Expert tips for shedding or adding weight to manage one's disease
Any health professional will tell you that good nutrition is a key to living well with and managing a neuromuscular disease. But what if the disease itself makes that goal hard to reach? That’s the all-too-common challenge many people with neuromuscular disorders face.
For example, when mobility decreases, unhealthy weight gain tends to follow. “I often see this issue in people with Duchenne muscular dystrophy (DMD),” says Michael Fischer, a clinical dietitian at the MDA/ALS Center at Carolinas Medical Center in Charlotte, N.C. “Many are on a corticosteroid that may be associated with side effects, such as increased appetite and sodium retention, both of which lead to weight gain.” (For more, see related sidebar below.)
Changes in mobility also play a role. “As mobility declines, so do people’s energy needs,” Fischer adds. “But they may not be adjusting their caloric intake as they decrease their energy expenditure.” If they take in more calories than they burn, they put on extra pounds. Research suggests as many as 54 percent of people with DMD are obese, although the problem is not confined to people with DMD.
Katrina Gossett, who has spinal muscular atrophy (SMA), has described her struggle this way: “Combine college and the dining halls and the freedom to eat whatever you want with having spinal muscular atrophy, which prevented exercise, and you’ve got trouble. My weight slowly crept up, as did my pants size.”
Gossett found the key to weight control was obtaining a wheelchair scale. (To learn more about her experience, read Weight Loss from a Wheelchair: My Plan, and follow her MDA Transitions Center blog.)
It’s not easy to do, but losing weight can have a huge impact on health and well-being. “By decreasing body fat, individuals breathe better, sleep better and can make more of the muscle function they have,” says Stephen Chavez, Ph.D., outpatient dietitian at Children’s National Medical Center in Washington, D.C.
Other individuals, particularly those diagnosed with ALS (amyotrophic lateral sclerosis) or SMA, may face the opposite problem. Many experience difficulty chewing and swallowing, and may avoid foods that cause issues for them. “Overall their intake will go down, leading to weight loss,” Fischer says.
That issue can be compounded by upper extremity weakness. “If they don’t have a caregiver to help feed them, they may end up skipping meals due to the hassle,” he adds. Fortunately there are many ways to combat these common nutritional challenges.
To lose weight:
To increase food consumption:
Appetite and Corticosteroids
Corticosteroids like prednisone and deflazacort, often prescribed to treat DMD and other neuromuscular disorders — particularly myasthenia gravis (MG) and polymyositis (PM) — are known for causing unwanted weight gain. Managing hunger with small, frequent servings of high-fiber foods that are low in calories and developing an eating schedule are some helpful hints. To learn more, read War on Weight Gain and Nutritional Considerations While on Corticosteroids.
An occupational therapist can help individuals who have trouble chewing or swallowing food by providing altered utensils, arm supports and education on creative mealtime strategies. And both dietitians and speech therapists can educate people on safe swallowing tactics, such as:
Want to know more? Consult the past Quest feature package Exercising with a Muscle Disease. Find it and other related content on nutrition and weight loss by searching our archives at quest.mda.org.
Ready to get started? Contact your local MDA clinic to schedule an appointment with a registered dietitian and speech-language pathologist (SLP).
Beth Howard is a freelance writer living in Charlotte, N.C.