A balanced diet with the right amount of nutrition is an essential part of everyone’s quest for good health. Food provides the energy our body needs to stay strong and carry out daily activities.
But if you have a neuromuscular disorder, it can sometimes make proper nutrition a lot more challenging. Depending on your particular situation, you may experience anything from weight changes (losses or gains), to dehydration, and motility issues.
Some people with neuromuscular conditions may have a tendency to put on too much weight. This can be due to reduced mobility (meaning less energy is burned off), or an increase in appetite (which may be a side effect of some medications, such as steroids). Too much weight can place an extra burden on already weakened muscles, as well as cause a strain on the respiratory system. In the case of weight gain, prevention is better (and easier) than getting excess weight to come off.
Keeping the weight stable can be done in two ways: eating a balanced diet by reducing intake in high-calorie foods, or by exercising wherever possible – although this can be difficult for individuals with limited mobility.
Sometimes poor muscle tone in the stomach can cause its contents to “empty out” slowly, making you feel full quickly, or not feel very hungry in the first place. This may mean you are only able to eat and drink a small amount at a time. Reduced mobility may also make you progressively more tired during the course of a meal. As a result, mealtimes can last a long time, and you may not end up eating very much. And if you don’t ingest enough calories, your blood sugar levels may also drop. This can cause weakness, dizziness, mood swings, hot/cold flashes, and shakiness.
Adding high-calorie food supplements or snacks (such as meal-replacement drinks or pudding) between meals may help you to take in more energy and gain back some of the weight you have lost.
Chewing and Swallowing
People with neuromuscular disorders may also have difficulty chewing and swallowing their food. If the associated muscles are very weak, swallowing may be difficult either because of trouble moving food around the mouth with the tongue, tightness or weakness of jaw muscles, or difficulty protecting the airway.
These eating and drinking difficulties could cause you to accidentally “spill” food or drink into your airway, making aspiration and risk of infection a possibility.
Certain types of foods are more difficult to chew and swallow than others, especially when there is muscle weakness. If you experience this, try to avoid certain problem foods, such as tough pieces of meat or sticky foods like thick cheese spread or peanut butter. Sometimes thickened drinks, such as milkshakes, can be easier to swallow because they cause less risk of aspiration than thin liquids.
Muscle weakness can also lead to constipation and other gastrointestinal motility issues. And difficulty swallowing can not only lead to weight loss, but also dehydration if you are not drinking enough liquids as a result.
Though experiencing any of the above issues can be challenging, there are many things that can be done to help improve your situation and bring your nutrition back into balance – such as such as dietary changes, food texture modification, supplements, snacks between meals, or oral motor exercises.
Your healthcare team – which may include a dietician (to assist with food choices and meal planning), a speech therapist (to assess how muscles in the mouth and throat are working), and/or an occupational therapist (to make suggestions on seating, kitchen set up, or equipment) — can be instrumental in helping you make the right choices.
For more information, please see our section on nutrition at www.muscle.ca/eatbetter, our campaign for promoting nutrition with Safeway Canada, or check out these fact sheets available from Muscular Dystrophy UK:
Healthy Eating for Children
Nutrition and Feeding