Apart from helping to make you feel good, exercise combined with proper stretching has the benefit of helping you to keep your muscle strength, flexibility, stamina and balance.  In addition, physical activity is a good way to help stop becoming overweight or, if you’re already a bit on the heavy side, to lose it sensibly (see General Health Tips).

So what type of exercise is good for people with CMT?  Frustratingly, there is no definitive answer.  As with so many issues, because CMT affects people differently it is impossible to give a simple “one size fits all” answer.  Some people with CMT may be advised to do little or no exercise, whereas others have been part of the Team GB Para-Olympic squad.

The key thing is to start with a positive attitude.  Just because you have CMT doesn’t automatically rule out any activity, however strenuous.  The best general advice seems to boil down to three points:

• Make an appointment, through your GP, with a physiotherapist that specialises in helping people with neurological conditions such as CMT; known as a neuro-physiotherapist.  He or she will be able to work with you to tailor a menu of exercises or activities that not only match your physical capabilities, but also fits in with your life and personal prioritie
• Listen to your body.  Ultimately, you are the final judge about whether any activity – exercise or otherwise – is right for you.  Take it at your own pace and, if it hurts, doesn’t feel right or is exhausting you – stop.  At the very least, stop and talk it over with your physiotherapist.
• Make sure the instructor or trainer is fully aware that you have CMT and really understands what that means (if necessary get her or him to read some literature from CMT United Kingdom).

Starting gently

If you’re looking to start gently, then often the best place to start is in water.  The water in the pool has two advantages.

• Has buoyancy and so takes the strain off your joints so reducing impact.
• Adds resistance to any exercises you do, so helping you keep fit.  Apart from straightforward swimming (bear in mind that breaststroke can put a lot of pressure on your back and hips) most leisure centres offer a number of water based exercises, just find a class at your level.  And remember to tell the instructor about your CMT.

Hydrotherapy is simply a form of water-based exercise which is usually carried out by a physiotherapist.  It is carefully managed and is usually in a specially built pool with a warmer temperature, often within a hospital.  Unfortunately, getting access to hydrotherapy is often nigh on impossible unless you are very disabled.  What’s more pool based exercises – mentioned above – are probably just as effective for most people.

If you’re looking for something a bit more challenging, but well managed, you could try gym based exercises.  The benefits of working out in a gym are that you can control the weights and speeds to suit you.  Also, resistance equipment can offer some structured support if used correctly.  Again, talk to your neuro-physiotherapist, before starting a new exercise regime and make sure the gym understands about your CMT.

Often asked questions and answers regarding exercise

1.         Is it physiologically possible for me (with CMT) to build up muscle mass in my upper arms?

Providing that severe weakness is not present in these muscle then studies have shown that improvements in strength can be made with low to moderate weight training. We would advise guidance of a gym instructor or physiotherapist to start you off to help direct what level this is and where to start. This will vary from person to person. Advice from a professional will ensure that exercises are performed in an optimal, safe position for the muscles to work effectively. This is particularly important for people who have reduced sensation of their limb position.

It is important not to confuse strengthening with “bulking up”. When a person starts a training program, any increase in strength is due to an increase in the number of muscle fibres a person uses to do the specific exercise. The muscle fibres will only increase in size after 12 weeks. It’s important to bear in mind that a person can not expect to build up “Popeye” arms if their natural build is of a “Olive Oyl”. Your natural build will determine the extent you can bulk up.

2. Will weight training cause my CMT to increase in severity?

Research into exercise in neuromuscular conditions has shown that there is no increase in weakness with low to moderate intensity weight training.   The benefits of exercise far out way any risks of “over work weakness”. Any risks should be minimized with sensible precautions:

• Exercise at a low to moderate level as advised by your gym instructor/physiotherapist
• Do not exercise to exhaustion
• If you experience excessive muscle soreness longer than 48 hours then you have probably worked too hard

3. Will any muscle I do build up rapidly waste away due to my CMT?

Muscle wasting associated with CMT is slow to progress and will tend to be at the extremities (hands and lower leg). If you were to build up your upper arm strength through weight training, we would not expect you to lose this effect due to the disease process if you have the more common types of CMT. A muscle will lose strength if you stopped exercising it. This is called “disuse atrophy”. In other words, if you don’t use it, you lose it.

4. Should I not exercise certain parts of my body?

There are no parts of the body to avoid though it would appear from research studies that there is little benefit to strengthening severely weakened muscles. However, we would recommend general exercise as well as (or instead of) weight training, particularly exercise that strengthens muscles important for good posture and balance. Exercises such as yoga, Pilates, Tai Chi would all be beneficial. Studies have shown that aerobic type exercises, such as walking, swimming and cycling help to increase endurance, reduce fatigue, improve mood and increase the ability to do day- to-day activities. Exercise doesn’t mean having to go to a gym. You can achieve aerobic benefits from daily routine changes such as walking a bit further or climbing the stairs instead of taking the lift. We would recommend that if you are used to doing certain sports then continue with them as long as you are able. You may find that your balance or ability to run is compromised over time.

Another important area of exercise to consider is muscle stretching. General stretching after exercise is important to prevent injury and muscle soreness. However, particularly in CMT, daily stretches are important to maintain muscle length and slow down the development of deformities in the hands and feet. It is vital you stretch in the correct position and hold the stretch correctly. We recommend that you follow a stretching programme prescribed by a physiotherapist.

Happy exercising!

Liz Dewar is a senior physiotherapist at the National Hospital for Neurology and Neurosurgery. She has worked with many people with CMT in the physiotherapy and orthotics clinic setting. Gita Ramdharry is a research physiotherapist at the Institute of Neurology.

Last Updated ( Saturday, 17 December 2005 )