Eat Smart

Expert tips for shedding or adding weight to manage one's disease

by Beth Howard on January 5, 2015 - 9:15am

Quest Winter 2015

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:

  • Incorporate more fiber-rich foods — fruits, veggies and whole grains — into meals to promote satiety and diminish hunger pangs. 
  • Spread meals out and incorporate healthy snacks like fruit to decrease the risk of overeating at any one meal due to excessive hunger.
  • Minimize eating out. People tend to overeat when they are eating in restaurants or taking food out. When you prepare meals at home, you know what’s in your food and can control the portions, Fischer says.
  • Avoid empty calories (e.g., soda, chips), and make flavorful, nutrient-dense meals. Chavez recommends filling egg “scrambles,” brimming with onions, peppers and other vegetables. Or top chicken breasts and other lean proteins with salsa. 
  • Make healthy versions of favorite foods — like pizza. Start with a pre-made, whole-wheat crust and add cheese (in moderation) and favorite vegetable toppings. 
  • With kids, focus generally on improving eating habits to establish healthier long-term routines. “If they can improve the quality of their diet, there will usually be a drop-off in overall calorie intake,” Fischer says. 
  • With adults, track daily calorie intake via online programs like MyFitnessPal and CalorieKing. These calorie counters also break down food into protein, fat, carbohydrates. Fischer says, “This can be an eye-opening exercise for patients who may think they’re eating healthier or consuming less calories but then discover that the big picture is not so healthy.”
  • Exercise, if feasible. It’s a critical component of weight control. Of course, consult with a physician first, and then work with a physical therapist to make sure the type and amount of exercise performed is appropriate. When mobility declines to the point where significant exercise is no longer possible, proper nutrition is even more important. 

To increase food consumption:

  • Prepare homemade smoothies: They can be made as calorically dense as desired and as thick, so they are easier to swallow. Fischer suggests blending up a big batch in the morning to drink throughout the day. Combine fruit, vegetables, yogurt, milk, peanut butter, avocado, oils and protein powder to make for a delicious, high-calorie protein shake. Add in a Boost, Ensure or Carnation Instant Breakfast beverage to fortify it. 
  • Make use of condiments: Adding honey, ketchup, mayonnaise, mustard, oils, jelly, peanut butter, butter and other condiments to meals can increase intake by hundreds of calories at the end of the day. 
  • Opt for fish: This power protein is flaky, so it’s relatively easy to chew and is a great source of omega-3 fatty acids, Chavez says.  

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:

  • Use thickeners such as Thick-It or Thicken-Up in thin liquids, choosing soft or pureed foods for easier swallowing and avoiding mixed consistency items (e.g., chunky soups, cereal with milk).
  • Tuck the chin down toward the chest before/during each swallow to decrease the risk of food or liquid going down the wrong way.
  • Pay attention! It seems simple, but watching TV or talking to others while eating can be distracting and lead to coughing or choking on food that isn’t chewed completely.
  • Make an effortful or audible swallow to help move food down the right way.
  • Sit up properly while eating.
  • Take small sips and bites.

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 

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.

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