#1389 Spirit of 76
Terry has seen some things in his 76 years.
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Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.
I'm speaking with Terry today. He's had type one diabetes for 50 years, and he's seen a lot about diabetes management come and go. He was diagnosed at 26 years old. He's 76 today, and his father also had type one diabetes. Please don't forget 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 you don't
Speaker 1 0:40
forget
Scott Benner 0:45
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The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g7 the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juice, box. This episode of The Juicebox Podcast is sponsored by touched by type one. This is my favorite diabetes organization, and I'm just asking you to check them out at touch by type one.org. On Facebook and Instagram.
Terry 1:59
Hi. My name is Terry Wheelan, and I'm a type one diabetic. In June of this coming year, it'll be 50 years, and so I think that's a significant accomplishment, considering awesome, but I've got quite a quite a track record of experiences with type one all the way through the technology developments for over the years. Yeah, and I can talk about that forever, but I'll, I'll let you kind of chime in. Scott, how old were you when you were diagnosed? I was about 26 years old. Is
Scott Benner 2:38
this you telling me, Tara, you're 76 Yes. Wow, that's crazy.
Terry 2:42
Hey, good with the numbers?
Scott Benner 2:44
Well, yeah, wait, do you see? Do you see all the things I'm great at, while we're talking simple math is only one of them. So you're in your 20 Are you married by the time you're diagnosed? I
Terry 2:55
was, in fact, I was just recently married and had a less than a year old son, wow.
Scott Benner 3:03
Okay, so you recently married, had a new child. Was there any diabetes in your family?
Terry 3:09
There was my father had it. He got it at age 50, type one. And he was a he was a doctor. What kind of physician, pathologist? And he had his his own lab. It was in the Midwest, here in Iowa. I'm currently in Nebraska, so I had to drive from here, from Omaha to Cedar Rapids, Iowa, and that's about back then, 50 years ago. 55 was the speed limit, so that was about a five hour drive instead of a four hour drive like it is today, at a higher speed limit. And
Scott Benner 3:49
Terry people don't know that's a five hour drive with air rushing in through the doors and crazy noise and fighting with the car. Yeah,
Terry 3:57
exactly, exactly. And shocks were very good either banging
Scott Benner 4:03
around hard those hard rubber tires that not, not all the way back to hard rubber, but they still weren't as everything about driving sucked in the past. So much better.
Terry 4:12
That was not, it was not fun, but having a newborn baby driving all the way back there. Now I went back for one reason, and that was to have him in his laboratory, which he had a private lab, is to find out what was going on with my blood sugar. Because I had gone on a diet, and I was trying to lose about 20 pounds. Not that I was overweight, but I wanted to lose about 20 pounds. Well, I was on the diet, and I started losing weight, and of course, I was going to the bathroom all the time. I was always thirsty, hungry. I mean, I'm basically starving to death, as you well know what the symptoms are. From that standpoint, I. Knew that after a period of time, I started cheating on the diet, as we all do, and I was still losing weight. So then the red flag went off in my head, something is seriously wrong here. So I wanted to go back and get a blood test. At that
Scott Benner 5:16
point in your life, how long had your dad had type one?
Terry 5:20
He'd had it for about two or five, six years.
Scott Benner 5:24
You were maybe a college or gone already before he was diagnosed.
Terry 5:29
Yes, I was in college when he was diagnosed. Exactly right. And so anyway, we drove back and he tested, had me do a glucose tolerance test back then. Why? Why they would do that with a suspected type one diabetic. I don't know, because you drink a real sugary drink in order to test that, but anyway, I came back with a blood sugar close to 800 Okay, so why I wasn't semi comb toast at that point? I don't know. Now, he was kind of a hands off kind of dad, and he was not a very good diabetic himself. A lot of doctors aren't that are type ones. There's a few exceptions with the decoy, the doctors are pretty good. He told me that when I go back, my five hour drive back with a baby and a new baby and a wife that I should find a doctor and get treated for type one diabetes instead of giving me a shot of insulin, which she could have done very easily. He didn't. I don't know why. To this day, I can't answer that he's long since passed, I was driving back in a semi com So state, as I recall, I know I had to stop at every rest stop along the way, on the way back to because of the frequent urination and the thirst. But anyway, I made it back, and at that particular time it was urine test strips, the needle, the disposable needles had just come out probably six to eight months after I was diagnosed. I don't know the exact date, but somewhere around there. So prior to that, he showed me how to boil needles in a metal pan. And of course, that just all you're doing is taking the needle and banging it against the side of the metal pan to dull it a little bit. So it felt even worse when you tried to do it dull and clean. Yeah, dull and clean, that's for sure. And it was, you know, those disposable syringes when they came out was great. And then they actually had blood strips that you could prick your finger with, which I thought was really a lot of fun. So now, now I had two ways to penetrate my skin and cause pain. Yeah, and I thought this was maybe not something I'm really gonna like going forward,
Scott Benner 8:03
right, right? It might seem too that if he wasn't great at managing for himself, and listen, I mean, 50 years ago, you're describing what diabetes was. 50 years ago, there wasn't a ton that you can really do for yourself. You follow the rules. So even if he was doing that, I'm imagining he might have looked at you and thought, I don't really even know what to do for him, like he might not have even have known what to do for himself. You know what I mean, he did.
Terry 8:26
He didn't. He wound up he was, you know, I told you, a pathologist, and he did autopsies for small hospitals around where he lived. So he was always driving different places on top of trying to run his lab, he wound up in the ditch two to three times a month. He got so low he semi passed out. I don't know why he didn't kill himself trying to drive around in that condition, but you know, he wasn't good about testing. And he'd take a shot in the morning. Think he was going to be good for the day. Well, back then, the insulin that you would use was beef, pork insulin. They didn't have any recumbent like we do today, didn't have long acting or short acting or anything. It was just beef, pork insulin. Well, you know, to fill a vial of insulin like you have today, it would take a pile of pagan cow pancreases about two and a half feet tall and about three feet in diameter just to make one vial, to make a little one vial. Yeah. So it was very, very unstable when I used it, because I had no other choice, I used my thigh to give myself a shot. And if you'd look at me and look like I went to a golf range and got hit with 100 golf balls, because it would lead an indentation that looked about. Size and would attribute about the size of a golf ball. Now, since I got off of that, not using it, that went away, which was nice. It was not a very stable insulin. It kept you alive. Basically, that was about it, yeah. And of course, the blood, the blood test strips back then were about as reliable as the urine strips were. You didn't get a real good sense early on with some of those, like we do today, they weren't as sensitive to the chemical makeup of the strip to read it correctly.
Scott Benner 10:34
What were your goals? Like, what were you trying to accomplish day to day? And what were you trying to see that you were doing at doctors visits. You know what I mean, like, what were your hopes for your outcomes? Dexcom g7 offers an easier way to manage diabetes without finger sticks. It is a simple CGM system that delivers real time glucose numbers to your smartphone, your smart watch, and it effortlessly allows you to see your glucose levels and where they're headed. My daughter is wearing a Dexcom g7 right now, and I can't recommend it enough, whether you have commercial insurance, Medicare coverage or no CGM coverage at all, Dexcom can help you. Go to my link, dexcom.com/juicebox, and look for that button that says, Get a free benefits check. That'll get you going with Dexcom when you're there, check out the Dexcom clarity app or the follow. Did you know that people can follow your Dexcom up to 10 people can follow you. Right now I'm following my daughter, but my wife is also following her. Her roommates at school are following her, so I guess Arden's being followed right now by five people who are concerned for her health and welfare, and you can do the same thing, school nurses, your neighbor, people in your family, everyone can have access to that information if you want them to have it, or if you're an adult and you don't want anyone to know, you don't have to share with anybody. It's completely up to you. Dexcom.com/juice, box. Links in the show notes, links at Juicebox podcast.com, and when you use my link to learn about Dexcom, you're supporting the podcast.
Terry 12:09
I can answer that. First of all, you didn't know that you wanted to go to an endocrinologist. You know that diabetic type one you went to your family doctor, a GP. That's what they called them back then, general practitioner. Now they're internal medicine doctors, and nothing against them. They they learn the basics about diabetes and how to treat it when they go through med school. You know, for the most part, territory managers, or a lot of the pump companies and CGM companies don't go to visit internal medicine doctors, or they don't have the time. There's a lot of them out there. A lot of people stay with their internal medicine doctors, and they don't find out about all the latest, the current technologies and the techniques for treating diabetes. Mine was to try and get control of something that I knew very little about. There was very little information. JDF, juvenile diabetes Foundation had just started in 1970 while you're talking about 1975 no material out there to read. We didn't have, of course, the internet, cell phones, those kind of conveniences that we have today. So it made it really tough. You want to go to the library, you might be able to find some material dated back 1959 copyright, and that's what you'd get to read. So you were really kind of on your own. And to even, I think the only goal I had was to try to stay alive. Yeah, and, you know, it just, it was so much different now than what you and I are used to today. Right
Scott Benner 13:52
in present time, people are starting to talk about, they've been talking about time and range for a few years now, but now I'm here hearing them want to talk about time in tight range, meaning, I think 70 to 140 is what their what their goal is that we've been doing that with my daughter forever, but like now, it's going to start getting spoken about that way, which is exciting, because it kind of forces everything to to aim for that target, technology, you know, and everything else. So, I mean, you started beef and pork and, you know, with all the downfalls that it had, except for the one where it kept you alive. But then the next move is to, what is it? Mph and regular? Next mph
Terry 14:29
and regular. Okay, yeah, those were the two big inventions. Do
Scott Benner 14:33
you have a feeling for how long you were on beef and pork before you got to that
Terry 14:37
the beef and pork were probably three to five years, something like that. So
Scott Benner 14:41
you're still in your 20s, and you move over to these other insulins. Do you remember what the shift felt like, management wise? Did you What did you have to do differently? What did it bring to you? Well,
Terry 14:52
you wound up having more lows because the insulin would act predictably faster than. And the beef pork, that was one of the big problems. I bet I spent at least three to four times a month in the emergency room because of a hyper or hyper glucose unawareness event. You test your blood maybe once or twice a day at the most. Well, you know that's a point in time, and 30 minutes later you can either you might test your blood you're 120, and 30 minutes later because you're taking a test, or you're, you know, speaking in front of a big public audience, or something like that, and you get ramped up all of a sudden, you're 260, or 270 Yeah, or 300 you know, you didn't test your blood sugar and understand your blood sugar and what it was doing and what a piece of bread, white bread, would do. Back then, they used to say, if you had a low take a piece of white wonder bread and eat it. But that would bring your blood sugar up and it would, yeah, not as quickly as we'd like to have it, but,
Scott Benner 16:02
you know, it makes such a good point. And I had an experience with my daughter the other day. She's away at college. She just lost her CGM signal for, I don't know, an hour, right? But she's on an algorithm, right? So the algorithm is talking to the CGM and, you know, etc, so in that hour, it happens to fall. It's just crazy how it went. She went out to lunch and had pasta, and her blood sugar was doing great for, you know, an hour, and then suddenly she just loses her CGM, and so the algorithm doesn't have access to it for 90 minutes, till it comes back. And in that 90 minutes, her blood sugar went from like 95 to 320 because the algorithm wasn't, it wasn't like, oh, I should push, I should give more. And that was probably happening to you constantly, all
Terry 16:46
the time, yeah, all the time, right? And, you know, as a result, then I wound up with, to make a long story short, literally, a few 1000 laser treatments in both eyes because I was bleeding so bad from, you know, extreme highs, extreme lows, very unregulated blood sugars. In fact, I even wound up later on, having to have a vectrectomy, where they have five needles. They put in your eye, drain all the fluid out of your variety, get all of the bloaters out of there so that you can see and you don't go blind. Well, I had a good retinologist who literally stayed my sight. And it was, No, it is a tussle, but you'd go in for these into the emergency room, and you'd be in there all day long. Yeah, you know to try to regulate, either get your blood sugar up or get it down. I had an episode when I was helping to paint somebody's house, and it was chilly out, and I got home a little late, later in the evening in the summer, and I had to lay down on the bed. I just felt terrible. And pretty soon I started convulsing. And my son, who was at the time, about no he was probably 12, came in and laid on top of me to keep me from convulsing badly. We called the rescue squad. By the time they got there, my wife, at that while I was remarried, at that time, got divorced and remarried, and my current wife, who helped me immensely, knew a little bit about diabetes, or was making herself familiar with it, so she knew what to do, as far as trying to get a juice in me. But blood sugar wasn't coming up. It wasn't coming up. This was reasons why, you know, we had to go in, into the hospital so frequently to get it going. But I mean, you know, had episodes like that which were very unsettling, so
Scott Benner 18:47
you have a lot of hindsight. So let me ask you this question, because how do you manage today? What do you use?
Terry 18:52
I use the Medtronic 780 G and the G Force Sensor. Okay,
Scott Benner 18:58
and what kind of insulin I use, well,
Terry 19:01
I'm not supposed to tell you this, but I use fi asked, Oh, yeah, I love FIAs, yeah. I know it's the FDA has approved it for all the pumps FIAs, but the individual pump companies want to approve their own, you know, do their own. And I understand my
Scott Benner 19:19
daughter has been using a Pedra in an Omnipod for like, 10 years. So I don't think that's a thing you're supposed to do either, but works great. So okay, so you have fast acting insulin using 780 G. You have your sensor, so you know what it's like to manage now. And give me a tiny bit of context so I can ask my question, what's your range like today? What's your a 1c
Terry 19:40
my a 1c which I don't pay much attention to anymore because of I've got a niece who's a poster child for a very bad diabetic, and he winds up with an A 1c that's maybe, you know, seven or eight, which isn't horrible, no, but not like you'd you. You'd like to have it better than that. But, I mean, she skyrockets all over the place, extreme highs, extreme lows. Well, the average, you know, numerically speaking, the average is going to come out, you know, somewhat better than it really is. Yeah, I average now between 87 and 92% time and range, okay, what range do you keep? Try to keep 180 to 70. Okay,
Scott Benner 20:22
and what's up was that give you like a six two, a one
Terry 20:26
say, probably yes, 162, somewhere. Okay.
Scott Benner 20:30
So my point is, is you know how to accomplish this with with current technology, when you look back on regular and mph, and even your statement about your dad wasn't able to, like, really, they didn't test, you said, and, like, that kind of stuff. Was there really any way to manage back then that would have been any better? Like, what didn't you know then that? Now you can say, Oh, if I had just done this, this all would have been or does that not exist? No, I
Terry 20:54
think you've got a valid point there, because if I would have had the understanding of the impact, like that. Example I used, if my test my blood sugar, it's 120 and all of a sudden, you call me with real exciting news on something, and my blood sugar starts to shoot up. I would know that if I'm getting ramped up about something, or even if I'm just thinking about something, that kind of gets the heart rate going that I would go out and test what I didn't do back then, like I did before I transitioned over to the pump and the sensor, I tested 12 to 15 times a day. Okay, yep. I mean, the end of my fingers, I couldn't even, I didn't even have any sensation in them anymore, because I poked them all so many times here. I mean, I was using my thumbs and thought about using my forearm and stuff like that for blood tests, but I was really trying to manage it once I kind of learned what I could do and what impacted it, because it was more information available as time went on. Ada, yeah. Ada started putting out stuff. JDRF started putting out information, and pretty soon it was in layman's terms. So you, when you talk to a doctor, you know, sometimes you get the medical terms, and you go out of there and you feel like a deer in the headlights as far as or I drank from a fire hose. What did I just learn? Well, how can I apply that? Well, early on, the doctor's offices didn't have any helpful monitor people that could help you stage it. You know the dietitians and trainers for you know how to manage and how to do what you do every day. Yeah, you know the doctors didn't do that. They've got their 15 minutes of fame that you're in there with, and if you get 15 minutes, that's a long visit, as you well know the doctor. So that would have helped tremendously had I known a lot of that stuff. And once I started to learn it, then that's when it started to pick up.
Scott Benner 23:01
And you needed those data points, so you tested. So I did the same thing. My daughter's 20 Terry, she was diagnosed when she was two, so she's had diabetes like, 18 years now, and in the beginning, I mean, we were just, you know, insulin with, uh, with a syringe and, like, a little meter. That's where she started, basically, lever mirror and Novolog. And, you know, hurry once he was in the high eights, the nines. When she was first diagnosed, we didn't know what to do. We were following what we thought were directions. By six months in, she had a seizure because we gave her too much insulin for food or something or time to I don't know what I did back then. I didn't know what I was doing. You know, then you start learning a little more and learning a little more. And then suddenly I was like, I need to test to know what's going on. And I remember the first time that I told her nurse practitioner. Her nurse practitioner said, Why did you like this test here? Her blood sugar was like, 300 something. She's like little three, four years old, you know? And she goes, When is this? I said it was an hour after she ate. And she goes, Well, why would you test her an hour after she ate? You know, she's going to be high. And I went, I don't know that. I'm like, I'm trying to figure out what happened so I can stop it. Like, I think I could stop it, you know? And I remember even then, and this is only, like, 14 years ago in a metropolitan area, at a good hospital, you know, the whole thing where she's like, don't test then just wait till later, it'll go back down. Great. Thanks. But I would test her a ton so that I could get these I almost was making a CGM graph, you know what I mean, with the little data points, trying to figure it out. But you were doing that a long time ago. Before that, I
Terry 24:37
was trying to I didn't realize what I was trying to do, but I was trying to figure something out, because obviously everything I was doing wasn't working. Yeah,
Scott Benner 24:46
yeah, okay, so regular and mph, you're still injecting that. I guess the next step is you get a pump along the way somewhere, right?
Terry 24:55
I got that about 2728 Years ago from the doctor I had was an endocrinologist, and she said, You are going on an insulin pump and sensor. And I said, Okay, I helped start the chapter of JDRF here in Omaha, and started the gala and the the chapter here and in Lincoln Nebraska, and we had a guy who was as fit as any track star you'd ever know, but he was a type one, and he said, I don't want that ball and chain hanging on me now. That stuck with me for a while. Okay, so I kind of resisted the ball and chain concept in my mind, even though it never turned out to be that way once I got it. But my doctor said, if you want to continue to live, you got to have this. And so my very first experience with a sensor was I started with Medtronic, and I've been with them the whole time. Was a sensor that inserted it a 45 degree angle. Okay, I had, after I met with the doctor, we got, we had the sensor, and I was with a brain school pharmacist, especially in diabetes care. Very nice gal. Didn't know a damn thing about the sensors. Okay, we were going to put it on my abdominal area. And I said, Okay, great, loaded. We shot the put the sensor in, and got everything taped up, and I went home. God, this thing is uncomfortable. I thought it was supposed to be. Wasn't uncomfortable. You wouldn't feel it, other than if you touched it on your skin, it hurt even touch the thing. And I thought, What's wrong as a last resort, like we do with everything that we try to put together or learn about, we read the instructions. Okay, so I pulled the manual out, and I started looking at it, and it said, you have to take the needle out. Oh, she left it in. She left
Scott Benner 27:11
did her then,
Terry 27:12
yeah, oh, my goodness, it's a good thing. I caught that. So anyway, I still see her periodically a diabetic events around town here, and I always joke. She says, How's your stomach just
Scott Benner 27:26
grabbed my side when I saw her. It's you. I have a bad feeling. Yeah. Are you using the guardian for now? Are you looking forward to the newer CGMS that are coming from Medtronic in the future
Terry 27:38
sim, pleura, sync, yeah. Do you? Yeah, that's that's out in Europe, has been for a year, and yes, that's going to be phenomenal, because it takes away your wait time or to calibrate, okay, you know, for the two hour calibration, you don't have to charge it. It's got its own transmitter and sensor all combined in one on a server that you just pop it on. The way you go all done, yeah, you know. So that's yeah, that's going to be great. But the g4 is phenomenal, because I think I told you at one time, I went through the clinical trial with the 780 G and the g4 and this is when we were trying to test it. Now, part what you just said a little earlier about knowing the impact of a meal, when you have a meal, or certain meals, what can happen. And with this testing that I did in the clinical trial, and we had it at several different set points, 101, 10, 120, but anyway, I tried it at the 100 and I had to eat a meal, and it was a hamburger, french fries, ketchup, a beverage, non sugar beverage. I just had an iced tea, a salad, and then a dessert, and it came up to about 75 to 80 carbs for that meal, and they did not want me to Bolus, or anything other than if I hit 300 then I would start bolusing, how the pump would react, how it would do what it did, sure at all three set points, having the very same meal, and I had to do it a couple of different times. I never got over 254 without even bolusing, without even Bolus Yeah, no. And I have pretty crazy I will tell you right now with that system. And I tout it because I played with it and experimented with it, that there are a lot of meals, I mean, a lot of them that I eat, of course, I eat a little less than I used to, just because my age, I'm not that hungry. Yeah, you know, I don't eat three hamburgers. I eat one, you know, kind of thing. And there's a lot of meals I don't Bolus on purpose. I look about an hour or two. Later, and it may have bumped up maybe to 200 No, it's interesting
Scott Benner 30:03
to hear your your long term perspective. Because, I mean, I've seen my daughter do the same thing, like, you know, She'll miss a Bolus or something like that, and she'll climb 200 and come back down again. And I know for a lot of people, they're like, oh, I don't want to be that high, and I absolutely support you not being was so just, like, interesting, just how casual you were like, Oh, you went up to, like, 250 and it came 50 and it came back down. That's amazing, isn't it? And I thought, like, You're amazed by that, because you have context from 50 years, you know, where that situation before could have made your blood sugar 700 and put you in the hospital? Yeah,
Terry 30:36
exactly, exactly. That's really something to me. This is the fourth iteration of the artificial pancreas project, actually, JDRF, I know that it's break through T 1d is our new name, but JDRF, back then, started this 18 years ago, sure. And they got all the pump companies and CGM companies together, sat them down at a table with the FDA, which I don't call the Food and Drug Administration, I call them the federal delay agency.
Scott Benner 31:06
Takes a while sometimes, doesn't it? Yeah.
Terry 31:09
Anyway, they sat down and they said, What does an artificial pancreas look like? And they gave them the minimum requirements from the FDA perspective, and everybody went off. And all this competition has us right now. This is the fourth iteration of the artificial pancreas, and I think the next iteration that Medtronic coming out with. Now, I don't know about tandem and an Omnipod, and those guys are all going to have their own version. We're in an age where we've got an artificial pancreas just about complete. Now, it's not a biological cure, but it's theoretically a technological cure, yeah,
Scott Benner 31:48
and for a person who had 1000s of injections in their eyes, I would imagine that seems like pretty awesome to you. What else happened to you in that span of time, besides your eyes?
Terry 31:58
Well, I had gastroparesis and gastroparesis is where it affects the main vagus nerve that runs down the center of the body. It controls respiration, somewhat of the heart rate, motility, digestion, and when you get that, you have explosive vomiting and diarrhea at the same time you get hospitalized. I was in there for three days before they could get that under control, and that's because of the the highs and the lows just going, Yeah, completely berserk. And you were in the bathroom, you didn't know whether to stand up or sit down. I mean, it was, and sometimes you had a bucket here and you were sitting there, because it got that bad. And of course, when you think of respirations are controlled by that vagus nerve, yeah, and all of a sudden you're doing enough damage to it that you don't have the motility of things moving through. That's kind of scary. And then it impacted, course, my site. Obviously, I'm I've got problems with my site right now because of the first 20 years, but after I got on the CGM and this pump for almost 30 years, I had no treatment for any diabetic related condition period, yeah.
Scott Benner 33:22
So you think now what's happening to you now is more a function of age and prior damage, but exactly, exactly once you found that that. Listen, I've had a lot of people on talk about stuff like that. There's a guy that came on one time, lovely guy named Mike. He's in a, I mean, he might be in an episode called complications, are complicated, or something like that. But he, you know, he grew up through a time like you're just, you know, describing. And he said that by the time he found the podcast like his, his site was really waning, and it actually got better, like it improved, and then it reverted, and it got better. I mean, didn't go back to, you know, like when he was, you know, two years old, or anything like that, but, but he had a real significant improvement. I asked him why, and he's like, I learned how to use insulin from you, and now my blood sugars are stable, and they don't bounce around all the time, and they're lower more than they're high. And that's that, you know, so, yeah, it's a little sad that it took that many decades for people to figure it out, and you're still involved in the community. So, you know, there's still, it's a coin flip. Whether you get a good doctor or not to manage your diabetes, you don't know who you're going to get right. Like, and you could easily get somebody who says, still, like, Oh, it went up to 200 after a meal. It's fine. Did it come back down on its own? Then it's okay. You know, you can still get that advice today. I do these conversations with people like you, hoping that doctors will hear it and think I should maybe put some more effort into figuring out how all this works so I can explain it better, so that, you know, I'm not talking to somebody today who, 30 years from now, is going to need to have the fluid drained out of their eyes to get rid of their float. Like,
Terry 34:54
you know what I mean? Like, yeah, exactly, yeah. That shouldn't happen to anybody going for. Forward. Now, part of that, I can just dovetail on what you've been saying. There are you
Scott Benner 35:04
starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure, once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025
Terry 35:47
going to an internal medicine doctor is fine, as long as you're willing to pursue on your own some of the technologies that are out there, or ask the Doctor about the technologies, because they don't get the visits like the endocrinologists do with from the sales reps, territory managers, whatever you want to call them, for the companies that are developing this technology. And it's going fast, as you well know, it really moves out there. But one of the things that I'm doing. I'm president of the cosmopolitan club here in Omaha, one of them, and we raise money. Our club raises money for scholarships for kids to go to diabetic camps. There's two of them here in Omaha for at different ages, and we raise money for that. But I'm getting this club involved in creating a brochure that says, Why do I need a CGM, and what the hell is it? And those we're going to go to every internal medicine doctor in the metropolitan area and make sure they've got those on their desk, make sure that they pass those out to their that I'm going to list the companies that make them and say, if you're a type one or you're a type two and you're using insulin, then you better have a CGM on. There's no reason not to, because those companies have programs for people that can't afford it, Medicare and Medicaid cover them right now, or if they're on Medicaid or Medicare, like I am now, because I was one of several advocates that we did advocacy work in Congress for five years to try to get Medicare and Medicaid to cover CGM. And I mean, I could tell you all kinds of statistics and war stories on that, but we'll leave that for a different day. Maybe
Scott Benner 37:44
I keep thinking that you're still involved in all this, probably because of the impact that just Ada and JDRF putting any information out meant to you when you were younger, like there was finally something to try to figure out, and you're just trying to continue to do the same thing for people. Is that
Terry 38:02
right? Exactly? I'll do it any way I can. In fact, sometimes if someone like yourself or myself sit down with somebody across the table and talk to them about it, having the experience of having a loved one with diabetes and or having it yourself, you're a much better representative, per se, than the sales reps, because the minute they find out they're a sales rep, then, you know, the hair goes up on the back of your neck and you're waiting to say no, if they'd shut up long enough to listen to you, if they hear it from me, I have no skin in the game other than I want them to get the best possible care so they don't have to go through what I went through. Yeah,
Scott Benner 38:44
yeah, no, because, and it's beyond your, you know, your physical health too. I imagine that diabetes has had implications in your personal life, and, you know, probably your jobs and all the I mean, your blood sugars are bouncing around. You're in the hospital. You know, your dad's driving into a ditch. I, by the way, I figured it out earlier. Was your dad born in 1918,
Terry 39:05
yeah? I think, no, it might have been a couple years earlier, a couple years older than that. I'd have been 16, yeah,
Scott Benner 39:10
because you said, like, he wasn't a very involved dad. And I thought, I wonder when he was born, and when I just tried to figure it out my head, I was like, yeah, it's that was probably like some warm, loving having him drive out to the you driving out to the lab and him going, you have diabetes? Like, uh, having a yeah, oh, yeah. Father, Son moment.
Terry 39:28
He was born right about the time that they started in Canada, started researching, trying to figure out what caused diabetes, because that was called the sugar disease back years ago, yeah, and when you had the sugar disease, you could not eat any carbs at all. Period. That's the only way they treated it. Tell Dr Banting. Frederick Banting discovered it in 1919 I believe. And then in 1921 22 he had perfect. Did it enough to do the beef, pork insulin. That's when Eli, Eli Lilly came in and started backing him up, yeah, funding him so he could get insulin on the market. It's
Scott Benner 40:10
pretty, it's pretty great moment for everybody. That's for sure. I, you know, my daughter's said to me before, she's like, you know, I was born at a certain time. I just would have died when I was two. I was like, and that's hard thing to know your whole life. You know that that something like that could be how many children did you end up having, and did any of them get diabetes?
Terry 40:27
No, I had two boys, and neither one of them, thank God, or none of my five grandchildren have it. So I'm keeping my fingers crossed that none of them get to the age of 26 and all of a sudden discover, yeah, that. You know, of course, if you're going to get diabetes, Scott, this is the best time to get it right now, with the technology that's available, if you put a CGM on and even even do a borderline trying to control it or manage it, you won't have any of the complications that I had to go through, I was
Scott Benner 41:01
gonna say, be a million miles ahead of where you are at that age. Yeah, you brought it up earlier. Like, where does this go from here? Like you said, you know, Medtronic got another sensor coming in America. All these other companies are, they're in this battle, which I agree with you. I heard you say it earlier. I like that they're competitive, because I think it keeps them moving. I do wonder if there's going to be another sit down at some point where maybe the next thing that an, you know, an outside entity says to manufacturers is like, Okay, we figured this out. Like, now, how do we get this better? Like, right? How do, how do we make this algorithm more, you know, aggressive when it needs to be, not when it doesn't need to be. Like, keep innovating this thing. Because you don't know where this could be. You know,
Terry 41:41
when I was in on the clinical trial, they asked me to sit in for the diabetes technology society. I'd never heard of it before, and these are scientists and technoids from all over the world that sit on this while I was on the call for 13 hours, and they did it for four days, and they talked about it, and some of the Technos had talked about the stuff that they've got coming out, or that they've perfected, and their weight. They're going through clinical trials now, one of them that I was really excited about, it's just going to be an app that's going to be on the phone. I don't know if this is going to be Medtronic or omnipot or tandem, whoever's going to get it, because these technoids, University of Virginia is in Charlottesville, had the guy that's in charge there of that department is really an innovator in this air, in this area, and what it is, it's An app that you go out to eat, let's say at Burger King. I'm just going to use an example. Go out to eat and you have a burger and fries and a drink, and I don't know, some kind of dessert or something like that, in front of you. You look at it, how do you know what how many carbs are? They can tell you the calories, but they can't tell you the carbs. Well, you touch this app, and it'll automatically come up on your camera, and it'll look at it, and it will give you an estimation of the carbs of that meal. And it says you can either take this or you can up up your Bolus. Let's say it said 50 carbs. You could up it 50 carbs, and have it do the calculation, like it does now for whatever your insulin to carb ratio is, or you could lower it, whatever, just based on what you think. As we're creatures of habit. We have a tendency we go back and have the same thing again, if we liked it. Well, if you come back, it's going to say, Okay. The last time you had this, you went low, because you exercise, and you didn't tell me, so you got to put in, yeah, I'm going to go exercise. So put it on a temp target. I went out and exercise, so I took lower insulin, and it will keep track of that every time you go back and have that same meal or something similar to it. Yeah. So, I mean, that's a huge break, because people even to this day, I miss judge on carb count, sure, for some things that I look at and every diabetic does day in and day out, you're going to miss, miscalculate, say, Well, the last time I had that, I went real high. So I'm going to give it a little bit more. Well, there was a reason why you went high, because you did something else that you don't remember. Where this app can keep track of that. Yeah, and all you have to do is just enter some little code in there to say, I exercised or I went home and slept and ate popcorn.
Scott Benner 44:35
I don't think we're that far away from AI based technology helping you with this stuff too, like seeing what your settings are and seeing what your outcomes have been, and making suggestions to you about what maybe you could move settings to to help you. And I don't think we're far from that at all, honestly. So because
Terry 44:54
the Medtronic comp right now has has had AI in it for about five years, and. And they put some real sophisticated algorithms in, because it's got this meal detection technology. And when I sit down and I start moving my my hand to my face, like that, the pump can detect somehow that kind of motion. Now I know they have thing that's like a Fitbit that you wear on your hand, and if you use it on the hand that you eat all the time with that will automatically kick in the pump to know that you're eating and pay attention. It'll either buzz you to say, don't you want to give a Bolus, or what are you eating that you maybe shouldn't, or you just have popcorn, or something like that.
Scott Benner 45:41
That sounds awesome. I had a guy on once that was talking about, you know, just how the implications of, as an example, like different pizza joints are like, right? Like two slices at one place might hit you differently than two slices at another place, and that our phones now know where we are all the time. So, you know, you go out and you tell them having pizza, and it knows you're at Pizza Hut, and then you go to another place and have pizza, and it knows you're at a different place, and it can, like, kind of say to you, like, the idea is that it would be able to tell you at some point, hey, don't forget, we're at Pizza Hut right now, and that takes 25% more insulin than the pizza over here, or something like that. Like, right like, I mean, that doesn't exist right now, but that's not crazy to have, you know, like little things like that. So I want people thinking about those things and ways to win them. Yeah, yeah,
Terry 46:29
they really are. I think some of the stuff that's going to come out in the next 18 months is going to blow our mind. Yeah, I'm excited, because a lot of it these companies can't say ahead of time before they go to the FDA all the stuff they're doing, yeah? Well, yeah, once they've got it in the FDA for review, then they can say, Okay, this is what we submitted to the FDA. That may not be the final thing, once it's approved, right? It may be a little different, you know? So hopefully better the FDA is paying attention. There
Scott Benner 47:02
are companies designing more stable glucagons to be in, like, dual hormone pumps, you know, like, that kind of stuff is all like, I mean, imagine that, you know, you start getting a little low, and it just kind of bumps you back up, and you don't even know what ever happened. That's right, yeah. I mean, that kind of stuff is that
Terry 47:18
that's kind of, kind of here now. With beta bionics, they came out with their new pump, and it's again, where you don't interact. I've never worn it, so I'm just speaking from people that have had it. Very few people right now have it, but more will. You don't have to do anything with it. So I but it doesn't have the dual hormone, no,
Scott Benner 47:41
but yeah. But they did just enter into an agreement with uh zerist to for zeros to design one for their pump. So, like, I don't know, it probably take years, but, like, that kind of stuff is, like, that stuff's exciting to me, you know, very, very and having you on to talk about your your entire history with diabetes. And to really put it into context, I think it makes this stuff even more exciting, because it could be, you know, for somebody who was diagnosed last year, this isn't exciting to them. They just want to know why it's not here yet. Like, you know, we live in a cell phone culture now where, you know, like, things get changed pretty quickly. But to hear your perspective, I think is valuable. Like, this must seem like magic to you on some level.
Terry 48:22
Oh, it does. I never thought I would live long enough to see what I'm experiencing right now, really, on all the all the CGM, some pump companies,
Scott Benner 48:31
why did you think you wouldn't live this long? And why do you think you're alive? I didn't
Terry 48:35
think I'd ever see this kind of development, because how long it would take. You know, we never heard of AI years ago. You know, we didn't even know about the internet, you know, back then. So all of a sudden, all of this stuff starts to come together. Now we're drinking information from a fire hose. So then all of a sudden, I'm just, I'm overwhelmed with all the information that's out there, and that's exciting to me that we've got that available now, but back then, I didn't see that light at the end of the tunnel. I mean, it really you just, you didn't look at it. You just were trying to manage yourself from day to day, and you felt defeated every time you went into a doctor's office, if you kept track, and I tried to keep track of my blood sugar readings, and they were always terrible. Every time I took a blood sugar reading, I managed to take it all at the wrong time, I'm sure, an hour after I ate. And it's up to, you know, almost 300 and I'd write that down, well, you'd go in there, and it was you were going to be judged on your A, 1c, and whatever you kept track of that way. And that was frustrating, as all get out, because you felt like a failure. Because I like getting grades in school, you know, I didn't get all A's and B's or one's and two's, you know, I made. Hit three. I made a couple F's in there, you know, or a five. And so I think that was kind of the way doctors didn't try to do it on purpose. That's the way they made you feel that they didn't gloat about all the good things that you did, because they were pretty minimal, but they certainly focused on the things you screwed up, yeah, and you didn't do or what you should do so that to have this come out like this. And my efforts of testing 12 to 15 times a day before I got a CGM finally, and a pump, you know? And I could say, Oh, my God, look at that. I can tell what I'm doing wrong. And when I tested and, you know, geez, I was doing damn near everything wrong,
Scott Benner 50:44
and you're willing to put the effort in, you just didn't know where to put it. Yeah, exactly, yeah. My daughter, like I said, she's in college now. She does a great job for herself, but the college food is tough. Oh, I'm sure not the greatest food. It takes more insulin. Like, I listen to a lot of people's stories. I've heard 1000s of people on this podcast, right? So I hear adults come back and tell their stories about college. For example, there's, I didn't Bolus for days for my meals. I'd only put in my basal insulin. Like, you'll hear all kinds of stories from people. My daughter, she Bolus every time. Great. Like, my biggest argument with her is, like, she doesn't, like, you know, sometimes I wish she pre bowled a little longer, and I do wish that she would look up after the meal, like an hour later. Like, that's a thing, I guess I was doing that she wasn't doing, right. But we're working on it. We're not. Nobody's panicking, right? Like, nobody's like, like, oh, nobody's hair is on fire. Like, she's doing a great job. She's gonna keep like, a six and a half a 1c at college on her own, which is unbelievable, insane, right? It's so great, yeah, but I do want her to look up an hour after she eats and just reassess and like and that kind of stuff. So we just, we go about it very slowly. We're trying to keep our relation. We don't want to push her away. We don't want her to get to the point because, I mean, she's gonna just one day be like, Listen, I don't need your help, but she does. She needs someone's help. Still, trust me, you could use somebody. You're 76 you could use somebody's help. You know what? I mean, like, we everybody could use the sounding board, and so we're just going at it very slowly and not panicking. I think that's why I liked it so much. When you said, like, oh, it goes up to 250 in it, you know the algorithm, like, knocked it back down again. You said it kind of casually, because that's the attitude that I'm adopting right now while I'm speaking to my daughter while she's at college, a little bit of like, you know, not a sprint, definitely a marathon, you know, we'll work at this slowly. A couple of months of blood sugars jumping up higher than they used to at meals is not a big deal, as long as long as it doesn't continue in that direction. That's how we're thinking about
Terry 52:43
and then the technology that we have, having her on the phone, having the ability to look at your blood sugar readings on a watch. I like it, because if I'm driving, I can just tap my watch and I can see what my blood sugar is, in case it, you know, starts drop. I mean, it'll warn me, warns me on my watch, on my phone, on my pump, right? So I have no excuse for not doing it. I always carry 20 or 12 ounce Gatorade with me. I always have them in the car. I always have them. Whenever I go anywhere, you drink one of those, and it'll take you out of a low without raising you up too high above probably 130 bounce on the work 4040,
Scott Benner 53:22
and you make sure. So tell me why. I mean, I think I know why, but I want to hear it in your words. Like you're very much on top of your diabetes, right? And you have been for quite some time, because there are plenty of people who have all that information, and they just ignore it, right? So why do you know it's so important, so much so that it's at the top of your mind all the time, like, what? What from your experience? Keeps you in that mindset, because you don't seem burned out, you don't seem upset by it, you know, no,
Terry 53:48
the fact that I've got the opportunity to manage it effectively. But when you have gastroparesis, you have your eyes affected like mine were, even the ability to swallow has been affected by some of the crap that you know, I did the damage earlier, so you have enough experience in that area. And so all of a sudden, somebody walks in says, Here, I'll give you these things that'll help do what you've been trying to stay away from her trying to accomplish before they give them to you. Use the tools they're there to make your life easier. It's 1000 times better for me now because of the tools that I have, and they're not even what you know, some of the biological side of the equation is working on with beta cell encapsulation, and, you know, stem cell manipulation, that kind of stuff is coming, but you know, it could be another 10 years before that gets through. And if you try to get something biological through the FDA, you think it takes long to get technology through. Way. Try to get that through. Yeah,
Scott Benner 55:01
it's gonna take a bit. You have so much perspective, and you know the alternative, and you're like, I mean, if you're gonna give me these tools, I'm gonna use them, because the alternative is needles in my eyes, and the alternative is, I mean, the vagus nerve being damaged is it's not just I have slower digestion. Now, like you said, there's a lot that comes with that. Yeah. Are you impacted by gastroparesis at this point in your life? No,
Terry 55:25
no, I haven't been since I got on the pump and sensor. Good for
Scott Benner 55:30
you. That's awesome, Terry, you're great. I talked to you forever when you meet young people and because I'm assuming you do with all the good work you're doing everywhere, is it in your mind, like, how do I impart the important part of this to them without scaring them or making it be like, Oh, this old guy thinks he knows something. Like, you don't even like, how do you talk to people? Because I struggle with that. Sometimes I try
Terry 55:51
to make get relaxed. Throw some humor in there. You know, like when I was on the beef pork insulin, I tell them I used to smell like a bacon cheeseburger. Now, some of them look at me and say, really? And I said, No, that's a joke, you know, but I it gives them a little perspective. I said that stuff was terrible. It didn't work. What you have right now is 100% better than what I had back then. Now it's not I walked up to school through 10 feet of snow barefoot both ways. You know, it's not one of those kind of things. I had all these complications, and I just try to go through them quickly. You don't want to go blind, you don't want to have a limb amputated. Have digestive problems and have to wear different bags, and your kidneys fail, and you have to go to kidney dialysis, you have the opportunity to eliminate all of that,
Scott Benner 56:48
so you give them the perspective without trying to scare them about it, like it's honest, but it's not like, it's not like you're trying to jump out from behind a door.
Terry 56:56
One of the nice things about diabetes, you can be looking at your phone all
Scott Benner 57:01
day long, if you want finally have an excuse to hold that cell phone. And nobody
Terry 57:05
can come up to you and say, put that cell phone down. You can say, I'm checking my blood sugar.
Scott Benner 57:11
That's probably a good way to get kids interested, because most people don't know that. Do you have a cardiologist? I'm wondering how you're like, look like, how do you manage? Are you trying to pre empt any kinds of because, I mean, you have, like, high blood sugars all those years like, you probably feel pretty lucky not to have any heart issues. But do you manage it like? But you know, you're keeping ahead of it.
Terry 57:34
The doctor that I got after I got rid of my internal medicine doctor, and that was for various reasons way back then, before I started with this endocrinologist. She's a doctor, she's from Serbia, and she's absolutely phenomenal. I just love her. And she's now kind of developed into research, and so she doesn't take new patients on, but she kept me on because I've been with her all these years. This was almost 30 years ago. She put me on a low dose blood pressure medication in a low dose cholesterol she said, you don't have either one of those now, but she said, In 20 years, because you're type one diabetic, you're going to be affected by that. So art wise and cholesterol wise, because of her and what she did, I have been without any real problems to that effect. Now what I did is I moved myself. You know, you have to in today's medicine. Got to have an internal medicine doctor as a primary care well, I went over to a geriatric doctor, and she is, you know, takes care of people that are aging, aging, things that are going on between her and my endocrinologist. That's my, basically, my sphere, other than the fact, I had both of my knees replaced due to osteoarthritis. Other than that, those two ladies are the ones that are taking care of me. And I've had stress tests. I've had heart monitoring. Blood pressure, sometimes it gets a little bit high, probably because I get a little too intense with all my work on diabetes, going around to people and get excited about it. Other than that, no, I haven't. Oh, that's great. Haven't had any other residuals.
Scott Benner 59:32
We don't talk about this enough, and if I talk to somebody your age, and I don't ask, I'll get an email about it. So you're having any trouble dexterity wise, do you said a thing you worry about for the future with pumps and inserting things,
Terry 59:45
no for the most part. I mean, got a little arthritis in my left hand and my middle finger. For some reason, it just hit that. That's been it. But otherwise, I can manipulate and put on infusion sets and sensor now I do have my one. Helped me put on a sensor, because I like to put it on the back of my arm, and it's easier for her to put it back there than it is for me. But I could put it my abdominal area or, you know, a lot of times people are putting it on their thighs, right, you know? So, yeah, I don't have that problem. I do try to, I exercise every day. I walk about three miles every day, and I try to do resistant exercises because of my eyes and the blood vessels. I can't do, you know, heavy weight training or anything like that, but I can do resistant, resistant bands, stuff like that, trying to, you know, keep myself in shape and do balance exercises, because the older you get, for some reason that seems to go one way or the other. So I try to try to keep that, you know, functional.
Scott Benner 1:00:50
You don't want to fight through all this that fall. Yeah, I feel like, no, in that time it takes you to hit the ground, you're gonna be like, Are you kidding me? Is this how it's gonna happen?
Terry 1:01:00
Exactly, exactly.
Scott Benner 1:01:04
Diabetes for five, five decades and a dog toys gonna take me out, huh? All right, yeah, exactly No. I'm
Terry 1:01:12
not gonna go that way,
Scott Benner 1:01:13
not today. Satan, like So Terry, I can't thank you enough for doing this with me. I really did enjoy it. I appreciate that you come on and and, uh, and having this conversation with me. Thank you very much. Hey, I
Terry 1:01:24
did too. I hope that it's helped and it will help other diabetics, because that's my main goal, and I'd be willing to talk to any diabetic or help them understand I do every day as a Medtronic ambassador. I'm on the board of the UNMC Med Center Advisory Board, so I try to work with diabetic patients as much as I can, and I'm more than willing to do that.
Scott Benner 1:01:48
Are you on social media? Can people find you or
Terry 1:01:50
yes, yeah, yeah. It's Terry Weland, okay, you should join my R, R, Y, W, E, l, a, n, d, Terry, you
Scott Benner 1:01:58
should join my private Facebook group, there's 53,000, active members in there. They could use your your your perspective, sometimes, I
Terry 1:02:06
will do that. Pretty awesome. Actually send you a request and you can honor, let me,
Scott Benner 1:02:12
I'll send you that. That'd be wonderful. Well, thanks again for doing this. I hope you have a great weekend.
Terry 1:02:16
Thank you. You also, Scott,
Scott Benner 1:02:18
thank you. Applause.
Speaker 1 1:02:19
A
Scott Benner 1:02:26
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