Exercise and physical therapy for SMA

Last updated Feb. 17, 2023, by Susie Strachan
Fact-checked by Patricia Silva, PhD

Exercise can offer many benefits to people living with spinal muscular atrophy (SMA) by increasing muscle strength, flexibility, and range of motion.

Before beginning to exercise, it’s important to speak with a physical or occupational therapist to establish an exercise program to ensure maximum safety and mobility.

A physical therapy program will be tailored to the individual’s needs, starting with stretching to improve mobility and range of motion, aerobic exercise to build lung capacity and strength, and resistance training to build muscle strength.

Then other activities can be added, such as games for children, or aqua therapy to support movement in the water, or going for a ride using an adaptive bike.

It is important not to overexercise, as muscle damage caused by exercise can increase muscle weakness and atrophy. Muscles in people with SMA may not heal from injury easily and they may become fatigued, both physically and mentally.

Benefits of exercise for people with SMA

SMA is a genetic disease characterized by the loss of motor neurons, or nerve cells controlling the movement of voluntary muscles, that leads to muscle weakness or atrophy. SMA is divided into five main types — 0, 1, 2, 3, and 4, which are caused by mutations in the SMN1 gene.

Activities dependent on muscles — such as walking and sitting, to eating and breathing — can be affected.

Treatment such as exercise and physiotherapy are therefore important in reducing the symptoms of SMA. Besides impaired mobility and muscle control, posture often worsens over time as muscles shrink, resulting in balance problems.

The benefits of exercise for people with spinal muscular atrophy include strengthened muscles, improved range of motion, improved motor function, prevented contractures, improved posture and flexibility, and better mental health.

Physical therapy assistant Emily Jones said healthcare professionals such as physiotherapists need to be proactive regarding their SMA patients.

“Being evaluated by a physical therapist is the best way to start. With SMA really varying from person to person, you need your strength tested and to have your function evaluated,” she said, adding the goal of guided exercise is to increase core control, sitting balance and overall functional levels.

Physiotherapy exercises depend on the level of severity each person has. But it also depends on the age of the person. Children with SMA enjoy playing games as they work through the exercises, while adults can focus more on the reason and goals for each exercise.

For children, make exercise a game. Specialized equipment, like bikes, modified swings, and toys, also will make exercise more enjoyable for kids. Adaptive aids and braces can be used to support children during exercise activities.

"Many of us with SMA were told never to exercise, because any physical exertion of our muscles would or could exacerbate our muscle weakness," said Michael Morale, who has SMA. "Now that many of us are on Spinraza, or Evrysdi, which is another FDA-approved treatment for SMA, many of our doctors have agreed that physical therapy could show some crucial benefits. I go to physical therapy once a week, and I make this part of my weekly routine to ensure that I'm doing everything that I can to benefit my body and mind.

"Physical therapy to me is just as much mental as it is physical, and after working out with my physical therapist, I not only feel better from a physical standpoint, I'm also much stronger mentally because I know that I've done something good for my body. Sometimes my schedule or the schedule of my physical therapist will mean that we may have to skip a week every once in a while, but I consider this just a challenge that life throws our way."

Helpful exercises for people with SMA

Beyond physiotherapy exercises done in a clinical setting, many people with SMA enjoy activities such as swimming, biking, and stretching with yoga.

Jones said to choose enjoyable exercises that go beyond the weightlifting and upright functional training done in a clinical setting.

“Anything that increases your function. Have goals in mind on what you would like to improve on (realistically) and then exercises can come from there,” she said, adding that when exercising with a child, their attention span and goals will be different. Therefore, exercises will differ as well.

While it can be extremely difficult for a person who has SMA to do the more physical exercises on land, water therapy offers the chance to move their arms and legs, and enjoy the feeling of floating, with the assistance of a physical therapist. Swimming maintains muscle strength, and improves mobility and flexibility.

Remember to keep safety first:

• Keep assistive equipment, like a suction machine, at the poolside.
• Plan how to get in and out of the water. A pool that has assistive equipment, such as a Hoyer lift, can be a good option.
• Choose a pool with the right temperature. Ninety to 95 degrees Fahrenheit is optimal, but more vigorous exercises can be done in a pool maintained at 86-88 F.
• If required, wear a PDF or a neck support, and use pool noodles and other devices to help with stability in the water.

“Since starting aqua therapy in 2015, it’s become a key part of my physical, mental, and emotional well-being," said Kevin Schaefer, who has SMA. "I love the movement and relaxation that comes with being in the water. My physical therapists know my needs and capabilities, and they support me during every appointment. I have limited physical strength and I’m not concerned with ‘getting stronger,’ so much as I am having a good quality of life. Aqua therapy gives me freedoms to exercise and move that I don’t have on land.”

Biking also improves muscle strength and posture, improves balance and builds cardiovascular capacity. It’s a social activity that can be done with friends and family. Some adaptive bikes can be pedaled by hand, while tandem bicycles allow an adult to pedal while the person with SMA rides in front, behind, or beside. Bikes also can be outfitted with electric motors to assist the rider.

At its heart, yoga is a spiritual practice intended to provide harmony between the body and mind. For those living with SMA, seated yoga can help strengthen muscles, improve balance, and can provide a better outlook on life through breath work and meditation. Look for videos on YouTube that lead people through SMA-specific yoga moves, join an online adaptive yoga class, or seek out in-person adaptive yoga classes. Physiotherapists also can demonstrate and guide you through moves intended to stretch and strengthen atrophied muscles.

Exercising safely

People with SMA should work with a physical or occupational therapist to establish a safe exercise program to ensure maximum mobility and improved quality of life. For some people, orthotic braces or other adaptive aids may be necessary for SMA support during exercise or daily activities.

When losing balance, there is the danger of falling. Falls can cause loss of range of motion and further damage. Research has shown a link between the relationship of weakness, fatigue, and gait variability to falls, noting that stride-length variability was the key variable associated with falls. Fatigue also affects stride length, balance, and motor coordination.

“Make sure you have a professional with you or advising you on your exercises to improve safety,” Jones said.

Situations that have the potential to cause falls include:

• transfers, such as from a wheelchair to physiotherapy or aqua therapy equipment
• standing and walking, especially around items that can cause a trip and fall
• low-light conditions.

Exercise tips

• Build exercise into the daily schedule. Exercise on the same day of the week or at the same time of day.
• Exercise with a friend.
• Do enjoyable exercises. Explore swimming, adaptive biking, and wheelchair sports.
• Don’t worry about perfection. Missing an exercise day happens.
• Break exercise routines into shorter sets.
• For children, seek out adaptive summer camps and adaptive sports organizations.

Physical therapy for people with SMA

Jones said her work will be affected by the expected results of a Phase 3 clinical trial of the drug apitegromab by pharmaceutical company Scholar Rock, forecast for 2024, and the possible approval by the U.S. Federal Drug Administration. The purpose of the medication will be to improve motor function in people with SMA.

Jones said physiotherapy and occupational therapy should work toward improving strength and balance in preparation for the expected launch of the new therapy.

A physical therapy expert will introduce specialized exercises that can help reach functional goals. A PT or OT also ensures increased safety when working with transfers and balancing activities.

Physiotherapy exercises could include:

• core strengthening with resistance bands
• isometric contractions of a person’s trunk and neck in all directions
• forward neck and trunk flexion, trunk extension, as well as side bending bilaterally
• eccentric and concentric contractions in the same directions, to control the shortening of the muscle or returning to neutral from each direction
• improving sitting balance, to ensure safety in daily activities.

Physical therapy is just one component of living well with SMA. Others include genetic testing for a correct diagnosis, followed by disease-modifying treatments such as medications, and the potential of gene therapy.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.