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Supporting people affected by Charcot-Marie-Tooth disease.

Exercise

Exercise plays a very important part in managing CMT and helping to prevent or ease the complications of the condition. In fact, exercise is more important for people with CMT than for those without the condition.

This is because:

  • exercise, combined with a healthy diet, is the main way of controlling body weight. Being overweight or obese puts extra pressure on already weakened muscles and joints
  • it is a great way of tackling fatigue – by exercising regularly you will find you are able to carry on your day-to-day tasks without getting so tired
  • muscles are prone to becoming weak without use, making it harder to get around. Exercise keeps muscles strong
  • exercise helps with balance and posture
Which type for me?

There is no fixed rule about which exercises or activities best suit people with CMT. Do not let your worries about your CMT restrict you from trying different things. Just bear in mind the following points:

  • if you are doing something that causes you any pain, stop immediately
  • get to know your own limitations and understand the difference between getting naturally tired from exercise (a good thing) and excessive fatigue (a bad thing)
  • talk to your physiotherapist or gym instructor about what would suit you
  • if one form of exercise is not right for you, try another (e.g. if walking doesn’t work, try cycling)

Exercise does not have to mean going to the gym. The important thing is to make physical activity part of your normal routine. Getting off the bus one stop early, climbing the stairs instead of taking the lift or standing on the escalator, cycling to the station, walking to the shops or school are all good ways of reaching the 30-minute recommended daily minimum.

What kind of exercise?

‘Aerobic’ exercise is good because it works your heart and lungs. Walking, swimming and cycling for example all help to increase endurance, reduce fatigue, improve mood and improve your ability to do day-to-day activities.

Exercise that strengthens your posture muscles is important to help with your sense of balance – for example, yoga, Pilates and Tai Chi. These forms of exercise will also train your balance responses so you are less likely to fall.

Stretching

Daily stretches are vital for people with CMT to keep hands, feet and ankles flexible. They help prevent your muscles tightening and shortening, which can lead to loss of movement, and pain and deformity in your joints – particularly in the hands, feet and ankles.

Hands

In the hands, the small muscles in the palm weaken first. Over time the bigger muscles in the forearm take over hand movements, allowing you to continue with day-to-day tasks. The result is that the large forearm muscles overpower the smaller hand muscles, setting up an imbalance. Eventually, this imbalance can be observed in the resulting flat palm, flattened knuckles and bent fingers.

The large number of joints in the human hand enables it to make complex movements. But if some of those joints become stiff, you are likely to find that you lose the ability to do everyday manipulation tasks. In CMT, weakness of the hands makes doing everyday tasks more difficult. This becomes doubly difficult if the joints stiffen up as well. Daily stretching will ensure that the joints remain supple and will slow down the development of hand deformities. It is important that you get into the habit of doing these stretches before deformity and stiffness develop.

Ankles

In the lower leg, the muscles on the shin (front of your lower legs) pull the foot and toes up, whereas the calf muscles (back of your lower legs) point the toes. The calf muscles attach onto the heel bone via the Achilles tendon at the very back of your ankle.

In CMT, the muscles on the shin tend to get weaker first which results in a ‘drop foot’. The stronger calf muscles overpower the weaker shin muscles setting up an imbalance between the two. Because of this, the calf muscle will gradually get shorter and stiffer, as will the Achilles tendon, further increasing the foot drop. Because the ankle needs to be at a right angle for the toes to clear the floor when walking, the result is an increased chance of tripping when walking, increased difficulty getting the heel to the floor and a greater chance of sprained ankles.

Stretching the calf daily is something that everybody with CMT should get into the habit of doing to keep the calf muscles lengthened and slow down the development of the deformity. These stretches are easy to perform and can be incorporated into your daily routine, for example when brushing your teeth at the bathroom sink or standing at a work surface while waiting for the kettle to boil. Sinks and work surfaces are an ideal height for support.

Orthoses and stretching

Orthoses can play an important role in helping to maintain flexibility and joint range and in preventing the muscles tightening and shortening. This can be by means of insoles which may be thicker on one side so the foot is stretched when weight is put on it. If stretching is particularly difficult, night splints are sometimes used to stretch the calf by pulling the toes up and strapping the heel down and at the same time holding the ankle straight. Similar orthoses used through the day can provide a very effective stretch as well as holding the foot in the best position for walking.

 

Physiotherapy

Physiotherapists are specialists in how the human body functions and moves. They are specially trained to understand how the joints, muscles, tendons and ligaments of the body work together and to spot any problems.

If you have not had a session with a physiotherapist, you should ask your doctor to refer you.

Although physiotherapists (often called physios) cannot stop the progression of CMT, they can often spot a potential problem early enough so that it can be treated and, possibly, prevented – for example, any stress you may be putting on other joints like your knees or hips. This can help prevent secondary weakness causing other problems.

They will also help you devise ways to manage your condition yourself on a day-to-day basis, for example: a suitable exercise programme; aids and strategies to keep you moving well; knowing when to seek help.

You should be able to get a referral to a physiotherapist from your GP or consultant neurologist. If you would like to see a physiotherapist privately, contact the Chartered Society of Physiotherapy for the name of a physiotherapist near you. Ask to see a neurological physiotherapist or a neuromuscular specialist physiotherapist.

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