Susan Ruediger always felt clumsy growing up. She got kicked out of a ballet class because she couldn't point her toes, and in her early 20s, she gave up running after falling and breaking her wrist.
Some of her physical challenges were related to her condition, Charcot-Marie-Tooth (CMT) disease, which she was diagnosed with at age 2. The progressive inherited neuropathy causes weakness, starting in the feet and hands, and can at times cause patients to feel pain and swelling. As an adult, Ruediger found ways to overcome some of her physical limitations through certain types of exercises. “I'm keeping myself stronger and upright and mobile,” says Ruediger, 53, of Annapolis, MD, who kept active through the years with different exercises. In her 30s, Ruediger was fitted with orthotics, which she says “totally changed my quality of life.”
“There is no neuromuscular disorder that cannot be improved with exercise,” says Laurence Kinsella, MD, FAAN, co-director for neurology at the SSM Neuroscience Institute in Fenton, MO. In the past, people with these conditions were discouraged from exercising because of the belief that it could further harm already weakened muscles, he says, “but data has clearly shown that exercise not only improves function but is safe as long as you don't overwhelm the musculoskeletal system.”
“Exercise can decrease the development of painful musculoskeletal syndromes, such as tendon and joint contractures that further limit activities,” says Alejandro Tobon, MD, FAAN, a neuromuscular disorder specialist at South Texas VA Medical Center in San Antonio.
For many of his patients, Dr. Kinsella says, “establishing an exercise regimen is life-changing. It improves mobility, reduces pain, and helps counter that natural sense of limitation that patients with neuromuscular disorders have. You realize how much you can still do.” Dr. Tobon incorporates exercise into every treatment plan, starting with a low-intensity routine for a small amount of time and gradually building more into it.
It is important to consider the concept of “sub-maximal” exercise, however, which involves stopping well before the point of exhaustion. This is particularly true of muscle disorders. To exercise safely, patients must overcome obstacles such as pain and balance issues, take precautions against overstressing their muscles, and understand their unique medical concerns. They should start with their neurologist, and if the condition affects the heart or lungs, they may need a physical activity program within a cardiac or pulmonary rehabilitation setting, says Dr. Kinsella. Consulting with a physiatrist, a doctor trained in rehabilitation medicine, can help, too. Sometimes, a session or two with a physical or occupational therapist with experience in neuromuscular disorders may be enough for patients to set up a program to do at home or the gym.
Ruediger learned the importance of pacing herself early. One day, she tried fins in the pool and was thrilled to feel her quads and glutes activate. But when she got out, she couldn't walk. “I sat down on the edge of the pool and wondered, ‘How am I going to get out of here?’” she recalls. After a few minutes, she reentered the water and started walking slowly. When she got out, she could walk again. “Now I understand what muscle failure is,” she says.
Muscle failure occurs when people exercise a muscle to the point that they can't move it anymore, explains Dr. Kinsella. He recommends that people with neuromuscular disorders take a slow, gradual, graded approach to building strength—with rest days built in. “You don't want to, say, work your legs to the point that they are no longer working,” he says.
Tailoring Programs
Each disorder has its unique challenges, which may change as the patient's condition progresses. Patients with the neurodegenerative disease amyotrophic lateral sclerosis (ALS) experience progressive muscular weakness, and eventually respiratory failure, typically within two to five years. Exercise hasn't been shown to improve ALS survival but can improve quality of life, says Nicholas Maragakis, MD, director of the Center for ALS Specialty Care at Johns Hopkins Medicine in Baltimore, who has studied exercise in patients with ALS.
For Jamie Dartez, 58, of Dallas, TX, a former personal trainer whose ALS symptoms emerged last July, his home workouts now include hand exercises; leg stretches; and core-strengthening workouts that help him turn over in bed by himself. Exercising helps him feel better, he says: “It kind of wakes you up.”
For patients with slowly progressive muscular dystrophies, a group of progressive genetic diseases that cause muscle weakness, “exercise is safe and likely beneficial,” says Kate Eichinger, PhD, DPT, although she believes more research is needed. A physical therapist in the department of neurology's division of neuromuscular disease at the University of Rochester Medical Center in New York, she creates an individualized plan for patients based on their goals, limits, and interests.
Amy Shinneman, 50, of Noblesville, IN, has Bethlem myopathy, a rare form of muscular dystrophy. She experiences muscle weakness and has had multiple surgeries, including to release tight Achilles tendons. She practices chair yoga and stretches, and she and her husband created a workout area in their home with light weights and a pool with an underwater treadmill. “Exercise helps with stiffness, pain, and muscle tightness. And it puts me in a better mindset, knowing I'm doing everything that I can,” says Shinneman, a writer and former patient ambassador for the Muscular Dystrophy Association.
Exercise opportunities can be affordable. Patients can do simple, safe exercises at home with little or no equipment. They also can see if they can receive a free gym membership through a Medicare Advantage program, such as Silver Sneakers, says Dr. Kinsella, who teaches classes at a YMCA that offers scholarships. But getting more physical activity can be as simple as taking a walk with a friend, she adds.
Staying Strong
These days, Ruediger, co-founder and chief mission officer of the CMT Research Foundation, does yoga, Pilates, barre, and cardio at the gym; walks at least two miles a day; and swims. “I tell myself, ‘If you're not getting stronger, you're getting weaker.’ That motivates me,” she says. She still has symptoms but believes the exercise program helps reduce her limitations.
“I feel strong—I am strong,” she says. “I know I'll lose my mobility, right? But maybe I'm going to lose it at 80 instead of 65.”
