Thursday, 27 December 2012


I had delivered just this morning a book I purchased on Charcot-Marie Tooth Disease put together by CMT International UK.

I have had a quick flick through it and it contains more unusually strange things that are related to what I have experienced and not previously thought linked to my physical pains! Like headaches for one and these have affected me on and off for years.

It has also come to my realisation that all the physiotherapists I was FORCED to go to by the NHS despite my arguing and compaining about it have been making me do stretches and exercises that have made the conditions WORSE for I have been stretching in the OPPOSITE direction to that I am supposed to!

I should have realised this when Biomechanics guy, Mark, I saw at Gator Drive in Enfield told me to bend my toes DOWNWARDS and into a curled position as them pointing UPWARDS is stretching my Plantar fascia further and is WHY the cause me pain?!

So all those dozens weeks pulling my toes further UPWARDS in DAILY stretches was actually hindering me and causing further strain and therefore pain then?!


Anyway enough swearing at overpaid morons here are a few notes I pulled out of the practical guide.

Now if anyone in my family or anyone else that has known me a long time with these pains and discomforts might find some of the following peculiarly familiar, LMAO!

A Practical Guide
Compiled by CMT International UK

Jean-Martin Charcot, Pierre Marie & Howard Henry Tooth

CMT casues deterioration of the Periphery Nerves that control sensory information of the hands, forearms, lower legs and feet. Feet and lower legs are always affected first. (Page 5)

Poor circulation in hands and feet are factors as is numbness causing self-injury without realising it. Hand tremors are also possible albeit rare as well as loss of reflex. Deafness and breathing difficulties are also factors along with others. (Page 15)

“Any chronic disabling condition can affect the way people feel and think about themselves. People with CMT often suffer from low self-esteem, and relationships at work and within the family can be affected.” 
(Page 49)

“As a person learns to live with CMT the possibility of losing the ability to play tennis, use a computer, do up zips and buttons or turn the pages of a newspaper, can affect the perception of self over and over again.” (Page 49)

COPING: Sense of Humour, Keep a Journal, Exercise, Take Long Walks, Take One Day at a Time, Replace Negative Thoughts with Positive Ones. (Page 51)


Care of the Feet, Breathing Problems and Dealing with Stress sections (Pages 54 & 55)

Do NOT be over ambitious on days when you feel good or you may feel fatigued for several days afterwards. Alternate between light and heavy chores throughout the week. Do not do anything heavy if you are planning an evening activity. (Page 56)

SIT whenever possible even while dressing, after showering to conserve energy. (Page 56)

Rearrange home to reduce tripping. (page 56)

Pain can be sharp, sudden, short-lived, gnawing as well as long lasting and chronic. (Page 58)

Most pain comes not from CMT but from something that has atrophied. (Page 58)

It is much more difficult to relieve pain after it has become established. (Page 58)

As a final resort CMT pain can be relieved by surgery through a nerve block. (Page 59)

Foot impairment and its influence on walking section. (Page 60)

Problems relating to hand function section. (Page 62)

Surgical procedures to correct problems with feet section. (Page 64)

EDIT: So previously I have only been given names of the symptoms, or even NOT and lied to, while not being given the name of the CAUSE!!

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