The diabetes way of life

Americans with disease learn to eat well, exercise

Ted DeLeon’s family is plagued by diabetes on all sides. His parents, aunts and uncles and seven of nine siblings have it.

Yet, when it came to him, he didn’t recognize it.

“I was thirsty all the time. I gained 30 pounds over summer, was going to the restroom a lot at night,” he says. When, by chance, he saw an article about diabetes symptoms, “I said, shoot, that’s me.” He went to a doctor who tested the level of sugar in his blood. Normal is 70 to 149. DeLeon’s reading was 360.

“I was almost on the verge of a diabetic coma.”

DeLeon’s story is one that is becoming all too common in the USA. An estimated 17 million Americans have diabetes — an increase of nearly 1.5 million in two years. Of these, nearly 6 million are undiagnosed, yet the disease is silently at work in them, damaging blood vessels, nerves, eyes, heart, kidneys, legs, and feet.

The American way of life — too much food, too little exercise — has contributed to an epidemic of diabetes that is striking people of all ages. Even adolescents are being diagnosed with type 2 diabetes, a form of the disease usually seen only in midlife.

Once diagnosed, diabetes becomes a way of life for the patient and his family. While diabetics may live long and active lives, the disease is chronic and incurable, and may lead to symptoms that can cause disability and death.

Type 2 diabetes is caused by the body’s inability to use efficiently the hormone insulin, which helps convert sugar into energy. Up to 95% of people with diabetes have type 2. Type 1, or juvenile diabetes, occurs when insulin-producing cells in the pancreas are destroyed. Type 1, which strikes one in every 400 to 500 children and adolescents, requires daily insulin injections.

Type 2 diabetes is mushrooming in the USA. Most affected are minority communities, where a combination of lifestyle and genetics combines to increase risk.

DeLeon, 54, who is Mexican-American, and his wife, Debbie, 48, who is Native American, are well aware of that and are spreading the word in their communities in Lansing, Mich., through an ethnic alliance that focuses on access to medical care.

“Being indigenous,” DeLeon says, “we’re way ahead of the rest of the population in terms of prevalence.”

Debbie says she doesn’t have diabetes, “yet,” but it’s “rampant in my family. It has been devastating. Many have not made it to their 50s.”

Diabetes is so common among American Indians, affecting more than 25% of the population in some tribes, that casinos and public buildings on reservations are equipped with hazardous waste disposal boxes mounted in restrooms for safe disposal of insulin syringes and lancets used in testing blood.

While genes may set you up for diabetes, Ted DeLeon says, it “kicks in when you gain a lot of weight and you don’t exercise. Where our family’s ancestors came from in Mexico, they don’t have it. Why? They eat beans and tortillas. Meat is a treat. There’s no McDonald’s. They work a lot (physically), and we don’t.”

By watching his diet and walking — or being walked by — his 90-pound dog, T’tonka, every day, DeLeon has successfully kept his blood sugars under control. But for many people, managing diabetes is a complex balancing act that involves monitoring blood sugar levels two or more times a day, gaining an understanding of how foods interact with metabolism and how exercise affects blood sugar levels.

Many diabetics take medications and some require insulin injections.

“Diabetes, perhaps more than any other chronic disease, must be managed in large part by the patient,” says biologist and medical writer Gretchen Becker of Halifax, Vt., in the introduction to her book, The First Year: Type 2 Diabetes (Marlowe & Co. $14.95). “This is because everything you do affects your blood sugar levels.”

The weight connection

For Sandra Henson, 50, of Beaumont, Texas, diabetes meant major changes in her eating habits. “In southeast Texas, we eat a lot of rice, and I had to change to brown rice, change portion size, always watching to not eat too much at one time,” she says. Now, “I’ve lost weight, yes, but I’ve still got a long way to go.”

She’s not worrying about her figure out of vanity. Being overweight reduces insulin sensitivity in people with diabetes, and it increases the risk of developing the disease in the first place. Because exercise has been found in several clinical studies to improve control of blood sugar, Henson, who rarely worked out before she was diagnosed, has become faithful about going to the gym.

But it’s not always easy. “I travel a lot, and sometimes I work late. When I get home I’m tired, and I don’t want to exercise. You have to discipline yourself and, hopefully, get other people to motivate you.” Like many new diabetics, she attended diabetes education classes to learn such survival skills as what to do if her blood sugar level plummets, how to cook without added fat, the difference between complex and simple carbohydrates and much more.

Family members play an important supporting role in diabetes management, experts say, and that may require sacrifices of their own. No more ice cream in the freezer. Fewer rich dinners in fabulous restaurants. Less drinking. Constant attention to diet and exercise. And, in some cases, it means tending to the needs of a patient whose feet have been amputated or whose vision is lost.

The demands of the disease on patient and family can lead to depression, marital discord and other stresses that John Zrebiec, associate director of mental health services at the Joslin Diabetes Center in Boston, calls “diabetes burnout.”

The emotional impact of diabetes and its effect on the family may require professional help, he says, identifying three specific points that send patients to a counselor: “We tend to see people when they’re newly diagnosed, when something about their diabetes care is going off track — there’s frustration, depression, anxiety, it’s not going smoothly — and third, is when there is the onset of long-term complications of diabetes. The most common diagnosis we see is depression.”

People with diabetes are four times more likely to be depressed than non-diabetics, Zrebiec says. “I don’t know of research on how it affects the rest of the family, but I wouldn’t be surprised if they have more depression, too.”

While there may be a physical explanation for the increased rate of depression, he says, it’s clear the psychological cause is “a feeling of helplessness,” he says. “There are many times in trying to live with diabetes that you feel out of control and helpless. There are times you can do 110% of what you’re asked to do and still have blood sugars that make no sense.”

Knowing your body

Still, many people manage to balance the demands of the disease to enjoy full, happy and healthy lives.

One of these is Gabriel Caro, a Boston Web site developer. At 6- foot-1, a fit 174 pounds and only 29 years old, he doesn’t fit the stereotype of an overweight, middle-aged diabetic. Caro was training for a marathon when he was diagnosed two years ago with type 2 diabetes.

While he has to remain ever vigilant, he says, a combination of medication and a lot of exercise keep his diabetes under control, allowing him flexibility to commit the odd dietary indiscretion without serious repercussions. “I will never let something like having diabetes get in the way of me enjoying my life,” he says. “There are times when I know I should not be having a glass of wine or piece of cake, but I will have it.”

He refuses to feel guilty. “Diabetes comes with this mystique around it. People are incredibly afraid of making a mistake or not eating well, or they just punish themselves for not exercising,” he says, but “it’s OK and natural and human to enjoy life and food. Ultimately, the most effective technique of controlling your disease is approaching it from different levels, physically, spiritually and emotionally. It’s a matter of quality of life. Yes, you have to watch what you eat, and you have to exercise, but you should view those things as positive.”

Living with diabetes means a lot of reading, he says. “You have to understand your metabolism and how your body works, then you have to read about food and the properties of food, how to eat in proportions, the correct amounts of food, how to space your meals,” he says, but there is a benefit that others who don’t have diabetes may not experience. “You also have to study yourself a lot,” he says. “I think that among other things, it really tunes you in and makes you aware of your body.”

 

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