Every #FeelgoodFriday DiAthlete will share an exclusive, insightful and empowering interview (or #DiAviews) with a connected voice in the type 1 diabetes world.
Scott K. Johnson, born and raised in Minneapolis, MN, in the United States, has lived with type 1 diabetes since the age of 5, diagnosed in the April of 1980 – “coming up on 40 years already!” as he openly shares with an element of excitement if not determination from his journey, that the world-popular blogger/vlogger is to open up on with us. Scott recently resided to San Diego, CA, where he works for mySugr – the personalised diabetes logbook app – and for many years has built a network by being transparent about his condition whilst willing to try and sample new devices and advancing technologies. You can connect with him on social media platforms of Twitter, Facebook & also Instagram as @scottkjohnson.
1. You’ve lived with type 1 diabetes a fair few years now, to be kind, and for a good number of years you’ve also been an advocate in sharing about advancing technologies – so I want to go way back here to when you were diagnosed: can you share with us the depth of change you have seen in diabetes treatments?
SJ: “There has been so much positive progress since 1980. It’s a whole new world. I started with an “exchange system” meal plan that had very little flexibility, combined with old insulins that took hours to peak (Regular) and/or peaked at weird times (NPH), all measured and monitored by peeing on urine test strips to check my blood sugar levels. One huge step forward was moving from monitoring sugar levels in urine (hours old by the time it’s checked) to measuring blood glucose at home (immediate feedback). I can still remember my mom on the phone fighting with the insurance company to get access to more test strips – reminds me a lot of how CGM access is today. The next big change was getting away from Regular & NPH to faster and/or flatter insulins and using the newer insulin in an insulin pump. Today, I think the most helpful beneficial change is CGM. A CGM or FGM technology provides so much information and feedback. I can’t imagine doing diabetes without it. I’ve also been Looping for some time now, and enjoy that a computerized system is checking on me and my diabetes every 5 minutes. That’s way more often than I could think about it even if I were 100% focused on it 100% of the time.”
2. What would you say was the most psychologically challenging element of growing up / adapting to life with this condition for you?
SJ: “Great question. There are many psychologically challenging aspects of growing up with diabetes. Diabetes forces maturity and responsibility on us at an early age, and even then, our developing brain struggles to keep up with both the daily demands AND the long-term foreverness and consequences of diabetes. Looking back, I’m amazed I even survived! For example, today it’s hard work to play basketball for a couple of hours. But when I was a teen, I’d play ball at the park ALL DAY! How did I do that?
That said, diabetes management was a lot different then. The tools and medicines we have today allow for a much higher level of monitoring and micromanagement. The cost, though, is that we have a much higher level of monitoring and micromanagement.”
3. Of the ‘old school’ diabetes treatments (this could be previous glucometers, insulin syringes, urine strips, bayonets…) what was your favourite and why?
SJ: “This is a very hard question! I’m so glad to get rid of all old stuff once a new tech comes along to replace it! I think the most memorable for me is the ‘guillotine lancing device.’ I think because it’s brutal and often used to make fun of our old diabetes gear.”
4. In the present day it is fair to say there is a lot more flexibility and variety in diabetes treatments, but as someone who has experience in changing from one device to another, is there any psychological challenges which come with this – and if so, what would be your advice to people who might be altering their diabetes treatments or devices?
SJ: “Yes, there is a LOT more flexibility and variety in diabetes treatments. I love all of the advancement, and use as much of the new stuff as I can. But it comes at a cost, as mentioned above. Everyone needs to balance satisfactory diabetes management with a good quality of life and figure out what works best for them. If what you’re doing works well for you, forget about what other people are doing. Stay aware, so if your situation changes you can adapt, but there’s no need to follow the crowd. You know your diabetes best. I also believe that with diabetes, there is no such thing as small change. Any change, even a positive one, can be a disruption to your routine that you need to reconcile. Give yourself space and energy for that.”
5. Recently we heard you got out on a bike. Congratulations! How was that? Tell us about the ‘Death Ride,’ how it went, what it was for and how you survived?
SJ: “Scott’s Death Ride! Yes! It was an amazing experience! I rode my bicycle more than 100 miles through the famous Death Valley, California recently! Coming together with such an amazing group of people all helping JDRF raise money for people with diabetes was remarkable. I trained hard for 16-weeks and it was still a very challenging ride, but I’m very proud of my accomplishment! It was a great reminder about what can be accomplished once you set your mind to it. I learned a lot, met a ton of inspiring people, and grew immensely along the way.”
(Image of Scott with Gary Scheiner, from Integrated Diabetes Services and Becky Furuta, from Team Novo Nordisk after completing the Death Valley Ride)
6. What would be Scott’s message for others living with or connected to type 1 diabetes around the world?
SJ: “My message for people with diabetes is to stay hungry for knowledge and share your story. Connecting with others can be empowering and inspirational!”