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Charcot-Marie-Tooth Disease
Claire Quinn
(First published in STATNews, September 2008)
 

I am a sufferer from Charcot-Marie-Tooth disease1 (CMT), also known as Hereditary Motor and Sensory Neuropathy. I also suffer from inflammation of the peripheral nervous system and associated respiratory problems. CMT causes muscle wasting, drop foot and pain, resulting in weakness of the limbs and loss of balance.

 

Four years ago I had a course of 30 weekly Alexander lessons with Anna Cooper. This was a turning point in learning to manage my condition and I have had regular refreshers ever since. The Technique has given me independence from most of the aids offered to CMT sufferers, such as orthotics or the very uncomfortable leg splints I tried in the past, and it has helped me manage my condition very successfully. Practising the Alexander Technique helps me understand how best to use my body and has helped with standing, walking and keeping mobile.

 

After starting lessons I realised that I rarely had enough weight on my heels and tended to lean forwards. I was surprised to find that a tiny adjustment such as releasing my neck makes a big difference to my ability to walk and stay upright. I often stop during a walk to adjust my body, and can then continue more safely and comfortably.

 

I am prone to falls, but learning to free my neck as I start to fall has been a great help. I used to fall several times a week, but since getting to grips with release and direction my falls have reduced to perhaps once a month. People are sometimes quite astounded at how I manage to recover my balance. When you apply what sounds like such a simple adjustment successfully for the first time and feel the difference, itís as though a lightís been switched on.

 

There are other benefits I have noticed from using the Technique. Physical exertion can make me weak and I used to sit down to recover. When possible I now do a semi-supine instead. This helps me to recover more quickly, and I can get on with the day -not just physically but also mentally.

 

Following a semi-supine I feel more relaxed and less tense in every way. Respiratory problems (i.e. muscle weakness and diaphragmatic paralysis) make me breathless, but I find my breathing evens out after lying down, and I recover more rapidly.

 

During the past two years my respiratory muscles have stopped deteriorating and continue to remain stable. My consultant was preparing to give me oxygen at night but is surprised by the fact that I have not needed it yet.

 

I now employ the Technique on a daily (if not hourly) basis, building it into my everyday life, and have resisted the use of walking aids for several years because of this skill. Anna has taught me a number of strategies to manage my mobility, breathing, pain and sleep.

 

My consultants have been pleased and surprised with my general strength and ability to cope and have stopped pressuring me to choose orthotics over the Technique. However, despite evidence of the positive effects the Technique has had on my wellbeing, I still find the medical profession reluctant to embrace it. I believe this to be more about the pressures of working within the NHS framework than about a distrust of the Alexander Technique itself.

 

The Technique has been life-changing for me. I cannot imagine a life without it.

 

1. The disease is named after the three physicians who discovered it.

 

© Claire Quinn 2008
 

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