The Dialogues – Episode 6

In this episode, happy-go-lucky Jackson, with a different take on life and diabetes thanks to growing up in a family of T1Ds, is taking us on his crazy journey with diabetes. Find out how within a time frame of 2 years, more than a quarter of Jackson’s family discovered they have diabetes. Moreover, Jackson is talking us through how to approach diabetes while you already know the game and how he finds out he himself is a T1D (spoiler alert: he predicted it himself ).

P.S. Do not miss Hank’s introduction – the newest NJaP team member.

Watch the entire video:

Hi, Jack. Thanks for joining us on The Dialogues.

A pleasure to be here, Pete. Thanks for having me. Well, it’s raining in Melbourne right now, so I thought of getting out there as there is not so sunny sunshine.

So, Thanks again for joining us for dialogue. You and I had a bit of a chat last week and that was really fun and I learned a lot about you, so why don’t we jump in? Because you’ve got a really interesting diabetes story that we would like you to share with us. We will jump into your family stuff because that’s great but before that please tell us about your diabetes story from the start. 

Alright, let’s go back to when I was 16. I had no clue what diabetes was, whether type 1 or 2 and then one day my sister became sick like becoming super thirsty, urinated a lot, having migraines, and was unable to sleep. I think we went on that diabetic journey through her. I must say she’s a super optimistic little sister and our family gathered around her and learned everything we could to know about diabetes. I think we had a very soft introduction. They made all the doctors and specialists that we saw at that time said, look, you can live your full life and can manage it but you just can’t be an astronaut or go on the frontline of the war and my sister thought great I wasn’t planning for that. Then after six months, I became very thirsty, tired, and picking up on those signs. So I came home after school one day and told my mom “I think I have diabetes”. As I used to be a prankster so no one really believed me until we used my sister’s blood glucose reader to detect it. At that time I was 15 and my sister was 10. 

Six months later, when I got diagnosed so I had a greater responsibility being an elder brother so I had to fade into optimism so I tried to handle it the best way I could so now we had a completely different paradigm. To everyone else who gets diagnosed and feels isolated, here I and my sister were doing great. Actually, she was at an age of 10 years, in primary school who really wanted attention. And this was her differentiation tool so she found it as a positive spin and I, as a big brother, started to look that away from her. 

I also think that sometimes we should be proud of having that little differentiation factor, Weirdly,  like it is. You know, it’s not something you necessarily want, but, I guess you can definitely make the best out of it, right? 

Yeah, definitely we do. Some people actually hate the idea that it takes over your identity, but I don’t think so. I think it is something that adds much to your identity. Thus I’m not ashamed of saying that I am diabetic. It’s a great icebreaker like if you have ever been in a conversation with strangers or if you just want to say no to some fairy floss. But yeah, the family introduction or the diabetic story doesn’t end there. So I am the eldest of four kids and I’ve got three younger sisters. My middle sister got it first, then I got it and then one day my little sister was cracking it because we were eating ice cream early after dinner and she stormed off saying, I wish I had diabetes. So be careful what you wish for. Then a week later, she had more symptoms and got diagnosed approximately six months after me. At that time she used to be  7 or 8. Then we’re all at the dinner table again and my dad just put his fist on the table saying, “Hey, look, if I had diabetes, I’ve managed it much better than you three” and he got it a week later. 

So you’re six months later and then your younger sister was another six months later which means that the three of you got diagnosed within a year and then your dad got it.

Like roughly a couple of months later, we didn’t exactly remember but Yeah, we all got it over the course of two years so among the family of six, the majority had Type 1 diabetes. We got genetically tested at the Royal Children’s Hospital at Melbourne that specializes in it, and it turned out that we were all carriers of the gene except my other sister who could get it but it wasn’t triggered. 

Do the doctors hypothesize about what it is? I mean, is type 1 diabetes just purely genetic or are there any other hypotheses?

Well, there are plenty of hypotheses over the Internet. I remember when this was happening. It was in the news saying, It’s something to do with dairy, so don’t drink dairy and koalas can get diabetes without dairy, so it could not surely be true. However,  it’s a virus that went through the house. This is what we heard over the Internet as the Internet is leaning towards viruses but I believe it because I think the virus did go through the house and my sister that didn’t get it wasn’t really in the house around that time, so we all got it. Then we just stayed latent that triggered us later over the next two-year period. So that’s why it would be such a hard thing to track down and figure out what has triggered it in reality but still, it’s mostly my perception, and it feels like out of all the hypotheses over the internet, this one feels right for me. 

Another thing we need to keep in mind is that every marsupial and mammal can get type 1 diabetes. I’m not sure about reptiles or birds, as far as I know, definitely marsupials and mammals do. So to me, genetics are triggered by viruses. Besides that, one more research has recently estimated that there are a lot of correlations that young Children who have had coronavirus are more likely to develop type one diabetes later in their lives. That’s what the Internet is saying at the moment. 

That’s a pretty quick turnaround. I mean, it wouldn’t surprise me, because I would unscientifically hypothesize that anything that is messing with your immune system due to any malfunction, your body looks at these beta cells as foreign bodies and doesn’t recognize them so it’s sort of this chemical cascades unimagined. You know, many things could set it off, so I wouldn’t be surprised that COVID 19 could stimulate it. 

Yeah. That is something pretty novel. so there could be an influx of type ones. 

Are Your mom and your sister nervous at the moment? 

No, not nervous. I think my mom’s just trying to manage us all but yes sister is a bit and she should be nervous because she’s got a phobia of news. 

So do you know about any other household that has diabetes to this extent? 

Not personally but thanks to the Internet, there are a couple of households who have gone through the same. It’s just like a genetic lottery that triggered it.

I suppose you and your family are lucky in some sense that you have got that support that you all are there for each other. And, you know, I suppose that it does make it a more positive experience. 

Definitely true, and that’s why it was such a different experience for us. When I started jumping into the type one diabetic community, everyone was telling me and I was also getting a feeling that everyone’s super isolated. I’ve met diabetics in the real world that I guess didn’t really have any support or anyone to whom they could connect to. Whereas I had my whole family as a support group and we all shared our experiences across the dinner table so that was a very different experience for myself and Yeah, I think that’s why I really try to promote getting engaged with the type one diabetes community whether in person or virtually (digitally) and It’s indeed fantastic. You meet people that have all these experiences so you feel that you’re not alone. 

So, you do have a very positive attitude towards diabetes and you also do give back to the community quite extensively. Do you share with us about your adolescent experience? Like maybe you’re on the spectrum of having a particularly positive perception or maybe your attitude towards life and this might be a part of your upbringing that Your family enabled you to kind of look at this thing quite optimistically. For example, some people can actually go the other way, right? They can feel pretty shitty about what they’ve got and they can feel really low about it therefore they feel that their life sucks as they have this disease. However, this doesn’t seem to be your outlook at all. 

Well, yeah, I think the deck was stacked the other way for me. I have not really experienced the serious downs of this condition and I’ve never had the chance to hide it either which, I believe is another triggering factor to isolation because it’s such an easy thing to hide that people want to go about it as normal as possible. However, all my mates knew what was going on. They knew my sister was a type one diabetic. I got back there and I had whole high school news so I just went about my day saying “Hey, guys. I am Diabetic! Look out!” So I guess like I said, my whole deck was stacked in a different way from the start because I already knew how to speak French and I was also kind of aware of the ways to manage it. I knew my possibilities. I knew that my life didn’t have to change all that much. It was the same year and I think I was 16 years old and I was doing life surfing and a whole lot of other camps but it was a very tough year with lots of hypos. I guess I was ignorant in that aspect where I didn’t really think that I couldn’t do anything. It was just a matter of managing it. 

So have there been any lowlights for you? 

Oh, just maybe when I’m running out into the surf and then realize I’m hypo and have to run back to eat something. There’ve been a few hairy moments where I could not find any food or I left the insulin in the sun so the low lights would more be around having to see specialists, doctors, and requiring insulin. But if anything, it’s kept me healthy and I stayed away from negative things in life, like I don’t know, party drugs and everything and yeah, I guess for me the positives outweigh a few negatives. 

Well, that’s cool, I guess. Yeah, that’s cool. So talking about interaction with the medical community, I’m always fascinated, actually, about understanding people’s sort of interaction. probably because I haven’t had a lot of interaction and what I have not had necessarily been negative, but it’s not that helpful, I suppose. Until recently, I found a great nurse educator and I’ve engaged a bit more to the community. So I’m interested in staying engaged and finding out about CGMs as well and other technology that’s coming. So, this kind of interests me a lot. But before that, I didn’t see anyone for ages because you know, the Endocrinologists would just ask the same questions so every time you go, you spend the first half an hour answering the same questions you answered last time.  Well, this isn’t really helpful for me, so I didn’t bother. But what’s your general experience like since the beginning with the medical community? 

Alright, I’m having better, I guess. better relationships now as compared to when I first was diagnosed. I was self-diagnosed at fairly low sugar and had been in a honeymoon phase for nearly two years so my medical providers kept putting me on doses that weren’t working out for me hence I spoke to them and they were like, “Okay, try this” and doing that again and again and those doses were too high therefore my sugars went always too low. So I think from the start I just stopped listening to them. I was like I got the game and now I know how to play it. I thought I’ll just gonna do it myself because it’s safer to do so. So I did that. I stopped listening to them, and I had my long-acting insulin. I started just working it out that way. In the beginning, I  just had long-acting unless I was having a high carb meal then I had a little bit of insulin to correct. It was the safest thing to do. So I just had to take it into my own hands. And guess what?  Recently, my GP just kept saying “you don’t need to see any specialist, you just need to see me” I’m like, “that’s okay. Alright, that’s strange”

Yeah, that’s interesting, actually. What I make out of that is that actually, in the medical community ( well, I’m not against the medical community) but I think there is a competition for treating diabetics because I think, we’re worth something to the community because if you’re managing a diabetic, you get a lot of contact and thus you get paid for it. I understand why GPs wanna manage it because I think that you know, it’s a lower level style of management or it feels like you have to go to the hospital to see the specialist as referred by your GP such as for eyes, feet, and so on and so forth. So you can kind of get the treatment. Though I don’t mind GPs doing that, I have noticed competition to manage the diabetics. 

Yeah, I have not found it really ironic because I went to see an endocrinologist as i got referred to him but I do have a diabetic educator. I think it’s important to check in with diabetic educators for a number of reasons.  Like you said before. you know where the technology is at and they know what’s coming into Australia. Once again, the Internet’s a bit different. 

However, like I’ve been trying to move away from the disposable ones only because they increase wastage, especially when you go camping or you know, you’re living in a small space or you’re traveling, you want little cartridges that you can pack, not those pens, which just take up so much more. And then when you use them and they’re done, you’ve just got a piece of plastic. I spoke to the diabetic educator about it. It’s a little like a diabetic hack here because they will have pens for you to have for free so I would say to get those reusable pens. Except for the hardest part, there is making sure that the chemist and also the GP write the correct prescription to get the cartridges because they’re so used to handing out disposable pens. 

So now, how often are you engaging in the medical community and how is your experience?

It is pretty good. I think I’ve worked it out for myself in a weird way. Like if I have a problem, I know who to speak to and if there is something not normal, I know who to call but at the same time, I don’t use them as often as I should. I still go to the GP to get my HBA1C checked every 3 to 6 months. Right now my HBA1C is 7.1 so I’m definitely aiming to get that down but it fluctuates more depending on your lifestyle and as things change, so you always have to be on the top of it. 

What about your family? Do you all see the same doctors?

No, no, we don’t. I don’t know why we had a family doctor, but he wasn’t working out for any of us, so we all kind of just did our own thing. We found our own doctors.

What about current management? Like we would like to hear from you what you’re doing and what you’ve done. I know, you’ve got a Libre on right now. So I am a bit curious to hear about your whole experience with moving to CGM and what you’ve tried, what’s working, what’s not? 

Yep, CGMs, I think, are the game changers for type one diabetics. I’ve tried pumps. I’m on pens. I’m currently using the Freestyle Libre. I have the NightRider for the freestyle libre to turn that into a CGM. However, I don’t use that often because you have to keep changing the battery, and it’s very clunky. In addition, it has the cap that fits on top of it around. The first issue that I ran into is once it worked for one week and I got it all set up and It was great, then when I pulled it off, the libre got stuck in and I couldn’t use it again until I worked out how to pull them apart, Thanks to the Internet, someone came up with a solution so there is a way out. You need to dig out the back of the Freestyle Libre and then pop it out with a spoon. So yeah, right now, I am managing with a flash glucose monitor, which is the Freestyle Libre and pens. And also just trying to eat a low carb diet whenever possible and also exercise, I’d say exercise is a big part of the management because that does keep my levels in range. 

Yeah, I believe that exercise totally is a game-changer for many reasons, right? Not just your blood sugar levels or general day to day health improvement, but also I have noticed that I need so much less insulin when I exercise consistently, I have noticed that through exercise, my insulin sensitivity has markedly improved. What is your opinion about that?

Definitely. I think it’s so important. It increases your insulin sensitivity, and it just activates your body so everything is functioning much better, right?  and you feel better about it. So I think it’s good for mental health as well. I think it’s just good for overall health, and once you get into a rhythm, it’s really fantastic. So, what I do is that I go for runs being in lockdown and originally it be surfing and swimming as well, 

As you are highly engaged with the community and you give back quite a bit so do you want to talk about your work and what your expenses have been? 

Sure. working with type one diabetes community has been really good and let’s just say that in the last few years approximately 5 to 7 years, the community has really exploded so I  dove in it after doing a solo trip to India just to share some things, actually I was curious about what people were doing and how they were managing it. But as soon as I jumped in there, I was like, Okay, cool. There was a big group out there with a lot of social influences but where the Australian ones? A bit harder to find. 

Last year,I was thinking about doing a meet up just to catch up with all the Melbourne folks with type one and It’d be great. I’d love to do something that was real not digital and I think it was just about to hit Enter and I saw someone else that was really local, actually put up that he wanted to do a meetup. Well, I thought it would be great and got in touch with him right away and we were like Let’s do it, let’s promote to our channels and Let’s catch up with everyone in Melbourne, that was the launch of the Diavengers. This name was actually done by Alex. One of the youngest members. Now we still catch up, and it’s mostly young adults. I guess once you get out of that adolescent phase of life, there is no support. There’s no diabetic camps hence you just sort of get left in the lurch, especially if you’re diagnosed at 18 onwards and the only diabetics I know and the people I know are specialists. So the Diavengers is sort of trying to get around. Now we do Zoom meetings, and it’s actually been my main social life recently, So I’m diving in and loving everything everyone’s doing in the community like T-shirts designing as you can see the one I am wearing now. It’s written here “T1D” though very subtly, so this diabetic brand is done by Simon, who lives in Melbourne. 

There are a few great diabetic brands here with great designs in Victoria. And I like their design ideas because they look cool and help subtly in promoting that awareness. It’s supposed to start that conversation up if anyone ever wanted to know. And there are other brands like insulin addict, super red etc. and they have a great style. 

What is an insulin addict? 

Insulin addict is among a few brands out there. it’s just about supporting each other and getting around it and creating awareness. I mean, it’s a great way of doing it and it all comes back. Thio, help us out. 

So let’s start wrapping up the discussion so Is there any other thing that you want to give a plug for, in terms of the community, I think like the shout outs here because we’re talking about little brands that are not working to make a global profit and have no such kind of motives. So, are there any other such initiatives?

Yeah so this one that I am wearing today’s from a brand called “One difference”. I have to say about the type one foundation that is working to bring together the community in Australia. They really support families and individuals who have diabetes and make that whole process extremely easy which includes the process of acceptance and access to information. So definitely get around the type one foundation and also ‘not just a patch”. 

I too use a patch that is placed on my chest. I do move it around my body a bit just at the locations that work. 

Can you please send me some photos? We will put him on our Instagram page.

Sure, Yeah. One thing that I must say that what you’re doing is fantastic. Before you, I was using Tegaderm film, which is more of a wound Holder but these patches work so much better for the freestyle Liber. It’s breathable, It stays on, and it’s easy to get the tape off. You could need to replace it and put another one back on. 

You are such an inspiration for the community. I think you know, you’ve got such a positive outlook and you’re a great example for all of us especially the type of attitude and value to give back to the community. So I appreciate you being a part of the dialogues.

Thanks  Pete, I love what you’re doing and I love your brand and I’m stoked to meet you and speak to you. It’s been fantastic. 

Thanks a lot, we will definitely speak soon. Have a great day.