"You Can Either Help Us or Understand We'll Do It Anyway." One Couple's Story in the DIY Diabetes Movement
Release Date: 06/09/2020
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Diabetes Connections with Stacey Simms Type 1 Diabetes
Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes...info_outline
Melissa and Kevin Lee played an important role in what we know now as NightScout and the DIY movement. Their interest was initially sparked because they wanted to have children. Melissa lives with type 1 and Kevin has an engineering background. They jumped in with many other "hackers" to create what we know now as Nightscout and other DIY systems. By the way, the Lee's children are now ten and eight!
In Tell Me Something Good, wedding bells for a T1D couple – which spark some fun stories from others in the community.. and an update on a change my son made after our last episode.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:25
This week, Melissa and Kevin Lee played an important role in what we now know is Nightscout and the DIY movement. It's kind of hard to remember but those early days very different. Melissa remembers what it was like the first time Kevin for husband followed her numbers and acknowledged what a hard day she'd had.
Melissa Lee 0:45
And I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it. They say it was the first time that anybody outside of me or another person with diabetes looked at I said I see you. This is hard.
Stacey Simms 1:02
Melissa and Kevin were interested initially in the DIY movement because they wanted to have children. Their kids are now 10 and eight. We have a lot to talk about.
And tell me something good wedding bells for a couple who live with type one. And that sparked some fun stories from others in the community. plus an update on a change my son made after our last episode.
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 Diabetes Connections. I'm so glad to have you here. I'm your host Stacey Simms we educate and inspire about type 1 diabetes by sharing stories of connection. And this is a story of connection. Melissa and Kevin have so many wonderful anecdotes to share about finding the DIY community about those early exciting days about the projects they worked on. And we talked about what it's like as a married couple to go from not sharing any information. about diabetes to being some of the first people to be able to see CGM information, you know, how does that change your relationship? How do you talk about it? And we'll get to that in just a couple of minutes. It was great to talk to them.
I wanted to bring you up to speed first, though, on something that I mentioned. Well, Benny mentioned it when I spoke to him last week. So Benny is my son, if you're new, he was diagnosed right before he turned two. He is now 15 and a half. And we talked last week about changing a bit of our routine, he has been taking a long acting insulin called Tresiba for almost two years along with using an insulin pump. It's a method called untethered, I'm not going to rehash the whole thing. I've talked about it many times. But if you are new, that will link up more information in the show notes and you can go back to listen to last week or previous episodes with Benny about why we did that. bottom line he was using so much insulin because of puberty and maybe some other issues genetics who knows that it was very, very helpful to add an additional basal source that took the pressure off the pump inset, but Over the last month, his insulin use has gone way down. And that is because of three factors. He's probably coming out of puberty, he has lost a lot of weight. And we are using the control IQ system, which we noticed right away meant we were doing far fewer big corrections and we just used it so much less insulin on it.
So during the show that the last endocrinology appointment, Dr. V, had said it was fine to go off the Tresiba, no problem, do it when you want if you want, and Benny said that he did want to do that. So as I'm taping this, it's probably about eight days since we made this switch. It takes about two to three days everybody's a little different to get Tresiba out of your system. It works a little differently than some other long acting so it takes longer to get out of your system. We did have a rocky three days but we were used to that we knew that was coming and just as I had hoped control IQ the software system with the tandem pump and the Dexcom just has worked even better than it did before and I don't talk about specific numbers with my son. That's not how we Roll, but just to give you some perspective has been about 70% in range, you know, it goes up, it goes down very happy with that number. He has been 80% in range, I think 82% in range for the last seven days as an average and two days where he was like 98% in range. It's crazy. So I don't think that'll continue because that's how diabetes works. Right? Don't you find sometimes it like lulls you, when you make a switch, it always starts out great, and like a week or two later floor like the rug just pulled out from under you. So we'll see.
I want to get to Melissa and Kevin. But at the end of the show, I'm going to talk a little bit more about some changes we've made recently, in addition to Tresiba, we have changed how we use sleep mode. So stay tuned at the very end. I'm going to talk about that. But I know not everybody uses control IQ. So standby
Diabetes Connections is brought to you by Real Good Foods. It's really easy to compare and see what we love about Real Good Foods. If you put them side by side to other products, I mean their breakfast sandwiches, six grams of carbs, 18 grams of protein compared to like, you know 2636 grams of carbs in other products and a lot less protein and a lot more junk. If you look at their cauliflower crust pizza, you It's amazing. Not every cauliflower crust pizza is actually low in carbs, you know this you got to read the labels. So Real Good Foods, nine grams of carbs in there cauliflower crust pizza. Some of the other ones have 3540 grams of carbs. I know everybody eats low carb, but you know, you want to know what you're getting. You want to really be able to see, well if I'm eating a cauliflower crust pizza, you might as well eat you know, a bread crust if you want 40 carbs per serving. Real Good Foods is just that they are made with real ingredients, you know stuff you can pronounce. It's so easy to find. They have that locator on their website, it's in our grocery store. It's in our Walmart, and you can order everything online, find out more, go to Diabetes, Connections comm and click on the Real Good Foods logo.
My guests this week are part of the history of the diabetes DIY movement. longtime listeners know that I am fascinated by the we are not Waiting crowd. And I can't say enough about what they have done for our community. In fact, I'm actually trying to put together an oral history. And we've talked to a lot of people since 2015. When I started the show about this movement. The big problem is a lot of these wonderful engineering and tech types are a little spotlight adverse. You know who you are, but I'll get there. I did reach out to Kevin and Melissa, because, you know, I've talked to Melissa a few times about pregnancy and type one and other issues. I think that the show we did as a panel with other guests about pregnancy in type one and Steel Magnolias is frankly, one of the top 10 episodes, not because of me, but the guests are so amazing. And that night gets so much praise on that episode, people, you know, women pass it around. I'll link that up in the show notes.
But you know, I hadn't heard Melissa and Kevin's story, and their names always come up when we hear about the early days of the DIY builders. So our talk today is about much more than the technology it's also about marriage and kids and diabetes and sharing data. You know how that affects your life. Quick note, Kevin now works for Big Foot biomedical and Melissa works for tide pool. If those names don't mean anything to you, if you don't know what those are, or you know what they do, might be a little bit of a confusing interview. There's some presumed knowledge here, I will put some links in the show notes, you may want to go back and listen to previous episodes about the we're not waiting movement or just check out the links. Also, it is really hard to get people to acknowledge the difference they've made. These are all very modest people. God loves them, but I do try. So here's my interview with Kevin and Melissa Lee,
Melissa and Kevin, I am so excited to talk to you two together. Thanks for making time to do this. I know how busy you both are.
Melissa Lee 7:43
Thank you for having us on. This is a fun thing to get to do.
Stacey Simms 7:47
I don't know if Kevin's gonna think it's that fun. We'll see. And I say that because in the small way that I know you you don't seem like you're quite as conversational and chatty is as we Melissa, well, we'll see how it goes. Kevin, thanks for joining us and putting up with me already.
Melissa Lee 8:04
Well, you know, he actually is until you stick a microphone in front of his face. Oh, okay. You know, beyond that, yeah.
Stacey Simms 8:12
Well, let's start when when you guys started, and Melissa, I will ask you first How did you meet?
Melissa Lee 8:17
Oh, this is a story I love to tell. And Kevin's gonna already be like, why did I agree to do this? So this was like 2006 and I spent a couple of years doing internet dating. And you know, I'm very extroverted and and like a go getter. And I had just been on, like, 40 bad days, basically, on the internet. Basically, I was broke from spending money on lots of different dating sites, and I found a free one. But during that one, it turns out that this guy was on it because one, it was free. And two, he liked their matching algorithm that tells you a little bit about why you needed so we met online and then What a year and a half later, we were married. Wow. So yeah, we were married in late 2007. At the time, I was a music teacher. And Kevin, how would you describe what you did in the world?
I was working at Burlington, Northern Santa Fe, just deploying web applications as a contractor to IBM. And then in our early years, you worked for capital, one bank doing infrastructure architecture, and then later for American Airlines doing their instructor architecture. So we like to say, you know, we've been in finance he's been in travel is been in transport. He's been in lots of different fields doing that same thing that I just said infrastructure architecture, which I will not explain.
Stacey Simms 9:44
So, Kevin, when did you go from checking out the algorithm of the dating app, to noticing that perhaps the diabetes technology that your girlfriend and fiancé and wife was using, when did you notice that it really could be done better. And then you could do it
Kevin Lee 10:02
became a little bit later. And it first I kind of just let her her do her own thing. She managed it. She managed it well. And then as we started to progress, and we both wanted kids,
Melissa Lee 10:16
yes, we got back from the honeymoon and I had babies on the brain and two of my bridesmaids were pregnant. And then I have this whole, you know, in our pregnancy podcasts that we did together, I had babies on the brain, but I had this diabetes hanging over me. And I think that that was a huge motivator for both of us. So like mid 2008, my insulin pump was out of warranty.
And so that's that's whenever I really started to encourage her and I started getting involved and saying, hey, let's let's go experiment. Let's find what's what's right. Let's look at what else what other options exist and didn't find too many other options but no, we I did switch I switched insulin pump brands and we started talking about this new thing that was going to be coming to market called the CGM.
So I got my first CGM within the next year. And Kevin immediately started trying to figure out how it works. So this was the freestyle navigator. And this was like 2009. I think I was maybe already pregnant or about to be pregnant. And Kevin was trying to hack this device.
Stacey Simms 11:25
So what does that mean? When you said you started to figure it out? What did you do?
Kevin Lee 11:29
Well, it bugged me that the acceptable solution was the we had this little device that had a range of measured in the 10s of feet. That was it. And I had a commute. At the time, I was working at American Airlines and my commute was 45 miles one day daily, and she was pregnant, and I just wanted some sort of assurance that she was safe and there was no way to get that and I just wanted to be able to You know, it was obvious that this center was sending the data that I wanted on the available through an internet connection. How do I get that? Ultimately, that effort was unsuccessful. And that's when we started going to friends for life. And there, that's where we saw I guess Ed Damiano’s connected solution where there's remote monitoring, and we saw the Dexcom. And that's whenever I thought, hey, if that's an option, and so we started looking into the Dexcom and switched over.
Stacey Simms 12:39
I'm gonna jump in because I'm a little confused. When you said you said Damiano’s connected set up, I thought that he was showing off what is now called the iLet and the new the bio hormonal insulin pump. What was the Dexcom component to that that you hadn't seen before?
Kevin Lee 12:54
So it was just a simple remote monitoring, you know, he needed to be able to as part His research to be able to remotely monitor the patients that were well,
Melissa Lee 13:05
specifically, he had an early version of the bionic pancreas had a Dexcom that was cabled to a phone. Oh, and so if you look back at like, 2012 And so like he I remember Kevin holding the setup in his hand and looking at it and being like, you know, this is fascinating. Like, I have an idea.
Stacey Simms 13:30
Because at the time and I'll find a picture of it, but it was cable to a phone. And there were at least two insects from the pump. So you had to have the the CGM inset and then you had to have two pumping sets and then the phone cable for the bionic pancreas at that time. Am I thinking of the right picture?
Kevin Lee 13:45
No, I really should
see all of that.
Melissa Lee 13:49
You know, like we're so old at this point.
Like, like eight years ago now I wasn't realizing because how have my children are but this You know, I want to say that this was even before we'd have to go back and back with them.
Kevin Lee 14:05
Yeah. And that was just the moment that hey, okay, this is another alternative. And we were, we were actually looking to switch at the time because I think that's when the note and I switched.
Melissa Lee 14:17
Okay, we had to switch because navigator went off the market in 2011. So this is right around the time, we just switch to that.
Unknown Speaker 14:24
So what did you do with the Dexcom ,
Kevin Lee 14:26
whenever we noticed that there was a little port that was also used for, for charging and for data, I connected to it and started reverse engineering it sending data and seeing what we got back and trying to get that data off. It was first connected to my little Mac MacBook Pro. And I just had a goal over Thanksgiving to be able to get that data out of the CGM. And it took three or four days and I was able to get basic data out of the system. In premiere, it was just as simple as uploading it, and then visualizing it.
Stacey Simms 15:06
So for perspective, and I want to be careful here because I know there were a lot of people working on a lot of different things. I'll be honest with you. I'm not looking for who was first or when did that happen? Exactly. But just for perspective, is this basically the same thing that we then saw, like john Costik, put up on Twitter when he said he got it like on the laptop? Or, like, what would we have seen if we had been sitting in your house that day?
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Now back to Kevin answering my question about what does it look like when he figured out how to reverse engineering the free the Dexcom data.
Kevin Lee 16:30
Absolutely that we would you would have seen a little text flying by saying this is the the glucose number. Yeah, on the on the computer. It wouldn't have been very exciting to most. And from there, Melissa tweeted out saying hey, we have the data available from our Mac and I guess that's where Joyce Lee picked up on it and wanted some more information.
Stacey Simms 16:55
All right. So Melissa, take it from there.
Melissa Lee 16:56
Yeah, you know, Joyce has been a real champion as those early days. Why date and so I remember her reaching out to me and saying this is this is really interesting. I want to know more. And in this was the same year that Dana and Scott were bringing their thing to life with what was then DIY APS. This is around the same time, same era in history that, that john Costik was doing his great stuff and with Lane Desborough and the early days of Nightscout, so all of these things were happening in these little pockets, and we were just another little pocket at the time. One of the things that concerned us was whether we were doing something that was going to be shut down really quickly, like there's something that you find knowingly or unknowingly, it's kind of like when you agree to the terms on iTunes.
So when you use these devices, there's something called an EULA and End User License Agreement. And these eu la say, you're not going to reverse engineer this product. And so we were a little cautious about what we wanted to diseminate in terms of like your take this and run with it, but that culture was still developing. And so at the end of that year was the big d-data event at the diabetes mine summit, where there were a few really key DIY influencers sort of in the room. This is where Lane first coined the we are not waiting and, and the next day I was at that summit, and I was hearing Howard Look speak about what had happened at the d-data summit the day before. And I was like, Oh, my God, Kevin has to plug into this. So we want to help this initiative. Like we want to be a part of this. We have so much to offer we this whole remote monitoring setup that he had built for me. And at the time, like by then I think one of the biggest things we have done is Kevin has developed do you want to talk about glass.
Kevin Lee 18:51
Yeah, it was just a another way to visualize the data. So Google Glass, I don't know if you remember that. It was a kind of a connection eyeglass. Yeah, in some ways, it was ahead of its time in other ways. It was just a really interesting idea. I got a pair, and I was able to have it alert me when she crossed the simple threshold. And I was able to see historically three hours or 12 hours or whatever it was without having to pull up a web page. It was just kind of always there and on available for me if and when I needed it. So it was just kind of an ambient thing in the background that I didn't feel like a I had to worry about.
Stacey Simms 19:38
Interesting. Kevin, I'm curious in those early days, so if I could just jump in. You know, you you don't have type one. You care very much about someone with type one and you're doing this because you care about her and want to make sure she's safe. When you started meeting other people who were doing the same thing. What was that like for you? I know it's chancy to ask an engineer about how they feel but it had to have been nice to get kinship with these other people who basically spoke your language and also understood the importance behind what was going on.
Kevin Lee 20:07
Yeah, so that was actually really kind of interesting whenever we first started sharing that we wanted to share it just with a small group of people. And I think it was Manny Hernandez that introduced me directly to Wayne and Howard and a few other Brian Maslisch.
Melissa Lee 20:28
yeah, so I like to tell the story that I chased Howard Look down in the hallway after that, and was like, you have to connect with my husband. And then that didn't seem to work. So that's when Manny was like Manny Hernandez, who was the founder of Diabetes Hands Foundation. He is a good friend of ours and he was like, No, I have to connect you to these guys.
Kevin Lee 21:15
And so there's this pivotal email thread from January of 2014, where we started exchanging The well, here's the project that I've done and Lane says, Well, here's a project that that we've been working on and we call it Nightscout. And so we, we kind of exchange notes. And then it was a little bit later that Lane, well, maybe not lane. Exactly. But that's when the the whole CGM in the cloud and the Nightscout. Early foundations started to show up on on Facebook.
I think that's whenever another engineer had published the code on GitHub, and started to set appears. Here's how you set it up. Well, there weren't many in my situation, you know, one of the engineers was a parent. And I think we actually made a really great mix. And I think that that's part of what made the successful so one of the engineers working on the project was A father of a type one I represented the spouse and some of the other engineers were personally affected by by type one, and definitely added a different level increase the camaraderie between us. Those are early days we were were on the phone almost nightly. As soon as I get off my my day job, I'd go home and work on the evening job of trying to get the next set of features out or to fix some new fixes. I love to describe this day because throughout 2014 he would walk in the door and he was already on the phone with the other devs from night out. And if I walked in the room where he was working on the computer, I would be like, Hey, Kevin, and then I'd be like, hey, Ross Hey Jason, because I assumed that they were on the phone. Hey, Ben.
Melissa Lee 22:56
Like it was staying up all night long. They didn't sleep. They did this all day long. Kevin talk a little bit about the pieces you brought in tonight that from our system that we created, and then we like I, I have two producing diabetes data. I'm not gonna, I'm not gonna claim a lot of that. But I was just plugged into it. If people are familiar today with Nightscout, which many listeners may be like, what piece did they hold in their hands? That was yours.
Kevin Lee 23:26
So the the piece that I was so connected with was the what we refer to as the uploader. It was just a piece of extracted the data from the CGM and then uploaded it to the Nightscout website. The early days. I don't know if you remember it was the little 3d printed case with a phone that you got that happened to have a data plan and a wire connected to the the CGM. Right whenever Nightscout first came out, I was I was hesitant to start I mean, this was like the first few months I was hesitant to contribute. I wanted to see What I could do, but as it started to pick up be there, it was obvious that the pace of development that I was doing on my own was not going to equal what the rest of the community could be doing. But then he and I had these other features, which I'll go into in a moment here that I felt the community could benefit from.
So we started having early conversations with Ben and others. How do we fold in functionality that I had into the current uploader, that functionality was essentially the early ability to follow on a native phone app, it was decreasing the size of the packet and uploading more so using less data. It was an Android watch, being able to get the latest data on an Android watch. It was used in camping mode. I don't know if you're familiar with that. But the early days of knights count we had the pebbles that We're kind of Bluetooth connected smartwatch, that use the little EEG displays. Those required you to be connected to the internet. And one of the devs Jason Calabrese had said, I'm going camping next week. And I'm not going to have internet connectivity. And I sure wish that that I could. So I thought about it for a minute. And were able to quickly reconfigure it the existing code to be able to get that data on the watch without an internet connection. So
Stacey Simms 25:32
camping mode literally came from a camping trip. Yes.
Kevin Lee 25:37
Jason Calibrese’s says camping trip.
Melissa Lee 25:40
So well, and then the code that became xdrip which like thousands of people use today.
Kevin Lee 25:46
So that's, that's a great thing about open source community, whatever ideas reverberating off of each other and become more pronounced and it essentially becomes the sum is greater than the whole.
Unknown Speaker 25:59
Let me ask about xdrip, though, was it originally called Dexdrip? was that one of the first times Dexcom got involved and said No thank you, or did I miss remember that,
Melissa Lee 26:10
that was all part of Emma Black’s history. Emma took the code that Kevin and created and, and created built on top of that to create Dexdrip. And Dexcom did say you can't use our name and became accept yeah that you're remembering correctly. It was a very friendly discussion. And so it was renamed to xdrip.
But you bring up an important point about how industry was reacting to all of us in late 2014. The team at Medtronic actually invited many of the community members who were working on that into sort of the belly of the beast, and to come in and talk to them about the why and the challenges and the what could industry do and and What are we not hearing and just sort of like a meeting of the minds. But what was so cool about this is this is the first time that many of us had met one another in person. So here, people have been working on this for a year or two. And now suddenly, it's a table with Dana Lewis and Scott Lybrand with john Costik with Ben west with me with Kevin, with Jason Calabrese, like we're sitting around a table for the first time and talking with industry as this United Community. So it felt a little less, to me, at least as someone who's been really involved in fostering community, right? It felt to me like there's the start of something here. And that was a really exciting meeting. We like to joke that nothing came of it. I was gonna ask about that. But to me like that was exciting. It was this energy of like, we all came to the table and said like, these are the needs of the community. This is why we need remote monitoring. And this is what we're gonna do next. And you can either help us or understand we'll do it anyway. And so that was that we are not waiting spirit.
Stacey Simms 28:08
Well, and that was a very pivotal time. And, Melissa, let me just continue with that thought if I could, it was such a pivotal time, because you all could have said, we are not going to continue without you. Right? We need this. But it seemed to me and again, it's hard to for me, you know, it's funny that it's so long ago now. But it's only four. It's like, it's only five or six years ago, really? The seeds of that community. And you can see it just in the Facebook group with CGM in the cloud and everything else. There's 10s of thousands of people now who are part of this community. You know, did you saw the seeds if it Then did you ever imagine it was gonna get as big as it is now?
Unknown Speaker 28:48
Is it crazy to say yeah?
Kevin Lee 28:54
to directly answer the question. Yes. And that's where we were actually Faced with a another really tough decision of how do we continue to solve these problems? And we started to see the scalability problem that what we viewed as a scalability problem within the community. How do we continue to support it? And how do we deliver this safely to masses? It was a choice that we had to make of if we're doing the industry and we, we try to do it this way. I don't know there, there isn't really one right or wrong way to do it, but it was just a another way. And we believe that by joining the industry that we could deliver something simple, easy, and we could make it scalable and supportable for the masses.
Melissa Lee 29:44
I think those things like those meetings with Medtronic or, or Dexcom, early on. I mean, I remember sitting in Kevin Sayers office at Dexcom and I was there for a completely other reason. I was there on behalf of Diabetes Hands Foundation said and I just like went off about night prayer. But those conversations gave us a really like I want to recognize my privilege in that to be able to be in a position to go sit with leadership at these big diabetes device companies. But let us see that there was a way to bring the change we were doing outside. I don't want to use the word infiltrate because that sounds
to infuse what industry was trying to do with community perspective and patient perspective and and the change that we knew was possible. And that resulted in both of us for huge career changes.
Stacey Simms 30:43
And we will get to that for sure. Because it's fascinating when you mentioned and you know, we're doing a lot of name dropping here. And if you're if you're new to this and you've listened this far, I promise. I will be putting a lot of notes on the episode homepage and you can go back and listen to other episodes, but there's a lot of names that have Gone By. And a lot of names that you mentioned are people who either founded or were instrumental in the founding of newer independent companies that came out of at least as I see it, this DIY wave that happened in the mid 2010, that you all are talking about. And now you both, you know, you work with these companies and for these companies, but I want to continue this the scalability, as you mentioned, because it's remarkable that even as all those companies, I mean, Big Foot tide pool, you know, even as these companies came out of this, you're still servicing all these, and I'll call us lay people. I mean, I, you know, most of the people who were early adopters of Nightscout or things like that seem to have some kind of engineering background or something that helps software makes sense. But then the floodgates opened, and it was just easy for people or easier than it seemed for people to do that. Kevin, was there a point that you kind of remember looking at this and thinking, you don't have to be an engineer.
Kevin Lee 31:59
That's actually part of the reason why I continue to contribute with Nightscout and in the early days, we decided we were going to go ahead and launch on the Play Store. So we set up an account. And you know, instead of having to go out download the source code, compile it, we distributed it is via the channel that users were used to receiving their their app from. Another thing that we introduced was the barcode scanning. So what we found out was set up of the app was a little more complex than it needed to be. And so we introduced the the concept of barcode scanning to set that up,
Melissa Lee 32:42
which now exists in the commercial like every time you start a new transmitter on a Dexcom system today, you scan a barcode on the side of the box. Kevin did that. I remember, I'm not claiming but next time did not develop that on their own. I am just claiming Hey, we.. yes.
Unknown Speaker 32:59
Stacey Simms 33:02
Yeah, that's wild. I did. Yeah, I was thinking about that. Because now that's, of course, that's how we do it. And Melissa, I know I'm kind of jumping around here, but I have so many questions. I wanted to ask you earlier. What was it like for you? At this time? You said, Well, I just provided the data. I mean, what was it like for you during this time other than, you know, just popping in and saying, Hey, honey, how were the phone calls going? It had just been exciting and a little nerve racking for you. What was it like,
Melissa Lee 33:30
by my count, and again, Not that it matters? I think I was the first spouse to be followed.
Sounds creepy, doesn't it? I was the first CGM stocks 4000. Now, um, but one of the things, it did a few things for me, and I'll never forget one day I was in the kitchen and I've got babies and toddler and lay like it had just been a day right when you're a young mom, and you've got Little ones and it has just been a day and Kevin walks in and he said, and you've had a really hard day and I just looked at him like, Are you an idiot? Yes.
And I was like, What are you talking about? And he was like your numbers. Oh, and I just looked at him and I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it Stacey I like it was the first time that anybody outside of me or another person with diabetes looked at me and said, I see you this is hard. And I didn't even know like I probably said yes, you idiot I've had a hard day
Unknown Speaker 34:46
I doubt it.
Kevin Lee 34:48
I had worked on some some code to make Nightscout available via personal assistance. Think the Alexa and Google Home and, and other things. And while I was experimenting and testing it, it became very clear that I was not allowed to ask what what those values were.
Melissa Lee 35:14
He was like, it’ll will be so handy. And if you're in the middle of cooking and you've got like, you know, stuff on your hands, you can just ask it. But like, what you don't do is you know, your wife snaps at you. And you say, Alexa, what's her blood sugar right now? Like, that is not what you do. So now the story I was going to tell Oh, Stacey, you're gonna love this one. So this is like early 2015. And I am the Interim Executive of a nonprofit and I'm representing patients at this endocrinologist a meeting, and I'm alone in a hotel, and I had been out with all these endocrinologists and we've had tacos at a bar and I have no idea what my glucose was, but I had calibrated my CGM with probably tacos all over my hands. I go to bed. Well, this poor man, I'm in Nashville. He's in Dallas. This poor man is getting
Kevin Lee 36:09
the blood sugar was reading his 39. Yes, for those who don't know, is the world. The CGM can read anything below that he registered
Melissa Lee 36:19
as low. I have my phone on silent because I've been out with all these professionals. So he had called me 18 times. It didn't go through Sunday night disturb so far in two hours reading, like a 39. So hotel security burst into my room. Mrs. Lee, Mrs. Lee, are you okay? Do we need to call an ambulance, this string of expletives that came out of my mouth? I will not repeat on this good family show. But I was so mad and you know, I'm calling him and I'm like, I'm like 130 right now. Fine. by that same token, I have lots of like really lovely stories where You know, I'm alone in a hotel in New Jersey, and he wakes me up in the middle of the night to say, you know, wake up and eat something, honey. So, yes, there is a good story, but I must prefer the story where he had security break into my room. Oh, my God over over what nights? That was it.
So, you know, but to your question, we really were on the very bleeding edge of understanding things that you actually already deal with, with your son today and that people deal with today in terms of how will we actually establish boundaries on how much of my data you get to react to and for all the times that it is a benefit? Where are the times where it's like, no, I actually have to cut you off. We're now like seven years into him following my data. And so in some ways, I think we both see where people will get to when following data is the norm you know, should it ever scale by Live in terms of now, he doesn't look at my data all the time. Now he knows when to respond when it weren't so good. But it made me feel understood. It also made me feel a lot safer to know that just have somebody else watching my own back. I'll be celebrating 30 years with type one this year and celebrating is, you know, you've been
away there. But like to know that like somebody else is just there to pick up a little bit of slack you have for someone like where you are, it can be hard because I know when teams don't always appreciate or show their appreciation in the same way. But there is an appreciation for the fact that that you're there to pick up a little bit of slack just as much as there is resentment and issues with boundaries. And in times when they really need to just shut your assets off. And so I feel like we're just a little bit further down that road in some ways, you know, we'll let you know when we have it all figured out. But Exactly.
And what's right for us as a couple is not necessarily going to be right. For every couple, you know, there are couples that really feel like, no, my data is mine. And I don't trust you not to react to it in a way that's going to make diabetes any harder for me. And I think that that's what we 100% have, that I'm very fortunate to have is that I trust Kevin, to react to my data, the way that I'm comfortable with him reacting to my data.
Stacey Simms 39:33
So both of you, through this process wound up not only having two kids, but you made big job changes. And you now both work in the diabetes sphere. And I hope you don't mind I'd really like to talk about that a little bit. Because I mean, you mentioned the beginning. Listen, you're a music teacher. And you're right, your background, your music professional. You are Bigfoot for a couple years and now you are a tight pool and you're basically I'm going to get a But you're helping tide pool so that they can better train people and kind of explain to healthcare professionals and the public to kind of I look at that as translating, is that sort of what you're doing there?
Melissa Lee 40:12
Yes or no. So for instance, I know your family has just started with a new piece of diabetes technology. There were certain training modules that were there to support you. There's certain learning materials that were provided to your child's doctor so that they understood what they were prescribing. There's a user guide that comes with the stuff that you use in your family today, if you're buying things from companies off the shelf, and what the DIY community when we're talking about scalability, and how important that is to each of us having a knee accessibility, scalability availability like these important, how do we bring this to people in a way that they will actually be able to access tide pool announced about a year ago that they were going to take one of the DIY, automated insulin dosing systems and actually bring it through FDA review. Part of that is it has to have the kind of onboarding and support materials that your insulin pump he buys a medical pump and has today. So I am leading the development of all of those materials for both the clinics and the doctors, as well as for the end user to learn the system.
Stacey Simms 41:30
And Kevin, you're still a big foot. So you're a principal engineer there. What excites you about what you're doing there? Is it again about the accessibility because I know you know, Bigfoot is not yet to market but people are very excited about it.
Kevin Lee 41:41
Yeah. Accessibility is one of the large parts and reliability going through the DIY stuff. It's happening at an incredible pace change is happening there and things break things don't always go the way that you intended. There has to be balance there somewhere? Well, you have to have services. I mean, look at what happened recently with server outages and different companies, you have to be prepared for how am I going to support this time, I'm going to keep it running, you know, whatever the it is, it's that the reliability, we're all we're all human, that's humans behind the scenes, making the the changes and improvements that we rely on. So how do we do that safely and effectively as possible to minimize the impact and continue to increase the value to the user?
Stacey Simms 42:37
This might be a very dumb question. But Kevin, let me ask you, Melissa mentioned the the new software that we're using, and she's talking about control IQ from tandem, which is the software that we've got now. And there are other commercial quote solutions. There's other commercial systems coming out when you look back at all the stuff that the DIY community did, and is continuing to do. Do you feel like you guys really, really pushed it along? I mean, I gotta tell you and I know nothing. And I never even used Nightscout and people laugh at me. But I think we would never be close to where we are commercially. Does that add up to you?
Kevin Lee 43:12
Yeah, it adds up. It's not for everyone. You know, it is bleeding edge, the community, in a lot of ways drives industry.
Stacey Simms 43:21
You I'm not asking you to say specifically without this wouldn't have that. But it just seems to me that we would have gotten there eventually. But I don't know that the people behind Knight Scott and so much of the other things you've mentioned, really either got into industry and help push things along or helps with the FDA. You know, is it as kind of an outsider on this. Can you speak to whether that's true?
Kevin Lee 43:44
Yeah, absolutely. I think that it had you I mean, that's the nature of competition. There was an unmet need in the community and the unmet need was was fulfilled.
Melissa Lee 43:55
Well, what I would say is industry needs to see that something viability as an idea and so, I firmly believe that many of these things were floating around in companies as potential developments in the pipeline. What the community did with our DIY efforts is say, we are so desperate to this thing, we will just build it ourselves if you can't deliver. And so I think it helps prioritize like I've seen almost every company in the industry actually skip over other things that were in their pipeline to get to these things and reprioritize their own product roadmap to try to deliver. And I don't think it's, I it's not in a Oh, we better get this or the community is going to do it themselves way. It's a, okay, this is a real need, and we should, we should focus our resources on this. A lot of ways it's a playground for industry to concepts, live and die much more quickly in the DIY community than they do and it allows you to to iterate faster and find out what does and doesn't work, open source communities have existed outside of diabetes, obviously, it's a and throughout the last few decades, we've seen what happens in the open source world actually drive change in the industries to which they're associated. And so I think there are analogies to this in terms of like, what happens in the software industry, with personal computing with consumer electronics, so I don't, I don't find it at all odd or ridiculous to say that the DIY community and diabetes has actually resulted in change within industry. I mean, if only if, like you pointed out so many of those names, but we, you know, we're dropping them because we want to see people recognized for their extraordinary contributions, right. But all of those people, many of them have gone on to found companies, invent new things, join other companies. What's your Modeling about open source communities, regardless of field or genre or whatever is that you see that you see new people roll in with new ideas and lay new work on the foundations of code that were left behind and innovate and continue to innovate. And so we will see the DIY community around forever, they will continue to innovate. And we will also see many of those innovators move on into the industries in which they're working. This is a personal choice that they have to make them they'll go through the same decisions that we did. And not everybody. Well, I mean, Dana lewis is not associated with the company. We're not saying that that's an inevitability, right? But it's pretty common. You have to be pretty geeky probably to know of other open source communities. And I'm, you know, Kevin is way more well versed to speak about that, but in the way of fan
Stacey Simms 46:56
before I let you go, this all started because you wanted have kids, right? This this is the timeline that you set out from your weight the beginning here, and your kids now they're both in grade school, your daughter's 10, your son is eight. I'm curious, do they know their part in this story? Because it's not an exaggeration to say, and I'll say for you, it's not an exaggeration to say that you wanting to have kids sparked action in Kevin, that, frankly, has helped thousands of people. I know you didn't do it alone. I know. I know. I know. But your kids know the part that they played
Melissa Lee 47:31
to a degree like they know that we help people with diabetes. And they take that really seriously. As a matter of fact, when I was changing roles from my role at Bigfoot to my role at tide pool, my daughter's first question was like, but you'll still be helping people with diabetes, like will Bigfoot still be able to help people with diabetes like yes, it's all it's all good. We're all good. We're all still helping people with diabetes
and they've grown up with these things in the sense that we love to tell the story of when our son was about three years old and he would hear the Nightscout song that would was basically the alert that would play. And he knew that when I was low, there was a bag of sour ball candy on the top shelf of the pantry that came down. So he would hear that sound that Nightscout song and that song was sour balls to him and he was “sour balls sour balls!” he was all in or maybe like two I mean, he was little It was too and so like it became the sour balls song, right? You know, the other day he heard the Nightscout will song play and he said mom who undid that song and I posted something to Facebook. Well basically lane desborough and better that song or found it. I wrote something about like I just set my son down. I said, let me tell you the story of our people and how we came to the valley of silicon you know, which is of course not the way I said it to an eight year old but as you know amusing myself But essentially, you know, there is some of these folks that they literally do talk about uncle lane and Uncle Manny and Uncle Ben and like my daughter thinks she has a lot of uncles. But, you know, so they know that we've helped a great many people. And as they as they get older, and we can sort of expound on that, then I think, well, let's be honest, they won't care.
For a while, right? teenagers will be like we shut up about, oh, they'll care.
Unknown Speaker 49:30
They just want to know they care.
Melissa Lee 49:34
Someday, they'll appreciate it, and a different way, but that's what they know. Now,
Stacey Simms 49:40
Kevin, you also said this was about your commute, making sure Melissa was safe. Knowing that Melissa is a very strong and independent woman. Do you feel like she's safe? Did that check that box for you all this hard work?
Kevin Lee 49:53
Yeah, absolutely. This is kind of something that she went into earlier, but I really view the monitor. That I've done and the work that I've done is really just augmenting and trying to simplify and make her life easier. We first started dating, I actually told her that you will never find somebody work harder at being lazy than than me. And, you know, that was just the testament of I wanted to automate all the things that are just repetitive and predictable and easily managed to try to get that out of the way. And that comes from the background of operations and managing online sites. Being able to automate those those aspects have helped me feel like it's more safe. And then you know, other times like with with monitoring, it's great to be able to just see that you know, she's about to go out for a walk and then I happened to look over at Nightscout see how much insulin she has on board and where she is and say, you might want to run a temp basal. So it's just there. To try to augment and help her navigate it. And so yeah, it does give me a sense that she's safer because of this.
Yeah, that's right. I got really mad at him the other day, he was right. I was like, whatever. And I left the house and I went massively low. I was walking the kids to school. I was like, Yeah, well, fine. So you know, there's that two parents completely unfamiliar to you. And
Stacey Simms 51:21
it sounds more like my marriage actually diabetes or not. That's just a component of marriage. Yeah, she was right again. Oh, oh, well, you know, thank you so much for spending so much time with me. I love your story. I just think that there are just amazing people that I hate have diabetes. But I'm glad if you had to that you've done so much for so many others who have it as well. And I really appreciate you spending some time to tell us these things from years ago now because they're really are important as we move forward. So thanks for being with me.
Melissa Lee 51:56
Thank you so much for being interested in the story and for help. Others here are cranky, Stan.
Unknown Speaker 52:08
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 52:14
Much More information at Diabetes connections.com you can always click on the episode page and find out more transcript is there as well. I just adore them. I know the interview went longer than usual, but I couldn't help myself. And as I said in Episode 300, when I looked back on 300 episodes, Melissa really helped change my place in the diabetes community by inviting me to speak at master lab in 2015. That really did change how I felt about where I want it to be helped me find and focus my voice. I really can't overstate that enough. So thanks Melissa, for doing that.
And again, lots of information went by very quickly let them name dropping there in a good way. And I promise I will keep on the Nightscout crew. I may ask some of you as you listen to lean on your friends, I'm not going to mention any names here. But people that I have reached out to, and they're the usual suspects. If you search, we are not waiting, or Nightscout on the website, you'll see some big omissions. So I'll talk more about that on social media, we'll get them as a community. Maybe it's just me, you know, who's fascinated by this. But I do think it's a very important part of our history that we need to document because in a few more years, many of the solutions that people like Kevin were working on are going to be all commercial and all FDA approved. And isn't that wonderful, but I don't want to forget what happened. And I think it'll be great to look back.
Okay, enough about that. I got Tell me something good coming up in just a moment. And then stay tuned. Later, I'm going to tell you another change we made to how we use control IQ with Benny, but first diabetes Connections is brought to you by Dexcom. And it is really hard to think of something that has changed our diabetes management as much as the Dexcom share and follow apps. I mean, what really amazed me we started it when Benny was about nine years old, the decks calm and we got shareable. little less than two years later, and the most immediate change was how it helped us talk less about diabetes. And boy did that come just in time for us because that's the wonderful thing about share and follow as a caregiver, parent, spouse, whatever, you can help the person with diabetes managed in the way that works for your individual situation, and going into those tween and teen years. It sounds counterintuitive, but being able to talk about diabetes less what's your number? Did you check what's your number? You know, so helpful. Internet connectivity is required to access Dexcom follow separate follow app required learn more, go to Diabetes connections.com and click on the Dexcom logo.
I am cheating a little bit this week for Tell me something good because while I usually read you listener submissions, I saw this on beyond type ones Facebook page, and I just had to share they did a whole post about people with type one getting married and they wanted Hear the wedding stories. So they started out with a a big Congrats, by the way to Kelsey, her husband Derek, and this adorable picture of them. They're both low at their wedding and they're sipping some juice boxes. And Kelsey is part of the beyond type one Leadership Council. So congratulations to you both. It's a really adorable picture. I'm gonna link up the whole Facebook thread because people share stories like you know, I had my pump tucked into my bra and I didn't think I needed during the wedding or I was a bridesmaid and I had it there and I had to reach in, um, you know, other people who went low trying on wedding dresses. I mean, I remember this. So this person writes, I went low in David's bridal trying on wedding dresses. It's a lot more physical than you think getting in and out of dresses and slips, hot lights and just emotions. My mom had to run across the street and grab a Snickers. I was standing in the doorway of the fitting room and inhaling a Snickers, praying I didn't get any on the clothes, which just added an extra level of stress. I remember a Polish ties into the employee helping me and he was like I don't even worry about it. And he stayed with me to make sure I was okay. Another woman writes my mom came up to me right before we were set to walk into the reception. She told me she had hidden a juice under our sweetheart table in case I went low. I've been diabetic 30 years and my mom still carry snacks for me in her purse. Sure enough, right after dinner, I ended up needing it. And the last one here, being excited, nervous and unable to sit still. I did a long and intense bike ride prior to my evening wedding. Luckily we had a chocolate fountain at our reception and I spent a large chunk of the night at or near it, and this goes on and on. So what a wonderful thread congratulations to everybody who is talking about their weddings and their their wonderful stories of support. And the humor that's on display here is amazing. So I will link that up. You can go and read there's there's dozens of comments.
If you've got a story like this Hey, that's what Tell me something good is for send me your your stories, your milestones, your diversities, your good stuff, you know anything from the healthcare heroes in our community. With cute who put his first inset in to a person celebrating 70 years with type one I post on social media just look for those threads. Or you can always email me Stacey at Diabetes connections.com.
Before I let you go, I had promised to share the other change we made to control IQ. In addition to eliminating the long acting basal that we had used, you know, untethered for almost two years, we decided recently to completely turn off sleep mode. I know a lot of you enjoy sleep mode 24 seven, as we said back in our episode, gosh, in late December, when control IQ was approved in the studies, they called you folks sleeping beauties, because you enjoy that 24 seven sleep mode. But I found that since school has ended, and we're trying to figure out what to do with Benny for the summer, there is nothing really that's keeping him on a regular sleep schedule, and it's gotten to the point where he is now so nocturnal, and I'm hearing this about a lot of my friends with teenagers. Maybe I sound like a tear. Parents go to bed at like four or five, six o'clock in the morning. I walked into his room at eight o'clock in the morning the other day, I wanted to ask him a question. I was like, I gotta wake him up and he was awake can come to sleep yet. You know, it boggles my mind. It's all topsy turvy. And we'll get back into a routine at some point, but I'm not really willing to make a big fuss about it. He's key is keeping busy overnight. I guess his friends are up, I don't know.
But anyway, the point is, he's eating it really weird hours. And when he was in sleep mode, we noticed that it wasn't helping as much right because it doesn't bolus you in sleep mode. It only adjusts Faisal. So if you under bolus for his you know, Pad Thai at two in the morning, it wasn't helping out and true story. I asked him about that. Like, what's this line? And what happened overnight here, were you sleeping He's like, No, I was in the kitchen eating leftover Thai food.
So we decided that his numbers during the the quote, day when he was sleeping, we're hovering right around 90, maybe a 110. I mean, it was very in range, right? No need to mess with that. So I didn't think we needed to add sleep mode. And I did want to predict when he would actually be sleeping. So we just turned it off. And that has made a big difference too.
So I guess the bottom line is figure out what works for you for your individual situation, the weirdo wacko situation, if it's us, but you know, use this technology to benefit you, whatever way that is, if it's sleep mode right now, 24 seven, if it's no sleep mode, it's exercise mood all the time. And it'll be so fascinating to see. And this ties back into the DIY movement, right? It'll be great to see the flexibility that we will get in the next couple of years because, you know, Medtronic had a tie a higher target range, because they were first with the hybrid closed loop. tandem has a lower one Omni pod, we'll have a more flexible target, you can set your own target when they come out with horizon and of course, tandem and everybody else is going to be moving to that direction as well. And it just keeps getting better.
But it gets better because people like Melissa and Kevin Lee pushed and pushed and without these folks, and there's so many of them, of course, right who said we can do it better, we would not be where we are. I truly believe that technology companies would be five or six years behind and if you're new To the show new to the community and you're excited about, you know, control IQ or horizon or whatever you're using. Or maybe you're using, you know, loop off label with Omni pod, I would urge you to go back and check out our earlier episodes from 2015 and 2016. And learn about the really early days of the community, obviously, by 2015. We're talking about things that happened in the early 2000s. You know, I don't want you to misunderstand that. That happened in 2015. But you know what I mean,
okay, obligatory book commercial. And if you've listened this long, you maybe you own a copy of the world's worst diabetes mom, if you own it and love it, do me a favor post about it. The best way to word of mouth about the podcast and the book is always if you could tell a friend post in a diabetes group post on your own Facebook page, you know, I love this book. It's on Amazon, highly recommend it. If you've read it, and you don't like it. Forget that, you know, you know, just recycle the book. It's thanks as always, to my editor, john Buchanan's from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 1:01:09
Diabetes Connections is a production of Stacey Simms media.
Unknown Speaker 1:01:13
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