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As an adult living with spinal muscular atrophy (SMA), it can be hard to know how best to take care of your mental and physical health. Because SMA symptoms are different for each individual — even among adults with the same type of SMA — health and well-being needs can vary. For instance, the needs of someone who can walk will be different from someone who uses a wheelchair.
Regardless of your physical function, there are ways to help you stay your healthiest and feel your best.
SMA is a rare genetic disease characterized by muscle weakness that gets worse over time. Depending on your SMA type and severity, muscle weakness can cause respiratory difficulties, inability to stand or walk, and problems chewing and swallowing.
Here are the five main types of SMA, ranging from the most severe to the least severe:
These types of SMA are caused by a genetic mutation (a gene change) that impacts the ability of motor neurons — the nerve cells that control muscles — to stay healthy and function properly.
A 2019 study of 25 Australian adults with SMA and their family members found that participants were generally dissatisfied with the health care they received. Many found it difficult to find appropriate care for their needs.
Cure SMA recommends adults with SMA assemble a multidisciplinary team of doctors with one provider serving as a central coordinator. A multidisciplinary team can help manage SMA symptoms and complications that may develop over time. Depending on your needs, your medical team may include a neurologist (brain specialist), pulmonologist (lung specialist), and orthopedist (bone and muscle specialist).
Read more about treatment options for adults with SMA.
Along with medical care, many people with SMA may also benefit from working with a physical therapist, an occupational therapist, a nutritionist or registered dietitian, and a mental health professional to support healthy habits that can improve well-being and quality of life.
Here are some strategies to help you manage your nutrition, exercise, and mental health effectively with SMA.
There’s no single nutrition plan for people with SMA. What foods to eat, and how to eat them, will depend greatly on the type of SMA you have and your ability to chew and swallow. A registered dietitian with knowledge of SMA can help develop an individualized plan best suited to your nutritional needs and the methods by which you eat.
Adults with SMA who can chew and swallow may still run into some dietary challenges. A dietitian can help manage these issues.
High weight or obesity is sometimes seen among those with SMA type 2 and type 3. A 2010 study of 53 adults and children with SMA type 2 and 3 found that individuals who had limited mobility were at risk of becoming obese because their calorie intake exceeded their needs.
Being overweight can increase the risk of developing diabetes or cardiovascular (heart) disease and cause extra strain on the hips and back. For people who can walk, becoming overweight might lead to difficulty walking.
Acid reflux caused by gastroesophageal reflux disease (GERD) occasionally affects people with SMA type 2 and 3. Eating smaller meals, minimizing spicy, acidic, or fatty foods, and avoiding lying down after meals can help minimize acid reflux.
People with SMA, especially those who are in wheelchairs or bedridden, have a risk of developing low bone density. Osteoporosis, or weak bones, and fractures can happen from sitting too much and not using your arms and legs. Low calcium or vitamin D levels can also be harmful to bones. People with SMA types 2 and 3 have low vitamin D levels. There is also evidence that osteoporosis and fractures may be related to SMA itself.
Always get medical advice before taking supplements to avoid unwanted side effects. Your doctor can determine your vitamin D and calcium levels with a blood test and may recommend supplements if levels are low. Your doctor might also suggest changes to your diet to increase your calcium levels and other nutrients you might be lacking.
In the past, many physicians cautioned people with neuromuscular disorders such as SMA against physical exercise for fear of damaging muscles. Today, there is evidence that supports the benefits of exercise for some people with SMA, although research is still limited.
Talk with your doctor about physical activity and exercise to find out if it is recommended for you. If so, your doctor can give you a referral for a physical therapist to help design an appropriate exercise program.
While studies on spinal muscular atrophy and exercise are extremely limited, there is some evidence to support swimming, weight-bearing aerobic exercise (walking or modified land sports), resistance training, and physical therapy (PT). Some of these forms of exercise are also included in the International Standard of Care Committee for Spinal Muscular Atrophy’s 2007 report on the standard of care for SMA.
Everyone with SMA is different, and what’s safe and beneficial for one person might be dangerous for another. Talk with your doctor if you’re interested in trying any of the following types of exercise.
PT can include stretching exercises for people who can sit but have limited mobility. These exercises can help strengthen muscles and improve joint health. In some cases, a physical therapist may be able to train a caregiver of someone with SMA to aid in stretching for regular exercise at home. PT is also used to identify appropriate mobility devices and to help people use them effectively.
For walkers, PT can help preserve walking ability, build upper body strength and range of motion, and protect against joint contractures. Physical therapists can also recommend adaptive devices to improve mobility, such as orthotics (braces) that can support walking.
Read more about how to get the most out of PT.
The International Standard of Care Committee for Spinal Muscular Atrophy recommends swimming to support fitness and endurance for people with SMA who can sit but not walk and for people with SMA who can walk.
For those who can walk, brisk walking or jogging may be beneficial forms of weight-bearing aerobic exercise. Talk to your doctor before starting any type of exercise.
There is very limited data on the health benefits of resistance training for people with SMA. Talk to your doctor about whether strength training might be a safe way and effective way for you to improve muscle strength and motor function.
Living with an ongoing health condition can take a toll on your mental and emotional well-being. As many as one-third of people with a chronic illness experience depression, particularly when an illness causes a major life disruption or disability. For some adults and adolescents with SMA, loss of physical function, the fear of losing function, or social isolation can cause depression.
You can take steps to support your mental and emotional health and improve your quality of life, including:
Techniques such as mindfulness training and breathing exercises can help reduce negative thoughts, stress, and anxiety, and help improve daily activities, sleep, and a feeling of well-being. There are numerous apps for guided meditations and relaxation exercises that can help people with SMA improve their mindset.
Developing relationships with other people living with SMA can help avoid feelings of isolation. It can be helpful to share experiences on managing daily life with SMA and gain insight from others who know what you are going through.
You can connect with others living with SMA on mySMAteam or through in-person groups. Cure SMA has 36 chapters across the United States that provide support for individuals with SMA and their families.
Speak with your doctor if you are experiencing symptoms of depression or other difficult feelings. They can refer you to a mental health provider who can provide psychological counseling or recommend other treatment options. SMA community support groups can be a great resource.
On mySMAteam, the social network for people with spinal muscular atrophy and their loved ones, more than 2,500 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.
Do you have tips for managing nutrition, exercise, or mental health with SMA? Share your advice in the comments below, or start a conversation by posting on your Activities page.
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Luc Jasmin, M.D., Ph.D., FRCS (C), FACS
is a board-certified neurosurgery specialist.
Learn more about him here.
Alison Channon
has nearly a decade of experience writing about chronic health conditions, mental health, and women's health.
Learn more about her here.
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