Long Live Living Long
Diabetes Forecast is celebrating its 60th birthday by talking to people who have had diabetes for 60 years—or longer. Here are their stories.
Years with diabetes: 64
Allen Trask celebrated his ninth birthday like most little boys: with kid-approved snacks and thick slices of sugary cake. The next day, he was in the hospital.
"I remember a nurse entering the room with a hypodermic syringe, and she gave me what I presume was one full cc of insulin. Something less than two hours later, a nurse again entered the room with another loaded syringe and gave me another cc of insulin," Trask says. That was 64 years ago.
Over that span of time, Trask has marveled at the impact modern technology has on his diabetes control. For the first 30 years of treating his diabetes, Trask relied on urine tests and Regular insulin. It wasn't until 1974 that he could analyze his glucose levels using a blood glucose monitor, and thanks to the device he started taking accurate glucose readings a half dozen times a day. Then, when he turned 65, Trask joined Medicare and embraced yet another form of technology. "I've had less than mediocre health insurance all my life because no insurance would consider issuing health insurance to a diabetic. As soon as I turned 65, I got a pump. It is a great improvement from injections," he says.
The Worland, Wyo., resident has lived mainly complication free (he had triple bypass heart surgery two decades ago and now has hearing impairment), and he stays healthy by walking between 6 and 8 miles a day-to the post office and his favorite coffee shop in the morning and another stroll in the afternoon. Trask knows he's lucky; two of his grandmother's brothers died because diabetes treatment was unknown at the time. And he's helping others realize they, too, can live a healthy life with diabetes. After joining a diabetic support group, Trask started speaking to a crowd of parents with type 1 children. "Talking to that group of parents with diabetic kids, they would get hope because they knew there was hope for them living at least through my age," he says.
Looking back at more than a half century with diabetes, Trask chuckles at the early diagnosis his doctor gave him and his younger brother, who also had type 1. "The doctor that diagnosed both of us told us that we'd never see our 30th birthdays," he says. "[When we were older], we'd laugh because my brother and I both outlived that doctor."
Years with diabetes: 70
Al Lewis leaves his home every day at 6:30 in the morning and bikes to his office at the University of British Columbia where he works as a professor in the Oceanography department. Years ago, he would have topped off a week of daily bike riding with a swimming race, but since a back injury sidelined him two years ago he hasn't been able to compete. Still, the injury hasn't squashed his competitive spirit. In fact, the Vancouver resident partly credits his good health to this competitive drive-both during exercise and in managing his type 1 diabetes. "If you're competitive with yourself, you're going to try and improve the nature of what you're doing," he says. Since he was diagnosed at age 4, Lewis has pushed himself to best control his diabetes-even when blood glucose testing was unheard of and insulin was nothing but Regular.
Looking back, he cites the discovery of the A1C test and the invention of blood glucose monitors as landmark developments that aided his diabetes control. More recently, Lewis says another tool has changed his life: the pump, a waterproof Animas that he use while swimming. "I made a decision that if it was either competitive swimming or the pump, it would be the pump," he says, thankful that he didn't have to choose between the two. "It's all the difference in the world."
Lewis also credits his 70 complication-free years with diabetes to the support he had from his parents and the encouragement he gets from his wife. "The open-minded and helpful attitude that should go with both parties in a marriage or relationship is critical to the success not only of the relationship but also the diabetic profile of the type 1," he says. "After 51 years of marriage to a remarkable individual, I have been extremely fortunate."
And though Lewis has put his competitive swimming hobby on hold, he's convinced he'll resume the sport shortly. "I'll get back in the water again. Competition is absolutely critical," he says. "The individual [with diabetes] can achieve almost anything that a person without diabetes can achieve. It takes a lot of effort to do it, but that effort is no different than any other effort."
Years with diabetes: 64
Years ago, Lynn Wickwire was a member of a national advisory board on diabetes, proclaiming to Congress the need greater diabetes research. "I used to badger people and say, 'You need to study people who've had diabetes for a long time,'" he says. Now he's participating in one of the studies he advocated for: a look into why some people with diabetes live long and relatively complication free. His take: "It is genetic, but it also is this mindset ... I'm a glass is half full kind of guy, and I hold the belief there's nothing I can't do."
Still, when he was first diagnosed with type 1 diabetes by doctors at Yale New Haven Hospital, Wickwire was apprehensive. "I remember having this feeling of: Would I get to be 21? Would I live to that?" After a stint at a Joslin Diabetes Center's diabetes summer camp, Wickwire gained the knowledge he needed to control his diabetes. Despite the use of urine tests and painful syringes, Wickwire stuck to a program of tight control. "You used to have one or two needles and you'd sharpen them when they were dull. You'd sharpen them with a stone," he says. "I remember taking a shot and the needle was so dull it bounced off my skin. And you'd have to use blunt force. People today have no idea!"
Today, Wickwire-a Joslin 50-year medalist who lives in Concord, Mass.-maintains that same control, exhibiting discipline in his eating and obedience to an exercise routine that includes trips to the gym four days a week and golfing in his spare time. "I don't care what's going on, I'm going to exercise come hell or high water," he says. "Tight control matters-diet, exercise, and insulin. You have to constantly manage this disease. This is part of your life so get on with it."
Years with diabetes: 62
"I hadn't really grown properly," says Joseph Bumsted, one of Joslin Diabetes Center's 50-year medalists. "At 10, I was the tallest kid in my class. By 15, I was short. My father said, 'We have to find out what is wrong with you.'" After a trip to the hospital, Bumsted was diagnosed with type 1 diabetes. With treatment, he started to gain weight and grew 5 inches that year.
Still, Bumsted was a teen and admittedly lax in his diabetes management. "When I was in school and in college, I wasn't as good as I should have been. Of course, we didn't have the equipment. Maybe I'm lucky. The development of the care of diabetes has done a good job. It got me to 62 years."
As he got older, Bumsted-with the help of innovations like A1C testing and blood glucose monitors-gained greater control over his diabetes. Now the Lancaster, Pa., resident tests his blood glucose four to five times a day, has his A1C down to 7 or 7.2, and walks 2 to 3 miles between two and four times a week.
Bumsted, who doesn't have any diabetes-related complications, says he hopes the newly diagnosed understand that diabetes doesn't have to slow you down. "Diabetes is not a curse on your life at all," he says, pointing to his lifestyle of frequent travels (he just returned from a trip to Costa Rica and South America and is prepping for a visit to France) as proof. "If you do it sensibly you can live a very normal life."
Years with diabetes: 67
When LaDonna Shoengarth's mother brought her to the family physician she got some shocking news: "They told me I'd never live to be a teenager," Shoengarth says. She was diagnosed with type 1 diabetes, a hopeless disease, according to the small-town North Dakota doctor she first visited.
After moving out west-near Portland, Ore., where doctors were on the cutting-edge of medicine and knew she could live if she managed her diabetes-Shoengarth started injecting insulin and following a diabetes-friendly diet. "I remember my mom weighing every little thing," she says. "She'd weigh my sandwich, and if it was too heavy she'd cut a corner off." Her mother also watched for hypoglycemic episodes, something made more frequent with the insulin of the day. "I remember waking up and my legs felt like rubber. And I remember screaming," says Shoengarth. "My mother would come in with orange juice. It was very, very hard to regulate protamine zinc."
Sixty-seven years after her diagnosis, the Joslin 50-year medalist is living an active and relatively complication-free life. Though she underwent quadruple bypass surgery in 2002, the procedure didn't sideline her, and today she still works out three times a week. "I do that faithfully," she says. "The first week I thought, Are you crazy? But after I got going, I don't think I could do without it."
Shoengarth credits her long life to the support of others. She attends diabetes clinics and support groups in her area, used to regularly speak at a support group, and even wrote a diabetes cookbook for her hospital. "They say knowledge is power. Getting involved and going to one of these clinics is important," she says. "It was helpful for me to share that with others."
Years with diabetes: 63
Just don't eat sugar. That was the only rule doctors said Richard Vaughn must live by to control his type 1 diabetes. So for years Vaughn stayed away from all sweets. But he lived off of carbs. "I ate hundreds of carbs every day. From the mid-'40s to the mid-'80s, I ran high blood sugar."
After years of eating a high-carb diet, Vaughn's life turned around when a doctor told him about carbohydrates and their affect on blood sugar. "My control was just awful. But I didn't know it was awful," he says. "Things really turned around for me after 40 years of not knowing [about carbohydrate counting]. I'm very lucky to be alive to have gone that long and not suffered from eating all of those carbs."
Despite complications-borderline hyperfiltration of the kidneys, the beginnings of neuropathy in his feet, arthritis, cataracts, hearing damage, and the first signs of retinopathy-Vaughn says he is living healthy. "I truly feel I am blessed and that I have very good health. There are very many nondiabetics who have health problems much worse than mine," he says. He uses a MiniMed 522 pump and Humalog insulin, and has his A1C down to 6. He walks 3 miles a day in his upstate New York town and still practices his love of carpentry.
For Vaughn, the new millennium has brought a welcomed awareness about the disease. "When I was very young, we didn't know many diabetics. My relatives had a hard time relating to it. Since the doctors didn't know much about it, my parents didn't either," he says. "Now it's much more open. My relatives talk openly about it. I know other diabetics."
And thanks to a childhood without the tools necessary for blood glucose control, Vaughn appreciates today's management tools. "With good control [people with diabetes] do have a much better chance of leading a long, healthy life with diabetes-if they use the modern day conveniences and technology," he says.
Years with diabetes: 81
Everett Hartmann was born at just the right time. The year before his birth, Dr. Frederick Banting created the first insulin, and people were amazed at how the injections could extend the life of someone with diabetes. But the treatment was new, and not everyone understood the drug's effect. That's why, when he was 16, Hartmann was urged by a prominent physician to drop out of high school because he wouldn't be living much longer. Then, amid the spread of charlatans claiming to hold the cure for diabetes, Hartmann visited a chiropractor who attempted to heal his diabetes by cutting out insulin. After five days, Hartmann was weak but back on insulin.
"I've had so many bad things happen so it's strange that I've lived so long," he says, looking back more than eight decades. Part of the reason Hartmann has been so successful in managing his diabetes is the control he's gained through modern technology. "The meters have been a miracle to test your blood sugars. The other miracle has been adding the carbohydrate and fat values on food," he says. "Before that, it was kind of a guess by trial and error. You had canned food with added sugars in them but you didn't know that."
Today, the Marlboro, Mass., resident is able to check his blood sugar eight to 10 times a day and inject Lantus insulin or Humalog when needed. After 81 years, Hartmann has a few complications-he is legally blind and still recovering from a bout of pneumonia that left him hospitalized for 88 days-but is looking forward to the day when he can resume his hobby of square dancing with his wife.
The significance of hitting the 81-year milestone isn't lost on Hartmann. "I'm one of the few survivors who have lived that long on insulin," he says, mentioning the 75-year medal (the highest honor the center has for those living long with the disease) he received from Joslin six years ago. "Now that I'm 81, they're puzzled as to what to do for me," he laughs.
Years with diabetes: 83
Years with diabetes: 76
Robert and Gerald Cleveland may be the longest living siblings with diabetes. The brothers, 88 and 92 respectively, have each lived for more than half a century with diabetes. Robert, the younger of the two, was diagnosed at the age of five and grew up with a strict diet that oftentimes required his mother to weight his food to get the right portions. Seven years after Robert started urine testing and taking shots of the one available type of insulin, his older brother Gerald-then age 16-was diagnosed with type 1.
Growing up in the early 1930s with diabetes was difficult, particularly because diabetes wasn't an out-in-the-open disease. "It was rather hard," says Robert. "Even in my teen years at school nobody knew I was diabetic. It was sort of a stigma. You just never heard of anybody being a diabetic." The sentiments carried over to the workplace, and Robert says he had a hard time getting a job when he mentioned diabetes on an application.
But as the brothers got older the public's awareness increased-and so did diabetes technology. "The materials that they have, the insulin they have, and the tools they have for blood sugar have improved," says Gerald. "When we started out, the needles were two inches long and you needed to use a wet stone to sharpen them. There's a big difference in the quality." Robert agrees. "It's really been quite something to see the advancements that have been made," he says, mentioning blood glucose testing and new forms of insulin as important discoveries.
Life hasn't been without its complications: Robert has had two heart attacks and has had four toes amputated due to neuropathy; Gerald most recently had a leg amputated because of his neuropathy. But the two look at their life as a blessing. And at age 88 Robert continues to get exercise daily by riding a stationary bike in his home in Syracuse, N.Y. "Exercise is definitely the best thing a diabetic can get involved in," he says. "It doesn't matter what you do, whether it's hiking or biking. If you're moving your body, it's great."
Thanks to their mother, who instilled in them the meticulous management plan that's helped them live so long, the brothers are somewhat of a national icon in the world of diabetes. "With our longevity, we became kind of notorious. We were on the front of the Sunday New York Times," says Gerald, who, along with his younger brother, received a medal from the Joslin Diabetes Center for his accomplishment. "People didn't just live to be even 50 years old. If you lived to be 50, you lived a pretty long life. My brother and I have fooled everybody-including ourselves. We've been very fortunate," says Robert. "I'm shooting for 100."
Years with diabetes: 65
Barbara MacDonald's mother learned to give insulin shots like many parents of young children with diabetes: by sticking a fat orange with a needle. "The first time she went to give me a shot the needle bent," says MacDonald, remembering the thick glass syringes that had to be boiled and stored in a jar of alcohol. Diabetes treatment was a more complicated and longer process in the early 1940s and 50s, when MacDonald would weight her food before eating and test her glucose levels with urine. "We used tubes-drop the urine in there and drop the tabs in," she says of the more complicated process that preceded blood glucose testing on handheld monitors.
MacDonald has embraced modern technology, wearing a MiniMed Paradigm pump for the past six years. "I can eat more things. I have better control of the insulin," she says of the gadget she calls the most helpful recent innovation. She also mentions the invention of sugar-free foods as important in her diabetes management. "Back then was kind of hard because there weren't things like diet soda," MacDonald says. "When I was dating, I had to learn to drink coffee because it was the only thing I could drink." But perhaps most important of all, she says, was the support she received from her family. "I was encouraged to do what I wanted to do. I was in the band. I wasn't babied a lot," she says.
Though the Akrin, Pa., resident has had a few complications, such as losing three toes to neuropathy and having triple bypass surgery, she's positive about the success she's had with diabetes. As for others with fewer years behind them? "I hope they won't be afraid or feel they're less because they have it. I think that's something I had to fight. I felt that I was less than everybody else," she says. But that feeling didn't hold her back: "I did anything a normal kid would do. Not much stopped me," MacDonald says.