Sugar Surfing: A Doctor’s Guide to Riding the Insulin Wave
Fifty years ago I was diagnosed with type 1 diabetes when I was 9 years old. Almost from the beginning, I began to be told about things I couldn’t do anymore. For example, I couldn’t eat sweets, I couldn’t become an airplane pilot (my dream), I couldn’t become a doctor (yes, I heard that when I applied to medical school). Quietly, I was led to believe my life would not be a long one, and the older I got the more likely I would go blind or die from failing kidneys. My reaction was to secretly believe my diabetes was just a bad dream: a nightmare from which I would soon awaken. But that never happened.
I had a good doctor, not a specialist but a caring pediatrician who did what he thought was in my best interest. He made sure my parents had the information and supplies they needed to keep me alive and well. I would learn later that my parents didn’t know how long I would survive. But they did something that I will forever be grateful for: they let me be me. I didn’t hear what I couldn’t do from them. They were always supportive and encouraging. They also helped me each day. My mom chose to manage my meals the best she knew how, based on the old exchange system. My dad chose to take responsibility for my insulin doses. This was no small feat, since in those days it took 30-45 minutes to prepare a reusable glass syringe and 25 gauge ¾ inch needle. Both of them would help me with my urine sugar checks using a kit that looked like a tiny chemistry set (Clinitest).
I made it through my childhood relatively unscathed by diabetes. But we didn’t have the tools we have today to measure just how well (or poorly) we were actually doing. Ultimately I entered medical school in spite of biases I encountered along the way. Soon afterward, self-blood sugar monitoring became available, then soon after that there were primitive insulin pumps. I was an early adopter. Med School was tough: long hours, irregular schedules and a fair share of stress. I struggled with lows during these years. Some severe and incapacitating. I was still able to overcome these challenges. Over the next several decades came marriage, children and the start of a lifelong career as a pediatric endocrinologist.
As my career and life moved forward my diabetes became more challenging. I was more susceptible to large swings in my blood sugars. My insulin pumps evolved over 35 years, as did my skills at using them. But unexpected low blood sugar became my arch enemy. By the early 2000s I was starting to reconcile myself to the fact that I would probably succumb to a severe low blood sugar before a long term diabetes complication would claim me. And low blood sugars were always frightening to me and those loved ones who I was lucky to have nearby to rescue me.
I worked hard over my career to empower others. Strangely the longer I lived with diabetes the more disempowered I started to feel.
Then, everything changed.
In 2008, I decided to use a continuous glucose monitor. I was not an early adopter. My first continuous glucose monitor (CGM) system was more of a later generation device: The Abbott Navigator. Once I started using it, I was hooked. By then I had met and befriended my good friend Kevin McMahon. We had conducted several projects regarding new diabetes data sharing technologies.
After using my CGM for a few months, I started asking “what if” questions. What if I took small amounts of carbs or insulin and observed the results on the blood glucose (BG) trend line of my sensor? What does exercise really do to my blood sugar trends? And what about stress? I soon became an experiment of one. With my new tool I could explore my diabetes in ways I never thought possible. Soon I realized that I had turned the tables on diabetes—a disease which I had come to believe had a firm grip on me was now doing my bidding. My CGM had allowed me to actually direct the ebb and flow of my blood sugar patterns.
For years I felt like a blind man in a strange world. A CGM gave me the ability to “see” my blood sugar trends. It wasn’t perfect at first, and there was variability in the accuracy of the device. While my new found BG vision might have been myopic, it was better than being unable to see any trend whatsoever. I began to understand the adage “in the land of the blind, the one-eyed man is King.” This ability to visualize trends quickly gave rise to the proactive approach to type 1 diabetes which I would eventually call “Sugar Surfing.” Instead of reacting to a single blood sugar number, I could become proactive based on the direction of change (the trend line) in my blood sugar levels.
Sugar Surfing blends reactive and proactive styles to steer the ebb and flow of blood sugar levels. Over the past several years, my hemoglobin A1C fell to the 5 percent range and has remained there for years. Unexpected severe low blood sugars faded away. Empowerment grew.
I live a busy life as a Surfer. I have a mature pediatric endocrinology practice, direct a pediatric residency training program, recently wrote a book on my new creation and speak nationally and internationally on this topic at patient workshops from London to San Francisco. I also direct one of the largest residential diabetes camping programs in the US, and last year started a free clinic for homeless and uninsured children residing in my hometown.
Diabetes, I’ve got your number now. You hold no power over me anymore. I respect you of course, but now feel free to be and do the things I want to do and on my terms. Sugar Surfing makes this possible.
Stephen Ponder MD, CDE
Creator and Author of Sugar Surfing
Read Why is Diabetes and Life so Stressful? by Adam Brown and an interview with Howard Look in Tidepool — A Comprehensive Platform for Diabetes Management.
