Scott Benner 7/14/23 Scott Benner 7/14/23

#954 Dexcom COO Jake Leach: G7, G6, Type 2 and your Questions

Dexcom COO Jake Leach is here to talk about G7, G6, Type 2 and answer listener questions.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends, welcome to episode 954 of the Juicebox Podcast.

Today, we welcome back a guest. That's been here quite a few times. Jake Leach. Jake is the Executive Vice President and Chief Operating Officer at Dexcom. He's going to answer your questions, a bunch of questions sent in by listeners, my questions, talk about a new product, a few other things that are on the horizon, and we're gonna find out if that Dexcom is ever going to go to your Apple Watch. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. Big news kids that cozy Earth offer code juice box at checkout now saves you 40% On your entire purchase. Go to cozy earth.com Enter the offer code juice box at checkout and save 40% off your entire purchase. You'll get a free year's supply of vitamin D and five free travel packs with your first order at drink ag one.com forward slash juice box get a green drink drink it with me in the morning like virtually because I'm drinking it if you're drinking it, we're kind of doing it together. But I'll tell you about the advertisers and then we're getting right to Jake this episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter contour next.com forward slash juicebox. Check out the meters, the second chance test strips and everything else happening at contour next.com forward slash Juicebox Podcast is also sponsored today by us med us med.com forward slash juicebox. Now us med is the place where Arden gets her diabetes supplies from actually her Omni pod dash comes from there and her Dexcom g7. Yours good to you can get your free benefits check right now by calling 888-721-1514 or by going to my link us med.com forward slash juice box, type those links into a browser or click on them in the show notes of your podcast player or at juicebox podcast.com. When you use my links, you are supporting the production of this show. And keeping it free and plentiful for everybody. So you can get more stuff like this with Jake. Jake, how are you?

Unknown Speaker 2:37
I'm doing great. How are you doing?

Scott Benner 2:38
I'm well, thank you. It's nice to see you again.

Unknown Speaker 2:41
You too, man. It's been a little while. Yeah, well,

Scott Benner 2:43
there's a good, there's a good reason to get back together. So I'm excited. Yeah,

Jake Leach 2:47
yeah. g7 approval, I think was last time we chatted. Yeah,

Scott Benner 2:51
right. Right around that time. I have a couple of g7 questions for you. I'll hold off till later. Okay, cool. But I did want to find out what was going on. So it sounds like you guys are bringing some new products to light. And I wanted to hear about those.

Jake Leach 3:05
Yeah, yeah, we are. Absolutely. Yeah, we recently announced a exciting new product where we're looking at CGM for people who have diabetes, but not on insulin. So really, really focused on the needs of those users, which are different than, you know, many of the needs of folks who are taking insulin. You know, it's basically trying to build a product that's for, you know, there's about 25 million people in the US that have type two that aren't on insulin and don't have, you know, severe hypoglycemia events. So that there's really, you know, they could, they could use a CGM, like G six, or G seven. But we're really this idea here is let's design a product that really meets their needs. And it's something that, you know, they can really get engaged with.

Scott Benner 3:52
What is that a? Is that an easy timeline? Is it yours? Because the reason I'm asking my brother has typed too, he was just here visiting. And I may or may not have slipped him an old GE six transmitter and two sensors and put one on him while he was here. And inside of the first 10 days, he was already understanding what food was doing, that he never understood before, no matter how much a doctor tried to explain to him or I tried to help him. It wasn't until he saw it that it started to make sense. And then the next text I got from him was, do I put this next sensor on now? Or do I wait? Or like he already had that feeling of like, oh, no, I want this thing. So is this going to be like a long process FDA like that whole thing or? No? We have

Jake Leach 4:37
to get it approved by the FDA. But it's so a product we plan to launch next year? That's great. Yeah, so it's short term. It's built on the g7 hardware platform, and it has a totally different mobile app that goes with it.

Scott Benner 4:53
Okay. And you think insurance companies are gonna get behind it?

Jake Leach 4:57
You know, ultimately we have to show you But to generate enough evidence in this population of users to show the benefits, I mean, one of the most exciting things that ADA that just happened last month was there was quite a bit of data around use of CGM in this, this population that's not taking insulin, and looking at outcomes that can be generated there. And just like you mentioned, by your brother, it's like, that type of insight that you can get from wearing a CGM, it's, there's no, there's nothing, there's another tool that can give you that. And so that's why I really think this is something that it will be highly engaging for this group, it's something that they'll really find helpful.

Scott Benner 5:39
I would say not just the Insight either. But it provided a motivation for him that he couldn't find us anywhere else. And just he you know, he would call and say, Oh, eight this thing. And I saw what it did to my blood sugar. And that was the first context he had for it. He's like, I'm not gonna eat that anymore. And it of course, it's frustrating for me, because in my head, I don't know how many years ago I was talking to God, it might have been Kevin, and he said, I was wearing a sensor. And there's a couple of foods I've cut out of my diet because of that now, and it's just really valuable. Do you see it as something they would need forever? Or do you think it would be to help them adjust their lifestyle? Or do you think it might be different for different people?

Jake Leach 6:18
You know, I think it's gonna be different for different people. I mean, we did you know, there was a study that we saw, you know, greater than 90% utilization of CGM in this population, we basically looked at a group of about 7200. People, they're using G six, and in that population that was greater than 90%. Were so that was a strong signal to us. It says, Okay, I think people are gonna like this. I, you know, it's the real time feedback. That's the key. Like you mentioned, the motivation factor, it's hard to get motivated when you get an A one see every six months. But when you get that live feedback right away that says, This is how, you know, either that food choice or, you know, activity, stress. did sleep a lot. You can see how that impacts you.

Scott Benner 7:01
Yeah. 100%. Okay. So that you're shooting for for next year? Yes, absolutely. All right. Anything else coming?

Jake Leach 7:10
We got We got lots government, I mean, even just the g7 platform, you know, we just launched it last year, we've got lots of things going into that we've had, if you've noticed, but there's been a pretty steady cadence of app releases, as we've after we launched G seven. Some of that's, you know, small bug fixes, but all bunch of it was pretty significant functionality, you can now verify an account or get lost passwords using a text message code instead of going into the email. So that, you know, much faster we enabled silence all sound saw wasn't in the original g7 is now in there. And then we just released some updates for the widget on iOS to to make that update more frequently and be more functional for users. So it's been been about five releases. Since we launched in, there's a bunch more coming. One thing that we talked about, recently, around the time, VDA is the director watch is finally coming. And so we're very excited to put that into the product. We're shooting for getting it in by the end of this year.

Scott Benner 8:14
Wow. Okay, so you're gonna, you think, Well, let me ask my question a different way. I feel like I've noticed, because I've been around for a number of different releases, that when the device first comes out, it comes out as is. And then there are things I feel like I'm seeing in its functionality, like not just stuff you can see, right, but like, you know, a screen or something like that. But I feel like things like connectivity, even you know how accuracy works. I feel like you guys are tweaking that in the background. Is that happening? And does that happen with all new stuff?

Jake Leach 8:50
It does, we're always looking to improve the product, we get lots of feedback, right? That's one of the number one things we do is listen to feedback from users, about new products, but also about current products. And so you know, working on Bluetooth connectivity, further enhancing that adhesives, you know, the performance is all of those pieces we're always working on in terms of improvement. We did it with G six, right over the number of years that it's been out there, we've continued to improve it. We're gonna keep doing that with G seven for all of our current and future customers.

Scott Benner 9:23
Some people are asking me, Is there a difference in Bluetooth distance for G six for NG seven from the phone to the device?

Jake Leach 9:31
Not so when we did all of our testing? We haven't seen that. But we have had certain users that have run into that. They say, hey, look, my G six worked a little bit stronger than my G seven. So we've been analyzing that and take determining if there's anything more we can do to further enhance the Bluetooth. One thing we do know is that as we looked at the every time a new phone model comes out, we do quite a bit of work on the analyzing the way that the phone connects to our on our device we get, but we get very consistent performance with our receivers and our pump users. But on the mobile app, sometimes there is, you know, phone will come out. And we do make changes, to ensure the product connects better to different phones. And so we're always kind of doing that in the background. And so you know, anybody's having that type of an experience with GS seven, I'd say definitely call us and see, we've got lots of tips and tricks to help ensure that you get good connectivity. But we're also making improvements along the way here.

Scott Benner 10:29
It's confusing for me when people ask because Arden has been using it now, G seven, I don't know for a number of months. And I haven't seen like a disconnection of data more than more, more or less than I saw it before. But she's also 19. And I'm assuming her phone is like, glued to her somehow. So I don't know if that's the case. Because I mean, fair enough. I've seen her walk from one room to another, stay out there and come back. Now what I'll say is that when she does come back into the room, I see it pick it back up much faster than G six, like, that's my, you know, but my, my experience at least. But how much of it has to do with people's phones? Like, I mean, is it newer phones, stronger Bluetooth in some phones and other phones? Is that Is

Jake Leach 11:16
it you know, all each case is different. But what does happen? Sometimes it's just basically how people have their phones configured. I've even had experiences where, you know, I have like rock solid connectivity, and all sudden, I'm starting reading some issues. And I'll cycle the Bluetooth but also cycle the Wi Fi. And what I found is, you know, a lot of our mobile phones, the Wi Fi radio on the Bluetooth radio, often the same silicon the same chipset. And so sometimes, you know, if something gets hung, there's tons of software in our in our phones, right? And so, you know, there's always that, turn it off and turn back on to help connectivity. But I think, you know, it's it's can be unique to, I don't think it's necessarily the full models. It's more around just how phones are set up and how they're used. But, you know, like with any new product, we're going to keep learning. We you know, all of the data that we get back, we analyze for performance of the phones and Bluetooth and sensors and everything else. We do make enhancements based on that feedback.

Scott Benner 12:14
That's great. Okay, can I jump to some questions? Let's do it. Yeah, absolutely. I'm gonna, I'm going to, I'm going to hit some miscellaneous ones first and then go to stuff that's kind of grouped together. Can you help me dispel the myth that a G SIX sensor with the code 9117 is somehow not as good as a sensor with another code on it? I love a CGM just like the next fella. But you also need a really accurate blood glucose meter contour next.com forward slash juicebox. You will love the line of meters from contour Arden is using the Contour Next One, the contour next gen is brand new, they are all incredibly accurate. They featured Second Chance test strips, meaning that if you for some reason don't get the right amount of blood the first time you can go right back, get more and it will not affect the accuracy of the test or ruin the strip in our lovely. So you don't have to be perfect to get a great result. Contour next one.com forward slash juicebox. It is possible, it's incredibly possible that the meters and test strips may cost less in cash than you are paying right now. For a possibly inferior product through your insurance. Isn't that crazy? Go to the link contour next.com forward slash juice box when you get there. Hit the button that says buy now you understand I'm typing into the browser right now the browser that's how the kids talk I say browse by now big orange button you click on it. What it'll show you is that you can get these supplies@walmart.com Amazon Walgreens CVS Pharmacy online, Meijer, Kroger target Rite Aid, these are all online links clicky Clicky. Right there you're buying. Go take a look. Why don't you you can save time and money by buying contour next products from the convenience of your home with my link contour next one.com forward slash juicebox. And if you want to dig down deep into your data, dig down deep into your data. Wow, there's a lot of these. If you want to do that, use the free app that comes with the contour meter, put it on your phone, bing, bang, boom, all of a sudden you're keeping track of things stuff makes more sense. You can make better decisions. Check it out, get started today. Use the link. It's in the show notes of the podcast player that you're looking at right now. Or it's at juicebox podcast.com. And of course you can just type it into a browser. Here's something else you could type into the browser. Us med.com forward slash juice box and A plus rating with the Better Business Bureau. They accept Medicare news nationwide and abroad, broad swath over 800 In fact, big big bunch of private insurers What am I saying your insurance is probably accepted by us med give them a call and find out or go on the link 888-721-1514 or us med.com forward slash juice box. Now Scott What am I gonna get us Matt how about this US med carries everything from insulin pumps, and diabetes testing supplies the latest and CGM. They've got the libre two and the libre three they ever got the Dexcom G six and the Dexcom g7 Omnipod five Omnipod dash t slim baby. They got it over there. In fact, the number one fastest growing tandem distributor nationwide. And how about this? Because we're talking about Dexcom today, how about the number one rated distributor in Dexcom customer satisfaction surveys art and gets her supplies from us Med and you could to get your free benefits check today and see what US med means when they say they want to give you white glove treatment, better service and better care. That's what US med is offering you us med.com forward slash juicebox 8887 to 11514. Hey, I appreciate all you guys listen to the ads, I do my best to make them fun and jazzy and informative. Now let's get back to Jake and find out the answer to my question about the code 91170. No, not the 9117.

That a G SIX sensor with the code 9117 is somehow not as good as a sensor with another code on it.

Jake Leach 16:52
So that is a very common code. It's one of the more common codes towards the center of the distribution. So it's no that just I think it's a more common code. It the other thing I've noticed too, is when people do have issues, you always trying to find something to associate it with whether it's sometimes it's just the difference between new products and an old product. Or maybe it's that they've seen that code frequently. That is one of the more frequent sensor codes because it's in the middle of our calibration distribution.

Scott Benner 17:19
I just wanted somebody besides me to say it. So yeah, sure, I get tired.

Jake Leach 17:24
I'll tell you a funny story. In the old days when we were read in sensors, and before we had the the calibration stuff all figured out. I would just type in 999117 was my normal code that I type in that it would take. So

Scott Benner 17:37
are you guys working on getting approval for in hospital use of a Dexcom? Yeah, actually, we are.

Jake Leach 17:45
Yeah, yeah, the, you know, the current CGM CGM aren't basically approved for use in the hospital. But one of the things that we during COVID was there was an emergency authorization that the FDA gave us to allow us to allow Basal hospitals to use our product, and they could buy it from us. And so we had many hospitals come and ask for the product. They put it on patients, you know, during the time when they had a lot of patients COVID And it helped them, you know, they weren't utilizing as much of the protective gear because they weren't having to go fingerstick the patients often they could put it on someone, they were worried about glucose excursions on that. So they could basically I mean, G six, this was G six timeframe, it was a great product, it's a great product. But you know, for a hospital workflow, they basically had the phones like sitting outside the room, or sometimes they use receivers, some set up their own follow networks, to be able to follow the data. So you know, they were kind of using it, it was a super beneficial tool to help them manage blood sugars during during while people were in the hospital. But what we're doing now is taking the product, taking the substance sensor technology and designing a product that specific ly designed to fit into the workflow in the hospital. Think like connectivity data data display. That's a big part of the product development. The other thing we're doing is we're running clinical studies that show the performance of a subcutaneous sensor in the hospital, basically showing we're seeing really good performance from these studies. But they're a little bit longer because you have to enrolled people who are actually in the hospital. The FDA wants to see the sensor in that intended use environment just because it's such a critical place to make sure your sensors performing well, drugs, your parents is all that stuff that can happen in a hospital is what we're basically doing the study to show that the sensors are great there

Scott Benner 19:36
is the idea of sort of, when you're done with it, a nurse would be able to look up the same place where the blood pressure is and see the blood glucose.

Jake Leach 19:44
That's the That's the vision. It's the you know, glucose, the fifth vital sign so that's really important. You know what, you know, we've worked in the hospital for many years. In the past we had a program that we were focused on more of a intravenous sensor but the thing that I took away from that was that I spent a lot of time in ICUs and in the hospital environment and just saw the the teams there need better tools to manage people's diabetes or blood sugar's even a lot of people have blood sugar issues from stress, stress induced hyperglycemia. That's not they don't even have diabetes, but they're just the tools are not good. The finger stick is so you know, to get actual frequent measurements, you go in and prick and someone's finger every hour was the kind of the protocols that I saw in the ICU. So yeah, a continuous monitor makes perfect sense for that environment.

Scott Benner 20:32
I think anybody who has been through it knows that makes sense. Obviously, the work has to happen with the FDA, but Arden had an exploratory surgery once I explained the loop to them in in the pre op, and the doctor was like here, put that in a bag, leave that under the table. He wanted her algorithm to run during a surgery. And I only heard about it 30 minutes before and he was like, Yeah, we're good with that. So yeah, yeah, hopefully, hopefully

Jake Leach 20:54
that works out. Alright, one less thing to worry about. Yeah, exactly.

Scott Benner 20:58
All right, here's the scary one, you made a new thing. So everybody's worried you're gonna stop supporting the old thing. So Oh, yeah, G six is that

Jake Leach 21:08
it's we're gonna so we're building G six now. And serving all the customers ng six particular AI D users. Quite a few of our customers use automated insulin delivery systems. And those are still working on their G seven integrations. So now we're not taking g six away. We are encouraging people, though, to upgrade to G seven. So you continue to get the latest updates and technology. But we'll support GE six for quite a while until everybody's got got the upgrade. You know, upgrade timing is different for everybody. So we got to work through that. But yeah, G 16 is running great, super happy with the output that we're seeing. So yeah, the other point that I'd like to make too, is that, you know, we are, you know, we've got our g7 we've got this new product for non insulin users. But we're still very focused on innovating in the ad space and in the sensor space, and you know, automated insulin delivery, MDI, multiple daily injection, we're focused on continuing to innovate there, we've been the innovation leaders there, and we are going to remain that. So just because we are launching new products that benefit more people. We're not taking off our current customers.

Scott Benner 22:17
Yeah, I mean, is the company. I mean, you guys, are you sticking fingers out in a lot of directions? Is the company growing? Are you taking more staff on? Or is this something that you're able to do with your, your current workforce?

Jake Leach 22:27
We know we do we, we grow our r&d, Greg, kind of team and all the folks that work on product development that that has grown over time, it's actually been an exciting, fun kind of process of going from developing just one thing right now developing multiple different products that utilize the core CGM technology, but you'll have different embodiments of the of the physical product. And so the team has grown. We continue to, you know, grow revenue and the customer base. We're also kind of we don't grow our expenses at the same rate, as we bring on new customers. So we are we find efficiencies and how we work. But yeah, we make really healthy r&d investment. And that's a really important part of our growth story. And also ensuring that as many people can benefit from CGM, there's still you know, hundreds of millions of people out there that could benefit that don't have access to the product you know, they either can't afford it. They don't have an insurance coverage. It's not available in their country. There's there's all those things that we got to get after.

Scott Benner 23:27
Yeah. Oh, please. The bottom my list here, India, Australia, Japan, those are the three people are like, When can I get g7 is so that's not lost on me at all, that there's stuff to do still, you know, you you hear from people all the time, especially now the world's opened up, people are more aware of what they don't have, and the benefits of it. And I think it's hard to hear about the benefit of something like that and then not be able to put your hands on it. I mean, really frustrating, especially around health, you know, and I made myself laugh and you said you're growing and bringing in new customers with I forget exactly how you said it because when I thought my head was the ads on the podcast are very affordable. I was giving myself credit and my love it. No

Jake Leach 24:12
awareness. You know, awareness for CGM is so much greater now than it was even a year or two ago. But there's still people I meet that have never that have diabetes that ever heard of the CGM. So? Yeah, well, you know, actually, I was at South by Southwest doing a panel, and we actually asked the audience, you know, it's about 2000 people who here knows someone with diabetes, almost every hand raises. Then I asked him, Okay, who knows what a continuous glucose monitor is, and it was a very small fraction less way less than 10% raise their hands. So it's like there is, you know, awareness around technology that can benefit that we started to work

Scott Benner 24:47
on I did a talk in front of 200 couples, adult couples, at least one person in the couple had type one. And I started a, an uproar when I asked about if everyone had glucagon in their home and It was fascinating how few people knew what glucagon was, or understood how dangerous insulin could be. And these were not like newly diagnosed people, for the most part, it was really, like fascinating, kind of stunning, actually. So I think the work is always there to try to get the word out to people. Yeah, a 12 year old boy wants to know if they'll ever be a poke free sensor.

Jake Leach 25:24
Well, I, in the time period that I've been doing this, which is, well, north of 20 years, I've never seen a technology that works non invasively, meaning you don't have any sensor. But what I would say is, if you looked at what, you know, she, she she for, and some of the previous generations started with that manual applicator, which you're familiar with Scott, and now where we are with G seven, with a much smaller sensor, very quick insertion. Most most of the time, you don't even feel it. So that's, that's our focus is on making, you know, sensing technology that is as minimally invasive as possible.

Scott Benner 25:59
I have to tell you that every time I see somebody put up one of those like, I don't know, a picture of a watch, and they say it's going to tell you a glucose, I think that's not gonna work. I mean, I'm not an engineer. But that seems like that's not going to work, not with current technology, right? Like, it's not to say that in the future, we don't figure something out. But at the moment, you what you do is is the best way to do it at this point.

Jake Leach 26:21
Yeah, basically, there hasn't been a technology, you know, there's a lot of light, you know, infrared light, radio frequencies, all kinds of different techniques have been tried to send a signal into the body and then get a signal back that somehow represents glucose, it just, glucose is a particularly challenging molecule to measure. It's not like oxygen, right, where you can put a pulse ox on somebody's finger, and get their oxygen level in their blood, from a light shining through their their skin, it's just It doesn't work that way for glucose. And so having the sensor probe actually in contact with the glucose in your body is one of the ways that we make the sensors as accurate as they are

Scott Benner 26:56
number of times that I've spoken with different people from Dexcom. It's been brought up that the data that you guys are able to see that maybe one day it would help people make decisions about insulin. Is that still something you think about? And are you working on it?

Jake Leach 27:11
Yeah, 100% in a couple of different avenues, right, one of the avenues we're working on is, you know, we use data to tune our automated insulin delivery algorithms. So you know, our first generation we algorithm we launched with tandem and their control IQ, we have another generation algorithm that we're working on, that we talked a little bit about at attd. This this year, and it was really around full automated control. So actually doing boluses and controlling correction Bolus isn't everything, Basal everything with just an algorithm. And so we in that we've used quite a bit of the kind of glucose dynamics that we see in our in our data, to to help develop that algorithm. We also see kind of you think about Basal insulin users, you think about MDI users, there's a lot of things we can do, to provide further insight to help them you know, make make the disease easier to manage. And so they'll they'll be predicted, as we've started to kind of build out our software capabilities, you're seeing g7, we're launching more more frequent releases to the mobile app, you're gonna see some more stuff there in the future on insulin as well.

Scott Benner 28:25
So I have a couple of questions here about in pen and why it's not real time, like it used to be. But my my guess is, it's because Medtronic bought in pen, and they probably would prefer if their users use their sensor. Is that is that the reason? Or what is the reason that happens?

Jake Leach 28:41
No. So so the in pen is, you know, it was purchased by Medtronic, but we still support connectivity to it. And we're working with Medtronic to continue to provide that support and maybe even expand it will see, but no, I think, you know, for my perspective, is that, you know, Medtronic, you know, it's a great pen for people who are using it, and we make a fantastic sensor and why why shouldn't those two go together?

Scott Benner 29:06
That's great. Because it is a it's a really important device. And even people who only use it for a time before they go to a pump, talk about how valuable what they learned is from it, so Okay, well, I'm glad to hear that I just that was me, I was being cynical. I just assumed they were like,

Jake Leach 29:19
well, you know, it's I mean, thinking about you, technically, competitors were working together, but it happens all over and definitely something that we're comfortable with.

Scott Benner 29:27
Okay, cool. g7 questions specific? What's the difference between entering a blood glucose versus calibrating? Like, why would I enter one but not use it as a calibration?

Jake Leach 29:38
Maybe you want it to show up in your data reports, but you don't want to use it as calibration. It was it was I don't know how many users actually use that. But it was definitely something that came back in user feedback where they wanted to be able to track glucose but not with a finger stick meter but not always use it to calibrate okay.

Scott Benner 29:56
I also saw this question enough that I want to ask it of you. I don't have any personal no experience with it. People say they're traveling internationally and having trouble restarting new sensors because it feels like the app is like geo locked or something like that. Is that real? Or is that?

Jake Leach 30:10
Well, there's, well, there is there is basically an important component here. But it can get confusing, so I'll explain it. So yeah, I think users, what happens is, the important thing to know is that every country that you go to, and you set up your phone in that country, they all have different app stores. So if I take my US phone, and I leave it is, you know, it's my account, my my, you know, I'm an Android user. But for the Apple account to when I traveled to the UK, and I looked at the App Store, I'm still looking at the US App Store, even though I'm physically in the UK, I'm looking at the US App Store, I can download a US App. One of the things that happens though, is if you start using a UK phone that UK based, like you picked up a phone at a store, there's something that phone will go to unless you like entering all your us information, it's gonna go to the UK App Store, and download the UK app, which is different functionality than what you have in the US. And so when you basically are traveling, you need to use the phone that you you know, your normal phone and your normal account, and everything should work just fine. Okay, the sensors aren't different. They're not the sensors don't function different. But there is differences in the in, you can't take a US account and say, I'm in I'm in the UK now. And unless you want to call tech support, we can actually correct that on the back end. But the idea there is that, because we have one global app that configures itself to the functionality of each of the countries of which you purchase your sensors and reside. So it's basically locked into your account and where you live normally,

Scott Benner 31:46
but it wouldn't be necessary for like, like when I have to call my credit union and tell them I might want to use my ATM card in another country. I don't have to call.

Jake Leach 31:54
You'll be fine. Yeah, yeah. And it's still the follow network in the share network. It's actually one of the interesting things where we've got a US person and someone owe us wants to follow them. That owe us person has to download the US follow up. The Oh us follow up won't connect to a USF data privacy, all kinds of, you know, back end stuff there.

Scott Benner 32:13
So I don't know how specific you can be about this. But I'll just go in order that it's written here. g7 compatibility with I let any idea how long that will take.

Jake Leach 32:25
That's a really up to beta bionics. You know, I think they're just getting going with the eyelid ng six, which has been super exciting. So Ada saw a couple of people wearing it saw some great time and range numbers from those folks. And so, you know, it's a great product, and we're ready to support them on g7 as fast as they can move, but

Scott Benner 32:46
you know, they're just brand new coming to the market. So I don't actually know the specific timing. Okay, but I would assume there's a window in your head to where g six is going to be gone? Even if it's Yeah, even if it's a couple of years from now. So it's got to be at least in that window. Yeah, you got it. What about on the pod five?

Jake Leach 33:05
So they're, they're working hard. I mean, it's been a while I've seen quite a few, you know, open systems up and running on the development side. So I they haven't made public comments about when, when their timing is, but you know, I know they're working hard on it, and we're ready to support him when it comes out.

Scott Benner 33:20
I'm sorry, I'm gonna just ask for about tandem to say they all about the same answer or because Play Doh

Jake Leach 33:26
no tandems actually tandem said publicly that they're planning to launch a around quarter three of this year. So that's pretty soon, right. We're already in cute quarter three with the July. So you know, in that timeframe there. And, you know, I had to I mean, reasonably, they're not on track.

Scott Benner 33:45
So I have to I have two questions about watches. The first one is, you mentioned, you mentioned the Apple Watch, but we didn't talk about other, like watches the integration for other kinds of wearables to

Jake Leach 33:55
Yeah, so right now we support the same things. We did ng six, with the Android Wear platform. And we also support the iOS, the Apple Watch, when we go, excuse me, we go to direct to watch. The initial foray there is on the Apple Watch. That's what we spent quite a bit of time working through making an Apple watch a full functional receiver, because that's what we have to do to ensure that you get the right alerts, and alarms and all the things that are really important from a safety perspective, that those are always reliable on the watch platform. And that was basically what we've been working on for a number of years with our team and also the team at Apple on the watch OS to ensure that you can reliably get those alerts because that's the you know, if you think about you know CGM it's one of the most important things it does is give you alerts when you're out of range,

Scott Benner 34:47
the first time that it's available for the Apple Watch, I'm going to find out where you are and send you flowers because I'm going to be super excited that we're never going to talk about this. Like

Jake Leach 34:57
there's a there's a large team that's very excited that this is finally coming to fruition. They've been working on it for a long time. Yeah.

Scott Benner 35:04
Somebody told me that the Apple Watch question with XCOM is like asking Elon Musk when the cars are gonna drive themselves. Like, oh, it's happening next month, don't worry.

Jake Leach 35:15
I like I like that analogy. It's one of those like, it's gonna happen as fast as it can, yeah, put a finger on it. But yeah, we're feeling really good about where it is now.

Scott Benner 35:22
Nice. So I'm going to just say, for me, personally, of all the things that I wanted you to do, that didn't happen? I am probably most disappointed, I guess I'll say about there not being Delta. I knew you're gonna say that. That would that would make me a little snippy. I got a little sad when I saw it, wasn't there? Is there a reason it didn't happen? Or is it coming in the future?

Jake Leach 35:48
It's one of the things on the on the priority list. I don't exactly know where it ranks, but I know it's on there. So like I said, with the faster app releases for G seven, you know, we we've already, you know, released more functionality into G seven, within a short period time has been available than we do with G six last year. And so you'll see more and more app releases, we're kind of targeting the teams, we're targeting almost one and one every six weeks. So new functionality each time

Scott Benner 36:14
I saw the app, and I thought I hold no sway at all, I Dexcom.

Jake Leach 36:19
I wouldn't say that. I didn't

Scott Benner 36:21
think I did. But I was I was like, Oh, I definitely don't. People are asking about the graph looking jumpier I don't know another word to use, is there something you can explain about that?

Jake Leach 36:33
So it is that so there's there's less smoothing in g7 than what was ng six. And a lot of that has to do with trying to heighten the performance of the sensor. And its ability to detect glucose, and what kind of changes and turnaround and rapid rates of change and all those things. And so with the performance of the sensor being better than G six, we turn down the filtering. And so you're gonna see a little bit more jitter there's no reason to think that it's less, it's actually, you know, we know G seven, we studied it, it's more accurate than G six. But the perception of the I've had multiple people ask me, Hey, my lines, kind of, you know, it's not as smooth as it was on G six, is that a problem? And it's like, no, no, it's actually measuring glucose quite accurately.

Scott Benner 37:16
Okay. Speaking of accuracy, before I go back to my next question, is there are we at the ceiling? Or is there more? Do you there's more to go? There's more to go?

Jake Leach 37:25
There's more to go? Yeah, I mean, I want to continue to tackle, you know, sensors that, you know, every so often you'll get a wonky sensor, right. And it there's a lot that cause can cause different things to happen. But my goal is every sensor works 100% of time, I think there's still improvements can be made on the first day of where, right, sometimes first days is more variable than the rest of the where, and also on those latter days, you know, as we continue to extend the life of the sensor, you know, ensuring that you've got good performance all the way to that last day is there. There's plenty more to innovate there. From both the sensor technology as well as the algorithm that powers it.

Scott Benner 38:06
Arden got up yesterday morning. It was my birthday yesterday. So we had a whole big day planned. My son was home and we were all doing stuff together, right? And she got up and she said, hey, my Dexcom is going to expire in like eight or nine hours. And I was like, oh, put a new one on now. And you know, like, so she's just home from college. She's like, is this the thing you were trying to tell me in college? I'm like, yeah, like, I'm like, put the new one on now. And then she wore it for, I don't know, five, six hours. And then when there was a lull, I said, Okay, now, you know, disconnect the other one and put the new one on. And I'll tell you, man, it just popped back on it read exactly where the other one was. And I was like, This is amazing. Like, I love it. Everyone should be trying to accomplish that if they can. Really fantastic. More on g7. Is there a right and wrong way to do the insertion? And people want to know, why is it only cleared for arms?

Jake Leach 38:57
Okay, yeah, so two great questions. You know, I know that there's no right or wrong way to insert it, you basically just have to push it down hard enough so that the little safety guard is you know, ensures is pressed up against your skin and the press the button you know, when I've worked way where sensors, I wear them farther on the back of my arm than on the side because you know on the side sometimes you'd run into things, you see belts, whatever so I like kind of like it on the back. I find it's more protective back there. And then from arm in wherever it is abdomen where basically when we did this study that we saw the best performance in the arm and so that's what we got cleared by the FDA but if you look outside the US our labeling has both arm and abdomen in the US based on the way the study went in the way we wanted to get the product approved through the regulatory course and also the performance we just we settled on let's let's go with arm

Scott Benner 39:48
I'm going to save 30 seconds at the end of this to tell you a funny story that I don't think I can record but I'm gonna make myself a note. It's about something Arden said that cracked me up.

Jake Leach 39:56
I can't wait to hear. Happy birthday by the way. Oh, thank

Scott Benner 40:00
you. I'm 52. So I'm feeling pretty old. But my hairs stand dark. So I feel like I'm ahead of something. Also,

Jake Leach 40:08
you're ahead of me for sure. Check that out. Check your handsome man. And

Scott Benner 40:11
there's no reason for you to say that. I, I found that we go via about four months ago, so my life is getting much better. It's crazy. I swear, I just got nothing to do with our conversation, but 25 pounds in four months.

Jake Leach 40:25
Congratulations. But it's it's a fantastic therapy. Yeah, it

Scott Benner 40:29
really is. And I'm starting to see people use it with type one and watching their insulin resistance, or not just resistance maybe, but their insulin needs are dropping, which is really fantastic. I really feel like you're gonna see the the semaglutide maybe get okayed for type ones in the next couple of years. Anyway, I'm sorry, I got off track there. Okay, here's some half like, conspiracy theory stuff. Did you start using but I don't even know what I'm saying here. Did you start using less dielectric grease on the g7 than you did on the G six? Because I'm seeing something wonky when I take a shower.

Jake Leach 41:07
Oh, interesting. No, the, that's interesting. That's a person who's into the details on the on the ceiling system. The ceiling system for G seven is totally different than G six. So it doesn't use that those same components. So it you know, G seven is, you know, from a waterproof perspective, you know, meets the same standards G six very waterproof. So when taking a shower, if they're seeing something wonky, the only thing I've seen is like really hot temperatures sometimes can make a little bobble in the signal, but it depends on what they're seeing. I don't know what what they're experiencing. But know it the waterproofness is great. You can swim with it and go underwater, reconstruct koozie Yeah, all good.

Scott Benner 41:49
I mean, Arden's blood sugar jumps naturally, when she gets in the shower, and some people's fall, I didn't know if maybe they're just, I don't know, seeing that I couldn't tell. But I was like, well, some engineer, that anyway, I thought I would could help quell your internet rumors. So there was one for that. I know this is never going to end, but you guys made a change to the adhesive. I think it works terrific. I'm not seeing any trouble with art. And she is wearing the little over patch that she sent. If I can give a personal bit of feedback, it would be nice if they were a little stiffer, because I end up sticking them to themselves a lot. I agree. I totally agree. IVs, big X square fingers. And my hands are huge and are just like leave it alone. Like you're gonna, it's stuck to itself. And I'm like, I know, I'm sorry. But anyway, that's that. Some people are saying, could the patch be larger that comes with a Dexcom? Is that something you're evaluating? Are you happy with where it is?

Jake Leach 42:42
No, no, we're evaluating I mean, we're always looking at new patch technologies. And there's quite a bit going on in that space with the different patch manufacturers. And so now we're always looking at making it you're better with the balance of ensuring it doesn't cause skin reactions, right? We we made a number of enhancements to G six over time that reduced some people have sensitivities to medical grade adhesive. And so we made a bunch of changes over time to G six to improve that those changes are you know, that learning went into G seven. And so but now we're still we're always looking at how do you improve it, that it's I think it's gonna be less about the size of the patch and more about this specific materials that are in there. But yeah, you'll you'll see enhancements come out over time on G seven for the patch.

Scott Benner 43:29
Art was it removed? The countdown on the on the caregivers side? But that's not different. Is it? Because I don't

Jake Leach 43:38
know. I don't think so. I don't I don't even on the follow side.

Scott Benner 43:42
Yeah. Let's see. Is there any plans to add a time since updated? clock on the g7? Mobile App? Okay, so

Jake Leach 43:49
Oh, I don't know. Yeah, no, I get it to get because we have that on the follow up, right? I don't think so. But I can I can double check and look,

Scott Benner 43:59
in that same vein, a number of people asked if why they can't ping the sensor. Why do they have to wait the full five minutes if they I think it's a lot of parents who are like, stand here for two minutes until I see what this does. And then you can like go away? Is there? I mean,

Jake Leach 44:16
yeah, the current design community, it only communicates every five minutes. So depending on where you catch it, right, it could be as short as a minute. But it's basically five minutes in between the communication cycles. But that's another thing that we're looking at in terms of for reliability, and ensuring you get the connection back faster. Enhance hands there.

Scott Benner 44:38
A lot of people are asking for a lot of the management stuff that you can see in your your app if you're the user, but on the on the follow side, time to expiration like things that really helped with management. And I know we've talked about the app a number of times it feels like you're working towards it, but we are

Jake Leach 44:56
you know, we spent a lot of effort the sovereignty He was super focused on getting g7 out and getting it internationalized across all these different countries. And we're still continuing to launch new countries around the globe with g7. But we also, we built a lot of software capacity to do that. And we also do one, the Dexcom, one product that's available outside the US same thing, added a bunch more software resources to drive software development forward. And the teams do kind of inter interchange, we don't use, it's not like there's a dedicated g7 team that's totally separate from Dexcom. One, there's a lot of common software. And so follow, I'm excited to bring follow into that fold and start making more enhancements to follow. Because it's, you know, it's time we do that we haven't we've ensured it stayed compatible and made some small changes, but it's time to make some of those changes that users are asking for because it follows a really important part of the system. And we need to put more attention into it. Yeah.

Scott Benner 45:53
I'm glad to hear you say that. I have a question I hope doesn't seem difficult, but I feel like I've known you for long enough. When do you hit enough scale that you can bring the price down? For for cash options? Like did you know what I mean? Like the idea in business like we can sell a few expensive things? Or a lot of inexpensive things? Like is there a tipping point where that can happen? So that so that instead of you and I having this conversation, and a lot of nice, middle class people hearing it like when can everybody use one of these that needs it?

Jake Leach 46:26
Yeah, I think so. You know, the price of CGM has come down quite a bit over the over the period of time that it's been available. The average selling price of CGM is quite a bit less than it was even four years ago. But there's still more room to go and I there, there is a time period where we're getting to a point where it's, it's very affordable for people to access it. Now, different products, maybe a different price points based on functionality. You know, you think about it from the perspective of like an automated some delivery system, and all of the functionality that's required there, that may be a different price point than someone you know, who doesn't use automated insulin, they're not using insulin, they don't have the alerts alarms, not using ShareFile. So I mean, there's there's different feature sets for users. But you know, I think we're it's one of our focuses is always to innovate on the cost side of the product. G seven was a big step for us, in terms of, you know, continuing to reduce the cost, it takes us to manufacture now we're not there, because your G seven volumes aren't, you know, completely, it's not the whole base hasn't shifted over and all the new customers that are coming in, but as the g7, volume ramps, and we just, you know, our factory in Malaysia just just started up at the beginning of the month of June. And so we're really excited to have that factory now running. And that's a big part of our cost to serve and being able to reduce the overall cost of the product.

Scott Benner 47:50
Is it possible that the business on the non insulin using type two side could help to buoy the other side at some point,

Jake Leach 47:57
volume volume, in all cases helps, right. And there are a lot of common components to the systems. And so you know what the nice thing about having, you know, kind of the product built around a particular hardware platform like G seven is that as scale continues to grow, and your volumes grow, you can take advantage of that. And so absolutely the more volumes that we grow in all the different patient segments, the better. Okay,

Scott Benner 48:19
here's my last question. And it's very Nishi. I think four people are going to understand it when I say it. Is John Welsh, still with the company? And can I interview him again, because people loved him.

Jake Leach 48:29
John Wells has tested absolutely still with the company. He actually is one of our main medical writers and has published a lot of recent data. Actually, that's some of the data I was talking about. With the type two users that aren't on insulin, some of the outcome data we saw there. That was all, John was one of the authors. So yeah, he still is

Scott Benner 48:48
he's maybe without a doubt in the top five. I don't know if you call it gi here. Dorcy diabetes, people who have been on people love the I mean, we talked at length about standard deviation and things that I just think most people might not even understand or care about. And man, people loved it. It was. So I'm glad to hear that I'm gonna reach back out and get them on the show again. Which is on the lock screen that's still there for g7

Jake Leach 49:13
Yeah, I believe so. Yeah, we actually just yeah, we just made a bunch of updates for the widget in the last version. So if if it wasn't that I'm assuming it's there now. Okay, great. Jake,

Scott Benner 49:23
I appreciate this very much. And I am cutting it two minutes short, because I'm going to tell you this very silly story. So I'm gonna say goodbye to you. I'm gonna hit stop. So you know, you're not being recorded anymore. I appreciate you being here.

Jake Leach 49:31
Awesome. Pleasure.

Scott Benner 49:37
A huge thanks to Jake leech and Dexcom for coming on the show and answering all of your questions. And thanks to you guys, of course, for sending in those questions. Check out us med at us med.com forward slash juicebox or call 888721151 for better service and better care. That's what you're gonna get hate us med. The podcast was is also sponsored today by the contour next gen blood glucose meter. And I'd like to remind you to head over to contour next one.com forward slash juice box to learn more, and maybe buy yourself one. If you're looking for community around diabetes, please check out the private Facebook group Juicebox Podcast type one diabetes, if you have type one, type two pre diabetes, gestational, everyone's welcome. It's a private group with over 40,000 members. There's a conversation happening there right now that you would be interested in. Or let me say this, maybe you'd have something to add to that conversation. Maybe you just want to work doesn't matter to us. Come on over. Everyone's welcome. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#953 Weight Loss Diary: Four

Scott is taking Wegovy for weight loss. This is diary number four.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 953 of the Juicebox Podcast

Hey everybody, I'm back with my next week govi diary. This one gets you through the 1.7 milligrams, all four pens, and you'll hear what happened to me along the way. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Today I interviewed a girl who has type one diabetes and is taking ozempic. That's very interesting. And we'll get that one out as soon as we can for you. All you we go V diary fans might really love that one. But for now, if you're looking to save, you can save with my link, drink a G one.com forward slash juice box you'll get a free year's supply of vitamin D and five free travel packs when you start drinking at one with my link and you can save 10% On your first month of therapy@betterhelp.com forward slash juicebox get yourself some help get better help. This episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy Earth makes a lot of my favorite things. I'm wearing a hoodie right now from cozy earth that I can't describe you how soft and just comfortable it is. I'm never hot in it. I've never cold it. It feels like it feels like someone made it just for me. Cozy earth.com use the offer code juicebox at checkout to save 35% on your entire order. Everything you put in $1,000 worth of stuff you save 35% You put in $100 worth of stuff you save 35% You save 35% with the offer code juicebox at cozy earth.com Hey everybody, its Scott. I'm back. Tuesday, June 20. I'm about to do my first injection of 1.7

Sorry

my mom isn't doing well. And I had to fly cross country unexpectedly the other day and didn't have any time to prepare. I you know food, that kind of stuff. Just bought tickets left the next morning. I got stuck in an airport for seven hours because of a mechanical issue and weather. And it was tougher than usual because there's just not a lot of food that you know, I was inclined to say that there's not a lot of food that I can eat. But I don't that's not what I mean. There's not a lot of food that I want to eat at this point. I am I am seeing a connection between things that I would have eaten in the past even though it wasn't overeating them that I just look at now and think that's not worth getting in the way of what's happening here for me. And that might be the best way to put it. I am this morning 22nd This morning Yeah, this morning I am 23.4 pounds lighter than I was when this all began on March 28. That's the day I did my first injection and made the first the first diary entry. So I am 23.4 pounds lighter. My BMI is 3.5 points lower. My body fat. Wow. Almost six points lower. I hydration like my body water measure continues to go up started at 47 Back then in March. It's 50.8 now. I mean there's a lot more here. I'll go over them with you in a couple of weeks but my fat free bodyweight is dry. hoping my subcutaneous fat is dropping, that's gone from 30 to 20. So 25.7 from 30 to 25.7. This role fat is staying pretty much the same. Muscle mass is holding. bone mass is holding protein holding. My metabolic age has not fallen yet. Alright, I'm trying. I'm going to be 52. And my metabolic age is still going to be 57. But it started at 58. And that's not nothing. Anyway, back to the food. I found myself in a restaurant one time. And I looked at the menu. And I thought, I don't see anything here. I mean, genuinely, I don't see anything on this menu. That a person wanting to stay in a caloric deficit and trying to lose weight and feel better and etc, would buy. I ended up getting a side salad. The Greens weren't terrific. I pick through them the best I could. And I just thought, well, I'll eat later when I have better access to food. I was able to do that because of course the week OB keeps me from feeling hungry, both like physically in my stomach and I guess mentally in my head. So that's a really big deal. I haven't been Dizzy like you know, I used to get like, Oh, I forgot to eat. I've been dizzy. That hasn't happened. I know how to stay in front of that now. And as soon as I got back from the trip, I went right back to my breakfast couple of eggs in a wrap. I put a couple shrimp with it this morning. I think the other day I put something else with it. lunch I had more of the shrimp with some rice. Had a nice turkey sandwich. Rye bread. Real turkey. Not a lot on it after that. In the airport in Chicago. I had chicken noodle soup that was very good. And a half a turkey sandwich. There was too much bread. There was too much cheese. I just ate what I wanted. Very comfortable. And my thinking about food is shifting, like 1,000,000% Anyway, I am moving up now to 1.7 milligrams. This is the first injection of 1.7. And I guess I'll do it now. And then if I don't have anything else to say I'll see you next week. All right, here we go. That was the cap. This is me standing up. And here looks good.

Okay, what else? Oh, the full feeling the actual physical full feeling in the I'm gonna say for a month or so. There were times when I would eat. And it almost I know this wasn't the case. Right? But it felt like the food was like stopping halfway down. You're like, you know, your esophagus. And it's not the case it was the feeling you had that's been better. Better meaning I don't feel it as often. Reflux that I had earlier on, I can't decide if it's, well, no, what you know what I can decide. I was gonna say that I'm not sure if I'm just eating earlier, and therefore, in the day and therefore I'm not experiencing it at night, but I don't think so. I think my body's kind of getting accustomed to the, to the week. Ovie not feeling that as often. I mean, as far as like thinking about food, that doesn't really happen, but it hasn't stopped me from having like, treat kind of stuff once in a while. I had a little chocolate ice cream yesterday. Not a lot, a tiny bit. I've had a couple of gummy bears. They were very good the other day, but I didn't eat like, you know, I didn't snack on them. I had like, I was like, oh, gummy bear. I took a couple of them. And that was it. Still I'm getting my sweet fixes from like bananas and oranges. I do have chocolate like a good quality chocolate in the form of like these little chips, and I'll have a couple once in a while. I had a cookie the other day was good. A small one. It was homemade, but it was good. But not like amazing. I will say that. Any of like the, you know, like the, I don't know sunshine and rainbows feeling that you might get from food. It's not like that anymore. I can't tell if that's the medication or just my excitement about losing weight and feeling better. And that's the other thing too. Bye My face is looking different. My stomach and my, you know, it's very, it's on a very similar plane of existence as my chest, which is pretty exciting. I can see my body changing. My body is doing a good job of not hanging, you know what I mean? Like it's coming together. It's been easier on my knees and my feet, you know, losing weight. I definitely feel better overall. It's been great so far. So, anyway, I'm gonna go V, and I'll be back next week

I'm gonna sound like a guy with a podcast for a second, which I try not to. But there's no way around it. Cozy Earth is a sponsor of the podcast. They've been sponsoring the show all year. And they just thank you cozy Earth bought ads for the rest of the year, which means you guys must be liking cozy Earth as well. So for that, let me just first say thank you to all of you listening. Now. What is cozy earth? Well, they sell bedding, bath, sleep, clothing, soft things. What's the best way I can say comfortable things. I am using cozy Earth sheets on my bed. They're made with viscose bamboo. And they are incredibly soft and comfortable. They wash well, they hold up great. They are a joy to climb into. I'm just going to tell you cozy Earth sent me those sheets when I started doing the ads so that I could try honestly they sent them to me before I started doing the ads. I said I gotta sleep on the sheets. Before I talked about the sheets. They sent me the sheets, it was a no brainer to say yes to those ads. Not because I got a free pair of sheets. Because I've now bought things from cozy Earth with my own personal money. I've bought more pillowcases. I've bought towels I've bought a lot and the towels. Alright, you want to hear about my towels. It's a crazy thing to say. I have cozy Earth waffle bath towels. On one side they have this kind of waffle pattern I use that when I first got the shower kind of absorbs a lot of the water you know I'm saying and then I flip it around to the super soft side. And I do the rest of the town that way my bits and pieces love the super soft side. I think it's possible your bits and pieces would too cozy earth.com. Now at checkout, you use the offer code juicebox to save 35% off of your entire order. And a little birdie told me that that number is gonna go up very soon from 35% to a larger percentage. Stop by and check it out. See if that's happened yet. Cozy earth.com All right. I've talked about my bath towels. They're amazing. I've talked about my sweatshirt, the pullover. swear to you I love it. But the joggers might be my absolute favorites. And Arden's wearing a pair of lounge pants now that she says are terrific. She loves the way they look on her how they feel how they are when she's sleeping with them. Listen, there's so much over there. For ladies, for men for bathing, for sleeping. Go check it out on you. Cozy earth.com use the offer code juice box at checkout. And I'm gonna take this little bit at the end here to say thank you to cozy Earth. And thank you to everyone listening. At the beginning of the year cozier took a shot with me bought some ads, and you guys, you went and checked them out and made some purchases. And now they're here for the rest of the year supporting the podcast. So I'm just gonna say it very plainly when you use my offer code juice box at checkout. The people at cozy Earth buy more ads, and you get more content. And all kinds of great things happen. If you love being comfortable. If you love pampering yourself, if you love your bits and pieces smiling back at you. That's a weird thought. Don't think about that. Go to cozy earth.com buy some stuff. use the offer code juice box at checkout. When you use the links in the show notes of your podcast player for all the other advertisers. You're also supporting the podcast. Thank you so much. Let's get back to my week. Ovie diary

Hey kids, I'm back. It's June 27. And I've had my first odd week on we go we back on the 20th I weighed 210 pounds. And yeah, on the 20th next day, I went Get a little more 210.6. Now the 20th was when I injected the first dose of 1.7 milligrams. But okay, next day two Oh 9.6 And I got back at two Oh, 9.2 The following day, I was like this is happening 1.7 is going to be the way to go. But then two Oh 8.4 I know, right? It's happening. I'm doing it. I'm gonna be under 200 No time. Next day two or 9.4 Next day 210. And today, I'm 210. So what happened? Did Scott find a way to eat? No, I think the larger dose might have brought back some of the earlier side effects. So when you first started, when I first started using the medication, you have this sort of like, overly full feeling. And almost, I don't know one other way to explain it other than it feels like if your stomach and the tube between your stomach and your mouth was all one piece, it feels like the food is like in the tube. It's not like a horrible feeling. For me, it's not a great feeling. But it's a very full feeling. Almost like a little burpee enemy. But bigger problem this week was I missed the day of the magnesium oxide, which seemed to lead to some slowing of the process, you understand, I'm saying there was no poopy. And I'm constipated the last couple of days. So I don't think that the weight is indicative of a weight gain. I think it's indicative of the constipation. And I am just going to trust the process and assume that my body will adjust to the 1.7. And keep going. Anyway, you should have seen me to await I was super excited for the number that I thought oh, I'm going to be under 200 soon. But had a I've had two interesting experiences this week that I'll share with you before I inject this. They're brief. The first one was I was with a bunch of people who I don't think completely understood how this all works. And they were asking questions, and I was answering the questions. And the person says to me, but I mean, you haven't used medicine to do it. I was like, Yeah, I don't care. I'm like, I'm like, what? What's your point? Like, I'm 20 I mean, what's the, um, 210 today, so 23rd I am 23 and a half pounds lighter than I was when I started this. And it's a significant improvement for my life. Not just like how I look, right, which is the other thing I want to tell you about, but for just how I feel I feel so much better. And I'm not, I don't know, I don't feel like I'm a slave to like food I can eat when I want to. I don't have big portions anymore. I don't have that overly like a feeling like, like I feel full because of the medication. But I don't feel like I overeat. I haven't felt like that a long time. Anyway, point is, I if people don't understand, I'm happy to explain it through them. But I'm not going to sit there and apologize to them because I couldn't figure out a way to do this on my own. Like I'm 51 almost 52 years old. This is my last shot. Like you know, I don't know a lot of people in their 60s who are losing weight like through diet and exercise you know? So anyway excuse me while I clear my throat I'm gonna get a drink so anyway, I was happy to share that with them. I don't know if they understood or not. And I also heard a lot of like, what about your liver? Like, it was the weirdest thing like I guess at some point somebody's medicine hurt their liver in their life and so they just assumed all medications like can't use medicine and or hurt your liver and I'm like, Okay, it's injected not metab i know i We didn't want to go through it with them because it didn't seem like it was gonna go anywhere. But it was an interesting response nonetheless by the way, all from people who could use to learn to lose 25 pounds so and that's not me being judgey about them I'm telling you for health reasons these people all could stand to lose some weight. All right, now the last thing I want to tell you about before I inject this is the how I look part that's been my least focus the least of my focus so far. Like I definitely wanted to be healthier. I don't want to have a heart attack. I want to feel better. All those things. But I the last thing I thought it was like how do I look? I can tell you I dropped pant size like a waist size two sizes, which is been pretty crazy and the ones that I just bought at the new size. Luckily it's summer. I'm just getting shorts But they're starting to feel a little slippy, like they might fall. You know, I have a classic no but no hips guys like thing. So I'm gonna have to get a tighter one I think. But, and there's a massive difference in just like, my body size like the bulk of the mass of my body, right? I shouldn't have said massive because then I had to say mass again. But my around my chest around my background, my sides, my midsection, they all are smaller. I am shrinking. Like there's no doubt about that. But the excitement of it has gone now like, you know, like 23 pounds, like, Wow, it's amazing. Like the numbers seemed exciting. But then I look in the mirror and I go, Oh, yeah, I'm not done. Like I don't magically look better. It's, I look smaller. So anyway, that was a bit of a thing. Because I think in my mind, the visual and the number were tied together. And as the numbers falling, like don't get me wrong, like I'm getting smaller, but and my body is doing a good job of compensating like shrinking up. You know, that's that's happening pretty well. But obviously, there's going to be a lot of exercise in the future to tighten things. But I don't know like, I guess it was more visual like for the first time for me, it was visual. I looked in the mirror and I thought I don't look magically better. I don't know what I expected. But it finally struck me like, wherever I think I'm headed. I'm not there yet. Anyway, that was pretty much all my thoughts for this week. Second injection we go V 1.7 milligrams cap off. Hopefully I'll go v to the bathroom soon to do you think they named it that because of like that? Like it here we go. Here. It's gotta be here we go. Right here we go. Losing weight. Here we go. Feeling better. Blah, blah, blah. It's got to be with a little less belly to inject into. Here we go.

Hmm, little bit of pressure there for the 1.7 milligrams under the skin. Nothing bad. I wouldn't call it a pinch. A little pressure. All right. People, Scotty out talk to you next week. Hopefully I'll have a weight loss to share with you. I don't want to keep gaining weight, because if I do, that'll mean. It'll mean I have a giant bag of poo inside of me. That's not good. We don't want that. Alright, say, Hey, what's up everybody? It's Scott on July 4 2023. This is going to be a short one because I have to go to a picnic. It's Tuesday. So I'm injecting my third go of 1.7 milligrams of weego V. Here's what's going to happen. I'm going to inject I'll tell you a little bit about this week. I fire off an email to my physician and they send a refill for this step up to the pharmacy. Okay, I weighed 207.4 pounds. Yay. More importantly, this week was full of family visits. I don't know. I don't know how much I said on this these episodes, but my mom passed away recently. And so there are people here and we were at restaurants, you know having get togethers, things like that. My mom basically outlived everybody except her best friend who was on another coast so she couldn't make it. So it was just you know, get togethers, food, home cook things, I was no trouble to eat. You know, well during those events, even in restaurants, I did bake cookies for the little kids that were here and I had some cookies and still I lost weight to point you know, I lost weight I'm 207.4 pounds now today. honestly don't believe that without modern medicine. I would have gotten through the last two and a half weeks and weighed less. Like I don't think I would have weighed the same if this would have happened before we go V I'm sure I would have gained 10 pounds in the last two and a half weeks just from airplanes and crappy food and bad restaurants and stuff like that. So miracle modern medicine, right 207.4 pounds today I feel terrific. does not seem to be any end in sight for this which is fantastic. I did not stress eat. I did have some cookies. Because we bake some cookies for the kids and everything. And I didn't gain weight. I lost weight and I didn't eat them crazy. I had one I was like, that was good. And then I put it down. Last night, I picked one up, I took a bite of it. And I thought I don't want this, and I put it down. I have never in my life. Done that. That's pretty amazing. So, you know, while we're speaking about the miracles of modern medicine, my mom lived to just about 81 years old, Mr. 81st birthday by maybe a month and a half. She had a pacemaker for the last 20 years, she had was in heart failure, have been fighting off type two diabetes for five or six years, you know, had a major cancer problem, a huge surgery. In the end, her cancer did come back. But again, without modern medicine, I don't think my mom gets out of her 60s, and she misses my son's entire life and my daughter's entire life. She has other grandchildren, other weddings that she got to go to both my brother's weddings and all the conversations and the things she did in her private life that I don't know about. They're all due to advancements in, in modern medicine. So I'm gonna take advantage of this one and say, here we go v. And then I'll talk to you when I get back. Oh, that was a bummer. I lost weight, guys. That's what that's the takeaway. I lost weight, I feel better. And I have a perspective on this. That is long term, very macro. You know, I see this as a process. And it is not a process that I have become. I've never become frustrated with it. Like before, if like you lose weight, like, Oh, I lost eight pounds, you think I'll lose eight pounds again next week, then it doesn't happen? Well, this isn't gonna work. And you just kind of give it away. But with this little line on the scale, that scale app, it just keeps going down like a real slow ski slope. And I'm good to be on this ride. Thank you so much for listening. I might button this one up. I don't know. Actually, I'll hold on to it for one more my last injection of 1.7. And then I'll make this an episode and send it out to you. Have a good day. Oh, crap. I just injected my 1.7 but I bumped the button. So I didn't record so anyway. Click Click. That didn't hurt. Okay, everybody, I'm back. It is July 11. Sorry, my water bottle. Crunchy. It's July 11. Tomorrow is my 52nd birthday. So spending it with my kids and my wife taking a day off from I was gonna say taking a day off from making the podcast. But that's not true isn't let me say no, I'm gonna record early in the morning. And then I'm gonna spend the day with my kids and my wife. But first, I want to tell you about this week with big O V, which was weird. It was a weird week with we go V because I didn't lose as much weight as I have been, which is fine. But my weight was up and down. And it took me a couple of days to figure out what was going on. But I finally did. And I want to tell you how I got ahead of it. So up until now, I've just been going with my regular daily supplements. I drink athletic greens, as you know. But then I take magnesium oxide to make the poopy move. I take what just happened with the computer. My computer just after we're sorry, computers fine. Sorry about that. I make. Let's see, I take a probiotic and extra probiotic. I take two magnesium oxides a day. Vitamin D. I take zinc. I take ashwagandha I'm trying right now. But the magnesium oxide is really the focus of this conversation because it keeps me regular. Well, I started getting nauseous on this 1.7 The third injection a 1.7. And I kind of couldn't figure it out. So I want to talk about nausea. I don't want to talk about consuming food. Those are my two thoughts for this. This little chunk here. Took me a couple of days to realize it's not nausea in the classic sense. It's it's nausea, like I haven't gone to the bathroom. Like it didn't hit me right away. But like two or three days went by and I was like, I don't remember using the bathroom. And I was like, oh, then my stomach started feeling funny. And at first I'm like, Oh, I'm nauseous from weego V. And then I realized I think I might just be nauseous because I'm eating and nothing's escaping. You know what I mean? So on day three, I was like, I'm going to take fiber like something needs to happen. But then I had this panic I was like what if I put fiber in there and nothing comes out still. So you have that kind of unknown like is the medication keeping me from going to the bathroom? And what if I keep putting more stuff And I don't want to be in pain. You know, right now I'm just uncomfortable. So I did finally decide to take fiber, but instead of going with my one that I used to use all the time, which I have a fair amount of around the house, because sometimes that can, I don't know if you have to get on a schedule with and I went with something a little easier on my system. It's another fiber we have in the house called Sun fiber. It's that's just the brand name. Anyway, I took that. And the next morning, a lot of law. Here we go V again. So all that was better. But why, you know, what was I noticing beyond the nausea? I was gaining weight, like every day that went by that? I didn't, you know, go, my weight was going up. So I was back on I measured What's the last time I told you my weight? The fourth right the Fourth of July? Because who doesn't record a what go via episode on the Fourth of July besides me. So on that day, I was two Oh 7.8. I held that again the next day. And then not going to the bathroom started. And then by the eighth of July, I was two Oh 9.2 Not crazy. To a seven to eight like a pound and a half almost. I don't think it was all poopy. You know what I mean? I also started noticing that as I wasn't being regular, my body started retaining fluid again, which was crazy interesting. Anyway, get in the fiber, the sun fiber. And I've had it now for two days. I didn't even get on the scale for those two days. I was just like, let me just see what happens. So last time I weighed myself was on the eighth two Oh, 9.2. Today's the 11th. I've had the fiber for two days. I was to await point four. I had to

ignore that at one point. I was two Oh 7.8. Because it really is it's just it's eight ounces. Like bright. Like, it's not a big deal. But it is initially you got to stop your brain from saying oh no, you gained weight this week, like you went up a pound or a half a pound or point eight ounces or whatever. It's just all ridiculous. The way I tend to think about it instead is was on a good path. Hit a speed bump, figured out the speed bump back on the path again, that's all like I don't care, very long term goals. For this whole process. I have in the past I would think about weight loss like very, in the now like I started doing this, you know, knock off some water weight, I lost five pounds this week, the next week, if he didn't lose five more pounds, like Oh, it doesn't work, you know, like going backwards again. With this. I'm not worried. I'm tracking now for you guys. But I don't care. Like I'm thinking about a year from now, a year from now I know how much I want to weigh, you know, two Oh 8.4. Today, down from let's not forget where I started like 233 something. It's amazing. It's been like four months. But I'm I keep looking at myself in the mirror, I can't exactly tell where my best weight is going to be. But I am getting to the point now where I want to incorporate more exercise. But I can't believe this is happening because I'm old, I guess. But apparently I chipped a tiny little bone off in my big toe on my right foot, like this little tiny free floating bone, I got an x ray. And every once in a while it settles in that joint between my two bones and my big toe and searing pain. So I can't move around too much. I have a an appointment with a surgeon and a couple of days so they can take it out so and get moving again. I mean between the knee last year and the toe and like every time I tried to exercise, being old, gets in the way body's broken. But anyway, that's still the goal. I think once I start adding exercise to this, I think the weight is going to start dropping pretty quickly. But for now, we go we still works exactly the same way. Not hungry, feel full. That's that. But I have learned because we've had a couple of events like a picnic or my my mom's you know, celebration with my family. That kind of stuff. My son came home, I can't eat. Now, like I'm learning that I could I could keep eating and overeat. I'd feel full but I could do it. And I was like, I'm not doing it. I want you to understand. But in the beginning I thought oh, that fulfilling means I can't eat anything. But now I realized that it's a mix of you don't feel hungry in your head. You don't feel hungry in your stomach. It doesn't mean you can't put the food in your stomach. So you have to make a conscious decision to eat reasonable portions because if you just like kind of shut your brain off for a second and like go back to where you were before I could end up eating more food. Sorry. I see that which has been valuable understand. Alright, anyway, so food pooping covered my topics. I am to 8.4 this morning, which means I have lost a total of let's see a lot of weight 25 pounds I've lost 25 pounds. It's pretty crazy, right? We haven't gone over the trends. So I'll do that very quickly to a weight point for this morning on the 11th Looks like my BMI 30.9 It's almost as low as it's ever been. Body fat 29.5 My hydrations a little down over the last couple days. I'm assuming that's because I think I was retaining water with the constipation and now it's coming out. Skeletal muscle is holding steady. BMR steady, fat free body weight. Gs 147.4. Does that mean I'm carrying? I can't mean I'm carrying 60 pounds of fat. Jesus, am I That's ridiculous. I don't think I should weigh 140 pounds by subcutaneous fat 25.5. This role fat was down at 13. But jump back to 14. Muscle mass is steady actually increasing a little that's excellent bone mass steady. Protein steady, metabolic age still 57 Okay, that's fine. I'm gonna button up this episode for you. I appreciate you guys listening to this. This was a tougher week. It was hard to see the weight go up. It's only the second time it's happened in four months. But still, you know, you almost get spoiled. You're like I'm on a roll. This is working. I'm gonna lose two more pounds this week, two more pounds, two more pounds, like you know, and then I was like, Oh, I gained two pounds the middle of the week. You know, could frighten you a little bit. But I am undeterred. I have my 1.7 my last one. And the next step up I've already received from the pharmacies next week. I'm already ready. It's in the fridge and waiting for me. You know how this works. Yep, hop off the camp. Find a place to stick it. Let's go belly side. Click

Click, it's in some magnetite injection 1.7 We go V. Done. I gotta tell you, whoever came up with this drug. You're a genius. And I appreciate it. I love that you guys are listening to this very cool. I appreciate you keeping up with what's going on. I have some other people in my life using these meds now, people I know going to be able to kind of expand their stories a little bit. I've got a type two using ozempic. In my brother, my wife is using we go V for weight loss as well as she's fighting with what we think is long COVID Which is really crazy. But she's right up to where I am like she I think she's right around the 25 pound mark as well. It's very cool. We're feeling better, we look better. And I think that's important. Now I just get my little toe fixed. I can hop back on my bike again and see how quickly we can't make this the rest of this lifelong collection of fat go away. Thanks so much for listening. I'll be back very soon with another episode of The Juicebox Podcast

I got two thoughts here one cozy Earth use the offer code juicebox at checkout cozy earth.com save right now 35% off your entire order and here's my last thought Novo Nordisk. What are you doing? Buy some ads on these we go V things. You're crazy. I'm loving your govi let me tell people about it. I'm saying, man here. I'm representing fat man getting skinny.

That's all I got. I'll talk to you guys soon. I really do appreciate when you listen. If you've got type one, type two diabetes, go check out the private Facebook group Juicebox Podcast type one diabetes

#952 Type 1 and Down Syndrome

Johanna's daughter has type 1 diabetes and Down Syndrome.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 952 of the Juicebox Podcast.

Today on the podcast I'll be speaking with a mom of a 12 year old with type one diabetes and Down syndrome. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Or becoming bold with insulin a few quick things, join the Facebook group Juicebox Podcast type one diabetes to meet 40,000 other people who are living with diabetes. It's a private group. I think you're gonna love it. There's something there for everyone. Juicebox Podcast type one diabetes on Facebook doesn't matter what kind of diabetes you have. You're welcome in that group. Other quick stuff, save 35% off your entire order at cozy earth.com When you use the offer code juicebox get 10% off your first month of therapy@betterhelp.com forward slash juice box and to get five free travel packs and a year supply of vitamin D with your first order. Drink ag one.com forward slash juice box

this show is sponsored today by the glucagon that my daughter carries. G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox.

Johanna 1:45
My name is Joanna. I have three daughters, my oldest of which is 12. And she is the one who has type one diabetic. And I live in Canada.

Scott Benner 1:56
Okay, your 12 year olds a T one just for context. How old are your other kids?

Johanna 2:01
They are eight so have eight year old identical twins. A 12 year old

Scott Benner 2:05
did that? Um I don't know. I don't know what phrasing I was just about to use. But my brain was like Don't say it that way. Was that from IVF or luck?

Johanna 2:18
We did have helped. So we did actually IUI and Clomid to get pregnant with the twins. But they are identical twins are spontaneous. And so it was a surprise. We actually were pregnant with triplets at the beginning. So it looks like the third one was fraternal, but we'll never know passed away and then ended up with identical twins. However, I'm an identical twin myself. So there's no real data about whether identical twins run in families or not. Usually it's fraternal twins. But it's certainly possible. And that's just the way it turned out in our family. I'm an identical twin and I have identical twins.

Scott Benner 3:00
My neighbors have two sets of fraternal twins. Wow, that's interesting. So they had babies twice and ended up with four kids, which is the way I think of it. But you for one discount? Exactly. Yes. Six more responsibility. Yeah. Okay. So we're here to talk about your 12 year old obviously, yes, we're not going to use her name. So I'm saying that out loud. So everybody knows we're talking around that a little bit and so that we remind each other of the same thing. So how do you want to how do you want to refer to her as P? Okay.

Johanna 3:37
So, P has Down syndrome. So she was diagnosed at birth with Down syndrome. And people down syndrome tend to have a lot of autoimmune conditions. So even though she's been really healthy throughout her whole life, she has sort of developed autoimmune conditions along the way. So at one years old, she developed alopecia. So her all her hair fell out, and it hasn't really ever grown back. At four, she developed hypothyroidism. And so we've been treating her with Synthroid since then. And then she developed diabetes in January of 2022.

Scott Benner 4:11
Oh, that's so recently. Hey, The Hypothyroidism is that Hashimotos.

Johanna 4:17
They've never called it Hashimotos. But it is autoimmune. So we, we did see an endocrinologist. They ran the autoimmune panel. They said, yes, it's autoimmune, but they've never actually called it pescados. So

Scott Benner 4:30
unless I'm wrong, that's Hashimotos. Okay, so hey, well Google it later. Okay, so but the diabetes came up. Oh my gosh, like not even 10 months ago.

Johanna 4:43
Yeah, so we I feel like the triggering event was we went to we had a big family gathering at Christmas. My nephew was sick, picked it up. And so she got quite sick with it. Nothing. I mean, she we managed her at home, but she was on She was sick for two weeks. And then shortly after that, she started drinking lots of water. And so I had known what the what drinking lots of water meant. I knew it was a risk factor for diabetes. And eventually it went on long enough that I thought I like I need to look into this. So I called the pediatrician. He said, Yeah, we'll order bloodwork. So we did blood work on a Friday. He called me at home at night, that night and and said, You need to go to the hospital. Her blood sugar's really high. So we packed up, went to the hospital, and then we were diagnosed like, that was a Friday night, on Saturday. With diabetes.

Scott Benner 5:40
Yeah, it's not a hard and fast rule. But if your doctor calls you at night to tell you something. Bad sign Yeah, prepare yourself. It's like we cannot wait till morning. Not not a good. Not a good sign at all. No.

Johanna 5:54
So they tested us, we walked right in into the hospital into an intake room. They tested her blood sugar right there. And it read high. So I didn't actually knew I didn't know what that meant. At the time. I was like, Oh, that's weird. It's high. I didn't know what meant it. So high can't read it. And so they ended up getting they did the bloodwork. Her blood sugar was 36. A diagnosis, which is 648. They did the conversion for you. Thank you. And her agency was 13.8. So chi, but she was not in DKA. It was there just she just wasn't that sick. It was just the drink in the urination. Or the drinking in the urination that was happening at that point. But they did admit us. Because it was a weekend. None of the courses started until Monday. And then we got into the diabetes clinic right away on Monday.

Scott Benner 6:48
Wow. I wonder if we'll never know. I'm just like thinking out loud. But I wonder if the illness also had her blood sugar driven up as well? Because it's a short amount of time, right? It was

Johanna 7:00
Yeah. Yeah. But her the thirst really increased really quickly to a point where I just couldn't ignore it. Like, you know, for a day or two, I just thought I'd like the can't be diabetes can't be diabetes. And then after a day or two, and it continues, you're like, kids diabetes? Yeah.

Scott Benner 7:16
Did you have did you have, I hope not list in the back of your head of things that might happen to her as she got older.

Johanna 7:24
Yes. And that was definitely one of them. So I know of a couple of, of children in the Down Syndrome community that have type one diabetes, we don't have anyone in our community group that has it. But I know someone online whose son has a type one diabetes and celiac. And then I know of a couple other families through social media who have it. And so definitely, that was one of it. One of the things that I was desperately hoping that she would not get, but here we are.

Scott Benner 7:54
Yeah, wow. The twins have any issues at all.

Johanna 7:58
ADHD. So they all actually have ADHD. And so they had me to thank for that. And I was only diagnosed with ADHD, after all three of them were and, and then it finally occurred to me, oh, my gosh, they're just like me. And so I went through the diagnosis process with psychiatrist and sure enough, I have ADHD as

Scott Benner 8:19
well, how does that impact them and you?

Johanna 8:24
For the twins and myself, it's emotional regulation. And so for them and myself, we we just have tantrums far longer than is really typical for children. And so they're eight years old and regularly have tantrums. Where they just cannot, you know, control their emotions. And for when you look at size of the problem, it's really quite out of out of range for the size of the problem of what we're, Oh, I see what the denied request is,

Scott Benner 8:58
I want this soon. You wanted that spoon and four hours later, we're arguing about itself kind of thing.

Johanna 9:03
Something like that. Yeah. Mostly two denied requests. So can I go to the park? No. And then it's a massive meltdown. And, you know, for students and for children in grade four? Like, that's a pretty big reaction for Yeah, how does that know?

Scott Benner 9:16
How does that look in your life?

Johanna 9:18
For me? So I've had all kinds of issues with emotional regulation growing up, and I, by the time I was in my early 20s, I had a diagnosis of major depressive disorder. So what happens is when you don't treat emotional dysregulation, when you're young, it just turns into something else. So for me, it was anxiety and depression, which has stuck with me throughout my whole life. And so I'm on medication. Now. I have been for years and years, I do much better on the medication, and being on the medication helps control my ADHD symptoms.

Scott Benner 9:53
Well, you know what you need your kid with Down Syndrome and type one diabetes, right? That's perfect. Are you

Johanna 10:00
right? So actually having Kipper Down Syndrome has been sort of probably the most transformative thing experience of my life. So it was the very first thing in my life that a challenge and an issue that I have had that I had faced that I couldn't change. So if I, you know, had a job, I didn't like I could change it. If I didn't like what I was taking in school, I could change it. If I didn't like where I was living, I could move, you can't change Down syndrome, you cannot take chromosomes out with people. And so I had so much work to do on my thinking about disability and Down Syndrome and cognitive disabilities, that I was forced to take on when my daughter was born. And I did take it on, and I worked through it with a counselor, and then just, you know, by myself eventually, and it was very freeing. So it was very freeing to just be able to let go of my judgments of things all the time. And to really accept my daughter for who she was and where she was at and really celebrate every single milestone that she went through, for and without comparing her to other children. And so I did some work with mindfulness, mindfulness is when you, you sort of just you pay attention without judging what what you're seeing. So I could really pay attention to where she was at the milestone that she was working on, and then really celebrating when she got past it, or when she met the goal that she was working on. And I still do that to this day. And it really allows me to see her for her without comparing her to other children or her sisters. Or, you know, her peers in her classroom.

Scott Benner 11:45
Right. What seems like a wonderful gift actually.

Johanna 11:48
It really was. Yeah,

Scott Benner 11:51
yeah. Wow. Okay, so my last question before I move back to P is, are there other autoimmune issues in your family? Line?

Johanna 12:02
Yeah. So there's no, there's no type one diabetes? My grandmother had hypothyroidism. And I think she had I forget what it's called. But when you lack B vitamins, pernicious anemia. And that's it, as far as I know. So it was out of the ordinary Oh, my husband's side, they have lots of hypothyroidism and high blood pressure. I don't know if that's family has it.

Scott Benner 12:32
You just get it when you get it when you get your license

Johanna 12:35
breaks? No, they're polish. And so I think it's actually very, very common in the Polish community.

Scott Benner 12:42
Yeah, that's interesting. Okay, so I'd like to take a little time to understand what it's like to raise a child is it is Down syndrome, like, I don't know, the phrasing, like I want to say downs, but I don't know if that's okay. So,

Johanna 12:57
in North America, it's down. And so in Europe, they say downs, but in North America, it's Down Down syndrome. You can also refer to it as teach you one or Trisomy 21.

Scott Benner 13:14
For me, that's not known as fine. Yeah. Okay. Sit down. Okay. But Down syndrome is okay, as well. Oh, yeah. Got it. Okay. So is this something you know, in utero? Or do you learn at birth,

Johanna 13:32
it can be both. So we did do. So the triple screen at around 12 weeks, and our chances of Down syndrome are higher. So it was one in 17, which is about a 6% chance. And at that time, we just thought we'll just wait and see what happens at the 20 week ultrasound, see what we can see. Because oftentimes Down Syndrome comes with heart defects or other kinds of differences in utero. And so we thought we'll just deal with it when if we see something different. So we get to the 20 week ultrasound, everything's perfect. She measures perfect. She's good size, there's like absolutely no differences. So we really just, you know, push it to the back of our heads. This isn't happening. She's not gonna have Down syndrome or she's perfect. And so my Waterbrook early, around 36 weeks, we went in, had her she loved muscle tone when she was born. And they immediately suspected Down syndrome. So we just went through the whole diagnosis process. She needed a little bit of extra help when she was born with the eat six, eat, suck, swallow. And so she wasn't NICU for a couple of days and then was really stressed after that, where we went through genetics and then we got connected to something called the Down Syndrome clinic, what was in our area, and we started receiving therapies right away. So we've got PT, OT and speech therapy, which is really for eating at that time, and then connected to other families as well, who had children right around the same age as us. So we have, you know, four or five families that we're quite close with that have 12 year olds with Down syndrome now,

Scott Benner 15:16
right? Are you able to? I don't know if he can think back that far. But are you able to? You're able to absorb it when you're learning it? Or is there so much to do that? You go on autopilot and follow what you're told?

Johanna 15:38
That's hard to say. I mean, it's 12 years. Yeah. So there was a time when I just had to wait and let my baby be a baby. For the first couple months before I was ready to jump into the Down Syndrome clinic and start with the therapies. It was a hard time. Yeah, for us. But once once I got going, and once I realized, this is what I need to do for my child, to give her the best chance, then I just did it.

Scott Benner 16:12
I want to I want to ask, but I don't want to infer, but is that a? Is it a? Is it a feeling of being let down? Is that shock? Like? How does it? Like? Do you know what I mean? Like what's the core value when when something this unexpected happens?

Johanna 16:32
I think there's something different when you know, right from birth, that your child is disabled, and that their life is going to look very different from your life. And so I really had to work through that, and what it meant to me, and then what it meant to her experience in the world. And it took a while. But what I came to is that it's okay to have different experiences in the world. And that, just because her experience will be different than mine, it doesn't make it less valid. And it doesn't make it something sad or a tragedy, she can have value and worth and that her value and worth doesn't come from her intelligence, or her lack of disability,

Scott Benner 17:20
or the way you expect life to go. Or your expectation on it. So what is that experience? I'd like to break it down a little bit like what does that experience look like? As an infant? How does it How does it differ from what you saw with your twins,

Johanna 17:34
right? So everything was just slower. So it's a slower pace of meeting milestones. She had difficulty with feeding right right from the beginning. It took her longer to, you know, sit up, to crawl to walk. But you know, she was my first and so I just wanted her to get to reach those milestones, and to, you know, to beat the ideas of what it means to have Down syndrome and that you're always going to be developmentally delayed. And then when I had the twins and everything was so fast with them, I really could look back and and feel happy for the slowness of the pace of what happened with her. That, you know, it was okay for children to take their time. Like, when you look back on your child, your child's growing up, like that period of baby and toddler hood is so fast now that they're eight years old. And you know, it's like the majority of their life is going to be as adults, and as these, you know, amazing little independent beings. And so to have like a really slow period at the beginning. I think it's okay.

Scott Benner 18:46
Did it feel a little like you got to enjoy it more?

Johanna 18:50
I did, except yes and no. So I looking back, I enjoy looking back on it, but during the time that that I was still going through that intense period of adjustment, so that I probably didn't enjoy it as much as I could have had I had a little bit more perspective.

Scott Benner 19:05
Yeah, I would imagine. I I don't think this is obviously an apples to apples comparison. But I find myself I get I get upset with myself if I'm in a in a regular interaction with my family, and I don't look them in the face. Like you know, when you're doing something else and talking to somebody, I find in hindsight, I look back and I think you know that he's not gonna live here one day, and I and I had that conversation with him. I wasn't looking at him. It makes me I don't know, it makes me I try. I guess that's what people talk about being present maybe. But I just tried to, to remember that, like, we can stop and do this thing right now. Like, you know, the other day I had some work to do. It was for you guys. And I realized my son was downstairs watching a baseball game, and I just I just stopped what I was doing and went downstairs and watch the game. with him, and we talked and watch the game and stuff and, and I just thought like, I don't know, like this moment only it's only here one time, you know. So that's what I meant by like, enjoy it.

Johanna 20:12
You know? Yeah, it's time you don't get back.

Scott Benner 20:14
Yeah, it's I don't know you don't realize it till until you get older and they get older, usually. So okay, so. So that's her like in that kind of infant experience is that everything developmentally happens a little slower. But what happens when you get to the next leap? When you're four years old and you're expecting? You know, like most kids are getting ready to go to school and things like that. Is that thing happening for pee as well or?

Johanna 20:41
Yeah, yeah, so we have early intervention preschools here. And she did two years of an early intervention preschool, so half days, and then during that time, her sisters were born. And then half day kindergarten, and then regular school. And so we have a really, really wonderful school board that my daughter goes to, and it's fully inclusive. And so when you have full inclusive school boards, it means that they have more money to spend on EAS to help kids in their regular classroom. And so that may not work for some families that really works well for ours. And P has always had an EAA with her in the classroom. So from kindergarten up to grade seven, now, she has an EN in the school, or one of a couple of different EAS during the day.

Scott Benner 21:36
Education Assistant education assistant Yeah, yeah, I was guessing. But I wanted to be sure that's fine. Yeah.

Johanna 21:43
And so and that person helps her with adaptive curriculum that can help her with daily living tasks. So taking her to the bathroom and back, helping her open her lunch kit and whatnot, she can do that by herself now, but her fine motor skills are quite delayed, and so even been able to open her lunch kit or the packages by herself, she would need help, potentially. And so that person would do that for her, and then help her with her death score,

Scott Benner 22:12
because well, her I'm sorry, less

Johanna 22:15
adapted schoolwork. Okay, so her schoolwork looks a little bit different than her peers that she's working on a couple of years behind them. But she, which is fine. She's working at her level, and then she still gets exposure to the other ideas and the discussions that are happening in the classroom, which I think is to her benefit, whether she can express, you know, her understanding of those ideas or not.

Scott Benner 22:38
So when does it speaking come into play?

Johanna 22:43
She starts around between two and three, really talking. And before that, we did a lot of signing with her. And so she learned, you know, she had well over 100 signs that she knew and that we did with her, and that she brought with her to preschool. And so the signing was really a bridge to her talking. And then really helped with the articulation or understanding because her articulation is quite impacted in her speech. So you know, she could say more, or help, please. And from time to time, I still am in science now. And she will still find like sorry, on her chest if she sorry for something because she has a hard time saying it out loud. But it was really quite a nice bridge for all of us.

Scott Benner 23:31
Okay. All right. So your expectations are, you're trying to get her to what like, I mean, if I if I send my son off to high school, my expectation is he's gonna learn a bunch of stuff and either go to college or trade school or something like that, and then he's gonna leave here and ruin some other girl's life the way I ruined his mother's like, you know, like, that whole thing is gonna happen. Yeah, so, but what what are your expectations for pain and your goals,

Johanna 24:00
that's to gain as much independence as possible. So to be able to, you know, bring up a reading level, she's, she can read around a grade two, three level right now, which actually isn't terrible. So if we could bring that up to maybe grade four, or five before she leaves school, that would be amazing. I mean, that's the reading level of, you know, the lower, like the sun kind of, say, newspaper, if anyone reads newspapers anymore. So to bring up her reading level, to be able to do you know, a little bit of math and to bring up her independence level, so that she can reach as much independence as she can. As as a young adult, and you know, part of that independence is her diabetes management. And so we do have her involved in her diabetes management, so she has her own phone. She can look at her number on the phone and she can tell us if it's a good or bad number, so she knows that you know about eight is a bad number. And then below 3.9 is a bad number as well. And the rest of them are good numbers. And definitely those colors on the Dexcom app help, right?

Scott Benner 25:11
Well, I have an idea for you. Actually. I'm going to tell you in a second, but I want you to tell me, are you thumping your foot or tapping while you're thinking or is that coming from somewhere else in the house? Because I think you're making points and tapping something.

Johanna 25:24
Oh, I was tapping my hand. Yeah. Sorry. Sorry.

Scott Benner 25:27
I have to stop Jenny from doing it too, by the way. Okay. She gets it back. And I'm like, stop striking the desk. We're recording this. You've been doing this for years. So what I was going to tell you is that just over the weekend. When you have diabetes and use insulin, low blood sugar can happen when you don't expect it. G voc hypo Penn is a ready to use glucagon option that can treat very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to G voc glucagon.com. Forward slash juicebox. G voc shouldn't be used in patients with pheochromocytoma or insulinoma. Visit G voc glucagon.com/risk. Are you looking for the diabetes Pro Tip series the bold beginning series asks Gatan Jenny algorithm pumping mental wellness defining thyroid defining diabetes all of the series within the Juicebox Podcast Well, if you're looking for them, I can tell you where to find them. If you're in the private Facebook group, they're all listed in the featured tab of the group. Or you can go to juicebox podcast.com. And go up to the menu at the top. And you will find links to all of them, you'll get lists of the episodes that include the episode number, and you just have to go back into your player, find your episode, and you're on your way. You can also listen to Juicebox Podcast DICOM if you don't want to be bothered with all that player stuff, though, honestly, that is the best way to listen to a podcast. That's pretty much it. Everybody, I appreciate you listening. I'm gonna get you right back at Joanna, a lot of podcast left for you today. I hope you're enjoying it. I'll see you soon.

Just over the weekend, I had an interaction with a gentleman, I think his name is Kevin. And he invented something called glucose. And Jenny told me about Chase like, Hey, I gotta glucose. Have you ever tried this? And I was like, Jenny, I don't know what you're talking about. And she goes, Well, I heard about it in your group. And I was like, Oh, hold on a second, I do know what you're talking about. So it's this little kind of light. That's a, I'm holding my hands up, like maybe it's a softball size I'm imagining and, and it through your Dexcom. I'm assuming she has Dexcom he has that right through your Dexcom credentials, you log into it, it goes on Wi Fi, and you assign colors to number ranges. And it just changes slowly. As you and I was thinking maybe that would be that might be great for her actually. You know, it definitely could be Yeah, just as you were describing, like we because you've taught her like, you're you're basically teaching her ranges by showing her like here, come to me, I'm assuming if this number is in the space, is that how you've set it up with her?

Johanna 28:26
I'm just more we have her check regularly, and then tell us what the number is and tell if it's good or bad. Okay, and so if it is, I mean, we know when it's bad because the alarm goes off. And she knows what the alarm means.

Scott Benner 28:38
But you're also trying to teach her for I mean, yeah, I just wanna I hate to say this, but like, is everything in your life the focus of when I die? Because that's how it would feel to me, like, how was this gonna work when I'm not here anymore? Would be every one of my concerns. I feel like,

Johanna 28:52
yeah. I mean, no, that's not the focus of my life.

Scott Benner 28:56
I might have overstated that, but you don't I mean, like, it's got to be the back your head on some things, right?

Johanna 29:01
Yeah. Yeah. So I mean, I can't tell the future. But people with Down syndrome tend to not live as long as you know, the typical population. And so, you know, my hope is, is that she has a really happy life until it ends and that I'm still here. And, you know, if not, her sisters will be here. And we live in a place where she would receive funding for like a staff member to live with her. Or she could live in a group setting with staff. So I know that she will be taken care of once we're gone. It's just how that looks that we don't know.

Scott Benner 29:39
So I'm looking here is the is the is the average age for a person with Down 47. Is that right? Yeah, yeah, that sounds right. What what is the what's the physical thing that causes that Do you know?

Johanna 29:56
Well, so it's hard to say because really It's only people with Down Syndrome have only been treated well, for the last 30 or 40 years. And so, you know, oftentimes before that families were told to put their children in institutions where they were mistreated terribly, or their medical concerns were not treated ethically, or the way that you would treat a typical person. And so even in 1980, there was a case where a baby was denied. A newborn was denied medical treatment on the recommendation of the doctor. And the parents took that recommendation. They went, I think, to the Supreme Court, and they allowed the baby to die. So in today's day, that would never happen. But there was a lot of medical ableism against children with Down syndrome. And people with Down syndrome. They wouldn't treat the hypothyroidism they wouldn't treat birth defects like the heart conditions, and then they were allowed to die

Scott Benner 30:59
or even like you're describing like, like not a not a natural desire to eat like those those physical functions like sucking and like that stuff, too. Oh, that's crazy. Hey, sit on your hands for me. Pick up your pick up your thighs and stick your hands on it. Okay, tap on your thigh while we're doing it, it's fine. You know, you just use the word that I'm a little aware of. Medical. I'll be using our bliss. Oh, ableism ableism. Sorry, I see that word. And I every time I see it, I'm like, I look it up. And I'm trying to make sure I remember but discrimination in favor of able bodied people.

Johanna 31:41
Or non disabled people? What

Scott Benner 31:42
does that? What does that look like in like real world? Like function? Like how can i How could that happen?

Johanna 31:51
So a friend of mine went to the doctor because her daughter's her daughter is Down Down Syndrome her I was turning in. And so when regular kids have their eye turn in, they see an ophthalmologist, they get treatment for it, you can have surgery for it. And the first doctor that they went to, well, we don't even know she's using that idol to see because she has Down syndrome.

Scott Benner 32:17
You probably need your I forget it. Oh, I get it. Okay. All right. All right. All right. So I'm sorry, how does that look in, in the zeitgeist in when people do something that's not so material to you, like a doctor who can actually say, No, I'm not going to give you care? Because you have Down syndrome, and you're probably not using your right. Like, how does that work with just? Do you know what I'm saying? Like, where does that term? I'm not asking this question, right? Hold on a second. I didn't sleep much less like I have a daughter with diabetes. So give me a second. How could I do something insensitive as a person who doesn't have actual agency over your daughter? Like, what would that look like? You know what I mean? Like, what do people do around you that falls into that category? Is it? Is that possible?

Johanna 33:16
Um, no, but like, for me, personally, I while I would always, I would always challenge someone who chose, you know, said I wasn't I'm not going to cheat them because of Down syndrome. Or I'm only going to look at this because yeah, I don't see that happening around me personally.

Scott Benner 33:36
Okay, so I'm now remembering the context I saw somebody talking about they had a spouse who was having border like they, I think they thought of, maybe they had borderline personality disorder. And they started talking about the spouses. I don't know overall behavior, and set and attaching it to the idea of the of the borderline personality disorder, and a third person came into the conversation and said, Be careful not to be and they use this word, which Why can I not pronounce it? Say it again? For me? Medical ableism No, no. Why can't I say A B? L e is what is that's ableism ableism. Why am I not saying oh, it's the way it's split up in front of me. Okay, so somebody came in and said, Hey, make sure not to be like, you know, ableist because, and then I couldn't figure out what they were saying. And so I guess what they were saying was don't just blindly attribute the behavior to the disorder. Is that what a disability Do you think that's what I as I take you way down the path, it has nothing to do with your story, but I just You caught me thinking about it and you caught me on four hours sleep so so I might, I might have ADHD at this point in the morning. The two of us together are going to be terrific. Okay, all right, well,

Johanna 35:04
so, like a parallel example would be, you know, going in and, and saying, you know, sorry, P is doing this behavior, and someone says, oh, that's just Down syndrome, or you know, has a symptom or it's just down syndrome. without really looking into it. That's ablest.

Scott Benner 35:19
Okay, just disregarding other operating options, because you have this thing and just saying, Oh, it's definitely that. Okay. Yeah. Thank you. I appreciate that. I hope everyone listening appreciate it. But I appreciate it. I always like why you're like, Well, I never quite understand when that you that words being used in a No, I do so great. Okay, so and I caught you saying her names, and I already wrote it down. So I'll take it out for you. Don't worry. Okay, so you wanted to be I wanted to go back to something I have one last thought, right. You mentioned that she can even have trouble opening her lunch kit or opening her food is that still at 12 years old an issue?

Johanna 36:05
Not so much. So she has developed some skills around that. So she's a highly picky eater. I call her a restrict highly restrictive eater. There's only about four or five foods that she'll actually eat. And one of those is goldfish crackers. So we got the small the individual packs of them because we can you know how many carbs are in them. And she can't open them by herself with her fingers. But she can get a pair of scissors and cut open the top and dump it into a ball. So she has learned some coping skills around that about how to do things or how to get things done work around her. Her poor find muscle control.

Scott Benner 36:46
What are the other foods that she'll eat?

Johanna 36:49
Right now, hotdogs, cooks carrots, goldfish, and ice cream sandwiches?

Scott Benner 36:56
How do you? How do you get nutrition to her then does she can she take? Like, supplements? Or what do you do?

Johanna 37:05
I'd like to she would take a supplement, there are no children's vitamins that she will agree to eat, so she won't eat gummies and then she won't eat any of the fruity jewels. Cuz she doesn't like the taste of candy. Okay, so she, we have had, like, it's sorry, my hands again.

Scott Benner 37:23
I've been doing it your whole time, John, I just see you. Even when you thought you weren't doing it, you were doing it. I used to and by now we're all we're all on board with what's happening so I can feel I can feel your anger, your anger. You do a great job. Like just so you know. At the moment, I can see Joanna but she can't see me and she just she's answering her questions so thoroughly. But she sort of disappears a little bit in the back of her head while she's answering them. Like your head goes back a little you're looking up a little and you're just you're doing a terrific job. By the way, if I if I gotta if I gotta live with you tapping on something, don't worry, I will. And I don't want you to feel uncomfortable, although, so far you don't appear to be aware of it. So I don't think you're uncomfortable. But but don't don't think about it twice. Please. Except sit on your hands. Don't do it again. No, I'm teasing it. Okay. So there are only a few few foods actually. And so textures are a problem tastes are a problem. And it's not possible to negotiate with her.

Johanna 38:25
No, we just, we just cannot get her to eat foods that she will not eat and just she just will not do it. And if we get into any of those really negative battles where we're trying to force her to eat, it really just makes her mistrust of us in a food worse. And so we don't do it. We don't get into Excuse me. Battles about food. Okay, I'm

Scott Benner 38:50
sorry, I got coughing I know you do your let me ask you while you're taking care of that is have Have there been foods that she would eat that she will no longer eat?

Johanna 39:00
There happen. So we've had a it's been a really difficult year this year. So she was she was diagnosed with diabetes. Three months later, she got COVID She became dehydrated, she had a stroke. And after her stroke her her eating and drinking was impacted. And so she was fully to bed for quite a while while we worked on getting her eating and drinking skills back. And during that time, her food restrictions became worse. So she used to eat a variety of different proteins before so she didn't any different kind of protein. She'd eat, like pasta with meat sauce, and we could chop up sort of small vegetables in there. And now she won't eat many of those things since that time. And so it really has impacted her in her picky eating with the stroke and then having to go to the feeding tube. So she still has an NG tube. So she's a tube that goes through her nose and then We will be moving to a G tube. So that's a tube that is on her belly that connects right to her stomach, this is more of a permanent route that we're gonna have to take. And so we have to do that for two reasons. So one is because her picky eating is so much that she does not take in enough nutrients to sustain herself. So previously, she was she always took in enough nutrients and enough calories to, for her to learn and grow. And we had seen an eating clinic previously. And they said, Really, we just recommend that she get a multivitamin, if you can get one in her butt, but they didn't recommend supplement, or supplementing up until we had the stroke. And we had to. And then the second reason we need the feeding tube is because we we need to manage her fluid levels. And so they said that the dehydration is really what caused her stroke. And she's not taking in enough liquid now by mouth to manage your fluid levels. So we have to keep the to bed,

Scott Benner 41:03
did the stroke have any long term effects

Johanna 41:06
just with eating and drinking. So those are the big ones, it was a right sided stroke. And she did regain all of the her muscle control and function from the stroke eventually. So it came back within about three months. It was pretty much back to normal, except for the eating and drinking.

Scott Benner 41:25
How do you so what I'm hearing is that she has a choice and she doesn't like the choice. It's a no. But now but now we're talking about things that I assume she wouldn't agree to like a feeding tube or something like that. So how, how is it? How do you get to those things?

Johanna 41:41
It's really hard. And so we throat you know the whole experience, we perpetrate medical trauma on her. And so it started with the diabetes. So with the second day we had to hold her down to do finger pokes. And even to this day, she doesn't allow us to do finger pokes, we do toe pokes. That's the only thing that she will allow us to do. And even then it stopped setting for her. So we did get on the CGM. Within three days of her being diagnosed with diabetes, they got us on a CGM right away so that we didn't have to poke her as much. But we were put on a lever to and with a lever to you're still supposed to poke to confirm those. And so we were poking her multiple times a day, depending on what the sensor was doing, which was terrible. Like it was really, it was not good. And it was causing her quite a bit of distress, which is why we did eventually move to the Dexcom which is significantly reduced the amount of pokes that we have to do for her. Yeah,

Scott Benner 42:47
even and then even the CGM honor. Like

Johanna 42:50
she's not bad with a CGM. She's okay with that. Just one poke. And then it's done.

Scott Benner 42:55
But it's not. It's not like a it's not a thing where you say to her, hey, you know, we're poking your toes and you hate that if we use this less toes, like do you? Can you go through that? You do?

Johanna 43:05
Yes. Yeah, definitely. Yeah, this is a we don't have to poke you as much.

Scott Benner 43:09
And she's she's got she'll be like, alright, yeah, yeah, so

Johanna 43:13
she's good with the CGM. She finds we are in a pump now. And so we did jumps through hoops to get the pump early. So we had the pump within three months of diagnosis, which is very unusual in our province. They asked you to wait a year, but I was really getting hold of our first appointment. So what do I have to do to get to, you know, to get the pump, I did all of the pre work that you had to do. I watched the, you know, the video that I need to watch. And then while we were hospitalized for the stroke, they agreed to put us on the pump while we were there, John,

Scott Benner 43:44
I don't know anybody who would have the heart to tell, you know, to something you said that would help your life be easier or your daughter's life easier. I'd be like, let that lady have what she wants. And but Yeah, no kidding. Yeah.

Johanna 43:55
So they really worked with me I was I was really happy with it. But still, she doesn't like the pope from the pump. And she gets she finds it really upsetting. Last week, we were going through a pump change, I taken it off, and we were just getting ready to put it on. And she said to me, you say sorry for the Poke mom, you say sorry for the Poke. And she said it over and over and maybe apologize to her over and over. And I did obviously because I don't like having to do things to my child that she is not okay with and then hurt her body. But we have to, right. So I have to, you know, create medical trauma for her she has to live through medical trauma, because this is the only way that we can manage your diabetes.

Scott Benner 44:36
Well, I you know, I have to say, I, I've been through that. I think a lot of people have been through that. But the difference for us is that it was going to stop at some point that my daughter was going to understand or you know, create an understanding for yourself. And I mean, you know, I think we've all chased our kids with a needle in our hand. But, you know, the idea that one day, this would become normal. We won't do this anymore. You're stuck in a? Yeah. I mean, now, yeah. For now, do you think it makes you make sure? So what do you do? Like, I'm assuming you go to her care team and the people that help her and say, look, here's one of her struggles. How do we get past this? Is it something they work on? Or is it just you just kind of hope?

Johanna 45:19
No. And it's not anything I brought to her care team, either. It's just something that we work through at home with her, and that it just takes longer for her to process and for her to develop understandings about things. And so you know, even the other day, it seems off topic, but it's not. She said to me, you know, I really miss my, I miss grandma, and I want her back. And grandma died five years ago. And Phoenix was, you know, seven when grandma died, but it still comes up for her. That is something that she's processing five years later. And of course, I'm still processing five years later, too. But that, you know, this understanding of grief and loss takes longer to work through. And I think that there is grief and loss with diabetes in terms of, you know, your understanding of what life was like before and what life is like now with diabetes.

Scott Benner 46:18
Wow, that's a powerful actually the that came up for like the Wow, okay. Or, I mean, it's been 45 minutes, and I, I stopped myself every 35 seconds from asking you if you're okay. You know, I'm fine. I assume you are, you wouldn't be talking to you about it, but it's still Mike, are you okay? Are you okay? Because, I mean, you live in a frozen hellscape. In Canada, I don't know exactly where I'm you know, whatever. But you say that,

Johanna 46:53
but we have had the nicest fall that in, you know, in like living memory. It is 2122 degrees every day for the last six weeks since summer ended? Which I know what's the conversion for that? 40 like 70 something.

Scott Benner 47:10
Okay. All right. Well, don't ruin my by ruin my misunderstanding of Canada, please. I just wanted to say do you run out in the snow often and scream into a pile of it? Like how do you like, like, when you when you have that thing? Where, you know, you feel like you're not just feel like but you are clearly creating medical trauma out of need? Like, do not like you don't look like you're drunk while I'm talking to you. I don't see. Oh, I don't see any heroin needles behind you. I don't know why, but like, what do you what do you do for yourself in that situation? Or do you not stop to think about that?

Johanna 47:49
I try not to stop to think about it. Like I just have to the only way passes through.

Scott Benner 47:55
Okay. I understand. I guess it makes the eight year olds ADHD seem like nothing, huh? No, no, no, no. So so then you said then that I'm kind of trying to lead to a question when you have a child who has this much need. And I want to understand like in a 24 hour period, how much time do you think you give to pee? How do you get to something else when other people have needs as well?

Johanna 48:22
Yeah, there's lots of downtime in between when we're doing diabetes tasks and not. And so there's lots of time to spend with the other two, we have a really nice bedtime routine that I spend time cuddling with the twins right before bed. So we do they each get 15 minutes, and then we switch. Then iPads are off or lights are off and then gets sorry, pee gets cuddled to sleep. And the other two go to sleep by themselves, because she doesn't pee doesn't get cut off time. Before lights are off. So it's just a nice balance. We do I will spend one on one time with with each of the twins, I'll take them out on an errand, or we will do mommy daughter dates. And I tend to do those with the twins and not with P because P does get a lot of our time and attention.

Scott Benner 49:14
Okay, is that what so this peanut get cuddle time because she doesn't do well with it or because you want the other kids to see that she doesn't get everything. I'm trying to figure out where your thoughts goes

Johanna 49:26
that she doesn't get it. She doesn't get everything. And she mostly likes just to be cuddled to sleep. She doesn't care if she gets the cuddle time before. Gotcha. Yeah, so it's just meeting each kid's needs in a way that works for them.

Scott Benner 49:41
I would take her cuddle by the way if you were around like a very empathetic lady. I think it would be nice speaking out keep that in mind. Yeah, well listen, my wife got sick on a business trip. I might be in the in the market for a wage earner around my age anytime now because she's coughing and holding her chest and I'm like, Oh, this is it. I told the kids already has like, you know, do you want me to try a blonde next time? Or what do you want to do? But my daughter, of course, if you heard her on the podcast doesn't trust Angular job blonde with. I don't know if you heard her say that. But she's like blonde ladies with real Angular faces. I don't trust them.

Johanna 50:25
I missed that part. But I did listen to both of her episodes. I really enjoyed them.

Scott Benner 50:29
Or maybe this is something she's only shared with me that I'm assuming she said on the podcast. Anyway, she, I'm glad you enjoyed them. i Wow. My next question was about your husband. He's a saint, or he's chained to something, what's going on?

Johanna 50:48
She's neither. So he's involved in in almost as much of the Tata diabetes and feeding tasks as I am. He, as I'd say, his management of her diabetes is equally as good as mine. And it took them a little while to get around to we really need to keep her blood sugar's quite low. And he's there now. And so he does a really good job of managing them in my absence, or when it's sort of his turn to do it. So we, we have some really great a onesies. So our a onesie at diagnosis was 13.82 months later was 8.0. And five months later is 5.1. Okay, yeah. That's amazing. It was amazing. Yeah, yeah. So one of the benefits of her being a picky eater, is that you really get to know the foods that she eats. Yeah. And I really know how to dose the foods and she eats. So we do a really good job of keeping her blood sugar's in range. And when they're not in range, it means that she's gotten up earlier than I have, and she started eating, or that her pumps gone, and that we need to replace the pump. Yep, so either of those two things.

Scott Benner 52:02
She doesn't do anything with any fat or protein that would drive up blood sugars later.

Johanna 52:07
She does. Yeah, so the hotdogs and the ice cream sandwiches, typically cause a spike later on. And then that's mostly at night. And so we really see between sort of nine and midnight, her blood sugar spikes, so I'm, I'm really trying to work with her Basal rate at that time. So I've just increased it the other night. And then it went up a little bit last night. So I corrected and I might try and increase tonight. It's hard, though, because sometimes she doesn't get the rise. And then that Basal rate is too high. So oftentimes, we just correct, but we're, I'm quite on it with the correcting. So we'll start at like seven correcting

Scott Benner 52:45
earlier, I was just teasing you because I assumed he would run away, but he sounds like a good guy. So

Johanna 52:50
no, he's a really good guy. You know, he, he adjusted much better than I did with her down syndrome diagnosis, and he was really a rock at that time. And his perspective was always like, she's fine. She's perfect. It'll be fine. Yeah, that was, you know, and

Scott Benner 53:07
I just assumed that every time you left to go to the store or something I think by that said, She's not coming back. Every time I say goodbye to you, it'd be like the last time I went by John, I love you. It's been great. I know you're not coming back.

Johanna 53:22
There's something about being a mom that there are you want to do that, right? Yeah, you just do it.

Scott Benner 53:27
Yeah, that's something it really is cool. So the diabetes stuff. You know, I'm learning that when people say they're on a pump, and don't say it's an omni pod, they're trying to save my feelings somehow, which is not necessary. But what

Johanna 53:39
knows? It is an AMI py. So she's on an heiress. And one of the things I disliked about it is that it's because it's the like that first iteration, where you have to use the buttons all the time, and it's not a touchscreen. And so I really feel like if we're going to move down the path of, of her creating, learning more independence with her diabetes, she has to be able to use the pump by herself and she can't with the

Scott Benner 54:08
arrows because the old PDM still,

Johanna 54:11
that's the only one that's funded with my potential program right now. That's fine. So it would be far too expensive to do it on our own.

Scott Benner 54:18
So I blame Canada. Yeah, for sure. Absolutely. Well, and is that another song in South Park? Sure. Is. Yeah, I just thought I didn't make those words. I've heard those before. So yeah, so I blame Canada so you would prefer to be on the dash or the five? Probably the dash.

Johanna 54:37
I, you know, I don't know about the five with the target blood blood sugar being sort of higher. I mean, what's amazing is that, you know, our our ability to manage her insulin and hurry when z is you know, at the level of the LP five or exceeded. And so I don't know. And I have considered looping. I'm not quite there yet with, you know, building the app myself, although we do have a Mac that I could build it on. And I'm just anyway, I'm still just mulling it over to see if that will work for us. It will work for us in terms of getting her overnight level really dialed in. But there's a lot of work on my part to get it up and running.

Scott Benner 55:28
That's exactly what I was hearing. I was like, when are you going to do that? Exactly. Right. Yeah, exactly. And learn a new system and everything else. Yeah, yeah,

Johanna 55:37
yeah. But I do think, you know, something to, that I would like to look at is, is the, you know, the new, even, you know, the Dexcom or the Opie five, how user friendly? Is it for people with disabilities? Like how user friendly? Would it be for someone who doesn't have fine, great fine motor control? Is there a way that it could be adapted, so that to make the screens really simple, or make the app really simple for someone with intellectual disability so that they could, you know, just, you know, put in their carbs? And, you know, press go and be able to do their own insulin?

Scott Benner 56:11
I have to tell you, I don't think the loop app would be friendly for her. No, yeah, that would be because there's a lot of like, fine. There's a lot of fine touching, even like changing. Like, as I'm thinking about it, like if you put in a Bolus for a meal and decide later, oh, I wish that I wish I would have told it. It was 35 carbs, not 30 carbs. Just touching that, like there's double tapping involved in to highlight things. And if that would be, that might be difficult, honestly. Yeah. Oh, son. I wonder if another glad. So no, no, you need somebody to design a simpler screening system for it.

Johanna 56:47
Exactly. Like I think that would be a great way. I would a great sort of side project for someone to take on.

Scott Benner 56:55
Yeah, even older people, it would be valuable there too. Yeah, yeah.

Johanna 57:00
Can we do an adopted app for people with disabilities?

Scott Benner 57:03
By the way, I had to close the browser in front of me, because now I look at the word ableism. And I think how the hell were you mispronouncing that, you idiot. I just kept looking at it thinking like, how did you? What were you doing? Oh, my goodness. All right. Your. Your you said you take medication for depression, anxiety? Yeah. Okay. And that's working for you? Oh, yeah. Yeah, I mean, because you're in a weird situation where you don't have the, you don't have the benefit of being able to like fall apart. And yet you're, you have a thing that if you were to have a crisis, it's not like something you could just like, willfully stop. So has that happened?

Johanna 57:56
Have I had periods of time that I have been unable to cope? Yes, for sure I have. And, you know, I'm in a really fortunate position, that I have quite a bit of sick leave that I could take from work, which I have done in the past. And, you know, all I really need is a doctor's note to do that. And then it kicks in, I still get paid. And then I go back when I'm feeling better after I work with my doctor. And so that's been really helpful. The fact that I've had that, as you know, as something I can do, where I can really focus on my family. So when P was had her stroke, by took a month off, and then went back after that, and everyone was really understanding. So I work in the education system. And really, there's a, you know, a belief that you really do need to focus on your family first, because that is what's important, and that the work will be there when you get back and it was

Scott Benner 58:55
Does your husband kind of like step it up then at that point?

Johanna 58:59
A little bit. Yeah. Yeah. He

Scott Benner 59:00
has a job I imagine too, right. So

Johanna 59:03
he does. Yeah, so we work opposite schedules. So I work during the day I get home, he goes to work and works in the evening. Okay, so we have some crossover on the weekend. But we do work in some ways. It's like passing ships in the night.

Scott Benner 59:17
Is that something you set up because of P situation?

Johanna 59:21
No, not necessarily for p but for the twins as well. And not and not wanting to pay for childcare? Because there's two of them. So it's more expensive. Yeah. And so we the Pete, the twins have never been in childcare they've never had before and aftercare. We have had a long term aide that works with our family who's been incredible. She started with us when the twins were like three or four months old. And she's been with us ever since. And they're eight now. So we do have in home support. And it's for everybody. It's not just for Pete, that she spends a lot of time with the twins, working with them as well.

Scott Benner 1:00:00
You know, you've highlighted something today that I want to, like, just shine a light on for a little longer. I was interviewing somebody recently, who was having a lot of anxiety around keeping their kids blood sugar kind of perfect. And I said, Well, I mean, that's not what we do. And I started talking about art and going to college and the food changing and how that's impacted her blood sugar's and she's like, well, you're okay with her blood sugar being, you know, when she just said a number. And I was like, I mean, I'm not okay with it. But that's the situation. And, and the sooner you I don't know what it is, I don't know if it's an expectation of perfection that we have, or if that's just people's goal for everything to be beautiful, and easy and well funded. And, you know, everything right, there should be bird singing and music playing wherever I walk. And once you can let go of that, and not do what you were talking about earlier, like, not judge a person against another person or a person against the situation. Excuse me, everything just gets so much better. And, and, and I think what she was saying to me was, but a higher blood sugar could cause problems. And I said, Well, yeah, that's, that's true. But you have diabetes, like, you didn't get the same, you didn't get the same role that other people get, you know what I mean? And, and also not for nothing, but how many things in life are damaging you hurting you are setting you up for some sort of a problem in the future that you're unaware of, that you ignore to or that you're aware of, and you ignore one or the other. So I don't know that a 140 blood sugar after a meal is any different than somebody I see walking, I'm thinking of a person I know right now must drink six Coca Cola a day. But, you know, but doesn't have diet doesn't have diabetes, so they don't think anything of it. And I don't know that there's a difference, if that makes sense. You know what I mean? And and you've been able to? And I know, you said it very simply like, well, this is what had to happen. Right? Like I had to see the world this way, which I think you're right. I think that is what you had to do. But it doesn't mean you were going to be able to do it. Right. You know, and that's really cool. It's cool that you did that. Yeah, it was a lot of work to get there. Yeah, I would imagine, like because, because I don't know how you don't say why me? Or why her or why us? You know, and I did yeah,

Johanna 1:02:30
yeah, for sure. I did. But I did get to the point where it didn't matter why. Because what I came to is that these things happen in nature. Like, that's just what happens is that sometimes, you know, you get extra chromosomes, sometimes tentative things happen, like these things happen. And it happened to me in my body. And it happened to her just like the diabetes did, and but I did with all the work that I did, because of her down syndrome. When the diabetes came, it wasn't that hard for me to accept, it was harder for my husband to accept. But for me, it's like, Okay, I've been down this road before, like I you know, I can't bang my head against the wall because it won't change anything. She has diabetes, let's just go with, right.

Scott Benner 1:03:18
I asked this question a lot in these scenarios, and I'm frequently surprised by the answer. So I'm gonna ask it here. Magic Wand, something can go away. What do you pick?

Johanna 1:03:31
Down syndrome? Yeah, seems Yeah, that's what I because it because it created all the other things, right. So it created the alopecia created the hypothyroidism, it created the diabetes, it created her brain condition that caused the stroke. So for sure, I would take away the Down Syndrome.

Scott Benner 1:03:49
It's the founder of the face in this situation in not a positive way. I mean, I thought, like I said, seems obvious. But the amount of people I've asked questions to where I thought the answers to those questions were obvious. They say something different. Like sometimes people say neither. But I'm, like, fascinated by him. Like you can't even in a in a make pretend way. Pick one. And they're like, No, that's like, okay, where they pick, you know, keeping diabetes over something you would think you wouldn't choose vice versa. So it's interesting to ask the question, is there anything that I haven't asked you that I should have or anything that we've missed?

Johanna 1:04:28
No, I think we covered everything was pretty good.

Scott Benner 1:04:32
Are you saying I did a good job? Is that what you're saying?

Johanna 1:04:34
I am saying you did a good job.

Scott Benner 1:04:37
Because I already earlier said you did a good job and you did not reciprocate so I wasn't sure. Oh,

Unknown Speaker 1:04:42
I'm sorry. No, I'm

Scott Benner 1:04:43
teasing you i God my God. I don't mean that. How many people do you think heard that are like ah, so insecure? Really was just joking. Okay, so how much pressure do you feel in this conference? ation right now not to misrepresent Down syndrome for the people who might hear it or for who? Or for the people who are going to be learning about it. Does that feel like a responsibility? Or have you not thought about that?

Johanna 1:05:14
It feels like a background responsibility. It's a responsibility I always have. When I'm talking about my daughter, and really, I'm talking about one person with Down syndrome, and her experience of what Down syndrome is like, in our experience of what Down syndrome is like, and she's an amazing child. She's easiest of all my children. She's very easygoing. She's, you know, happy and she just loves being with her mom and dad and her sisters. Like, she's really a great part of our family. And so I think it's easy to, to represent her positively. Because our experience of her is very positive. I mean, all the other conditions up until diabetes and then the stroke have been very manageable. And haven't really impacted her life so much. I mean, for sure, the alopecia does, because she doesn't have hair, and she would really like her. And it's one of the first things that you notice about her when you see her. So whether it's Down syndrome, or or the alopecia first sort of, you know, up in the air, which one it is. And so that's been quite impactful. But in terms of, you know, her day to day health has been super good. She's never been hospitalized until this year with the diabetes. And she's such a great part of our family. Yeah,

Scott Benner 1:06:38
that's cool. I see. It's funny, because when when I looked at the list, I thought, well, alopecia that sucks, but great opportunity to wear a bunch of hats. But she can't. That's not the process. Her mind goes through it, right. She doesn't like yeah, it's just this thing's gone now. And it's either a problem for or it's not, and it ended up being a problem for I see. I tell you having more kids, ballsy as hell, you're reading the bravest lady I know. Or were you were high as a kite. I don't know what it was exactly. But I don't know how you made I couldn't, we couldn't even make the decision to have a third kid after the diabetes. Like I that's really, that's really something

Johanna 1:07:22
want p to be alone in the world after my Can I work on? So I really felt like it was important to have siblings. I felt like having my twin. And growing up with siblings was a really wonderful part of my life. And I'm still very close to my twin. And I wanted that for her. Yeah. And, and the twins are amazing. Like, but definitely, you know, a very different experience than having P just twins in general.

Scott Benner 1:07:54
Does your twin have any of the medical issues that you have? No, no,

Johanna 1:08:00
no, no, her kids don't have Down syndrome. They're, you know, totally healthy.

Scott Benner 1:08:05
Her name is lucky because that we call her

Johanna 1:08:10
her name is Meghan. Okay.

Scott Benner 1:08:11
Every time you see her, do you look at it go you mother. Okay, all right. Fair enough. You seem like a decent person. That's what I would do. I'd walk right. And I'd be like, Oh, there's the one that just didn't get any of the stuff. No, no, that's, again, almost mostly joking. Okay, so I feel like we're done. Let me let me tell you right now, because I know you're you're very concerned about I've made a note every time you use PS real name. Every time you cursed. You know you said once once. That's right. You did. I was I was like, Oh, she is Canadian. As soon as that happened, and use your husband's name, do you want that out? Or is that okay? Oh, that's okay. Okay, great. I can't thank you enough for doing this. It's my pleasure. And thank you. Yeah. Do you actually listen to the podcast? Or are you just doing this?

Johanna 1:09:08
I do. So strangely enough, I did not listen to podcasts until he got diabetes. And then I found your podcast within days of her diagnosis. And I listened to obsessively and it's the only podcast I listened to. So I probably listened to hundreds of them now, but I really do find value. I love both. I love both listening to people with diabetes and their lived experience. And I really enjoyed listening to the parents as well. So I liked that you have both on there because I think they're both valid experiences. But yeah, I really enjoy it.

Scott Benner 1:09:46
Isn't it a strange strange thing that the sentiment I can't it's lovely if you to have parents and adults with type one diabetes on the same type one diabetes podcast. Isn't it odd that that's just obvious to me? People sometimes, you know, like or, like, you know, I, somebody's only type two once and I got a note, never have people with type two on again. I was like why this is a podcast or type bonds? I was like, No, that's not what

Johanna 1:10:15
your podcasts you can do whatever you want well,

Scott Benner 1:10:16
so I can pretty much do whatever I like. Yeah. And by the way, I always think this too, it's free Shut up. Just Just so everyone knows, any of your feedback that comes in my first thought is, hey, it's free, shut up. And then I go to your actual the substance of what you've said. But you so i, and this podcast brought you into the world of podcasts. You did not listen to any and now you listened to many.

Johanna 1:10:44
Well, I listened to yours. Listen to any other.

Scott Benner 1:10:49
When you said hundreds you might you've listened to hundreds of mine. Yes, hundreds of years. So I thought well, that's better than what I thought I thought you might you're listening to other podcasts and I was like, No way from the time you can listen to mine. So I'm not thrilled about that. But

Johanna 1:11:02
no, no, I listen to your episodes. Okay. Yeah.

Scott Benner 1:11:05
Well, then that's the review I want from you on Canadian Apple Music, the only podcast I listened to.

Johanna 1:11:12
I didn't review at one point. I don't remember what I said.

Scott Benner 1:11:15
Oh, that's very nice. I am going to turn it into a t shirt and consulted people the only podcast. Anyway, thank you so much for doing this. Would you hold on for one second for me? Sure. Thanks.

Huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGL. You see ag o n.com. Forward slash juicebox. And don't forget to check everything out at juicebox podcast.com. And if you're going to support the sponsors, please use my links. They're available in the audio app you're listening in right now in the show notes of those apps, and at juicebox podcast.com. Or just please take the time to write them down and type them into our browser. It really does help the podcast. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.