As an adult living with spinal muscular atrophy (SMA), it can be hard to know how best to take care of your health. Because of the variability of spinal muscular atrophy symptoms, even among adults with the same type of SMA, general wellness and health will look different for everyone. The needs of someone who is ambulatory (able to walk) will be different from someone who uses a wheelchair. Regardless of your physical function, there are some basic considerations that can help you stay your healthiest and feel your best.
SMA is a rare genetic disease characterized by progressive muscle weakness. Depending on SMA type, severity, and age of onset, muscle weakness can cause respiratory difficulties, inability to stand or walk, and problems chewing and swallowing.
There are five main types of SMA. Ranging from the most to least severe, they are type 0, type 1 (Werdnig-Hoffmann disease), type 2, type 3 (Kugelberg-Welander disease), and type 4 (adult onset). These types of SMA are caused by a genetic mutation that impacts the ability of motor neurons (a type of nerve cell) to transmit signals from the brain and spinal cord to the muscles. The severity of SMA is determined by the presence of another gene. Learn more about the genetic causes of spinal muscular atrophy.
One way to support your well-being is to make SMA health care part of your routine. For individuals who require respiratory support or other significant interventions, making health care part of life is a given. However, for adults with milder forms of SMA, such as type 3 or 4, finding appropriate health care can be more challenging.
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, and many found it difficult to find appropriate care for their needs.
Cure SMA recommends adults with SMA assemble a multidisciplinary team of health professionals with one provider serving as a central coordinator. A multidisciplinary team can help manage health considerations directly related to SMA and complications related to aging. Depending on your needs, your health care team can include a neurologist, pulmonologist, and orthopedist, as well as a physical therapist, nutritionist, or mental health professional. Learn more about assembling a health care team and making treatment decisions in Treatment Options for Adults With SMA.
If you are being treated with Spinraza (nusinersen) or any other medications, it’s important that you adhere to the treatment regimen. Learn more about sticking with treatments in Tips for Staying on SMA Therapies.
There is 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 dietician 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 are able to chew and swallow may still face some nutrition challenges. Below are examples of some concerns adults with SMA may want to consider:
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, primarily because their calorie intake exceeded their needs. Being overweight can increase the risk of developing illnesses like diabetes and cause extra strain on the hips and back. For those who become overweight while ambulatory, obesity can contribute to the loss of walking abilities.
Acid reflux caused by gastroesophageal reflux disease (GERD) occasionally impacts people with SMA type 2 and 3. Eating smaller meals; minimizing spicy, acidic, or fatty foods; and avoiding laying down after meals can help minimize acid reflex.
People with SMA, especially those who are not ambulatory, are at risk for osteoporosis and bone fractures. Osteoporosis and fractures can be the result of disuse of limbs and low vitamin D levels. Over a third of people with SMA types 2 and 3 have low vitamin D levels. There is also evidence that osteoporosis and fractures may be related to the lack of SMN protein.
Adequate vitamin D and calcium intake is important for strengthening bones and minimizing risk of fracture. Your doctor can help you determine if your vitamin D and calcium intake are sufficient. Some doctors recommend testing blood levels for vitamin D and may prescribe supplements if levels are low. Your doctor may also make nutrition recommendations for consuming enough calcium or recommend a supplement.
Deciding whether or how to exercise with spinal muscular atrophy can be confusing. In the past, many physicians have cautioned people with neuromuscular disorders against physical activity for fear of damaging muscles. Today, we have some evidence that exercise may benefit people with SMA and other neuromuscular diseases. However, more research is needed to understand the benefits and long-term impact of exercise on SMA, especially among adults.
While studies on spinal muscular atrophy and exercise are extremely limited, there is some evidence to support swimming, weight-bearing aerobic exercise (brisk walking or adaptive land sports), resistance training, and physical therapy. Some of these forms of exercise are also included in the International Standard of Care Committee for Spinal Muscular Atrophy’s 2007 report on standard of care for SMA.
It’s important to note that the studies discussed below are not conclusive. Some are small and do not include participants who represent the full spectrum of SMA. Some are animal studies that are paving the way for future human studies. For these reasons, it’s especially important to speak with your doctor if you’re interested in trying any of the following types of exercise.
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.
A 2016 study from the Journal of Physiology evaluated the benefits of swimming over 10 months on mice bred to mimic SMA type 3. The study found evidence of the following benefits from swimming:
A clinical trial is currently underway to assess the benefits of swimming for children ages 5 to10 with SMA type 2 and type 3.
Running or jogging may not be safe for everyone with SMA who is ambulatory. Talk to your doctor about other weight-bearing aerobic exercise options.
There is very limited data on the impact of resistance training on people with SMA. Three small studies of adults with neuromuscular disorders (including SMA) from the late 1980s and 1990s found evidence that resistance training can improve muscle strength and motor function.
More recently, researchers from the University of Utah conducted a study of nine children with SMA types 2 and 3 to evaluate the benefits of resistance training. While study participants did not achieve significant increases in strength measures, they did achieve improvements in motor function. One participant went from being unable to climb stairs at the beginning of the study to being able to climb steps independently. The small size of the study prevents the researchers from drawing broad conclusions about resistance training and SMA, but the results do support further study into the potential benefits of strength training.
The International Standard of Care Committee for Spinal Muscular Atrophy published recommendations supporting physical therapy (PT) in 2007. The report recommends physical therapy interventions specifically for individuals with SMA who can sit or walk.
For sitters, physical therapy often includes stretching and bracing to prevent or manage joint contractures. Physical therapy may also include exercises to strengthen muscles. PT is also used to identify appropriate mobility aids and to help people use them effectively.
For walkers, physical therapy can help to preserve walking ability and protect against joint contractures. Physical therapists can also identify adaptive devices like orthotics that can support walking and other adaptive devices that can help with mobility.
Read more about physical therapy in Physical Therapy for SMA: How to Get the Most out of PT.
Living with a chronic health condition can take a toll on your mental and emotional health. As many as a third of people with a chronic condition experience depression. Depression is more likely to occur in cases where an illness causes a major life disruption or disability. For some adults with SMA, loss of physical function or the fear of losing function can cause depression. A participant in the 2019 Australian study commented, “When I have to fully rely on someone, that’s when I can see … depression kicking in.”
There are many proactive steps you can take to support your mental and emotional health and improve your quality of life, including:
Identifying positive coping strategies for the challenges of life with a chronic illness can help reduce stress and depression. A study of 107 adults with multiple sclerosis (MS) — another illness where people face progressive disability — found that positive coping mechanisms like acceptance were associated with better quality of life. Negative coping mechanisms like denial were associated with greater stress.
Developing relationships with other people living with SMA can help avoid feelings of isolation. “Having someone a lot older to be a … peer mentor has helped me to realize what’s possible,” a participant in the Australian study shared. Another study participant commented on the value of connecting with other people with SMA: “They know what I’m going through now, so there’s more of an element of trust.”
You can connect with others living with SMA on mySMAteam or through in-person groups. Cure SMA has 36 volunteer-led 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. They can refer you to a mental health provider who can work with you to identify the appropriate treatment options. You can also speak with a mental health provider even if you’re not experiencing symptoms of depression. A mental health provider can help you manage any difficult emotions you may have in relation to spinal muscular atrophy and help you proactively identify positive coping mechanisms that can improve your quality of life.
Learn more about ways to take care of yourself with SMA with these related articles:
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