Alecia Wesner & Marty Drilling together

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Clinical trials are incredibly important for research, but the people who take part don’t usually get to meet anyone they’ve helped.  Marty & Alecia are a very special exception!
Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Wesner’s eyesight! We’ll share their remarkable story and talk about how much progress has been made in treating diabetes eye issues.

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Episode transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, taking part in a clinical trial is incredibly important, but it’s often thankless you don’t expect to meet the people you might help years later. That’s why it was remarkable when Alecia met Marty,

 

Alecia Wesner  0:40

the people who tested that technology, I’ll never meet them and tell them but you know, you’re some that I can still see or the reason I have the strap is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either left or didn’t or they lost their life

 

Marty Drilling  0:56

while she was moved because I was still alive and she’d been told we all died. I was just moved to St. meet somebody who had benefited and certainly appreciated.

 

Stacey Simms  1:06

Marty Drilling took part in a clinical trial in 1974 that later helped save Alecia Westerners eyesight will share their story and talk about how much progress has been made in treating diabetes eye issues.

In innovations this week, a new partnership in the closed loop space could bring a new pump to the US market.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I am so glad to have you along. If you’re listening as this airs, it is Thanksgiving week here in the US probably a Thanksgiving, like none other for many of us, but I hope you are staying healthy and safe. Of course on the show, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son Benny was diagnosed with type one right before he turned two, and he is almost 16 years old. This episode I think is a really nice one for Thanksgiving. It gave me a lot to be thankful for specifically, the amazing people in the diabetes community who lived through very different times, and went through these clinical trials to make things better for people that they assumed they would never meet. It’s also a really great Thanksgiving story, because it’s just one of these heartwarming, yeah, I got to admit, Alecia made me cry. Oh, my goodness, it was a wonderful story.

So I’m really glad you’re here, we also have some really good information about not just taking care of your eyes, but complications that can happen, what you can do about them and the progress that has been made. So if this is something that you have been worried about, I just saw a Facebook post from a young woman in her 20s with something very similar to what Alecia went through. I think this will give you a lot of hope. And some ways to take action.

Quick reminder, my book, the world’s worst diabetes mom is on sale through the end of this month, I think it makes a great holiday gift, you kinda have to sort of know who you’re buying it for. You know, make sure if you’re getting it for your mom, or your wife, that you let them know that you don’t think they’re the worst that It’s me who’s the worst, I could see how that could go kind of wrong, but just go to Diabetes connections.com. And you will see the book, scroll down a little bit. There’s also a tiny little shop button at the very top, but the promo code is “November.” And that’ll take $4 off through the end of this month. And that is plenty of time to ship it to you for the holidays. And I will sign it if you buy it off my website. I can’t sign it if you buy it off of Amazon but it is there in paperback ebook and audiobook,

okay to Marty and Alecia in just a moment. But first diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it’s the sleekest looking and most modern meter My family has ever used. And it’s not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime instantly share blood glucose reports with your health care team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strip subscription plans pick as many test strips as you need and they’ll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo.

My guests this week were diagnosed a generation apart, but boy are they peas in a pod. I think Alecia even says that. Alecia Wesner was diagnosed in 1979 when she was six Marty Drilling was diagnosed at the age of four in 1953. I asked them to come on the show because back in October, I saw a Facebook post from Alecia talking about her virtual JDRF bike ride and here is what she said.

“Today I ride to honor my friend Marty one of the original clinical trial patients of laser eye treatments for diabetic retinopathy He is one of the reasons I have my vision after many years of laser treatments in my 20s and early 30s. Thank you, Marty.”

I had to find out the story behind this. So I called them up and brought them on. Quick note before we jump in, we are going to talk a little bit in this interview about eyes and eye surgery. I don’t know about you, I’m really squeamish. Even though I’ve had LASIK, I have my own eye issues. If that is you, I promise I will jump back in with a quick heads up, I will warn you and let you skip ahead over that stuff if you prefer. And keep in mind we get to this late in the interview. But you should know upfront treatments have changed significantly from what Marty and even Alecia went through. So this is went through. So if this is something you need, this is an interview that should encourage you. It shouldn’t scare you.

Alecia. Marty, thank you so much for jumping on and sharing your stories today. I appreciate you being here. Thanks so much.

 

Marty Drilling  5:54

You’re more than welcome.

 

Alecia Wesner  5:55

Thank you for having us.

 

Stacey Simms  5:56

I admit, I don’t know much more about either one of you than the Facebook post Alecia put out not too long ago, and I thought I gotta talk to these people. So well, you know, we’ll get to that we’ll talk about clinical trials and how you two met. But first, let me just set the stage a little bit. If you don’t mind. Alecia, can you start by just telling us your diabetes story. You know, when were you diagnosed?

 

Alecia Wesner  6:20

I was diagnosed in 1979. So I had type one for 41 years. I have, like you said been in a lot of clinical trials over the last six to seven years of my life, mostly in the AP space. And I live in New York City. I’m very active with JDRF. I’m a JDRF rider. And I’ve written many, many miles on a bike.

 

Stacey Simms  6:44

And when you say AP You mean the artificial pancreas trials. Yes. And Marty, What’s your story?

 

Marty Drilling  6:49

Well, I was four and a half when I was diagnosed in 1953. So I’ve been living successfully with my diabetes for 67 years. My math is correct. And my first clinical study was the one that Alecia and I bonded over was my 1974. When I was in my final year of law school, I finally went to the Joslin clinic in Boston, and they said you’ve got you’re going to go blind if you don’t do anything. And they had the new laser surgery study going on through the NIH. So I was one of the original guinea pigs in that, and fortunately proved to be very successful. And I still have my vision 40 some odd years later. And when Alecia and I first met, which was just about a year ago, it was at a advocacy day on the hill in Washington DC. And I happen to mention I was a participant in that study. And Alecia immediately reacted, I had that too.

And then Alecia, pick up the story from there because it was pretty amazing.

 

Alecia Wesner  8:03

Yeah, please no Marty is downplaying this. So Marty and I, we spent an entire day together. And we’re like two peas in a pod. And really like wooed each other side through this whole day through Washington running around and talking about diabetes and life. And one of the things that we talked a lot about Marty’s destiny, a lot of questions about the 80 trials that I was participating in, and different pumps. So what I hadn’t asked Marty was more of his diabetes story. So we were at Elizabeth Warren’s office. And Marty ended up telling the story about his life of diabetes, but specifically about being in trials for retinopathy. And I got totally choked up, which I have now. I’m sorry. But in listening to him, I have spent a lot of my adult life advocating for clinical trials and clinical trial participation. And one of the things you know, I get to be on the stage and tell people about this is my experience. And that’s why we need to push these things forward. But one of the things I always show are pictures of my eyes because I was diagnosed with retinopathy in my 20s, which was terrifying.

I work in a visual field and rubbed my eye one day, I noticed that the graph paper I was looking at was waves and not straight. And I’d seen doctors have my eyes checked every year. And they had said they were starting to see something but it didn’t really panic me until I saw it myself. I saw a doctor who said you have two options. And one is we keep doing laser and the other was a very aggressive form of laser that was new. And I went, you know, 24 years old. I went with the aggressive ones, but long story not short, was that one of the things I always talk about for why I participate in clinical trials is that I will never have the opportunity to thank the people who kept my eyesight, the people who tested that technology. I’ll never meet them. Tell them, but you know, your son that I can still see, or the reason I have to struggle is the reason that I do all of these things. And my doctor had told me that most of them, you know, they either lost their vision or they lost their life. And many of them were gone. So I just assumed everybody was, for lack of a better word dead. And so Marty telling the story, I just lost it. And it was, this was my friend for an entire day, we lunch together, like we have this whole day of bonding. And all of a sudden, like all these people, I’ve always wanted to think through the person. Oh, nice, good. So I was a mess. So there is a picture of us that I took, because I am really into like capturing the moment in which I am we are both crying outside Elizabeth Warren, about the fact that like this is, there’s no more important moment to me than this moment. So yeah, so that is how we are friends. So I’m sorry, Marty. Your version of this story,

 

Stacey Simms  10:55

I’m upset with both of you now. Because I think I have cried twice on this podcast in five years.

And you’ve, you’ve just done it again. And it takes a lot. But I think because and I’m not gonna, this is about you guys. But I think when you have a child diagnosed so young, and you have to jump in and take care and do all this stuff. And plus, I’ve worked with information for so long, my whole career has been in news. I hate to put it this way, but you kind of harden your heart. But at the same time, I’m with you, Alecia, I think all the time about the people that have done so much to make my son’s life better. And to meet somebody like that in the circumstances in which you met Marty. Yeah, no. And so Marty, let’s swing over to you. And don’t brush it off. I know you’re gonna try. But what was going through your head, when you looked over at Alecia and realized her reaction,

 

Marty Drilling  11:47

as I said to Alecia, I was really moved, because this is the first time I had ever really met somebody and talk to somebody who had benefited from my laser treatment, I experimentation. And it moves me just realize in specifically that as a result of my efforts, and many others, we should still had benefit. And I knew that in general terms, but I really had never talked to anybody who had benefited from that. So while she was moved, because I’m still I was still alive. And she’d been told we all die. I was just moved to say, to meet somebody who had benefited and certainly appreciated.

 

Stacey Simms  12:34

So if you don’t mind, let me ask some details. And I always say look, if this gets too personal, you know, we’ll move on. But I’m very curious if you don’t mind, Alecia, what happens? So when you’re treated like this? Does it go away after a while and you’re fine. Now? Do you have to continue treatment would you mind kind of sharing what you went through?

 

Right back to Alecia in just a moment. But first diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That’s where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and ready to go with no visible needle. That means it’s easy to use. How easy is it? You pull off the red cap, you push the yellow end onto bare skin and hold it for five seconds. That’s it, find out more, go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma. Visit Gvokeglucagon.com slash risk. Now back to Alecia talking about her issues with her vision and what she was able to do.

 

Alecia Wesner  13:51

Yeah, absolutely. Well, I know that my situation is could be different than somebody else’s. But for me, I was in my 20s this was, you know, certainly a wake up call of my own diabetes care and maybe I could take it up a notch. And I had not been on a pump before that and decided that would give me tighter control but that this was the time to make this decision. Which I look back at which I think a lot of people who are on pump technology say the same thing, which is that they wish they had done it sooner. And I’m certainly in that boat, but I had aggressive laser for years. And I am extremely grateful to the Marty’s of the world specifically Marty and also really, really great doctors. My vision is fine now I’m 47 years old. So I wear glasses because I’m old not because I because of anything diabetes related. I will say so so you’re both of my eyes have been treated a lot. I have not had any laser in well over 15 years, which is great. And I just saw my doctor Recently, and he said, you know, your, your eyes have never looked better. And that’s what he says, Every time I see him, that’s a nice thing to hear, as somebody who, you know, I, my careers in lighting design, the irony of all of this and that it’s lasers treating my eyes. It’s always been interesting to me. So I asked a lot of questions at the doctor’s office, and I, I get a copy of all of my scans, because I’d like to look at them. And I have them hanging in my office, because they kind of center me and they remind me that you know, life is short, and to be grateful for the things you have. So I guess to answer your question, My vision is fine. But if I close one eye or the other and look at graph paper, it’s definitely distorted. But my eyes compensate for that together.

 

Stacey Simms  15:43

Wow. And Marty, I was kind of struck when we started this conversation, you said you did your first clinical trial in 1974, which is five years before Alecia was diagnosed, which is interesting to look at, would you mind taking us through a little bit of what your management was like, at that time? And, you know, just kind of talk a bit a little bit about what it was like, then?

 

Marty Drilling  16:05

Well, way back then, you know, you were told, and now you have to understand well, I have to take a step back. Sure. Back in 74, I was living in Boston, and I only went to the Joslin clinic, which, of course, is one of the pioneers in the study of diabetes in that year, when is my third year of law school. And I had never been to a specialist before. So what we did was what my parents said, cobbled together, because they were frequently told when I was first diagnosed, and they would call and say, Hey, listen, you said he shouldn’t have a snack in the afternoon. But if I don’t give it to him, he’s going to pass out. And my mother often says that one of the once you would call the doctor’s office, they would say Mrs. Drilling, you know more about treating diabetes than we do. So you just do what you think it’s appropriate. And that was not an easy burden for my parents to bear. And I give them all the credit in the world, but we, you know, I stuck to what I can remember is I stuck to the basic, you know, I’d have no whatever I had for breakfast at that time, I would try to maintain a boring diet just so I could try to stay within some bounds of normality. And don’t forget, we didn’t have the meters until probably around that time. And so we were just testing our urine in the cup. And I always thought orange was the predominant color because it always came up white. As I told my mother is, you know, you have to live. So I would go out with the my friends and had a drink of beer too, and on weekends and whatever, but I was a student so I did a lot of studying in law schools that sort of helped me maintain some degree of normality and exercise. I was much more made probably because my blood sugar’s were higher than but I could do a lot more exercise then because my blood sugar’s didn’t plummet, except on rare occasions. And fortunately, my friends could tell when I was, wasn’t doing well and what helped me out, but it’s

 

Stacey Simms  18:23

interesting you were and I know that some of us have a misconception of the like, the diabetes, Dark Ages that people were like, lying in bed or doing you weren’t living life. And there you are. You went to college, you were in law school at this point. I mean, you found a way to make it work, even before blood sugar meters were at home and birthing.

 

Marty Drilling  18:41

It’s not like I had a choice. And I am an eternal optimist. So I figured, hey, this is what I have to deal with it to deal with it, you move forward. And the whole idea is to enjoy your life not to sit there and moan and groan that you have, you know, an illness because everybody has something.

 

Stacey Simms  19:01

So when you found the clinic at the Joslin center, when you signed up for those clinical trials, how long did that last? Was it once and done? Did you continue to do that for years? Can you take us through a little bit of what those trials were like?

Okay, Remember when I said I would jump in? Here I am. If you are squeamish, skip ahead about two and a half, maybe three minutes. If you are really sensitive and don’t want to hear any details of any eye surgery. I’m sorry, but to have to skip ahead about eight minutes when we switch to talking about Alecia’s experience with artificial pancreas trials. But truly, two and a half to three minutes will take you through what I would consider the most sensitive stuff that’s happening in this interview. The rest of it just makes reference to eye surgery and some procedures without anything that I would consider really sensitive. Okay, fair warning back to Marty.

 

Marty Drilling  19:50

Sure. first trial was in my left eye, and I think I told him we should this story but but when I went in there, it’s like a Frankenstein movie because it was a very sparse room. It was just the Doctor coverall and his secretary and they put you either lie down on this metal table. And then he’d approach with the head to anesthetize my eye. And this is very primitive, as you can well imagine. And so he was approached with a needle that I thought was about 10 feet one to, you know, stabilized and anesthetize the eye so it wouldn’t move. And then back then they had a huge light to make sure he could see where it was going. And he told me, we had the same brightness, as the lights, they used to light up the ocean when the astronauts were landing it at night, and then they just started zapping away. And that had to do that for three days in a row. And he said, You have to be very careful, you don’t want to jostle your I, like put books under the top, where my head was under the bed, make sure my head wall was stayed above my heart. So after three days with the left guy, they, I would call back and see them, I think I was going back like every three months or so, it was a long time ago. And I don’t always remember all the details. I had laser surgeries, I don’t know how I lost track of the number of times I got zapped in both eyes. As the years went on, the improvements in the treatment went on. And so by the time the West laser treatment had, I had a I just had to put my eye up to the machine, resting my chin on the little bar there. And they could zap it right from there as opposed to having to any or they just would put drops in the eyes. So in terms of pain, it was much less painful and much less cumbersome.

 

Stacey Simms  21:49

Do you remember about when the last treatment was? I mean, are we talking a year later? 10 years later? I’m just trying to get a sense of that.

 

Marty Drilling  21:55

Yeah, it was well into the 80s. Because Don’t forget I had, they had to make sure it worked in the left guy. And then I needed in my right eye as well. So yeah, I was, I see ABS would have been, I’m sure it was a waste into the 80s could have been in early 90s. And then I but I haven’t had treatment for a while. I’ve had a couple of vitrectomy surgery because my vitreous was wrinkled in one eye. And but similar to what uh, we should just saw the last time I’ve been in with a number of years I’ve been in to see the doctor, they’re very happy that it’s stable. They have some issues with my right eye, which is my good eye. But they said it’s stable, so we can just keep doing what you’re doing. That’s great. So how do you is?

 

Stacey Simms  22:42

I bet so how do you if you don’t mind? Again, this is a little personal. But how is your day to day vision? I mean, we’re all wearing reading glasses, as we just said, you know, that kind of stuff? You know? All right, exactly. No doubt. But how is that for you, Marty?

 

Marty Drilling  22:58

While my vision I can see, which is 90% of the battle. I try not to drive at night, because I have low vision impact. And the it’s very difficult to see street read street signs and the lightbulbs get become stars as opposed to circular. So but other than that, I don’t have any restrictions and reading once in a while I’ll get a floaty but it has not impacted my quality of life to any significant degree. And since I enjoy walking, I don’t mind walking around in to various restaurants or whatever that are nearby. Alecia, let

 

Stacey Simms  23:42

me ask you, people, including me, are a little squeamish. And I’ve had eye surgery and I’ve had eye issues. You know, I don’t have diabetes, but I’ve had other issues. And it is one of the things that I think makes many of us very nervous to the point that I would be concerned that some people with diabetes or any condition would be scared enough not to want to seek treatment. Can you talk a little bit? I mean, look, you’ve already mentioned you’ve got like eyeball pictures in your office. So I’m not sure you’re the best person to ask. Can you perhaps ease some fears about getting treatment for retinopathy?

 

Alecia Wesner  24:16

Well, I do think one thing that I should have made clear earlier, is that treatments have really changed since certainly since Marty had laser treatments and that I have had laser treatments. I mean, you know it from the diabetes perspective. Although lasers still one of the treatments, there are more options than there used to be. And I know for me, I think I’m pretty selective about my doctors. I’ve taken years to build up, like my dream team. I really like my doctor, I admire him, he saved my vision. So I think that helps a little bit to but also I think that you know these appointments, it’s not like you’re there for a month. It’s one appointment, you do it once a year and then if you have a problem, you know Make your decisions on how you want to be treated. But the actual laser part of it, the types of things that I was having done, it’s more the waiting, that is the harder part than the actual treatment, you know, you’re, you have to keep your head still and your eyes being held open. And I guess for somebody who’s like squeamish about their eyes, that might sound kind of freaky. But I would think you’d rather have your eye held open, then you’d be trying to do it yourself. So you know, it’s just a matter of staying to bill. And I don’t know if I will ever be good at meditating.

But I think the focusing on other aspects of life for something like that, I mean, it’s no different than any other part of diabetes care, you know, some of it flat out sucks, but you know, that these are the steps that you take for, for your life to go on. And certainly for me with my eyes, you know, I’m looking at a picture of my office right now with my eye and, and it looks like all little dots all over the inside of my eye, and that is scar tissue from where they cauterize the vessels. And that is not what a normal eye looks like. And that is the inside of my eye. But when I look at that, I didn’t feel anything during that, like it, there’s no physical pain, it’s just the discomfort of things still, and a bright light being in your eye for a little bit of time. So I think in like the scheme of, of like, physical pain of things that you’re treated for, certainly, as somebody who’s broken quite a few bones, like a broken bone is 1000 times worse than having your eyes treated. But I think the stress of the anticipation of having a problem is really the hardest part.

 

Marty Drilling  26:38

If anybody is concerned today about getting treatment for their eyes, the progress that has been made makes it a totally different experience from what we experienced and what I experienced. And they don’t even use laser treatments as their primary choice for treatment of anybody with the retinopathy. So they shouldn’t be squeamish. It sure beats the alternative of not being able to see

 

Stacey Simms  27:05

Alecia, I’ve got to ask you, because you know, you’ve been through these clinical trials, and my son uses control IQ. I’m curious, what led you to that? And when did you jump in? Was it back with type zero years ago?

 

Alecia Wesner  27:17

Yeah. Well, this is this is a crazy story. So I live in New York City. And I was at a JDRF board meeting, and Todd Brobson spoke, and he had been in a lot of the very early closed loop clinical trials at UVA. And at the end of his speaking, I asked to take a picture with him and hug him. And I don’t know that he was totally comfortable with that. But I’m aggressive. But I felt so passionate about what he was doing. And that, how could I do something like that? And then, you know, you worry, because you’ve had diabetes for so long that you won’t qualify, you know, like, Am I almost like too broken to participate in these things. So I got on the list at UVA, along with a very good friend of mine. And over about a year and a half, there were a couple times where they were going to bring us in and you know, we got our physicals and all of those things. And then we both got an email saying, We’ve good news and bad news. The good news is the trial we were going to use you for has made enough progress, that we don’t need you anymore, which you know, if you think you’re going to be in a trial, that’s a real bummer. Especially because you’re trying to coordinate how you’re going to get to UVA and like take time off work and all this other stuff. But the good news was that the next phase of trials now is going to go out to other research institutions. And one of them was Mount Sinai in New York, I got this email as I was sitting for my regular three month checkup with my endocrinologist and Dr. Cara levy. And she was the doctor who was going to be overseeing the trial.

She walked into the room, I said, you’re never going to believe this. And she said, I already know your file as somebody who maybe could be in this trial. So that’s how it all started for me. But I think for me, at a certain point in my life, my life view is that this life is really a gift, and that I am lucky to be here, and that I have lived on borrowed time since I was six years old. So I think I had gotten to a point where you know, I can do fundraising, I can do walks and I can do rides and everything else. But what is the next level for me of how you know, my life, and this body can make an impact and I thought being in a clinical trial so you know, some of the trials have been much more challenging than others. One of them was actually up at Joslin and I wish I had known Marty then because I then walked around Joslin, after everything and there they had done a lot of eye scans, and they have the original equipment for treating eye treatments in the lobby at Joslin and to me that hit me hard because you know your life is like Not a straight line and not a normal path that you plan. But that was a real moment. This friendship that I have with Marty is, you know, we were laughing about the fact that it’s been a year. But Marty and I talk all the time. And it’s such a crybaby mess. And I’ve only had like two cups of coffee, like usually this is like a drink.

 

Stacey Simms  30:28

But we understand why,

 

Alecia Wesner  30:30

you know, I just, I just feel really lucky. And, and I am glad for that. And it is just, it is such a pleasure to know somebody who has, you know, it’s like Marty, I, there were no blood meters when I was a kid, it was testing your urine. And the technology has changed so much. I mean, carb counting didn’t exist. But I I look at that. And it’s, it’s such a special thing to have this bond with somebody else. And that they they really did have an impact on your life.

 

Stacey Simms  31:01

Marty, have you been back to Jocelyn? Have you seen that in the lobby?

 

Marty Drilling  31:05

Oh, yeah, absolutely. stone in the base of my unit. It’s prominently displayed there in the lobby, the corner of the waiting room. I have seen it then that like a we should meet makes a big difference. Joslin does a great job of maintaining the history of the development so that we can all appreciate this how far we’ve come, we’re not, we don’t have a cure. But most diseases, you never get a cure. But certainly with the improvements made with them, the pump and carb counting, we have a lot of instant information to help you make a best decision you can based on what the facts are at the time, knowing full well that what may work five days in a row, which isn’t going to work six days, six, seven or eight. But but that’s just the reality of the situation. And was it wasn’t cool, we should he’s right is I think we have a unique bond just because we have so many shared experiences, and have the same approaches is take advantage of each day and your torture.

 

Stacey Simms  32:10

Before I let you go. I’m curious. Marty, one more question about you know, your story here. They told you it sounds like one of the reasons you did the clinical trial in the first place was because they said, you know, it’s 1974 you’re probably going to go blind if you don’t do this. And I’m curious, you know, looking back at that, what’s that, like to hear those words, I talked to a lot of people who are diagnosed, you know, before, I mean, I’ll just put down 2000 as a casual marker, I’m kind of making that up. But I know people who were diagnosed in the 1990s, who were told they wouldn’t live to be 30 years old. You know, it’s got to be devastating to hear that. And I don’t know how somebody hears that and says, forget you, I’m gonna fight I’m gonna do what I need to do to make it. I’m just curious, you know, when you hear words like that, how do you keep going?

 

Marty Drilling  32:54

From my point of view, I said, I’m going to make the most of each day if that’s what’s going to happen, you certainly don’t have an alternative because there’s only a Joslin said, if you will have a comply with the rules and you know, live a good life in terms of diabetes care, you can survive, and if you don’t, you’re gonna die a quick and very painful death. So that was the impression. But no, you’re talking about those that were diagnosed in the 90s. Back in, in the 50s. My mother, I was four and a half. And my parents were told, he’s not going to make it to its 11th birthday. So I go leash everyday is against, I just figured I’m going to get the most out of life while I have it in this 70s. every October, the New York Times would run a full page article. And now all the deleterious side effects of diabetes long term complications. So I figured if I survive to the age of 40, I’m going to not have any legs or be blind. So that certainly impacted I’m sure on some of the nights when I decided I was going off this strict regimen. But all in all, I just said, I sort of figured if I can defy science, and that’s alright in my own book. And so I just kept wanting to prove people wrong, but it didn’t it impacts how you think about life. Certainly, I didn’t do some things like I never took up skiing for an example. And we should can because I was told by ice wood, all the jolting and going down the ski slope would cause the my eyes to hemorrhage. So there are sacrifices you make, but I just never let it stop me from getting out of bed in the morning and doing something positive.

 

Stacey Simms  34:50

And now Alecia, I’ll ask you to you know, it is remarkable to meet someone like Marty, who as you said for years you wanted to thank the people that had done these clinical trials, what is it like now knowing that you are that person? for other people, there is somebody who is into the 21, who is thanking you, who may never meet you for doing these clinical trials and everything you have done.

 

Alecia Wesner  35:14

Yeah, that part’s a little weird. So because Marty actually asked me this one time, about how I see him, that other people will see me like that. And I really poopoo the whole thing. But there is a sense of responsibilities. Like when you’re in these trials, you’re following a lot of rules. And I think the reason that I kept kind of working my way up the chain of clinical trials, as far as AP step one was because at the beginning, they want to make sure you’re, you know, you’re on a tight schedule, and you’re writing everything down. And you know, it’s a huge time commitment. So I think I’ve taken the responsibility of being in trials very seriously because I, I want these technologies to work. But I think for me, you know, I, and Stacy, you’re a mom to somebody with Type One Diabetes, I think that a lot of credit goes to my parents, my parents, when I was diagnosed, the doctor said, She’s a child first and a diabetic second. And that really, they took that to heart. And I played sports, I didn’t want to play like sports, I hated. My parents made me play, because I was going to show the world that I could do this, but also because I was supposed to be getting exercise.

And like I went to sleep overs as kids. I did not like in my class, because my mom thought if this person will you know, when I was diagnosed, the concern in the neighborhood was that I was contagious. Right? Right. It must have been Oh, yeah. And, you know, all of a sudden, like, I went from having friends too. And, you know, this is long before the internet and sold. But, you know, somebody invited me to sleep over and I thought this girl was a bully. And my mom said, You’re going there. And I was like, Please don’t make me go, please. Go and, and, you know, and I ended up going to sleep over because her mom really wanted to put it out there. But it was okay to have me sleep over. And I looked back at, you know, my parents pushed me so much. And I guess there’s like a negative to that too. But I think in the end, like, you know, I went to college, and I knew somebody else with type one who went to a local school because their parents didn’t want her. They thought it was too much of a risk to move away. And Stacey, as you pointed out, we both went to Syracuse. And Syracuse was, you know, a whole different world than what I had come from. But I think those things, and I do think that’s part of the bond that I have with Marty beyond like I was to have these clinical trials, we don’t have diabetes and stuff like that. It’s that I think we both have a very similar approach to life, which is go out there and do it. You know, and that doesn’t just relate to diabetes. That’s life.

 

Stacey Simms  37:45

I love it. Well, it has just been remarkable to listen to both of you. I hope I’ve done your stories justice here. I’m still kind of teary and I’m not happy about that.

 

 

Alecia Wesner  37:59

Marty just had his wedding anniversary this summer. And I spent the day with him.

 

Stacey Simms  38:05

Oh, Marty, how long have you been married? Tell us about tell us what your wife.

 

Marty Drilling  38:08

My wife is a saint. We’ve been married 47 years, have two kids and five beautiful grandchildren. And I tell people all the time that without her I don’t think I’d still be here because she has accepted the burden of living with a type one diabetic and does what she knows has to be done. Even if I’m having my low when I get nasty. She put tolerate it and then I pay for it later. But I get out of that immediate situation. And so yes, Maureen has been a godsend to that. She after we got married, she actually went to nursing school, too, because that would give her more flexibility in working with the kids. But it also has been a huge benefit for my day to day existence in our day to day life together.

 

Unknown Speaker  38:58

Marty.

 

Stacey Simms  38:58

Alecia, thank you so much for joining me for sharing your stories. And I really hope you come back. Let’s check in again, maybe you know next year and see what everybody’s doing. But thank you so much for joining me.

 

Marty Drilling  39:09

Well, thanks for the invite and great, great talking to you and Alecia.

 

Unknown Speaker  39:15

Thank you.

 

Unknown Speaker  39:21

You’re listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  39:27

Lots more information on what you need to know about taking care of your eyes. We will link up more information about some of these clinical trials. I just found this story to be fascinating. You can go to Diabetes connections.com click on the episode homepage as always for the links in the info and the transcript. I so enjoyed this interview. I think you could probably tell as I said, I don’t get too emotional about this stuff anymore. But every once in a while it sneaks up on you and boy, I mean you can’t even hear it really during the interview. I cried so much more. It’s a complete mess and it was one of the things Few days, I forgot what I was doing that day. But I’d actually put on makeup. I had something else where I had to be on camera, and I was a complete mess. If I haven’t cried off my mascara in a very long time, thanks to all this working from home. Hopefully we’ll follow up with Marty and Alecia, I really think they’d be fun to check back in with.

Okay, up next we’re going to talk innovations, a new team is announced for the United States pump market. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it’s their diabetes management software. And for a long time, I just thought it was something our endo used, you know, you can use it on both a desktop or as an app on your phone. It’s an easy way to keep track of the big picture. I check it now about once a week. I probably check it a little bit less than that these days. But it really helps Benny and me dial back and see longer term trends and help us you know, not overcorrect to what just happened for one day or even one hour. The overlay reports help the context of these glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us find out more go to Diabetes connections.com and click on the Dexcom logo.

As I am taping this episode, it has just been announced. And I mean like an hour ago that Eli Lilly and Yep, so med have entered into an agreement to quote advance an automated insulin delivery system, they are getting into the hybrid closed loop market. There is going to be a lot more information forthcoming. I have already contacted these folks to see if they’ll come on. I definitely want to talk to Lily I really want to talk to Yep, so mid I hope I’m saying that right. This is a European pump company that has been out bro, I’d say since the mid 2000s, probably since 2016. I know a couple people who use it who are very happy with it. It hasn’t come to the United States yet, but really plans to bring it here, they will probably submit in 2022. If all goes well, so who knows if it’ll be early or later when that will actually come out. But here’s what’s interesting to me. And again, we’re getting a lot more details in podcasting is not the best way to get breaking news. So I will be putting more out on social media.

But here’s my very quick take about two two and a half years ago in May of 2018. A bunch of bloggers and I guess influencers were invited to Lilly’s headquarters in Cambridge in Massachusetts, as Lily had this connected diabetes solutions system that they started talking about, and apparently or supposedly wanted blogger input. So we all went and we were shown an early prototype of what was supposed to become Lilly’s pump. And I assume now that they are not going to use what we saw, which was a little disc it was a little bit smaller than I think at the time, people compared it to like a little round box of shoe polish or tobacco chew, you know, that kind of stuff. It was about the size of a small coaster, it was less than an inch high, it was very sleek and tiny. It was connected to the body by a little tube. So you could make the tube longer or you make the tube shorter. The idea was that you were close to the body, kind of like what we’ve seen of the upcoming and expected tandem tee sport where it has a tube but it is supposed to be placed very close or on the body like an omni pod. And you could hear us talk about Lily’s connected diabetes solution as they call it in a past episode, I will link that up. It also features pens, and it is at least at the time we were shown it would be using the dexcom CGM. I don’t see an announcement of that. I don’t see a CGM announced with this. But of course, they’ll have to be one, the assumption would be that it is Dexcom since Lilly has an agreement with them.

But what’s troubling and I guess that’s a strong word to use, but I’ll use it. what’s troubling about this is that this pump will use prefilled insulin cartridges for Lilly’s rapid acting insulins. So it is a proprietary insulin system. I don’t think there’s any other pump on the market that only uses one kind or one brand of insulin. And my guess is they will make sure that by making the cartridges, a special shape or some kind of patent so that if you want to use a novo insulin in it, you can’t. I don’t know for sure. We haven’t seen that the DIY community is fabulous at this and if it can be done, I know they will get it done. But I find that troubling when we voiced that in 2018, we asked about using only Lilly’s insulin in their pump and how troubling that would be. And at the time reading between the lines, my takeaway was Lilly feels the insulin makers all feel that the Ryan’s gonna be over soon, states are getting into the action, they’re cracking down on price. There are going to be reforms whether they’re on the federal level or not, and they’re not gonna be able to charge what they have been for insolent and they need to find a way to continue to make the outrageous sums of money that they are making. I know it’s not very nice of me to say but you And how I feel about this. So I think proprietary pumps are one way that they may try to do that. I of course will give Lilly a chance to respond, as I said have already reached out to them and to give some meds so hopefully they will come on the show and tell us more competition in the pump market is a great thing, but not if that’s at the expense of competition, little as it is in the insulin market.

We’re in the homestretch of 2020 and like a lot of you this year cannot end soon enough for me However, there’s still some good stuff to come we will look at the bright side as much as we can and friends for life is coming up. They are doing a wonderful virtual winter conference. I will link some information in the show notes as well. We are doing our game show Wait, wait, don’t poke me which is one of my favorites. And we had a great time doing this. I love writing all the nonsense that goes into the show. If you haven’t listened to it or seen it in the past is a take off of NPRs Wait, wait, don’t tell me. If you haven’t heard that show. I highly recommend you listen to it. It’s just a fun trivia news and nonsense. There’s limericks. It’s really a fun game show. Doing these game shows without an audience is very difficult. My panelists were ready in game and up for anything and they did a great job. I might have to put a left track in as I edit it, we shall see. But I hope if you’re going to friends for life, virtually that you stop by watch the game show and take part we have some fun interaction. Last time we did this over the summer I created a bingo game where you could play along from home. I think we’ll do that again.

And then we are just looking forward to 2021 I have lots of fun stuff in store for the podcast as usual. I always want to hear from you. Let me know what you think what you like to hear what you don’t like to hear. I take it all to heart and do the best that we can. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I’m Stacey Simms. I’ll see you back here next week. Until then, be kind to yourself.

 

Benny  46:55

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