We're proud to continue our series of interviews with the 10 empowered diabetes advocates who've been selected as our DiabetesMine Patient Voices Contest winners for 2018 and will be attending our annual Innovation Summit in early November.
Today, we're thrilled to share more on fellow type 1 Jim Schuler, a med student in Buffalo, NY, who has a particular interest in data research and how it impacts adolescents living with diabetes. He's also a passionate advocate involved in D-camp locally and coordinates a Buffalo-area diabetes support group called D-Link. Without further ado, here's our recent chat with Jim...
Talking with T1D Advocate Jim Schuler
DM) Hi Jim! We always like to start with your diagnosis story...
JS) In the summer of 2004 when I was 12 years old, I started experiencing the classic signs and symptoms of diabetes: getting up in the middle of the night to use the bathroom, drinking a ton of water (and any liquid I could get my hands on), and losing weight. My family was planning a huge vacation to celebrate my parent's 25th wedding anniversary – a trip to Glacier National Park in Montana and Yellowstone National Park in Wyoming for 2.5 weeks. So my mother brought me to my pediatrician on August 2 to get me checked out before we left. At my pediatrician's office, my sugar was 574 mg/dL, he said I had diabetes, and we would need to go to the Women and Children's Hospital of Buffalo (WCHOB -- now Oishei's Children's Hospital) Emergency Room.
Whoa, so what happened next? Did you all still go on vacation?
I was an inpatient for three days, where I learned all about diabetes in some intensive education sessions. My one wish at that time would have been if they made me do my own injections from the start, but I didn't, and my mom or dad did them for a few months. I left in-patient care, and the next day we got on a plane early in the morning headed to Montana. We went on that vacation and I had a great time -- my parents were understandably stressed the whole time. It had all come as a shock, as we had no history of type 1 diabetes or autoimmunity in my family or extended family.
Which diabetes tools did you start off using, and how has that changed over time?
I used Humalog and NPH vials and syringes for about a year and a half, but got an insulin pump (Medtronic, still with them) before going backpacking with my father and the Boy Scouts one summer. I used one of the early CGMs from Medtronic a few years later, but it was generally awful (well, at least for teenage me). I thought the needle was huge (harpoon), and it was inaccurate. In the end, I didn't utilize it much. Fast forward a few years, and I try the Dexcom and it is everything CGMs have promised to be over the years: accurate, long-lasting, reliable. I continue to use a Dexcom (G5) and Medtronic insulin pump.
What’s gone into your decision on CGM and pump choices?
I have a Minimed 670G Hybrid Closed Loop and have tried their sensors, including with AutoMode, but have found I’m so ingrained in interpreting the data from Dexcom it’s hard to switch. In general, I think the new tech is great for many people, though.
Diabetes technology has certainly progressed over the years. Any specific observations on the changes you've seen?
I believe all the technology is great, but behavior remains the determining factor in how someone manages their diabetes. For example, insulin pumps are great and can make life easier in terms of reducing the number of injections and such, but a person still has to be conscientious about what they are eating, count their carbs correctly, and finally bolus -- even with a 670G. Additionally, CGMs are great, but if someone calibrates it inappropriately, or doesn't use the data in the right way, it is essentially worthless.
You're in medical school, correct?
Yes, I am in my second year of graduate school at the University of Buffalo with a hope to finish the program in 2022. I'm studying Biomedical Informatics, with a focus on computational drug repurposing -- I use computers to find new uses for old/previously approved drugs. After completing my PhD, I will return to medical school to finish years three and four. Diabetes is the reason I am in medical school... well, in part.
How exactly did diabetes drive your career choice?
Throughout high school and the early parts of college, I wanted to be an astrophysicist and study stars and black holes and the like. Well, I didn't like my physics courses as much as I was hoping, and I had really enjoyed my time as a diabetes camp counselor the previous summer, so I started to seriously consider biomedical research or a career in medicine.
Attending and being a counselor at diabetes camp made me choose to build my life around helping others. I wanted to do more than 'just' be a physician, however, and research is an avenue to do just that. One of my projects during my PhD years is analyzing data collected at diabetes camp to improve care for children with diabetes. Additionally, I am working on an interface for better collection of data, and keenly want to learn as much as possible about design and human factors engineering as it relates to diabetes.
So, is your ultimate goal to work with children with diabetes?
Yes, I've always loved kids, working with kids, and helping them be their best self. My plan at the moment is to complete a residency in pediatrics, albeit one with protected research time -- I never want to lose that part of my life -- and then likely sub-specialize. That send decision is certainly not set yet. Obviously endocrinology is near and dear to my heart, but by the time I get there, diabetes management will be drastically different and I believe have less of a role for a physician to play, so I am highly considering pediatric cardiology.
That being said, if when I return to the third year of medical school, the most clinically intensive year with many rotations throughout the various specialties, and I LOVE surgery, then by all means, I will follow my heart. If that is the case, I will return to using the Minimed 670G in AutoMode (or whatever iteration is out by then) to handle long cases. I imagine in the past it was difficult for a person with diabetes who really wanted to do surgery or have that lifestyle to manage their diabetes in an ideal way.
We talked years ago about your involvement in the support group D-Link... can you share more on that?
D-Link is a support group run by the University of Buffalo, at the only pediatric endocrinology center at the Women's and Children's Hospital. It was started by several medical students whose siblings had type 1, and who saw them struggling and wanted to give back to the community they were in at that moment. They would send out a yearly flyer with all the topics and meeting dates, etc. I was interested and attended my first meeting many years ago, and the rest is history, as they say. I now run D-Link, with the help of several medical students and pediatric endocrinologists.
Weren't you just a kid yourself when you first connected with D-Link?
I started going in about 9th grade, so let's see... about six or seven years now. I started as a member going to meetings, and I was super interested in not only interacting with the medical students and hearing what they had to say, but also educating the medical students, because they didn't know a whole lot about diabetes. And then once I got to college and started working in diabetes camp, I kind of turned from member to sort of facilitator and leading discussions, not in an official role but the medical students who were running the meetings at that time kind of looked to me to guide the discussions on issues that I knew people would deal with in the future. After a few years, I moved into the role of planning meetings, topics to talk about, planning dates, and administrative duties.
And what's involved in a typical D-Link group session?
We meet twice each month to provide an opportunity for young people with diabetes to get together to share their experiences and grow from the support of their peers. Our mission is to provide adolescents in the Buffalo and greater Western New York community with support for living a healthy life with diabetes. By exposing members to peers faced with similar difficulties and by guiding thoughtful discussions, our organization aims to strengthen each member’s ability to live a happy and healthy life alongside diabetes. By organizing friendly social events and exposing each member to older role models, we aim to provide our members with a sense of comaraderie and confidence in themselves to become thoughtful leaders for all other young people struggling with diabetes and diabetes management.
Very cool. What other diabetes advocacy efforts have you been involved with?
I've been a regular volunteer for the ADA and JDRF at various fundraisers throughout the years, and a yearly, reliable participant in other fundraisers (Tour de Cure, OneWalk).
But (aside from D-Link), what I consider to be my largest advocacy effort is diabetes camp. I have volunteered at several diabetes camps over the past nine years, including two ADA camps, Camp Aspire (my local one) and Camp K (Anchorage, Alaska), and one YMCA camp, Camp Yowidica at Camp Onyahsa. When I started I was a camp counselor, watching and playing with the campers all day. But since I started medical school I have been a member of the medical staff, i.e., the ones who are helping the kids calculate their insulin doses and making changes to insulin regimens based on their needs (previous highs and lows, planned activities for the day, etc.).
I've moved "up" in this regard to being a "Lead Cabin Clinician" and "Assistant Medical Coordinator" involved in the teaching of new medical staff every year and being the "go-to" person to answer any and all diabetes issues throughout the day or night. As noted, as part of my PhD I am in the process of analyzing camp data to help us make better decisions overnight to keep the campers safer while cutting down on the amount of "awake" time for the medical staff.
How did you first get involved in the DOC (Diabetes Online Community)?
I read many of the great blogs over the years, especially when looking for "practical" everyday advice, and did some mild social media stuff with "Juvenation" (now called TypeOneNation and sponsored by JDRF), but my involvement with the DOC really took off last year when I got a Twitter account. Who I follow on Twitter has 3 prongs: diabetes, research (grad school stuff), and sports (i.e., running, cycling, and a bit of triathlon). I love the @TeamNovoNordisk tweets -- gets me inspired to get off my butt when I feel lazy!
What do you think is the most important thing to focus on in diabetes care right now?
From my skewed perspective of working with mostly kids and teenagers, I often like to focus on the "back to basics" of diabetes management. Check your sugar at least 4 times per day. Count your carbs. Take your insulin. Carry something in case your sugar is low.
Given the chance (at our Innovation Summit), what would you want to tell the diabetes industry?
Selfishly, I would like more tech and innovation to focus on exercising, as I have found the key to managing diabetes with exercise is all trial-and-error. As of now, I am concerned about using the 670G in AutoMode during exercise, and so continue to use it as a traditional pump in conjunction with my Dexcom.
What are you most looking forward to at the Innovation Summit?
Meeting the like-minded individuals who want to make a difference, seeing a little bit of San Francisco, and connecting with someone with more full stack software development capabilities to help me work on a project for diabetes camp.
Thanks for taking the time to talk, Jim! We look forward to meeting you and hearing more of your POV at our Innovation Summit this Fall.