A Half Century with T1: Four Profiles in Courage
Fifty years ago, a diagnosis of Type 1 diabetes meant glass syringes, urine tests, and living with the unknown. Now, many with T1 are living longer and living better for 50 years or more after their diagnosis. Experts attribute their longevity and high quality of life to several key factors.
It’s partly that those who live well with T1 are doing what keeps all people healthy, says Dr. Sheri Colberg, an author and educator with T1.
“The keys to longevity with T1 are the same as they are for everyone: keep moving,” says Dr. Colberg. “Exercise regularly and be active all day long, eat a healthy diet with lots of fiber and minimally processed foods, keep your insulin needs low, manage your stress, and keep a positive attitude towards life.”
Carla Cox, a diabetes educator and American Association of Diabetes Educators blogger, agrees, and emphasizes the importance of being proactive with blood sugar control.
“The key is frequent monitoring and adjusting to those numbers. It doesn’t help if you check your blood sugar all the time if you’re not doing anything with it,” Cox says.
T1 longevity is not all about lifestyle choices; some of it is physiological. That’s the consensus that’s emerging from research being done at the Joslin Diabetes Center, an affiliate of Harvard Medical School. The center honors T1 patients who have managed their diagnosis for 25 years or more with a certificate or medal. Joslin’s researchers have noticed that some 60% of medalists have some residual insulin production, according to research coordinator Stephanie Hastings.
And then there’s the importance of attitude, says Hastings. Joslin medal winners refuse to let diabetes be the defining factor in their lives, she says. How people see themselves helps shape how they take care of themselves, she says.
“They are doing whatever they want to do, despite T1. These people are in their 60s, 70s, sometimes 80s, always super-active, doing things. They have a lot of really great stories,” she says.
Insulin Nation has interviewed 4 individuals who have been living with T1 for 50 years or more. They inspire us with their everyday courage:
Jenny Jukes has never known a life without diabetes. She remembers dealing with diabetes when she was three.
“One of my earliest memories is being strapped to a bed, as I kept pulling out the needle of my drip from my arm,” she says.
Jukes, who lives in the United Kingdom, has been treated for retinopathy, but has experienced few other T1-related complications. She credits her health to her mother’s good care. She says her mother became so attuned to T1 that she could detect a hypoglycemic episode by the dilation of her daughter’s pupils.
“Mum was amazing. Her attitude wasn’t to pamper,” she said. “Mum also realized different carbs affected me differently – way ahead of her time – and fed me accordingly. Less rice and mash, more bread and porridge.”
Jukes thinks advances in diabetes technology are “amazing”, particularly when it comes to insulin-injecting technology. Injection-time used to be a family event, where her sister was forced to hold her down while her mother injected her.
“Thin needles on disposable syringes changed our lives,” she says.
Family support and attention to carbohydrate intake are Jukes’ keys to longevity. Her mother portioned her food on a smaller plate so she wouldn’t feel as though she were eating less than her family members. Nor were her injections treated as a dirty little secret. When she needed an injection when the family was out and about, they took care of it without any fuss, she says. It made her learn to accept her diabetes.
“My view is I have diabetes, and it’s a small part of who I am,” says Jukes. “Simply treat it with respect and live your life.”
“It was a wing and a prayer,” Alice Strack says of her early experience with T1. “I was a college girl who got thirsty. I mean thirsty like you never knew thirst before in your life. Water would not even penetrate.”
Strack was diagnosed on February 7, 1957, when she was a sophomore at Douglass College. When she gave a urine sample at the college infirmary, it turned a brilliant orange, indicating very high blood sugar. She was hospitalized for 11 days.
“I met a nun in the hallway and she said to me, ‘What’s wrong with you?’ And I said, ‘I have diabetes’” Strack recalls. “And she said, ‘Oh, isn’t that wonderful!…Now you have your cross.’”
The nun’s remark inspired Strack to press on to finish school despite the medical challenges to graduate. That persistence also was necessary to help her deal with the many hurdles she had to face in her diabetes care.
“I can’t believe I’m still alive,” she says. “I had a glass syringe, I had to boil the syringe, and I had a needle that was like a crowbar. I carried my glass syringe and my needle in an olive jar with a cotton piece at the bottom, and that’s how I operated.”
Strack appreciates the new technology available for diabetes, especially the improvements in blood tests. Other than receiving regular Lantus injections in her retina and a recent surgery to repair a macular hole, Strack has been free of diabetes-related complications. She attributes her longevity and high quality of life to staying active and having a positive attitude.
Strack has the distinction of being one of a small group of T1 patients with some functioning beta cells. At a Joslin Diabetes Center event honoring medalists, Strack also had a unique opportunity to contribute to research when she met with Dr. George L. King, the center’s research director.
“I said, ‘I have a macular hole, I have to have my vitreous removed,’” she says. “And he said, ‘Oh, we want your vitreous!’”
She was more than happy to oblige.
Barbara Susan Thomas
Barbara Susan Thomas says the key to longevity with T1 for her has been “being a perfectionist and meticulous in my own care.”
Thomas grew up in Oak Ridge, Tennessee, and was diagnosed with T1 on April 17, 1963 when she was 9 years old. It took some time for her to get the proper diagnosis. Before that day, her mother had taken her to the doctor several times, but her concerns were always dismissed as “just growing.” Luckily, not everyone in her family agreed.
“My great aunt had a child in her schoolroom with diabetes and thought I had the symptoms. Monday, Mom took me to the doctor and told him to check for diabetes. I was in the hospital the next day,” she says.
The T1 diagnosis changed Thomas’ whole life. She had to check her urine for sugars and get insulin injections twice a day, eat and exercise on a regimented schedule and carry a snack with her at all times.
“It was hard to spend the night with friends and be a normal kid,” she says.
Advances in diabetes management over the years have made Thomas’ life much less regimented. Home blood sugar testing was a game-changer, her insulin pump allows her to exercise and eat when she wants, and needle technology has improved tremendously.
“Disposable needles made shots easy and less painful than boiling glass syringes and using dull large metal needles,” she says.
Thomas has lived relatively free of T1 complications and has recently retired after 30 years working in the medical records department of a Knoxville, Tennessee medical center. She stays healthy and happy by learning what she can and can’t control about her diabetes, and focusing meticulously on what she can.
“I live and breathe diabetes,” she says.
Dr. Wesley Wilson
Dr. Wesley Wilson was in his second year of medical school at the University of Washington when his wife, a nurse, noticed something was wrong.
“She said you’ve been drinking an awful lot of water and going to the bathroom an awful lot, you ought to have things looked at,” he says.
When he finally went to the doctor’s, his blood sugar was as high as 600, he says. An endocrinology fellow in student health services got him started on insulin, but self-monitoring was difficult for people with diabetes at the time. Dr. Wilson says the prevailing attitude was that blood sugar control made no difference, aside from making sure you avoided hypoglycemia. Blood tests weren’t available, and urine tests were considered practically useless.
“There was no way you could check your blood sugar,” he remembers. “The only way you could tell if your blood sugar was too low was to get shaky and sweaty.”
Dr. Wilson studied diabetes as part of his pathology curriculum after his diagnosis. After graduating in 1959, he did a rotating internship at Cincinnati General Hospital, and moved on to a residency in internal medicine at University of Oregon. His wife, who was working as an OB nurse, told Wilson about the Portland Diabetes Clinic, which worked with pregnant mothers with T1. He stayed in the hospital for 2 weeks and learned how to take control of his diabetes.
“They gave me the ‘standard sales talk,’” he says. “Learn how to estimate foods, carbohydrates…the need to get regular exercise. I think it made a big difference,” he says.
Dr. Wilson, who now enjoys an active retirement in Mesquite, Nevada, still heeds the lessons he learned decades ago. Now on pump therapy, he takes his dogs for an hour walk twice a day. Although Wilson says that while hypoglycemia associated with exercise has been “a hassle,” he credits his glucose sensor with helping him avoid extreme hypoglycemia. He received a 50-year medal from the Joslin Center for Diabetes in 2009.
“It was good to see so many people doing so well,” he says, “I feel I’ve been able to do most of the things I’ve wanted to do pretty well. That’s kind of the story.”
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