We’re happy to be back today with the next in our series of chats with our 2014 DiabetesMine Patient Voices Scholarship winners, who’ll be representing the patient community at our 2014 DiabetesMine Innovation Summit at Stanford University in November.
Today we’re talking with Jeff Mather from Massachusetts, who’s marking his 15th year of living with type 1 and is an active member of both the general Diabetes Online Community (DOC) and the D-tech circuit, i.e. #WeAreNotWaiting. By trade, he’s a software engineer who also has a knack for photography and endurance sports…
DM) First off Jeff, what’s your D-story?
JM) I was diagnosed in 1999 at the age of 24. This year, my wife, friends, and I are holding a quinceañera for my diabetes, following up with the Bar Mitzvah we had for it a couple years ago. My T1 diagnosis story is fairly typical: after a very hot, thirsty summer — during which I felt miserable and lost 50 pounds over six weeks — I went to the doctor and then spent the next few days in the hospital learning how to live my new life. I’m the first person in my family to have diabetes.
Tell us about your involvement with the online diabetes community.
My involvement with the DOC began in earnest in 2009, around my 10th diaversary, when I started writing about it on my blog. Until then dealing with diabetes felt very solitary, and I was very happy to find a group of like-minded people. Some of these folks have become among my best friends. Lately, I divide a lot of my time with the DOC between the diabetes technology and endurance sports communities. Around the same time that I found the DOC, I became a patient advocate for a local hospital. Much of my role involves helping CDEs, physicians, and hospital administrators communicate with patients who visit the out-patient diabetes clinic.
Your blog has photography weaved into it… is that a big part of your life?
I used to be pretty big into photography — hence my photo web site — but I haven’t done much “serious” work recently. For a while I was working on a landscape project to photography the human/nature boundary in each of the 351 towns and cities in the Commonwealth of Massachusetts, where I live. I just didn’t have the time to do it well once I started grad school in 2006–I was still working full-time–and now triathlon training takes up most of my free time. I take some pretty decent snapshots while I’m out and about, but I think my bigger cameras miss me.
Did the endurance sports come into your life before or after diabetes?
I got into endurance sports in the ’80s when I rode my bike a lot during summer breaks from school and by competing in track, cross-country running, and Nordic skiing. After a bit of a hiatus during college, I had restarted running a bit in the months leading up to my diagnosis. When I was hanging out in the hospital recovering from DKA (diabetic ketoacidosis) and learning how to do all of those diabetes-related things we have to do, my CDE encouraged me to keep running, which is perhaps the best bit of diabetes advice I ever got.
My first night in the hospital with diabetes I was thinking about all of the things that I probably would never be able to do, which was completely disheartening, but here someone was telling me that most of those things were still possible. The next summer (2000) Gary Hall, Jr. was winning Olympic gold medals in the pool while managing type 1 diabetes, and that’s when I really started to see that diabetes wasn’t a deal-breaker. In 2009, after another break when I was in grad school, I bought a bike, and that’s when my athleticism really got going.
Well, a lot had changed in a decade: Team Type 1 (now Team Novo Nordisk) won the Race Across America that summer, the DOC was full of athletes I could connect with, and there were so many better techniques for managing diabetes: insulin pumps and CGMS, in particular. But mostly it was the community that kept me going. In 2011, some of them inspired me to do my first triathlon. I’ve actually just done my 12th — a half-Ironman.
As far as groups go, I’m currently involved with Riding on Insulin, Insulindependence, JDRF’s Ride to Cure Diabetes, and the ADA’s Tour de Cure. I was a big fan of TeamWILD before it closed shop last year. I used a training plan from them when I did my first half-Ironman in 2012, and I learned so much about diabetes and endurance sports. I’m also part of a triathlon club through a local bike shop. Most of my teammates don’t even know I have diabetes! Mostly I’m there for a bit of community while doing workouts. Honestly, I find that I get the most out of personal blogs and Facebook posts written by other athletes with type 1 diabetes. It’s fun to read about their events and see what works for them with respect to diabetes (and what doesn’t). I’ve had the opportunity to meet many of these people, and we have a good time feeling pretty “normal” as we do our thing with diabetes.
I’m really inspired by all of the athletes out there, especially the ones with diabetes, and I try to do the same — a bunch of us are getting together next year to compete in Ironman Wisconsin!
What’s your connection to diabetes technology?
Doing triathlons with diabetes presents some interesting challenges, and it was the main reason that I started device hacking.
Professionally, I’ve been a software engineer in the image processing group at The MathWorks in Natick, Massachusetts, for the last 14 years. Millions of researchers, scientists, and engineers worldwide use our products, including many people working on diabetes therapies and devices. I’m one of them, using MATLAB to create a Medtronic CareLink parser and analysis tools. There’s an enormous hacker/DIY/maker community out there, and I’m excited to see this coming to the DOC. I think we’ve started to see the potential of this movement recently with the Nightscout/CGM in the Cloud projects, which are democratizing diabetes technology and (for better or worse) bypassing regulatory hurdles. Ultimately, I’d like to see a patient-hospital-manufacturer nexus emerge that makes it easier and faster to incorporate the amazing ideas that emerge from patients and hackers into approved medical devices.
Do you have specific ideas about how this tech can help us live better with diabetes?
I actually got started with the hacking to try to understand how to manage my own diabetes better during training and racing. I realized that I had all of the data that I needed in different devices; I just needed a better way to aggregate, visualize, and analyze it.Now I have a system built in MATLAB (a development platform) that integrates data from my Medtronic 530G insulin pump and CGM and OneTouch Ultra meters (via CareLink) and my Garmin GPS devices, which keep track of all of my exercise-related information. It’s amazing how much data is available from these devices: basal rates, insulin doses, carbs, blood glucose meter readings, CGM traces and alarms, infusion set changes, exercise duration and intensity, insulin on board, and even more. It’s pretty amazing… and a bit overwhelming! And definitely under-utilized.
Device manufacturers are great at collecting data, but our tools for processing it and making decisions based on it are still quite rudimentary. My personal hacking projects started with visualizing all of this data together to spot trends and attempting to correlate what’s happened in the past with changes I’ve made — basically using myself for experiments. I have grand visions for the future, but I’m a bit limited in the amount of time I have available, and I’m hamstrung by the inconvenient tools for getting data out of my Medtronic devices. The openness — not to mention the accuracy — of other vendor’s products is very exciting.
Do you think there’s a point where we can have too much diabetes tech?
My results so far have been mixed. I can pretty easily see when things have gone off the rails, but there’s still so much data to make sense out of. So I’m most excited about systems that try to reduce the number of variables that people with diabetes have to think about when making insulin dosing decisions. On one end of the spectrum there’s the Do-It-Yourself Pancreas System (or DIYPS), which remembers a bit of what you’ve done in the past and uses algorithms to come up with some suggestions when you do something similar. This is pretty exciting, and what I’ve been trying to do with exercise.
On the other end of the spectrum — and this is the most promising in my mind — is the two-hormone “bionic pancreas,” which aims to take all of the decision making out of our hands and replace it with the belief that the right things will just happen. As far as devices go, I think that’s the holy grail. Until that’s more widely available, I’m pretty eager to get my hands on some of the more “open” solutions, such as CGM in the Cloud (with Dexcom) so that I can start hacking in a more real-time fashion, instead of waiting hours or days to go back and review some of my experimental data in MATLAB.
What are your hopes for the DiabetesMine Innovation Summit?
Several people had suggested that I attend the Innovation Summit, and after reading about some of the past years, I’m very excited to learn about the different projects that people are working on and to see how I can help out. As grateful as I am for all of the developments that have come out of pharma recently, I’m amazed and inspired by the work being done by the community. I’m hopeful that the people with diabetes and our type 3s can have a good dialogue with (for want of a better term) the establishment about how we can work together as peers to define what we need, learn about advancements in the pipeline, help bring those products and tools to the market faster, and aid in getting the word out to the broader community.
Thanks, Jeff — can’t wait to see you at the Innovation Summit and hear what you think about all this emerging diabetes tech!