like, it's technically is at, like you said at some version of their site is restricted to some degree. And I don't know whether or not that continues to, or if they find that, but these new treatments now are really good at like, holding people site where they are, is that right?

Unknown Speaker 48:53
Yeah, even some of the stuff that they, my my doctors and ophthalmologists were telling me like, oh, we wish this was kind of around back then. Because we would have liked to see how it worked on you. There's there's a lot of different treatments out there. And they're only getting better. Which is which is really great.

Scott Benner 49:09
Wow, is there any? Are there any sight issues in your family line? Like is this is the first time this has happened? Or is this happened to somebody in the past?

Unknown Speaker 49:20
No, I like to be the trailblazer. It's just me. So I mean, my my father, and you know, everybody kind of wears glasses as they you know, get a little bit older in life, a little more seasoned. But for the most part, everybody is will say I don't like this word, but air quotes normal vision. So it's just kind of me so it was I'm the guinea pig.

Scott Benner 49:41
Wow, how how much of the day are you ever away from your dog? Are you never away from your guide dog?

Unknown Speaker 49:51
So interesting question, but so a guide dog. He picture a police officer, right so you're when you're in uniform. You're a police officer, but when you're at home and you're not in uniform, you're just a regular man or woman, right. And that's how it is with a guide dog. So he's here right now, but he's really a just a well trained pet. Because he's not invest. So he knows the difference. And that's a kudos to all the guide dog trainers out there, right that they're able to teach this brilliant animals that right? So he's usually nearby. But when I leave my house, I pretty much just only he He leads me everywhere. So he'll be invest, that's the thing.

Scott Benner 50:29
But inside the house, you just, he's a pet to you and you don't like is there a task in the house? Were you ever like thinking like, I gotta get the vest on him and get them helping me? Or does that not usually happen like that?

Unknown Speaker 50:40
Actually, so we had a scare a few months ago, the fire alarm went on, and I actually had my daughter. So it's like, Okay, I gotta get my daughter strapped to my chest, I gotta and then I gotta get him prepared, because he needs to leave me. Like if I put his leash on him, and he doesn't have his best. He's like, Oh, good, we're going for a walk, I can sniff things I can, I can do things. But like, No, this is an emergency. Right? So it's kind of lesson learned, right? Keep things by the door, you need to be prepared. But you know, for the most part, it's, I always leave within with extra time, that sort of thing. Because I know that typically I do things a little bit slower, right, we have to stop at every corner, because he's trained to, because he can't, he doesn't know if the lights green or red. Or if it's are turned across, I have to make that decision. So it's a, it's very interesting, and you go through a lot of training, and the animals have gone through a ton of training as well. So if you work as a team, you learn to I've had him for just about just about a year now. And we're sort of hitting our stride. So we're kind of in each other's head, and he kind of knows what I want him to do. And he knows I know what he wants me to do, because he sends me little signals as well.

Scott Benner 51:45
Do you ever finish something and just think to yourself, God, that was just a hell of a accomplishment? I mean, just Are you ever proud of yourself? Like, a fire alarm goes off? You've got a two year old with you. And you've got to strap up your guide dog and get out of a building like did you get outside and think to yourself? I'm amazing. Like, because like, or does that not strike you that way?

Unknown Speaker 52:06
I was very proud of myself in that moment. But I didn't put shoes on her. So she was strapped and I'm like, Oh my goodness. Now like you're hurting my back. She's She's She's big. She's getting bigger, right? So it's like, oh, I can't even put you on the ground now because we're outside. Luckily, it was, you know, July, it's not the middle of February where she would have been freezing. But again, lesson learned. Like what if that happens now? It's getting colder out? No, I actually. It took me all day. But I built a bedframe. And obviously, I can't read the instructions. It was like, Okay, I gotta feel this piece. I think this piece is this. And you know what, there was some trial and error where I had to take parts of it apart and be like, Well, I did that backwards or whatever. But you know what, I set the extra time aside and I did it. Even with my pump back to the diabetes. Sometimes when I have to rewrite and change my reservoir set it sometimes it takes me four minutes because I have days other time it takes me half an hour to change it because I screw up and I gotta wait for the pump to reset itself. But you know what I am proud of myself every day I do that too.

Scott Benner 53:09
I'm telling you, if if I was you, I would have put that bedframe together, it would have stood up and pounded on my chest and then like I've got damn Superman, I'm just gonna tell you all right now without being able to see this bed, I put it together. i And then by the way later at night, when I went to sit on it, I would for a minute think I better be careful. A blind guy put this bed together. Like I would have that.

Unknown Speaker 53:27
That that was my thoughts. So I was laying in it that night. I'm like, am I gonna be crumpled up in the morning and in just a disaster of a pile of metal and wood here, just

Scott Benner 53:39
stomp on the floor? And you're like, Yeah, that was predictable. But no, I mean, it's obviously it's not. It's just like to me, like, I'm amazed by what you're telling me. And not amazed, like, you know, like, I don't know what the word is. I'm not pitting I

Unknown Speaker 53:56
promise, I promise. I'm just the guy. I put my pants on one leg at a time in the morning just like everybody else. It's just you know what, I just might not know if they match my shirt. So it's really, you know, you just learn to do things differently in life. And that's how I'm navigating through my diabetes journey to you just really learned to do things differently. And you know what, it's, it's more what blindness has taught me. It's more about the journey, not the end product, right? It was always like we're so concentrated on the end and how quickly we get there. I sort of take my time and smell the roses and hey, let's let's let's do it. But it's about the journey. How am I going to do it now?

Scott Benner 54:37
Do you ever consider sending your daughter to like trial net, for example, to see if she has genetic markers for type one? Something

Unknown Speaker 54:45
it scares it scares the life out of me all the time. I haven't thought about it, but I'm just hoping that there's some sort of like cure or something. Knock on wood. I hope she never ever gets it. But if she does, I'm hoping that There's something out there that will help. Yeah, that's that's one thing I don't want for her.

Scott Benner 55:05
No, no, I wouldn't imagine it's just there's ways to see if they if people have genetic markers, and those markers can tell you you're, you know, within reason, your percentage of chance. And I just didn't know if that would be something you'd want to know about so that you could pre plan for it. Or if you would prefer not to know about and just kind of live on the side of hope. But if you haven't thought about it, you're not gonna have an answer to that question. So yeah, good.

Unknown Speaker 55:27
That's a really good question. I'm probably going to be thinking about it all day now. But no, I, it's something to consider. Definitely, no,

Scott Benner 55:35
it's just very, I mean, everybody feels the same. I've never asked that question of anybody who hasn't had a very similar answer. You know, just like, I don't know what that sounds scary. And, and the other side of it, I can see the adult part of it where you'd want to know and be prepared. And, like, I can see everyone's argument for either side of that. And I just didn't know if it was something you'd ever considered are not. Parents alive? Yes, they are. How often are you with them? And I'm wondering how that even if you're not like, together together, I guess my question is, is that if has your has your blindness created a scenario where they feel overly responsible for you still in a way that you might not have a 35 year old? That's really my question.

Unknown Speaker 56:26
Yes, and no, I don't see my mom often because she lives across the border. She lives in Michigan. So it's been closed for 19 months, she hasn't been able to kind of come across right. And I do feel bad for her because she's missing out on little Abby's life, she hasn't really seen you know, her and she hasn't got to see her grow up except for FaceTime, right? My dad lives in Windsor with me. He comes to over I'd say, let's say once a week or something, but it's interesting. At times he'll see 21 year old sighted scholarship athlete Ryan and then other times you'll see poor helpless blind guy, right. And I say that loosely, but it's, you know, it's so it's interesting, that he will want to do things for me. And, you know, Hey, Dad, if you're listening, I'm sorry, you're not getting any younger. You gotta let me lift those heavy things. But he always wants to help, right. But you know what I tried to I have to tell him like my legs and arms work. I mean, if I'm carrying groceries, and I run into the wall, that's on me, that's not on you. It's but you know, what a lesson learned. So he does. He does it comes it comes and goes, because other times he's like, Oh, you can do that by yourself. And I'm like, thank goodness, thank you. Yes, I can. But other times, it's oh, let me do that for you. Hey, let me let me oh, I'll get this all open this pop for you. It's like you open a pop can or whatever kind of thing. Right? So it's in love, and I love them so much for all the help and you know, I don't think I want to stop helping me dad. But it's, it's just interesting, right? Because it's, I get it. I'm this kid and he wants to help out. And he's still he does quite a bit. But it's, you know, I'm good. I promise I'm good. I just might take longer or do things differently.

Scott Benner 58:05
Not that this has anything to do with your situation. But my wife was telling me about the story the other day where a 90 year old woman who was still living on her own, voluntarily moved into a nursing facility to help take care of her 70 year old child. And I was just like, Yeah, see, that's the thing about being a parent right there. You don't I mean, like, look, it just never leaves you. It's it that I found that fascinating.

Unknown Speaker 58:31
But I feel and I worry, I worry, I'm like, oh my goodness, am I gonna get like this was Abby is this is this is what I have to look forward to. And she's gonna, you know, not say hate me, but you know, hate me for wanting to help or doing so it's it's it's very interesting.

Scott Benner 58:45
Yeah, they don't hate you. They just they'll act annoyed by it. But then, you know, if it goes away, right away, they're like, oh, where? Where were you on this? You know?

Unknown Speaker 58:54
Exactly. Yeah, I think you're right. Yeah,

Scott Benner 58:56
I have kids 17 and 21. So, I've seen it. Like I've seen it both ways. I've seen them kind of push away help. And I've seen them say no, no, I really need this. You know, it always happens in weird places. And yeah, it's gonna happen to you so happens to everybody. You know, just I just I don't know, I was like, stunned. I was like, I'm 90 and I'm living on my own. And I'm like, no, no, I'll go into a home to help my to help my child. That's like, that's really crazy. All right. Well, Brian, listen, I want to ask you, is there anything that we haven't talked about that you wanted to that I didn't get to?

Unknown Speaker 59:34
know I've had a great time. This has been a great chat and no, thank you just. Yeah, no, honestly, the

Scott Benner 59:43
wonderful I'm not pushing you away. I just want to make sure that we didn't like, like, you know, because sometimes I get, I don't know. I get distracted and I started asking questions about things that I think most people don't give a crap about. But I just find interesting as we're talking, how did you who reached out To me, and said, I think you should be on the show, I'm forgetting the pathway that you got here.

Unknown Speaker 1:00:07
So we diabetes, Canada had a lot of interaction and a lot of data I'm sure they all listened to, or most of them, listen to your podcast. And then they are working on with the cniv on an accessible insulin pump project. And my coworker, Kat Hamilton, my colleague, she said, Ryan, I think you should go on this. And I did some research. And I'm like, I'd love to go on this. And so she actually reached out to you and said, I think you should have Ryan on the show. And it kind of just spiraled from there. And here we are.

Scott Benner 1:00:34
That's excellent. So let me let me finish up by asking you this, like in your perfect world? What should Innit let's start with an insulin pump? What should an insulin pump do? Or have? Or offer that would be valuable to you?

Unknown Speaker 1:00:51
I think that the marketers, the design teams and the engineers should think about making it accessible from the get go not just for a visually impaired but like, hey, what about an elderly person that wears glasses and can't see the small print? I think that the universal design concept should really be kind of in there, right? Hey, take it out of the box. And with a few adjustments, let's let's whoever can choose whatever kind of options you need, then you can use them, right? Because it's like, just think of it in terms of an elevator. Right? So an elevator was originally designed for people that can't use stairs to get to the second floor. But now on a pre COVID world, if you lived in an office built or if you lived in office, if you worked in an office building, I bet you you took an elevator every day not even thinking about it, they've just come second place. And second nature, I would love for all medical devices, but especially an insulin pump to be like that. Let's not even think about it. It's just there. I know there's I know, that's, you know, a very simplistic approach. There's approvals. There's Health Canada, there's this there's that there's all kinds of different things that it has to go through. But don't, I guess Don't be worried about the money that you put forth, like do it because it's expensive. And it takes a long time. But just think about me with the bed, I made the bed. It was difficult. But look, it's it's working. So I think there's a lot of people that would come out of the woodwork and say like, there's tons of people that I know, in Canada, that won't go and use a pump, because they know it's not accessible. And they're worried about their vision and their health and going low going high in the middle of the night. And then not to be dire, but not waking up the next morning. So it's you know what, even for me to tell how much battery life isn't my pump, or what time it is with my pump, right? Pretty much my pump is a fancy insulin pen. It that just pumps insulin to me all the time, but I can't use the really cool functions. And that's what I would like to be able to do whether or not I tend to use all of them, you know, I would like to be the gatekeeper of that decision, not someone else that designed the pumps thinking, Oh, here, this is going to be great for everybody. But it's only great for, you know, what, eight out of 10 people. So

Scott Benner 1:03:11
would it be helpful to you if manage if if the device is moved into, solely into a cell phone, because then text to speech would be more easy like that. Like I'm imagining if you could run your insulin pump from your cell phone, and you can run your CGM from your cell phone, then it wouldn't be difficult for these companies to build coding that would allow you to say like, Hey, you know, my phone, what's my blood sugar? And have it tell you that or?

Unknown Speaker 1:03:40
Absolutely, no, that's that's where it goes. And you know, there's a lot of security purposes, a lot of security concerns and things like that, right. But I mean, we can do all of our banking on our phone, and we can do all of our other things on our phones. So why can't we do this? Yeah, you look at it, and we're working there. And some of the pump companies have even reached out and said, like, hey, like, we're going to be able to do this, right? We're looking into apps, and they're in trial, and this and that, and it's really, really awesome. That's, that's what I would love is just to, and when you look at it, Apple and Android have done the hard work for you. They have talkback and voiceover that really I can almost do anything. I can serve Facebook, I can send text messages, I can send emails, I can dial phone numbers, I'm on my smartphone right now. I'm on a zoom call with you. And it's completely accessible, right? So it's they've done the hard work by integrating the voice for you. So let's let's look at this and say how can we move forward from your end on just making buttons like, oh, I want to give myself four units of insulin? How does that look on a pump? Or sorry, not a pump on a smartphone app? Or, Hey, your your average agency is this like how can we do that? Right like I understand graphs are probably never going to be accessible for me, just based on my state. I'm not speaking for everybody visually impaired but it's it's there's got to be a Other ways? Yeah.

Scott Benner 1:05:00
Well couldn't sit. Well, let me ask you a question if if the graph was not even in Braille, but just so that you can if it was raised, wouldn't you be able to kind of feel like, here's where the insulin went? And here's where I started going up. Wouldn't that be valuable to you?

Unknown Speaker 1:05:19
Like a tactile graph? Yes. It would like even giving me the option to print one, right? Because I think that would be great. Like, I don't think there's a way to do that with the phone screen. But yeah, for sure. Like, I think that would, that's a great idea. Yeah, one I hadn't even considered before

Scott Benner 1:05:35
you have do you have a printer that prints raised?

Unknown Speaker 1:05:39
I'm lucky because I work for the Institute for the Blind. So I could do it at work. They're very expensive. At this point, it's kind of I don't want to say new technology, but making them smaller and Bluetooth. And so like, there are braille embossers. But traditionally, they were big and bulky and cost 1000s of dollars. And they still do but now they're desktop models. So I could see it becoming a little bit more reasonable and affordable in the future. But yeah, to be told, not a lot. One of the major myths is that everybody that's blind uses Braille. And that's not the case. I learned braille to read Abbey books. And the people in my scenario, usually don't learn braille, because you have your voice, you have your audio books, you have those things, but I think the the the missed key messaging is that no matter how technologically savvy we get, are we you know, we use Braille is our version of print, and just for you, like a print documents, never going to lose its value, there's always going to be a signature required on it, or something different right mail delivered in your mailbox, that sort of thing. And I think that's the equivalent for a visually impaired person is the Braille.

Scott Benner 1:06:49
And I was just really imagining, I mean, I know what I've learned from looking at the Dexcom graphs for my daughter, and there's so much to be inferred from them. And you start to understand how to use the insulin differently. And, you know, I'm gonna say better by seeing the impacts visually, it's just, it really is. But you could, I mean, if you had that graph, I'm imagining you would like, like the last three hours of your blood sugars, and the knowledge of where did I put the insulin? Where did the food go in and being able just to feel that rise? And kind of imagine in your mind, I would imagine you could do a better job with your insulin after having those experiences over and over again. So my, my point

Unknown Speaker 1:07:30
and just think of it even in a simpler terms, I'm not trying to be nosy here, but does your daughter use the CGM? She does.

Scott Benner 1:07:36
She uses a girl you're lovely. You're not trying to be nosy. You can ask me whatever you want, right? She's using the Dexcom G six right now.

Unknown Speaker 1:07:43
So when she, when she tests her sugar, I don't know if she ever gives you a look. But there's always arrows next to it, right? So there's either like three going up, which means your blood sugar is going up a lot, or there's like, one going down, you're starting to get low, maybe you should, you know, eat something like there's those arrows. Up until recently, I had no idea those arrows were there because it didn't read anything out to me. But even that information would be so awesome to know. And it's changed. Like even with the libre now it'll say, Oh, you're 8.1 and your blood sugar is rising rapidly. So at least now I know. It's like, oh, I should correct this. Right? Whereas before it was just the arrows were there for the sighted world to see. But not for Ryan to us.

Scott Benner 1:08:26
There's a lot. There's a lot of low hanging fruit here for you. If people would get on board and work towards that. It sounds like to me. Agreed. Yes, absolutely. Yeah. Wow. All right. I'm gonna ask you one silly question before we get done. Because you have to wait for something to be read to you when you're looking at Facebook. Do you ever get halfway through somebody's thought and think, Oh, what a waste of time I can't believe I put much effort and if you don't I'll

Unknown Speaker 1:08:50
do you one. I'll do you one better. I don't know if you use Twitter but like you can put emojis in your name and Twitter and some people go crazy where it's so the my screen reader will read out emojis it'll be like, Oh, smiling face and kissy face and heart. Heart shaped eyes face like it reads out all of them. And they all have different descriptors. But it's funny because some people use them wrong. They're like, oh, like for one of my friends. She kept sending me a distressed face. I'm like, are you okay? She's like, Yeah, I'm sending you smiley faces and like they're described to me as distressed face like I was seriously worried for you. But back on Twitter, if you put more than like three emojis in front of your name I won't even read what you're writing because it goes I don't get to skip over. It's like this emoji that emoji this emoji that emoji this emoji that emoji. Ryan who he wrote and then you get into it, but legitimately you could be waiting there for like, and this doesn't seem long, but 16 seconds as it goes through emojis and I'm like no, skip.

Scott Benner 1:09:47
It definitely seems longer than that tweet is just not valuable at all. You're like, oh my god, I sat through I sat through eggplant poop blah, blah, blah so that I could get exactly I can't get this crap out. I just I don't know, I couldn't find my I pictured myself being like, oh my god just so weird. I know, when you start reading some things that people write and you get halfway through, like, ah, there's time, I'm never gonna get back. And I noticed that I'm reading it now. So that's amazing.

Unknown Speaker 1:10:14
There's those Facebook posts where it's just a picture, like there's something called alternate texts. So I put them in all of my pictures. So it'll describe loosely what's in the picture. Ryan sitting with Abigail on her lap, that's pretty much all you need to know. And then I have visually impaired friends, they love it because they can enjoy the picture. They can enjoy it like you would, but it's a different way, right? But then there's some people that just post a picture. And it's nine times out of 10. Because people just don't know. They're like, Oh, blind, people don't use Facebook or whatever, right? So it's that they don't put anything. So it's just a picture of their kids on their first day of school. But all they do is post a picture. And I just scroll through it, because it's like, oh, this is a photo and it might have trees in it. And in that, so it kind of describes it to me, but it's interesting.

Scott Benner 1:10:56
Yeah, that really is something. All right, man, listen, this was terrific. I really appreciate you taking the time to do this.

Unknown Speaker 1:11:02
Anytime. Hopefully, you'll have me back at some point. Well, I

Scott Benner 1:11:05
haven't I don't normally have people background, but I maybe I will. Oh, that's because people aren't great. It's good. Just like, you run, uh, you know, tell people for a second you have a podcast to write. That's, that's not about like, what else do you do?

Unknown Speaker 1:11:21
Yeah, so it's an it's an internet radio show. And it's every Friday at 315. Eastern, and it's all about audiobooks. It's called it's a 15 minute segment on a bigger show that every day during the week. And it's through Accessible Media Incorporated, and they're out of Toronto. And they're a television and an audio kind of channel. And what they do is all their programming is in described definition for the blind and closed caption for the Deaf. Yeah, on screen so and we do different lifestyle tips and tricks and hacks and that sort of stuff for the blind world. And so one is mine, the fun one, I get audiobooks every Friday afternoon, hey, here's what you should be reading. Here's some cool news. Here's, you know, where you can get the books, that sort of thing. So we do it every, every Friday at 315. And you can catch it at ami audio.ca. Listen Live.

Scott Benner 1:12:11
And I bring that up, because you'll have an appreciation for the fact that it is October 18 right now. And if you contacted me today, and you weren't you you don't I mean, like I have you on I have like a couple of VIP days held aside so I can always slide stuff in. But if you're just a regular person trying to come on the show, I think the next availability is in May of 2022. Right now to record.

Unknown Speaker 1:12:34
So that's a good situation to be in. Yeah.

Scott Benner 1:12:37
So I'm good. Listen, that's amazing. But that's why I never ended up having people back again. Because I don't even know when to like slide them in, like, you know, like, what am I going to do this?

Unknown Speaker 1:12:46
Of course, while you're very busy, but let's keep in touch. We'll keep it at that for

Scott Benner 1:12:49
you, though I say differently, because I want to I want to hear about you getting locked in an elevator again, I have to be honest, I want us to get very close, right? So that we can have very, I want to have a conversation with you one day, that would be a conversation that you might have amongst three people who are in your situation, do you not? I mean, like I really want to see behind how your life works in a way where we're not you know, I don't what am I saying? Like we're everyone is understandably careful about talking about things because you don't want to insult people. You don't want to assume your situation on somebody else's, like I get all that. But there's I feel like there's a backroom to your life. That's hilarious, and I'm not hearing about it. So I think maybe if we learn each know more about each other, it might come out as we're talking, or am I wrong? Sounds great.

Unknown Speaker 1:13:34
Am I wrong? It sounds great. I got tons of stories. There's all kinds. Yeah, absolutely. And it's just the even if the everyday Ryan just does silly things right? There's there's been times where you and I thought I was going to eat an apple but it was an onion note. Like just simple things like that. Right? And I know that sounds strange, but now I've kind of got my got my bearings underneath me. But you know what best laid plans always go to waste. So absolutely. I'm more than willing to talk about those.

Scott Benner 1:14:03
Listen, right? You don't know me well enough. But I stopped from asking you about having sex while you were blind. I stopped myself for an hour and eight minutes. So I'm super proud of myself right now. And I'm just gonna say goodbye. Okay. All right. That's really what I wanted to ask you pretty much the entire time and yet I was an adult, and I did not do it. But seriously, though, I really appreciate you doing this. I really do. It's really just a different conversation for me. So

Unknown Speaker 1:14:30
I'm gonna you wouldn't be the first person to ask me those questions. So it's no it's duh. Yeah, absolutely. Well, we'll touch base.

Scott Benner 1:14:36
Yeah. All right, hold on one second. Thanks

Unknown Speaker 1:14:37
so much for having me.

Scott Benner 1:14:47
Hey, huge thanks to Ryan for coming on the show and sharing his story with us. I also want to thank the Contour Next One blood glucose meter and remind you to go to contour next one.com forward slash juice box. And of course Are us med get that white glove treatment at us med.com forward slash juicebox or by calling 888-721-1514. Get your free benefits check today. Don't delay today and don't delay they ride. If you want to check out the place where Ryan works, it's C n i b.ca not.com. It's from the Canada, it's different. Thank you so much for listening. I'm going to be back very soon with another episode of The Juicebox Podcast. In the meantime, you should check out the podcast, Facebook page Juicebox Podcast type one diabetes, it's a private Facebook page with 24 25,000 people in it. Those people are just like you they use insulin or love someone who uses insulin. And they're just trying to figure things out. And they're in there helping each other. And I stopped by quite a little bit. I'm like the, like the neighbor in a sitcom who's you know, comes by once or twice every episode. I'll just like stick my head in the door. I'm like, Hey, what's up everybody. And then, like I says, I'm funny, or I help with something or I'm even a sounding board sometimes then I'm gone. Poof. And then it's back to the regulars to people who really, you know, are the heart and soul of the show, which are in this case, the people in that Facebook group, really a special group of people check it out. Juicebox Podcast, type one diabetes. On Facebook, it's a private group. So you'll have to answer a couple of questions coming in to make sure that you're a real person when it asks you where you heard about it. For just for people who heard about it here, let's put a code word in. And I'll know you guys heard about it here. And then I will just let you in immediately. I'll be like these people heard about this in Episode 667. A code word. How about just 667? That'd be easy. Where did you hear about it? Episode 667. Boom, you're right through. Alright, thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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