Weighing Your Options

Extra pounds carry more weight in neuromuscular disease

Mirrors and computer design show Jyl Frey of Tucson, Ariz.. both heavier and lighter versions of herself, as she plans the weight-control program that will work best for her.
Article Highlights:
  • Understanding how your neuromuscular disease and weight interact will help you find a weight management strategy that will work for you.
  • Obesity makes it more difficult to cope with the effects of muscle disease, and studies may suggest that people with neuromuscular disease are at a greater risk of developing heart disease and type 2 diabetes.
  • In addition to setting a reasonable weight loss goal, many experts support the idea that exercise can be a valuable part of a weight loss plan. Some researchers have found the even moderate exercise can be beneficial for people with slowly progressing muscle diseases.
  • Always consult your doctor before beginning any diet or exercise program.
by Christina Medvescek on July 1, 2004 - 3:27pm

If you’re reading this article, you’ve probably already tried to lose weight. You already know the basic, simple formula for success (burn more calories than you eat), and you know just how devilishly hard it is to follow.

People with neuromuscular diseases are up against a double (or triple or quadruple) whammy when it comes to losing weight. In addition to the usual dieting challenges — yummy fattening food everywhere — they must contend with the impact of muscle loss, decreased physical ability, and wheelchair or steroid use.

And, although all the data aren’t in, researchers suspect those extra pounds may be even more unhealthy for people with progressive muscle diseases than for others.

Medical experts and dieters agree on one thing: By better understanding how your neuromuscular disease (NMD) and your weight interact, you can find a weight management strategy you can stick to for life.

A big problem

In general, our research has documented that people with NMD are more sedentary, exercise less and have higher adiposity [more fat] than persons without NMD,” says Susan Aitkens, a researcher in the Rehabilitation Research and Training Center in Neuromuscular Diseases at the University of California at Davis.

UC Davis is investigating whether people with slowly progressive MDs (such as limb-girdle or myotonic muscular dystrophy) are at a greater risk of developing metabolic syndrome, a weight-related condition strongly linked to the development of heart disease and type 2 diabetes.

Although still in the early stages, the study suggests that people with NMDs have a higher incidence of metabolic syndrome (sometimes called syndrome X) than their unaffected peers.

Besides potentially increasing your risk of getting another chronic disease, extra weight makes it harder to cope with the effects of NMD. Being overweight impairs mobility; adaptive equipment may not fit or work as well; caregivers have to work harder. Some people find they can’t think as clearly when they carry extra weight.

The bottom line: Even though as many as two-thirds of Americans are overweight, “Obesity may be an even bigger problem for the NMD population,” says Greg Carter, MDA clinic director in Seattle, Tacoma and Olympia, Wash. As hard as it is, it’s important not to give up and allow the weight to pile on.

Muscles matter

Most calorie burning occurs in the muscles. Therefore, the less muscle mass you have, the lower your resting metabolism and the fewer calories you burn just sitting around. This isn’t great news for someone with a muscle disease.

Experts agree that exercise — no matter how limited — is a valuable part of an NMD weight loss plan. UC Davis studies have found that moderate exercise — walking, lifting weights, using a resistance band — yields positive results for people with slowly progressing muscle diseases.

Heavy exercise doesn’t provide more benefit than moderate, and it might be detrimental. (See “Making Muscle, Burning Calories” for guidelines.)

“The key is to be more active than you are currently,” emphasizes Megan McCrory, a nutritionist and researcher at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University in Boston. “Add a few minutes of walking (or other exercise) every day or every other day. Make it a priority.”

Small victories count

Another part of the solution is to set a reasonable weight loss goal. Rather than shooting for an ideal weight, look for ways to reach and hold a healthier weight.

Research shows that a modest loss of 5 percent to 10 percent of your starting weight, sustained over time, can lower blood pressure, reduce cholesterol and dramatically cut the risk of type 2 diabetes. If your weight isn’t yet a big problem, simply holding steady also counts as a victory.

Above all, don’t embark on a rapid-loss diet strategy. Slow loss is likely to be more beneficial for people with muscle disease, says Ted Abresch, director of research at the Center in Neuromuscular Diseases at UC Davis.

Diets in which “the pounds melt away” usually result in rapid regaining down the line, often to a weight that’s higher than it was before the diet. (See “Taming the Hunger Monster.”)

A moment on the lips

Some doctors have gone so far as to call obesity a “chronic condition” because it’s so hard for dieters to keep from regaining lost pounds.

But people with NMDs already know how to deal with chronic conditions. Just as with a neuromuscular disease, a weight problem may not be “curable,” but it can be “managed.”

The keys are: Find the diet and exercise program that best suits your body and lifestyle; go slowly and know you’re in it for the long haul; and don’t feel guilty or stressed about things you can’t change.

You still may not look like a fashion model, but you’ll have improved health and a real sense of personal power to show for your efforts.


In addition to the stories in this series listed below, be sure to check out the following:

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