Exercise and physical therapy are key to successfully managing many aspects of spinal muscular atrophy (SMA). This rare neuromuscular disease causes progressive muscle weakness, meaning it worsens over time. Depending on your SMA type, its severity, and your age when it started, this condition can cause problems with motor function, mobility, chewing and swallowing, and breathing.
In 2007, the International Standard of Care Committee for Spinal Muscular Atrophy published recommendations supporting physical therapy as part of SMA treatment. The committee particularly recommended physical therapy for people with SMA who can sit, stand, and walk. Individuals with those abilities generally fall into three of the five primary spinal muscular atrophy types.
Ranging from the most to the least severe, these forms include type 2, type 3 (Kugelberg-Welander disease), and type 4 – adult onset SMA. Historically, people with type 0 or type 1 (Werdnig-Hoffmann disease) hadn’t developed the motor skills or muscle strength to sit independently, stand, or walk. However, with new treatments for SMA available, it’s unknown how the prognosis (outlook) for each SMA type may change.
Physical therapy (also called physiotherapy or PT) aims to help people manage movement dysfunction, improve functional ability, maintain abilities, or prevent future disability. Physical therapy is often prescribed after an injury or surgery and can also be an important part of treatment for children and adults with SMA. People who have physical disabilities from other kinds of neuromuscular disorders may also receive PT.
Physical therapy is designed to improve functional ability, preserve abilities, and prevent future disabilities.
In the years following the release of the 2007 recommendations, additional research findings have supported physical therapy for SMA treatment. Ongoing studies include a clinical trial of water-based therapy for children with SMA types 2 and 3. More research on physical therapy along with new disease-modifying drugs for SMA could change how the disease is treated in coming years.
Physical therapy can help address many of the symptoms people with SMA experience, including weakness, contractures (permanent shortening and tightening of joints), scoliosis, and walking problems.
Physical therapy can be an important part of treatment for children and adults with spinal muscular atrophy.
Muscle weakness, also known as hypotonia, is the primary symptom of spinal muscular atrophy. PT exercises, including water-based therapy and adaptive sports (activities modified for people with disabilities) like horseback riding, can help maintain muscle strength and support stamina.
Range of motion exercises can help maintain flexibility and reduce the risk of contractures. Preventing contractures by exercising muscles and joints through their full range of motion can improve mobility and help avoid pain from tight, inflexible joints. Flexibility and range of motion are important for everyone with SMA, regardless of mobility.
Physical therapy can help people with SMA improve their flexibility and range of motion, preventing painful joint contractures.
About half of people with SMA type 3 develop scoliosis, which affects nearly all children with types 1 and 2. Physical therapy may help slow the progression of scoliosis in individuals with SMA, although data is limited.
Physical therapy can help people with SMA who are able to walk maintain their mobility longer and walk more safely. PT to support walking and balance and prevent falls may be especially useful for people with type 3 whose leg muscles are starting to get weaker.
Nonambulatory people with SMA are at greater risk of osteoporosis and bone fractures, partly because they’re no longer using their limbs. Weight-bearing exercises can help strengthen bones and improve breathing and bowel function. People with SMA who can’t stand on their own can use mobility devices called standers to get upright, which can help strengthen their bones.
Certain PT techniques may help people living with SMA feel their best and slow the progression of their disease.
Many types of physical therapy techniques can help people living with SMA feel their best and slow the progression of their disease.
Several forms of physical therapy interventions can be used, depending on physical ability. Below, we offer details about some of the types that might be recommended for people with SMA.
Aquatic therapy, also known as hydrotherapy or water therapy, is among the guidelines’ treatment recommendations for sitters and walkers. Aquatic therapy is often advised for people with mobility limitations because water’s buoyancy makes it possible to perform certain actions in a pool that couldn’t be done on land.
Pool exercises for SMA vary based on functional ability. For people with type 3, aquatic therapy can include activities designed to support walking, balance, flexibility, strength, aerobic fitness, and posture. A person with type 1 may work on improving respiratory function by blowing pingpong balls in the water.
Occupational therapists focus on helping people participate in daily activities like dressing and grooming, using a computer, or completing tasks at work and at home. Occupational therapy can help people with SMA relearn how to perform certain activities as they lose muscle strength. This might include finding alternative ways to put on clothing or learning to use assistive devices.
Bracing is a technique for supporting weak muscles and maintaining flexibility. Braces and splints can be used to support standing and prevent contractures in people with SMA who can stand but not walk — usually those with SMA type 2. Orthotics for the lower limbs (sometimes called orthoses) can be combined with a walker or another mobility device for people with enough muscle strength to walk using these aids.
Proper positioning for those using a wheelchair is particularly important to support the spine and reduce the risk of scoliosis. This can be done by adapting the wheelchair or using braces for the spine. Spinal braces are also often recommended to slow the progression of scoliosis.
People with neuromuscular disorders like SMA often unconsciously adapt their gait when they have muscle weakness. They may slow their speed, shorten their stride, or change the position of their hips, pelvis, and feet. These modifications can put extra strain on other parts of the body and affect balance and long-term walking ability.
Gait training, a form of physical therapy designed to improve walking ability, can help people with SMA reduce safety risks from poor balance and improve their gait to conserve energy. Gait training can also be used to help people learn to walk with the support of a mobility device.
Identifying the right mobility or adaptive devices and teaching people to use them properly is a critical part of PT for SMA. Depending on a person’s needs, a physical therapist may recommend a cane, walker, or wheelchair for daily life. Standers provide another mobility option for those who can sit but not walk.
Physical therapy will look different for every person with SMA. No matter your specific needs, here are some tips to help you get the most out of your exercise program.
A physical therapist can be a key player in your multidisciplinary health care team. Working with a physical therapist who understands the needs of a person with SMA can help ensure you get the most out of physical therapy. Neurologic physical therapists have special training in treating people with conditions like spinal muscular dystrophy, multiple sclerosis, and Parkinson’s disease. Your doctor may be able to recommend a neurologic PT, or you can find one using the American Physical Therapy Association’s provider directory.
Working with a physical therapist who understands the needs of a person with SMA can help ensure you get the most out of physical therapy.
Depending on your recommended PT routine, you may need to attend regular appointments or perform exercises at home. Keeping your appointments and being consistent with at-home home routines can help you realize the full benefits of physical therapy.
Don’t be afraid to speak up if you’re experiencing pain or unable to complete any of the at-home exercises your PT has recommended. Your physical or occupational therapist is there to help you improve your physical function and quality of life. If something isn’t working, they’ll make adjustments to help you get better results.
On mySMAteam, the social network for people with SMA and their loved ones, more than 2,400 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.
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I share Alison’s experiences with PT. I am male, 75 years old, have adult onset, distal SMA, diagnosed about 12 years ago. So far, it has only affected my legs
Like Alison, I also broke my hip in a… read more
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