Living with diabetes still a challenge

Insulin pump peek
Duncan Stevens, 4, peeks at his insulin pump at the University of Minnesota Medical Center, Fairview in Minneapolis, Minn., Dec. 8, 2011.
MPR Photo/Jeffrey Thompson

Mary Miller was diagnosed with diabetes in 1943, and even though she was just 7 years old, she still recalls what it felt like sitting in the doctor's office with her mother that day.

"I remember this awful sense of silence and sadness," said Miller, 76, of Minneapolis. "And then I remember being in the hospital and having to have shots."

Miller was lucky. Insulin had been discovered more than 20 years earlier, so her diagnosis wasn't an automatic death sentence. But in the early days of insulin therapy, it was nearly impossible to get the dose just right. She often received too much insulin, which caused her blood sugar to drop so low that she couldn't wake up in the morning.

ADVANCES IN DIABETES TREATMENT

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Blood tests now allow Miller to track her sugar levels more precisely. Although insulin pumps made it simple to treat her Type 1 diabetes, she didn't like having a device connected to her body and prefers to give herself insulin shots several times a day.

While there's very little anyone can do to prevent Type 1 diabetes, there is a lot that people can do to prevent Type 2 diabetes, which accounts for 90 percent of cases in the United States.

Living with diabetes
Mary Miller and her husband Don Miller exercise at their apartment complex in Minneapolis, Minn., Dec. 9, 2011. Mary was diagnosed with Type 1 diabetes at 7 years old and has been managing the disease for 68 years.
MPR Photo/Jeffrey Thompson

People can have genetic susceptibilities that predispose them to Type 2 diabetes, but obesity and inactivity can unmask the condition much earlier in a person's life.

Half of all Minnesotans with diabetes are obese, State Health Department officials say. In fact, much of the growth in diabetes the last 15 years in Minnesota has been among Type 2 diabetics.

Endel Kallas of Minneapolis was diagnosed with Type 2 diabetes in his early 30s. He lived in Canada at the time, and every week traveled extensively for a technology-related job for the Canadian Pacific railroad. Most of his food came from restaurants. His favorite meal was barbequed ribs. At his heaviest, he weighed 330 pounds.

Kallas, 58, has felt judged many times by doctors and even some family members who thought he alone brought on his diabetes.

"The perception was, because I was perhaps unusually young for type 2, that it was somehow my fault," he said.

Kallas acknowledges that he didn't take good care of himself and that likely triggered his diabetes much earlier in life.

Diabetes under control
Endel Kallas, 58, of Minneapolis switched from a traveling sales job to a more flexible career as an education consultant so he could take care of his diabetes properly. He now has time to work out every day and prepare healthy meals. After years of ignoring his disease, his diabetes is finally well controlled. He is shown here during a visit to the University of Minnesota on Dec. 8, 2011.
MPR Photo/Lorna Benson

For a long time, he didn't work on improving his health because he was more consumed with the way he felt society was treating him.

"You can have people tell you whatever they want, but unless you are receptive inside it's not going to register. And it's not going to lead to the kind of profound change at the fundamental level which is required," Kallas said.

For many years his diabetes wasn't well controlled. About the time he turned 50, Kallas was finally ready to make some changes in his life.

He quit smoking. He started exercising every day and he lost 70 pounds. He also switched careers -- setting up his own education consulting business.

"Actually I've made a choice to find work that doesn't constrain me," Kallas said. "It has allowed me to develop an exercise regimen and a dietary discipline, and they all go hand-in-hand. It's almost like a paradigm change. And I really feel like I've kind of rewired myself. I look at things very differently. But that was a very profound change that a lot of people can't afford to make."

Today, Kallas' diabetes is well controlled. Recently he even went off some of his diabetes medications. So far he hasn't experienced any complications related to his disease, although he knows he will become more vulnerable to complications as he ages.

Young diabetic patient
Camille Austad checks the insulin pump of her son Oscar Austad, 2, at the University of Minnesota Medical Center, Fairview in Minneapolis, Minn., Dec. 8, 2011. Oscar was 15 months old when he was diagnosed with type 1 diabetes.
MPR Photo/Jeffrey Thompson

In some ways Kallas is fortunate. He made it to his 30s before he was diagnosed with diabetes.

Oscar Austad was just a little over a year old when he was diagnosed. That was nine months ago.

Oscar must wear an insulin pump in a black fanny pack around his waist. The pump delivers a continuous, low dose of insulin through a small tube that connects to an even smaller needle inserted into his thigh. His parents say Oscar is no longer bothered by the daily needle pokes that are an unavoidable part of his treatment.

But during a recent visit to a University of Minnesota diabetes clinic, the toddler didn't feel like cooperating with his nurse when she wanted to check his blood sugar level. When she poked his finger to obtain a blood sample, he cried.

Even with his insulin pump working constantly in the background, it's a lot of work to monitor Oscar's diabetes.

His parents, Camille and Allen Austad of North Branch, Minn., wake up every night to check their son's blood sugar while he's sleeping because growing children are especially susceptible to fluctuating glucose levels. They're afraid that if his blood sugar drops too low, he could die in his sleep.

Diabetes doctor
Dr. Toni Moran chats with the Austad family during an appointment at the University of Minnesota Medical Center, Fairview in Minneapolis, Minn., Dec. 8, 2011.
MPR Photo/Jeffrey Thompson

Camille Austad shares her experiences with parents on a diabetes forum on Facebook. She said it helps to learn how other families are coping with the disease. Occasionally, though, she'll see a story that she wishes she hadn't read.

"It's heartbreaking just to hear of a kid that doesn't wake up one morning that has the same thing he has," she said. "You wonder, were their parents doing what they were supposed to or does that just really happen? So it's frightening."

The Austads also wonder about their new baby, Ayla, and whether she will one day have diabetes. Camille Austad had a form of diabetes during her pregnancy called gestational diabetes. That doesn't necessarily mean that her newborn baby will develop the disease. But Ayla does have a higher risk since her brother has the condition.

PREVENTING DIABETES

Oscar's doctor, Toni Moran, hopes the Austads will enroll their daughter in her diabetes study when the baby turns 1. Moran is looking for people who have genetic markers that have been associated with Type 1 diabetes.

"We're trying to find the people who are highly likely to get it, and then see if we can intervene with their immune system and prevent it from happening," Moran said.

Preparing for a blood draw
Jonathan Stevens holds his daughter Nola Stevens as Jennifer Smith applies numbing cream to Nola's arm at the University of Minnesota Medical Center, Fairview in Minneapolis, Minn., Dec. 8, 2011. The Stevens family is taking part in a research study examining the prevention, delay and reversal of diabetes in the blood relatives of a type 1 diabetic.
MPR Photo/Jeffrey Thompson

Terra Stevens of St. Paul just signed up her family for Moran's clinical trial. Her 4-year-old son Duncan has Type 1 diabetes. He was diagnosed when he was 20 months old.

Diabetes can run in families, so Stevens, 31, knows there's a slightly increased chance that her 1-year-old daughter Nola could get the disease too.

"For me and us wanting to know, it's not that it would make me obsessed thinking that she will have it," Stevens said. "But I think it will help keep us a bit more vigilant about noticing signs and symptoms if anything were to happen."

There's a lot of excitement in Minnesota about the potential of new diabetes research, but the fact is it could be a long time before scientists figure out how to prevent diabetes or cure the disease.

For now, early detection and stable blood sugar control are still the main tools patients have to improve their chances of living a long, healthy life.

That means diabetes will continue to require a lot of diligence from those who have the disease and their caregivers.

But that's not to suggest that diabetes is inevitable for everyone who is susceptible. There is a lot that can be done to prevent type 2 diabetes. Doctors say anyone predisposed to the condition should stay lean and exercise regularly. If they do that, many people may be able to go their entire lifetimes without diabetes.