#667 Type 1 and Vision Loss

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

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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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