Perspective/Type 1 Diabetes
My friend Jan, now 79, has lived with type 1 diabetes since age 22. My son Casey was diagnosed 18 months ago, at age 5. Like other parents, we worry how type 1 could affect his health, longevity, and quality of life. I therefore asked Jan to share his tips for living long and well with diabetes. Patients and parents dream of a cure for type 1, impatient for the next technological advance. But let’s find inspiration in Jan’s perspective on how far technology has come.
At dinner one evening, a very thirsty Jan reached for a soda when his uncle suggested he forego it and schedule a doctor’s appointment. After confirming Jan had type 1, the doctor taught him how to use a syringe to inject insulin, adjust insulin doses as needed and keep insulin cool. But he said nothing about the disease itself or what it entails other than using insulin. Several days later, Jan got so shaky he could barely make it home from work. Calling the doctor, he learned he was having an insulin reaction and should drink juice to raise his blood glucose (BG). When Jan exclaimed this was the first he had heard of hypoglycemia, the doctor responded “You’re a smart guy. I thought you’d figure it out yourself.”
Contrast this negligent instruction with diabetes education today, where newly-diagnosed individuals and their families are taught what to expect and how to manage type 1: count carbohydrates, use electronic devices to measure BG, administer one or more types of insulin, and much more. Back in 1966, there were no nutrition labels, no internet to look up carb content and no way for patients to measure BG. Jan was flying blind. He relied on how he felt physically after eating to adjust future food choices and his four daily insulin doses. There was only one type of insulin and syringes were huge. There was no health insurance, yet insulin was inexpensive and readily available, although the heroin epidemic in Manhattan made it hard to stock up on syringes.
Jan never let diabetes control his life. Despite family protest, he soon left to work in Switzerland and travel through Western Europe, camping out. Before returning to the United States for graduate school, he traveled through Communist Eastern Europe and Turkey too, again camping.
Jan had to manage his BG for 25 years without the BG meters we now take for granted. For the first 15, only tests for glucose in urine were available, at best a lagging indicator of glucose in the blood. They were time-consuming and imprecise. They required waiting to produce fresh urine and then comparing the color appearing on a test strip to a color gradient signifying general levels of glucose: low/normal, plus several grades of high. Strips for testing glucose in the blood from finger sticks became available in the 1980s, but used the same subjective color matching. For Jan, the arrival of digital BG meters in the 1990s, which provide numerical results, revolutionized self-management. The introduction of continuous glucose monitors (CGMs) in the mid-2000s, then insulin pumps integrated with CGMs in the 2010s seemed miraculous.
Jan started wearing a CGM last year. For the first time, he could follow his BG in real time. He says CGM alerts for dangerous BG trends are invaluable, especially while sleeping, and especially as his BG becomes less predictable with time. Over the years, Jan sometimes lost consciousness from severe hypoglycemia. He chuckles about the episode in Florence. He thought he had died when he dimly perceived being carried away by men in Medieval black robes and hoods (EMTs in traditional garb). While fading in and out of consciousness at the Italian hospital, nothing made sense to him, not the language, the faces periodically peering into his, the nuns coming and going. But, then, seeing a cross on the wall, he seriously but comically concluded that he must have gone to heaven. A glucose-starved brain can induce alternate realities in familiar settings too.
Type 1 forced Jan to think about his health and take better care of himself. He stresses that good self-management is indispensable. Build BG monitoring and control into your daily life; make them second nature. Understand how type 1 diabetes and insulin affect the human body, but yours in particular, including how diverse factors affect BG—diet, weight, physical growth, physical activity, the seasons, schedules, and different routines—and, very importantly, how these factors and the body itself change with age. Jan also stresses the value of having regular, not rigid, routines for eating, sleeping, diet, exercise, and other activities. Routine makes BG more predictable. Also prepare for the unexpected, such as traffic jams, by keeping diabetes supplies at hand wherever you go. He carries jelly beans when he takes long walks to raise BG should it unexpectedly plunge. Next, know who to listen to and who to ignore. Well-meaning people who don’t understand diabetes often give bad advice. For Jan, it’s been important to have friends and family whose knowledge and judgment he trusts. Lastly, if you have type 1, live your life.
Just 18 months into Casey’s journey, we have a CGM, an insulin pump, a diabetes medical team, support groups, and other valuable resources that Jan lived years without. Jan shows us that type 1 need not stop anyone from living a long, healthy, and rewarding life.
Thank you, dear friend.