#1255 Almost Ensign

James shares his journey of being diagnosed with type 1 diabetes just 30 days before graduating from the Naval Academy. Despite this life-changing event, he pursued a career in aerospace engineering and navigated the challenges of managing diabetes for nearly 46 years.

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Scott Benner 0:00
Hello friends and welcome to episode 1255 of the Juicebox Podcast.

Jas was diagnosed with type one diabetes 46 years ago in 1978 at the age of 22. While he was in the Naval Academy, he was just 30 days shy of becoming an ensign when he was diagnosed. 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. People who want to buy quality and comfortable towels, sheets and clothing should go to cozy earth.com And they should also use the offer code juice box at checkout to save 30% off of their entire order. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Don't forget the juice cruise 2025 is on sale right now at juicebox podcast.com. Scroll down to the banner with the big boat on it click on it. And just like that you'll be vacationing with me and all of my friends. 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 us med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for yours, you can as well. Us med.com/juice box or call 888-721-1514 Use the link or the number get your free benefits check it get started today with us med this episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're higher low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out. Hello, Scott.

James 2:33
And thank you for inviting me to join you. My name is James Gafford. I'm a in type one diabetic for not quite 46 years now this is today's the 29th of February, happy Leap Day, by the way. In 2024 by I was diagnosed on May 8 1978. And there's a story that surrounds that our mutual friend Stephen Woodward was the one who suggested I might be an interesting guest for you. And it has to do particularly with that story about how I came to be part of this. I don't know community is one word that comes to mind. Arcade is another one that comes to mind. It's how I got stuck here. Basketball is another one that comes to mind. You know, I mean? There's lots of ways you can frame the whole experience of being type one. But for me, how it got started was I was Midshipman at the United States Naval Academy class in 1978. And was 30 days from graduating the day I was diagnosed. Had that not happened I was headed, I would have been on June 7 1978 It was commissioned as an ensign in the United States Navy, I want to go on in relatively short order to nuclear propulsion school and become ventually. Who knows what would have happened to what the details were because the A they didn't and and be, you know, there's no predicting if there's one thing we know about this, this particular affliction, it's that in a lot of ways, there's no no predicting what's going to happen today or tomorrow, or, or a week from now, let alone a year or 10 years now. But what we do know is that it is we couldn't have had this conversation 100 years ago, because at that point in time, nobody lasted 26 years with this because it was a fatal disease. Relatively short order. And that's not the truth today. So that's part of why I'm here. And figuring that out on for myself has been an adventure. And now

Scott Benner 4:34
I bet well, how old were you in 78? Like 2021

Speaker 1 4:38
I was 22 years and 44 days and about six and a half hours old. I think not that I was counting. Not counting really, really close.

Scott Benner 4:47
So you were 22 and you were diagnosed in 78. But yeah, did you always want to be in the Navy?

Speaker 1 4:53
Well, what I wanted to be was an astronaut. I mean, I just that was hands down my thing I was gonna do and So there's a chain of reasoning that goes along with that, that starts with an astronaut's or are mostly ex military test pilots, ex military test pilots, or military pilots or military officers or are became officers some way, the most prestigious way to do that is go to a service academy. I'm thinking Air Force Academy, and I have an older brother, who was a career NCO in the Marine Corps who called me one day and said, nobody in our family is going to Air Force you're going to Navy. So that was the inspiration. And I went through the whole application process and received an appointment started in the summer of 1974, after I graduated high school, and actually haven't had to start wearing glasses, my, my sophomore year, my youngster year, which, at that point in time, the requirements were such that that would have limited me from pilot training. But at this point, I'm far enough into the whole experience of being a Navy guy, and being dedicated to it and wanting wanting to finish certainly, and go ahead and be commissioned. So I'm starting to think well, what's what are interesting or productive and, and prestigious things I can do and nuclear propulsion was a big deal at the time still is. So that seemed to be the way to go. And I was I was, was an aerospace. I was actually a double engineering major. I finished all the requirements and received a degree in aerospace engineering also finished all the requirements for systems engineering degree the damn they wouldn't they wouldn't give me two degrees. I was I'm so pissed about that.

Scott Benner 6:27
I was gonna say like, did you just want to do this or were you good at it? But those are some degrees that would tell me you'd be great at it. Yeah, I guess most people wouldn't realize but they're more naval pilots than pilots in any other branch the military right. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store Chivo Capo pen and how to use it. They need to know how to use G Bo Capo pen before an emergency situation happens. Learn more about why G Bo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information that I don't

Speaker 1 7:52
know. And I suspect probably the Air Force has got more mainly because that's that's principally what they do with the Navy buys airplanes, but they also drive ships and submarines and, and a bunch of other stuff. So I can't give you statistics on that. But they do have a lot of pilots and and they do crazy things like like coming in land on a 300 foot long aircraft carrier deck and, you know, so so it's it's an interesting life. I know a lot of guys went slowly through I still stay in touch with who that was part of their careers. And as it happened, as I say that was all that was all in the future. That was all the path ahead of me. And on this eighth of May 1978. Suddenly, that path was no longer available. There was a barrier down in front of it. And I was going a different direction. Do they

Scott Benner 8:40
discharge you? Or do they just put you into a different room? Oh, no,

Speaker 1 8:44
yeah, they they discharged me what happened was I graduated and got my engineering degree and they received an honorable discharge for medical reasons from the service, and Naval Academy, midshipmen Air Force and Army Cadets are active duty personnel. So though this was a medical discharge from an active duty position. One of the interesting fallout from that in the long run is that it makes me eligible for medical care from the Veterans Administration. And that actually is literally where I get all of my medical care these days. Oh, wow. And there's a story about how I got into that too, because for a long time, I didn't think I was eligible for it. But it turned out I was and the VA action classes my type one diabetes as a service connected disability. So one of the, you know, little bullet points that I have on my my talking list here is for anybody who is a type one diabetic who was active duty at the time they were diagnosed to the best of mine, and I'm not I'm not an authority on this, but I am an example. And so and it's certainly a precedent, and I know that there are a great many people at the VA who received their treatment under this general You guys have what's called a service connected disability, we think in terms generally are things like people who get limbs blown off in, in a minefield, things like that. But the the general description that goes along with that, or the general category is a little bit broader. It really means any anything that happens to you medically, while you're active duty, causes you to then become no longer eligible to serve. for medical reasons, you get to discharge, you have to go through an application process, and they have to approve you, but it's a it's a kind of a one way ratchet operation where once you get approved, you're there, you're never going to lose that that particular disability rating. So interesting.

Scott Benner 10:41
I wonder why I've always wondered why you're not the first military person I've spoken to who's been diagnosed, like during service? Why would they not take quality people and just move them into a more? I don't know, like branch where you wouldn't have to pick up a gun, I get the idea that we're all supposed to be able to fight. But that's actually

Speaker 1 10:59
that's actually really an excellent question. And so part of the answer to that is timing. You got to consider the the this is 46 years ago, where that happened today. I think it's not unlikely that the US government certainly has an interest once they've spent Yeah, all the money for education for four years. What is the one of the equivalent one of the better for your educational institutions in the world, and they spent a considerable amount of money on your education on on your military training and and part of the requirement once you graduate is that you have a service, you have an obligation to serve for it vary somewhat depending on what you do. But typically, it's on the order of about minimum service obligation of about five years to pay back that investment to the government. And you know, it's a win win all the way around, as are these is supposed to be so when when a circumstance like this happens is there's a way to keep someone on active duty out of what we in the Navy would call a line officer role than they do. And at the time I graduated, I had a classmate who was graduated with type two diabetes, they conditioned him into the Supply Corps. But with type one at that time, we did not have the tools to manage it in a way. Yeah, it certainly weren't CGM. So imagine now, middle of the night, the the mid watch midnight to 4am on the bridge of 60,000 time missile cruiser out in the middle of the ocean, and the officer of the deck is a type one diabetes, and suddenly he's having a blood sugar crash. And there's other emergent circumstances that that pop up. That's just that's like a perfect that's like adding to a perfect storm. Oh, yeah.

Scott Benner 12:34
No, I mean, I take your point on that. But I don't know why you can't be an engineer in an office somewhere back in like Virginia, like making decisions about you know,

Speaker 1 12:42
that's that's a that's an that's an entirely valid point. And but the policy at the time was the policy. And his problem, I believe it's evolved since then there was a young man who graduated, just this last summer, the class of 2023, who was blind, he had a congenital problem with his, with his retinas. That wasn't was undiagnosed until right before his senior year, but they let him go ahead and finish and graduate. And then he had went through a similar from what I read about him, he went through a similar set of circumstances like the graduated, got his degree, and then got a medical discharge and the service. So in my case, I'm grateful that they allowed me to go ahead and finish in 30 days at that point, I'm, you know, I'm like one foot from the finish line. So would have been adding insult to injury, I think to say no, but

Scott Benner 13:30
what happens then to you like, I mean, 22 years old, you've got a path, you've been on it for quite some time, there are a lot of big goals and dreams, and there, none of them are gonna happen now. And so psychologically, do you fall apart? Or do you pivot? How do you handle that pressure?

Speaker 1 13:47
That's another good question. And for me, personally, I can look back and I have memories of that. Being in a hospital bed and pretty much not being able to sleep an entire night with tears coming down my eyes and then having it eventually being so exhausted that it did fall asleep for a few hours. And when I woke up having this I don't know quite how to describe this sense that okay, I didn't plan this I didn't pick this is horrible. Somehow I gotta go forward. So I started looking around and asking questions that summer after I got home. After graduation, I spent the summer traveling around the country on job interviews, and I got I think I had nine offers a lot of going out to Southern California to the Los Angeles area and went to work in the aerospace industry. I started my my first job was working on the on the space shuttle program and this was about two and a half years he said he's, you know, you have a two and a half years before the first race on law. So I was actually part of that program. As a as a civilian as you know, as a as an engineering employee in the large aerospace company that I could do and it also interestingly, working for big company like that they all have medical insurance plans for the employees on care with You're great, you know, I'm just another.on a graph someplace. So I'm not I'm not a big expense for that, as far as taking and at the times, found an endocrinologist and you had a prescription for insulin and it was, was beef, pork insulin, this was even before Yeah, or you Mulan came out. But that was the beginning of my career as an aerospace engineer. I actually refer to myself these days as a recovering aerospace engineer, I stole that line from a friend of mine.

Scott Benner 15:30
Well, I want to hear where it took you. So but first of all, beef and pork. So were you just shooting it once a day? Or twice? Yeah,

Speaker 1 15:37
I believe was once it was once a once a day injection with be Porkins. And so that, you know, I don't go back as far as some of them. People like Steven and our friend, the other one our friends do, who, you know, go back to the days of boiling glass syringes and sharpening needles. And, and, again, that was also the the Parkinson's at the time. But that's where I got started in early 80s, I believe, is when Lily first came out with cumulus right. That was their first recombinant DNA generated insulin, like you

Scott Benner 16:08
did regular and mph at one point as well. Yes, I did. Okay. And then you do that for a long time? I'd imagine I did,

Speaker 1 16:15
I did actually quit for quite a long time. And I actually wasn't part of the VA system initially, either. Because I'd been told I've asked the question, I've been told I wasn't eligible for it. But I don't remember when exactly I got started. But it was about about 20 years later, that was about two decades, as being more or less on my own. Being a support group of one, as I've called myself, I had a really good endocrinologist, actually a really good internist for a long time. You know, looking back and comparing how I managed the disease, then with how I manage it today. I mean, completely different. That's a hard comparison to make. By God was the thinking, Well, what I was thinking was was the best that I had available.

Scott Benner 16:59
Sure, no, I mean, we talked about it a lot. But it's, I mean, obviously, in this lifetime, we've seen some significant changes both in the insulin, the delivery methods and the measurements, you know, and the way you can see it, and how it's changed things is incredible, because I'm assuming you're on exchange died at one point you were probably eating at certain times. And another point in your life, certain amounts are right, they gave you the food chart and told you that one star

Speaker 1 17:25
probably was, yeah, I got all that information. But okay, the real truth of the matter is, you know, there were days where it whatever I ate, and I've, and I'd feel crazy, and I maybe I need to take more insulin, and there were days when I had had crashes. And there was, there was no, there was just no way to see what was going on. And I may have I remember getting my first finger stick meter somewhere in the in the mid 80s. And that was certainly a game changer. But by itself, it didn't change the long term aspects really, because okay, I can take a finger stick Oh, I'm, I'm really high right now, probably probably should take some more insulin, like, take bigger stick and all I'm really low right now. Probably should eat some ice cream, you know. And, but that's not a management, that's not a management scheme. That's, that's not a

Scott Benner 18:12
versions of not having a seizure and not being too high. So yeah, it's not real value for your health. And over time,

Speaker 1 18:20
I mean, I had more than one experience where I had a hypoglycemic crash bad enough to take me to an emergency room, I had that I did that five or six times,

Scott Benner 18:29
okay? Are you with somebody in your 20s dating or married or anything like that? On your own now,

Speaker 1 18:36
and again, I'd have girlfriends and seemed to have an affinity for nurses because they had a really good, they were really good at getting me up in the middle of the night, in orange juice down me things like that. But I've been married twice. Those are both long stories. The more recent one that was very amicable separation and divorce about two and a half years ago. And she and I still tend to stay in touch. We're still good friends. She's an RN, and she had a long history as an RN of working, you know, a foreigners in hospital and then she later went back and got a PhD in nursing research. So she she's a smart cookie. And one of her comments after knowing me for a while and us being together for a while, she said I had no idea what a roller coaster this this thing could be. Yeah. And this is this was from somebody who's a medical professional. Yeah.

Scott Benner 19:22
Oh, James, I, I'm in the middle of a series right now a couple of them. But I'm in the middle of one series. Now we're, we're medical professionals are coming on, and they're speaking anonymously. And they'll just you don't know who they are. And their names are being changed, though. I've heard so many different things now. But one thing that sticks in my head is that an RN with type one told me I'd be safer having a seizure in your living room than in my emergency room. Right? And I was like, wow, that's really something you know,

Speaker 1 19:50
I believe it. So, for me, personally, I mean, I didn't actually get connected up with the VA until the late 90s. And that was at the level In the VA Center in southern California in the Inland Empire, one of the things I have this is a little bit of a side note. But one of the things I've discovered this is this is purely anecdotal, purely experiential. I don't have any hard data about this. But I have a strong belief that one of the really good things about the VA is that there are a number of major VA hospitals all across the country that are closely associated with nearby major teaching hospitals. So for example, Loma Linda is Alma, Linda University Medical Center here in San Francisco, it's UCSF, down the peninsula, Palo Alto VA is most connected with Stanford, the synergy that happens there is that the attending physicians at the VA wind up coming from the faculty and staff at the medical school. So there's this win win of getting first rate medical care at the VA, because it's the best doctors who are the teachers who are probably the most knowledgeable who are doing the major supervising. And from the point of view of the medical school. This is like this immense incredible cesspool of disease and afflictions and things that need looking at and care and learning about that the medical students can go there and just pretty much learn as much as they need to Yeah, first experience I had in Loma Linda was this endocrinologist coming into the room and I immediately liked this guy, because he had on a Hawaiian shirt. Now. So the feeling the sense was, here's a guy who understands he's not standing on ceremony he wants, he wants to feel comfortable. And he certainly wants me to feel comfortable that it didn't mean that stages was in the immediate vibe. And behind him like like a row ducklings falling and mother were all these med students in their little white lab coats, and they were there to see and observe. And so that's where I really got this, this, this, this idea, this sense that, that there was this major, mutually beneficial thing going on at the VA, I got nothing but good things to say about the VA, by the way, they they do an incredible job. They're huge. They're a giant bureaucracy there. They were actually one of the pioneers, what's now called medical informatics, computerized medical record keeping, they were one of the first major systems to develop something like that. And they still still use a version that goes back to their the origins of that so so after I'd gotten involved with the VA, and after I moved to the San Francisco Bay Area from Southern California in 2012, I moved my medical care from the Loma Linda center to the San Francisco center. And in 2006, I'm driving north on the 101 here in Marin County, having a really bad hypoglycemic attack, you know, just what again, one of those perfect storm kind of things. I managed to bounce my car off the K Rail at the on the high speed lane, swerved across four lanes of traffic onto an off ramp, not into the grass on the side of the of the off ramp, I managed to get the engine turned off. And then I passed out and sat there. When I finally came to I find him like, groggy. We've all had that experience coming to looking around trying to figure out where I am, I'm gradually realizing what's going on. It's after dark, I get out of the car, I walked 100 yards back up the off ramp just because I don't I'm not sure where I am. But I had to walk that far to look up at the sign right now. I know it's all off. I call 911 A very nice, very nice, very warm, very, very concerned lady female CHP officer shows up and might decide to my car driver side of my car is all dented and Dang. And was enough in this day and age where that totaled the car. The good news was I wasn't physically injured other than the the the, you know, the immediate short term effects of the of the blood sugar crash. Car had to go to the car graveyard. And the CHP officer looks at me, she says, Now, if you want I can write you a police report. And what she was she couldn't say this explicitly, I'm sure but what she was telling me was, you don't want me to write a police report because if you do, then then you wind up having to go get your face reviewed at the DMV and blah, blah, blah. But since there was no physical injuries, and since there's only one vehicle involved, if they're if they've been more than one vehicle or they've been injured a physical injury, she would have been required to write. But she gave me that choice. And I very, I said thank you very much. I don't think that'll be necessary. We got a tow truck there got the car take care of but this started a point in my thinking, where this is where this brace came into my head about being a support group of one and I'm thinking to myself, I need to find some some help and some support for this because that at that point that was three decades almost of that was 2006. So that was that was a 30 Sorry. It's damn near 30 years. Yeah, yeah, that's that's 20 years in Yeah. So I started looking around. I'm thinking well here. Goodness gracious. I live in Marin County, California. There's a support group here for toenail fungus. You know, I mean, there are there probably is that's it. Got it? Yeah, and get and come to find out there really wasn't really wasn't any type one. There was one at Marine General Hospital that I found out about No, no, he had to be in their system in order not to have to pay a copay not to have to pay a fee to come and attend the meeting. So and it was 35 bucks. I remember this because I got there on a third Wednesday or Thursday evening, whatever it was, walked into this meeting room, which is empty, I sit down. And about 10 minutes after it's posted, this woman comes rushing, and she's a little frantic. And she's, well, the the nurse who was supposed to facilitate this, something had happened. And and so this woman was an LCSW, who had been tasked to go go facilitate the type one diabetes route meeting. And she but turned out she didn't know anything at all about type one. So I wound up sitting there for about half hour, 45 minutes, given her the long elevator speech, given her the initial education about what type one was what it's all about is it's autoimmune disease requires insulin, all this stuff, just like really, wow, that's interesting and asking questions and back and forth. And all the back time, the back of my mind, I'm the only one in the room with her, I kept thinking, I had a check in my pocket for this fee. And we got done talking. So I just kind of took the checkout sit on the table and push it across to order. And she looked at the check. And she looked at me and she had this look at kind of a deer in the headlights look in her eyes like was like, Oh my God, I don't want to take your check, but I don't have any choice. And

Scott Benner 26:24
I thought you were gonna say you married her and ruined her life.

Speaker 1 26:30
She was She didn't fall into that category. There are others, too. But in any event, so that was my my experience initially. And I did eventually find a couple of ways to get connected with community. Certainly here in the Bay Area, the biggest ones are organizations like JDRF and d y f that have both in person and online. Zoom has been this a major you know, it's a it's a cultural paradigm now that if one of the very relatively few good things that came out of out of all the COVID I don't want to say hysteria nonsense. But that's a big part of what's in the back of my head is that this is now a thing, culturally so you and I, for example, now can sit down have this conversation me in my living room you in your in your podcast studio. And it doesn't matter where we are in the world. Right now. It's

Scott Benner 27:22
amazing, I would tell you that what you were looking for back then and eventually found. It exists online. Now to the degree that I don't know if it'll I don't think it would ever kill like in person meetups, but it really does fill a gap for people who are not going to get their car and go meet some people. You know what I mean? And it's a big deal. Because you can also be faceless. Like, that's one of the most valuable things that I've seen is the I have a Facebook group. I think at this point, it has like 47,000 members in it. And it gains 150 new members every actually it's less than every four days. 150 new people, but the people who talk the people who have it in them to be, you know, extroverted, or to even ask a question, even when they're really in trouble they can they need to ask question, it's a small portion of people that are able to do that. But the value for the rest of them that are lurking and watching and reading, they would never ask that question on their own, and yet they get the answer. And that's really wonderful. And they still feel supported, even though the other people there don't know they exist. I didn't know that would happen. I mean, James, you don't know me. But I started the podcast podcast was popular. Somebody at some point said we need a private Facebook group to talk about the podcast. And I did not want that. Like I didn't want any part of being on Facebook and running a group. It all sounded horrible to me. But that group's only gosh, is it maybe four years old? And it's almost got 50,000 People at it? Yeah, remember? Yeah, it just it's crazy. Like it was not a thing I set out to do like the podcast the way the podcast is going. This I did on purpose that like I just happen, you know, so it's great. And I didn't and by the way, James, I didn't know it because of all the weird things and you know, it doesn't get said a lot but of all the weird things. I don't know if diabetes. I don't actually know the personal internal drive of somebody who might need community for that. So it was a blind spot for me. today's podcast is sponsored by the ever since CGM. Boasting a six month sensor. The ever sent CGM offers you these key advantages distinct on body vibe alerts when higher low, a consistent and exceptional accuracy over a six month period. And you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly Your bi weekly hassles of sensor changes. Not the ever since CGM. It's implantable and it's accurate ever since cgm.com/juicebox. The ever since CGM is the first and only long term CGM ever since sits comfortably right under the skin and your upper arm and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off. You're looking for the ever since CGM. Ever since cgm.com/juicebox. I used to hate ordering my daughter's diabetes supplies, and never had a good experience. And it was frustrating. But it hasn't been that way for a while, actually for about three years now. Because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom G seven. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do kind

Speaker 1 32:05
of pick up all kinds of jump off America to go on that. Once I got into this mode of thinking that I've been I've been this the support group of one now for 30 odd years. Time for me not to be a be part of a larger support system. And so one of the things I wound up doing was going back through my resources at the VA. And it turns out again, you know, the VA has gotten mixed messages broadcast and video over the over the years and you give me here and you know, anybody who has any knowledge or subject or opinions about it probably has heard horror stories on the news about somebody having to wait six months to get a, you know, a cardiac appointment, and they die in the emails and stuff like that doesn't happen. Yeah, it does. But I gotta say, my experience, again, has been remarkable has been I got nothing bad thing, I got no bad things at all to say about the VA. And a lot of very good things to say they do an incredible job in a very, very challenging and I'm not just talking about type one, or even diet, type two diabetes, in general, everything about everything that they manage, which is pretty much the entire spectrum of of medical issues that that any medical system in the world, anywhere in the world has to handle in this day and age. And that includes mental health services. So one of the things I wound up doing was getting involved with a program at the San Francisco VA, that makes use of a psychological modality called Cognitive Behavioral Therapy or CBT. And that for me personally, both generally in my life, but But in particular, with regards to managing the diabetes has been a huge, huge benefit. And it's just it's basically a technique that it's a learned technique of dealing with feelings, emotions, and thoughts that are troubling, in a way where you make deliberate conscious choices about how you're going to how you're going to react to I can't stop a thought or a feeling from coming into the back of my head. But I can make a conscious choice about how I'm going to react to that. And over time it becomes a learn to practice thing and it gets into the equivalent of muscle memory or I don't even have to sit go through the chart down and sit and write down okay, what was the bad thought? What's what's a veteran thought or a true thought that might replace what's false about that what's true what's really true? How can I know that that there's this learned process you go through but but it's something I do day in day out moment by moment almost sometimes and particularly as much as anything in with regard to type one that involves having a way of being able to do something that probably in hindsight was not real smart thing to do like eat a whole carton of ice cream just because I want to and then later being able to say you know what, that was really dumb but yes, I know better and, but also more I can do I can do better. To our eyes, can I do do better because I make a conscious choice about this. So this has been a mechanism that, for me has been extraordinarily valuable.

Scott Benner 35:06
And you only know about it because of the VA involvement. Exactly. Yeah, that's correct. Right. So they took a thing that they were developing for people for combat reasons, probably, they developed this thing for reasons probably people with PTSD and stuff like that, right. And then VA, strictly

Speaker 1 35:20
speaking, the VA didn't develop it. It's been a technique. It's been around for a long time. But but there were practices. One practitioner in particular at the VA, who adopted a nurse practitioner there who started a program that has become very successful and it's, it's not directly involved with but it's connected to its affiliated or medically, it's in conjunction also with the mental health issues that VA these is probably best known for trying to handle our is PTSD. So a lot of the guys in my, in my CBT group, were also part of PTSD support groups, they're at VA. So this is, again, the these are this is these are areas where the VA is making huge strides in in providing opportunities for and realizing very positive outcomes in the long run. And they do deal a lot with diabetes all I have a suspicion. Again, I don't have any hard data for this, but the population in general in the world today something what is it one? And I forget how many people are diabetic? What

Scott Benner 36:24
when you count type ones and type twos together? It looks like something

Speaker 1 36:28
like one in 20. Right? Yeah. And and oh, the people who are diabetic, one in 20 of those are type ones, the 19 out of 20 are, these are very rough, round numbers. But it's like 5% of diabetics are type 190 5% of diabetics, type two.

Scott Benner 36:44
Well, a number of years ago, there was a big push to get people to realize when they were pre diabetic, and I've kind of haven't heard as much about it at this point. I think it did its job that everybody knows, hey, my one C six, it shouldn't be you know what I mean? Like that kind of thing. But they were I mean, I forget the numbers there. But the staggering. There were staggering numbers about people who they thought had pre diabetes just based on the data that they could see. Yeah,

Speaker 1 37:08
yeah. So point being that at the VA, they clearly deal with a lot of adult diabetes, type two diabetes. Yeah, I don't think they have as large a percentage of diabetics that are type one at the VA for the simple reason that you don't get VA care unless you're previously active duty or lesser previously in the military. And if you're type one diabetic to begin with, you're not going to get into the military. That's a that's a medical exclusion. If you become type one, while you're in the military, then you're going to get discharged. Or at least in my case, the what you were talking about earlier about maybe shutting you off into a job that's,

Scott Benner 37:45
like combat related. Exactly.

Speaker 1 37:46
Yeah, something like that. There may be more considerations like these days, but still, I gotta believe that that probably skews the that percentage within the population that are treated medically at the VA, for service connected disability, so much smaller percentage of diabetics, there are type one that are the type of diabetics in the in the, in the population of the world as a whole. So in that sense, that's another reason why I'm very grateful to the VA because, in a lot of ways, I'm, I'm this outlier, I'm like this, this came out of left field. Yeah, I have type one diabetes, but look where I was when it happened. And look, what, what, how, what path I followed afterwards. That's where I wound up where I am today, the in 2007, my CDE at the VA, who are who? She's a nurse, she also happens to be a type one diabetic. And oddly, since she's not a veteran, she doesn't get care. At the VA. She gets it through Kaiser or something. But she comes running down the hallway with a magazine me Have you seen this? Have you seen this? And it was a magazine? ad for the Dexcom? System? Seven? I'm not sure I was the first I believe I was the first but if I wasn't, I was one of the very first patients ever at the VA to use the Dexcom system seven in 2007. And that was a game changer. Oh

Scott Benner 39:06
yeah. So that'll confuse people who are in or newer diagnosed. Right now the Dexcom G seven is the latest version, right? When they came out, they called it the it was the Dexcom seven and they call it the seven plus, and then all of a sudden, they call

Speaker 1 39:22
the system seven, right? And then they went to G four eventually, it had a different form factor than I mean, eventually they move to the G four and then the G five, which are the ones that are are the same form factors as the G six G G seven is the new one. That's that's the single insertion, right? Integrated transmitter sensor. Yeah. So I got I got started fairly early with the water now become the conventional CGM sensors at the VA. That's

Scott Benner 39:53
something that's great. Yeah, I mean, you've had a great experience and they you know, it's like anything else online. You're gonna hear bad things about big systems because some people are gonna have bad, you know, interactions and then that's going to be their report. Also, I think people who have bad times are generally more vociferous than people who you know, have good. The

Speaker 1 40:11
analogy I use is that anytime an airliner crashes and 500 people are killed all that's headline news, and it's on the news for six days, you have never ever in your life heard a news broadcast and said, Good evening, ladies, gentlemen, they 35,462 commercial airline flights took off and landed safely with no one being injured in any way, shape or form.

Scott Benner 40:31
It's not exactly how you will never hear that that

Unknown Speaker 40:34
headline, it bleeds it leads right now.

Scott Benner 40:36
It's just how it goes, right? I mean, I've heard what you said, like, I've heard enough news stories about somebody involved with the VA that got screwed over or something like that, or they died or had an event that again, it's news. So that's why you hear about it. Yeah,

Speaker 1 40:48
exactly. And I don't believe it's typical. And I mean, again, my experience is anecdotal. I also see and talk to other people, or their experiences, we get really first rate medical texts on.

Scott Benner 41:03
I mean, honestly, it's not just excellent. But how long? Were you in the Naval Academy for as a life partner? Yeah, for three or four years of effort you getting paid back for the next 40 years? That's not bad. For sure.

Speaker 1 41:14
There was a time when I thought in terms of who do how do I feel about the US taxpayers paying for my medical care? And then I realized, wait a minute, I'm a taxpayer too, so I'm just gonna count on my on my accounting sheet. Everything goes to federal taxes. That's my medical

Scott Benner 41:29
back to your to your diabetes. So at what point do you find CGM pretty quickly? What's your experience having so many decades without it and then having one of the first CGM is is it an eye opening moment for you? Does it drastically change how you care for yourself? What happened in there?

Speaker 1 41:47
It's eye opening, but it's eye opening in a gradual way. Yeah, it's there's this if you're a tech, if you're a tech, geeky type of person at all, which I certainly am. And anytime you get a new toy, you're like, Ooh, this is so cool. And so that first year that I had that system seven, I think my agency dropped from over seven to the first one I had after that was like, 5.80.

Scott Benner 42:11
Wow, why, what, what changed?

Speaker 1 42:14
What changed was, I could see these numbers, I could see this graph, and see that if I did this, wow, it does that. And so if I don't do this, or do something a little different, it doesn't do that it does this. And and that was fascinating, A and B, I defy you to ever find a type one diabetic, who's had a serious hypoglycemic episode and says they enjoyed it.

Scott Benner 42:38
Avoiding them is also a big part of it in technology, that's for sure. It's sleep, too, right, like sounder sleep?

Unknown Speaker 42:43
Well,

Scott Benner 42:45
we're never going away. Yeah,

Speaker 1 42:47
it's, again, things are gradual. But it definitely was an eye opener. And it was the beginning of, of a newer part of my path and my journey to where I am today, which is I'm currently use for the very first time my wife ever started using a pump, in 2018, was when the Medtronic 670 G, AI D system came on the market that was really the first hybrid closed loop system to make the market. And we I've been talking with my endo and my CD at the VA. Does it make sense to go to a pump? Well, we got this new thing coming. So let's kind of wait until that that whole new book, hybrid post loops, and then think about making the jump. And we did and again, that was a major improvement in in my overall error. Now, the the flip side of that coin is that the both that first one of yours, you're talking about being MDI and clueless, basically, you know, gradually, slowly over time, I lose weight, I lose, being in physical shape gradually, to a degree. These things are things I'm not happy about, necessarily, but they're also things that partly because of what I was talking about earlier with the CBT, I'm able to look at and say, Okay, I maybe I could very arguably have done better. Yes. Is that is that a a true statement? It absolutely is. But so if I didn't do better, should I feel guilty about that? And the answer that is an absolute NO. And I'm able to get there, mainly because I know that however well or poorly I've done I've done by and large, the best I can. And I am already six years almost into this. I'm going to be in Boston in 2028 to get my 50 year gold medal. I

Scott Benner 44:33
want to ask you, do you have any symptoms of long term complications? Not

Speaker 1 44:38
really. The main things I have, at this point at this stage in my in my progress, have gradually developed insulin resistance over time. So my TDD these days is between 80 and 100 units a day, way more insulin than I've seen why to be trained.

Scott Benner 44:54
Let me tell you something, man, I go back to that VA and tell them you want Is that bound or we go vie for weight loss and weight? And do you see how your insulin needs go down? Yeah,

Speaker 1 45:06
well, we're already having that discussion. Good, good. But there's so many GLP one antagonists out there that tell me again, the ones the names in the wild

Scott Benner 45:14
If so, you're only going to qualify for weight, because you're type one, so they won't give you Manjaro. No, but the Manjaro knows for type two right now, it's classified for weight loss as zip bound. And you get a GLP, one with a GI p at the same time,

Speaker 1 45:31
right? You're right. Yeah, yeah. I'm not up to speed on the whole subject, I get lost in the, in the trade names for all the all the drugs, I

Scott Benner 45:40
am two weeks shy of a year on a GLP. I'm 47 pounds lighter today than I was last year. And my daughter who's 20, is taking just a small dose of ozempic right now, once a week, and her insulin needs went down drastically. I had an episode on last week with a mother of a 15 year old who had type one for three years. And her daily insulin needs went from like 70 down to seven.

Speaker 1 46:06
Well, what am I perennial, and this is also that's not just me, the community in general, one of our perennial complaints has been the lag time between the realization of the efficacy or the potential efficacy and then and, and the value of pursuing investigation into the efficacy of different treatment modalities, and how slow it takes. So the all you have in the entire amount has to do with what's called labeling and the FDA approvals, all of which that's kind of one subject. So it's very clear that type one diabetics over a long period of time they develop insulin resistance, which is the principal characteristic type two diabetes. So why wouldn't it make sense to

Scott Benner 46:46
you every year or to from that being reclassified? I think because of the insurance hammering but I'm, I'm gonna tell you something, I don't usually, I guess it's not true. But I don't usually take credit for a lot of things that I do. I am out in front on the GL piece, like I am going to talk about it moving forward. I've taken some crap from some bro science people online who think like, you know, it makes you muscle waist or your bone density goes down, or whatever they thought the first day it came out and one of the big podcasters yelled about it one day or something. If you haven't used it, you don't know what you're talking about. First of all, I can't tell you how many people with type one diabetes are just saying things like 20% reduction in my insulin needs, or I dropped 30 pounds or how about like that voracious hunger that a type one can feel because of the lack of, you know, Amylin, and stuff like that. And now that's gone, and all the value it's bringing, and how about a lot of all that

Speaker 1 47:39
all that is part of where I am right at this moment? Yeah, of course. And so that's part of my next My next step is is pursuing the GOP once you've

Scott Benner 47:46
no idea, James, in just a couple of weeks on it, how much different you'll feel. It's fascinating. I had to adjust my daughter's insulin a week into the first injection. I was

Speaker 1 47:59
always the only thing I'm a little worried about right now is wait a minute, I gotta go back to a whole nother cycle of figuring out insulin doses and carb ratios and Basal setups. So but I've got the tools to do that with too. So

Scott Benner 48:16
yeah, you do. We'll say you you tried 670 G back then. But what are you using right now?

Speaker 1 48:20
Well, I switched from the six, seven D to the 780, late last summer and that was subsequent to being involved in a clinical trial over at Diablo clinical research, right? That use the 780 G but the trial had to do with a new sensor system that Medtronic is coming out with the time they call the DS four sensor it says it's it's Medtronic the answer to the Dexcom G seven and it has just now come out and it's actually available in Europe now. And they call it this in Clara. Okay, so that's it's a single insertion and it for me it works awesome. And, and I had enough time to while I was on the study to get the VA to pony up and send me a six, seven AVG and started some supplies a little bit while or a month or two while I was on the on the study. You know, because type one of the things we have to do we absolutely have to do is you want extra of every sensors, decision sets, insulin you want everything in, in in supply and more than you need. Until you get your next set of refills.

Scott Benner 49:26
It'll definitely be in America soon enough.

Speaker 1 49:28
Yeah, I will. And the results I got were I went from being on the 670 Somewhere in the mid 70. Call it 75% Time and range. Yeah been in the mid to high 80s And that's where I am right now on the with my own 780. But using the slightly older sensor, The Guardian, The

Scott Benner 49:49
Seven ATG. I hear a lot of good things about it actually from people who use it. I

Speaker 1 49:53
also was involved in 2020 20 with a study with Dr. Buckingham. At Stanford testing vetronics, seven day infusion set, I got really good results with that. What I'm using right now is the Medtronic 780 G, The Guardian Force Sensor and the extended were infusion set, which I helped. I was part of the asset. Yeah. Part of part of the cohort, the group that prove that that works. Yeah,

Scott Benner 50:21
I'm looking here at mini med seven. ATG. This is a Europe system with a simpler a sync sensor will be available in Europe via limited release in spring 2024. Yeah, you got a little ways to get it over to America, then probably,

Speaker 1 50:35
you know what it'll take as long as it takes. But when it gets here, it'll be another major game changer. It's yeah, where I am right now is I can change my entire infusion set in my, in my sensors system in about 10 or 15 minutes at most. Yeah, that's not counting having to recharge the transmitter, which will not be the case with a simpler sensor once it's

Scott Benner 50:56
been disposable, like the libre or the Dexcom. I would say James, I'm sorry. Medtronic is the sponsor of the podcast, as is Dexcom. And so I should just say that, ya know, I think this is terrific. It's it took them a little while, but they're, they're coming back pretty strong. Yeah, it's

Speaker 1 51:12
pretty clear that what Medtronic is having with the supplier is not just the newest sensor for there, they've always kind of been in this we're using our own sensor we're not integrating with with Dexcom. But it's pretty clear that what they're doing with some player is going head to head with the Dexcom G seven. Oh, for sure. In both the pump integrated, and then the standalone markets,

Scott Benner 51:34
yeah, they're just trying to drive people to their pump to they're not going to they're never going to you know, be a situation where you can hook up a 780 G to A libre, you know, for example,

Speaker 1 51:46
which actually begs kind of begs the question of this. Another popular topic in the community is interoperability between devices and the whole reason for the existence of things like title, which I'm a huge fan of, and I've met and, and listened to Howard luck talk on a couple of occasions and had a chance, actually a diabetes camp last summer up in Bearskin meadow to chat with him a little bit very cool guy. He's been on the show. Yeah, yeah. The whole idea that these devices should all exist in their maybe their separate little niches and it should be possible. This is this is my rant. It should be possible to go out and buy whatever palm, whatever sensor, whatever system you want, that works for you. And what works for you includes things like how well does the adhesive protect your skin, you know, so if the if Medtronic sensor makes you get alternative red, but Dexcom doesn't, you got to be able to use the Dexcom sensor with Medtronic pump frame.

Scott Benner 52:44
Well discuss Yeah, Medtronic, like they've got a pretty big market share. So I think they think, I mean, if I'm in their head, I think I can make people use our pump. As long as we come along and get a CGM, by the way they they get screwed. Here's one thing and I listen, I've made fun of Medtronic over the years for that, you know, for the Harpoon, you know, and everything, but they were first. You did it like so. Thank you. You don't I mean, they're gonna first Yeah, the

Speaker 1 53:09
670 was for all the stuff you can criticize about it. It was a game changer.

Scott Benner 53:15
Yeah. Right. And, you know, first one is gonna get picked by the shark. So like, Yeah, I mean, Fair's fair. But it also took them. I mean, in my opinion, it took a little long to get to this simpler thing. Like, it's, you know, I don't know what happened. You

Speaker 1 53:29
know, I, none of us have direct insight into the vagaries of of getting FDA approvals and what you have to do, moment by moment, by DPL, to get get approvals. And Elijah's and I think that as a society, we're, we're way too deep into that. That's just my personal opinion too deep into I'm sorry, into, the things are over regulated. Yeah. Oh, and general, but specifically, when it comes to, you know, if there's something that's available, that's going to be helpful, that's going to make my life better, I'd be able to make an informed purchase decision, you know, sure. Talk with a doctor or with somebody with a practitioner, a professional practitioner who is knowledgeable on the subject, and it can give good advice.

Scott Benner 54:16
Well, go ahead and find one of them. James,

Speaker 1 54:19
why don't you have a couple you actually have a couple? at the VA, there's plenty out there. The problem is finding a man also, this is another popular topic of conversation, but I you know, I'm, I'm, I'm depressed because I can't my doctor doesn't appear to be listening to me. Fire the

Scott Benner 54:38
doctor. Yeah. Now I know it's hard to get people to move on to different practitioner. Also, some people live in places where there's just no options. Like some people are stuck with what they're stuck with. But I take your point. Yeah. And

Speaker 1 54:50
again, the there's no good excuse in this day and age why they're stuck in it not because of their choice or because of anything that's negative about them that stuck in there. that choice, because there's only one little hospital or clinic nearby. But we live in a world where, like we've talked earlier, this connectivity exists in a way, and functions in a way where it's now possible to know. And if you don't realize that if you're not aware of that, then then you have no pathway out of that this sense of depression of I don't have any other choices. But wait a minute, maybe I do. Okay, well, maybe maybe I need to think about going out and making some searches on here and talking to people and getting into the group on on Facebook and asking questions and finding, finding a way and Oh, who's the other side of the country? But who's on my insurance plan? And who I can talk to remotely?

Scott Benner 55:42
Yeah, but it's a lot. It's a work. I think some people are overwhelmed, too. And then I wouldn't be surprised you get trapped in that cycle of like, this isn't going well, I've got no hope. I don't know what to do. They don't know what to tell me. My health is slipping backwards, what am I gonna go find a guy across? It's hard, you know. So I've done I mean, I put up a list of endos that people like have good success with, I try to keep an active list on my website of that. But still, even that is like, I can't be out there every day reminding somebody, Hey, there's a list here. Like it's just to never ending battle to keep the information in front of people to keep them motivated to try to do those things that are difficult, especially when they're getting up in the morning and going to work and raising kids. And it's a tough, tough slog. You know, it really is, what else is on that list of years over there.

Speaker 1 56:29
I got to thank you. For one thing. I think I mentioned I started listening to you a while back to some of your pro series. And there was one discussion in there about Pre-Bolus Saying that, when I listened to that, I mean, I heard the term and and yeah, it kind of makes sense. And it's one thing to hear something intellectually, and think about it and realize that makes it but it's another thing to kind of really get it kind of ingrained in you. And I started doing that. And that has made a huge improvement. And not not in not overshooting you know by Bolus, right when I'm meeting 80 grams of carbohydrates that I'm gonna, I'm gonna be up over 200 Yeah, if I Bolus 20 minutes before I go up some but not a lot. Yeah. And that's been here. So thank you for that. Well,

Scott Benner 57:13
first of all, it's my pleasure. But secondly, you're 46 years with diabetes. And I'm the first time somebody said Pre-Bolus to you? No,

Speaker 1 57:19
no, I it's not that I've never heard the term. It's that it's one thing to hear a concept. And it's another thing to internalize it.

Scott Benner 57:26
So you think that listening to the podcast made you go alright, I'll try it. Yeah, yeah. Okay. I think so.

Speaker 1 57:33
And that was you and I can't remember the woman you were just got through it to the doctor who you.

Scott Benner 57:36
She's a CD. She's also got type one. Yeah, right. Right. Right.

Speaker 1 57:40
So another thing I'm kind of on my list here has to do with the general subject. And I've mentioned a couple of my own participation in this but get involved with this is something I would recommend to anybody who's type one, who is in the process of, of developing and pressing in the direction of more confidence about their ability to manage the disease. First of all, I heard a lecture by a woman named Jessica Bernstein in 2007, or 2008. She's a psychologist over nice Bay, had been type one since she was two or three years old. And she made a point about the word control. And how that steeped in that word is this, this inference, this idea of guilt burden. If I'm not in good control, it's because I'm doing something wrong. And so I'm therefore guilty. You said, let's throw out the word control. Let's let's, because there are times there is we all know, there are times then circumstances where things go haywire. And it's not because of anything I did. That's, that's bad or wrong. It's just that that's, that's the nature of the of the disease, let's substitute the word management. So in my own management of, of this disease, you get to a point where you get a little bit more confident about it. And for me, that took 40 years, to get to that point, really, really, frankly, there's always more to learn. There's always more to know, there's always new epiphanies to come to and in a way that's kind of as as an engineer and as a as kind of a geeky guy that, to me is fascinating. And fun. I'm my own guinea pig. And I get to see the sometimes some days things work. Well, sometimes they don't. But on the days where things work, well I get to say to myself, damn, I'm really getting better at this seems to

Scott Benner 59:28
ever wonder if you were diagnosed with this technology, how quickly you would have, like, come to that, because I'm, I mean, that's a long time.

Speaker 1 59:38
I don't know the answer to that. No, I know. I'd like to believe that it would be been a lot quicker because of the presence of technology. But I'm not a humble person. I don't try to be but at the same time, I try to be as realistic as I can. Some days it works. Some days it doesn't. About reflecting on my own Well, you know, my own limitations as a human, my own and my abilities. And so the short answer to your question is I'd like to believe yes. That had had I've been diagnosed, and this whole timeframe for me move forward 30 or 40 years. And yeah, I would write today I'd be where I am, but in a lot shorter, quit anatomical order. Okay, great. But at this point, in a way, that doesn't matter, because I am where I am right now. And I'm not planning on going anywhere. I'm not planning on, you know, there's going to be there's going to be a point in time in the not terribly distant future, where there are people alive who are type one diabetics who have been that for over a century, as part of that is because lifespans in general are increasing. And part of that is because the ability to survive and manage type one, diabetes for long periods of time has been increasing and improving. And we keep hearing, you know, there's a standard trope in the community about heroes five years away, and this year has been five years away for

Scott Benner 1:00:59
780 90 years.

Speaker 1 1:01:04
Today, the cure is five years, however long somebody's been telling us now, it's not unreasonable to expect that 30 years from now the cure is still going to be five years away. Okay. Great. Just take that as a as a given, which means that like I say, there are going to be people that are going to pass the century mark, you know, Johnson is going to have to think about what's gold metals and in Platinum metals now they're going to come up with some people are really in metals or something. Yeah.

Scott Benner 1:01:28
Well, have you ever seen somebody with a 75 year metal?

Speaker 1 1:01:31
I haven't, but I've known a couple of people. I know at least one person Jack Rosewall is there's a jack Okay, he's a friend of Stephen dinars. Okay. To amazing and he's, he's obviously I don't know if he has a 75 year medal or not, but I know he's overseeing

Scott Benner 1:01:45
I don't know if they if Lily makes the metal or is it still Lily or did somebody else pick it up?

Speaker 1 1:01:49
Well, Jocelyn Lilina has a metal program in Joslin diabetes Center in Boston has a metal program. I think Jocelyn has a 75 year medal. Okay, I'm planning to get my 50 year metal gold medal there. Again, 20. Good

Scott Benner 1:02:01
for you. When you guys do you talk about people, you know, like how actively Are you friends? Are you text friends? Are you at a meeting once a month, or just people I've met

Speaker 1 1:02:11
we're friends through connections in through diabetes community connection, so it's online, every month, here in the Bay Area. JDRF and dy have both have an online meeting. And dy F also has a couple of has an in person meeting our friend Jack down in the peninsula has both an in person meeting and a an A in a Zoom meeting that he does once a month. So there's a lot of there are a lot of opportunities here in the Bay Area. And by extension, now we get people in, in the Zoom meetings who are from everywhere country, right? Again, that's that connectivity, technology thing that exists today. So it's primarily in that context. I've actually met Steven in person for the first time last summer up at diabetes camp, it's another. So there are a lot of different venues, both online and in person where the community can come together. But those are principally where I know, my diabetes friends, I don't in general know them outside those those spaces.

Scott Benner 1:03:10
Yeah, it's still hard, isn't it? Even with people wearing technology that you can see, it's still not a thing that people run around broadcasting constantly.

Speaker 1 1:03:19
Another one of the vent, or another one of the arenas if you will, but I'm currently immersed in is this being single and looking for the find somebody to date? So kind of for my ideal would be somebody who's type one who over attracted to and who condensed west coast swing

Scott Benner 1:03:39
and gets your engineering might get? Yeah,

Speaker 1 1:03:42
that's the key thing. That's really that's what's so attractive about this whole idea of the community, the very first time I ever walked into a room and sat down where there was a support group meeting. And all I had to say was I'm James, I'm a type one diabetic. Everybody goes, Oh, yeah. And, you know, there's a lot of parallels. There's a lot of I found a lot of interesting parallels between that kind of a setting and what are typically known as 12 Step programs, because there's a way in which it's not the same reason for being there. It's that seems kinda reason for being there. But there's a way in which the dynamic works, which is similar, which is I get to sit here and talk about things, but I wouldn't just necessarily talk in general. But But I but I feel comfortable and safe doing so because everybody's sitting around me here has gone. Oh, yeah. Non Yeah. Oh, yeah. I get that. Oh, yeah. They get it without me even having to explain.

Scott Benner 1:04:32
Right. And even if your experience isn't theirs, they can still make the connection to exactly yeah, to say I see where he's coming from even though I haven't had this experience. Yeah, yeah. No, it's it's valuable. Like I told you earlier. It's valuable in a way that I didn't understand at the beginning. I do very much understand it now.

Speaker 1 1:04:49
Well, and I've I've said before that if I ever met someone just offhand, who had just been diagnosed with type one diabetes, that very, there are two things I'd tell him and I'd insist that they I look me in the eye and and hear and understand. The first one is, this is a century ago, this was the Jetsons today, it is not. It can be managed. That's number one. Number two, you're not alone.

Scott Benner 1:05:13
That's important to know.

Speaker 1 1:05:15
There is a community as both of those. Those are the two single most important things for any newly diagnosed type one diabetic to know and understand.

Scott Benner 1:05:22
No, I agree with you very much, James, I appreciate you coming on and doing this with me. Thank you. This was a pleasure has been mine. We're very You're very kind. It's, it's interesting to hear, by the way, I, I have two possible titles written down for your episode. Almost Ensign. And then I don't know if you're gonna get this even but toe fungus support.

Unknown Speaker 1:05:48
I think the almost Ensign probably is yeah, that's

Scott Benner 1:05:50
where I'm gonna lean. But you'd have to really be listening to hear at one point, you said in the Bay Area, we have support groups or everything like toe fungus support, and you rolled right through it very quickly. And I was like, God,

Speaker 1 1:06:00
but you said that a moment that you did, as you said that everyone? Yeah, I did say. I remember what I said. Oh,

Scott Benner 1:06:08
no, I imagine you do. I'm trying to imagine a person listening going. toe fungus? And when's this gonna come up? Can I ask you if you don't get type one diabetes? Like really looking back at yourself? Honestly, could you have made it through the astronaut program? You think you were a real candidate for that? Yes,

Speaker 1 1:06:26
no. And again, part of that depends on timing it at the time, I had a focus and a dedication. That's really where I wanted to go. And I knew enough about it, I know knew enough at the time. When you're a teenager, you think you know everything when you're graduated from high school, you got the role by the tail, you know, and, and the sad truth is, you don't know why. But you don't know that You Don't Know Jack until you get to, you know, my or your age at least. And then you start to get this, this worry about maybe I don't quite know, Jack, I believe or whatever, then today, the world, that world is different. It's very different in a lot of ways that I'm quite vocal and opinionated about and one of which is I don't think the federal government ought to be involved in race travel at all. I'm huge fan of what Mr. Musk is doing with with SpaceX. And I think that's where the future of space travel is going to be. And if I wind up getting involved in it, personally, I commented in about a year ago in a in an online type one group, I said, I'm going to be the first type Dolan diabetic on Mars. And that was said, partly to elicit a humorous response. But there's a part of me that's actually serious about that. You know, I think that would I that's something I alien landed, sought flying saucer landed on my lawn, and the guy stepped out and said, Would you like a ride? I'd say bye.

Scott Benner 1:07:53
All right on to me and my insulin.

Unknown Speaker 1:07:57
Let me grab my coffee with you.

Scott Benner 1:07:59
I can't think of the name of the episode but I've had a type one on who she actually flies this the International Space Station.

Unknown Speaker 1:08:08
Oh, Haley, Haley spears.

Scott Benner 1:08:10
She's I don't even know if that's her. I can't I may be an Amy

Speaker 1 1:08:14
white headed out. I have a good friend Haley who's a type one. She's chosen fly. And she's a she's one of the backroom flight controllers for the ISS in Houston. And I know her through a program called Space settlement design competition, which is a way which I'm involved with, my younger brother has been involved with for 30 years, which is a program where high school kids get together over a weekend to design a space settlement. And as adults have the job of on one hand cat herding, and on the other hand, making sure they don't run off the rails. Technically,

Scott Benner 1:08:44
can I tell you how crazy it is that that you just said that? That's not the person I've have on. So April Blackwell. She's the NASA attitude determination and control officer, which means she pilots the International Space Station. Okay. I think there are two type ones doing that. That's amazing.

Speaker 1 1:09:00
Well, those are jobs you can do sitting at a control console. Yep. And a Control Center in Houston. And if you suddenly get a blood sugar crash, your hands aren't on a control stick. Right? You're not. You can't be a commercial airline pilot with type one diabetes, because of the risk of having a sudden accident.

Scott Benner 1:09:19
I've had one on they just they just let this guy do it. Really? Yeah. It just happened not that long ago.

Speaker 1 1:09:25
Well, that's recent. That's not historically that's not the case.

Scott Benner 1:09:30
No, historically, it has absolutely not been the case. But what's the

Speaker 1 1:09:34
guy who is also why historically, as a type one diabetic, graduating from the Naval Academy in 1978, I can't be a naval officer.

Scott Benner 1:09:39
Yeah, he so Pietro, it's episode 332. B, I think is the first type one to hold a first class medical certification from the FAA. Wow. Yeah. So he's, uh, I've had him on as well. Well,

Speaker 1 1:09:53
that that is that's history changing because Oh, yeah. In my early adulthood, one of the things I looked at as I've always wanted to get a private pilot's license. And it turned out at that time I had a friend who owned a small plane and he would take me down. When I worked at Rockwell we go down to Long Beach and he put me in the in the ease instructor, he put me in the left seat and plane off circle landed to get off the circle. And he looks at me says you're ready to solo and I said, seriously? He said, Yeah. And so we're driving back to the office and this this like, hammer Bong thought goes off my head, I'm wonder would be diabetic fat. How that how to fix that and turned out the time the answer was it was a mandatory denial for or not anymore. Is the guy anymore. Yeah, that's recent. That's, that's not my experience, my life experiences that was part of that barrier. There's down in front of me that door is coming up now a little bit. Yep. I'm happy. I'm glad. But that part of my life is,

Scott Benner 1:10:47
you know, looking to be a pilot at this point. Yeah. Yeah. To get

Unknown Speaker 1:10:51
to Mars at some point, but I think I can hit your eyes or

Scott Benner 1:10:53
Oren Lieberman. He works at CNN. I forget what I used to be the Israel reporter. I think he does something else now. But he's a he's a guy who, you know, flies his own plane. And, you know, gets around a lot in a small plane. So yeah, I mean, it's obviously things are getting easier if you listen to Petros interview, I forget the the salient details, but he somehow knew somebody at the FAA, and he could kind of start that conversation. I think that's kind of how it got the attention of them. They're like, Oh, CGM don't want

Speaker 1 1:11:25
him that. I'm glad he did that. And that's actually that's another reflection of how the the steady advances in both knowledge and technology have made it possible for those barriers. Were down and solid. And whenever removal to very slowly and very gradually now start coming up, right? I'm glad of that. Yeah, me

Scott Benner 1:11:47
too. No, absolutely. It's these happenstance IID, like connections where you just go, wow, if that person wasn't in that room to say that thing to that they would never know, it would just go on and on like that. But he knew about CGM good pilot, he wanted to be a commercial airline pilot, started a conversation with somebody and it took years and it snowballed into something. So I was in

Speaker 1 1:12:09
Dallas, January, and one of the things I did was meet up with a buddy of mine from Annapolis, who I had not seen in 40 years, but we've been just best friends for a long time. And he's a retired Southwest Airlines pilot, and he doesn't fly anymore because of mandatory retirement age. The FAA says if you're 65, you're no longer you can't be a type one or not. But he works at the Southwest headquarters facilities are Love Field. And so he took me into the facility took me into the flight simulator. And I actually took off and landed a 737 Max eight in this weather without a cover without

Scott Benner 1:12:47
turning rains for you.

Speaker 1 1:12:50
Everybody who I've told that story to says, oh, and the doors didn't fall off. And I said no.

Scott Benner 1:12:56
It's amazing. Well, you've had a life. You certainly haven't. You're still going very strong. How old? Are you?

Unknown Speaker 1:13:00
Oh, I'll be 68 in March. Good for you.

Scott Benner 1:13:03
That's wonderful. All right. Well, listen, James, good luck with everything, not least of which is finding a lady. Yeah.

Unknown Speaker 1:13:11
Scott actually had a question for you. Okay,

Scott Benner 1:13:13
nobody ever,

Speaker 1 1:13:14
I'm gonna put you on the spot a little bit. This is a thought that's been in my mind. You know, I've gotten to know a little bit about you and about your circumstances about how you came to all this, which really has to do with your daughter. Sure, fairly unambiguously. And it's also very clear that for a very long time you have been her pancreas. There's no question about that. And so the question, really, and I don't mean this to be confrontational, but it's this is how my mind works. I see something that I go, I wonder about. And the thing I wonder about is, and this thought has to have occurred to you, and you may have even commented on this or had discussions about this on your podcast, but at some point Arden is she's already an adult. Yes, legally. And at some point, she's got to be in charge all that. And maybe that's already happened, but for you, what's it like to have to consider? You know, I've been this my little girl's pancreas, and she was a baby. Yeah. And at some point, I have to let go that, to me, that's that. I'm thinking, what your thoughts and feelings are about that? And

Scott Benner 1:14:17
of course, well, I'd be happy to tell you. So. First of all, she is she takes care of herself. Now. I don't really have anything to do with it.

Unknown Speaker 1:14:25
Why? Because I noticed you earlier you always she's gonna.

Scott Benner 1:14:28
I do have like, I mean, I didn't contact her. But I there's a thing on my desk that just changes color when her blood sugar. It's called. It's called glucose. And, and it went to it got red, and I thought, oh, that's strange. Like time of day, I didn't expect her to be low around here. And I before you and I started recording, I picked up a piece of software that I have, and I saw that she had just recently Bolus for something and I thought, Oh, she probably just got it a couple of minutes early on her Pre-Bolus And she's fine. She's actually 140 right now. I mean, she and I haven't talked about her diabetes beyond I sent her a text yesterday and said, Hey, I'd bail on this pump site if I was you. And then she did. We didn't actually talk back and forth about it. The last time I've had like, real connection to like telling her about something is, you know, a low in the middle of the night that I woke up for. And, you know, I don't I made sure she was awake. I helped her adjust her settings when she went on the GLP medication. That's not something, you know, it's unfair, I think she could have figured it out. But I just said to her, like, you have to make your insulin sensitivity weaker. You know, and, you know, what is it now, and let's try this. And we just kind of moved it by 10%. Take a look and move it again. Other than that, I don't really have anything to do with it anymore.

Speaker 1 1:15:43
So, and, again, not to be confrontational, not

Scott Benner 1:15:48
by the way, I want you to know, James, this is a very, I hope this doesn't hurt your feelings. This is a very common question from old time type ones to me. Yeah, yeah. Well,

Speaker 1 1:15:57
so. So my way of thinking there's a difference between having been the pancreas and backing off and occasionally having a conversation. There's a difference between that and saying, You know what, I love you, dear, but you're on your own.

Scott Benner 1:16:10
So I kind of subscribe to the idea that people's brains aren't fully formed in their early 20s yet, and I've seen it I've seen a fair amount of research that says that people with type one diabetes benefit from parental support into their mid 20s. Okay, like, and I don't mean, like, hey, Bolus now or like, you know, change your pump. Like, I don't remind her to change her pot. I don't remind her about her CGM. Like she does that on her own. Right? She will come home from college once in a while and look at me and go, Hey, could you do this for a couple of days? Because I need a break. Like that kind of stuff. But you know, or will once in a while when she's home, we'll be in a restaurant, and I'll see your phone come across the table. And she goes, Why don't you get this one, you know, like something like that about her bowl, right. But for the

Speaker 1 1:16:56
most part, she's she's cool with you being with it being a collaboration,

Scott Benner 1:17:01
she doesn't seem to care. Now, I've made significant adjustments along the way I didn't go from like who I was when she was nine to who I was when she was 20. Like in a snap. The way I've always talked about on the podcast, and the way I genuinely believe in it, is that I don't think that teaching someone about their diabetes is any different than teaching someone about anything. Like you don't just scream a bunch of bullet points at them and go now it's your turn. You know, like, it's a very slow transfer of knowledge, I think is a lot of repetition. It's a lot of like, you know, Hey, did you Bolus for this when she was eight? You did? Great. That's great. How much did you do that? sighs I was thinking that much to like, you know, and then you don't talk about it again. Right. And then on and on and online. For years, like it's, it's always been my desire, and my goal to make it a very slow handoff so that she didn't notice that happen. So that didn't feel like at any point, you know, the fulcrum shifted, and all the weight landed on her and

Speaker 1 1:17:58
argued, okay, I understand. And that's actually a good answer the question kind of the way I asked it, have you ever actually talked with her explicitly on that specific topic? Oh,

Scott Benner 1:18:06
yeah, we've talked a couple of times, we've had a number of like, I don't know what you would call them, like, touch point moments along the years, because she was diagnosed when she was two. So and I as a stay at home dad, so I was with her the whole time. There's a couple of times we've sat down and I've said, Hey, I need you to take this more seriously. Or you see this here, like that can't happen, or we don't not Bolus, a blood sugar that goes over this number. Like we don't, we don't sit and that's then the non negotiable. We don't sit and watch a number that high. And so we go along the way. And we've sat down at times, and I've said, Look, you're getting older now. You know, there's, I see this one part of this, you don't seem to understand we need to talk about it, and sat down and we went over this whole thing. There's still things like she's still a kid. Like once in a while. She'll say something that like, like shocks the hell out of you. Like I forgot how to use my glucagon, I had to look into it again, or, you know, like a shot in my head, you forget that. For the most part, she's, it's gone the way I've expected it to go. But it's been a lot of thoughtful, quiet behind the scenes effort from my wife and I, and a lot of her being very receptive along the way, like we've had moments where she doesn't want to hear about it from me or something like that. But we've never had any long drug out like battles about it or anything like that. And I also know window like, I'm not good about it with my wife. Still, I'm still learning. I've only been married for 27 years. But with her when I see the resistance come from her I know to like back up, because nothing long term and good is gonna come from us like battling about one small, unimportant moment, you know what I mean? And so and,

Speaker 1 1:19:42
you know, to be fair, and in the interest of truth in advertising, I'm not apparent so I don't have the direct experience of being in the positions. I can't assert authority in that regard, but I am I count myself A fairly careful observer of how we humans interact. And I really think that, you know, parenting has got to be one of the hardest jobs to do. And one of the things I'm very grateful for in my life, also allied parents, in particular, my mother, who, when I was a young adult, had a, had a conversation with her at one point, and she made a comment on something. She grew up as a single child with a very emotionally abusive mother. And she made the she made it a personal decision, as a young woman, a young, newly married, newly become a mother, Woman Who, and this is in the days long before all the commonplace concepts we have floating around these that we can talk about, about self knowledge, and how to deal with past traumas and how to not pass those on. But she made a conscious decision. And this is the word she used me. She said, this abuse of the younger generation by the older was not going to go any further. So she had no idea. She had a con, she had a picture in mind of what she was going to not do. She don't think she had any specific knowledge about what was the right way or wrong way to implement that. But she had that, that thought and that, that deliberate, basic foundation. And I'm the mind my siblings, or we're the beneficiaries of, and that's one of the things and I

Scott Benner 1:21:20
grew up pretty poorly, like, why wasn't parented well, and you know, like, my wife, either my wife to her credit, because we got married pretty young, like, to her credit, she's like, she would, like help me with like, moments where she's like, You can't do it that way. And here's why. And then, you know, like, and I'm like, oh, like, you know,

Speaker 1 1:21:36
that's how I just gotta gotta be, you gotta be sufficiently receptive. Yeah, don't gotta

Scott Benner 1:21:40
be receptive about it, and like, and then it takes time to build, but by the time the kids were a certain age, like, I pretty much figured out, you know, that kindness pattern and why that was important and everything like that, not that I wasn't unkind. It's just that I grew up in a house where I got yelled at a lot. So if something got out of hand, like I thought to yell to stop it, you know what I mean? Like, that's just where I don't do that anymore for a long time. But when it came down to the diabetes thing, like you have no idea like, I used to write a blog before this. I've been at this like, a long time. And so I wrote a really popular blog, I was around people who all were writing but they had type one. And they'd always say to me, Oh, sure, hurry one sees good now. But what's gonna happen when you're not controlling it anymore? Knows, like, I don't like if you never had a kid like I'm, I'm teaching her at the same time. I'm like, I'm not just like doing it. And we're not talking about it. Yeah, that's a parent's job. Really, James is to say something, say it again, find a different way to say it, say the third time, say to 500th time, all without being annoyed by it or making you upset that you've heard it 500 times. All right, right. I just did that with diabetes. And it's been a very slow handoff. And it's going incredibly well, like I should knock on something. Yeah, but she's in college. And keeping her a one C and a low sixes. Like and here before college, it was in the high mid to high fives. So like, you know, I'm not,

Speaker 1 1:23:04
I don't have anything to complain about.

Scott Benner 1:23:08
Yeah, I don't text her and go, Hey, your blood sugar's 150,

Unknown Speaker 1:23:11
you should do something, what she studies. Oh,

Scott Benner 1:23:14
she's learning how to design clothing. She said, she's an art school, getting a design degree. So it was very interesting. As she was leaving high school, she had it narrowed down to pre law and fashion design. And she could have gone off and done either of them. And I was like, I wish I wonder which way he's gonna go, you know. And then finally, she said, I'm going to try this art school thing, even though she had never, like really participated in the arts whatsoever. Well, she's doing well

Speaker 1 1:23:41
me personally. As I say, I don't have kids my own but I have nieces and nephews. And I also have a strong conviction that there's no such thing as an adult, whether you've got kids or not, who doesn't reasonably have a an interest in the welfare of the of the oncoming generation. So I mentioned the thing I'm involved with called Space settlement design competitions. That's one thing I do and the other thing I do is I just later this year, I'll be fully qualified to be what is called a Naval Academy blue and gold officer and those are volunteers who helped shepherd high school students, juniors and seniors through the entire application process which is rapidly complex and incredibly competitive. There's something like one Wani or less people who apply for a given class who are actually admitted no kidding you know, more is the better but but this you know, help them identify the best possible candidates and and then helping encourage and shepherd them through the application process and keep an eye on as a goal. That's, that's something I you know, I want to be able to say, and whatever point I get to in my life, I've left something behind me that was that somebody else can get some values and worthwhile. I feel

Scott Benner 1:24:50
the same way about this. There's not too many days that go by that I don't think like we've put all this information in this one place. Like it's up to me to keep it alive. So other People can find it. And, you know, like, and keep building on it so that it continues to be valuable as, as norms, you know, change and technology changes and everything, I feel a lot of pressure about that some days like that, I should figure out a way to like, make sure somebody has it when it's over, you know what I mean? Like, you stop and think about it, there have been great websites along the years that have great information on them. Nobody knows where they are now, because they fall out of favor or whatever. And then all that great information is just gone. So maybe

Speaker 1 1:25:28
at some point, get all the podcasts, digitally copied onto a secure storage drive at some point and get it launched and landed on the backside of the moon, it's safe. I've

Scott Benner 1:25:38
already set it up with the storage company that after my death, they'll keep posting it. Like I've got that set up. And I am currently looking at and toying with feeding it into AI so that eventually it can just be a website where you ask the website a question, and it answers the question based on all the conversations from the podcast. Wow. So I'm working on that too. And then I gotta retire at some point, James, because I can't I can't talk as much every day. Although I probably could. But I

Unknown Speaker 1:26:04
am actually semi retired right now. So

Scott Benner 1:26:06
how is that?

Speaker 1 1:26:07
It's, it's new. Get used to the idea. And that was not voluntary. I worked for a company for 11 years, and they closed their doors last November. And I'm like, holy, I wouldn't I wouldn't read it, I wouldn't find the work. I

Scott Benner 1:26:23
look for a job. I'm 68.

Speaker 1 1:26:27
And I'm still doing work. I'm so but you know, I'm in a position where I've got all fired for those security benefits. So maybe I bring it up,

Scott Benner 1:26:35
hey, do you code Do you know Python and then stuff like that? I do.

Speaker 1 1:26:39
I am a coder. I'm not a Python coder, although I'm always got in the back of my mind that I've looked at that. And that's something that maybe I want to get a little more familiar with. I

Scott Benner 1:26:47
wasn't sure how much of that blended into your job based on when you started. That's all? Well,

Speaker 1 1:26:52
I've made my living in a number of different ways. But most of it has involved doing computer stuff one way or another. And most of that, in the last 30 years is involved things like AutoCAD, I'm actually an expert on I'm also an expert on using things like Excel. Okay, I specialize in generalization. So I have a lot of knowledge I have a great deal of knowledge about that goes at least a little bit of depth into many areas, a few years where I got a lot of depth. And one or two where I'm, you know, I'm your go to guy. The problem from looking for a job perspective is that that makes me instead of being even something as mundane as a round peg looking, you know, trying to find something other than a square hole. I'm an amoeba shaped peg. In a world where the holes are all grossly different shapes that don't fit any of them. That with any precision,

Scott Benner 1:27:49
I sometimes means that if I wasn't doing this, I don't know if anybody would hire me. And yet I'm incredibly successful at this one thing that gets, you know, very strange. So anyway, it's been great talking to you. I really do appreciate this. If you can hold on for one second. I just need to tell you something after we're done. But thank you very much. It's been a pleasure.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that g VOKEGLUCA g o n.com. Forward slash juicebox. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear. Get ever since. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888721151 for us the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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