Joining the half century club
St. Joseph's patients mark 50 years living with type 1 diabetes
In the world of diabetes treatment, education and research, they are considered warriors. Diagnosed 50 or more years ago, these patients struggled through the early years of glass syringes, urine sticks to monitor blood sugar, and a general lack of education and knowledge about how to control their condition. In the beginning, many didn't know anyone else with diabetes and felt alone in their journey. They have lived the dramatic changes in care and technology, persevered and today are an inspiration for the current generation of patients living with diabetes, says Dr. Irene Hramiak, chair/chief of the Centre for Diabetes, Endocrinology and Metabolism at St. Joseph's Hospital and a scientist at Lawson Health Research Institute.
At St. Joseph's, patients who reach 50 years since their diagnosis are nominated by their endocrinologist for the Diabetes Half Century Awards presented annually by St. Joseph's and Novo Nordisk Canada Inc. As partners in their care and participants in research, these individuals are celebrated for their contributions to great strides in diabetes care and education, and for their commitment to their health. Each receives a print of London's Banting House to commemorate their achievement. St. Joseph's is the only hospital in Canada that hosts the awards.
Over the past 11 years, about 125 patients have received the awards at a ceremony that takes place during Diabetes Awareness Month in November. During the ceremony, patients are honoured and, with humour and emotion, recount some early memories of their long journey and the support they eventually found from the interdisciplinary care team at St. Joseph's. Here are snippets of just some their stories:
When Jim Palmer was diagnosed with diabetes at age 16, he felt like the only person in the world with the condition. "In my small town, I didn't know another person with diabetes. There was a lack of support and knowledge back then. It was like I was doing it alone." The 67-year-old has taken part in several studies "because I know it makes a difference to the next generation." He now qualifies for the new LONGTIME study that will examine patients who have had type 1diabetes for 50 years or more focusing on complications in the large and small blood vessels.
"Without research, we would still be using glass vials (of insulin), urine sticks to monitor blood sugar and boiling needles," he says. "I participate because I know it makes a difference to the next generation."
Diagnosed at age 5, Cheryle Nother remembers missing out on sleepovers and "breaking a lot of rules" as she got older. "I ate a chocolate bar at age 13 and then sat under a tree prepared to die. That's what I thought would happen. It was Jersey Treasure Milk. I'll never forget it."
Diagnosed with diabetes in Scotland at age 5, Joyce Neill describes the needles in the early days as "darning needles" they were so large. In her youth, "I did the rebellious thing - looking back I'm horrified." But as an adult Neill has been very proactive about her health and has found that becoming a vegan has made a significant difference in her condition.
Diagnosed at only 7 1/2 months of age, Jerry DeZwart has only known life with diabetes. "There wasn't the same kind of monitoring available when I was a kid. I would be out playing road hockey and climbing trees, get home and be having a reaction." Now on a pump, DeZwart said advances in diabetes care technology "has been a huge change in my life."
In 1978, Carol Guest became one of the first patients in the world outside the United Kingdom to use an insulin pump. Under the guidance of pioneer Dr. Wilson Rodger at St. Joseph's, she was part of the earliest pump trials. "The pump then was about the size of a brick. I remember trying to get into the bathtub and balancing this big thing on the edge. Now it's the size of a pager and can be unhooked."
Irene Barker remembers "my mother shaking me awake in the morning because of my sugar lows and having orange juice at my mouth." Diagnosed in Scotland in 1960, "no one told us what to do."
Penny Bodle was the only diabetic in her school, had a tough time getting jobs and remembers staying home while her siblings enjoyed summer camp.
Donald Orr was working in the bush in Labrador when he became aware that something wasn't right. He lost 30 pounds that summer and was drinking water by the bucket. Flown to closest the town, he was diagnosed with diabetes.
When I was diagnosed in 1960 I didn't understand how food was related to insulin.
I was given an 81/2 x 14" sheet of paper with my diet. I didn't like many of the foods on the sheet. I was supposed to eat at 8 am, noon and 5 pm, and drink 6 oz of milk at 10 am and 3 pm every day.
My dad sharpened my needle once a week, and we'd boil my syringe to sterilize it. At first, I just took one injection of beef and pork insulin in the morning. A bottle of U40 insulin cost 70 cents.
One time my doctor called the school nurse to notify her that my blood sugar was low. This was based on blood work that had been drawn about 2 weeks earlier!
I wore an insulin pump in 1980 for about a year. The insulin had to be diluted with distilled water. Finger stick testing at home started about the same time. The meter was large and had to be plugged into the wall outlet. The machine worked by reading the colour on the strip.
I started counting carbohydrates when I tried a pump again in 2008. Now I can eat and take insulin whenever I want and my control is good.