Getting good nutrition on a daily basis can be a challenge for anyone. For those living with spinal muscular atrophy (SMA), it can be more complicated. The good news is that in 2012, the Affordable Care Act mandated that most insurance plans cover consultations and visits with a registered dietitian or nutritionist for those at higher risk of chronic illness.
Talking with a professional nutrition specialist can be an important step in making sure you thrive while living with SMA. If you haven’t had an appointment lately, ask your doctor if you should be referred to a dietitian for a check-up.
Challenges with swallowing (sometimes called dysphagia) can cause someone to not get adequate nutrition. This is especially true for those living with SMA. Since SMA is a neuromuscular condition that can cause muscle weakness throughout the body, it can also affect breathing, chewing, and swallowing. Someone with SMA might develop a swallowing dysfunction over time, or simply become fatigued during the process of eating, leading to not eating enough.
Therefore, it is crucial to tell your doctor if you notice new or worsening problems with feeding, chewing, or swallowing, especially if it’s happening alongside weight loss.
Your doctor may refer you to a speech-language pathologist (SLP) or an occupational therapist (OT). A therapist might recommend eating with easier-to-use utensils, or procedures that can help you get optimal nutrition on a daily basis. Your SLP or OT might also suggest you focus on eating foods such as:
Foods that can be difficult to chew and swallow should be avoided by people having difficulty eating. These include:
Choosing softer foods can help make eating and swallowing easier. If you are having a tougher time than usual eating, you may want to try switching to foods that are easier to eat while you wait to see a specialist.
If you are not able to eat food for an entire day, you might need to go to an emergency room or urgent care facility, if your doctor is not immediately available. This is because people with SMA cannot tolerate fasting as well as someone with more muscle reserves, especially if they are sick.
If you have trouble swallowing, it is also important to not lay down flat for 30 minutes to an hour after eating or drinking. When laying down after eating or drinking, keep your head elevated between at least 30 or 45 degrees (or more) to help make sure food goes down the right way.
Choosing a diet lower in fats can be a good idea for some people. But, people with SMA have to carefully consider a few things.
All children, especially those under the age of 2, need a certain minimum fat content in their diets for healthy brain growth. This is one reason why it is critical for parents or caregivers to consult closely with a registered dietitian before making major alterations to the diet of someone with SMA.
Some people with SMA may be advised to try a low-fat diet, especially if they are experiencing gastroesophageal reflux disease (GERD). 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.”
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.
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 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 activity levels.
Again, you should consult a dietitian before deciding on a dieting regimen. There may be other ways to lose weight that might work better for you, like reducing calories, carbohydrates, or sugars.
There is no one diet that has been proven to improve outcomes for all people experiencing SMA, and some are in fact harmful. “Elemental diets,” consisting of separated amino acids and other basic food components, could be harmful to someone with SMA. Ask your doctor about the best way to achieve and maintain an ideal body weight for your individual, family, and medical history.
The science is inconclusive, but many people claim that eating small, frequent meals instead of three large meals helps them control their appetite, weight gain, blood glucose levels, and energy levels. Some medical providers suggest that children with SMA may tolerate smaller, more frequent feedings better than large ones.
This eating schedule may also help some people better deal with acid reflux, feelings of “bloating” after meals, or fatigue from eating large meals. As long as frequent, small meals do not lead to overeating (eating more calories than a body needs in a day), this may be a change to consider.
It is also important to remember that people with SMA often have a limited ability to fast, especially when they are ill. Eating and drinking frequently is essential when ill or after surgery for optimal recovery.
Eating well and being physically active, as tolerated, improves everyone’s quality of life. Make sure to collaborate with your health care team to create a nutritious eating plan that will help you thrive.
And, remember these healthy eating tips:
On mySMAteam, the social network for people with SMA and their loved ones, more than 1,200 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.
Have mealtime tricks or recipe tips to share? Share your experience in the comments below, or start a conversation by posting on your Activities page.