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The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

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#435 Josh has all the Feels

February 01, 2021Scott Benner

An emotional type 1 story

Josh and his daughter have type 1 diabetes, he shares their story and his emotions.

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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, everyone, and welcome to Episode 435 of the Juicebox Podcast. Today's show is with a type one named Josh. Josh has married has two children. One of them has type one diabetes, and he's concerned that another diagnosis may be on its way. This show is sponsored today by the glucagon that my daughter carries. g evoke hypo Penn Find out more at G Vogue glucagon.com forward slash juice box. This episode is also sponsored by the Contour Next One blood glucose meter. Arden's been carrying the Contour Next One for a couple of years now. And it is the most accurate, easiest to carry and easiest to use blood glucose meter that she has ever had. Find out more at Contour Next one.com forward slash juice box.

I think this episode is exceptionally emotional. Josh is going to be incredibly honest about a number of things going on in his life. And that's going to lead to a very real conversation. As a matter of fact, he's reached out since we've recorded just last week, and sent me an update which I'll put at the end, so it doesn't mess up the timeline of the story. Please remember while you're listening, 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. or becoming bold with insulin. With this tiny little bit of time that I have left before the music runs out, I'd like to remind you to find the podcast on Instagram. It's at Juicebox Podcast on Facebook at bold with insulin, and the private Facebook group, which now has nearly 9000 members we're talking about all kinds of stuff with Type One Diabetes, that one's Juicebox Podcast, type one diabetes, check it out.

Josh 2:19
My name is Josh Toby and I am a type one diabetic. I live here in Texas. I have some signal loss in my Dexcom we actually just changed the Dexcom for my daughter who is also a type one diabetic. Okay.

Unknown Speaker 2:36
How old is she?

Josh 2:37
She is six years old.

Scott Benner 2:40
Okay, how old were you when you were diagnosed?

Josh 2:43
Six years old.

Scott Benner 2:44
When she just diagnosed this year,

Josh 2:46
she was diagnosed one week shy of her six year birthday. She was diagnosed when she was five. Okay, middle of November.

Scott Benner 2:53
I feel like for the purposes of good story, we should just say she was six.

Josh 2:57
Okay. Yeah. So she you know, it's it's just strange that she had a lot of the same symptoms when she was diagnosed that, that at least the stories that I heard about myself, were that were both, you know, six years old. And but she took it, you know, a lot better than I did when I was six, back in 1991.

Scott Benner 3:24
Is that your recollection of how you took it? Or is that from the stories people tell you about how you took it?

Josh 3:30
I think it's more my recollection. I don't know if I know. I don't think my mom has really told me many stories about how I how I took it rather than just how things were okay. You know, and just maybe a little bit memory of you know, this this first year or two of adjusting to, to everything.

Scott Benner 3:53
Yeah, well, so, I mean, you're 32 six. So while ago What are we talking about the 90s 9191 Okay. So what was your recollection of it? Since you have some I'm always fascinated when people remember anything from their early life. So

Josh 4:10
you know, I remember going to the hospital and getting the blood sugar. I don't remember stain and, and I I wish I had asked my mom if we did stay overnight, but I don't. I don't remember any of that. I just remember really high blood sugar. It was actually on Mother's Day weekend. My mom did tell me that we I had a baseball game that morning. And Previous to that baseball game she had talked to like our pediatrician and and with the symptoms. And she was like, yeah, I'm pretty sure it's diabetes, so take him in. But she didn't want to interrupt my baseball game. So we went up after the baseball game, and after lunch after the baseball game. My mom's a nurse by the way. So she of course recognized a lot of the symptoms that were happening, but at the same time Just like, you know, they say you only get a paragraph and a half about Type One Diabetes when you're in nursing school so she had a lot to learn of. I think it's a interesting, my main symptom was the was just pain everywhere, just constantly paying and, and drinking so much milk before bed that that morning at the baseball game, apparently I had to go so bad. I was in the outfield. And so I just walked back into the trees peed came back, you

Scott Benner 5:33
know what I was just gonna say, and this is I'm gonna I'll let out a little bit of truth here right now I was on a baseball field last night watching my son play and peeing in the trees at a baseball field is about as American as apple pie pickup trucks than anything else that you can possibly think of. It is. It is, it just is how it's done.

Josh 5:56
When you're, and when you're six years old, you get put in the outfield, maybe because you're not the fastest or something like that. And maybe I don't want to insult anybody that's in the outfield at age six. But that's why I was out there. Okay. And, and we, I just felt like, also at age six, not a lot of balls went out to the outfield. So I had a lot of time on my hands right

Scott Benner 6:20
out there thinking about life and bug and the flowers. I saw a boy one time get entranced by a moth in a night game, you know, like sometimes they let the little kids play at night under the lights once or twice to give them the feeling of it and he just wandered after it like he was so just absolutely enchanted by it. And he couldn't and everybody just let him be it like you said that age. Nobody's hit the ball out there anyway. But it's it's uh, it's not uncommon. I don't think did you keep up with with baseball as you got older?

Josh 6:56
No, I went from a car. It was soccer before baseball, then it was baseball, then it was basketball. And but I would probably count baseball is one of my more watched sports. You're not much of a sports person. But yeah, baseball is something calming about it.

Scott Benner 7:12
Well, I'll tell you, you know, made me think and I know there's no real way to do this, because it's always gonna be so long ago for people. But I find myself thinking there is an episode in talking to someone's parent. Only about the time from when they realized the kid had diabetes. Until they took them to the hospital and what they fought and tried to accomplish like how much life they tried to get into that space in between those two moments. I imagine your mom just thinking like, let him finish the game. And then I'll take him to lunch, we'll do something normal and then I'll break his heart and drag him to the hospital. Right. You know,

Josh 7:51
yeah, the the embarrassing story about that is that my mom wanted to go to the hospital right after the game, but my dad was very insistent on going out to a steak house and getting a big a big lunch. Which, you know, she of course was worried about me and my blood sugar after a big lunch. So

Scott Benner 8:10
was he just worried about being hungry at the hospital? Maybe?

Josh 8:13
I don't know. I don't know. I didn't ask my dad. always remembers this is me pain on the on the Legos in in our in our game room. So that was the other domain.

Unknown Speaker 8:25
No kidding. Yeah.

Scott Benner 8:27
You feel like you have to aim at something. Right? Like on the floor would be ridiculous. But the Legos on the floor seems reasonable.

Josh 8:36
I of course, I don't remember any of that. That's the sleepwalking out of it. And then just the just getting constant pain. So yeah, it's crazy.

Scott Benner 8:44
So okay, so you're diagnosed? How do you from your recollection to your experience with your daughter? Do you see any similarities or differences?

Unknown Speaker 8:56
Oh, man.

Josh 9:00
The similarities would be, at least in her personal experience. The only similarity I would think would be you know, the nurses still wear scrubs, and they take your blood sugar with a ridiculously sized meter. Other than

Scott Benner 9:18
that, it's all new, right?

Josh 9:19
Pretty much I mean, I mean, I don't know what was in my mom's head. I can, you know, I can imagine. She's a very emotional person and she'll be listening to this but she knows she is. And so I can just I can imagine there because there was so much unknown for me. And there still was, you know, 10 years after I was diagnosed. But when, when. So what happened, my daughter started they would have the normal but not very much. You know, maybe pee in the, in the, in the bed when they were younger. But at five, you know, she had she had a couple years of not doing that. But every time she would, my mind would start racing. So then she started getting up one night and was, you know, wandering around, and I took her to the restroom. Okay, that's one night. And then it happened again the next night. And my, my heart was starting to break. And I said, Okay, after the second night, if this happens a third night, I'm going to test your blood sugar in the morning. And, sure enough, she went, she did the same thing the next night and tested the blood sugar in the morning. And she was 456. And, you know, of course, not everybody has those sorts of abilities to do that. I hadn't, I had, I had 20 meters probably in my house. You know, I could have given her insulin right there. But you know, not not really what you're supposed to do. And, and because of that, you know, we didn't really know what to do. We're like, okay, I don't feel like she needs to go to the ER, she's not. She was complaining a little bit of stomach issues. Like she didn't want to eat stomach issues. But wasn't really, it wasn't really much anything else. And so, we could be called around to the primary and of course, the primaries doing the CIA and saying go to the ER, everybody's saying go to the ER, finally. So finally, after probably a few more blood sugar tests, just to make sure, you know, basically dose here and alcohol swabs and make sure that it is time we did that. So the experience the experience, I was saying about the unknown My my, for my mom, it was all this unknown. And for me, it was a flood of known who knew

Scott Benner 11:59
exactly what was coming. Yeah,

Josh 12:01
I yeah. And and so did my wife. My mom's a nurse, I married a nurse, I always have to keep a nurse nearby. And, and so she knew what was going on, because she'd been married to me too. And but she didn't. Like, you know, no one kind of knew what was in my head because I was reliving my childhood. Yeah. But like you asked, there's what was different? It turns out everything was different, right?

Scott Benner 12:30
Your childhood is gonna be completely different come in many ways, but specifically about diabetes than yours was. And that's it. Did that become comforting at some point? or How long did it take for that comfort to creep in?

Josh 12:45
It became comforting at some point, let's see.

Unknown Speaker 12:50
It probably took

Josh 12:52
maybe two, two weeks, two to four weeks after everybody under the sun telling me about how I did a good job catching it early. How isn't it good that you already know what to do? All this stuff? I'm I'm really thick. So I just it takes time to get through to me?

Scott Benner 13:15
Well, no, I would say Josh in fairness to you. It's not that simple, right? Like it is. It's it's academically that simple. Those things are all true. And they are definitely things you can lean on. And it's but it's emotional, first of all. And secondly, it's not fair. It's not what you hoped for. It's not what you planned for. It's, it's all of those things. And it's hard. You're young guy, right? I mean, if she's six and you're 32 What are you? What are you? 2026? When when the 30 fat? Excuse me? 3434 excuse me, so I was 28 years old. Couldn't get married that long, right? Yeah, no,

Josh 13:51
actually. Let's see. We got married when I was 19. No, 19 I think so. Okay.

Scott Benner 14:02
It was legal. You didn't steal or something like that? No,

Josh 14:04
we've been married for 13 years. I math. I don't know. We don't worry. We've been married for 13 years,

Scott Benner 14:09
you're married. You're building a family. You're dealing with your own health stuff because you have diabetes. You know, you get a house you think I'm gonna make a baby, this is gonna be a thing. Here's what's gonna happen you plan it out in your life at no point when you're planning out in your life. Do you think you know she's gonna get type one even though you had it? I don't. I don't think you plan for it. You know what I mean?

Josh 14:28
Right. And, and and in some ways, we sort of kind of you know, did I have heard people talk to you about like, you know, and you talk to you know, I listen to podcasts all the time. And what's the basis basically by Sam, you know about talking about Okay, you still gonna have kids yada yada yada if? And, and I mean, the answer was always Yes. But we went to we went to a when we got pregnant with I have three kids. So I I have a nine year old. This isn't we're talking about my middle one, which is six and my two year old. We went to a genetic console to talk about this and and something else. But they said, because I have nobody else in my family. I don't know anybody. Right? That's a tough one. I mean, up until, you know, like this listening to this podcast, I still don't really know anybody, you know, but now it's more of a community. And that was me growing up to just, you know, throw that in there. It's so it's I forgotten where I was going with this. Okay, you're

Scott Benner 15:41
you're upset at the moment, which is, yeah, understandable. And I don't want to push it too far.

Josh 15:47
As sensitive. I'm a sensitive boy. Well,

Scott Benner 15:49
I have to say, Josh, I am too. This could turn into two guys crying on a podcast. I'm trying to keep that from happening.

Josh 15:57
But I was saying about looking for the diet. Like, we were gonna have a baby, we were gonna, we were gonna do that I wasn't, you know, there was no. To me, but to me, they gave me enough assurances that it is not likely. Because I and I feel like, I don't know this for certain, but I feel like at that time, they didn't, maybe they weren't quite sure of the links, that they are pretty sure of now, you know, that the genetic modifier that gives you a an autoimmune disease, though it's a spin of the wheel. Which one? Right? So if they had known that they would have known, you know, my, I had, I have hypo thyroidism, my mom does, you know, and all these other things that, you know, you know, everybody gets to spin the wheel. Yeah. And I also have something called alpha one antitrypsin deficiency. Have you heard of that?

Scott Benner 16:50
No, but let's take a tour and find out what that is. Please,

Josh 16:54
alpha one. Okay, so I'm gonna do my best here, because I don't really know it either. I feel like I'm single. So go ahead, go for it. Yeah, Google, Google. And the probably the best thing is to image search it because it needs the images. My understanding is trypsin is one of those body juices that helps almost kind of keep your organs oiled and working and protected. And so trypsin is made in the liver. And I believe, and then it's supposed to also help the lungs. So it's supposed to go up to the lungs and help with that. And so with alpha one antitrypsin when you're young, they are checking your liver and your lungs to make sure that it's, it's helpful. Okay, and that are that you have that you don't have any deficiencies or anything like that. I always thought it was a really good excuse for my mom to say you can't smoke and you can't drink. But,

Scott Benner 17:53
you know, so she knew does she have this to

Josh 17:56
know she does not have this? Okay. So this is

Scott Benner 17:58
her to condition. So if somebody has it, right,

Josh 18:01
it is a inherited condition. Both of my parents are carriers. So that's the positive are my capital are negative. What is it? Well, do you know what I'm talking about? Yeah, dominant, recessive, dominant and recessive. Okay, so then they made they made my brother he is. I don't know what he is. He might be a carrier. Then I so here's the sad part. I should have a sister that is two years older than me. But she died from alpha one antitrypsin deficiency, or she died from needing a kidney or liver transplant, okay. My mom's gonna hate me for not knowing that. liver is

Scott Benner 18:46
what I think is a liver transplant. Like your mom's gonna help you but but I know

Josh 18:50
that. But um, they couldn't find one. And as you guys I want to use when she died when she was about one.

Unknown Speaker 18:59
Oh, my goodness.

Josh 19:00
And so then, for some reason, my parents decided to, to have me and and of course, when I'm born, they ice is gonna get trippy. When I when I was born, they they tested me and my brother, you know, for the for the deficiency. And when they drew the blood, they accidentally drew from my brother's vial both times.

Unknown Speaker 19:28
Okay.

Josh 19:29
So I was negative.

Scott Benner 19:31
He was negative. So they thought you were negative? No. Is there a care that you missed out on for not knowing?

Josh 19:38
Not any preventative care? I don't believe so. Yeah, but I started getting a little bit sick when I was a baby. And so my mom who actually remember she's a nurse, so she she wrote some sort of journal article about it about f1 way back in the day and stuff and and so she she recognized it and they went back and they retested and I am positive You know, and so then they eventually figured out that that must have been what happened. My mom, then, you know, and and I, you know, there's there's a higher power, or something out there that made that happen because my mom said that, if she knew that I was positive detachment, I mean, how can I mean, she would have felt like, she's already been to death of a child, you know? And so. So yeah, I had, I don't think I got a little bit sick, but nothing that, you know, obviously happened to my sister and but what we have come to find out now 30 years later, is trips in their league linking the amount of that, that a lot of type one diabetics have a lower amount of trypsin in their body, I guess, okay, remember, I'm, I'm not really a sciency guy,

Scott Benner 21:02
don't worry, I'm hanging with you good.

Josh 21:05
So that trypsin isn't is you know, not just lungs and liver, it's helping oil, all of the organs and protect all the organs and making, you know, making maybe those white blood cells work better, which actually, I guess would be a bad thing. But, you know, just making things work better. And. And so we found this out probably shoot four or five months ago, five or six months ago, right around the time that I saw you at, in Dallas, J jdrf. And that just blows my mind. So my alpha one antitrypsin that I've had for all my life, interacted with whatever virus caused that, that gene to finally you know, pop and start my auto immune attack on my pancreas, right, that causes in my diabetes, and new diabetes, of course, causes a whole bunch of other stuff. Wow,

Scott Benner 22:13
did you? Wow, I'm gonna soak that in for a second. Did you have hypothyroidism prior to diabetes or after?

Josh 22:21
After after? I mean, I might have, they didn't. They didn't? Well, they didn't give me any meds on it for it until like, when I was 22, or something like that.

Scott Benner 22:33
You started noticing? Like, what was it? Like? What got you for the hypo? Was it. Energy sleep?

Josh 22:41
No, actually, I didn't. I didn't know anything. Oh, it was my my. I mean, I was I was tired. You know, 20 year old, you know, call master student at that point.

Unknown Speaker 22:55
Tired, right?

Josh 22:56
Yeah. Right. No, it was just my I've been presented with these things with that. Cholesterol stuff. I guess not that one, but the cholesterol and, and heart medicine as a preventative. As a Hey, your body's being taxed by diabetes, you should take this to help to help those those out. Right.

Scott Benner 23:18
And so that a lot, actually, the people take cholesterol medications, like things that that you would normally take, if you were approaching or having a problem. Sometimes they think it is preventative, right?

Josh 23:28
Yeah. Okay. Yeah. And that's what I've been told. I know, sometimes my cholesterol can be a little bit off, but I have chickens, and I eat a lot of eggs. So I'm not going to stop that.

Scott Benner 23:41
Well, what are the chickens gonna do with the eggs? If you don't eat them? They would turn into more chickens. Now what would you do

Josh 23:46
now? Well, we don't have we don't have a rooster. We don't have a rooster. Yeah. So maybe they would start they would try to make them into into little chickens, but they would fail. And yeah, I tried

Scott Benner 24:00
to get you to say something. So we could call the episode cockadoodledoo. But I guess we're not gonna get there. So that's fine. Don't worry. Oh, no, no, you can even say, let's not force the issue. So I have to be honest with you. And since I guess, you know, it's not you know, the, the alpha one antitrypsin deficiency does not seem like a fun thing to have. Are you feeling the effects of it? or How is it? I

Josh 24:25
don't think so. No, I really don't think so. I am and I am. I have I have offered myself to a lot of different studies done by pharmaceuticals or whoever, right for that. But because I have never been symptomatic. They don't ever take me I saw one that they were actually looking for. No one was looking for someone with no symptoms. They wouldn't take me because I have diabetes. So I think I'm thinking like in three or four years that they're going to have something where they're actually looking for diabetics. But I could be wrong. Okay. Yeah, I don't know. I don't really know what besides you know, death of my my sister. I don't really know what happens with trypsin Alpha one.

Scott Benner 25:13
It's fascinating. I mean, it's I'm on the NIH website here people with alpha one antitrypsin deficiency, we usually develop our signs and symptoms of Did you step on that dog have lung disease between ages of 20 and 50. By the way, let's just digress for a second, I bet you cannot find another podcast while during the reading of a serious disease. Someone jokes about stepping on a dog the earliest symptoms are shortness of breath following mild activity, reduced ability to exercise wheezing. Other signs and symptoms can include unintentional weight loss, recurring respiratory infections fatigue, rapid heartbeat upon standing. affected individuals often develop emphysema, which is a lung disease caused by damage to the small air sacs in the lungs the halophila characteristics features excuse me characteristic features of emphysema. By hacking we know emphysema. About 10% of infants with alpha type one develop liver disease, which often causes what jaundice apparently, approximately 15% of adults with alpha one, develop liver damage cirrhosis due to the formation of scar tissue in the liver signs of cirrhosis both on rare cases people with alpha one develop a skin condition which is characterized by hardening skin and painful lumps or patches. Well, holy crap. That I

Unknown Speaker 26:36
don't think I've

Scott Benner 26:38
I mean, I'm glad you don't have it. But I mean, I'm the you don't have symptoms of it.

Josh 26:42
Yeah, I mean, I'm now I'm like wondering like, okay, so when my firstborn was jaundiced a little bit he didn't have to stay any any. But it was jaundice did my mom properly It was like, you know, that's, you know, triggering and your poor mother.

Scott Benner 27:00
And I looked at trypsin, too, because you specifically talked about, it's a serum, this doesn't make any sense. I could read these words and understand them. But you're saying Who told you that people would type one can have less trypsin?

Josh 27:17
It's some sort of study, I could probably my wife is the smart one of us. And so she's and so she found it and read it, and I can I can send it to you after this. I will put

Scott Benner 27:28
it in the show notes if you send it and I know she's the smart one because you stepped on the dog sitting down. So that's, um, so I would I'd like to add that to it. And, you know, just so people can can follow along if they want to. Okay, so, holy Hannah. So how old were you when you realized you had this? Because one, yeah.

Josh 27:50
I mean, I was probably one or two. Okay, maybe three when I'm when? When my mom took me in or whenever I got sick.

Scott Benner 27:57
From around there. Okay, so it was a birthday check. No, obviously, yes. And then a little while later, okay. Okay. Why don't we go back to something more upbeat like Type One Diabetes first?

Unknown Speaker 28:12
Yeah, there we go. Yeah.

Josh 28:14
So yeah, we I mean, well, back to that genetics appointment. You know, they they tested? My wife. Yeah, it doesn't actually this was after my brother, my son was born, but they tested my wife. And they found out that she is recessive recessive. So none of my children are going to have alpha one. But they're all going to be carriers. Okay. Well, listen

Scott Benner 28:36
at this point in history, Josh, we're all carriers, apparently.

Josh 28:40
Right. Yeah. Oh, so you know, you know, we're talking about current event history COVID attacks your lungs. You don't see them? You know, talking about all those people with alpha one antitrypsin that, that the COVID is going to be even worse for you. When then on top of the type one diabetes. Yeah, that's because like, nobody has off went on trips, and it's very rare. My understanding. So all my kids will be carriers. And they there's, I guess there's research, I don't know if it's the same research that my wife read that even as a carrier, sometimes you will have lower levels than not like, you know, out of the abdomen or out of the normal but just lower right.

Unknown Speaker 29:23
Okay, so,

Josh 29:24
hey, maybe maybe that's what happened. You know, and, and I think during those first two to four weeks of my daughter's diagnosis, I kept on going back of like, why, you know, of course, it's, you know, I still I still battle with the idea that it's my fault because I'm pretty sure I mean, come on.

Scott Benner 29:54
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Josh 32:36
I still battle with the idea that it's my fault, because I'm pretty sure I mean, come on.

Scott Benner 32:42
You think the diabetes came through your bloodline? But that's not fun. All right, Josh, let's take it let's take a detour for a second cuz I watched my wife do this for years. And everyone knows who's married. You can't? You can't listen, you're not allowed to tell your wife thinks. I don't know why. It's just the rule of like, you know the universe. So here's how I'll put it. I got a message last night, from a mother of a child with type one who's doing a terrific job with their kid. And she's come a really long way in a short time. But her messages are panicky. And so I said to her, can we talk like friends for a second? She said, Sure. And I said, Good. You gotta calm down. Like, just relax. I said, you're doing terrific. I know you want to be doing better. And but you're doing terrific. You have to calm down. And she said, Oh, my husband keeps saying that. I was like, why are you not listening to him? When he tells you you need to calm down and she goes, I don't like it when he tells me that I was like, yeah, I'm not allowed to tell my wife to calm down either said, but I love that I was able to tell it to you. It's very freeing, because I need to be told to calm down. Sometimes I'm not saying it like a gender way like, you know, lady with vapers. I'm just saying that sometimes people get an idea caught in their head, and they just can't let go of it. And I wish I could have found a way in that moment with my wife while she was blaming herself because there are autoimmune issues on her side of the family. I just kept saying it's not your fault. It's no one's fault. It's random. It's you know, how could you be at fault here and she would never listen to me. And I wish I could have just told her. You know, like I was a person outside of her because I think if someone could have just told her instead of me, she would have accepted it better. So this is my chance, Josh to make the world a better place. You got to calm down, man and ain't your fault. Okay. You didn't do it? You know,

Josh 34:33
it's, uh, it's one of those things where you can point at all the science and it's, it's, it's something it doesn't affect me day to day but it Yeah, it's something that I feel. I know. And that, you know, talking about like, okay, alpha one maybe maybe causing or helping to cause type one diabetes, and then type one diabetes and all those side effects that come from that and that's one of those is major depression. I was doing diagnosed with major depression. Okay, this summer, June I think it was before she was diagnosed. So last June. So I'm,

Unknown Speaker 35:09
when did we meet?

Josh 35:11
We met after she was diagnosed, and this year, January, February, whenever that was fine. I

Scott Benner 35:17
don't want to be blamed for this depression is what I'm saying, like is meeting me can throw people into a into a tailspin. So, okay, well, we'll pick this apart a little bit. So you were your daughter hadn't been diagnosed yet. You've been living with diabetes for a long time. So my first question is, Do you find it difficult to live with type one?

Josh 35:41
I find it difficult to, um, I find it difficult to live with the effects of type one. Okay.

Scott Benner 35:51
Which one's

Josh 35:52
picking? You know, picking that apart? Because when I was growing up, I was not a good diabetic. And I just you know, when you're at that time, it was NPH. And are you had to give the AR 30 minutes before you had to wait, wait, wait, wait, wait. And then Okay, this is my plate, I get to have bell pepper because there's always bell pepper because there's no carbs in it, and just need something. And I can have 45 carbs for lunch, and I can have 60 cards and so everything is regimented. And remember, my mom's a nurse, I'm gonna keep saying that probably my mom's a nurse. So she follows the rules, you know. And so I say that I want to step back and say my mom was great, because like for Halloween, she would go to, like 10 of the nearby houses that knew me and give them packs of baseball cards to give me instead of candy. So

Scott Benner 36:58
yes, I'm on my mom's you know, that was a setup even as a kid Really? Like this isn't nobody else's leaving here with baseball cards, or?

Josh 37:06
I think I mean, I figured it out after the first house. Whenever like they have a bowl of candy. Oh, oh, Josh. Let me let me There you go.

Scott Benner 37:15
Mrs. Johnson's like Josh is here, everyone. To your places. Yes. The baseball cards. Don't

Josh 37:21
get mad. Don't read on them.

Unknown Speaker 37:23
Don't let them see the Reese's peanut butter.

Josh 37:26
Oh man with Reese's Peanut Butter Cups. Oh, that's the best one. So, you know, and just school. You know, there's there's a certain kid that uh, would would say, why don't you go die? diabetes? Oh, you know, it's just like that. I mean, not very creative. But it certainly hits you because every single day you're leaving to go to the nurse. And and Yeah, you've heard all these stories. You don't

Scott Benner 37:55
know whether to be upset because of the absolute meanness of the statement or the lack of creativity. Really, you know, which way do you go and when you're young? This all is? I mean, I'm assuming every ounce of it hits you with the full force, right? It's just terrible. I I can't imagine otherwise. Wow. Now you get a second on the go die diabetes thing your Fried my mind there? Jesus.

Josh 38:22
I don't think that would be a good, good episode time. I

Unknown Speaker 38:24
don't think we're gonna do it tomorrow.

Josh 38:26
It would turn people away. I'm pretty sure. Yeah. You know, it's just one of those things like that you can't get away from it'd be the first thing I would say to any new teacher. Like, after, you know, probably after second grade, my mom would do everything up until second grade. But you know, I would tell them, hey, just so you know, I'm a type one diabetic, you know, look for these signs, bla bla bla bla bla, or maybe give them a note that my mom had written? Right, you know? So it was

Scott Benner 38:54
just colored everything right?

Josh 38:56
It called a colored everything. It changed. It changed everything. Not to say that I didn't use it to my advantage is sometimes, you know, there was community pools that we would go to. And I would go to the lifeguard and say my my blood sugar's low, my blood sugar's low. So they would give me 50 cents so I can get a coke. So that was nice. Hey, you're taking

Unknown Speaker 39:21
finally, finally a winning all of this? Yeah.

Josh 39:26
Oh, my question. I have to drink a coke. But um, oh, I'm more of a I'm more of a Diet Coke.

Scott Benner 39:31
You didn't really want the coke, but you did like the idea of getting the freebie I gotta be on. I see the attraction of that. I really do.

Josh 39:41
You know, taking naps in the nurse's office. Stuff like that right now. going in for for feeling low, but it just colored it colored my whole life. Yeah. It it made me think that um, you know, into the teenage and and going off to college years that I, I probably won't get married, because I'm going to pass this disease on and or I'm going to, to die young. You know, all this stuff because it I mean, I don't know if it was for everybody, it doesn't sound like it's everybody's experienced, but there was a certain amount of a fear based boundaries treatment, I don't know what to call it always reminding you of, of your feet of you know of everything you know. So that's, that's that's the, as soon as my daughter was diagnosed, that all flooded, I'm like she's This is going to be horrible and this is my child that loves candy and all this stuff. It just just came on me and it took me too long to figure out Oh, wait, she's gonna start where I'm at now. Yeah, you know, we had a Dexcom for her? Honestly, no, actually, she got we were able to get a Libra really quickly because they're just in the pharmacy. So I switched to the Libra for a little bit and gave her my decks calm, she had a decks calm in a week, you know. And, and then, you know, of course now has her own. Well, and it hasn't affected her Go ahead,

Scott Benner 41:26
I was just gonna say, I mean, because I feel like we're gonna move forward here in a second. And I just want to remind you, and everybody that's listening, that what you just said is just 1,000,000% true, you had a very common experience having type one diabetes, you know, a couple of decades ago, it just is what it was. And it doesn't it like, I don't want to be reductive. There are people who don't have great insurance or don't have great doctors who, for whom diabetes might be very similar sell just with some better insulin, right? There's still a lot of people who just are like, you're given insulin and a meter. And they're like, Here you go, this is it. And that's, that's unfortunate and sad. But for everyone who's not in that situation. This is night and day, like your this is, you know, space travel compared to walking at this point. Absolutely. You know, and, and your daughter will have a completely different experience. And I think that hopefully, there'll be a way for you to feel the, the joy in that. And, and move forward. So how did you handle the depression? diagnosis? Did you? Are you doing something about it? Is it did it help? Or were you out with that?

Josh 42:41
Um, yeah, I, I am a counselor, a therapist by trade. And so it took took me Of course, it took me a little bit longer than it should have to go see my own therapist. And so I started seeing somebody and then eventually got on some medication. And it's taken from like, June, when out from like, August or September to a couple months ago, to find the right mix that has been relatively helpful. You

Scott Benner 43:12
know, it's interesting, because it occurs to me that you are the exact kind of soul I would want as a therapist, and you're the exact wrong kind of a person to have to go home at the end of the day, having been a therapist all day. How do you do? Because you've seemed very empathetic, and you're making me happy. I mean, you're like, like, like, not by being like, I came out wrong, like I feel comfortable talking to you. And you're only one of a handful of men who have ever been on the show who have been able to reach inside themselves and talk, you know, from a, from a place of how they feel, which I appreciate. But after a day of people dumping their stuff in your lap. How do you walk away from that? Or can you not

Josh 44:00
it's a it's a trait or it's a it's something you have to either learn. You either have it or you have to learn it, or you're gonna be in burnout land, and you probably won't last as a therapist. So at some point I've learned it, I guess, you know,

Scott Benner 44:24
when people are talking, you listen for words, ideas, know that. No, it's not. No,

Josh 44:28
it's not. Okay. It's I am 100%. I mean, I, my wife calls me a super empath, which I think is something like, again, she's the smart one she's the reader and and maybe it's just empath where it really affects me way too much, right. And so like you know, I grew up with my parents got a divorce and my, like I said, it's, there's just so many feelings and so many everything that Somehow I got all the feelings and my brother got all the things, the brain stuff, you know, he he's able to, to deal with the feelings by just not feeling. And he and I can't get through stuff.

Scott Benner 45:16
Yeah, yeah, there have been times on this show where people have come on and surprised me with the things that they've said. And I've handled it by trying to be more academic about it. And then there have been times where it catches you by surprise. And you feel like your heart opens up and just wants to hug love, man, you feel like your chest is gonna explode. It's very, very interesting. It just, it just struck me as you were talking, it's like, oh, this poor guy like he must. He must leave work some days just been like, Oh my gosh, But to your point, how you you'd have to learn how to deal with it or are you probably couldn't do it very long. Well, people, the people who seek you out, I imagine are lucky to have you. So that's, that's lovely. For you to give yourself like that. For you, alright. Okay, so diabetes sucked when you were younger, kind of thought that's how your daughter was going to be moving forward. It's not you know, that now fighting with feeling like this is your fault. You get diagnosed with clinical depression, is that the diagnosis that's that gets medicated, right? Did that help?

Josh 46:25
Eventually, there's like, the first meds that I took, turn and turn me into, I was just completely numb. I couldn't, I couldn't feel anything. There was no happiness or sadness, which, if that's how you want to be then then you can be like that, but I couldn't enjoy things. So I didn't much like that. And the next one, you know, turned me into a zombie. I couldn't, I couldn't. I couldn't focus on anything. Right. Like, yeah. You know, maybe the next one didn't really work and then eventually found one that worked well,

Scott Benner 46:58
that's persistent, a good fit healthy, you know, for people to hear that they should understand to what's the time like so the day you decide this? Is it? You try one medication? How long does that go? before you try this?

Josh 47:10
That's the hard one, that's a hard one. Because between every med change, it's about a month, right? They want because with antidepressants, it takes at least a good two weeks for it to build up in your system to be effective. You're not gonna pop a pill and be like, oh, oh, shiny. You know, you have it's a buildup, and then you find

Scott Benner 47:34
out doesn't work. We're different. Yeah. And,

Josh 47:38
and so then it's, you don't always have to, like, you know, titrate down, some of them, you do have to titrate down, but sometimes you can just kind of switch over or just add something, you know, try to boost it. Okay, what about, you know, this much Prozac? And then if it doesn't, if it's not working, it's not working? And then, you know, okay, then you just do like a quick titration. And then, you know, adding this thing and see what happens there. But so it was multiple month after month after month, right to defined eventually effects or works. So

Scott Benner 48:16
that's, I've heard, I've heard people say that one before two, it's a

Josh 48:21
it's a dual, dual activator. So it's a little bit more hardcore than some of the other ones. At least that's how I describe it to people.

Scott Benner 48:31
So you've got your there's, you have highs and lows again, but you don't feel overwhelming sadness. Is that it? Well, that's a triumph. Congratulations. Seriously, that's a big deal. Do you think it's something that was brought on by a trauma? And maybe, where do you think you'll it'll be with you for a long time, the need for the medication? And how do you figure that out? Right? Because if you go off it, right, that's the only way to figure it out.

Josh 49:01
I hope I don't need it for forever. I'm not against the idea. I mean, I can't be because I take insulin. And

Unknown Speaker 49:12
I

Josh 49:15
I don't know. I mean, I know I know. It wasn't like an immediate trauma. It's a it was built from my parents divorced and type one diabetes 100%. And just built up from that. And, you know, if I probably could have been diagnosed when I was in, in middle school, when I was telling my parents I hate life, I hate life. Like Like a moody teenager. So well.

Scott Benner 49:42
Let's do this and let's let's dip into your skills and and put ourselves in a time machine. What should young Josh have done different to not end up here? Do you have thoughts about that?

Josh 50:01
It's hard I mean, you know, your one thing that you do with therapy is all you can do is remind people what they have control of and don't have control of. Right? I don't, I did not have control of my parents divorcing, and I did not have control of getting type one diabetes, or the effects of type one diabetes. If my personality was more like my daughters, I might have been able to own diabetes a little bit better.

Unknown Speaker 50:34
If

Josh 50:41
If I had if I had sought out, you know, a therapy, like I'm, I had been doing pre COVID. To try to, to recognize where this stuff is coming from, and that it's not in my control. And sometimes we just have to deal with that. It's not in your control. earlier. That might have been it. But it's one of those things. I don't know if I would ever because there's a certain amount of just genetic, you know, blood makeup, you know, I'm just I'm that maybe I have a little bit less dopamine, or whatever it is, in there, that I'm just more susceptible to it. Yeah. I don't think there was anything that young Josh or even, you know, college, Josh, could have really done

Scott Benner 51:35
that. I don't know. Just that maybe just having someone to talk to to it mean, is it fair to call it like, letting the steam off? Like sometimes like, to keep you from getting to critical mass? Do you? Is that what the conversation does? For people sometimes?

Josh 51:53
Yeah, yeah. That's and we oftentimes we call that being a sounding board, you know, if you know, and, and sometimes, you know, that. That is all people need just to be heard, maybe they don't have someone at home to be heard. Or they have a topic that they can't bring up with their mom, or brother or sister or you know, loved one. And they just need to be heard. But then, you know, it's always that question of, okay. You can come in week to week and be heard, but what are we going to do about it? You know, can we do anything about it? Right? And if so, what are we going to do about it?

Scott Benner 52:32
Yeah, and for you, obviously, if diabetes was one of your stressors, I mean, the only thing you can really do about it didn't exist back then for you, right. And like just finding management ideas that didn't take up as much of your time didn't cause you to bounce around as much and feel that way and to be scared all the time. So you listened to the podcast is your management, like completely different than it was when you were younger? Have you had that?

Josh 52:58
Okay, yeah. So when my daughter, the one that was diagnosed, was about two, one or two.

Unknown Speaker 53:09
I

Josh 53:11
I had a seizure in the middle of night. Up until that point, I had never had an I never been hospitalized for being too high. I've never been hospitalized for being too low. I've never had any of those sorts of issues. And that, that hit me. I don't know what I honestly don't know what happened. And it was very, very scary. I was preparing myself for this. I was talking to my wife this past week. And I realized that what hurt the most I mean, it hurts to have a seizure. Especially if you bite your tongue and stuff like that. But what hurt the most, I just remember laying in the hospital bed in the ER, and just feeling a tremendous amount of shame that I didn't I didn't take care of my diabetes well enough that you know, it's this. I know, I know. We don't curse here, but it's that that Oh, moment where you you realize, okay, the the Reapers coming? And that's what hit me. I don't think I developed a sleeping issue after that. But I had trouble going to sleep. Sleep a long time after that go to sleep, right? Yeah. And lo and behold, out of that, out of that muck of crap. Comes the idea. Oh, what's this? What's a Dexcom g4 and this is where I'm going to really lay it all on my endocrinologist I'm not putting my endocrinologist on on your on your your Doc's list won't be

Scott Benner 54:55
on there won't be on the juicebox Doc's dot com page.

Josh 55:00
Is your your promo? Yeah, everybody go do that. I will I will mention some names of good people but my, my, my endocrinologist is not, but she's an adult endocrinologist I have asked her, she said that, no more than 5% of her caseload is type one diabetics. So she How is she supposed to know? Right? She never introduced the idea of a continuous glucose monitor to me, until I had this, you know, some other doctor, or my wife? Remember? She's the smart one. Yeah. And, and oh, crap, you know, so I got that. And I immediately went probably from I don't know, I don't know where I was at. I'm pretty sure it was like an eight or nine, down to under seven, and then kept on going. And since since that date, I haven't been like over 6.3. Well, and I was still doing MDI, by just with the Dexcom. Right. We have been being aggressive. And so the seizure changed my life in good and bad ways. I couldn't sleep, I was more anxious, I was more depressed. But I was also getting better. Yeah, I'm getting better care. And that happened again, with my daughter, that it tore my heart out. It broke my heart. And I realized that I hated diabetes. I knew I hated diabetes. But I wasn't I couldn't, I couldn't hate diabetes anymore. I can't go around. You know, and not that I did, you know, throwing my, you know, shots and saying shots or stupid or something like that. But I can't have that about diabetes anymore. Because I have to, I have to take care of her. And I have to let her be free. Which meant I had to be free of have that feeling.

Scott Benner 56:56
of loving, like, Oh, yeah, take her out of it. It's It feels like the diabetes and you are the same thing. Is that right?

Josh 57:06
Yeah, yeah. I mean, I am a diabetic. You know, there's, there's been a trend lately. Not lately, the past probably like 10 years of trying to push people to not be the diagnosis. So you're not a narcissist, you are a person that suffers from narcissism sort of thing. I chose that one specifically for you. I felt like that

Scott Benner 57:27
was aimed at me. But thank you.

Josh 57:31
I listened to a lot of your podcast and I have the power of diagnosing I don't believe you meet the diagnosis criteria,

Scott Benner 57:37
or Oh my god, finally. That's it. I'm using that that's um, that's going on the website. Not a narcissist. Please leave your credentials at the end of the episode.

Josh 57:49
But, uh, but yeah, that, you know, it's it's a you're not a schizophrenic. You're suffering from schizophrenia. I understand. Yeah. Yeah, that sort of thing. And so, but I'm 100%. I was, I will and not only was I a diabetic, I have been a bad diabetic.

Scott Benner 58:05
See, it's been it's been horrible. Go ahead. You said that at the beginning. And I thought, Boy, that's an older idea in diabetes, like I never hear parents have younger kids who are more newly diagnosed say, we're bad diabetics. It's always, it's always adults, who are of a certain age, who at some point, grew up with the idea that doing it right, whatever that meant, you know, with a needle and insulin and nothing else in no direction. And doing it wrong, man, I'm a good diabetic or a bad diabetic. And I hear some people say it with, like, real low thing. Like they screwed up. I hear some people say it with a lilt that tells me they know, it's ridiculous. And it's just something people say, but it really is prevalent in people with diabetes of a certain age to feel like they either did it good, or did it bad. And that's such a shame, you know?

Josh 59:03
Yeah, that hit me. Again, this past week, I've been listening along to the podcast longer this past week, but I've been going nonstop this past weekend. I had I had slowed down. But um, you had said to somebody, that it's just that age that between 30 and 40, just that age bracket something, something in there and the care for diabetes just was was

Unknown Speaker 59:30
what

Josh 59:30
I mean, but at the same time, you know, for the generation that boiled their pee. I don't know if you're hearing that. You know, when you had Dr. ponder on your he didn't say that, you know, maybe he's maybe he's a great diabetic, we all know he is. But

Scott Benner 59:47
no, just if you're if you're it's that there's a middle ground like you're saying if you're older than that, like whatever that range ends up being. I've never done a study. I don't exactly know where it is. But if you go into that generation prior, right, who was had nothing, then, you know, regular an MPH and like 30 minutes before probably seemed like a dream to them. And so their perspectives just different. Yours is, you know, listen, I mean, obviously you can't make people feel any way, if you could everybody be happy because somebody with better perspective than you could just point out, you know what's up and you'd be like, Oh, great, that's perfect, I'll just start feeling like that. Now, obviously it doesn't work like that. But if I step back from your story here for a second, what I hear is, for all the, you know, miles, the crap that you use slog through, what you end up on the other side with is the exact right education to make sure that nothing like that ever happens to your daughter. And I feel like that's what parenting sort of is anyway, except, you know, except we don't see it as much, you know, here's another way to think of it, a person grows up with terrible parents. And it either overwhelms them, right? Or they learn from it, it usually ends up being what it is, even the people who learn from it, are still kind of, you know, messed up in their own special way. But they have a perspective that tells them, I don't want to do those things. That's how we, that's how society continues to gradually get better, you know, and it happens so slowly, you can't even see it in your lifetime. Sometimes. It's just, it's happening, it feels like autopilot. And if it wasn't diabetes, it would be something else. Like if you didn't have diabetes, and your daughter didn't have diabetes, there'd still be something from your past that you've learned from it just wouldn't be so front and center in your mind. And she'd come through the room and say something and you'd say, Oh, no, no, no, and kind of, you know, course corrector. Based on this knowledge you have from the past, that would be burned into you, but not, you know, not on the tip of your tongue constantly, just with diabetes, it's always on the tip of your tongue because you keep living it. It's it's Groundhog Day, right? Like it just won't stop happening. So it's more out in the front. I don't think it's any different though. So somewhere in there is your ability or inability to not wallow in it. And I don't mean wallow in pity, but that's the only word that pops into my head.

Josh 1:02:15
Well, while is a really good word, because I was gonna say, you know, in that age bracket, we're talking about, you know, 90s kids, and we all listen to Nirvana. So it's Nirvana's fault. You know, that would that were wallowing? But when, when, okay, so when my daughter was diagnosed, from that point, in the next, you know, two to four weeks, I learned so much more about diabetes than I ever knew. In the previous 25 years. It's insane. I, we went to, so this is where the good endos come in to our children's hospital. And not that I knew the name yet at that point, But lo and behold, it's Dr. ponders team. And so our, our endocrinologist, Dr. Stevens is amazing. And one of the nurses there, his name is Brandt is amazing. She's absolutely amazing. To the point of like, I, you know, I gave her a couple of shots in the hospital, you know, for her and stuff like that. No, I guess is maybe the day after, but it was hurting her a little bit. Not that she didn't, you know, I mean, your shots and she's six. Yeah. So when, when we went to him, you know, his, his attitude is just so positive. He was able to teach, teach on us, but also teach mainly just teach her that look, I can do a painless shot. And he did it and she didn't feel a thing. And hey, it can be painless. She taught us never to call this a good blood sugar or a bad blood sugar. It doesn't have a moral standing in life. It's just that high blood sugar, low blood sugar. And, and all those things weren't there. I don't feel like you know, when I when I was going to Texas Children's and because my hemoglobin agency was a certain height I had to stay and talk to the dietician, and yada yada yada. So it's, it's been amazingly different in getting and being and being able to let her have the freedom. Like with that Dexcom my wife and I, based on what you talked about with Arden and not restricting food, we don't restrict any food. Now we're not letting her just have Skittles every single meal, right? Because we weren't doing that anyway. But there's no there's no food restrictions. Yeah,

Scott Benner 1:04:59
not I think that's a big deal. I just looked at ardens a one C for the last 90 days. Because I wanted to echo what you said, when I let go of the idea. Not good or bad blood sugars, I don't think I ever felt about them that way. I think I felt about them like, you know, okay, we need insulin, she doesn't need insulin, like that kind of feeling. It's high, it's low, it needs carbs. Like I always thought of it as reactive like that. But still, when I let go of the idea that Arden's blood sugar was going to be 85 all the time was a big deal for me. And it didn't lead to her a one c being any higher, or, or, you know, any better or worse. It was it was just my, my crap in my head, right? Like the jumble that would pop up into my head when I saw it. Like the difference between being like, Oh, she's 160, she started to head up, we probably didn't Pre-Bolus in time, or this wasn't enough insert or whatever it ends up being, we'll just do the thing that makes sense to do now and move on. I'm not saying I want to be clear that I'm not saying that, you know, I see Arden's blood sugar at 300, and disco, whatever, you know, like, I'm not talking about that, I'm just talking about the like, not beating yourself up over it part. Like that part. That was very freeing for me. And I did, I did it for a number of years. Before you guys knew me, but it was, um, it was not beneficial. And it wasn't helping anything. Like I think it feels like it's helpful. Like, like, I'll punish myself over this maybe so that it doesn't happen again. But that's not how it works. So you know, you can't tie a blood sugar to personal punishment, it just doesn't. They're not connected to each other, it doesn't make any sense, you know.

Josh 1:06:47
And that's something that I had to learn,

Unknown Speaker 1:06:50
you know, worse.

Josh 1:06:52
And I don't I still don't know if I, if I've learned 100% like not tying my like, if I'm having a rollercoaster day. And it's because I'm, you know, doing something wrong. I'm, I'm usually bringing that out myself. But luckily, I feel like we haven't had any of that sort of stuff with with my daughter. At the very beginning. My wife looked to me to be some sort of expert on diabetes. I'm like, I don't know anything.

Scott Benner 1:07:28
Paying attention. Barely,

Josh 1:07:29
I could barely take care of myself. I don't I don't care. Yeah, like, so we, you know, we've we've learned together how to take care of her. And I mean, and, and honestly, now it's I think it's it's probably more her. I know that I at one point, I remember you saying that. It's it seems like it's better when it had when there's one person in charge of the care of a child. But really, it's, it's probably like, 55% 45%. me. And and we she was a she was 7.6 when she was diagnosed with diabetes, which I don't think is that bad? No, in the grand scheme of diagnosis. And then she is her last one, which would have been, you know, November to July was 5.0 G. So we I say we, I caught it. I caught it really early. Right? And we've been I've been amazingly thankful. They kept us overnight one night. Technically, they said she went into DK but she wasn't ever that bad. When we got out and went over to the windows office, they said, Oh, man, you should have just come You should have just called us and come in, we could have gotten that blood sugar under control and wouldn't have to do any of that hospital stuff. Right? Like, we didn't know that we didn't know who you were, you know, so I'm pretty, I'm pretty thankful for for my ability to to catch that. That was that was something that I you know, I when I when I'm crafting something for the house, or whatever, I see all the flaws that I did, but that I have been able to to get that. That joy out of being able to catch that before you

Scott Benner 1:09:27
know, I made a big deal. And you've obviously helped her and her launch and Oh, this is so much better because of it. plus all the things that dangerously could have happened if it would have just gone unseen too long. I genuinely believe Arden was just a couple of maybe a day or two away from going into a coma. We didn't like we just kept staring at her like idiots, you know, just Wow, she looks really sick. You know?

Josh 1:09:49
Yeah. And and see I don't really I don't think I would have. She was too Right. Yeah. I don't think I would have been able to. I mean, I wouldn't have known what symptoms look like for them. You know, where, you know, same age, right? And same symptoms, at least similar symptoms. So

Scott Benner 1:10:07
I just don't, I just don't hold on to things like that the way other people do. And it really this conversation has made me think that, not that I don't think I didn't realize this before, I just never kind of put it into words in my own mind. But the amalgam of who you are, how you grow up, what your brain chemistry is, the things that have happened to you or not happened to you, you know, they all are going to inform your reaction to something later. And me feeling like, I did my best. And I don't hold any weird feelings about not figuring it out sooner, is probably a lot less about me, like the conscious person you're talking to, and a lot more about however, I got built over the years. And just the same as I think your reaction is probably as much to do about that, as it is about anything else to the things that happened to you, and how they intersected with, you know, your physical, your physiology and, and everything else. It's just, you know, I think that anybody who would look, I think anybody would look at somebody who's having anxiety or depression or worse, and think I'm better than they are. You don't realize that's you don't realize it's just you're just lucky, just dumb luck that that didn't happen to you. You're not. You're not broken. And I'm not. You know what I mean, there's something that could happen to me tomorrow, that would run me over that you'd probably skip right through, we just haven't found that thing yet. I don't know. I just think it's important not to feel that way about other people. And I know it's crazy to say it like this, but like I saw Kanye West say something yesterday. And your first thought is, there's something wrong with that guy. You know what I mean? Like, but I don't feel like I don't, I would never say like, He's nuts. Ignore him, I would say, I think there's something he needs that he doesn't have, you know, and, to me, that seems it's horrible, you know, that somebody can't help him, or that he, I don't know, I don't know what it is. But I would never look at him and just judge him as somehow inferior to other people. He's, you know, he's been through stuff that I haven't been through. And, you know, and so on, and so forth. I just think, like, I when I'm talking today, I just feel like, you never know, man, like if there could have been four other different terms in your life. And you might feel differently, and who's to say that those terms aren't going to get made better moving forward, and you're not going to get to feel differently in the future. Because you've been, I mean, we've been talking for over an hour, you've been upset for 15 minutes of it at the very least, like like, once it hits you like it hasn't gone away, you know. And, and that's a tough way to, that's a tough way to have to live day to day, especially because, and, gosh, Josh, I am so sorry. But we said we were gonna say this, but your youngest has markers for type one as well, right? Now my oldest your oldest does. So the nine year old looks like it's about to happen for them as well.

Josh 1:13:13
So a couple weeks after my middle was diagnosed, we were around the dinner table. Just having fun with you know, a blood sugar meter as you do. And, and he wanted to test his blood sugar to see how it fell. And so he tested blood sugar and I I looked at it, and I turned it and showed my wife, you know, with my bug eyes and and, and he was 264. Yeah, we just had dinner is 264. And she just looks at me, and

Unknown Speaker 1:13:47
that

Josh 1:13:50
I had not experienced the feeling of hope. Just dividing itself for myself. Hmm, that didn't make sense. Hope Jessie leaving me. Oh, as much as I did

Scott Benner 1:14:02
it, Josh. That happened to me that day. Yeah, yeah, I've had that.

Josh 1:14:07
And, and it leaves me speechless at the moment. And so we we dipped him in alcohol, and made sure it was all

Scott Benner 1:14:20
stuck to him anywhere. Yeah,

Josh 1:14:22
we because he was actually squeezing strawberries. for some weird reason. You're

Scott Benner 1:14:28
like, maybe that's it? Yeah,

Josh 1:14:29
maybe that's it. And so we tested it again. And he was still high.

Unknown Speaker 1:14:36
What did you tell him?

Josh 1:14:40
I don't know. I don't know if we really said anything. At that point. We may have said, Well, your blood sugar's a little high. But then we left the room and started bawling.

Unknown Speaker 1:14:49
Yeah.

Josh 1:14:50
So you know, it's one of those things where like, I knew I knew a little bit of what to do with my middle but I This point I was, I was beyond action. I could not. I was just I was I was a puddle. And luckily my wife, she. I think at this point, we were at a messaging basis. No, wait, no. We called we called the the windows office. And they said, Okay, we'll bring him bring him in tomorrow morning, we'll do a hemoglobin agency and check his blood sugar then. So we did. There wasn't much sleep that night. I wanted, I wanted to check his blood sugar and other six times while he was asleep, but I didn't. And I remember there, the moment we were in the waiting room, and the nurse Brandt came out, he looked at me. And because unlike this with, with with everybody, so he knows I'm like, Oh, just at this moment of just about to cry, and he looks at me like, he feels my pain. And he just but he was what he says was why the heck did you check his blood sugar? You know, that's gonna lead to trouble. But like we heard, we were playing around now. So we we checked his blood sugar there and did his hemoglobin a one C. And he had his blood sugar was like 100. And I think is a once he was like 5.2 or something. It wasn't, it wasn't bad. So we were like, okay, we took one of her the doctor, we took one of the lead rays extra lead rays that we had, and put it on them. No, they gave us one of the professional ones so that it just came out of all the data. So that we didn't have to fret for two weeks. gave it to them. They went over the results, we saw the results. Okay, this, I mean, I was looking at this doesn't look that bad. But Dr. Stevens was like, man, I just, there's just something about these numbers that I'm not 100% comfortable with. So he ordered the antibody test, got the antibody test back, and he was positive for three or four of the five antibodies.

Scott Benner 1:17:11
So it's a matter of time, possibly, before it happens.

Josh 1:17:17
I'm pretty sure that because they've all said that. It's not impossible, it's a win, because his antibodies are attacking his insulin, like the insulin that's in there. And one of the other ones that like just in a combination, it's it's gonna happen. I remember that phone conversation, we were outside. And I'm just listening, because my wife is the one doing the talking. And, you know, it's just another just, I, I could not understand what was going on and, and why my wife stayed with me and married me in the first place when I mean,

Scott Benner 1:18:04
I I think that there are a lot of people who think they know how that feels. And and it's I know, I feel like I understand what you're talking about. And it's a it's me numbs the wrong word, it feels like there's nothing positive that exists in the universe. And it's all gone. And it feels like it disappears in a split second, it's very powerful. But I think the good news is that, you know, if that's not really the truth, it's not what this ends up being is not what you were hoping for. But not, I mean, you hear people on here, right? All the time, we're living terrific lives, and they're not going to be any different than your kids and they don't have to be any different than you honestly. So it's a it's, I often wonder about, I sometimes think I'm gonna have a grief counselor on the show one day to talk about the connection between being diagnosed with something that's incurable and how how people respond to death yet, because I think they, they appear to just match up to me, you know what I mean? And so, I mean, man, listen, it appears to me that you were fighting with something for a very long time that you've just started to address for yourself, and then you have this diagnosis, and then another diagnosis or, you know, upcoming diagnosis, it feels like I can't tell that's worse. If he would just have it today. Or if you get to think about it, I'm not sure what's worse that your psyche that

Josh 1:19:36
goes back that goes back to that argument of should you have like your kids tested? Yeah. Or you know, and do those antibody tests.

Scott Benner 1:19:45
Do you want to know the day you die? If I could tell you the day you were gonna want to know right, and the answers gotta be, I think No,

Josh 1:19:53
I think well, with the dying one. Definitely. Yeah,

Scott Benner 1:19:55
it was like next week and then I wouldn't some some really stupid things I'd like to do for a couple of days. Because I've been pretty, I've been pretty good to this world. So I'd like to

Unknown Speaker 1:20:07
I'd like to Louie got to get

Josh 1:20:08
on those podcast files set up for

Scott Benner 1:20:10
my hosting, I'd have to get all the editing, I'd spent the last week of my life editing, show editing, getting them ready to go out for you guys.

Josh 1:20:17
But you would have a lot of a lot of people in there you know, for your for your funeral listening, all the other listeners would come in and

Scott Benner 1:20:25
the show would finally be as big as I want it to be because people like you, you're not the guy that died. But first he set up six months of his podcast to go online. Great, this

Josh 1:20:35
is it. This is a grim grim

Scott Benner 1:20:38
we just went right down into my head room is like all that. I wouldn't know.

Josh 1:20:42
That's what most of the time things are. It's not like so Dolly Parton. She has a she has years and years of music that she has recorded.

Scott Benner 1:20:53
Huge boobs. I did not know where that was going to say about Dolly Parton. She has

Josh 1:21:03
saved up okay. I can't even go with that. But yeah. So yes. And so she's gonna probably get even more popular in my Korean moratorium, whatever it is.

Scott Benner 1:21:20
Well, you use the wrong word. But now you used it. Sadly. I can't think of the word. That's right. I will think of it later. that'll probably be the name of the podcast. Speak boobs. Yeah, no, no, I was gonna say something else. But nevermind. phones. We got it. Listen, man, I, I have to say that I can envision an absolutely delightful future for you that I think is already beginning to happen. But I don't know if I can talk you into believing it exists or not.

Josh 1:21:57
I have to. I've never been a good. Like just sitting in a classroom listening learner. I need to try it out. I need to do with my hands. I am I'm trying to build a bass guitar. And so I'm practicing on another piece of wood to try and make sure I figure out how I can do what I want to do. You know? I have to I have to experience and learn. And I think I think that process has started. I think I thank you and the podcast for helping me with that. Because a lot of it like I had said before is the community. I there was a time I went for a work conference e learning thing to Dallas, and the hotel clerk. I recognized a Dexcom or something that Oh, you're a type one diabetic. At that point. I want to say that was probably the first type one diabetic. I had talked to him maybe five years

Scott Benner 1:23:03
knowingly right? Yeah. Yeah.

Josh 1:23:06
I to me, we were always, you know, silent. And there was, you know, there was nobody, but then, you know, the podcast, you're bringing people on? I'm hearing their stories, which I absolutely love, you know, because I'm a counselor. I'm getting on. I don't do Facebook, but I look at you know, your group, and then the loop group, so I loop and, and all that sort of stuff. And yeah, that community has really made me realize that okay, there's more, and, and though my son's personality is probably not going to be as good as my daughter's personality about it. He will.

Scott Benner 1:23:48
He'll, he'll be all right. Well, he's got every opportunity, I think and that's kind of all you can hope for at this point is that, you know, that the options are all positive. And that the idea of will be vetted by you. And then by somebody smarter your wife, and then and then

Josh 1:24:07
it and more beautiful. Well, I didn't

Scott Benner 1:24:09
want to say but it but it um it's all right there. Now if and, and he he's not going to be well, he shouldn't be burdened with the experiences that you are right like he doesn't have a sibling who passed he That's tough. Like whether you think of that or not if that had to have been very hard on you growing up had to be hard on your mom in ways that probably rebounded around the house you wouldn't even be able to see as a child. And then you know, everything else that comes with having Type One Diabetes at that time, having someone say to you, why don't you go die diabetes, cuz, you know, let's hope that kid stubs his toe as an adult. You know that that kind of stuff isn't going to happen in your house. And so you just have to traverse the other 5000 things about having diabetes that everybody else has to get through. But I had a list of all ology that's ever existed in the world, you know,

Josh 1:25:12
a list of all this stuff of like, Oh, yeah, like, and you've talked about endocrinologist and how that's been and I can I can talk about, you know, our school experience. And and how that's been. But, yeah, you're right, that, you know, at least my personal journey, I have to not equate their experience with my experience. Yeah, it's gonna be it's going to be different. And with my son, specifically, you know, he has not watched my daughter suffer at all. In fact, my daughter probably gets, you know, three times as much candy as she used to. We're not a juicebox family. We're a Skittles. Skittles have a couple. So let's see. Let's see. I don't know what the not the generic name for Skittles would be but you know, that's, that's what we are.

Scott Benner 1:26:01
You have generic Skittles?

Josh 1:26:03
No, I'm just thinking like, if you wanted to, if you wanted to name the podcast that

Unknown Speaker 1:26:07
oh, you know,

Josh 1:26:08
rather, rather than getting in a trademark or copyright thing, you know?

Scott Benner 1:26:13
Maybe I'll just call this one taste the rainbow. Who knows? Taste

Josh 1:26:15
the rainbow. So yeah, we love Skittles in this house.

Scott Benner 1:26:19
I was leaning towards Josh has all the fields. But we'll see.

Josh 1:26:25
That's very. Um, yeah. So yeah, it's I I have never not had insurance. That's one of those things like it's it's has put a lot of responsibility on me in good ways. Yeah. And currently, I have excellent insurance that will cover us will help us. Yeah. You're right. The future is in front of us in. Yeah, sure. All

Scott Benner 1:27:00
you got to do is calm down. You'll be okay.

Josh 1:27:02
Yeah. And that is the dog that I did not step on. Well, please. We actually, yeah, we actually we got through the help of, of donors and a GoFundMe. She's a diabetic alert dog. Wow. And, like, we're just trying to cover all of our bases. So I started with the Omni pod after listening to you guys and also that nurse Brandt. Because I thought okay, maybe my daughter would like to have the Omni pod. We would like her to have the Omni pod. So I'm going to start doing it. And so as soon as I decided, Okay, I'm gonna start doing the Omni pod. My, my, my wife, the smart one. She looked up and saw this thing called loop. I'm like, Okay, so, yeah, I jumped. I mean, I think I did the Omni pod, you know, normal experience for like, two weeks. And then I started looping. Okay. And then here comes your podcast again, to be able to kind of help me with that non advice way of course, but how was that? And and then Ginny, you know, I signed up for integrated diabetes service and, and went and I did not ever get to meet Jenny. Because COVID happened and moving happened and my my subscription ran out, but I got help setting up the loop and getting that going. And it just keeps moving forward. And

Unknown Speaker 1:28:40
this

Josh 1:28:42
I remember recently that you had someone on just talking about how the all the medical things with with diabetes that are happening. Like there's no it doesn't feel like there's any other field that is moving so fast.

Scott Benner 1:28:54
I agree. I think and I think that it's um, it's building on itself to it just feels like it's it's gaining a momentum that I just never thought would happen like I say all the time. And I really do mean this there was a long period of time while Arden had type one as a younger person, obviously for people who have had it longer than her were just you know, accompany coming out and being like, Look, we made a new meter. Is it any better? No, but it's new like that wasn't advancement like look, we changed it aren't that look, the numbers are easier to read, like like that kind of stuff was was a leap at points and now we all stand around going well, when's the Dexcom g7 coming out? Like you know, yeah, and the middle that comes out you're gonna be like, Is there gonna be a ga like you'll say it immediately you know, and then you'll say no, Russia got kicked out of the g8 is g7 now, which will be a bad joke that I will tell at some point. But it just it is it's, it's moving at the fastest it ever has. And and I really do I agree with you that algorithm pumping for Those who can get it and want it is going to be a it's gonna be a big deal your son may never know, diabetes, even even a sliver of the way you knew it as a kid, you know? So it's really good. It's excellent. You're you're in a good spot. You just don't know it yet.

Josh 1:30:17
Yeah, I was put on this earth to, to raise diabetics.

Scott Benner 1:30:23
I wish I knew I was here.

Unknown Speaker 1:30:27
But you were

Josh 1:30:28
here, you were here to disseminate information, and in comfort to those that can find the podcast. Oh,

Scott Benner 1:30:40
Jesus, as soon as I said that, Josh, I was like, it's gonna seem like I was fishing for a compliment. But I really don't, I really meant I don't feel like, Man, that real purpose,

Josh 1:30:48
let me check the DSM within narcissism.

Scott Benner 1:30:53
As soon as I said it, there was a voice in my head. That went, don't say that, because it's gonna feel like you said that it will say something nice. But I didn't just pop that in my head. I just I don't know how other people feel like during during their days, but I I genuinely, almost always feel like I should be doing more than I am. It just it's, I don't I don't know what, you know, what broke in my life, coupled with how I'm wired, that leads me to that feeling. Because I think if I step back, and look, I think I'm doing a lot for people who I don't even know, which is already, I think more than what a lot of people are able to accomplish. And so that should feel good. My kids are healthy and doing well and keeping it home for them. And all those other things. I feel like I I feel like if I quantified myself on paper, I'd think oh, that guy is doing okay, you know, but there are still times when I'm standing somewhere thinking like I could get another episode of that show out. Or I really do want to have a doctor on to talk about intermittent fasting. And I if I there was more time I could I could nail this one guy down that I want to have on and get him on. But I just I can't do everything, obviously. And the podcasts can't just be on constantly. And so I don't know, I don't know if that feeling of I'm not doing enough really just means I feel like there's more to do. And then maybe I'm making it about myself, instead of making it about what's left to do. I'm not sure but you know,

Josh 1:32:26
well, if I was If I was your therapist, I would say that a lot of times people base their their worth on their productivity, okay. And sometimes, if we're not that, it seems like you're feeling down or anything like that. But we always are wanting to push our productivity so that we can push feeling better. You know, and so being able to just step back for a second and look, you know, at what you've created or what you've done, practicing that mindfulness is always a good thing. You know, it's not going to take away that feeling of, I want to do more, I want to do more, because that's it's good that you want to do more. But I'm realizing No, well, I have done I have done a lot.

Scott Benner 1:33:14
Yeah. I'll tell you where you see it, where I see it the most of that idea of like, it's not where it's not enough, is with. So you know, you measure a podcast by downloads its streams or downloads or whatever you want to call it. It's people's ears hearing episodes, right? And then you measure it by how far into that episode, they listen. But those are pretty much the two ways, you know if you're doing okay, and there was my wife was joking with me the other day. And she said, Do you remember when you told me? If you can just get the podcast to 15,000 downloads, you'll know it's moving in the right direction? And I said yes, I do remember saying that. And she's like she was how many downloads Did you have this month? And I said 115,000. Like I at one point was talking about the entirety of the show, like just making it to 15,000. And now this is the reality. And I look up and I see that it's about to hit 2 million total downloads. And I my first thought is

Josh 1:34:17
he just hit 1 million.

Scott Benner 1:34:19
Yeah, yeah, I got the 2 million pretty quick after one. Yeah. So So I see the 2 million in what you what and what I should think is what you just thought like, wow, I hit a million. And I got to 2 million, much more quickly than I got the 1 million This is going in the right direction. And it is and I know that academically but when I see the 2 million number approaching, I think I wonder how much more quickly I could get the 3 million that I got the 2 million for one, like it's just that weird feeling of like, how do I do this better, stronger, faster, quicker, like go go go and and I am a little competitive to

Josh 1:34:53
not say we are competitive. We're a competitive race. Generally. We're always trying to be Push and, and do better than our than the people that are copying you.

Scott Benner 1:35:05
There. There are times when I'm Loki astonished that I'm able to keep my concern for people living with diabetes in second place, or in first place, excuse me in front of my feeling of wanting to win it because they feel like two things that they feel in congruence completely like the idea like, I want to have a great podcast. And I want it to be listened to by as many people as possible. And I and and that kind of thing. And I just really would like people to feel better. Like and just be healthier and meet people, like you said, You never met anybody without the diabetes for it does that for some people. And so I really do feel that way. I love what the podcast is all the good parts about it. But they also have debt, it also has downloads and I'm like more more more. Like it's weird to try to keep those two things. Separate, I do see them as separate. But I don't ever want them to bleed on to each other. Like I don't ever want the idea of making the podcast popular to be more important than the podcast actually being popular for a good reason. I guess.

Josh 1:36:10
It's like a few minutes ago, you had said, I really want to get on Dr. Oz to talk about intermittent fasting. I can't think of a popular doctor and I hate dr. oz. So yeah,

Scott Benner 1:36:23
if I said that I know there's something wrong with me.

Josh 1:36:25
Right. But if you had said I can't get it, I want to really, I really want to get this famous person because they have type one diabetes. Rather, you said, I want to get the information about intermittent fasting out to people, right? Yeah, that's a difference.

Scott Benner 1:36:40
My whole marketing plan around this podcast is that somebody listens to it and gets enough out of it to tell somebody else about it. That's the entirety of my plan for getting bigger. So I just think that trying to plan for anything else is silly, because that it's not it's false, right? Because even if you can drag people in, they're not going to stay. Like if it was boring, or banal, or just any in any way not listenable. Then you'd get them there. You'd go to all this work to drag them in, and then they'd listen and go, I don't want to listen to this, and then they'd be gone. You know. So, to me, if it helps people it's self sustains. That's how I think of it. So anyway,

Josh 1:37:21
does that make you feel

Scott Benner 1:37:24
a little hungry? Actually, because we've eat we've talked into the first hour of my intermittent fasting schedule today. And somebody downstairs is cooking, and all I can smell is food. And then my brain goes, you only have seven hours left. And this is a good conversation with Josh, so don't stop talking to him. So there we go. Yeah, we're gonna have to stop Josh so I can eat.

Josh 1:37:45
Okay. Happy Birthday Arden.

Scott Benner 1:37:47
Oh, I will tell her thank you and listen on a complete off note, I just have to ask you before you go. And thanks so much for coming on and doing this. You were incredibly honest and open. And I really appreciate that. But what kind of headset is that? Because it sounds terrific.

Josh 1:38:03
It? Well, it's one that the VA gave me It's from work. It's a Jabra.

Scott Benner 1:38:09
I see that. Okay, so

Josh 1:38:10
Java is a band, a brand that's out there, I can tell you it's bi z biz. 2400. And then there's like a, like a 202. Roman numeral two, almost. Okay. And it just it plugs into the USB. It's like it's plug and play. Yeah, it has this that I can you know, mute and whatnot. And

Scott Benner 1:38:33
yeah, Jenny, you were about to get a new headset in the male sounds terrific. So it was so good.

Josh 1:38:41
I was thinking I because I have you know, like earbuds or you know, to plug in a mic. Okay, I'm gonna I'm gonna get this thing working on my personal computer, because it was working. So

Scott Benner 1:38:51
it's terrific. It really is good. Yeah, sometimes I send Jenny technical gifts and she then calls me and says how do I hook this up? Because she's delightful.

Josh 1:39:01
This one should be easy.

Scott Benner 1:39:02
So kidding. All right. Well, listen man, the best to you and your kids and your family and that poor dog which obviously can't live much longer the way it's being stepped on. And, and just I really do appreciate you doing this and Oh, look, that's a beautiful animal. Look at that.

Unknown Speaker 1:39:18
Oh, time to stretch. Lovely.

Unknown Speaker 1:39:20
What kind of dog is that?

Josh 1:39:21
She is a burner doodle half. Well, actually a quarter bernese Mountain dog and three quarters poodle?

Scott Benner 1:39:28
Yeah, I burned snickerdoodles once. But I just I think I'd the oven too hot to be perfectly honest. Learn to doodle I've never heard of before. I'll check that out, too. All right, Josh. I'm gonna go downstairs and eat something before my stomach attacks my brain. All right. I thank you so much for doing this. I really do appreciate it.

Unknown Speaker 1:39:45
Have a good day.

Scott Benner 1:39:51
A huge thank you to one of today's sponsors. g Vogue glucagon. Find out more about chivo Kibo pen at G Vogue glucagon.com forward slash juicebox you spell that GVOKEGL Uc ag o n.com. forward slash juicebox. And to learn more about the Contour Next One blood glucose meter, please go to Contour Next one.com forward slash juicebox. There are links in your show notes and links at Juicebox Podcast COMM And as soon as this music stops, I'll fill you in on what's been happening with Josh.

Okay, Josh wrote me just the other day. I'm sorry, I'm not on the microphone. Josh wrote me just the other day, and said, since we spoken in July, a few things have happened. In November, his daughter hit a one year anniversary with type one. And on December 7, they officially diagnosed his son with Type One Diabetes. He says now there are three of us in the house. He did not have to be hospitalized, which was great. And he was quickly put on tresiba. And then in a few days, they allowed them to start using novolog to get him off the roller coaster, but that he's adapted very differently than his daughter has. And I've sent Josh an email back and invited him to come back on the show in six months or so. And tell me about that. I just like to say Josh, that my thoughts and my family's thoughts are with you and your family. And I'm sure everybody listening has you on their mind in their heart today.

#434 Splitting Long Acting Insulin

January 29, 2021Scott Benner

Jenny Smith in the house!

Jenny and Scott talk about the possibility of splitting basal insulin for type 1 diabetics using multiple daily injections.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to Episode 434 of the Juicebox Podcast. Today's show is with Jenny Smith, Jenny and I are going to talk about long acting insulin for those of you who are on MDI. So insulins like love Amir lantis, tresiba, stuff like that long acting, which Jenny corrects me about because I want to call it slow acting. But Jenny is older, and she's had diabetes for a long time, so she remembers insulin, it was slow acting. Anyway, let's get started.

My friend Jennifer Smith holds a bachelor's degree in human nutrition and biology from the University of Wisconsin. She's a registered and licensed dietitian, a certified diabetes educator and a certified trainer on most makes and models of insulin pumps, and continuous glucose monitoring system. systems. I didn't say the Ask the first time and most just pretend like but and continuous glucose monitoring systems. She's on the show today, to help me talk about long acting insulin for people were using multiple daily injections. Now if you're pumping, we still, we talk a little bit about the ideas of how basal insulin works and how to create coverage for different things. So I don't think the conversation wouldn't be valuable for you. But this one was definitely done with people who are injecting in mind. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. Now after all this, if you'd like to contact Jenny, you can find her at her real job at integrated diabetes.com.

I'd like it if you could consider supporting the good work that's being done by the T one D exchange, your participation will take just a few minutes. But the impact of your kindness will last forever. Because the T one D exchange is looking for type one adults and caregivers who are us residents to participate in a quick survey that can be completed in just a few moments right from your home, on your phone or your computer. And after you finish the questions which are very simple, I think it took me maybe six or seven minutes to do them. You'll be contacted annually after that just to see if there's any updates to your information. But other than that, there's nothing left for you to do. And this is 100% anonymous, completely HIPAA compliant. And it never requires you to have to see a doctor or go to a remote site. But it does allow you to help with the research being done around type one diabetes. The T one D exchange is building the most robust Type One Diabetes data platform in the United States. And it's using it to drive meaningful research and innovation in treatment prevention and hopefully one day a cure. With their partners, they work to increase patient access for care resources, to promote education, and advocacy for policies that help the Type One Diabetes community, these things lead to better, longer lives. For everyone living with Type One Diabetes. If you can take the time to do it, please visit them at T one d exchange.org. forward slash juice box. Thank you very much. Jenny, I want to talk about slow acting insulins for people using MDI. Because I always tell people that the difference, the main difference between pumping and not pumping is well, if you're pumping, you don't have to inject yourself a bunch. And if you're pumping, you have access to extended Bolus features and manipulating your basal insulin from turning it off to temporarily putting it up or down. And to me, those are the real differences between pumping and MDI. I don't see a bunch of others,

Jennifer Smith, CDE 3:56
the dose two from the standpoint right? I mean, in terms of especially a little little are really sensitive, if all you can do on MDI is half a unit. Or if you've got really good eyeballs, and on those half unit syringes, you can get a quarter of a unit which I can can be done if you but it's again, it's not exactly right. But I mean, if you're somebody that can take point 05 or point one, and it turns things around for you, then MDI is not going to ever allow that

Scott Benner 4:30
right. And then thinking specifically about being an MDI patient and your slow acting insulin. So let's list them because I'm not I can do the old ones Lantus. levemir. I know tresiba because people seem to love that but there's another one right?

Jennifer Smith, CDE 4:46
Oh, so not so. You mean long acting?

Scott Benner 4:49
Yes. I call it slow acting. You call it long acting?

Jennifer Smith, CDE 4:52
Yeah, it's long acting. And yeah, there. You're right. There's Lantus is old left Amir to jail

Unknown Speaker 5:03
to jail was the one I couldn't see. But

Jennifer Smith, CDE 5:06
then there's also you know, Basil glar, essentially, which is like Lantus.

Scott Benner 5:11
Okay. They changed that they changed. Okay.

Jennifer Smith, CDE 5:14
Yeah. So those are the those are the main, long acting sort of 24, what they call 24 hour acting.

Scott Benner 5:22
And if I put you in charge of the world, and you had to give people long acting insulin, which brand would you give them?

Unknown Speaker 5:29
Oh,

Scott Benner 5:31
you should have saw the pressure on your face when you were given free rein over the world just now. You're like,

Jennifer Smith, CDE 5:36
Yes, it was. Like being told that I get to be like, controller of everything. Yeah. Just insulin. That's that's not as fun. But I think that there are there are two, I wouldn't really only just pick one. I had to only pick one. I'd probably picked receba. Okay, honestly, second line, I would still go with the age old lantis. Okay, I really would. And I think that lantis to Jao probably would be kind of like, right with each other. And this is from both like this, his professional opinion in terms of what I've seen with all the people that I've worked with. And then really, fourth in line would really be more like 11 year. Okay. So I mean, by no means am I saying if you're on the level of your and it's working for you, that's bad or whatever, again, you're a diabetes. Is that what works? Well, it

Scott Benner 6:33
works works. That's no trouble at all. Yeah, what I started to run into this is going back a long time, this is this is Time Machine going back. Arden's using. They started on Lantus. It burned her we moved her to 11 year lever mirror didn't burn, we were all good. A little while in dardennes diabetes, I started seeing what I thought it's funny now because people have glucose monitors. They're like, yeah, it's so obvious, but it wasn't obvious back then, when I had a freestyle meter, it looked like it came out of a bubblegum machine and a bunch of needles, you know. And, and so I started thinking, I'm seeing Arden back then I thought of it as being insulin resistant. But her blood sugar's going up about 18 hours after I would inject her level mirror, right. And so I start, I'm online trying to figure it out. And again, for people nowadays, online back then was not the same thing online now is, and I come across Jenny, I don't I've never told you this. I know I haven't cuz I've never said this on podcast, I came across a web forum that should have been password protected. That wasn't where a where pharmaceutical sales people talk to each other. Okay, so there's a bunch of farmers A long time ago, this was a long time ago, I found this web board where pharmaceutical sales people talk to each other. And I found a thread where they were lamenting that the slow acting insulin that they were selling doesn't always last 24 hours, the way the label says it does.

Jennifer Smith, CDE 8:03
Say that, for that particular long acting. It's probably at least 90 if not more percent of people cannot use it once a day,

Scott Benner 8:15
once a day. And so that was a light bulb for me. And I was like, Okay, well, then what do you mean like so now I'm sitting there by myself. I don't have a podcast, I listened to her anything like that. I'm not reading anybody's blog. And I'm like, What do I do if it doesn't last 18 hours. And then I was like, What if I give her some of it? Every 12 hours. And that's the first time I split. Arden's love a mirror. I couldn't get a doctor to tell me to do it. I couldn't get anybody to tell me to do it. And, you know, so I started off with 5050, if she was getting four units a day, excuse me. If she was getting four units a day, I put two in in the morning, and 12 hours later, I put two more in. And then I started being like, Huh, like at night, she's staying stable. But during the day, she's a little high. So it's like, let me try two and a half in the morning, and then two at night, and I just kept messing with it until I got it right. And it messes with your head a little bit when you first started because your picture this 24 hour clock in your head, you're like where do I stop? And what's that going to do to success? You worry so much about it when you go to do it. But splitting that insulin absolutely was a game changer for Arden. And do you and I want you to tell me how you talk to people about splitting so and you would you wouldn't split receiver right because receiver actually seems like it makes it like 18 hours or a day and a

Jennifer Smith, CDE 9:40
hacker actually trusts eba from I mean if you pull out like the pamphlet details and all that kind of stuff. I mean it's a 24 hour acting insulin but the action profile is a true 24 hours at a minimum meaning many people know that it does last longer than that 30 hours, 36 hours, which also in terms of like dosing allows a little bit of leeway. Let's say, You were always really strategic about making sure you took whatever basil it's with, let's say it was love Amir once a day or lantis once a day at like 10pm. And it had to be 10pm every night or you notice like you did that after that it was just all out of luck because it was gone, or it was dissipating. Right? Not so much with Chris Eva, you could have leeway on erring on the side of later. If 10pm was your dose, but you didn't get to it until midnight. For the most part, you could be pretty okay or you would be pretty okay being sort of delayed in getting to taking it. But that's not really the case with like your lattices and your love Amir's. So for splitting like 11 year in terms of what we usually do, when it's really evident in data, kind of like you were following, even with the sort of rudimentary stuff,

Scott Benner 11:05
paper a pen and a little, I wish you could all see the meter. It was just like, it felt like it was gonna fall in half sometimes.

Jennifer Smith, CDE 11:13
Plastic carry, I mean, they're all plastic, but like, this was really like, not like that. Yeah, yeah. But you know, you we look at data and we say, Okay, this is clearly not serving you well. In fact, a good like basil sort of evaluation on like 11 year would be when you dose it, and you think you've got the timezone where it's dissipating in use, just don't Bolus and eat after that and see what happens to your blood sugar. Right? That's a really good way to analyze about the stoppage point, which then would give you more detail to splitting it, we do still try to do about a 12 and 12, in terms of hours in, you know, break. So morning, 6am, evening, 6pm, or whatever you want to do like that. We start with a 5050. Unless there's very definitive data, again, that shows a time period of the day with a lot more sensitivity and a time period where there's a lot more resistance. So let's say once we start splitting with 5050, the overnights are like, God, you're dropping, you're dropping, there's I gotta feed and feed and feed and we're in the daytime, you need more like you saw, right? So then we would really probably do more like a 7525 kind of thing more in the daytime, less in the evening or opposite, maybe less in the daytime and more in the overnight, especially if growth is a potential issue or there's stuff that's causing rises overnight. So the breakdown, we start with 5050. And then we go ahead with looking at records to see how to adjust it. Yeah.

Scott Benner 12:46
And in this again, to be clear, this isn't something you would do with anything other than Lantus or levemir.

Jennifer Smith, CDE 12:53
Correct. And for the most part, even Lantus, most, maybe not even lentils don't really need to split lantis, like that.

Unknown Speaker 12:59
It had

Jennifer Smith, CDE 13:03
in little doses, sometimes it becomes necessary, because the smaller the dose, the less lengthy the extension of use to a two to a true 24 hour gotcha. And same thing with a baseline basal insulin, that's a very large dose, we see large being more than about 40 units at an injection point. While you might take it once a day, you know, 8pm at night, anything more than about that 40 units in one pop, we split into two injections, gotcha. If you're taking 60 units, 30 units in one hip 30 units in the other hip or butter leg or wherever they're kind of putting it because that big depot under the skin. It's a lot. But

Scott Benner 13:51
is it true that those two those those insulins go under the skin they crystallized and they kind of melt away? Is that the functionality of it? Or am I

Jennifer Smith, CDE 14:01
wrong? I guess in terms of chemistry, that's kind of a way to look at how it doesn't get all absorbed, like our rapid acting insulins do like, you know quite right away or so to speak. Um, it forms more of like a solid like crystal, I guess.

Unknown Speaker 14:15
Yeah. And then and then it just sort of gets used slowly.

Unknown Speaker 14:18
That's not a bad way to describe it.

Scott Benner 14:20
I made that up years ago for the podcast or for the blog. And I just couldn't I was trying to explain it to somebody one day I'm like, just imagine it goes inside it kind of isn't liquid anymore. And then it just slowly kind of melts away and gets used up over time. It's time like throwing water

Jennifer Smith, CDE 14:34
hot water into the air on a really freezing cold day it crystallizes and then I probably

Scott Benner 14:38
could have just had time released now that I'm thinking of it, but then we will visual is more fun. It is more fun that way. So the reason I bring all this up is because watching people manage with MDI and getting this in their head that hey, I put that in now that's gone. I don't have to think about that anymore. Like that. It's it's, it's it's another avenue for me to watch people under represent how important their basal insulin is. And I guess then if I'm telling you what the real difference between pumping and not pumping is, is the ability to change your basil on the fly, day after day or segment after segment is kind of huge now I'm not a big proponent of having like 1000 basil programs, I'm I try to keep them pretty close, and manage everything else with with boluses. But there just can be no doubt, especially if you're a hormonal person, a woman who gets her period a little kids who are growing. I'm watching at times, like, like, I'm something it's a little exasperated right now and kind of blown up to make the point. But Arden is trying birth control pills to regulate her period. So poor Arden's period is not great. It comes, it literally doesn't stop, like in the last 60 days, Arden, you know, she hasn't had four periods, but she's had four episodes of bleeding that have lasted at least 11 days. So she gets 11 days, a five day break, and it comes right back again, right? So we're trying to regulate it with the birth control,

Jennifer Smith, CDE 16:15
not like a lot of women do that,

Scott Benner 16:17
please, whatever works, whatever makes her feel better, I'm good with. But the point is, is that we introduced more hormones into her body. And I watch her Basal needs change significantly. And I think, what would another person do? Like what do people do when they're on MDI and their I don't know, they're shooting five units in the morning. And that works for them, right? And then all of a sudden, something happens that puts their need up, it's kind of the last thing they would think to do is give themselves more basil. If they run empty, I think I think they'd be like injecting and injecting trying to stop highs and everything and just think, oh, why am I getting high diabetes? You know, instead of that?

Jennifer Smith, CDE 16:57
You're just the dose? Yeah, totally an MDI, which is what I had to do in terms of the same scenario as Arden when I was on MDI. And I had my period, I had to take about 20 to 25% more insulin in the days before it started, right, in order to calm down the impact of those hormones.

Scott Benner 17:22
100%. Like, it's well, but here's what I see the fear from people, which I don't not understand. How do they know how much? Because once they put it in there, it's in there, right? When I do it with a pump, I just go, I don't know, turn it up to this. If that didn't work, little more, was that too much? Take it away. But once you make the decision, I usually get five, I'm gonna put in seven, you can't take it out again, you know, it's in there. And that's got to be the piece that stops people from making the adjustments, don't you think? Like, that's the fear part that gets to them?

Unknown Speaker 17:57
Yeah, I mean, in general,

Jennifer Smith, CDE 17:58
depending on why you think the increase is coming. There's a general idea of about how much you might need more. So for a woman again, in that time of the month, typically somewhere between about 20 to 40%, more baseline insulin is needed to calm the impact of those normal monthly hormones that are cycling. For things like an illness, you know, like a nasty cold or whatnot. Most people need at least 25% more insulin on a basil level for an illness. So having some parameters to start with, for known situations, can help give you I guess, a math equation to figure out how much more to add in this scenario. If it's just like, oh, today, I'm running higher. I wonder if it's going to happen tomorrow. I need a little bit more data than just today. Don't be like, Oh, I'm running, you know, 70 points higher. I'm going to add four more units to my Lantus dose tonight. See if that helps, it is not what I would recommend doing.

Scott Benner 19:08
Yeah. But you have to you have to incrementally move. And it's just I feel for people who have that. Well, once it's in there, it's in their fear. Because I remember the first time somebody showed me an insulin pump, the first thing I thought was I can manipulate basal insulin. That was my most excited idea about pumping. I'm sure Arden did like not getting shots, but that's what I was thinking about. And it just so Okay, so you might need to split lava mirror, you don't think you'd need to split lantis tresiba can last much much longer. So it's on a different cycle. Here's a really out of left field question that maybe you're gonna tell me I'm an idiot on. But now that we have this conversation, I started thinking instead of splitting the lever mirror, should I have just shot less every 18 hours? Would that have worked in that scenario?

Jennifer Smith, CDE 20:01
If you were, I mean, if you gave less in an 18 hour time period,

Scott Benner 20:08
would it have made it this far? Maybe not, maybe I would have to shoot the same amount every 18 hours. Right? Let's see, back then I didn't think about and this is kind of the next little bit I want to talk about here. And I'm gonna keep it all in one episode. Back then I wasn't thinking about timeline. So we've talked about it before. But I kind of segment Arden's management in my mind into timelines. So there's a 24 hour timeline that I step back and look at that, to me is how I figure out basil. And where I see whether or not I've Pre-Bolus Well, or chosen the amount of insulin for food while But then I also think of timelines of meals. So in terms of how long is food going to be in our system? And where is it impacting or along the way. And so there are times that I change the impact of the insulin through the timeline of the meal. That's just sort of how I think about it. So there's a bigger timeline, that's 24 hours, then there's a smaller timeline that to me begins with a Pre-Bolus. And then any kind of fat or protein rise that I'm going to see. And then when the insolence out of her, those are sort of the two kind of ways that I think about it. And just now while we were talking, I thought I wonder if I couldn't have manipulated that basil insulin. Instead of thinking of Arden as a 24 hour timeline, what would have happened if I thought I was like, sure, whatever

Jennifer Smith, CDE 21:27
you did, and I think in hindsight, and that's the reason I wouldn't have, I didn't kind of comment on doing that. Because it, it becomes a little bit harder than because that 18 hours is always changing the time of 18 hours. Right, right. I mean, if you're going from taking it at six o'clock in the morning, 18 hours from there,

Scott Benner 21:50
what I really even think to do it, then

Jennifer Smith, CDE 21:51
would you even think I mean, you'd have to if you really did think it was definitely 18 hours and the dose was right, because the time in that 18 hours was spent in target along with the boluses. And everything was jiving the way that it was supposed to. It was after 18 hours that everything went sort of kakui. Yeah, then sure you could dose every 18 hours, but then you really have to be on top of setting a reminder that says this is 18 hours, this is time to dose.

Scott Benner 22:19
Yeah, it doesn't lend to what I'm saying doesn't lend to the idea that time is kind of artificial. Like you don't realize that till you really think about it. Like you're just running your life by a clock because we've all agreed to do it. Yeah. And so. And I'm thinking of it as a person who pumps insulin into his daughter, not as a person who shoots it anymore. Like what I really think too, like you said, 7am would turn it into what, like one in the morning or something like that, like what I'd be like, Hey, you know, well, probably not. But it still was an interesting kind of like exercise to consider just now like, like, I'm not saying you should do it. I've never done it. I can't stand behind this idea at all. It just kind of popped into my head as we were talking about it. Yeah. So okay. So when you're using tresiba, as example, your timeline, your macro timeline isn't even 24 hours. It's longer than that, but you still shoot it every 24 hours still

Jennifer Smith, CDE 23:16
give it every 24 hours. Exactly. Which again, in terms of use, I don't have a good amount of people who are using it because the majority of people just don't want to stay on MDI so long anymore. They just don't. I have I've had to in the past year women that I've worked with through pregnancy, who are MDI, and did it through pregnancy, and they were actually 11 mirror users, okay? Because it seemed to actually work better in terms of that dosing adjustment strategy gave you more

Scott Benner 23:57
flexibility to give

Jennifer Smith, CDE 23:58
more flexibility.

Scott Benner 24:00
Gotcha. How often do those people's levels change? Like how often are they their level are going up or down frequently?

Jennifer Smith, CDE 24:10
Specifically in pregnancy Yeah,

Unknown Speaker 24:12
those two Oh yeah, a

Jennifer Smith, CDE 24:13
lot. A lot. A whole pregnancy.

Scott Benner 24:16
All right. Now this is the eye you're losing me I've lost the ability to make eye contact with me while I'm talking now Jays The only person I look at long interview well while I'm talking but I'm so far in my own head thinking about like different timelines and overlays of influence everything like I'm just but and I know that sounds like probably nerdy and too deep. But I didn't know you could be nerdy about using insulin but I now learning it's possible that I am. So but there's a way to layer it on there that creates all that and and even thinking about that receive a piece like really think about that for a second. You shoot it every 24 hours, but it lasts longer than 24 hours meaning that somehow when you initially shoot it, it's got some sort of A ramp up period. That's because the beginning of the new shoot and the end of the old shoot are working together, kind of overlapping. And then there's a middle section where the new shoot is the only thing happening. And then the new shoot leaves a tail that you overlap with. Oh, that's good. I love that. I don't know why I like

Jennifer Smith, CDE 25:19
it from the couple of people I've worked with with tresiba. One of the times of day that most people have trouble with, of course, is the morning, right fasting time, breakfast time. So if you're taking your trusty bus in the morning, you have a potential for actually improvement in the aftermath of like a breakfast because you have that if there is for you, that like window of time where you've got the new one going in and ramping up, and the old ones still potentially dissipating out. So a bit of a layering effect there.

Scott Benner 25:56
I was talking to someone recently, and I said, Look, you don't have to do this. And I was like, I'm not saying you should. But I'm wondering if I was you? Would it be interesting to get up every night just for a week at 3am and shoot your your long acting insulin then to see if that quells the feet on the floor and the rise in the morning? Because you're getting up. All this is hitting you that insulin goes in. It's not working yet. But what if you just and I was like, obviously, it's not a long term fix. But if but if you were on a pump, I would say to you, four or five o'clock in the morning, I think you should ramp your basil up to get get ahead of this thing. I was like, I wonder what would happen. I wonder if that person ever did that.

Jennifer Smith, CDE 26:39
And they were inject they were? Yeah,

Scott Benner 26:41
yeah, they were empty house like just tried for a week to see what happens like set the set the dejection up, put it off the side of the bed, set an alarm. And then shut your eyes and go back to sleep and see what happens. I was like, just for an experiment. But you know,

Jennifer Smith, CDE 26:54
I think that's actually kind of one of the reasons that I'm so it's really hard for me to sleep in. Because from whence I was diagnosed. I mean, I had really, really old insulin. I mean, I had what was el insulin, the cloudy mix it up, you know, regular insulin. And that was even more than our current long acting insulin. That was very much you were on a time schedule. It was take it at this time, eat at this time have snacks at this time, because this is the action profile of the insulin. You have to meet it with food, correct?

Scott Benner 27:32
Yeah, there's no there's no other option. So you think to this day you can't sleep in because you're used to getting up to give yourself

Jennifer Smith, CDE 27:37
I really think that's it. I mean, in high school. And then in college, I mean, I kind of offset it in a way I never, I never didn't take my insulin on time. But I would set the alarm, get up, take my basal insulin, and then just go back. Once I was on like Atlantis, you know, I couldn't I didn't necessarily do that with my L or my lenti was what it was called. And my regular because I mix those in a syringe. So I didn't ever do that. But I did do that with lambdas because I was like I want to sleep in so I just I would take it and then go back

Scott Benner 28:20
to this pandemic lockdown stuff. I have lost all semblance of understanding of what time means. Nothing matters anymore. It doesn't matter. The other night. I was it was last night. I was putting the podcast together and I got done. Put it online. I was like I'm gonna watch TV. I looked up on like, it's midnight. Like, what am I doing? It didn't even matter. We're eating it odd times a day. No one cares. No one knows what day it is. It's like it's I know,

Jennifer Smith, CDE 28:49
if I didn't have a calendar to go by every single day. I wouldn't remember what day of the week it was either.

Unknown Speaker 28:56
Who would even know? Like,

Scott Benner 28:59
even it's almost been in the house for like the rest of us. I think we're on 10 months now. Like more than 10 months. I I don't know somebody asked me like what would you do if this was over right now? And I was like go to an island. Yeah, like just get on a plane and fly somewhere warm and sit down for a minute just you know, to see something different. I don't even know like but that was what it reminded me of when you said that. Like I sometimes the kids get up they do something for a couple hours. They go back to sleep again. They get up again they're Arden's done school at 1230 in the afternoon. Like why are we getting the kids out of bed at 630? If like, if nothing matters. I don't understand anything. It's just I if I sat here and told you the number of television shows I've watched to completion in the last 10 months. It's embarrassing. It's embarrassing. I off the top of my head Friday Night Lights. I've rewatched mash. Mash it was like 11 seasons the whole thing like the whole damn thing. Friday Night Lights on Halfway through new girl now, I just watched a reality show where glassblowers competed in a competition. I loved it. These are not things I would normally watch on television. Now,

Unknown Speaker 30:13
if you watch the Have you watched the tattoo one?

Scott Benner 30:17
No, but I will know that you said

Jennifer Smith, CDE 30:19
it's interesting. I can't remember. I think it's on Netflix. But yeah, it's a whole. I've only watched a couple of them with my husband. But yeah, it's a competition between like the top rated tattoo artists being judged by one of the judges is some big like, movie, not movie music. I can't remember which band he's in Tommy Lee.

Scott Benner 30:43
I'm guessing

Jennifer Smith, CDE 30:44
anyways, these tattoos are like amazing. Phenomenal, like, amazing.

Unknown Speaker 30:49
But there you go. There's

Scott Benner 30:50
a new one that was last blowing. I was like, this is fascinating. Like, I'm just I watched the watchman. I swear, I should sit down and make a list. And I'm always doing something else like I am. Like, I watch while I'm cooking. Or even while I'm working. It's on a different monitor or something like that. I don't

Jennifer Smith, CDE 31:07
really sit idle and like, I don't

Scott Benner 31:09
remember the last time I did that. But even that bothers me. Like, it's not that I'm all for like laying around watching television, but nothing. And then I never feel like I'm getting anything accomplished. Which is another horrible feeling. And I know this is bad. Like we need to, I want to take my vaccine and I want to go back and go somewhere. Yeah, I'm gonna get a vaccine. I want to go outside. You know, here. In this time, I've taught myself to smoke BBQ. make pizza dough, so that I can actually make a pizza like better than the one you would get at a pizza place. I bought an oven to make the pizza dough. And because I couldn't get my oven to get hot enough jet. What else am I gonna do? And somebody just bought me like a little beginner drone for Christmas. I'm teaching myself to fly a drone. Why? I have nothing else to do. So I'm trying to do something

Jennifer Smith, CDE 31:57
with sourdough to

Scott Benner 31:59
No, I. But I think about it.

Unknown Speaker 32:05
conversation about thinking about it.

Scott Benner 32:07
I think about it. But there's so much going on that I don't understand about starters and like live yeast and everything. I but trust me, this goes on six more months. I'm gonna teach myself how to build a brick wall next. Like I wonder how how do you do this? Like, I don't know what's up. And and to top it off before you go. A deer dropped dead next to my house the other day. Like went up into my land

Unknown Speaker 32:31
had a heart attack?

Scott Benner 32:33
I don't know. It went up in my landscaping laid down under a bush and died. Like you watched it happen. No, I walked outside. And I was taking down Christmas lights on the patio. And I'm like looking forward rolling lights up. And I look away and then I can hear the voice in my head Go was that a deer? Like, like, Look again, and I looked back and there was a deer laying under a bush. Now I'm staring at it. That doesn't seem like something I've ever seen before. Hmm, that thing's dead. So I go over and I'm like it's dead. Now what

Jennifer Smith, CDE 33:05
it was, was it still warm when you prodded?

Scott Benner 33:08
I don't think it was warm, then. So luckily, it's been cold outside or probably we would have noticed it was dead sooner. So I call the township and I'm like, Hey, what do I do? And they're like, well, we'll come get it. But we can't come on your property. And I went, but

Jennifer Smith, CDE 33:24
you had to drag it to the curb. I almost said

Scott Benner 33:25
to her, I make podcasts like I don't know if you understand who you're talking to right now. So yeah, I had to get a piece of rope, tie it up around its legs and drag a deer across my front yard out to the side. I don't know what else is gonna happen in this pandemic. But I would like it all to end because

Jennifer Smith, CDE 33:42
you don't live any wooded places like they would have gotten. I mean, this isn't deer hunting season. Shot just

Scott Benner 33:49
died under the bush somehow there's a pathway that goes behind all of my neighbor's backyards, where they make it from one piece of like woods to the next and they just walk through. And this one just I said to my neighbor sees me, you know, humping a deer across my front yard. And he goes, Hey, what's up and I was like, Hi. And and I said, you know, if this thing would have given up 50 feet sooner, this would be your problem. Like cuz he just made it over the property line. I was like, anyway, I feel bad for the deer. Then I had that problem. I was like, Oh, this poor thing, you know, but then there was another part of me going I think they carry ticks. Like get along. So I'm like, Who am I? I don't belong in this conversation. You know,

Jennifer Smith, CDE 34:33
typically do but not this time of the year.

Scott Benner 34:38
How would I even know that? That's ridiculous. All right. You have to go right.

Unknown Speaker 34:43
I do.

Jennifer Smith, CDE 34:44
realize we were like out of time.

Scott Benner 34:46
That's fine.

All right. I hope you enjoyed that. And if you're still here, I want to be completely honest with you, the next couple of minutes are going to be me talking about the advertisers. If you've been wanting to check one of them out, stick around, and I'll tell you how to do that. And if you don't, okay, you can go now. But first, let me thank the T one D exchange, and ask you again, to consider adding your voice to the work that they're doing. Remember, you want to be a T one adult, or caregiver who's a US resident, who has a couple of minutes to answer some simple questions that will go a long way towards helping everyone living with Type One Diabetes, check them out at T one d exchange.org. forward slash juicebox. There's links right there in the show notes of your podcast player. And of course, there's links at Juicebox podcast.com, if you forget how to get there. I also want to thank the rest of the advertisers, even though they don't have any ads on this episode. That's how much I feel good about them. And I'd like you to be able to get to them. So if you're looking for that Dexcom g six continuous glucose monitor, if you are using insulin of any kind, if you're a type one, you're a type two, go check it out. dexcom.com forward slash juicebox. And don't forget, if you get your health insurance through the Veterans Administration, the United States Veterans Administration, if you're a vet, I guess that's what I should have said if you're a US vet, go check them out. For sure. I think you might like the coverage that you find, but everyone has an opportunity to get a Dexcom g six by going to dexcom.com forward slash juicebox. There's a little bit of information you fill out and Dexcom is going to get back to you. If you want an absolutely terrific blood glucose meter, I suggest looking at the Contour Next One, and you can do that at Contour Next One comm forward slash juicebox contour makes an easy to use incredibly accurate meter that does not take up a lot of space in your pocket or your bag. Arden's been using it for quite some time. Now it is easily the most accurate, and handy meter she has ever had. What's next, let's see, Oh, I know. The Omni pod tubeless insulin pump, it is an insulin pump, it doesn't have any tubing to get caught on doorknobs. And also, because it doesn't have tubing, you don't have to take it off. It's self contained. You can swim with it, get involved in all of your favorite activities, take a shower, all the things where to pumpers would have to disconnect and you know likely have their blood sugar's go up because of it with Omnipod you won't have to on the pod would be thrilled to send you a free no obligation demo of the on the pod that you could actually try on and where to give it a little test drive of your own. It's nonfunctioning so don't worry, it's just for to get the feel, you know, my omnipod.com forward slash juice box, fill out the information, watch the Omnipod demo show up in your mailbox. I'd also like to remind you about touched by type one. It's a diabetes. org that does amazing things for people with type one. And all they want the whole world is for you to know that they exist. So check them out at touched by type one.org. They're also on Facebook, and Instagram. And of course my daughter carries the G Vogue hypo pen with her wherever she goes. Check it out at G vote glucagon comm Ford slash juice box. Okay, that's it. I have a little bit of time left, I want to thank you for listening for sharing the show with others. If you're an endocrinologist that recommends this podcast to your patients. Hit me up. I'd love to have you on the show. You could even be anonymous if you wanted to. What else? Thank you for the great ratings and reviews that you leave on Apple podcasts. And wherever you listen. And if you're listening online, please find yourself a podcast app. They're free. They're handy. Get in there and Subscribe, subscribe to the Juicebox Podcast. Oh, last thing. It's like the end of January. There's two more days left in January. And if it's not January 2021 anymore, you can stop listening now. But if it's still January 2021. And there's like a day or an hour or something left, download a couple of episodes for me, please. I'm right at the edge of milestone for this month. And I would just just try to push a little bit new meaning like go back and find a couple that you were like Oh, I didn't mean to listen that one downloaded. Or now's a great time to start with the diabetes pro tip series if you haven't, or the defining diabetes series. These are strewn throughout the podcast. I know the diabetes pro tip episodes begin at Episode 210. I gotta be honest, I don't know where the defining diabetes starts. But you can just search it right there in your podcast app, just defining diabetes and they'll all pop up and you can see them all I'm just blathering on now. I should hit stop but I don't even know what I'm gonna do with the rest of them. I think I might watch one division tonight.

That is the extent of my Friday evening. There you go. Now you know the excitement. I don't want to get off because I don't have anything left to do. I like talking to you guys. Thanks so much for listening. be back next week with more episodes of the Juicebox Podcast.

#433 Diabetes TrialNet

January 27, 2021Scott Benner

Carla Greenbaum, M.D. Returns

Carla Greenbaum, M.D., chair of TrialNet returns to the podcast to discuss research and type 1 diabetes risk screening. Get your FREE screening kit here.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to Episode 433 of the Juicebox Podcast. Today's show is sponsored by Omni pod makers of the Omni pod tubeless insulin pump, and they'd be happy to send you a free no obligation demo, all you have to do to get it is go to my Omni pod.com Ford slash juice box. And if you are looking for the most amazing continuous glucose monitor that I've ever seen, you're looking for the Dexcom g six continuous glucose monitor. And you can learn more about it@dexcom.com forward slash juice box.

Today we're going to be hearing from a returning guest, Dr. Karla Greenbaum, who happens to be running things over there at diabetes trial net. I really enjoy talking to Carl, I didn't realize how much I'd missed her until she got back on she's a real easy way about her. And I find it enjoyable to speak with her. So she'll be on in a moment to tell you all about trial net. But let me just tell you what it says right on their webpage trial net.org. Imagine a future without Type One Diabetes trial net is an international network of leading academic institutions, endocrinologist physicians, scientists and healthcare teams at the forefront of Type One Diabetes Research. We offer Risk Screening for relatives of people with type one, and innovative clinical studies, testing ways to slow down and prevent disease progression. Our goal is a future without type one diabetes. All right now let Carl explain to you what all that means. But trust me, this is not just some dry like oh research, you're gonna want to hear this. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan.

Dr. Carla Greenbaum 2:06
I do want to say that, you know, me personally, I'm in the wrong generation. I don't really do a lot of social media. I don't do any stuff, really. But I get reports from the team all the time. And they're always highlighting, like who do people listen to? And you guys are there all the time? It's really, it's pretty cool. What you've created. I think it's pretty amazing. Actually,

Scott Benner 2:26
no, I I still I mentioned trial net all the time. When I'm talking. You know, especially when you're talking to parents who have you know, or prospective parents who have type one, but don't have kids yet. I always ask them I'm like, you know, would you look, you know, what would you think? I've gotten very, very thoughtful answers on both sides back from people. Yeah. But anyway, I guess like, let's just start with, just, you know, obviously, I'll do a lead up to it at some point. But sure, just tell me who you are. Give us your credentials and tell us about trauma.

Dr. Carla Greenbaum 2:58
So Carla Greenbaum, I direct the center for interventional immunology, and the diabetes program at benaroya. Research Institute here in Seattle. And I also am the Chair of diabetes trial net.

Scott Benner 3:15
And you've had this job for quite some time now. Right?

Dr. Carla Greenbaum 3:18
I have good. I've been involved in trial net. And actually, it's preceding study that diabetes prevention trial since the early 90s. And trauma, it started in 2002. And I was Vice Chair for a number of years, and then I've been chair, I guess I should remember about six or seven years now. Wow. That's terrific.

Scott Benner 3:37
So tell us tell me, I guess the the overarching goal of trial net is like, what's the Yeah, what's the thing? Yeah,

Dr. Carla Greenbaum 3:46
that's a good way to start that So first, maybe just say that, you know, what is trial debt? Right. It's, it's NIH funded your tax dollars, international clinical trial network, whose job is to save beta cells. And we do that both before diagnosis to the idea about prevention. And we also do studies, you know, after diagnosis to save whatever beta cells they're left. And, you know, I always think about that that's really the mission. But the secret to what we really do, or the hint to that is in our name of trial net. We're all about doing trials, that's our essence. That's what we're all expert in. And that's what we really, you know, aim to achieve.

Scott Benner 4:29
So if, you know, so I guess on some levels, you need people's samples who already have diabetes. And you also like, I know you tested my son. Long time ago now about eight years ago, my son got tested and did not have any, any bodies that that indicated that he might have Type One Diabetes one day. And we had to go into his my daughter's endocrinologist office to get trialnet drawls, is that still how it all works?

Dr. Carla Greenbaum 4:59
No, it's complete. difference was a great question. So maybe I should step back for a minute and just put the frame around this. So trialnet screens people for the risk of diabetes through our pathway to prevention study. And you can think about that as the funnel, it's the way to test an awful lot of people to find the few people who are unfortunately likely to develop diabetes, because that's really the people that we want to try to see if we can stop or delay the disease. So the first step is this pathway to prevention, which is screening. But as you're talking about, you know, in the old days, you have to go in and get your blood drawn, and you had to go into only a selected number of places. But now, you actually can get tested by going online and doing a consent online and you'll get a kit sent to you. You could test your with a kid at home, you could do that at home, and you put it in a kit, and FedEx comes and picks it up, and it's all free. So that is really a huge difference from sounds like when your child was screened A number of years ago.

Scott Benner 6:04
No kidding? How long? Have you been able to do it that way?

Dr. Carla Greenbaum 6:07
We've been doing that now for a couple of years. I would say of course, during this year of COVID, it markedly increased. So certainly during this past year, I'm guessing don't quote me exactly, but at least 60. But up to 70% of all people being screened are being screened by doing this online, simple home delivery system.

Scott Benner 6:26
Does it cost anything? On my own?

Dr. Carla Greenbaum 6:28
No. Well, it costs your tax dollars, but it doesn't cost you to participate.

Scott Benner 6:33
I just think that's really important piece, I just ignore what I pay in taxes every year trial net is free.

Unknown Speaker 6:38
Exactly, exactly.

Dr. Carla Greenbaum 6:39
But that's that that's really an important thing, right? We are NIH supported. And all the work that we do is free to any participant, not just the screening, but the follow up, you know, consultation with people who are experts about diabetes and diabetes risk. And all the monitoring, we do to look to make sure whether people are progressing in their disease or not, and participating in all the trials all that?

Scott Benner 7:05
Well. So if I'm making up things now, but if I, I send my you know, if I have type one diabetes, and my brother's like, well, I want to see if I'm gonna get it, we find out he's got some markers, and how many markers are there?

Dr. Carla Greenbaum 7:17
Yeah, that's a great question. There are up to five antibodies that are associated pretty reliably with Type One Diabetes. And so trial that will test up to all five, we don't test all five right away, we test two and then depending on those results, we will test on others. But that's what we would know, people who have only one antibody, they just come in on an annual basis to see whether or not or they come in to provide another blood sample to see whether they are developing more antibodies. Because everything we know now suggests that it's really having multiple antibodies that really puts the individual at risk for progressing. So that's our, our main group that we're looking for it Atlanta, buddy. So

Scott Benner 8:01
if I have multiples, so my friend yes scenario has multiples is what are some of the ways that you try to slow the progression down?

Dr. Carla Greenbaum 8:11
Well, the first thing when somebody has multiple antibodies is that we asked them to come in to do a test to see where they are on that path, right? whether their blood sugar's are still completely normal, or whether there's anything already abnormal, because that tells us which clinical trial that might be eligible for. So currently, we are running two different clinical trials for people that have multiple antibodies. One is using a drug called a bad acept or redsea. And that trial has been going on for quite a while now. And we're actually anticipating having the results of that trial before the end of 2021. And the second trial, the one that we're still recruiting for is using a drug called hydroxychloroquine, which has nothing to do with COVID. For the purpose

Scott Benner 8:59
of our study, we now all know what it is.

Dr. Carla Greenbaum 9:01
So yeah, we now would, but the good news is it is an oral medication that people can take. And so people who have multiple antibodies, and have normal glucose can be in this study. And the idea is to figure out whether hydroxychloroquine can slow or delay people progressing to getting diabetes. And it's a really interesting drug because it's been around for more than 50 years for totally other purposes. But it is now widespread use for people who live with arthritis, which of course, is another autoimmune disease like diabetes. And that's true in both kids and adults. So there's lots and lots of information about this drug. And all of that suggests that it could slow disease if it's given early on. And so that's why we're doing that study. And that's ongoing right now.

Scott Benner 9:52
Is that medication, what is what it does centered around inflammation.

Dr. Carla Greenbaum 9:56
Yes, yes. So to a certain extent hydroxylase When works about me how to explain this, there's different of course arms of the immune system. And one of the early steps in autoimmunity we believe is what we call turning on the innate i na te immune system, which is like your immediate response. And this is what we think hydroxychloroquine interferes with. And it's why we hope it can slow the disease.

Scott Benner 10:27
If If a person has multiple antibodies, is it? Are they definitely going to get Type One Diabetes at some point? Or is that not

Dr. Carla Greenbaum 10:36
the case? That's a great question. Because, as you know, this whole notion of stages of diabetes, which means that once you have multiple antibodies, and you have normal glucose, you're at will be called stage one diabetes. And if you have multiple antibodies in your glucoses, are not quite normal that stage two, and stage three is what we used to call new onset diabetes. And that whole framework was really based on all the studies that do suggests that unfortunately, once you have multiple antibodies, it's extraordinarily likely that you will get clinical type one diabetes. Now the important piece that people often miss, it doesn't tell us when you're going to progress to getting type one diabetes, some people may live with multiple antibodies for a long time, and other people will get diabetes in a short period of time after the antibodies appear. So it's the antibodies that tell us who to test further to see who's going to be getting diabetes sooner to see about who could be in our trials. Gotcha.

Scott Benner 11:43
And this is just a point where I mentioned we're talking about type one in case,

Unknown Speaker 11:47
yes,

Dr. Carla Greenbaum 11:48
type one diabetes. And, and, you know, I should say that the, the study that tronic conducted, where we showed that one of the drugs that we tested lism ab could slow progression in people that were at risk for getting diabetes. You know, half the people who had received the placebo, got diabetes very, very quickly, within two years. So when I say that just having antibodies doesn't tell us how long it takes you to get diabetes, it's really having antibodies and doing these other tests that we can help give you information.

Scott Benner 12:22
You know, I have to say that I've now interviewed a number of people who have gotten it in their 60s. Yeah, and I feel like, a decade or two ago, someone would have told you that was impossible. Yeah. But yeah, just I've just talked to too many people who who've had it happen. And and I think at this point, now, if I should have made a flowchart at one point in my life, I've probably spoken to somebody who's been diagnosed at every age between one seriously between the newborn and like, in their mid 60s. So yeah, nobody ever. I mean, don't get me wrong, there's, you know, there's sweet spots, it seems like where people like, you know, they're all like, always, like, 28, or just getting ready to go to college, or, you know, like, there's, there seems to be, I mean, this is very unscientific, but there's there seems to be some sweet spots where it happens. But I, I've had somebody say, every age that I can think of, so

Dr. Carla Greenbaum 13:14
you're absolutely correct. So what you talked about the sweet spots is what we what we talk about by modal distribution, that's a fancy science word, which basically says, if we look at when people get diabetes, there's sort of the group of people, they get it really sort of pre puberty, kind of six to 10 year old range. And then there's another blip around puberty, that people get it. But then we do know, people like you found right people get diabetes, it also Type One Diabetes at all stages. What we don't know, for example, is somebody let's say they have just one antibody. Now, people with it, we test to only have one antibody, we know about 20% of them, will develop more than one antibody after about five years. But we don't know if the other 80% will eventually get multiple antibodies, or will develop diabetes with having only one antibody decades later. We you know, because we haven't followed people 60 or 70 years, right? We don't know that for sure. Wow.

Scott Benner 14:22
What about having other autoimmune like if you have a different autoimmune issue and have an antibody? Does it change your your odds?

Dr. Carla Greenbaum 14:30
What changes your odds is your genetics, right? So your genetics is what sets up any autoimmune disease. And if you have another autoimmune disease, that means you have the genetics that puts you at potential increased risk. But once you have multiple antibodies, diabetes related antibodies, the genetics don't seem to matter that much. So it really the genetics tells you, who's going to give you who's going to have antibodies Not who's going to progress once you have antibodies. Milan, go, I'm sorry, I'm sorry.

Scott Benner 15:04
No, I didn't mean to stop you, if you have something else, thank you,

Dr. Carla Greenbaum 15:07
I was just gonna say that's really why trauma focuses on screening relatives, right? Because we know that's a genetic screening test. If you have a relative with diabetes, that means the genes are in your family more concentrated. And if we screen, you know, we will find about one out of every 50 relatives will have multiple antibodies. It is true that people who never had a relative will get diabetes, but we'd have to screen 750 people who do not have a relative to find that one with multiple antibodies. That's interesting.

Scott Benner 15:42
Let me ask you this. If Can I pluck two people off the planet who are married, and we screen them and find out if their children have more or less of a chance of having type one?

Dr. Carla Greenbaum 15:53
Hmm, not really, because the genetics give us I think what we call a fertile field, right? They give a probability. But they're not like genes that cause particular kind of breast cancer or Huntington's chorea. In other words, monogenic diseases, right? They don't, they don't say you're going to get it. So we could give some ideas, but we can't give enough information. We know some genes that are associated with getting diabetes, but there's a lot of people who have those same genes who never will. So genetics alone doesn't help us. On the other hand, as I mentioned before, we do know about what happens in relatives. So if you're an identical twin, the risk is very high. If you're a child of a father with diabetes, the risk is higher than if you have a mother with diabetes. So we do have that kind of subtle information.

Scott Benner 16:48
Are you learning about? How does diabetes skip generations? Or? Or is it just random? You know, Scott,

Dr. Carla Greenbaum 16:56
it's so funny how often people ask me? No, it does not skip. So that is not true. I don't know why people get that idea. I hear it all the time. But

Scott Benner 17:10
it's just anecdotal. Because probably what you just said is you're more likely if your father has than your mother has. So yeah, maybe your father has it. You have a daughter who doesn't have it, who then has a son who then does have it and then it makes it feel like it's skipping agenda.

Dr. Carla Greenbaum 17:23
Yeah, yeah, you're right. I mean, I don't mean to be No, no, I don't mean to be polite about it. But in general, No, unfortunately, that's, again, why we screen first degree, family members that his immediate family will screen people up until age 45. Where second degree, we actually only screen to age 20. Because the rest becomes lower. The further genetically you are from the person with diabetes.

Scott Benner 17:53
After the obvious goal of helping people who use screen and find what are other goals of trialnet, like, what else am I helping?

Unknown Speaker 18:01
Mm hmm,

Dr. Carla Greenbaum 18:02
great question. So one of the things is that we're helping is that we are providing hope and support for people, right? If you have somebody with diabetes in your family, you know, you are worried about other people in your family. And most the time, you'll get pretty good news, right? Because only about 5% of people will have antibodies. But if somebody is antibody positive, you know, we're kind of there for them. Right? It's like, when a physician has to give bad news to anybody. This is bad news to let people know that, you know, unfortunately, now you have multiple antibodies, but we're there to monitor and follow them carefully. And, and provide opportunity, and to have them prepare if that diagnosis will occur if a trial is not available for them. But on a broader scale, what we provide, and what participants provide to everybody else in the future is, every bit of data we get from any study we're doing is really laying the foundation for the future studies. So trial that was based on some of the studies that were literally started in the 80s, where we studied every family member we could find to measure everything we possibly could. And that's what led to this whole notion about what what predicts risks. So we learn about the Natural History of the disease, we get a better understanding of who's more likely to respond to certain therapies. You know, we really learn a lot from everybody who participates.

Scott Benner 19:33
Yeah, it's, I find it encouraging and whimsical to think about that somebody started something in the 80s that's helping somebody in 2021. Yeah, and I can see how also somebody would think that and go, Oh, great. So they'll figure this all out. 10 years after I'm dead, but but but you really are in. What it reminds me of is that I interviewed somebody who works at NASA recently. I ended up asking what does it feel like to be involved in something that you may never see the fruition of your work? And I guess I feel drawn to ask you the same question.

Dr. Carla Greenbaum 20:11
Well, I'll have to throw in a famous Tom mutek, saying for the Jewish tradition, we're towards the Hasidic story, which basically, somebody goes to this old man who's planting a tree, say, What are you planting the tree? For? You're not going to see it happen? He said, Nope. But my grandchildren will. And that this is all about, you know, thinking beyond myself, and thinking about the future. And that's what we do. I mean, all researches this way, we all have little, little pieces in this puzzle. And you know, the cliche of standing on someone else's shoulders is what we do. So I must say that I'm super excited in my research lifetime, how much has happened, right? We went from not knowing what could predict. And now we can predict. That was like, we couldn't do that before. We went from not having anything to do about it to now we have a therapy that's now been shown to stop diabetes. Now, in fact, there are seven different therapies now that can alter the disease course in diabetes seven. There Were None that long ago. So it's a little piece of the puzzle. We haven't gotten to the destination of curing diabetes yet. But boy, we've made a lot of changes.

Scott Benner 21:29
Yeah, I always imagine that. That the end goal for all these different things like you can use curing diabetes as an example. But the end goal for something, I imagine will never be reached the way the person in the moment now thinks it's going to be reached. Yeah. Do you find that you learn things along the way that reframe your thinking about how to reach that end goal?

Dr. Carla Greenbaum 21:55
I love that. That's a great, that's a fabulous way of thinking about it. I

Scott Benner 21:59
think, Carla, I don't even smoke weed. I just came up with that. I was

Dr. Carla Greenbaum 22:02
just gonna say that's like, totally, you know, 60s thinking now I'm teasing. I would say the answer to that is, whereas much of science progresses in increments, right, where we build on an observation somebody made. And we test that further, we build on another observation. There are certainly times where there are paradigm shifts, right? where somebody came up with a whole new way of either looking at the same data or has a new tool to measure something differently. So you're right. I don't know what the future of this is going to look like. I hope there are clever people in the future, who will, you know, change the paradigms a little bit and advance things even further.

Scott Benner 22:49
Yeah, it just, it makes you feel inside. If you're being whimsical, that one day someone will be able to say, Oh, you have an antibody in your, in your system that you don't want, we'll just take it out. We'll put this thing. Hey, kills it, you know,

Dr. Carla Greenbaum 23:03
you know, like I said, I'm old enough to know, when the whole idea when, when Amazon was first starting to sell books online. You know, I live in Seattle area. And I was telling and there was an opportunity to invest. And I was telling my husband, that's ridiculous. No one's going to give a credit card to somebody online.

Scott Benner 23:22
Well, I yeah, I don't know that people understand. It's funny. We were just talking about this in my kitchen, the other day where I was explaining to Arden, how quickly technology like builds on top of itself. Yeah. And you know, I stand around with my kids who are 16 and 20. And I told them the story I said, you know, when I was 13, I bought the most advanced consumer computer that existed. And I was like, I took it home. And I bought a book, a book at the bookstore that had code in it, I spent an entire day of my life. Looking at the book, typing in this code, he went on forever and ever and I got done. And I pushed Enter, and nothing happened. So I went back and I read the book and looked at the screen, and it took me hours upon hours and I found my typo, and I fixed it. And I pushed enter and a stick figure did one jumping jack on the screen and stopped. And I have to tell you, it was the most amazing thing I'd ever seen in my life. Alright, let's get into these ads and get back out quickly short episode short ads. The Dexcom g six continuous glucose monitor will show you the speed and direction of your blood sugar in real time. It will stop you from having to do finger sticks to know what your blood sugar is. And it will allow you to make decisions about insulin and food in a more precise and targeted way. And those decisions can easily lead to more stable blood sugars. Just imagine knowing how to balance your insulin against your food or seeing a small Lo come up and not over treating it with food because you can kind of watch it happen say, let me just try drinking a half of this juice box instead of the whole thing. This is amazing. On top of that, you can have up to 10 followers so somebody can be wearing the Dexcom g six and share their blood sugar's if they want with up to 10 followers. This is for Android or iPhone. And it's fantastic. I can get my phone out of my pocket right now and tell you what Arden's blood sugar is. And it is 119 and it's stable. I can see it's been stable for quite some time, that quickly if Arden's blood sugar leaves the range that we've set, which interestingly for this is 120 or 70, I'll get a little alarm and a beep beep Arden's blood sugars going above 120. And then we make a small adjustment to her insulin and bring it right back again, there are almost countless ways that you can use the information coming back from the Dexcom gs six, why don't you head over to dexcom.com forward slash juicebox. And take a harder look at it, see if it isn't something you think you might enjoy. And if you're a US military person getting your insurance through the VA, I think you're going to be super happy with the coverage. So you guys should head over to there's a quick little form to fill out and Dexcom we'll get right back to you and a ton of information that you can look at on your own. Speaking of forms to fill out, if you go to my Omni pod.com forward slash juice box, you can fill out a short form that will result in an Omnipod demo coming directly to your house. There you are a loved one can try it on and wear it and see what it would be like to wear a tubeless insulin pump not to be connected to any tubing or controllers and still get the delivery of insulin that you deserve meaning bezels while you're bathing while you're swimming during activity, being able to fine tune that basil insulin right not just inject it once a day and hope for the best. But be able to create basil programs like I don't know I want point five an hour from midnight to 6am. But at 6am I want it to be point seven or whatever you're in control of that. You're also in control of temporary basil increases and decreases extended bonuses and all kinds of ways to help with your insulin delivery to again be more targeted to your needs. Plus, it's tubeless. So you're not going to get wiring, wiring, you're not going to get tubing caught on doorknobs, dresser handles, or have to take it off to babe swim or be active or do adult activities. My omnipod.com forward slash juicebox get that free, no obligation demo sent to you right now let's know what I'm saying free, no cost to you. No Obligation means you don't like it doesn't matter. That's risk free in my opinion. There are links to Omnipod Dexcom and all the sponsors at Juicebox Podcast comm right there in the show notes of your podcast player or you can type them into a browser, my omnipod.com forward slash juice box dexcom.com forward slash juice box. And while we're talking about links, don't forget that they're not a sponsor. But Carl is here today sharing the news. So trialnet.org

a stick figure did one jumping jack on the screen and stopped. And I have to tell you it was the most amazing thing I'd ever seen in my life.

Dr. Carla Greenbaum 28:38
Yeah, well, I would say that, you know, the advances that happened in science are obviously not as touchable for the average person. Like all the technology has changed our world. But But if you look back with a little bit of a broader lens, the difference between what science has brought to healthcare and medicine now versus when I was at med school, which wasn't that many centuries ago. It's night and day. Yeah. And so I really do believe in science.

Scott Benner 29:08
I have to tell you that when when my son was two, so we're about 18 years ago, I'm 49 let me do the math real quick. I think that made me like 36 or 37 ish in there. Maybe 47 Nope, nope. 27 or 21 There we go. My appendix almost burst. When my wife was a child, she had terrible ear infections. And when my daughter was two she got type one diabetes, and you can go back in time not that far and make the case that all three of us would have died. We wouldn't be alive today, you know without just yeah, basic things that have moved forward. Yeah. Yeah. Really fantastic. And yeah, it's just I've always been thrilled to tell people about trial that and I and and then we get into that space right where Yeah. I do believe that people need to understand the benefit of finding out that they have the antibody. Yeah, because I get afraid that when people hear about it, they just think, well, I don't want to just worry, like, wait for the other shoe to drop. And I've also heard people thoughtfully say, guests on the show. Listen, I have type one diabetes, I've had it for 30 years, there's nothing wrong with me, I have a very normal life. And my kids could have a normal life too, if they had it, except the idea that you could maybe take a pill that could exponentially slow the, the onset down or even stop it. I mean, that's, that, to me, is where the exciting part is?

Dr. Carla Greenbaum 30:31
Yeah, I mean, I, I again, look, participating in research is not for everybody. And it's really hard to do it when you're making decisions for your children, for example, as compared for yourself, right. On the other hand, you know, all the money in the world is not going to bring progress if we can't have people participating. So every single person who stepped up to participate, just is accelerating our ability to test new therapies and to find new things. And, and yet, I know it's, it's a challenge. I guess, the only other comment I would make is that research in other areas where families have one child with a chronic disease, for example, has well documented that the other children in the family are wondering about them getting it as well. So sometimes parents say, I don't want to scare my other child, I don't want them to think that they might be at risk, what we know from all sorts of other studies that they're thinking about that anyway, whether they're saying it out loud or not, right. You know, and, and the other thing is that, you know, going back to the 60s, you know, knowledge is power. So I think, when people know that they're antibody positive, there's obviously a sorrow and grieving process around that. But it's such a wonderful opportunity to be able to prepare. And to, to not have to, you know, end up in the hospital with DK or something,

Scott Benner 32:00
no matter how many people I speak to, who are mis diagnosed type two and eventually find out their type one. Yeah, they all, I think I really mean all of them eventually say, it is better to know, than to struggle, or to wonder if they use words very similar. I've never heard anyone say, you know, I would have liked to have gone on thinking I had type two diabetes, when I really like one. And I'm just a big fan of that, like, in my mind, a bill comes whether I think I can pay it or not. I opened it up to find out what it is. Because now at least I know, you know, staring at the envelope closed it, you know, you can't you don't forget it's there. You just putting off the inevitable and maybe, you know, I don't like you know what, maybe I opened it up and realized, Oh, my God, I paid too much last month, this is a freebie I get the whole month of thinking I wonder bills paid already, you know, just yeah, to me. mindset. Yeah,

Dr. Carla Greenbaum 33:00
let me let me throw out a number for you, you know, for you and your your people listeners to think about this, that there's about 40,000 people that are newly diagnosed with Type One Diabetes every year in the United States. If three of each of them had on average, three relatives, that's like 120,000 people, right, which would be 3000 people that would be identified potentially, who have multiple antibodies. If we had that group of people regularly, we would be able to do all the trials much more quickly. And we get the answers much more quickly. That would help everybody

Scott Benner 33:39
people who hopes ever again, I have to say not to mix my apples and oranges here for a second. But I support the T one D exchange. And I sometimes struggle to explain to people why that's important, like, you know, to say to somebody like Oh, they you know, they took data and may and that helped the ADA bring down the a one c guidelines for children. And he hear that and it could it could be very easily you can hear that and go, like, why does that matter? But it but it you know, but it does matter? Because when the ADA says, Look, this should be a target, that every endocrinologist in the country reframes their idea of health. And, and even though it's a slow, you know, it's like, it's like turning, you know, turning a battleship. Eventually that means that everybody gets more targeted information about how to manage their blood sugar's and, you know, everybody can't listen to this podcast. I wish they could but and I know what happens when people listen to their, to their variability in their agency and their overall health, like having good information and good tools is the answer. But, but doctors, they take their marching orders from somewhere else, like largely, and so that's a hard thing to explain in a soundbite. And I think maybe you suffer from that sometimes to trying to say like look, you know, if this many people times this many people, what do you think? 1000 more people, you have no idea how helpful that information would be to help everybody. But now we said it. So now they just have to believe it.

Dr. Carla Greenbaum 35:09
Well, you'll just have to say it three or four more times, because that's exactly the point. I mean, it's, we need people to help us help them. That's really what we need. And, you know, our job is to do the best studies we possibly can. And to do the best we can to support people who are volunteering, you know, for participation. But we need people to participate. That's for sure. Carla,

Scott Benner 35:33
aren't you just gonna take my blood and make a race of lizard people and invade?

Dr. Carla Greenbaum 35:41
Listen, I think there is among the various, the tremendous tragedy that COVID has brought to the world. You know, there have been quite a few silver linings. And I think one is a little bit more insight into science, and what science can help and offer people, you know, was much more in the so called public square than I think it's been in the past. And I hope people see that the number we actually were involved in running one of the we were a site for the Pfizer vaccine trial this past year. We had more people wanting to volunteer for that than anything we've ever done. And I, you know, reflected on that. Why is it? It's because people saw it as an emergency. It's imminent, and people saw it as a public good. They saw how terrible things were and felt that they could contribute to making it better. Yeah. So maybe what we haven't explained clearly enough to people is that contributing is how it's going to make it better. And diabetes.

Scott Benner 36:39
Yeah, it doesn't take that much effort. I mean, honestly, I had to go into an office to do it that day, and it wasn't that big of a deal. And now you're saying I just went to your site. So I go to trial, net.org. And then I want

Dr. Carla Greenbaum 36:52
to participate. Now,

Scott Benner 36:54
I see that. And then oh, it's easy. I hit click Sign up. And there's it says you can get an at home test kit, visit a quest diagnostics, or labcorp. Make and that's it. Okay, so this seems pretty simple. And you put pictures of cute children on there, which is always a smile for a website?

Dr. Carla Greenbaum 37:15
Well, you know, we do have an awful lot of people have participated over the years that are really passionate and eager to tell their story. So we'd like to do that. And we anticipate doing that quite a bit more coming in the next quarter. Yeah, we'll have a whole new campaign where we're telling people's stories and why they participate and what their experience has been in trauma.

Scott Benner 37:35
That's excellent. It really is. I don't know. I don't know how to get through to everybody. Like, you know, I there's times I just think, like, just Just do it. Let's go do it. Like even, like, quick, let me ask you a question. If I wanted to help the, this is gonna sound crazy, because you probably isn't gonna work out the way I'm thinking of, but if I want to help the overall cause, but I don't want my results. Can I do that? No, because it would be medically unethical for you to know something about me and not help me.

Dr. Carla Greenbaum 38:07
Well, it just doesn't help me as much, right? Because we already know, if we got your blood sample, and you had antibodies, we already know what that means. We're not gonna learn anything from that gotcha. What we need is for people to be ready to be in studies to see if we can slow or delay the disease. So I appreciate the sentiment. And I should say, if you lived in Seattle, we would love to have your blood because we do an awful lot of work here, just a better ROI Institute to use blood samples from people living with diabetes, to understand the disease. So we're not running a clinical trial like trial meadows.

Scott Benner 38:43
But if I wanted to just drop off some blood at the institution, that separative trial that I had type one diabetes, I could do that.

Dr. Carla Greenbaum 38:50
Yeah, we have. Well, you don't just drop it off. But yeah.

Scott Benner 38:55
No, Carla, in my mind, I roll up to the curb, and I just toss it out the window. And

Unknown Speaker 38:58
yeah.

Dr. Carla Greenbaum 39:02
It's a little more than that. But yes, we, the reason why we some of the trials that we conduct, we have decided to do because of what we learned from studying blood samples and people living with diabetes. I gotcha. So, you know, all these different ways that people who have diabetes can contribute again, it's not really what trialnet does, in terms of people living with diabetes. But we do learn from samples all the time. Well,

Scott Benner 39:32
it's an amazing thing, like the work you're doing is it's astonishing. And I do think I do think it'll come to to some or a lot of good one day. I am you know, I have to say that for me being the parent of a child with type one I live, like diabetes won't be cured in my lifetime. I hope it will be like I always have the hope, but I prepare like it won't be because I get super afraid for People who have that feeling like, Oh, don't worry, they're gonna fix it soon. I don't have to take care of myself right as well. I'm always worried about that balance a little bit. But yeah, but that's what kind of struck here. Like, I wouldn't be surprised if I turn the news on one day. And some guys like, yeah, I used that CRISPR. Turns out, you just do this and this and,

Unknown Speaker 40:17
you know.

Scott Benner 40:19
And at the same time, if Yeah, I know, I'll never know. But I tell you right now, if I send somebody to try and get through this podcast 100 years from now, kids don't have Type One Diabetes anymore. I hope I can feel that wherever I am. Because Yeah,

Unknown Speaker 40:32
oh, I love it.

Dr. Carla Greenbaum 40:34
I love it. I love that sentiment. And I, you know, I would say that we do rely on people like yourself who are passionate, not only about helping people with type one diabetes, but sharing information. I think that's, that's really why the type one community is so amazing. do appreciate that kind of work.

Unknown Speaker 40:53
You have to scale it.

Dr. Carla Greenbaum 40:54
Before we leave. I should tell you about our new study, though. Is that okay? Do we have a minute?

Scott Benner 40:58
What are you kidding me? Yeah, I'm busy or something? It's, it's COVID. I'm just gonna stay?

Dr. Carla Greenbaum 41:05
Well, I've got backup calls. But we're okay for a little bit here. Listen, as I spent this whole time, right, we're all about doing prevention, right. But one of the other pieces that Tron that is now doing is looking out at different types of therapies that different companies are starting to think about developing. And we're going to those companies, and we're saying, Look, trialnet can do these studies for you, we can help move it along, we can bring it from the early steps to the next steps to the next steps. And so I'm really excited about this new study. So it's a phase one study. Phase one means first time the drugs ever been to get given to people. And it's just there for testing to make sure it's safe and helps us select what are the kinds of doses we want to use, right for the bigger trial. But this phase one study, if the results are good, is what's going to lead in the future the next step to prevention. So for this study, this is looking just for adults, because phase one means again, only first time and people so we don't give these therapies to children. And we're looking for adults who were within four years of diagnosis. And we're going to be giving them a therapy that I kind of call a designer drug. So it's a designer drug for diabetes that we're testing in this group of adults. So if people particularly people who live near a town, that center, that would be really great. And again, you should be able to read about that on our website as well. New onset studies under new onset studies. Top Bolus this study, spell it to ppl II. Okay.

Scott Benner 42:49
Well, I will make sure I'll put links to everything in here for that. Okay. That's excellent. I'm glad you told me about that. Yeah, I mean, just makes sense. Right? You're doing the work already. And yeah. And they're looking at the same things. You might just Well, I have to say that I had a gentleman on Dr. Millman. Yeah, you don't you know, Jeffrey,

Dr. Carla Greenbaum 43:09
I know of him.

Scott Benner 43:10
Okay, I had him on a couple months ago. And one of the things that it came away from that, that I came away going, Wow, that's crazy. Is it how much more science scientific minded people are now sharing what they learn. And it's, it's become less about, like, we'll just, you know, we'll, if we get it, it's ours. And it's more about, you know, about people being able to dig into other people's research into the labs, helping labs and everything. And I, you know, I really do forget the, the actual, like specifics of what he said, but he left me with a good feeling. You know, if somebody is having a good idea over there, and someone's having a good idea over there, and they're not talking, it seems like a like a waste of time. You know, so

Dr. Carla Greenbaum 43:53
well, you know, there is this, you know, old image of a scientist, you know, locked in their dark laboratory and, you know, never talking to everybody, but certainly clinical research is 100% us network, right, a collaboration I mean, trauma that has hundreds of sites, 1000s of people that are involved in making this work, so it's really all about communicating with others and, and building bridges. So sure, well, isn't Millman isn't no minute wash you He is to get you Yeah,

Scott Benner 44:21
yeah. I I forget why I ended up having him on but something he said something he said on Twitter or somewhere I forget where I saw it. I was like, I'm gonna come on the podcast. And he was just delightful. And, and what he talks about was just very aspirational.

Unknown Speaker 44:36
Yeah, I think that

Scott Benner 44:37
one of the things he said was like, is like the thing we're doing right now was just was just unheard of a short time ago like this just this is something that nobody could have even imagined. And, And that, to me is exciting. The idea that things are exponentially growing and scaling and

Dr. Carla Greenbaum 44:52
right and the cool thing is that a scientist like himself, who's developing new therapies will be able to something like That takes those and Testament people. That's why I'm saying it's, it's like, you know, it's a village, right? It's a whole community of different people using their skills and interests, who then pass that idea along for the next day. That's what it's all about.

Scott Benner 45:17
Hey, huge thanks to Omni pod and Dexcom for sponsoring this episode of the Juicebox Podcast. Find out more about that on the pod tubeless insulin pump at my Omni pod comm forward slash juice box and of course, the Dexcom g six continuous glucose monitor, you can learn about that@dexcom.com Ford slash juicebox. You can get your free T one D Risk Screening from trial net at trial net.org. And you can also find out about those other studies. Just the way Carla told you about. Why don't you check it out at trial net.org. That was pretty good. Right, Don? I did everything I need to do here.

Let me take a minute to thank everybody again for the great ratings and reviews even leaving on Apple podcasts. And wherever you listen to the podcast at thanks so much for sharing the podcast with other people for joining the private Facebook group, which of course is always free. Everything about the podcast is always free to you checking us out on Instagram, or wherever else you follow along. Let me just put this feeler out. If you're an endocrinologist who recommends the show to people, I would love you to come on and talk about that. You could be completely anonymous if you wanted to. I can't offer a voice changer. Although I don't know that I can't figure out how to do that. But you could be anonymous, I would love to hear from an endocrinologist that suggests this podcast to patients. So if you're that person, reach out, find me. I'd like to know more. There's going to be one more episode this week. And then next week, there's going to be an after dark. And what else I have a lot of really cool episodes edited. Which 1am I going to give you next week? So I think this weekend maybe Sarah

Unknown Speaker 47:21
maybe

Scott Benner 47:23
mirdif maybe gallon, maybe gallon this weekend. Next week. And after dark with Josh and Sarah later in the week. I think that's what I'm going to do then there's a how we eat coming up next the two weeks from now. And another after dark coming in the month later. That's what I'm gonna do. Yes, I've just talked myself into it. Now let's see if I can remember what I said the next time I go to put up an episode. Anyway, thanks so much for listening guys. I love making the podcast for you. Thank you for listening means the world to me. I'll talk to you soon.

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