#707 Printing A1cs

Howie is an adult living with type 1 diabetes and also the parent of a type 1.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 707 of the Juicebox Podcast.

On today's episode of the podcasts I'll be speaking with Howie he is a type one himself and the father of a child with type one. And I'm pretty sure that his wife made him come on the podcast. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Real quick, please remember, it would mean so much to me and to people with type one diabetes. If you took the survey AT T one D exchange.org. Forward slash juicebox. Go to the link. Join the registry take the survey takes fewer than 10 minutes can do it from your phone. You could do it on the potty. You know what I mean? Like you shouldn't sit that long. But if you're there, you could do it as what I'm saying. T one D exchange.org. Forward slash juice box. You have to be a US resident who has type one or a US resident who is the caregiver of someone with type one, take the survey support people with type one diabetes support the Juicebox Podcast.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by touched by type one go to touched by type one.org To learn more about their organization, or to get tickets for the upcoming annual event, which I'll be speaking at on August 27. in Orlando, Florida, touched by type one.org. Today's show is also sponsored by in pen from Medtronic diabetes. The pen is an insulin pen that does more than you expect from an insulin pen. I'll tell you more about it during the ads. But for now, you can go to ink pen today.com.

Howie 2:20
Howard's a whoops, don't want that. Take that back. I don't want say my last name. How we

Scott Benner 2:28
just say hey, oh, my name is Howard or something like that. Alright. Hello, my name is how we go. How are you? This is the most uncomfortable start to a podcast so far. How are you a parent of a type one or you have type one yourself? Both. Wow. All right, then now we're on to something. You listen to the podcast? I do.

Howie 2:50
So I've been listening to podcasts predominantly found out my wife. I mean, my wife is the biggest embrace of the podcast. Considering I've been diabetic for 42 years, I probably was a late adopter to the podcast. Most of this in candor has been in preparation. So I've listened to the Pro Series. I've listened to a lot of the recent ones to see and have those interviews or listen to how those interviews have panned out so I can be prepared. So your wife, the listener, she's more of the active listener to be candid with you.

Scott Benner 3:19
Oh, no, no, that's perfect. That's what I wanted to know. So tell me 40 You've been? You've had type one for 42 years. How old are you?

Howie 3:27
I am 44. So I was diagnosed February 18 1979.

Scott Benner 3:32
Wow. Wow. Okay, dude, first of all, you look super young. I appreciate that. To see you right before we started. You do not look. You don't look that and not that you're old. But you look really young. I appreciate that. So you were not my daughter was diagnosed when she was two.

Howie 3:48
I did actually hear that. And I mean, I've heard your journey. And that's pretty incredible that somebody with not that experience and doesn't sound like you're in the medical profession, New Zealand have recognized the symptoms. So kudos to you.

Scott Benner 4:00
I'm definitely not in the medical profession. I was. At that point, I was in the I was in the stay at home dad profession. Prior to that I did. Gosh, I worked in this little credit union where I did their graphic design stuff. And I actually collected debts for them before that. I I was basically a debt collector. I hated it. I was so good at it. And it made me sad to be good at it, if that makes sense or not. And one day their, their graphic designer quit and it was this really small place and I like I marched into the human resources office. I was like, I can do that graphic design job. And they're like, Do you have any background in this at all? I'm like, No, but I can do it. And I and the person had left kind of abruptly. So I I said come here. I went over to their desk. I sat at their computer and I opened up the stuff and I said Tom, I'll make something tell me what it is. And I did and they were like, wow, really? I was like, Look you can pay me less because I'm not qualified. I just wanted to be out of debt collecting so badly. So I was. So they gave me the job. And I worked there, right until my son was born in 2000. And then I've been a stay at home dad since the since the beginning of 2000. Yeah, so I had no medical background.

Howie 5:17
Well, I mean, hey, then you can be a doctor. Since you had no background in graphic design. It sounds like you pretty much could be a physician. So that sounds awesome. No, Web MD.

Scott Benner 5:25
Should I just go to the hospital, walk into your courses and be like, Hey,

Howie 5:29
sit down, watch me. Yeah,

Scott Benner 5:31
you can really underpay me, you're gonna save a ton of money. I mean, it's. But anyway, that's so in 19. Dude, I was eight and 79. That's a long time ago, how was mature first recollections of like diabetes management.

Howie 5:49
So I, I probably could remember going back to 566 years old. And it was mainly from just, I had very supportive parents. They managed it but didn't micromanage. I was never stopped from doing sports, I've never stopped from staying over people's houses. And diabetes in 1979 was much different than it is today. But my first recollection, Verlet recollections were probably lows at the time, because most of them happen at night. So I just remember, probably just low pass out events. And in the middle of the night, my parents supporting that, and sometimes even, you know, police in emergency would have to show up at the house, because like I mentioned, diabetes back then was quite different.

Unknown Speaker 6:33
Regular and mph, or lenti, how far back is 79.

Howie 6:38
So I did have both of those. I actually started on animal insulin when it was made with you know, pig fat. So I had that first, I was on NPH, I was on regular, I was on lenti. And I was on regular insulin for a long time. I mean, one shot a day and pH at night, six hour peak time, I might be wrong on that. Maybe it was 12 hour peak time. And then regular insulin would peak. And that's the thing. It was just you know, spray and pray basically,

Scott Benner 7:03
man, you are you're one of the youngest people has told me they've used animal insulin, I think.

Howie 7:08
Yeah, I mean, it's what's interesting is I actually was an avid injector in my stomach. So I really came, I actually had, you know, about swelling and hypertrophy from that, which actually to give listeners confidence has gone away. So part of my agenda that I actually wanted to at least discuss was my story and evolution of what diabetes is look like, how we found out when my daughter was diagnosed with diabetes, and what that what that has looked like, and then also just, you know, reinforce perspective, what it's like when being a patient of diabetes, you know, because what the parent probably goes through is very, very difficult. I always think that being the diabetic parent is much more challenging than being the diabetic patient. Because you can never opt out. There's not there's no off time. So if you're the patient, it just is what it is. So the parents seem that is much more difficult. So I would probably talk about the perspective since I've had both. So that's really the thoughts that I had, but yeah, you definitely

Scott Benner 8:09
you tried to evolve a lot. You tried to produce the podcast, I relaxed. I've been doing this a long time. I'm pretty good at this. Answer right through all those ideas. Can you let me be the funny one? I don't know. You're gonna you can try. I appreciate it. Okay, so, geez, two years old. 79. Your parents were so so you did get low. But it was mostly Yeah. Ever sleeping? What? How did they know? Would you cease? Or would you like was it sweating? How did how did you know you were low back then. If you were asleep, I mean,

Howie 8:50
so I didn't what's my mom, I don't think my mom has ever had a restless restful night ever. So I grew up on the East Coast. And I just had with Howard. So most of the time, a little bit of a helicopter mom would recognize lows during the day, I and then I was also trained to feel some of those lows. So there was no insulin sensors, the blood machines would take 120 seconds in order to record a blood test, big giant door that would flip closed, they weren't that accurate. So as a matter of fact, we used to actually test blood sugar just on urine strips at the time before we got the glucometers. And I wouldn't I wouldn't know at night. But some of that by the time my mom would come in, I mean, I would I'd be twitching I'd be shaking and then unable to swallow chocolate or juice. So they would have to put cake frosting actually in the side of my mouth. But because most of the time during the day my parents would able to we're able to observe and I was you know, more and more in tune with the feeling so I would manage it at the time.

Scott Benner 9:53
Wow. That's fascinating. You also made me think that I have an episode that's recorded with a tie Your mom and her her younger 20 ish college aged son. And they're from Long Island. And they were together on the episode and it was just, it was fantastic. Because she was just, she was as East Coast and and Long Island as you could. And she's lovely. And the kids like mom, you know, like it was just it was great. I can't wait for that one to come out. It really just like wonderful people. It's a great story too. But nevertheless I can I can really like imagine your poor mother like there's no, I mean, you think about all the information that's available now. And it just was really nothing right? Like you said it earlier, you said would you say spray and pray just put it in and hope nothing bad happens. Right and and try to live?

Howie 10:46
Yeah, I mean, there was no card county there was none of that so and that you take the same dose every day. And regardless of what you eat, or what your activity level was.

Scott Benner 10:56
And that's just the best they could do. And so your mom, your mom basically just hoped until it went, it got upside down. And then she she put it back again. Basically, yeah, but she probably tired. Do you think she still thinks about you?

Howie 11:10
Yes, I mean, both my parents are very involved. I mean, great parents, they supportive of all of their kids. So they are obviously involved in my daughter's situation. So my parents are worried about me nonstop. And what's funny is, you know, when you're on a plane and the oxygen mask drops down, it's always obviously put the mask on first before you assist the little one. So that's what my parents always have to remind me because my default instinct is if my daughter and I are both low is to treat the daughter before I treat myself. But my parents perspective is, hey, you need to take care of yourself. So yeah, they nonstop it's it's a perpetual worry when you're a parent of a diabetic

Scott Benner 11:50
were they like knocked over by new technology.

Howie 11:55
It's incredible. So it's a blessing, I think it might it's also a little bit of a curse. And I'll explain that. So yeah, they think Information is power. So my daughter has a plan that she can obviously have a phone and, and watch at school. So I can see in real time what my daughter's blood sugar is text, the school nurse, the school nurse makes notification that sent my daughter down. So that's incredible. What I think the curse part is, though is people are so reliant on technology that they don't recognize the symptoms. So as someone who like my daughter is getting lower and lower, and she's a new diabetic. So that will come with time. It's she's overly relying on the technology as opposed to recognizing the symptom. And sometimes I think that could be dangerous in the short term. So I think that's a little bit of a minute, a minor curse. But overall, the technology has been incredible. It's what they can do now has been really amazing. And hopefully there's some bright stuff on the horizon.

Scott Benner 12:52
Let me get your perspective, a little deeper on that. Is that a problem that you've actually witnessed? Or a concern?

Howie 13:00
fair question. I think it's, it's probably a concern. I haven't No, I haven't witnessed it enough. Because I do see actually my daughter saying I feel low. And I'm reminding her Hey, what does that look like? What does it see? What do you feel like? Hey, what can you see? What can you read? Because my symptoms I have, they've evolved over the years. And I've been able to recognize things later that I couldn't recognize when I was younger. So I'm programming at least asking, hopefully, asking questions, and my wife is doing the same she's very involved in, in my daughter's care, to be to help encourage her to recognize the signs. So it's more of a concern than then, then something I've

Scott Benner 13:40
seen. The reason I asked is because I remember when my son was younger, I would sit him down and tell him about glorious football games where the Eagles scored 10 points and the giant scored three and they beat the crap out of each other for four hours. And no one ever threw a ball over 20 yards and my kids like I would like to see a 40 to 35 game kind of situation I want to see you know, at points, the ball fly over the place. He doesn't think of football the way I think of it. And when I watched football now I think, Ah, just a catch with a bunch of rich guys are having a catch, like, like, when are they going to try to kill each other. And he doesn't care about that. And I just wonder if it's just sometimes you just get steeped in what you think is the way and then you see a new thing and you judge it as not as good as the thing you grew up with, I guess or something like that. Because I hear people say what you say but I never see it. Like, like I do you know what I mean? Like if we can do a time machine went back to 1979 and gave your mom like I'm like, you know, Hey, lady. I'm here from the future. This is a Dexcom and no way would I

Howie 14:49
ever go back to those days. Yeah, of course not. I mean, this it's way way better. This but let me give you an example. Two days ago, my pump dad had an issue and I couldn't and change the cartridge and basically the pump broke down. And ironically, I have another pump. So I'm able to reset and get that done. So then I sat there and thought about my kit, what would she do? What would I do if she was in Coachella in her pump row? What would I do if she is on a vacation? Is this kid going to know how to then go get to Ceiba mathematically figure or a sorry, whatever insulin law to mathematically figure out how much to prescribe, and then say, hmm, I haven't given a shot and 15 years or whatever the timeframe is, let me go get needles, and now how much so I just don't know. I think that's what I mean. So, but that said, I would never go back. That's a stone age as a diabetes compared to what we have today. So if

Scott Benner 15:44
it makes you feel better, my daughter couldn't give herself a shot. And so my daughter's had diabetes, since she was two years old. She's 17. And she's never given herself an injection. But and if she had, she was five when she did it, just tried it, or not even five, three, and was like, I'll give this a whirl. If I handed my daughter a needle right now. And I was like, hey, guess what, we're going back to needles. She'd be like, whoa, whoa, wait, hold on, slow down. Everybody just like, can't they FedEx a pump? You know, like, what's going on? But, but then she do it? The issue Wouldn't she wouldn't just lay down and die. Like she would do it. But so I think that's the answer. I think that, yeah, your daughter wouldn't know how to do that, you know, 15 years from now, if she's never used it before, but she'd figure it out, or you'd help her or someone would you know what I mean? I mean, 100%? Yeah, I get your point. I just don't think it's worth worrying about, I guess.

Howie 16:39
No, I hear you. But that's back to my theme that a kid can never opt out, of course, a guy but of course, they'd figure it out, because you have no other choice. So that's what I mean. It's like, Hey, you got COVID in your line. And it's like, you still gotta take insulin. But so there's not, there's not there's not an off day. So yeah, of course, they're gonna figure it out. Because the other option is not an option.

Scott Benner 16:56
Well, I want to dig into that because I have a feeling like I know where your will go deeper on that idea. But when you say you can't opt out, when you're the parent of a kid who has type one, versus when you're an adult, do you mean that you can just as a person living with diabetes, make a decision, like, I'm not really gonna pay attention to this today? And my blood sugar is gonna get high or whatever I'm just doing? Is that what you're saying?

Howie 17:18
No, no, not at all. No, I'm saying the kid always. They're a person with diabetes always has to be cognizant of that. That's what I mean. So whether you're sick, whether you're traveling, whether so my preparation for a trip is different than my wife's preparation for a trip, I gotta bring a, you know, a vat of stuff. So that's what I mean is there's never an off day for the diabetic I took whether you want it to pay pay attention or not. Okay.

Scott Benner 17:42
Yeah, I'm sorry. I was I was hearing you backwards. Okay. No, no worries. Yeah. So. But as a parent, you feel like, well, there's another person who could just take over for me for a couple of hours, like a spouse or a loved one, or somebody could step in and maybe give you a hand for a minute. And, like, spell you a little bit let you sit on the

Howie 18:00
bench? Oh, for sure. Yeah, yeah. And don't get me wrong. I mean, my, our journey is relatively good compared to probably other folks that I hear about. And we have a lot of support from family and a lot of support from friends. So there's a lot of people that are vested in my daughter's care. You mean, the school has been fantastic. So yeah, I'm not managing this nearly as much as actually my wife is she my wife is on the follow up, like 29 hours a day. So I'm like, I'm not even gonna have her Hi, alerts on leaving care. Let you worry about those. So no, my wife way manages it more than I do.

Scott Benner 18:34
So that's interesting, then. Do you have trouble? Well, let me see how to answer this question. You've diabetes a long time. How long ago was your daughter diagnosed?

Howie 18:45
August of 2020. So just over a year ago,

Scott Benner 18:49
how old was she then? She was eight. Okay. First question, did you have you been worried about her since she was two getting diabetes or?

Howie 18:58
No, ironically, what's the craziest not only have I not been worried? What's also interesting is I didn't even recognize the symptoms when she was when when she was diagnosed. And that's what's crazy.

Scott Benner 19:16
What were the symptoms?

Howie 19:19
So we want a trip to San Diego and typical vacation. I mean, beach vacation. Kid was not perpetually thirsty. She was not constantly going to the bathroom minimum, not at no weight loss. So the traditional sign that lethargic, I mean, we had a beach vacation, we're up late. Kids are jumping on the bed. She did wet the bed in San Diego. I mean, she's an eight year old. It wasn't obvious, but it's like, hey, maybe there's that would have been the first indication but still not enough that I'd be concerned based on all the other externalities. We drove back from San Diego. I live in Arizona, which is a six ish hour drive. And she only had two bathroom breaks despite what we've done. The volume of you know what, we weren't even drinking that much. So you got to think you have water to on the trip back from San Diego, not going to the bathroom a ton. The next morning, a couple more bathroom trips were like maybe she has a urinary tract infection. We took her to the doctor. And the doctor, were actually fortunate because you hear of a lot of pediatricians that are not that in tune with the symptoms. So she tested negative for the urinary tract infection. They drew her blood or they gave her finger prick, and she was 519. And then when my wife told me that her blood sugar was 590, and obviously we knew that instantly, and they've sent us over to the hospital out here.

Scott Benner 20:39
Wow. Okay, so do you have any other kids?

Howie 20:43
I do have a six year old.

Scott Benner 20:45
Okay. Have you done trial on that?

Howie 20:48
No, we did I know that. I've I have heard that you're a big fan of the sponsor.

Scott Benner 20:54
You well, in fairness to me, I've had them on a number of times over the years and just thought they were great to support and then very recently they asked if they could buy ads, but I would have said trial net whether they were paying all right, also they only bought a short run so it's over all right. So this part is getting cut out right? No, I'll leave it in. I've already spent money. I sent it to my kids college or whatever. So but no, I just think it's not that I think you should or you shouldn't I'm just interested in how people think about it. Like would you want to know if your other child had auto antibody markers

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Howie 25:39
So let me emphasize again, this is just my approach and my perspective and understand both sides of it. I personally don't. And because, and I've heard a lot of different debates. Why? I mean, what is it going to do? What is it going to give me what is it information? There's nothing that I can change. So why sit there in the back of my mind? Is it August 11? Is it a couple kids have been sick and hospital runs are highs? And now? So I don't know if I want to add? Because I don't know if there's behavior yet that has shown enough data that it's that I could course correct. So it's information. I don't want to Yeah, no,

Scott Benner 26:15
I completely. I don't judge people on that thought. I think it's people fall into two camps. And I understand them, I would tell you that trial net would tell you that your child's possibility of going to decay, if they were diagnosed goes down significantly if they're in the trial, and they have a prevention study going on that could hold off the onset of diabetes by a number of years. And I think and, you know, plus data for, you know, Tomislav, which is a drug they're working on. And I don't know if you've ever heard that the gentleman who runs that, that company who's making that drug, but it's a really fascinating interview about how he hopes to change diabetes in the world. It's just I can't go into it right now. But I'm not saying you should. I was just interested in your thoughts. So thank you. I appreciate it.

Howie 27:04
You guys didn't use that for your daughter. Right?

Scott Benner 27:07
My son went to trial that Okay, okay. Your son was second. He did not have. He didn't have the antibodies at that time. And they don't retest if you don't have any. So if he's developed them since then, we don't know. But God, you're gonna bummed me out. Make me wonder if my kid's gonna get my other kids. She's our way to move me. No, I'm just teasing. You were the catalyst. You brought it up. I really did. I apologize. I'm trying to push this trial not on me. No, I'm kidding. I'm trying to make it your your problem that I got sad first. Okay, so when you're when your daughter's diagnosed, you look at the world now. But what is the world now to you? So you're using a pump? Were you using a CGM before she was diagnosed? I was okay. All right. So you've got CGM, you got a pump. You you you know the world now around diabetes. If you're not comfortable with the numbers, you don't have to give them to me. But are you happy with your care prior to her being diagnosed?

Howie 28:12
Yes, so my my I was a three, every three months, endocrinology appointments, written to doctors once a year when, you know, I was had enough diabetes. I probably wasn't the best kid diabetic. What I mean by that is, oh, shoot, I gotten to see the doctor. Let me go write a bunch of blood sugar's down in my logs. So I'm not yelled at my agencies when I was a kid were not amazing. I mean, I was probably printed nines, I probably printed 10s. And I shouldn't say that's not amazing. It's just a data point. So I printed scores that were probably most parents would not be that excited about. Since I've been on a pump in 2005. I've never printed above a seven, my agencies are six to six, five or so. I'm probably stricter, I probably micromanage my diabetes to the point where I'm lowish higher percentage of times on my pump, and most people are, which causes me to snap back on the high side, which impacts my agency.

Scott Benner 29:10
Tell me it's my last. I'm sorry, before you go on. Tell me what low means to you.

Howie 29:16
Usually below 70

Scott Benner 29:18
Okay, all right. So you go below 70. And then you correct are you using an algorithm?

Howie 29:24
I correct with with 15 grams of carbs generally. Okay. And a little bit more potentially on how low I am. Okay.

Scott Benner 29:32
And then you bounce later that does that never make you think I'll try eight grams of carbs.

Howie 29:38
Great question. I've never really thought in him back to my point where I could do better if I made even overcorrect. Because when you're the diabetic kid, you were like, you can't get high enough quick enough. When you're the diabetic parent. You set you set a timer and wait 15 minutes. So it's always a do as I say versus do as I do because I'm 40 There's no way to explain what that feels like to somebody. And I thought about it this whole car right over this conversation in case that came up. But so I overcorrect. But I have I thought about the eight grams of carbs to answer. The question is no, it's a great, great idea that I wouldn't be opposed to trying at all.

Scott Benner 30:16
I want to ask you a question, the feeling that you're trying to get rid of, is it visceral, and it needs to go away? So you just like, do you think the more I eat, the faster this will go away? Because does that really correlate like would aid not work as well as 15? Or

Howie 30:30
100%? It makes no sense. You're absolutely right. I mean, and you're not going to go up right away. I mean, we overtreated my daughter yesterday. So it's, there's no logic behind it. Okay. But the feeling is not it's uncomfortable. I don't think it's like I need this to go away. So I've actually almost trying to come to the point where I can trick myself into appreciating it maybe like, huh, so there's people that drink a lot of beer to get tuned up, maybe I can almost trick myself into thinking I had a couple of drinks, which is not really the right way to approach it. But it's uncomfortable, you're feeling you're coming out of your skin. Like if you ran a turkey trot on the east coast, where it's freezing, and your body's warm after the turn, but then you instantly stop and you get hit by that cold air. Right? That's the way it feels. It's like, wow, I'm really uncomfortable right now. And that's the best way I can

Scott Benner 31:21
describe it. It's just a complete quick change to how your entire system feels and direct you just want it to go away. Correct. Okay, do you think being low stops you from thinking straight about it?

Howie 31:35
I have 42 years of experience. So probably not as much as somebody that's new around and back to a do as I say not as I do. Like, I've probably driven a lower blood sugar than I should and I would never want my daughter or anybody that's listening to do something like that. So I I'm uh, I'm of the camp of I'm so which is actually hypoglycemic unawareness is a real thing. But I still feel low in the ad. So hopefully I can manage it quicker than, than some others. But the initial question that started us down this road is I do I am a very diligent care of my, my care. I mean, I I print low sixes which could be better, of course, I go to see a retina doctor on his scale of zero to 10. They raised me a one for zero being the best, in terms of my mind just went blank. What are those called? A Blasian? are what are they called? The shadows of the eye. So I'm ready to really well, no neuropathy on toes or anything like that. So cool. For somebody that was casual in the beginning, became much more diligent later in life. Had a had a lot of had a good college experience had a great adult experience. It hasn't impacted me to the point where I've seen some of the long term effects that have impacted others.

Scott Benner 32:49
Yeah, I said earlier, you're interesting because you're a dinosaur, but you're young.

Howie 32:53
Yeah, I appreciate that.

Scott Benner 32:54
You usually when I hear people's stories like this, they're usually a little older than you. Just because you were diagnosed so young at the right time to hit all these different changes in insulins and technology. You've kind of lived through a lot of the of the lifetimes that diabetes actually, yeah, when I

Howie 33:12
heard that Johnson only gave out like 50 or metals, and there wasn't a lot of it was like, oh, shoot, send them far away.

Scott Benner 33:19
You might be maybe getting an ad or metal and let's hope so. Yeah, no kidding. Okay, so initial thoughts when your daughter is diagnosed? Shocking. Scary.

Howie 33:33
Oh, I was happy. We lit fireworks was awesome. We had a party you should have seen it was great.

Scott Benner 33:38
Yeah, absolutely. What took so long ganging up on her mom. Now,

Howie 33:42
that might have that might that might have been your best question so far. So I will say that's a good question. Except for that one. No, we were. We were dejected, obviously, but we we were way forward to that loser. Are you still on? Did

Scott Benner 33:55
you hang up on me? No, I'm trying to figure out if your response is the same as people who don't have diabetes, just kids are diagnosed.

Howie 34:02
So I didn't go. I don't think so actually, where the anger didn't get the why maybe we didn't have as much of a range of emotions because you have to spring into action. What I think I could have done better is opening up myself to be educated as well, because there's so many things that you take for granted, having that experience that you could benefit from like I didn't really even know what a honeymoon effect was. I didn't know certain things that were important that I didn't I usually undercut the education that the hospital provides, right. My wife had to go through basic card counting when I just want to get out of the hospital and get her home when that type of stuff is very important. So you had to step back a little bit and appreciate the education and pause to understand that not everyone is up to speed of where I was. So I didn't go through probably the ranges of anger and frustration. Really, I mean, sad. But also, I did feel empowered that that I had the tools to help her

Unknown Speaker 35:08
that in that initial

Scott Benner 35:11
education in the hospitals, Were you hearing things where you're like, I didn't know that, or are you just like, wow, this is I know all this. But it's, it's cool that they're saying it, which I haven't feel Yeah.

Howie 35:22
In the beginning, I normally it's like two or three days stay depending on circumstances. And I wanted to test out my Let me test out of this. I know this stuff, I know this stuff. Before I got, I saw what they were going through in the program and all that stuff, I probably had ego and type a went in. Once I sat down and saw what they were presenting, and the food choices and the food charts. The biggest, the biggest awareness to me was that the honeymoon phenomenon and how little insulin, I couldn't believe what a half unit was, and you mentioned that on one of your podcasts on your daughter, that you can't understand what that is. So I was initially in a rush to get out of there and just get this kid Hall. But I, it was invaluable what we got from just the details. And then what's interesting is she was diagnosed during COVID. And I was the one that spent the night just to watch over and make sure and babysit this thing as it goes on and work with the nurses in the hospital. Not that I was adding any value, but you know what I mean? I sat. So then when my wife had to come in, it's like you have to change places in the hospital and do all those things. So they spent a lot of time with her, which I which I also thought was pretty great.

Scott Benner 36:35
Okay, so now your wife reaches out into the world to find information. She's the one that found the podcast, right? Correct. So what would lead her to do that if you've got type one?

Howie 36:49
Issue, huge fan of different perspectives. And so she I mean, there's so and I also same thing is, I'm not that I don't think there's so much I need to know, and there's so much I still can know. And I think that the hospital education made us aware about fundamental diabetes that I was taken for granted. I mean, I was, you know, 43, or 42. And my, my daughter got it. And I took a lot of that stuff for granted. So I am a big from, whether it's JDRF, or whether it's other diabetic parents in the area, or whether it's, you know, information through podcasts, there was nothing like that back before. So I've always encouraged and she's even, you know, self motivated to find that out and learn as much as she would candidly tell you, and I don't like to paint somebody else's perspective. But she would candidly tell you that I because how he made diabetes look kind of easy, I didn't really have to worry about it. And this was like, Oh, my gosh, I can't believe the depth of what this involves. And all the other impacts. It's not just like, hey, don't eat sugar, or, you know, take a shot. There's so many varying circumstances that has opened her eyes. And because of that she's sought information proactively on her own. That's

Scott Benner 38:05
kind of what I wanted to get to. So are you if she's not involved in your care prior to your daughter

Howie 38:13
involved? I mean, you're you can't be uninvolved, but hey, my bloods logo, can you help me with orange juice? Or there's times that or she's recognized, hey, you're low. Do you need something? Do you need something? But it was definitely, much, much, much more casual. Yeah, but no, she was never involved in my palm, never, you know, none of that type of stuff. And we're just observation. Are you okay?

Scott Benner 38:38
Right. And because that's that part is always like, super fascinating to me, because of my perspective, like, the idea that you could live with somebody that has type one and only have like, a loose understanding of it is, it's just, it's so unlike my experience, that it's why I asked the question, usually, I'm just always looking for answers that, that makes sense to me. But I mean, I get it. I don't see why she would be. I just wanted to know if she was like, I'm wondering like, in my mind, like your daughter's diagnose, like, Does your wife step back and go, Oh, God, like, how are we so bad at this? I can't let this happen to my daughter, or were she like, I don't know anything about this? Like, was it a moment of realization for her where she's like, I really don't know as much about this as I even thought I did. The latter for sure. Okay. Yeah. Is has your health benefited from your daughter's diagnosis?

Howie 39:32
I don't know if I have data or stats to measure that. But I, so, um, I don't think I have enough information as to save so so my agencies haven't changed my, my tanam percentages and lines haven't changed. So I can't say it's gotten better or worse than said no. I because one author thing I want to emphasize is we really really, really like my parents in the old days would say hey, like a normal kid like a normal Kids, and they've really stepped back because they don't want to perpetuate that. So it's the same thing as we want to think of my daughter as a kid first, and you're a kid number. So the diabetes is almost like, Hey, you can eat what you want, as long as we track and measure. And she's never hiding food because of how we let her live. Like my other daughter. And so because of that, nothing's really changed. We don't cut our food, we don't do anything differently. We kind of still eat what we we eat when I've always managed that anyway. So I my care hasn't changed that much. Would

Scott Benner 40:32
if I don't know, um, again, the numbers are you can share them if you want, but I don't care. But your variability, your your agency, your outcomes, would you be comfortable? If your outcomes were your daughter's outcomes?

Howie 40:46
What do you want? Yes,

Scott Benner 40:48
you are. Okay, that's 100%. Okay. And so is it fair to say that she's close to you? Are you having luck managing her that way? Or is it harder with her?

Howie 40:59
Yes, I'll give you a couple of things. And also perspective is the physicians that I see are also celebrating my care for my, my timeframe and my lack of complications. So this isn't just that I've been, I've been really paying, spending a lot of time and managing it. And it takes work, but it's definitely you get a good return. So the physicians have supported that. And I would definitely be happy where my daughter is at. And one other thing to think about is the margin of improvement between a six and a seven. Supposedly, an agency comes with such significant risk of lows, I personally still would rather be a six. So I do try to I tend to try to run low. My daughter hasn't printed above a seven since she's been on the pump. So she still has, you know, obviously, there could be some, some measures of improvement. But she's been seven, since she's been on the pump. And she's only been on a pump for eight months. So I think she went on fully in March of this year, because and which is accelerated, by the way, they let us on a Dexcom quicker. And they let us on a pump quicker. Probably because of my experience. Yeah,

Unknown Speaker 42:06
I would imagine. Do you guys Pre-Bolus meals consistently.

Howie 42:09
So back to the ability to always learn something? I do. Yes. We do her as well. It's actually come back to bite us because she's not eating as much as we put in sometimes. Yeah. So then I have to over treat and say, Hey, you're not eating lunch? But hey, enjoy the Skittles. But I do Pre-Bolus Yes. Okay, and that I've seen an improvement there. Because just like that modest improvement of it tends to tick up. So I do take about a Bolus 15 minutes early.

Unknown Speaker 42:40
Cool. That's excellent.

Scott Benner 42:42
So I have other questions. So the first thing I was gonna say just just to kind of lean into what you just said a second ago, if she's not eating well, you could do an extended Bolus, and then bail on it. If she doesn't eat that interest. That's one way to do it. Like so brilliant. So you could do an extended Bolus, but over only over 30 minutes. So you still Pre-Bolus say her meals, five units, which is probably heavy for her, but I don't know. Say it's five units, you do five units put in, I don't know 50% Now and the other 50% over 30 minutes. So by the time your Pre-Bolus is over, she's got some of it. You know, I mean, you could work with the numbers and the time and stuff like that. But you could get it to a point where she's got some of it enough that the Pre-Bolus is going to work and she won't spike, but that you could bail on the Bolus if she doesn't finish the food. Oh, that's brilliant. That's one way to do it. You could also I mean, you could Bolus some and double her basil and attempt basil to kind of make up the rest and then bail on that if you wanted to. Like there's all kinds of ways to like kind of futz with the the insulin to try to make it to put it where you want it without it making her low later. But what I'm what I'm super interested in is that if your wife's so your wife listens to the podcast, you just listen to some to prep yourself for coming on the show. So it was your wife's idea for you to come on the podcast.

Howie 44:07
Do you want to keep shining a light on that? Yeah, yes. Yeah. No, it's fine. I actually wanted to Yeah, so my I thought of the patient did parent I was like, it's a pretty good story. She motivated, she's like, Look, you

Scott Benner 44:20
got to listen to this. You got to talk to this. There's a great story. So my wife is the motivator to come on here. Yes. And so she wants the story. But do you think there's any part of her that wants you to hear what I think about management? Of course, okay. All right. Okay, because if she's listening to the podcast, and you're saying six, almost seven is fine. I'm going to tell you like my daughter is 17 her a onesies been between five two and six two for eight years. She eats whatever she wants, just like you we don't mess with food. Except I probably just have a different idea of of where her blood sugar should sit stable than you Do that's pretty much it. But I'm guessing as far as the number goes not to say one's right or one's wrong, so when you listened to get ready, you kind of listen to protests and stuff like that. Like, what did you think when you were listening? Do you think you think I was an idiot? Or did you like, like what you heard somewhere in between?

Howie 45:19
I definitely didn't think you're an idiot. I was I was very appreciative of, of the variability of what your topics are. So there's no way that a non diabetic versus diabetic wouldn't find value or information based on the variety of topics. I also thought the information that you're giving is usable. So even if you get if you think in one hour, if I got three pieces of information that's invaluable. And the return on that is great, just what you gave me right now about bolusing and the extended Bolus. So I'm a huge fan of learning and trying to understand information. So I liked one the variability to some of the specific tips with I thought the the fat that with it was bolusing. For it was the pro tip number 430.

Scott Benner 46:07
Yeah, Bolus for fat and protein.

Howie 46:09
Right. So I think that's huge too, which is an extended Bolus feature. Some pumps have more variability or flexibility in that, but the ones that are going to resonate with me are the specific specificity on how can I get better from a six five to a six? Oh, I think that would be that's valuable.

Scott Benner 46:25
Yeah, I'll tell you, there's another fat episode that if you enjoyed that, you'll like I'm looking at the number for you right now. On my, it's weird to do some, it's the 471. It's called bolusing. Insulin for fat. Okay, if you like that pro tip, you should listen to that. Because that'll give

Howie 46:45
it's with you. It's with you and your educator on that one, right? Oh, no, on

Scott Benner 46:49
this one, it's going to be me and a mom from Canada. Okay, writes a blog called waltzing the dragon. And she's, she'll go through exactly how you can count the fat grams and make a Bolus to counteract the fat rise. It's fascinating. And it works really well for most people.

Howie 47:09
Yeah, that's the stuff that I have a hard time with. Certain, you know, Asian foods, that with the sauces, I usually kick up in those chicken. I always miss counts, things like that. So anything that's gonna give me tips and improvement on mitigating highs from foods that I tend to eat all the time? Yeah, would be very helpful. I'm

Scott Benner 47:27
gonna guess. And if I'm wrong, you'll stop me. But I'm putting myself out on the branch here. Your high alarm on your Dexcom set at like 200.

Howie 47:37
Let me even look, I think it's 181 80 was

Scott Benner 47:41
my first guess I should have went with my gut dammit.

Howie 47:46
Yeah, it's 180. Okay,

Scott Benner 47:47
if you set that at 150, you're able and SEO go down.

Howie 47:54
But here's the thing. Am I supposed to then jump in? I don't know what which pump your daughter's on? assuming she's on a pump. Right? I hear mixed reviews? Where? If I'm going to keep jumping in to overcome the control IQ? Will that will that change me to the low? That might you're saying that control IQ will kick in earlier?

Scott Benner 48:12
No, I'm saying you're You paying attention is a big deal. So I know you're using control IQ, and it's what is its target, like 112 and a half or something like that. But if so, if you're setting Well, listen, we'll talk through it for a second. So when you are completely away from food or meal insulin, like overnight, where does your blood sugar sit stable?

Howie 48:39
So this is my daughter, my son, my wife brought this one up to me. It's like, it's perfect. It's like incredible. My wife said that you were talking about this not too long ago. It's at 100 ish. I mean, it's hard to see right now because I'm looking at the pump instead of the app, right? Because I'm on my phone, but it's close to 100 or low 100.

Scott Benner 48:55
Okay, are you in sleep mode? When you're doing that?

Howie 49:00
I don't change anything. My Bolus, my program is changes in the middle of the night. But I don't actually go on to sleep mode automatically now.

Scott Benner 49:07
Okay, so I hear from people that sleep mode can be a little more aggressive. And so if overnight, just think about this for a second, if overnight, your blood sugar sat at 85 or 90, instead of 100, your agency would probably drop like point seven.

Howie 49:24
Like just All right, that's easy. So that's interesting. So you're starting sleep mode or your suggestion is to start sleep mode potentially right before obviously you go to sleep and mine is going to be tighter in the middle of night. Yeah,

Scott Benner 49:33
so my daughter loops, so she has the do it yourself algorithm right now. But we're going to try on the pod five when it comes out too. But the but the control like cue from what I understand from people, so I don't have it. But from what I understand for people sleep mode can be a little more aggressive. And so there's a way that people use it. Some people stay in it 24 hours a day to kind of Like, keep the algorithm, I don't know, tight again, I've never again, I've never done it. But, but so like, overnight last night while you were sleeping at 100, which by the way is magical like, and especially to somebody I should say who's had diabetes for as long as you have who's lived through so many different iterations of diabetes, it must just be amazing to you that there's an algorithm like cutting your basil back and keeping you from getting low, like it must be magical and but the one my daughter's using right now was a little more user defined. So last night while you were sitting super stable 100. Overnight, Arden was sitting super stable at five overnight. And then the next thing I do that you probably don't do is I have tighter tolerances on her CGM, so that I'm so that we're aware of her blood sugar. So the way I think about her blood sugar is, I think, my lowest set at 65. I'd prefer for her not to get under 70. But she doesn't really, honestly, that doesn't happen more than a couple of times a month. And so, but her high alarm on my phone is set at 120. And on her phone, it's set at 130. And my theory behind that is, the sooner you know that you're going up, the sooner you can make a correction. And when you make that correction at a lower number, you use less insulin, when you use less insulin, you have a lower chance of having a low blood sugar later. So instead of waiting till you're 180, and going, Ah what happened here and having to put on a bunch of insulin, which might cause a low later, which might cause you to eat 15 carbs that might cause you to go back up high. Again, why not find out at 120 that things are a little askew, and just nudge it back again. And then it's this one little thing you do? It's over. And then you skip the hour and a half where your blood sugar is going to 180 that you don't know it because you're not getting an alarm, and then all the rigmarole that comes afterwards. So that's how I think of it.

Howie 51:59
You're under reset, right? The issue is, is what's funny, is I actually, when we started I talked about micromanaging diabetes, is because I tend to try to run them before they hit up that high when I was always like, but then I was educated that you should try to let control IQ run its course. But I would rather try to tighten it up myself and front run it, which is exactly what you're saying. Yeah,

Scott Benner 52:22
screw that noise. I mean, I love algorithms. I think they're all terrific. But they need help. Yeah, like it's you know, you take control like you as an example. You go out right now find a feral type one walking around, who's you know, a one sees nine and a half. And you know, they don't know about pumping and CGM. You slap a CGM on them put a control IQ on them turn that thing on, their life gets immeasurably better. And if their blood sugar has to go up to 180, so that the algorithm can work and bring it back down. It's still it's such a an amazing improvement for their life. But if you're a person who's talking about like, I want my a one C to be in the fives, well, then you got to figure out how to work with that algorithm. Like your daughter is going to want to have a baby one day maybe, and her OB is going to tell her that hurry. One scene needs to be five to do that. And yeah, that makes sense. Yeah. And I guess my point is, is that if my 17 year old daughter can have a five, five, I think that was our last one. And I can tell you that in the last four days that she's had a ammos bowl for lunch, if which in your local so you probably know what that is. It's basically Mexican fast food, you know, with a ton of like, rice and sour cream and all these things that are a problem. Last night, she had a salad for dinner, but I think it's because she exercised. So she was like, I'm gonna have a salad. But you know, she's also had pizza gone out for burgers with her friends, like she eats as, as you know, quote unquote, normal as you can possibly imagine. And the only thing that I do differently than other people is we react sooner. And we take advantage of overnight hours. And that's your five a one say like you listen to those protests again. And just adjust your thinking a little bit like I know you think like, it'll there'll be more lows, but I see fewer lows than when my daughter was bouncing around before because the bouncing around to me is where the problem really happened. So sometimes people don't Pre-Bolus Or they don't understand the impact of the food they're eating. So they use too little insulin. They end up spiking up. Eventually they get tired of it. They correct that spike in the middle of the spike working their food digests out of their system. There's nothing left to hold up the blood sugar, they come plummeting down, they panic, they overtrain they go back up again. And then they know some people chase forever. Like no kidding. Like you can see I've had people send me graphs that just go on for days where they just go up and down and up. They just they're out of sync with what's happening. They don't recognize that insulin Use now isn't for now it's for later that kind of an idea. And, and they just chase forever. But once you find stability, and you can dial in your Basal, and that insulin sensitivity and create that stability to lower and lower number it you don't have once your settings are right, how you don't have any more of a chance of being low if you're 85 All the time than you do if you're 120 all the time. But I do think you'll be low more frequently if your blood sugar's frequently go over 160 at a meal.

Howie 55:32
So I'm just going to change my high settings on the on the control IQ to 150. That's what you're saying, That's it, you're out now at least see what that looks like for the next month or two.

Scott Benner 55:41
There's just yeah, there's a really interesting study, there's someone from decks, there's a scientist from Dexcom, somewhere in these 600 episodes, that the tighter your tolerances are on your Dexcom, just meaning that the more you pay attention to your blood sugar, the lower your a one C code drops, and the better your variability gets. And it's just because acting sooner creates a an environment, like I said earlier, where you use less insulin. And when you're, you know, if you don't get high, you know, you won't get high, and then you don't get low, and then you don't chase. And it's just a really simple idea. Really, it's for sure, yeah, the way I think of it, and it's in one of those episodes, somewheres. You know, when you're driving down the road, and you find yourself veering a little bit, you're just kind of drifting to the right, you don't turn the wheel 180 degrees to the left, you just nudge it back a little. You don't I mean, if you were to oversteer, you'd end up in the other lane. And then you'd be like, Oh, God, I'm gonna hit a car, and then you'd be oversteering the other way. And then that's up and down, up and down, up and down, except, you know, side to side, because you're driving. But if you just make these little bumps and nudges to the wheel, if you really think about how you drive a car, most of your hand movements are almost imperceivable, to your eye even, that's what you should be doing with diabetes, is just making the small adjustments along the way. And I think as the algorithms get better, and hopefully all of them like every one of them control, like you whatever Medtronic Scott coming out on the pod five, when it happens, I all these companies like I call on them personally, to go back to the drawing board, create a lower target, and go back to the FDA and get it through the FDA. Because while these things are amazing, and they're going to help a great number of people, they're not going to be as valuable to a person like me. Because if I slap an algorithm on my daughter, I mean, are you telling me I gotta hurry once he needs to go up a full point so that I can have an algorithm, you know what I mean? Like they need to, I think it's imperative for them to spend some money and some man hours and some time all of them to get the the goal target down lower, so that the FDA says, You know what, let's let the user say, I'd rather I'm shooting for 85, or I'm shooting for 90 or I'm shooting for 95, like let the user make that decision. And then the algorithm should support it.

Howie 58:03
So your will be correcting at 150 Just for the sake of the argument to make it easy to you. And then it's going to 180 and it's still continuing up, you're not adding correction then because you don't want to stack Do you let that unit or ish work to bring down or would you correct again,

Scott Benner 58:18
I believe you're looking for an episode about stalking, where I'll tell you it's not stalking if you need it. So if you would have made a great Bolus, you never make it to 150. And so if you made it to 150, your Bolus wasn't right. Like there's a, you know, when you see people's like super flatlines. Online, you're like Jesus like that. Like you, somebody puts a graph up in there, like there's pizza in here. And you're like where they can't even see it. Like that's somebody who really knows how to Bolus for pizza or Chinese or just a regular meal. So my, my assertion is, I'm not shooting for a solid flatline. Like there are people who do that. I'm not one of those people. I think that I've worn a CGM, and I don't have diabetes, and I've seen my blood sugar go up 121 3140 for a meal, I've seen it hang a little bit and come back down again. So in my mind, 140 and it comes back on its own doesn't get low. Sorry with me. I know I could have done better, but it's okay. 160 to me is a high blood sugar. And in my mind, 180 is a spike like I've significantly screwed up if we're 180 or above is how I think about it. So my overall concept around it, and I don't abide high blood sugar. So if a high blood sugar goes up, I bring it back down. I'd rather stop a low or falling blood sugar than fight with a high one. I will tell you that that sentence is at the backbone of how I think about diabetes. I'd rather stop a lower falling blood sugar than then then fight with a high and I think that as you get better and better at bolusing for meals, the frequency of the highs goes away which takes away the frequency of the lows as well. It's all it's all timing and amount. You just have to have the right amount at the right time. So even though your algorithm if I'm remembering control IQ, right, they all work about the same way, you make this big Bolus, and then it leans on the Bolus and takes away the basil. Is that right? Yeah. And so if you mess up, if you don't Bolus enough, if your meal ratio is not heavy enough, then as soon as that basil goes away, you know, the carbs are like cracking their knuckles and like licking their chops to like, I'm gonna win this, and you know, it starts to go up. But if you had a, if your meal ratio was right, and you Pre-Bolus well enough, then that amount that you put in should cover the basil needs and the meal needs. And then the algorithm should be able to say, Okay, now is the time to put the basil back on. So if you're seeing spikes, I would look at your meal ratio. Does that make sense? Like you're you're in for sure. Yeah. And I would be as aggressive with the Basal is like, could be, I don't want lows, but I want to sit as low and stable as possible. Without the, without the algorithm cutting out all the time. You know what I mean? Like you want the algorithm you want the base, it'll be able to run. And for the algorithm to come in when it needs to, and add a little or take a little like, you don't want your basil to be so heavy that the algorithm is always taking it away. So there's a somewhere between insulin sensitivity basil, and meal ratio, there's a balance in there, where you'll find kind of perfection. And then after that, it's it's understanding the differences between foods, it's understanding that you, you know, I don't care if you, you know, pour a bowl of Frosted Flakes, and the box tells you it's 35 carbs you need, it needs what it needs. So there are some foods where you have to ignore the carb count and Bolus, you know, for the impact of the food that you know is going to come and there are some there are some foods that you can rely on your carb count, and it works really well.

Howie 1:01:52
Yeah, chicken foot back to that example. It doesn't matter. I mean, I get like 140 grams is still gonna be

Scott Benner 1:01:57
Yeah, did you guys, I don't, I couldn't even begin to tell you when my daughter was growing up, like, you know, Chinese food, like, I don't know how to count carbs in Chinese food. I'm not measuring it. There's no accurate carbs. Now, what I learned was, my daughter's Chinese meal needed a Temp Basal increase of about about 180%. For three hours, she needed about a 20 minute Pre-Bolus. And it and I had to be and there was a number in my mind, like, I didn't matter. I just knew it was like 15 units. You know what I mean? Like, I never even bothered with it. I just learned from historical like, I go on the idea that people pretty much eat the same every time. You don't I mean, like, you're not like 100% Yeah, it's not like how he's like a one slice guy, one Friday night, and the next Friday night, he's like, I'm gonna have seven slices of pizza, you're like you're a two, or you're a three, or you're a one like, you know, you mean, so you kind of learn the impact of that food. The simple way I think about it is if you Bolus for a meal, and you spike and stay, and then it takes, I don't know two more units to bring it down without making you low, the next time you have that meal, I don't care what the carb count says those two units from the correction belong in the initial Bolus. Because that's what that meal takes for you, aside of what you're setting, say, you know, your settings might work great, and all these other circumstances, but this one meal, they don't. So stop fighting with it. And just it's common sense, put the two in with a meal, and don't have the spike.

Howie 1:03:31
In back your point about the algorithm. It's like, I don't know if this is still the case. But Medtronic, you could change your active insulin or insulin on board. Were Tanna, when you're in control IQ. It's five hours regardless. Yeah, that's even an impact. Yeah, they're

Scott Benner 1:03:43
all different. I mean, look, right now, I haven't used on the pod five yet I am i They're a sponsor. It's not why I'm saying it, I'm saying I really want to use it because loop, you have to use this little connecting device with loop called a like a Riley link or an orange link. And my daughter does not like to carry it, it's an extra part on the pod is going to print the algorithm right on the pod. So you'll literally be able to walk away from the controller, and it'll and the algorithm is going to work fine with loop if you get away from your phone, because the algorithms on the phone, if you get too far away from your phone, or that link breaks, then the algorithm stops working. So I want on the pod five to work for my daughter very badly. And we're going to try it. But it's going to lack some of the user defined ability that the do it yourself system has. And you know, right now my daughter's target for her algorithm is I think it's 85. And so the algorithm is trying to get her to 85. And I mean doesn't always work. It does a good job, but it also works like other algorithms like she's she's been getting this kind of like, I don't know what it is like excitement thing when she goes to school in the morning. And the algorithm kicks in and tries and tries and tries and holds her about at 141 45 which is great. Like you know what I mean? And then She'll when she leaves school and that that kind of like excitement goes away, it comes back down again. But we've been experimenting with different boluses trying to Bolus we're trying to Pre-Bolus the excitement she gets when she goes to school or anxiety. I don't know what it is exactly. But you know, her blood sugar rises in the morning. And so we've been working on different ways to kind of fool the algorithm because she's not taking in carbs. So if you just Bolus for carbs, then it's going to, you know, we're if you just make like a straight Bolus, I should say without putting in carbs, it's going to take the basil away, because it's going to suddenly think she has too much insulin. This morning, we tried to Bolus for a few carbs to see if that would work. It didn't. Tomorrow, I'll try to be more aggressive with it. And try to get ahead of it. But like, in my heart, I'm looking at my daughter's blood sugar right now. It's 142. And it's not upsetting to me. But I'm not just gonna look at it. You know what I mean? Like, we're, we're gonna we're gonna move that number. And so while you and I were talking, I texted her and I said, you know, and and to make a Bolus, and she did. So she. So what we did here to try to like get around the algorithm is we Bolus three times her Basal rate. So her Basal is about one. So she just put it in blindly three units, because I figured she needs about a unit and a half to move the blood sugar. And she needs about a unit and a half to cover when the algorithm shuts off the Basal because we've just put in a blind three units. Does that make sense?

Howie 1:06:30
Yeah, for sure. Yeah. So it sounds like you're mad, it's back to your My question. Your question to me about my wife and me, the care and the attention it's putting here, it sounds like most of the management's relying on you.

Scott Benner 1:06:43
Well, in certain situations, like you're gonna have a hard time talking a 17 year old and thinking they have to Bolus a 140 blood sugar while they're at school. You don't I mean, like, it's, and I don't see it as it's funny. I don't see it as micromanaging. I see it as managing, like I, you know, if if people want to say that, you know, oh, my kids blood sugar goes up to 225 at school, and I don't micromanage them. I mean, all right. But that's like a seven and a half a one C at once he like, that's not micromanaging. That's, that's management. Like that's what diabetes requires. And so what is happening over the years is that while I make these decisions, she's always involved in them. And it's my hope and desire that she's just kind of learning as she goes. And then the next piece is going to be to get her to want to do it consistently. And that I don't think is something you teach somebody like I think that's maturity. So my idea is that she has the tools. She seen them used, she knows when to use them. And now that next piece is, is the hope that she'll want to, because I can't make her. You know what I mean? So if you're saying my art, like, would Arden Bolus for a high blood sugar if I wasn't around? She would. But would she think about it the way I think about it, I think to your point no, because to your point earlier, right, like I I'm her parent, I probably care more about her than she cares about herself. Just like your mom, you know what I mean? For you and you now for your daughter? For sure. Yeah. So I don't know, man, I see it as a slow burn. Like it's, it's gonna, I think the worst that could happen on an algorithm is that if my daughter, like completely flaked in college, maybe her a one C would go to like six and a half. You know, I wouldn't see anything terrible about that. I know, she wouldn't sit around and stare at a really high blood sugar. Like she doesn't want to feel bad. You know. So once she's up at 180, she's not going to feel good. Just like you still feel a little hinky at 80 Because but if you drew yourself down a little a little that would go away eventually, I think. Yeah, I would imagine. Are you having fun?

Howie 1:09:04
Yeah. 100% I was actually going to also ask you the fact is the wife and she also get involved. So that was another question that you asked me,

Scott Benner 1:09:13
oh, my wife is less involved than I am. But her job is more intensive than mine is. So during the day, my wife's like gone in like very confusing, long legal documents and on phone calls, running meetings with a lot of people my job allows me to kind of like look up more. And plus, I was the one who started it out. Like I was a stay at home dad when my daughter was diagnosed. So most of the informations in my head. So I still see my wife like asking questions and then learning along the way. But the truth is, she's a bright girl. Like if I just disappeared like if Thanos snapped and I was gone. It would take my wife about a day and a half to figure this out. And to put everything into practice, plus I left behind a roadmap for so she could just, that would be the ultimate indignity. If she had to listen to the podcast. She would be I

Howie 1:10:09
mean, you're selling yourself short yet to drum up an hour and 12 minute conversation with a complete stranger. No preparation is pretty good. That's not that easy.

Scott Benner 1:10:16
Dude, I'm great at this. But don't tell people. It's seen seems in my list. You don't? Yeah, you don't want to show off? Oh, no, no, nothing like that. I don't want to I Yeah, no, I mean, listen to the way I see these things. As you come on, you are who you are. And then the conversation pulls out the story. And that way, it's a nice, it's a real conversation, like you and I are just getting to know each other. And, and that that's what makes it listener. But like, if you were to come on and start reading a bulleted list, people would be like, No, thanks. I'm good. You know what I mean? Not that you would do that. But to me, it's, it's not smart to have it so planned out that it feels stilted, is usually our authenticity. Yeah, just, you know, just do just do it. Don't be sorry. So is your wife going to be happy with us? Have you done what you were sent here to do?

Howie 1:11:11
I mean, you tell me how many It depends. I mean, how many more sponsors can we sell? Do you think we can do a good job? Let's take this thing to the streets.

Scott Benner 1:11:18
I like Absolutely. I like how I got an email from her the other day like she was your mom. She was like, it was almost like my house is coming on your show. And I want to make sure

Howie 1:11:29
that I mean, I

Scott Benner 1:11:31
figured you picked her and you were like, I want to be ready for this. Like, what do I do? Is that how it went?

Howie 1:11:36
Preparation is the godmother of execution. So yeah, like to the you saw the beginning, like, let me produce the show. You're for the guests. I got the questions. Don't worry about it. Yeah,

Scott Benner 1:11:46
I know. I look like I don't prepare. But I've been preparing to do this for 20 years. So you know, I'm good. The Congress, you

Howie 1:11:54
don't get to 590 shows by not being prepared. So by mistake, at least that's what you're up to. Now, I don't know what you're up to. Before pre production.

Scott Benner 1:12:00
Yeah. Oh, I have the I mean, if it gives you any feelings like you won't come out for six months, at least. Really? Yeah, I have probably 6065 pre recorded shows that haven't been up yet. I record Wow. I recorded like at least three days a week.

Howie 1:12:19
And then I would imagine there's some people that don't make the cut.

Scott Benner 1:12:21
No, never happens. It's so funny. This comes up all the time. I have I think my number I don't know the number even one time in the very beginning of kind of gender fluidly being very public. This person this girl came on and talking about her partner made the partner upset because they were getting ready to travel overseas. And she was worried that someone would recognize her from the podcast, and she didn't want trouble. So that's a great episode nobody will ever hear. I once did an episode with a young girl with type one who in my best estimation had some sort of a breakdown while we were talking. And I I began to talk to her like she was my daughter. I continued the recording so that she could share it with her mother. And so that's never been out. I was I once recorded with a person whose microphone was so bad that it just didn't work. And there was one time in the middle of a conversation that the conversation took such a strange turn that it made both of us very uncomfortable, and we just deleted it when it was over.

Howie 1:13:27
You cut it you're like man, my recording cut out. That actually looks funny. I hope there's no the last one I heard was when you're like I said you were yelling at the lady that had a woodpecker in the back. I think that was the Canadian lady actually yelling at her. What do you do? You're like, Ma'am, can you fix your microphone? And she's like, Oh, I'm sorry. I was like it's pressing against your shirt.

Scott Benner 1:13:46
And she's like, it's a woodpecker. I'm like, it's not a Woody Woodpecker. I would think that was delightful. The last one was really crazy because I was talking with a person, a woman in her 30s and we were having this like loose, happy just like jokey conversation. It was a lot of fun. And halfway through it, she just kind of took this great left turn and talked about a sexual assault like out of nowhere. And I did not it was hard I didn't I didn't adjust quickly enough. And it just got I mean like literally like imagine if you're telling knock knock jokes with people and a half an hour into it. Somebody's like I was date raped. And you're like what, like it just no transition was very, very odd. And the rest of the I tried to pivot. And I thought I did. But even as look at backing on there was a couple of just uncomfortable moments in the middle. And it ended and she's like, I don't want anybody to hear that. I went I agree with you. I was like, I'm gonna delete it right now. And I just did and there was nothing wrong with it. It just was. I don't know how to put it it was it was just very awkward and strange and it didn't do justice to the to the topic. All of a sudden, you know what I mean? Like, in so those are the only ones that I've ever, ever not shared with anybody.

Howie 1:15:07
And it's true. It's like, do I have to report this? Um, I don't know what's going on here. This is not exactly what I was

Scott Benner 1:15:12
prepared for. It was just very strange, you know, like, and it's like, okay, like, I completely agree with you. Like, let's get rid of this. It was nice to meet you. I'm sorry that this went awkwardly, but I don't know what happened. I can never decide. I never asked her. And it was just wasn't appropriate to ask her like, Did Did she just get emboldened and blurted out? Or was it just an in artful, you know, you know, injection of a different kind of information? Or was it that we were so joking along that it took me so by surprise, I don't think the next thing I said was appropriate. Like, do you know what I mean? Because I don't even know if I knew what I was saying at that point, like, so I don't, you know, if you've never made a podcast, it's your brains always a little ahead of what you're doing. Because I'm listening to you. I'm also formulating a question. I'm also trying to imagine where the conversation is gonna go. Like, I'm doing a lot while I'm talking. And I think my brain drifted ahead of the conversation. And we basically went from like one thing to something drastically different. And I just didn't pivot fast enough. And it was just I don't know, anyway, those are the only ones like I've never, I don't hold on. I think everybody's interesting. I love hearing people's stories. You know?

Howie 1:16:27
That's good. I mean, it shows it shows that you're, you do ask good questions. And it's, it's not pre programmed, and you lean into the conversation. So

Scott Benner 1:16:36
I thought that's what you were able to do. Did we miss anything that you wanted to talk about? Is there anything left on that paper over there? That's funny.

Howie 1:16:42
No, I think I'm absolutely happy with hopefully, what we got to share out, you know, I wanted to be cognizant of there is one thing is the, the second kid that is not the diabetic, and being very mindful of the potential not getting attention. And what I mean by that is, so for example, if one daughter is has a low blood sugar, and the other daughter wants to read to me, the tendency is gonna go to the daughter with a low blood sugar. So the perspective of the other kid is very, very important. And I also mean by that is, I've seen my sisters, for example, have to deal with, you know, we got to cater to how we because of circumstances. So it's almost like my sister's adversity is not allowed to be brought up, because it's not as drastic as mine are. So I think that's something that one eight actually add unnecessary guilt to the diabetic, because it's like, no, you can have adverse, so you can have problems, too. It's not a scoreboard. Yeah. So I think that's what it is almost like, you can't convey that your sister or somebody shouldn't have something difficult, because it's not as difficult as what you have. So that's just something to be mindful of, is not reinforcing that as a parent. And being mindful of the nondiabetic kids perspective,

Scott Benner 1:17:57
I like to to how you, you spoke pretty clearly earlier about not wanting to restrict foods or say things are out of balance, I think, a good relationship with food is incredibly important. It's so easy to create a eating disorder around type one. So I love the way you're thinking about that, that we do the same thing here. You know, I don't, I want to say like, I seriously mean this, I don't, I don't care how people eat, like I have a whole series of how people eat. It's literally called how we eat. And people come on and talk about all the different ways that they eat carnivore, you know, flexitarian, you know, all kinds of different stuff. And I just think people need to understand how insulin works. And once they understand I went somewhere, you go, you know, God bless, like, go eat any way you want, you know, but I think it becomes a problem. If people run to an eating style in lieu of understanding how their insulin works. You know what I mean? Like it just absolutely, yeah, that's kind of how I think about it.

Howie 1:18:55
It's the folks that work out don't have the proper diet, don't expect the same type of result. And so you have to understand the impact of the insulin.

Scott Benner 1:19:02
Yeah, you just need to know how insulin like whether you're gonna eat a low carb meal, or fish or all vegetables, or, you know, you're gonna go to Burger King. Like, I just want you to understand how the insulin works. And then once you do that, you should go live your life, you know. But But yeah, but I do. I think that, especially when kids are growing up, like, if you tell them like this, you know, if you scare them, like, we can eat this, you do run the risk of, you know, it's a risky thing to say to a kid, like eating disorders or are not. There been a lot of people on here that have had them, and they're, they're super serious and very difficult to get out of once you're in. And, you know, it's just it's something to be aware of, too, so I liked

Howie 1:19:47
and even short term, your kid may sneak food and not take insulin to cover it. So even if they don't, if that doesn't impact, you know, the eating disorder side, which is obviously very, very, very difficult. It's even the short term issue is like, oh my gosh, Let me hurry up and eat this. For my parents see,

Scott Benner 1:20:01
yeah, well, that's how those that's how the disorder start, like I have to hide it. I can't tell people won't take insulin for it, then when people learn they can manipulate their insulin to lose weight that becomes incredibly dangerous. You know, there's, there's, there's a ton of different reasons why you want to build a very normal relationship with food with with diabetes, for sure. Healthy food, like, Listen, don't get me wrong, if you asked me to make a decision, if you're eating McDonald's every day, I think you're doing something wrong. Like if you're asking me from a personal perspective, but again, if you're eating McDonald's every day, and that's what you want to do. I think you're probably making other health ish decisions that are poor, but I still want you not to have a bunch of spikes and lows later, you know, I mean, you don't, you don't deserve poor diabetes health, because of your eating choice. I know that seems disjointed a little bit, but I think you should eat healthy. But if you're not going to, like, you know, it's not a perfect world, I can't We can't make everyone do exactly the right thing. You know, the best thing for them, so if that's going to happen, they deserve to know how to use their insulin. You know that that to me is just makes sense. But

Howie 1:21:12
absolutely diabetic and non diabetic should eat healthy regardless. So yeah, 100%

Scott Benner 1:21:17
but if you're not, if listen, if you can't visit a reason why you can't I mean, maybe it's money, maybe you're buying processed food, because it's cheaper. Maybe you're you know, maybe have a food addiction, maybe you just don't know any better. You still you don't deserve to be wandering around with a 400 blood sugar because of that. So anyway, that's how I think of the podcast in my heart. It's about using insulin. Yeah,

Howie 1:21:39
no, I appreciate that. That's awesome perspective. And I'm glad my wife encouraged me to, to pay attention and listen, and obviously the dual benefit of one learning something and then to showing the the resources that you provide to the 18,000 plus followers.

Scott Benner 1:21:54
Well, that's just in the Facebook page. I've learned that a lot of people listen to this podcast. So it's the weirdest thing is that apple won't tell you how many followers you have, like how many subscribers? It's the one thing they won't tell you and most people listen on an Apple product. Like a great knowing. Yeah. Is it will Spotify is the next most popular one, I think. No, I mean, it's annoying. You can't get the data. Yeah, I don't know why they won't share it with the the people who make the show. So you get downloads completion, like how I know how long people listen, on average, which I'm in I'm incredibly proud of how long people listen to the episodes. But be a you don't get an exact number of people I did you know, it's funny the other day, Spotify does this like thing at the end of the year where they tell you like your most listened to songs. You're most listened to podcasts and people have been tagging me, you know, like your my my number one podcast and one woman had 12,000 minutes of listening in the last five months. And I was like, Oh my God, that's a lot. And I did the quick math, I was able to divide 12,000 by 60. And she she listened to about 200 hours of the show. So my assumption is let's, let's say she downloaded 200 shows in the last five months. In the last five months, the show's had over a million downloads. And I thought of her as a person who listened to a lot. So then I was like, well, is everyone listening that much? Or they're just way more people listening to that? I think because they everybody can have listened to 200 episodes in the last five months right now, but doesn't make sense. So it's just it's an unknowable thing for me. That's That's it. I don't even care. But I would tell you there's a lot of people listening this the podcast this year 2021 is going to have over 2 million downloads just in the calendar year.

Howie 1:23:47
And it's actually hard to find the old ones. So that was challenging is on at least I'm very inexperienced on just Apple products in general even though I have one. Yeah, so it's even hard to find ones beyond I think past the four hundreds on yours. So scroll,

Scott Benner 1:24:02
scroll, scroll. You gotta go to the setting that says see all podcasts I think and then just scroll like a lunatic.

Howie 1:24:09
Yet for some reason mine stop mine. Unless I'm doing still don't have my wife show me. Yeah. I liked your Hearthstone. I liked the humblebrag 18 Oh, that's just on the Facebook page. That's pretty. I like that. Oh, yeah,

Scott Benner 1:24:19
that's not a humble brag. I'm not being friendly. But I'm incredibly impressed with myself. That Facebook page is actually legit. And it's a really wonderful place. Like I I'm proud of how it, how it operates and how people act in there and how they help each other. It's really cool. But yeah, I just it's interesting, though, because you can look at the Facebook page and think, Oh, this must be all the listeners of the show. But it's not nearly a fraction of them. As a matter of fact, a lot of people on that Facebook page. I don't think some of them you know, the podcast exists. They just know what's a good Facebook page.

Howie 1:24:54
And that was the other way. So when I was trying to get the information on the number of listeners, I actually was podcast first. Then my wife showed me the Facebook page secondarily. So I would imagine the same things happening reverse.

Scott Benner 1:25:05
Yeah, yeah. I think one feeds the other, it kind of goes back and forth. And, you know, I'm trying to do some math here for you real quick. So the podcast is 4.6 million total downloads right now.

Howie 1:25:20
That's amazing. That's awesome.

Scott Benner 1:25:21
If I divide that by, like, just 550.

Unknown Speaker 1:25:26
So hold on a second. 4600123.

Scott Benner 1:25:35
Yeah, so if you think about it this way, if, if, if those downloads represented, say, everybody listened to every episode, there'd be about 9000 people who are listeners, but there's no way that that's the case. Right? Like, No, everyone hasn't listened to 550 episodes. That's just obvious. But from there, I don't know how to do an average of how many people have listened. So I don't know how to do the math, like, you know, is the average 50 band do? Is it 100? You know, like, I genuinely have no idea. So you kind of do that. You just kind of do that math. Like let's say everybody, on average listened to 100 episodes, then there's 46,000 plus people who have listened to the podcast.

Howie 1:26:18
Now it makes complete sense. Yeah. And this one's probably going to generate a couple 100,000. So those numbers should jump up. Ya know,

Scott Benner 1:26:24
I think just you being here, honestly, is gonna make you 100% You're a difference maker, for sure. Oh, absolutely. All right, man. I hope you have a good day. I appreciate you doing this.

Howie 1:26:35
No, thank you so much for the time and attention and the education most specifically for selfish reasons. I really, really appreciate the guidance and and what you're giving me selfishly here,

Scott Benner 1:26:44
I think that you're, you're a person on the precipice of a five, anyone seeking the fives. And I have a soft spot in my heart for people who have had type one for a really long time, because I imagined that it must be very difficult to go through all these different iterations. And because a six to you, I would imagine is seems like the pinnacle because of how you've lived through it. You're right, I'm happy with the six. Happy, are you kidding me? I've been your fireworks coming out of your ass.

Howie 1:27:19
Mom's my mom's like, 74. She's like a six, three. I'm like, at least I'm not like a 74 year old woman.

Scott Benner 1:27:25
I imagine your mom right now looking at your Dexcom

Howie 1:27:30
Thank God, I don't have to follow up. The best is like mine goes in and out of Bluetooth. And my wife looks at it and like she'll tell me stuff. Like just finally, just leave me alone.

Scott Benner 1:27:40
Well, man, listen, I'm not saying there's anything wrong with your management style. Like I genuinely mean that I just think no more there if you want it.

If you don't want it, I understand.

Howie 1:27:50
I love to print the fives and I'm going to show you my chart. So I'm the first thing to do is lower my lower my targets and raise my raise my raise my low, I'm sorry, lower my low and lower my high.

Scott Benner 1:28:00
Here's what you're gonna do when you're done, go to juicebox podcast.com, scroll down a little bit. And there's a section called algorithm pumping. And there are a bunch of episodes there about looping, which is just a different algorithm, I think if you listen to them, and there is one there about control IQ as well. But if you listen to the looping ones, you'll get more ideas about how to kind of manipulate the algorithm a little bit.

Howie 1:28:21
Yeah, cuz when you said my daughter loops, I thought that was like a specific pump that I never heard

Scott Benner 1:28:25
of. No, it's It's literally, you download off the internet, some lovely people, I think the man who made mine lives in Russia, I think you download the code, you build the app yourself. The amazing people online built these like little like Bluetooth links that link the algorithm on the phone to your pump. They mean they hack the pumps, you know, so that the I mean, Omni pod is not something they offer, you know, from the company. It's all do it yourself. I didn't realize that. Oh, wow. But it adds it adds more flexibility for targets is that really the biggest deal and the one we're using has auto Bolus. So like where control like you see should go up and it raises your Basal. My daughter's boluses. So you get a little more instantaneous, you know, you know what I mean? Yeah, that's, that's what I hated

Howie 1:29:18
about Medtronic pump technology, centralized key will give them micro Bolus, but it's still not enough. Usually

Scott Benner 1:29:24
not enough. Yeah. Now these things need to get more aggressive. And, and I and seriously, like, I listen, I have the opportunity to talk to people at a company levels all the time. And I'm always advocating like, I know it's an expense, but you gotta go back to the FDA. And you got to you got to do more testing to prove that you can have lower targets. It's a big deal, like let people have more flexibility with their targets. But you see, the bigger problem is that they have to run a study. That study costs a lot of money, and then they've got to take it back to the FDA and go through the process again. You know, but I just I keep pushing wherever I get the opportunity. So I hope people seem to listen. Seems like your work gets done quicker. Yeah, probably, but I know people listen, like I know. There's somebody really high up at Medtronic that listens to the show. So I know people hear me and I'm telling you that it's really important you have to spend the money and do it

a huge thank you to one of today's sponsors, GE voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that G VOKEGLUC AG o n.com. Forward slash juicebox. I'd also like to thank Ian pen from Medtronic diabetes for sponsoring this episode of the podcast and remind you to go to ink pen today.com To learn more about that insulin pen, and of course touched by type one.org. Go get your tickets, they're free

hope you're enjoying the show. If you are, please share it with someone else who you think might also enjoy it. And so I want to thank everyone who's ever taken the time to share the podcast with someone else. If you've already taken the survey AT T one D exchange.org. Forward slash juicebox to remind you that if you haven't, it takes fewer than 10 minutes and would be a huge help to me, the podcast and people living with type one. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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