Living With Spinal Muscular Atrophy
The loss of motor neurons leads to weakness and atrophy of the muscles most used during daily activities, like crawling, walking, sitting up, or controlling head movements. Muscles used for breathing and swallowing can also be affected in spinal muscular atrophy (SMA).
As a result, living with SMA can affect the life of patients and their families in many different ways, from nutrition to travel, and they may need specialized equipment to support them along the way.
One therapeutic option that may be recommended to SMA patients is exercise. SMA patients need to work with a physical or occupational therapist to establish a safe exercise program to ensure maximum mobility and improved quality of life. In general, a likely exercise program will involve stretching to improve mobility and range of motion, aerobic exercise to build lung capacity and strength, and resistance training to build muscle strength.
SMA patients often need specialized equipment to help with breathing, coughing, and swallowing, to support them in daily activities and to increase their mobility. Equipment needs depend on the severity of the condition. It can range from simple walking aids, such as braces and grab bars, to electric wheelchairs, bath chairs, breathing and feeding equipment, and car beds for traveling.
Palliative care is specialized medical care for people with serious diseases like SMA, focused on providing relief from the symptoms and stress of the disease. The word “palliative” means soothing, calming and pain relieving. Whether used in SMA or in other disease management, palliative care is about comfort. Its goal is to improve quality of life for both the patient and the family.
SMA patients may be intimidated by the thought of travel, but several ideas can make traveling easier for people with SMA. The key is to plan travel well in advance, with reservations for the flight, accommodations, transportation, and special equipment made a few months prior to the trip. It’s also a good idea to confirm reservations one or two weeks prior to the date of travel.