Enhancing the Quality of Life for Patients with Spinal Muscular Atrophy

By Sondra Forsyth

Spinal Muscular Atrophy (SMA) is the umbrella term for a group of genetic disorders that cause muscle weakness. (For a full explanation of SMA, see this thirdAGE article.)

Although some types of SMA can be fatal, people with other types of SMA typically live at least until into childhood and may even have normal life expectancies. Additionally, a rare type of SMA that begins in adulthood does not usually cause untimely death. SMA can’t be cured, but FDA-approved treatments are available.

That said, people with SMA inevitably face challenges due to weakened muscles. Many can’t walk, and some can’t sit up. Others have trouble swallowing and even breathing. Consequently, enhancing the quality of their lives is paramount. With help, they can be productive and lead satisfying lives. Here are some of the recommended tactics:

Assistive Devices

• Wheelchairs, including powered chairs, give people who can’t walk the ability to move around and participate in many activities, both work-related and pleasurable.
• Ventilators offer invaluable aid to those who have difficulty breathing.
• Specially modified computers make working and communicating possible for people with impaired muscle function.

Therapy

• Exercising in water, including participating in water sports, boosts strength even for those who can’t manage weight-bearing exercise.
• Riding a stationary bicycle is beneficial.
• Working on an elliptical machine is another good activity for increasing muscle strength.
• Stretching and strengthening exercises, often with the help of physical therapists, are helpful.

Overall, while a diagnosis of SMA can be devastating, parents and patients themselves should not lose hope that a full and fulfilling life is possible.

For more information, visit:

• The Role of Exercise in Spinal Muscular Atrophy
• Spinal Muscular Atrophy Foundation