Getting good nutrition every day can be a challenge for anyone. For people living with spinal muscular atrophy (SMA), it can be even more complicated. The good news is that a registered dietitian or a registered dietitian nutritionist can help you get proper nutrition and improve your quality of life.

Spinal muscular atrophy is a genetic condition that affects nerve cells in your spine that control movement. SMA is progressive, meaning it gets worse over time and causes your muscles to weaken.

Talking with a dietary specialist about nutrition and health can be an important step in helping you thrive while living with SMA. If you haven’t seen a dietitian lately, ask your doctor if you should be referred for a check-up.

Choosing Softer Foods

Problems with swallowing can make it harder to get proper nutrition. This is especially true for those living with SMA. Since SMA is a neuromuscular disorder that can cause muscle weakness throughout the body, it can also affect breathing, chewing, and swallowing. Some people with SMA may develop a swallowing dysfunction over time, or may become tired during meals, leading to not eating enough.

It’s important to tell your doctor if you notice new or worsening problems with feeding, chewing, or swallowing, especially if these changes come with weight loss.

Tell your doctor if you notice new or worsening problems with feeding, chewing, or swallowing, especially if you notice weight loss.

Your doctor may refer you to a speech-language pathologist (SLP), a physical therapist (PT), or an occupational therapist (OT). These specialists might recommend utensils, tools, or techniques that make it easier for you to eat so you can get the proper nutrition. Your SLP or OT might also suggest adjusting food textures to make swallowing safer and easier, such as:

• Easy-to-chew foods (not tough, chewy, stringy, fibrous, or crunchy)
• Soft foods (foods you can cut with the side of a fork, like fish or bananas)
• Minced foods (finely chopped, such as ground beef, creamed corn, or rice)
• Pureed foods (smooth, thick liquids like yogurt or mashed potatoes)
• Thickened liquids (foods with a “nectarlike” consistency, like tomato juice or smoothies)

Some foods can be especially hard to chew or swallow and should be avoided if eating is difficult. These might include:

• Raw vegetables or fruits
• Large pieces of meat with cartilage or tendons
• Sticky foods like peanut butter or sticky rice

If you have difficulty chewing, avoid foods like bread, seeds, peanut butter, and meat with cartilage or tendons.

Choosing softer foods can help make eating and swallowing easier. If you are having more trouble than usual, you may want to switch to softer foods while you wait to see a dietary specialist.

If you aren’t able to eat for an entire day, you may need to go to the emergency room or an urgent care center, if your doctor is not available. This is because people with SMA can’t tolerate fasting as well as those with more muscle reserves, especially if they are sick.

If you have trouble swallowing, it’s also important to stay upright for 30 minutes to an hour after eating or drinking. If you need to lie down after eating or drinking, keep your head raised at least 30 to 45 degrees to help food and liquid go down the right way.

Choosing Low-Fat Options

For some people living with SMA, a lower-fat diet may help. A study in mice found that a low-fat diet increased survival rates in a mouse model of spinal muscular atrophy, but it’s still unclear if these results apply to humans with SMA. More research is needed.

Adults have different nutritional requirements than children with SMA. Children, especially those under the age of 2, need a certain minimum fat content in their diets for healthy brain growth and other essential functions. However, some kids with SMA have trouble digesting fat. This is one reason why it’s critical for parents or caregivers to consult closely with a registered dietitian before making major changes to the diet of someone with SMA.

Some people with SMA who are experiencing gastroesophageal reflux disease (GERD) may be advised to try a low-fat diet. GERD is a chronic condition — reversible in some cases — where stomach acid flows back into the esophagus. This condition can cause the sensation of “heartburn.”

Nutritional guidance may vary based on your subtype of SMA and other factors. GERD affects many people with SMA, especially SMA type 1. A low-fat diet, especially one that avoids fried and greasy foods, may help calm GERD symptoms.

Acidic foods like tomato sauce and citrus may also cause discomfort for some people, so a trial of eliminating or reducing these foods might be helpful for people with GERD symptoms.

Choosing a Diet Regimen

People with SMA might try a low-fat diet to try to lose weight as well. People with SMA can sometimes experience overnutrition due to a sedentary lifestyle and challenges with exercising. Caregivers might also feed people with SMA too many calories; people with SMA may have reduced or different nutritional needs due to their reduced muscle mass and physical activity levels.

It’s important to work with a healthcare professional to develop a nutrition plan that meets your needs safely before making dietary changes on your own. In some cases, losing weight may be better supported by reducing calories, carbohydrates, or sugars, in consultation with a nutritionist.

There’s no single diet proven to improve outcomes for all people living with SMA, and some can even be harmful. For example, “elemental diets,” made of isolated amino acids and other basic food components, may actually be dangerous for someone with SMA.

On the other hand, some healthcare providers may recommend supplements as part of your nutrition therapy to make sure you’re getting enough vitamins and nutrients.

Ask your doctor about the safest way to reach and maintain a healthy body weight based on your individual, family, and medical history.

Eating Smaller, More Frequent Meals

Many people find that eating small, more frequent meals instead of three larger ones helps them manage appetite, weight gain, blood sugar, and energy levels. Some medical providers suggest that children with SMA may tolerate smaller, more frequent feedings better than larger meals.

This eating schedule may also help reduce acid reflux, bloating, or fatigue after meals. As long as small, frequent meals don’t lead to overeating, this may be a helpful adjustment to consider.

Some children with SMA may better tolerate smaller, more frequent feedings better than fewer, larger meals.

It’s also important to remember that people with SMA don’t tolerate fasting well, especially during illness. Eating regularly and staying hydrated is especially important when sick or recovering from surgery.

Collaborating With Your Team

Eating well and staying as physically active as possible can improve the quality of life for people living with SMA. Work with your healthcare team to create a nutrition plan that supports your overall health.

Here are some general healthy eating tips to keep in mind:

• Choose whole vegetables and fruits (cook or puree them to make them easier to eat).
• Choose whole grains.
• Include lean proteins.
• Add healthy fats.
• Limit foods and drinks with added sugars.

Talk With Others Who Understand

On mySMAteam, people share their experiences with SMA, get advice, and find support from others who understand.

Have mealtime tricks or recipe tips to share? Let others know in the comments below.