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How to Stay Active While Living with Spinal Muscular Atrophy

Medically reviewed by William Morrison, MD on September 18, 2017Written by Jacquelyn Cafasso on September 18, 2017
Spinal Muscular Atrophy: How to Stay Active

Spinal muscular atrophy (SMA) affects muscles throughout the body, especially the breathing muscles, and leads to weakness in the arms and legs. Staying active under these conditions can be tough. Physical activity helps maintain healthy joints and breathing function, and can prevent obesity.

Failing to stay active may make symptoms of SMA worse. Lack of mobility can lead to:

  • trouble staying in an upright position
  • muscle tightness and contractures
  • joint pain
  • poor digestion
  • difficulty breathing

Here are some tips on how your child can stay active despite having a disability like SMA.

Eat a healthy diet

Maintain a healthy weight. A diet rich in fruits, vegetables, lean protein, and whole grains can keep your child active for longer.

Nutrition is important for maintaining muscle mass and a certain degree of strength. An experienced nutritionist or dietician can help. They can ensure that your child is getting the necessary vitamins, minerals, and nutrients to stay as healthy as possible, as well as the proper number of calories to maintain their body weight.

Don’t miss appointments with your SMA care team

It’s important that you and your child get the most out of visits with your SMA care team. Occupational and physical therapists help your child perform range of motion exercises. These exercises can help improve flexibility and function.

If your child’s joints aren’t moving through their full range of motion often, the muscles might become tight. This is called contracture. Contractures lead to discomfort, limit movement, and impair flexibility.

Occupational and physical therapists may also recommend the use of orthotics. Orthotics can lessen joint discomfort and incorrect alignment, and reduce contractures. These therapists can also guide you through resistant exercises and strength training. You can perform these at home with your child. Working with your SMA care team can help set your child up for success.

Invest in new technology

Advancements in medical equipment and computer tools have made it possible for people with SMA to perform physical activities on their own. Wheelchairs, braces, and exoskeletons can improve mobility. They can also promote active participation in home and at school.

Many wheelchair-adapted sports like soccer or tennis are now possible due to improved wheelchair technology. Adaptive tricycles can also help a child exercise and play with peers. Many communities have entire adaptive sports organizations.

The Muscular Dystrophy Association (MDA) has a national equipment program for those who can’t afford supplies. They can loan you gently used wheelchairs and other medical equipment in good condition. Contact MDA to request services or to learn more.

Try aqua therapy

Aqua therapy is a great physical activity for people with SMA. The buoyancy of the water helps to relieve pressure on the joints. It also provides for a greater range of motion of the arms and legs.

Activities such as blowing bubbles in the water can help strengthen respiratory muscles. Flotation-resistance exercises and jumping activities can improve muscle strength. Walking forward, backward, and side to side in the water can also strengthen muscles.

Enroll in summer camp

Summer camps for children with disabilities are a great way to get involved in fun activities with other kids in a safe environment. The MDA’s summer camps, for example, give kids with SMA and other diseases freedom to enjoy adventures like horseback riding and swimming. Kids can also build friendships with other kids who share the same types of disabilities.

Prevent respiratory infections

People living with SMA are at a higher risk of getting serious infections. This is due to the fact that they have weaker respiratory muscles. Staying active is even more difficult if your child gets respiratory infections that make it harder to breathe.

Make sure you’re working with a respiratory care specialist or pulmonologist. Also, make sure you have access to proper medical equipment. Equipment like a cough assist machine can prevent infections. You should also avoid contact with people who are sick.

The takeaway

The physical limitations caused by SMA and other muscular conditions don’t mean your child can’t stay active. Working with dietitians and physical and occupational therapists can help lead to success. Aqua therapy, wheelchair sports, and summer camps allow kids with disabilities to take part in fun activities at their own pace in a safe and accessible environment.

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