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The following is an excerpt from the introduction of 50 Secrets of Longest Living People with Diabetes:
A SHORT TALE ABOUT TWO LONG DIABETIC LIVES
Few people so far have managed as well or as long as the Cleveland brothers of Syracuse, New York, who have over 157 years of living with diabetes between them. Robert "Bob" Cleveland, reaching his 87th birthday in March of 2007, has lived longer with diabetes than almost anyone else so far —82 years— since the age of 5, just a few years after the discovery of insulin in 1921. Even more remarkable, though, is the fact that he is not the sole member of his family who has survived a remarkably long time with diabetes. His older brother, Gerald, who turned 91 years old in January, has also had type 1 diabetes since childhood — only slightly less long at 75 years, since the age of 16. Experts say that they know of no other person who has lived to be as old as Gerald after having had type 1 diabetes most of his life.
While inheriting a good set of family genes undoubtedly has something to do with the extended longevity of these brothers, there is far more to it than just that. Scientists tracking the brothers and other long-living diabetes survivors say that while these remarkable individuals almost certainly have some genetic advantages, what has helped them just as much are their underlying behaviors in controlling their disease: vigilance, hard work, self-sacrifice, and determination. Both brothers have meticulously kept track of their blood glucose readings, insulin doses, diet, and exercise on a daily basis for most of their diabetic years.
In their early lives with diabetes, times were quite different, and all they could really do at that time was to be vigilant and hope for the best. The Clevelands have actually lived most of their lives in what we often refer to as the "dark ages" of diabetes care (including decades of even "darker" years than both of us have lived through). Before the early 1980s, almost no one had access to the modern tools of diabetes care, like home blood glucose monitors and synthetic human insulins, to help optimize control of blood sugars. The expected outcomes of diabetes back then included amputations, blindness, kidney failure, and heart disease, not to mention a severely shortened life span.
The Cleveland brothers were lucky to develop diabetes just late enough to have insulin commercially available and be able to survive those early years and many, many more. At the time that they were born (1916 and 1920), type 1 diabetes was still a death sentence within weeks or months in most cases (even on a "starvation" diet with limited carbohydrate and food intake) because insulin was not discovered until 1921, and it was not widely available commercially until 1922 to 1923, mostly in the larger suburban areas. Likewise, although type 2 diabetes could often be controlled with diet and exercise, it also usually led to years of debilitating illness and a shortened life expectancy. Just a few years after the brothers' arrival into the world, however, scientists at the University of Toronto isolated insulin in a form that was effective and safe enough for human use (although far from optimal), and then Eli Lilly & Company began to mass-produce it for the first time by 1922. Although insulin's discovery kept the 5-year-old Gerald from dying soon after his diagnosis in 1925, it didn't change the fact that he had a difficult road with diabetes ahead of him. Admittedly, controlling diabetes was hard and painful work back in the early decades of insulin therapy, and the good control of today was simply not possible to achieve like it is nowadays.
In the early years, insulin was made from pancreases of pigs and cows and was so impure that the doses needed were many times larger than typical ones today. What's more, the insulin's strength was often inconsistent. Even when the product became purer and more predictable, some people suffered serious adverse reactions to it. The insulins were also only short-acting ones that had to be given frequently to cover both meals and basal insulin needs. Moreover, people using these insulins did not have any way to measure their actual blood glucose levels, and as a result, they often suffered from a roller-coaster ride of damaging blood sugar highs and dangerous lows. Until the development in 1936 of a longer-acting insulin (PZI) that stabilized insulin levels throughout the day and night, doctors advised patients to interrupt their sleep to inject themselves rather than let their sugar levels climb through the night from lack of insulin. Human synthetic insulins were not available until Lilly got FDA approval for the first one (Humulin) in 1982.
Even up until about twenty-five years ago (almost six decades into Bob Cleveland's time with diabetes), the only tool people had to use at home to get some feedback on their blood sugar levels was an antiquated method of testing urine for glucose, which was notoriously inaccurate. For decades, the Clevelands and millions of other people with diabetes (including both Dr. Sheri and Dr. Steve) caught their urine in cups and then added a chemical reactant to a certain amount of urine diluted with water that turned it various colors depending on the amount of sugar in it, running the gamut from dark blue (indicating sugar-free urine) to bright orange for the highest concentration of sugar that could be measured.
Of course, this method was still a more accurate technique for determining blood sugar levels than was available in even earlier times. In the second century AD, during Greek times, the name "diabetes," meaning "siphon," was adopted to describe patients with great thirst and excessive urination, and in the seventeenth century, the term "mellitus" (meaning "like honey") was added to describe the sweet smell of their sugar-filled urine. Reportedly, physicians back in those days tasted urine for sugar content to diagnose the disease, but we're sure that it wasn't an accurate way to measure the actual quantity present!
Being aggressive about controlling diabetes back in the Cleveland brothers' early years meant running a serious risk of taking too much insulin, which could easily have resulted in a hypoglycemic coma and early death. The alternative, though, was to let their blood glucose levels stay higher than normal, which over many years could lead to damage and the potential for many diabetic complications. We're happy to report, however, that against these immense odds, both of the Cleveland brothers have had successful careers, long marriages, children, grandchildren, and great-grandchildren—with truly a minimum of diabetes-related health problems. In fact, 91-year-old Gerald believes that he has lived as long as he has so he can help inspire others with the disease. "My main reason to stay alive is to prove to young people there's a way to live with diabetes, to live well," he says.
Now, as diabetes poses a rapidly rising threat to the health of so many Americans and others worldwide, the remarkable lives of these brothers offer the ultimate diabetic success story, giving all of us hope that living a long and healthy life with diabetes is a real possibility for everyone. Thankfully, long gone are the days when diabetic complications and a shortened life span were a foregone conclusion, a sentence that was handed down along with the diagnosis. The Clevelands have lived long and generally healthy lives in part through extraordinary discipline in diet, exercise, and monitoring of their diabetes, along with a very positive outlook on life.
The discipline involved in living well for so long has not always been easy. As Bob admits, "I never had any sweets as a child—never." Even to this day, his older brother Gerald keeps meticulous logs of his insulin doses and blood sugar readings, tests his sugars seven or more times a day, avoids desserts and rapidly absorbed starches, exercises, and stays thin. Gerald is still a compulsive reader of food ingredient labels, so he knows exactly what is going into his body and how much insulin it's going to take. Both brothers still recognize the importance of their diet and daily exercise in living well. At 87, Bob is still an avid cyclist, often biking twenty or more miles outdoors, while Gerald regularly attends exercise classes and does daily exercises with five-pound weights. Largely due to their extraordinary diligence, the brothers' lives have been even longer than the average life span for most people and remarkably free of any serious diabetic complications.
Both of the Clevelands have developed some of the circulatory and nerve problems in the feet that are so common to people with diabetes, but just in recent years (after a very long time with diabetes and no access to blood glucose meters during most of their lives). Gerald has also undergone several operations for "trigger finger," a condition most prevalent in people with diabetes that causes curved fingers that can't be unbent without surgery. Nevertheless, these complications are relatively minor, and both continue to make a point of meeting with younger people with diabetes, giving them hope and encouragement. "It hasn't been easy," Gerald says, "but I've had a terrific life."
Allison's recent blog about "The Cool Kids" who seem to be the group of people who are always invited to conferences and meetups all over the country reminded me that each one of us has a distinct voice, viewpoint, opinion, and passion. Put all these voices together and we have a choir. Instead of sopranos, alti, tenors, and bassi, we have type 1s, type 2s, LADAs, MODYs, PoCWDs, type 3s, and assorted...
dLife's Sex & Intimacy Content is contributed & moderated by
Janis Roszler MSFT, RD, CDE, LDN
Janis Roszler, MSFT, RD, CDE, LD/N is the American Association of Diabetes Educators' 2008-2009 Diabetes Educator of the Year. She is a certified diabetes educator, marriage and family therapist, and registered dietitian. Her books include Sex and Diabetes (ADA) Diabetes on your OWN Terms (Marlowe & Co) and The Secrets of Living and Loving with Diabetes (Surrey books).
Donna Rice MSW, BSN, RN, CDE
Donna Rice MBA,RN,CDE,FAADE is the 2007 Past President of the American Association of Diabetes Educators. She is a registered nurse, diabetes educator and has developed numerous educational programs on sexual health and wellness. She is the co-author of Sex and Diabetes (ADA) and Diabetes and Erectile Dysfunction - A Quick ‘n' Easy Handbook For the Diabetes Educator (Bella Vita). Her newest publication is a children's book, The Magic is Me (Searchlight Press).