The Truth About Nutrition and Neuromuscular Disease
By Darlene Demetri | Thursday, February 16, 2023
5 Second Summary
Are carbs bad for you? Do your muscles need extra protein? Experts on nutrition and neuromuscular disease answer these questions and more.
What is a healthy diet? That’s not a simple question to answer because it depends on a lot of factors, including if you’re living with a neuromuscular disease. For example, if you have low muscle mass due to muscular dystrophy, high-protein in-between-meal snacks might be a healthy choice. If you have amyotrophic lateral sclerosis (ALS) and can only eat a little bit every day, thickened ice cream could be a healthy part of your diet.
“It really depends. When it comes to nutrition, there’s always a ‘Yes, but …’,” says Tad Campbell, an assistant professor with the Department of Clinical Nutrition at UT Southwestern Medical Center in Dallas, Texas. To cut through the confusion, we asked experts about some often-misunderstood areas of nutrition and how they affect people with neuromuscular diseases.
What you should know about:
Many fad diets have fueled the mistaken belief that all carbs are bad for you. In fact, they are an essential energy source.
“Some of the healthiest food groups have carbs,” says Evelyn Gold, a clinical dietician with the Complex Healthcare Program at Nationwide Children’s Hospital in Columbus, Ohio. “Carbs are essential for a well-balanced diet full of variety so the body and brain can conduct the processes to live.”
Complex carbs are the best type because the body assimilates and expends them slowly. Found in fruits, vegetables, and whole grains, complex carbs provide energy over a long period of time in manageable increments, are less likely to be stored as fat tissue, and keep you full longer.
Complex carbs high in fiber, like whole grains, are great for the gastrointestinal tract, keeping bowel movements more regular.
Simple carbs, found in table sugar and any type of added sugar in foods and drinks, are short acting. “Like gasoline in your car, you will burn through them quickly and once gone, you have an empty tank,” says Evelyn. Consuming them often can make you feel tired and sluggish. Plus, the body converts an overload of simple carbs into fat tissue.
Fruits, because they contain natural sugars, are often mistaken for simple carbs. But the complex sugars in fruits take the body more time to break down. Complex sugars also exist in natural plant fiber, such as the skin of blueberries and apples. Like vegetables and whole grains, fruits are healthy and provide lasting energy.
Starchy and non-starchy vegetables may be part of a healthy diet, with caveats. Starchy vegetables usually have a soft, pasty texture on the inside when cooked, such as peas and potatoes. They have an elevated carbohydrate content and make a bigger impact on blood sugar, so portion control may be necessary if you have diabetes or are on corticosteroid treatment.
Non-starchy vegetables have a low or no carbohydrate content. Some non-starchy vegetables can be a problem if you have difficulty swallowing. “Many people with dysphasia choke on lettuce,” says Tad. “I tell them, ‘Don’t bother with it; it’s not worth the risk of aspiration.’” This can be true for any leafy green.
He recommends cooking vegetables and fruits until they are soft enough to chew and swallow easily.
Expert recommendation: Try to get 5 to 6 servings of a variety of fruits, vegetables, and whole gains a day.
It’s not a four-letter word. We all need healthy fats for brain function and other key processes in the body.
Unsaturated fat is the healthiest type. It’s liquid at room temperature and is a blend of monounsaturated and polyunsaturated fats. Seed and plant-based oils high in monounsaturated fat, such as avocado and olive, are easier to digest and helpful to the cardiovascular system when consumed in moderation, according to the American Heart Association.
Foods high in healthy unsaturated fats include avocados, fish, nuts, nut butters, and seeds.
Saturated fat is solid at room temperature and is found in higher amounts in red meat and whole dairy products, such as butter and lard. Plant-based sources include tropical oils such as coconut, palm, and palm kernel oil.
Trans fat is manufactured and may be present in packaged pastries, pie crusts, and some fast foods like French fries. If the amount in a serving size is small enough, it is not required to be listed on the nutrition label. “Always check the ingredients list,” advises Tad. “Look for the words ‘partially hydrogenated’ or ‘hydrogenated’. That tells you there are trans fats in the product.”
Saturated and trans fats are not easily absorbed by the body. They end up in the circulatory system, where they can raise cholesterol and blood fat levels, clog arteries, cause inflammation in the body, and increase the risk for cardiovascular disease.
Expert recommendation: Focus on consuming unsaturated fat and limit saturated fat to 7% of your daily calories. Avoid trans fat entirely.
Protein helps maintain muscle mass and other processes in the body. Some people with neuromuscular conditions benefit from making protein a focus in their diet. Unlike carbs and fats, proteins are not stored in the body.
“Protein obtained through food is floating in the bloodstream where it’s needed,” Tad says. “If there is no protein available in the bloodstream, it’s drawn from another protein source in the body — the muscles. That’s how you lose muscle when you lose weight.”
With neuromuscular diseases that result in fatigue, decreased appetite, difficulty feeding oneself, and difficulty chewing and swallowing, protein intake is often shortchanged, so it’s important to seek out healthy high-protein foods with these tips:
- Eat mostly lean protein, which has a lower animal fat or fat content in general.
- Limit fatty protein, which has a high animal fat content. Except for fish, the fats you find in animal protein are saturated.
- Fish is high in monounsaturated and polyunsaturated fats. Dieticians consider all fish healthy to eat, including shellfish.
- Among meats, chicken breast is the leanest option, with little to no saturated fat. Steak has a higher saturated fat content than any edible part of a chicken.
- If you have trouble swallowing, pureed meats, mashed beans, scrambled eggs, tofu, cottage cheese, and Greek yogurt are good options.
- Plant-based proteins include beans, nuts, nut butters, seeds, and soy. If you are considering becoming a vegetarian or vegan, talk with a dietician to make sure you get the optimal amount of protein.
“Although we can’t stop the progression of, say Duchenne muscular dystrophy, we can help an individual preserve lean muscle mass as long as possible by making sure their diet is well-balanced and they are getting in some good sources of usable proteins as opposed to those higher fat proteins,” Evelyn says.
Expert recommendation: Most people need between 0.8 to 1.2 grams of protein per kilogram of body weight. With such a wide range, it’s best to discuss your specific needs with a dietician. In most cases, lean meat and fish are the best options.
Critical for healthy bones and teeth, calcium is a mineral found in dairy products, leafy green vegetables, and soy.
“Often, bone density is low in patients who can’t walk, because they’re not putting enough pressure on certain bones to maintain density and strength,” says Evelyn. Individuals with swallowing issues also are likely to consume fewer calcium-rich foods.
This is where dairy can help, especially if you have swallowing difficulties. It’s high in calcium, a good source of protein, and may contain other nutrients such as vitamin D and B vitamins. “Cottage cheese alone provides all these macro and micronutrients,” Tad says.
Vitamin D helps the body absorb calcium and is important for regulating emotions. “Americans don’t get enough calcium from their diets, and it is difficult to get vitamin D through food, so these micronutrients are usually fortified in milk and juices,” Evelyn says.
Expert recommendation: Look for milk, juice, cereal, and bread fortified with calcium and vitamin D.
Whole foods vs processed foods
Processing food means changing it from its natural state. A whole food looks as it did when it came from the earth, such as an apple or a carrot. Processed foods come in many forms, from canned to frozen to packaged.
When food is processed, preservatives, including salt, are usually added, making many convenience foods high in sodium, which contributes to high blood pressure and water retention. Processed foods also typically have added fat and sugar, and important nutrients, such as fiber, may be removed.
“The rule of thumb we go by is you want your foods to be as close to nature as possible as opposed to foods that had a lot of handling and things done to them before you eat them,” Tad says.
But dieticians also acknowledge that processed foods are often easier to prepare and eat.
“With a neuromuscular disease are you able to stand there for several minutes prepping and cooking an entire meal that requires a lot of whole foods? Or are you better off finding something more convenient for yourself?” Tad asks.
There might be a place for some processed foods in your diet to make life easier. For example, for someone with weakness in the arms, a high-protein, easy-to-prepare finger food like frozen chicken tenders can be a good choice. Look for a brand that uses chicken breast meat and has at least 12 grams of protein per serving.
With all packaged foods, look for options that contain less than 160 milligrams of sodium per serving.
Ultimately, a healthy diet for you is one that is sustainable and produces the best outcomes. Working with a dietician who is familiar with neuromuscular diseases, which can be found at many MDA Care Centers, can help you get there.
Darlene Demetri is a Connecticut-based freelance writer living with facioscapulohumeral muscular dystrophy (FSHD).
Healthy Food Choices
- Whole grains
- Whole wheat breads
- Whole wheat pastas
- Brown rice
*Good source of protein.
- Leafy greens* **
- Summer squash
*Good source of calcium.
**Avoid if you have trouble swallowing.
- Winter squash**
- Potatoes (unpeeled)
*Good source of protein and fiber.
**Avoid if you have trouble swallowing.
*Skin provides extra fiber.
**High in antioxidants that fight inflammation.
Lean or healthy fats:
- Fish, especially salmon*
- Nut butters
- Pumpkin seeds
- Soy-based products
*Good source of vitamin D.
- Cottage cheese
- Greek yogurt**
*Good source of calcium.
**Look for options fortified with vitamin D.
Next Steps and Useful Resources
Watch the Nutrition and Neuromuscular Disease MDA Engage webinar to learn more about healthy eating.
Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.