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Power of balance
Monday April 9, 2012

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Susan Ruediger could ignore the fact that she was different from her peers at school — except when the dreaded President’s Challenge physical fitness test rolled around. Ruediger felt the grip of shame when she would trip and fall during the one-mile run or struggle to pull herself up for the bent-arm hang.

Ruediger suffers from something called Charcot-Marie-Tooth disease. It is the most commonly inherited peripheral neuropathy, and according to the National Institute of Neurological Disorders and Stroke, it affects roughly one in 2,500 people in the U.S. Although the severity of this progressive disease can vary, people with CMT typically lose muscle tissue and sensation in their feet, ankles and lower legs and sometimes in the hands, wrists and lower arms.


Katy Eichinger, PT
Ruediger sought out a neurologist, and was devastated when the physician told her there was no treatment available. Ruediger, now the director of development at the national Charcot-Marie-Tooth Association in Pennsylvania, discovered this was not true.

"It is not accurate to tell this patient population that there is nothing we can do for you," she said. "Currently there is no pharmaceutical treatment for CMT, but physical and occupational therapy can make a dramatic difference when it comes to managing the symptoms."

Increasing awareness

Through her experience in the healthcare community, Ruediger learned many rehabilitation clinicians knew little about CMT. In an effort to change this, the CMTA entered a partnership with Physiotherapy Associates in Pennsylvania, a large national outpatient rehabilitation provider. Together, the two organizations created Web-based educational modules for therapists who want to learn about the disease and effective treatment methods. The first training module is a 35-minute introduction, and, within the next several months, a half-dozen other modules will be available, she said. The CMTA plans to make the modules available through their website to anyone interested in learning more about the disease.

Although some patients may arrive at clinics with a CMT diagnosis, PTs also may play a critical role in identifying undiagnosed patients, said Polly Swingle, PT, president and CEO of The Recovery Project LLC, an outpatient physical therapy clinic in Michigan.


Polly Swingle, PT
"Sometimes mothers will bring in children who are walking on their toes or not meeting the milestones for crawling, walking, running or jumping. Or they struggle with fine motor skills, such as coloring or writing," Swingle said. "This can sometimes be a sign that a child has CMT. For adults, the symptoms are usually weakness in the ankles, falling and tripping frequently, or pain in the feet."

If Swingle suspects CMT, she will refer a patient to a neurologist for further testing. There are many genetic variations of the disease, and the symptoms can vary depending on the type.

For patients who are struggling with foot pain and tripping, foot or ankle-foot orthoses can be effective interventions, said Katy Eichinger, PT, DPT, NCS, a physical therapist in the neuromuscular disease unit at University of Rochester (N.Y.).

"Patients who have balance problems and weakness in their ankles have to think about every step they take to avoid falling, and this may result in fatigue," Eichinger said. "I remember working with a teacher with CMT who was exhausted and in pain after being on her feet all day, but once she started wearing orthoses, her pain significantly decreased. This made it easier for her to play with her own children after work."

Importance of exercise

It also is essential for PTs to start CMT patients on an exercise program that will increase cardiovascular endurance and muscle strength, Swingle said. While in the past exercise was discouraged for these patients because of fear of increasing the muscle damage, studies now show exercise is beneficial for patients with CMT. An article published in 2008 in Muscle & Nerve reported CMT patients in a study who participated in 24 weeks of cycling interval training exercise experienced decreased fatigue and pain, and increased functional ability during the training.

"An exercise program is important so these patients can gain the endurance and strength they need to improve their function of walking," Swingle said. "If they become inactive and more sedentary, they not only will lose function but also will increase their risks of other health problems, such as diabetes or heart attack."

With CMT patients, however, it is important to avoid high-impact exercise, such as running, because muscle weakness can cause joint problems. Low-impact exercise, such as biking, swimming or using elliptical trainers, is more effective, Swingle said.

CMT patients often benefit from exercises that increase flexibility in their heel cord and hamstrings because these muscles may be shortened as a result of the disease, she said.

On the right track

Although leaders at the CMTA are hopeful researchers soon will develop pharmaceutical treatments for the disease, PTs such as Swingle are witnesses to the fact that the right rehabilitation can keep patients far more functional than thought possible in the past.

Swingle remembers a 68-year-old man with CMT who came to her because he was tripping and falling at home. He admitted he was becoming increasingly sedentary and depressed. He wished he could watch his grandchildren participate in soccer games on the weekends, but he was afraid he would trip during the walk from the car to the field, so he stayed home. The man came to Swingle twice a week for a month, and he started performing strengthening exercises for his legs and core. She also helped him learn how to stretch his heel cord and hamstrings, and they worked together on activities to improve his balance. After just one month, he was thrilled to report he had successfully made it to a soccer game without any falls on the way.

"The biggest thing we are doing for these patients now is that we are treating them," Swingle said. "We can slow down the progression of the disease with orthoses, stretching and cardiovascular exercise, and I love seeing them improve. With this type of genetic disease, you can really end up treating many members of a family, and it is exciting to give them hope again." •

Heather Stringer is a freelance writer.


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Monday April 9, 2012
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