Exercise and physical therapy (PT) are important for managing many aspects of spinal muscular atrophy (SMA). This rare neuromuscular disease causes progressive muscle weakness, meaning it gets worse over time. Depending on the type of SMA you have, how serious it is, and how old you were when it started, it can cause trouble with movement, walking, chewing, swallowing, and breathing.

In 2007, the International Standard of Care Committee for Spinal Muscular Atrophy recommended PT as a treatment for SMA, especially for people who can sit, stand, and walk. People with those abilities usually fit into three of the five main types of SMA.

The forms, from most to least severe, are type 2, type 3 (also known as Kugelberg-Welander disease), and type 4 (also called adult-onset SMA). In the past, people with type 0 or type 1 (also called Werdnig-Hoffmann disease) hadn’t developed the motor skills or muscle strength to sit, stand, or walk. With new treatments for SMA, it’s not yet clear how they might affect the outlook for each type.

Physical Therapy for Spinal Muscular Atrophy

PT helps people stay active, keep their abilities, and avoid new problems as time goes on. It’s 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 go to PT.

Physical therapy can be an important part of treatment for children and adults with spinal muscular atrophy.

After the release of the 2007 recommendations, additional research findings have supported PT for SMA treatment. Studies have included a clinical trial of water-based therapy for children with SMA types 2 and 3. More research on PT and new drugs for SMA could change treatment in the future.

PT can address many common problems that people with SMA face, such as weakness, contractures (tight joints), scoliosis (a curved spine), and trouble walking.

Muscle Weakness

Hypotonia (muscle weakness) is the main symptom of SMA. PT exercises, including aquatic (water-based) therapy and adaptive sports — modified activities for people with disabilities, such as horseback riding — can help with muscle strength and support stamina.

Contractures

Range-of-motion exercises, such as stretching, 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 movement and help avoid pain from tight, inflexible joints. Flexibility and range of motion are important for everyone with SMA, no matter how well they can move around.

Scoliosis

Scoliosis affects about half of people with SMA type 3 and nearly all children with types 1 and 2. Although more research is needed, PT might slow the curving of the spine in people with SMA.

Walking and Balance

For people with type 3 SMA whose leg muscles are getting weaker, physical therapy can improve balance, prevent falls, and help them walk more safely for a longer time.

Physical therapy can help people with SMA improve their flexibility and range of motion, preventing painful joint contractures.

Bone Weakness

People with SMA who aren’t able to move around on their own have a higher risk of osteoporosis (weak bones) and fractures (breaks). This is partly because they aren’t using their arms and legs as much. Weight-bearing exercises can help make bones stronger and may also improve breathing and bowel function. People who can’t stand on their own can use a mobility device called a stander to help get them upright, which can also support bone strength.

Certain PT techniques may help people living with SMA feel better and slow the progression of their disease.

5 Types of Physical Therapy for Spinal Muscular Atrophy

Different types of PT can be used, depending on how much a person can move. Here are some types that might be recommended for people with SMA.

1. Aquatic Therapy

Aquatic therapy — also known as hydrotherapy or water therapy — is among the guidelines’ treatment recommendations for sitters and walkers. Aquatic therapy is often recommended for people who can’t get around too well. Water supports your body, making it easier to do movements in the pool that might be too hard on land.

Pool exercises for people with SMA can be different depending on how well they can move around. For people with type 3, activities can be designed to support walking, balance, flexibility, strength, aerobic fitness, and posture. A person with type 1 may work their breathing by blowing pingpong balls in the water.

2. Occupational Therapy

Occupational therapists focus on helping people participate in daily activities. Therapists can help with dressing and grooming, using a computer, or completing tasks at work and home. Occupational therapy can help people with SMA relearn how to perform certain activities as they lose muscle strength. These tasks may include finding different ways to get dressed or learning to use assistive devices.

Many types of physical therapy techniques can help people living with SMA feel their best and slow the progression of their disease.

3. Bracing and Positioning

Bracing is a technique for supporting weak muscles and staying flexible. 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.

4. Gait Training

People with neuromuscular conditions like SMA often change how they walk without realizing it. They may walk more slowly, walk with shorter steps, or change the position of their hips, pelvis, and feet. These adjustments can put extra strain on other parts of the body and affect balance and long-term walking.

Gait training, which focuses on how a person walks, can be useful for people with SMA who need support with walking or balance. This type of PT can reduce safety risks from poor balance and improve their gait to save energy. Gait training can also be used to help people learn to walk with the support of a mobility device.

5. Mobility Devices

Finding the right mobility or adaptive devices is a key part of PT for SMA. Depending on a person’s needs, a physical therapist may recommend a cane, walker, or wheelchair. Standers are another mobility option for those who can sit but not walk.

Tips for Physical Therapy Success

PT is different for every person with SMA. No matter what you need, here are some tips to help you get the most out of your exercise program.

Find the Right Physical Therapist

A physical therapist is an important player in your multidisciplinary healthcare team. Working with a physical therapist who understands the needs of a person with SMA can help ensure you get the most out of PT. 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.

Be Consistent

Depending on your recommended PT routine, you may need to go to regular appointments or perform exercises at home. Keeping your appointments and being consistent with at-home routines can help you get the most out of PT.

Share Your Concerns

Don’t be afraid to speak up if you’re in pain or if you can’t do the at-home exercises your physical therapist 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.

Talk With Others Who Understand

On mySMAteam, the social network for people with SMA and their loved ones, more than 2,700 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.

Have you or a loved one ever used physical therapy to treat SMA? Share your experience in the comments below, or start a conversation by posting on your Activities page.