Medical Edge: Stabilizing life with Charcot-Marie-Tooth

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Medical Edge: Stabilizing life with Charcot-Marie-Tooth

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DEAR MAYO CLINIC: My husband was diagnosed with Charcot-Marie-Tooth

disease about three years ago. He's 71 and cannot stand without

holding onto something. He is having more and more difficulty

walking. Is there anything that might help him since there is no cure?

Charcot-Marie-Tooth disease actually refers to a group of common,

inherited neurological disorders that result in similar symptoms.

Named for the three physicians who described the condition in 1886,

Charcot-Marie-Tooth (CMT) is also referred to as hereditary motor and

sensory neuropathy (HMSN). This group of diseases damages the

peripheral nerves, located outside the brain and spinal cord,

weakening muscles, reducing muscle size and, in some cases, causing a

loss of sensation. The nerve damage (neuropathy) that CMT causes

currently can't be repaired, but there are ways to manage the signs

and symptoms, as well as prevent injury.

As in your husband's situation, CMT often affects a person's lower

legs, ankles and feet. Stabilizing his ankles may help with lack of

strength and difficulty walking. Footwear that provides ankle

support, such as lightweight lace-up boots, may be enough. If not, a

prescription orthopedic ankle brace also can help. But, for some

people, braces are problematic because while they aid in stability,

they reduce flexibility. So, walking up stairs or on uneven surfaces,

for example, may be even more difficult.

In addition to stabilizing his ankles with external support, your

husband may benefit from keeping the other muscles of his legs and

ankles strong. Although muscles that have already been affected by

nerve damage don't recover, strengthening the surrounding muscles can

increase stability. Maintaining a healthy body weight is also

important, as extra weight can further tax weak muscles and the

joints they support.

Your husband should talk with his physician about beginning a program

of low-impact exercises to strengthen the other muscles and increase

their flexibility without hurting compromised joints. Physical

medicine and rehabilitation specialists may be helpful in outlining

specific recommendations.

For some people with CMT, a loss of sensation makes balance and

walking difficult because they can't feel their feet. Being alert to

visual cues can make walking easier. To help, make sure the lighting

in your home is adequate, use night-lights to reduce the risk of

stumbling and tripping, and remove items, such as throw rugs, that

can create a fall hazard.

Loss of sensation also can increase the risk of painless foot

injuries. If your husband has lost some of the feeling in his feet or

ankles, it's important for him to inspect his feet daily. To avoid

serious complications, he should see his doctor right away if he

notices open sores, breaks in the skin, unexplained swelling or any

other foot or ankle damage.

Generally, CMT progresses slowly over many years. If your husband's

situation is deteriorating rapidly, he should see his doctor for an

evaluation to rule out another underlying medical condition. People

with CMT may be at greater risk for other forms of nerve damage from

conditions such as diabetes and thyroid disease. Preventive care is

key to avoiding additional nerve damage. For my CMT patients,

depending on their age and health, I recommend a yearly physical

evaluation that includes blood tests for diabetes and thyroid

disease. Because good vision is critical for people with CMT to

navigate their surroundings and maintain mobility, an annual eye exam

is also a must in older patients.

The good news is that, with proper therapy and preventive care, most

people with CMT don't lose their ability to walk and most are able to

lead active lives. -- Klein, M.D., Neurology, Mayo

Clinic, Rochester.