Wisdom of the Elders
"Before insulin came along, it was terrible," says Smith. "You couldn't eat anything except these darn vegetables which they cooked and cooked until there was nothing left of them. And absolutely no bread! It was frightful."
Smith says he stayed on "the starvation diet" until December 24, 1922, when he received his first shot of this new discovery called insulin.
Charles Swanson, 67, of the Black Hills of South Dakota, has had type 1 for 54 years. He recalls using benedict solution, a Bunsen burner and a big metal spoon for BG testing when he was diagnosed in 1947.
"Having type 1 diabetes was like a death sentence," he says.
Marie Kaminez, 55, diagnosed at the age of 18 months, remembers her mother sharpening the needle on a stone and chasing her around the house with it.
"At the time, it was an infinitely thicker needle then you are familiar with today," she says. "When they gave you the shot, you started to howl."
When Kirk Slusher, a type 1 for 43 years, was first diagnosed, he had to boil his needles before every shot.
"My legs were hard as rocks from the shots," says Slusher. "And you only knew your blood sugar about four times per year."
A Long and Healthy Life with Type 1 Diabetes
There are a growing number of people who have lived long, healthy lives with type 1 diabetes. Evelyn Dartis, administrator of the Lilly Medal Program, says Eli Lilly has given out 1,490 50-year awards since 1974.
The Joslin Diabetes Center, which gives out similar awards but does not limit them to people who have used only Lilly insulin, has given out 1,790 awards since 1970.
There are no physical requirements for the awards, but the people interviewed for this story have been selected on the basis of their health. They have all been type 1s for at least 40 years and their stories of long and healthy lives are both instructional and inspirational.
Discipline is the Name of the Game
"I say you have to be a self-disciplined person in order to really accept the things you need to do to control diabetes," says Joseph Bernstein, 78, who, after having type 1 for 51 years, appears to be a model of good health. He is trim and fit, works out three times a week and maintains a regular job.
While good medical help was cited as an important aspect of treatment, most people considered themselves to be their own primary healthcare providers.
"I remember I was talking to a doctor one time," recalls Slusher. "She said, ‘I will treat your diabetes.' I said ‘No you won't. I will treat it and you will give me guidelines and tests, and write me prescriptions so that I can do it.'"
‘The Luck of the Social Draw’
Other commonalties among all the people interviewed for this story are that they are all thin to normal weight, they all take relatively small amounts of insulin and most watch their carbohydrate intake.
While diet, exercise and insulin regimens are different for each person, they all said that their mental attitude toward diabetes and their sense that they could control it was the primary source of their success.
This does not surprise Alan Jacobson, MD, principal investigator of the Diabetes Control and Complications Trial site at the Joslin Diabetes Center and a professor of Psychiatry at Harvard University. Jacobson has had a lot of experience working with people with diabetes over the years. He says that the qualities that make a person with diabetes successful in the long run, "pretty much overlap with the same things that make for a successful person in the rest of life. It's sort of the same game."
Jacobson says high levels of education and access to good health care contribute to healthy diabetic living. Other elements are more nebulous, and potentially more controllable.
"Optimism gets you to do things, pessimism keeps you from doing things," Jacobson says. "The pessimist says, ‘Why bother?’, the optimist says, ‘It'll be good, so I'm gonna try it.’ On average, the person with diabetes who does best, from my experience with meeting many people with diabetes, are those who have a sort of optimistic capability."
Charles Swanson is a living example of this attitude. "I believe it is all about a good mental attitude," he says. "You have to be thankful for the gift of life. Either you can control [diabetes] or it will control you. I never let it stop me."
Leonard Bergman, a type 1 for over 50 years, agrees. "It's all in the psyche," he says.
Slusher says, "It's really the only disease where it's really all in the patient's lap to do it. If you have cancer they'll treat you with drugs or chemotherapy. They'll say, ‘Show up at 3:00 p.m. and we'll treat you.' But if you're diabetic, every minute of every day you have to keep in mind that what you do is going to have an impact on you."
Genes Play a Big Role
Harvey Katzleff, MD, director of the Diabetes Center, chief of endocrinology at the North Shore Hospital on Long Island and president for the eastern region of the American Diabetes Association, says it is not clear to him why some people with diabetes do so well for so many years and some people don't.
"If you make it to the 30-year mark, it's very unlikely that your kidneys will fail, and patients who live a long time don't get kidney failure," says Katzleff. "Blood-glucose control is important, but not the only thing. Genetics and luck play a role."
Sheila Roman, MD, MPH, a diabetes specialist in New York City, says, "Some patients, no matter what they do, seem to do okay, though a small number. They probably have protective genes for some complications."
Most long-term type 1s, however, seem to think that, if anything, genetics would have worked against them and many actually credit diabetes with their long-term health.
"If I had not developed diabetes, I would have continued being overweight and I would have been dead by now," says Clayton Harmon, 81, who has had diabetes for 51 years. "I was one of eight sons and I'm the only one still alive today."
Joe Bernstein has an identical twin brother who does not have diabetes.
"He doesn't look like my twin anymore," says Bernstein. "He weighs about 50 pounds more than I do, and he's not in the greatest shape. He doesn't take care of himself. I credit longevity and good health to diabetes."
‘Healthier Than All My Friends'
Karl Smith thinks his health is a lot better than most people his age because of the way he has lived.
"I've been very careful about most things—particularly the blood sugar," says Smith, adding that he might have some genes that are helpful too. However, Smith has outlived his entire family and attributes the conservative lifestyle of being type 1 to his success.
"I don't go out raising hell all night long, drinking and doing things I shouldn't be doing, like eating binges or anything like that," he says. "I think I've pretty well controlled all of that."
This is not to say, however, that Smith doesn't have a good time.
"I play tennis almost everyday, which I love. I also like to play golf and ride motorcycles. I have fun with those things."
Virginia Bartman, an 80-year-old type 1 who was diagnosed at the age of six puts it most succinctly. "I think I'm healthier since I had type 1 diabetes," she says. "Certainly healthier than all my school friends who are dead now."
Education and Support Groups Help
Of course, all of these sentiments may just be part of the optimism that has helped them live so long with diabetes.
"The optimist says, ‘Yeah, well, I was terrible last week, but next week I will be better, and do something to make it better,'" says Jacobson. "Those people on average will take on challenges and solve them, and diabetes is a challenge to be solved."
Education and support have also played key roles—especially when the going gets rough, which it inevitably does.
Twila Zelmar, who has had diabetes for 59 years, was feeling quite down about her health, which was getting worse each year. She decided to start a support group for people with diabetes in her area. Today, 16 people in her group meet twice a month, coming together to share their struggles.
"I've seen people just give up hope," says Zelmar. "We really need to support and help each other in what we're going through."
Zelmar's group is also politically active, working toward raising money for research.
"Having a support group is very encouraging," she says. "Asking questions and learning what others have done has helped me a lot."
Harmon says he gets "continuing education" by volunteering at hospitals and visiting diabetic patients. "I also say to them, ‘Look at me! I look pretty good for my age.'"
Lynn Chandler, a type 1 for 44 years, also stays educated. "I have stayed in tune with my body."
It is also possible to change one's own mental attitude. Though Jacobson does think that optimism is, to a certain extent, a character trait, there are ways to encourage it in oneself.
"Seek some therapy if you are feeling hopeless," he says. "Seek advice from people you trust as mentors and life advisors. Find an optimistic person who you can relate to and use him or her as a role model. You first have to understand that your pessimism isn't real, it's just your viewpoint. Once you understand that, you will begin to see people who look at the same problem differently and handle it differently."
‘Lucky to Have Diabetes'
If you're feeling low, and looking for an optimistic person on which to model yourself, you might just pick Virginia Bartman, whose attitude toward her disease of 75 years is extraordinary.
"I think it's a good disease," says Bartman. "You look normal, you act almost normal. I think it's a healthy life. The diet is good, insulin is wonderful, the doctors are great, my family has been perfect. I have been so fortunate. I don't think I would have had as healthy a life as I have now, because you have to take care of yourself when you're a diabetic. If I hadn't had diabetes, I probably wouldn't be here. I think we're lucky to have diabetes."
Of course, Bartman has had an unusual experience as a person with diabetes—having no complications after 75 years. Most people with diabetes would be hard pressed to consider themselves "lucky" to have the disease. On the other hand, until there is a cure, it can't hurt to look at the positive things that diabetes, when well controlled, can bring to one's life.
In fact, looking at the brighter side may be just the medicine needed to prolong life and sustain health.
Diagnosed 1926 at the age of six.
25 units of NPH
2 Humalog per day
Tests at least five times per day.
"Since I live alone now, I like to keep my blood sugars a little higher—averaging 150 mg/dl."
8%. "I think it's a little high, but my doctor thinks it's perfect."
Still sticks to basic low-carbohydrate, high-protein and high-fat—the same diet she had when she was young.
"For breakfast I have eight individual corn flakes and a whole lot of milk. I count them. I tested it—I tried 10 corn flakes, and that was too much. So then I eat half a sandwich with iced tea for lunch. For supper I have meat and vegetables and iced tea and very seldom, cookies."
Used to exercise every single day, but now spends all her time in front of the computer.
Had a stroke and went deaf in her right ear.
Diagnosed 1949 at the age of 27.
Humalog, Regular and NPH. Four shots per day, adjusted according to BG levels. Around 20 to 30 units per day.
Tests four to five times per day.
"As I’ve gotten older, I keep it a little higher than I used to. I try to keep it above 100 mg/dl."
Between 6 and 7%
Diet varies a lot. Watches carbs.
Goes to the gym three times per week. Plays golf.
Diagnosed 1957 at the age of nine.
20 to 22 units per day combination NPH and Humalog.
Tests four to six times per day. Average BG is 125.
1,200 to 1,400 calories per day.
Small amount of cardiovascular exercise.
Some foot injuries
Diagnosed 1950 at the age of 30.
Morning 6N, 6H; Lunch 6H; Dinner 8H; Bedtime 11N.
Blood glucose levels
Test four times per day.
Average BG is 125 mg/dl.
Last one was 5.4%. Has kept it below 6% for the last five years.
"I like greens—mustard greens and turnip greens, collards. I eat a lot of vegetables-green beans, peas, salads. I always eat oatmeal for breakfast."
Says he eats according to what his BG levels are.
None currently due to leg injury.
Laser treatment on both eyes.
Takes Vasotec for kidneys—some protein leakage.
Diagnosed 1946 at the age of one.
A.M. Eight units of NPH, sliding scale 2 to 6 Humalog
P.M. Seven units of Humalog
Bedtime Six units of NPH, sliding scale 2 to 6 Humalog
Tests at least five times per day.
"I'm good at 150 and 120 is perfect. When I'm in the 80s and 90s, my family tells me I'm a nasty individual. And then when it goes into the 300s, which it rarely does, I am also a nasty individual." Marie keeps a log and faxes it regularly to her doctor.
Between 6 and 6.5%
"Over the course of the years, I have learned what to eat and what not to eat. I stay away from high carbs. It's mostly instinct now."
"We have an treadmill at home. That's one nasty little piece of equipment. And that's what I use. Or I walk around my block five or six times, a couple of times a week. It's a very large block."
Diagnosed In June of 1958 at the age of five.
Regular and NPH.
Tests two times per day.
"I'm around 115 any time before I eat, so I can be in the normal range. I have insulin reactions almost every day. I think that's good, because it's a guarantee that I'm not too high."
Last one was 6.8%.
"When I eat meals, I will consume 80 grams of carbs, 32 grams of protein and 15 grams of fat. I eat more as necessary to offset the exercise I accomplish."
Tries to integrate exercise into life—does not have separate exercise schedule.
Diagnosed 1947 at the age of 13.
Pump 3.5 years
Tests six to 10 times per day since the late 1980s
BG average: 135
Tries to keep it under 6%.
Watches carbs—avoids high-carb food. Restricts bread intake. Very rarely eats potatoes or pasta.
Moderate amount of walking. Some yoga.
Quadruple-bypass surgery in 1994.