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[IPp] Wisdom of the Elders-Conversations with Long-Term Type 1's

 http://www.diabeteshealth.com/read,1002,2312.htmlWisdom of the
Elders-Conversations with Long-Term Type 1s

Dara Mayers
July 2001

 Karl Smith, a type 1 for 79 of his 85 years, remembers having type 1 diabetes
as a child but not having any insulin with which to treat the disease.

 "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?b' 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

 "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.

Rachel - email @ redacted/jracheln

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