Living Well with Diabetes

Linda Koehler
Robert Mandell
Nicole Johnson Baker
Jay Cutler

Diabetes is an illness that can produce serious complications and potentially cause an early death. However, millions of people live with it every day, and live well.

A type 1 diabetic herself as well as a researcher of diabetes, Sheri Colberg has spoken with thousands of people who have the illness. The ones who have the most success at managing their diabetes do not let it take over their lives. It is a challenge that definitely affects their lives, but like Colberg, they live life first and are diabetic second.

Especially when she was interviewing people for her latest book, 50 Secrets of the World's Longest Living People with Diabetes, she heard a common theme from her subjects, some of whom have lived with diabetes for more than eight decades. The people she spoke with did not let their diabetes control them. People with a chronic disease commonly suffer with depression and a sense of hopelessness, but “these people have gone so far beyond that, to the point of embracing diabetes,”²⁰ she says. They told Colberg, “Diabetes saved my life. I look around and see people so unhealthy, and I'm healthy.”²¹

“Diabetes doesn't have to hold you back from much of anything,” she explains, knowing this from her own life as well as

from others’ experience. “Diabetes can even make you stronger, because you have to take responsibility for yourself.”²²

When people are diagnosed with diabetes, they can feel overwhelmed and frightened. After all, diabetes is potentially deadly, and it has serious consequences when not controlled. Newly diagnosed people have a lot to learn about their disease and how to manage it. This is important to avoid the life-altering complications and also to live as well as possible with it. Some people never learn to manage their diabetes well, or for some reason they are not able to. Their diabetes seems to rule their lives, and they can become seriously depressed. But many people adjust well and work hard to keep their diabetes under control. This takes a lot of effort, patience, and a positive outlook. Here are the stories of four people who learned to live life first and be diabetics second.

Linda Koehler

Linda Koehler of Tucson, Arizona, developed type 1 at age eleven. She is now fifty-five. Unlike many people who keep their diabetes private, she has not been afraid to let people know about hers. She has worked as a first-grade teacher for many years, and she always makes sure her students know she has diabetes.

“If I have low blood sugar and do something like forget their names for a little while, they understand why,”²³ she explains. And should her diabetes make it necessary for her to have help from another adult, her students know to call someone.

After her diagnosis Koehler remained active and fit, riding her bike and playing lots of tennis. But she did curtail some activities such as going to restaurants or to friends’ birthday parties because she could not have a piece of cake. She was afraid of her diabetes getting in the way of what she wanted to do, although she later learned it did not have to. She says she was fortunate because “my mother was always harping after me to eat the right things. She was always diligent about educating me. She guided me to know what to do and what not to do.”²⁴ However, she could not fully accept that she had diabetes when she was young because she did not want to be different

from other kids. Sometimes, she just did not want to give herself insulin shots or eat right all the time. Because of this, Koehler was frequently hospitalized when her blood sugar became too high.

Koehler is married and has three daughters, aged 27, 20, and 11. But when she was an adolescent, she recalls, “my childhood doctor advised me in a friendly ‘heart-to-heart’ chat that it would not be a good idea for me to have children and pass on this horrible disease to humanity. Emotionally, this discussion hit me hard. As a result, my goal in life was to make my life as normal as I could.”²⁵

She is healthy, too, with none of the typical complications of diabetes, and she plans to live a very long time. She still eats well, and although she does not exercise as much as she would like, she is very active. She has not let diabetes prevent her from having a full life, always believing she can handle a new opportunity when it comes along.

Puberty and Diabetes

As if diabetes in children is not already difficult to control, adolescence and puberty can make it even harder. All the hormonal changes under way can make blood glucose and insulin levels swing wildly, no matter how carefully the adolescent with diabetes works to stay within normal levels.

One hormone in particular is believed to be the culprit. During puberty, growth hormone stimulates bone and muscle mass to grow, and it also works to block insulin. At the same time, as blood sugar falls, another hormone called adrenaline is released into the bloodstream, which triggers the release of stored glucose. The result is that blood glucose can fluctuate up and down very quickly.

When Koehler was diagnosed in the mid-1960s, and for years afterward, living with diabetes was more complicated than it is now. For instance, in those days before disposable syringes, taking insulin meant boiling glass syringes to sterilize them and fitting them with long needles for the shots. When she was pregnant with her third daughter in the late 1990s, she had

trouble regulating her blood sugar, as do many pregnant women with diabetes because of the many changes that happen to a woman's body during pregnancy. So her doctor suggested she begin using an external insulin pump, which is worn near the waist and regularly sends insulin into the body through a small tube. Using an insulin pump means not having to inject insulin. She began using a pump and found it so easy to use and so helpful in regulating her blood sugar, she soon knew she would never give it up. “It gives me a lot more convenience and makes my life a lot more normal,”²⁶ she says. Koehler has had many years to adjust to the fact that she has diabetes, and for a long time she has taken excellent care of herself. She still ends up in the hospital sometimes, as do many diabetics who are careful about managing their diabetes, simply because this is an unpredictable disease. Today, she is better prepared when that happens and works harder than she did in childhood to make sure it happens less often.

She has some hard-won advice for people newly diagnosed with diabetes, whether it be type 1 or 2. She says, “First, listen to the professionals,” followed by, “Hands on, minds on,”²⁷ meaning that learning as much as possible about diabetes self-care is important. As someone who has had diabetes since childhood, she knows the importance of support from peer groups. If kids with diabetes can attend special camps or groups that teach them about diabetes and gives them an opportunity to meet other kids with the illness, that can be a huge help.

“They need to believe in themselves and do what they can to take care of themselves,” she says. “It's up to them. No one else can do it for them. They have to accept that they have diabetes and persevere.”²⁸

Robert Mandell

Diabetes can strike at any age, and it can remain hidden for years. Fortunately, if it is type 2, eating right and exercise can help delay its onset and the use of medications to treat it, as Robert Mandell discovered.

Mandell, now eighty-five, has had type 2 diabetes for more than forty years. “I have a bad family history of it. My mother and

grandmother had it,”²⁹ he says. Like many people, he did not realize his blood sugar was higher than it should be until he went for his annual physical. His doctor said test results showed Man-dell's sugar was high but medication was not necessary yet.

Mandell weighed about 215 pounds then, and his doctor encouraged him to start exercising. He began taking frequent walks with a friend, and then the two of them started jogging. He lost about 30 pounds. When he moved to Florida, “My new doctor hounded me to lose more weight, and I got to 175 pounds,”³⁰ he says. For many years, his diabetes remained under control and he took only an oral medication for it.

Finally, when he was around seventy years old, he had to begin injecting insulin. Today, he takes both insulin and oral medication twice daily. The insulin caused him to gain some weight, and he still exercises occasionally by walking and riding a stationary bike, but “not as much as I should,” he admits. While he eats pasta occasionally, he eats lots of salads because “I know what I have to do.”³¹ Mandell had heart surgery a few years ago and has arthritis in his hands. “Outside of that, I'm in reasonably good health for my age,”³² he says. His biggest challenge is having to take about twelve pills every morning and night, some for diabetes and some for other conditions.

His best advice for someone newly diagnosed with type 2 diabetes is “diet and exercise. That's it,” he says. “Get into an exercise program and keep your weight down. Most people who have type 2 are on the obese side. If they exercise, usually they can maintain [their health] for many years without insulin.”³³

Nicole Johnson Baker

Today, diabetes does not have to stop people from doing much of anything. With proper planning and care, combined with the exciting new medical technology available, a person with diabetes can follow his or her dreams, even all the way to a crown, as Nicole Johnson Baker did.

When Baker was diagnosed with type 1 diabetes at age nineteen in 1993, she had no idea she would later be crowned Miss America in 1999. In fact, her doctors warned her against competing in the pageant because they said the stress would be harmful.

She entered anyway. During the entire pageant, she wore her insulin pump, as she always does, and talked with many people about the illness. Now in her mid-thirties, Baker is a national diabetes consultant for the company that makes her

Hypoglycemic-Alert Dogs

Assistance dogs for people who are blind, deaf, or have other physical challenges have become a familiar addition to the range of tools that help them live safely. Now, some dogs are being trained to help people with diabetes avoid the danger of low blood sugar. Especially for very young children or people afraid of becoming hypoglycemic without realizing it, these amazing dogs are proving their worth.

Trainers of these dogs say they are right 90 percent of the time in sensing a dangerous fall in blood glucose even before the person with diabetes is aware of it. When they sense this, they “alert”— jump, run around, pace, or put their head in their owner's lap—to remind their owner to eat some appropriate food to bring glucose levels up to normal. The dog then gets a treat.

While no one yet knows how dogs do this, it is believed they are able to pick up scents created by the chemical change in their owners’ bodies.

These hypoglycemic-alert dogs cost at least twenty thousand dollars, and the training of dog and client takes about two years.

insulin pump. She is a cohost of dLife, a weekly program on CNBC aimed at people with diabetes. She has written many articles about living with diabetes, her autobiography, and several cookbooks. She is also a familiar face in Washington, D.C., where she promotes legislation regarding diabetes.

She lives in Pittsburgh, Pennsylvania, with her husband, and she is pursuing a second master's degree, in public health (her first is in journalism). When she was diagnosed with diabetes, her doctors told her she should never have children because of the danger diabetes would pose to her and to the baby. Today, her daughter Ava is a healthy five-year-old.

Diabetes has certainly affected Baker's life, but it has also given her the opportunity to be a role model for empowering people with diabetes. She says, “One's greatest challenge can be one's greatest blessing, physically and psychologically.”³⁴ In that light, she has always not only accepted her diabetes but also found it to be a blessing. By dealing with it honestly and openly, she has created a good career that revolves around it. She has also used the strength and wisdom it has brought her in her family and professional life.

In addition to her insulin pump, she sometimes wears a glucose sensor attached to her abdomen, which gives her constant blood sugar readings without the finger sticks. She has a cell phone that automatically transfers the glucose readings to her health care team. All this technology helps her feel more in control and does an excellent job of keeping her right on track.

Diabetes is life-changing. While it can often be successfully controlled, it requires constant vigilance. People who have it can never ignore that fact—because they could die if they do. Yet acceptance and a positive attitude, as Baker has shown, can go a long way in creating a happy, successful life even with diabetes.

In 2006 Baker said, “What you think will steal life away has given me life. It has taught me more than ever about determination and discipline and other things I've never been exposed to.”³⁵

Jay Cutler

In the past, people with serious, chronic illnesses were expected —even ordered—to remain inactive out of fear that too much activity would be harmful. They would often also hide their disease as if it were something shameful, or hide themselves from the public eye because they believed acknowledging their illness would damage their reputation. Fortunately, as Jay Cutler and other athletes are demonstrating, such beliefs are outdated.

To watch Cutler on the football field, it is impossible to know that the young, 6-foot, 3-inch (2m) quarterback for the Denver Broncos has type 1 diabetes. His throwing arm is strong, he is energetic and powerful. He is still fast on his feet. And he is working hard to remain that way. Jay was diagnosed in April 2008, after mysteriously losing thirty pounds the previous fall, along with having severe thirst, fatigue, frequent urination, and unstoppable hunger.

“I was just crushing food,” he recalls. “I was eating six meals a day—I'd eat a meal and like 30 minutes later I'd be ready to eat again. Yet I kept losing weight, and they were telling me it was the stress. I was like, ‘I'm not that stressed.’ I mean, my jeans were falling off my body and I was all pale.”³⁶

Bronco coach Mike Shanahan praises Jay for taking control of his illness. “Jay has met this thing head on,” Shanahan said. “I'm really not surprised. I mean, he was diagnosed with a very serious disease, and he has just gone after it and is treating it. He's done a great job of dealing with it. Jay has great discipline. To be a successful quarterback in the National Football League, you have to have discipline, and Jay has plenty of it. It is really helping him deal with it.”³⁷

Now the quarterback, who comes from Santa Claus, Indiana, faithfully checks his blood glucose levels and injects himself with insulin several times daily. He eats meals carefully prepared by the team's nutritional staff. His weight is back up in the 220 range, a good weight for him. He says he feels fine and does not experience many highs or lows in his blood sugar. He and the team believe he will be a better player than ever.

Today, millions of people have diabetes. They come from all ethnic and social groups. They can be rich or poor, college graduates or uneducated, old or young. But as this very tiny sample of four people shows, having diabetes does not mean that normal life comes to an end. People with diabetes can still have good, productive lives. That does not mean it will be easy, because managing and coping with diabetes is hard work. It requires patience and determination. But oftentimes, coping with a serious illness can make people stronger and more willing to face other challenges. That is certainly true for Linda Koehler, Robert Mandell, Nicole Johnson Baker, and Jay Cutler, just as it is true for many other people with diabetes.