Explaining myself

[Guest guest]

I'm forty and fourteen months and have been in a wheelchair since 1999. When I

first went into a chair I had no idea what was wrong with me and why I couldn't

walk and the doctors I saw didn't know either.

I'd had NCV'EMGs in 98 and a doctor who wasn't even a consultant ruled out any

form of CMT.

Then in 2000 I found www.cmtint.org and downloaded pictures of feet and legs

exactly the same as mine. But my symptoms didn't just develop over a period of

time they were there at birth and when I learned to walk I walked with drop

feet.

The rest of you know the hassle I've had since then and if you don't all my info

including my personal medical records are available on my website.

Okay I know my story is probably extreme but it really happened and it happened

to me. I wasn't given the chance of help, I wasn't given the offer the offer of

AFO's to correct my footdrop I was left to get on with things and as a result

I'm now severely disabled.

And yes when I see what is available and what was available when I was growing

up it does make me angry (a fault of human nature and definitely a fault of

mine) that I wasn't given a chance.

But that's in the past and I can't change that but what I hope I can help change

is the future. To those of you who need to wear AFO's do so but detract from the

machinery with a bigger smile and a warm held out hand - that will distract

people I do that and I'm in a wheelchair but doing so I see that people treat me

as a normal human being that uses wheels instead of legs.

But the other side of the severity of my condition is the pain. AFO's are

designed to correct the failings in your own body and also to take the strain

off the bits that do work that would, without help work even harder a job they

weren't designed to do. Carry on pushing these muscles (by not wearing

perscribed AFO's) and I promise you that later on you will pay for it whether it

be you end up like me in a wheelchair virtually unable to move your lower part

of your body and in constant pain or you can still move the lower part of your

body but because of the excess strain put on other muscles it is so painful.

This is not a negative attitude this is being real and someone telling you the

truth.

As I said in an earlier email there is no chance of a cure for us with CMT

because it was already established in our genetic makeup before we we're born.

Paolo and many other doctors are searching for a way to halt the degenerative

process but as yet they haven't found it.

But at least we do have help available unlike those in third world countries

etc. For those who haven't read this story of another world please read this

site http://washingtonpost.com/wp-dyn/health/A17749-2001Feb16.html (it's in

bookmarks) and appreciate that there but for the grace of God go I.

Yes I'm angry at what happened to me but I know I can't change that but I have

two sons who show mild symptoms of CMT and I damned if they should suffer

unnecessarily - but also if with more CMT awareness we can prevent even one

person in the world suffering needlessly then we've done what we set out to do.

I hope for those who see me as agressive etc can now understand why I feel so

passionately about why I want CMT recognised by every doctor and treatment

available as soon as possible and also for people to be aware of CMT. I have a

friend who has MS and when she says that she has all the understanding and help

she need. I say Charcot-Marie-Tooth Disease and I'm immediately pointed in the

direction of the local dental surgery.

CMT is no laughing matter - for many it is very serious and for others it can

kill.

You know where to find me either on the website of at

sue@... if you have any problems with what I've said.

I'm always here.

Love to you all

Sue X

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

[Guest guest]

It is reassuring after reading your E Mails, and reading your web page that

I am not on my own.

I have a 5 year old child, who has been treated for bilateral talipes since

birth, he was operated on a 10 months old to bring his feet down and in, he

now wears plastic splints, falls constantly, has curled toes on both feet,

and I am unable to get a diagnosis for him.

He has tested negative for CMT type 1, Genetics say they consider he has CMT

but type unknown, Neurologists say they dont know, and othopaedics will not

comment. Where do you go next???

-----Original Message-----

From: Sue Horder-Mason [mailto:sue@...]

Sent: 16 January 2002 01:24

Subject: [] Explaining myself

I'm forty and fourteen months and have been in a wheelchair since 1999. When

I first went into a chair I had no idea what was wrong with me and why I

couldn't walk and the doctors I saw didn't know either.

I'd had NCV'EMGs in 98 and a doctor who wasn't even a consultant ruled out

any form of CMT.

Then in 2000 I found www.cmtint.org and downloaded pictures of feet and legs

exactly the same as mine. But my symptoms didn't just develop over a period

of time they were there at birth and when I learned to walk I walked with

drop feet.

The rest of you know the hassle I've had since then and if you don't all my

info including my personal medical records are available on my website.

Okay I know my story is probably extreme but it really happened and it

happened to me. I wasn't given the chance of help, I wasn't given the offer

the offer of AFO's to correct my footdrop I was left to get on with things

and as a result I'm now severely disabled.

And yes when I see what is available and what was available when I was

growing up it does make me angry (a fault of human nature and definitely a

fault of mine) that I wasn't given a chance.

But that's in the past and I can't change that but what I hope I can help

change is the future. To those of you who need to wear AFO's do so but

detract from the machinery with a bigger smile and a warm held out hand -

that will distract people I do that and I'm in a wheelchair but doing so I

see that people treat me as a normal human being that uses wheels instead of

legs.

But the other side of the severity of my condition is the pain. AFO's are

designed to correct the failings in your own body and also to take the

strain off the bits that do work that would, without help work even harder a

job they weren't designed to do. Carry on pushing these muscles (by not

wearing perscribed AFO's) and I promise you that later on you will pay for

it whether it be you end up like me in a wheelchair virtually unable to move

your lower part of your body and in constant pain or you can still move the

lower part of your body but because of the excess strain put on other

muscles it is so painful.

This is not a negative attitude this is being real and someone telling you

the truth.

As I said in an earlier email there is no chance of a cure for us with CMT

because it was already established in our genetic makeup before we we're

born. Paolo and many other doctors are searching for a way to halt the

degenerative process but as yet they haven't found it.

But at least we do have help available unlike those in third world countries

etc. For those who haven't read this story of another world please read this

site http://washingtonpost.com/wp-dyn/health/A17749-2001Feb16.html (it's in

bookmarks) and appreciate that there but for the grace of God go I.

Yes I'm angry at what happened to me but I know I can't change that but I

have two sons who show mild symptoms of CMT and I damned if they should

suffer unnecessarily - but also if with more CMT awareness we can prevent

even one person in the world suffering needlessly then we've done what we

set out to do.

I hope for those who see me as agressive etc can now understand why I feel

so passionately about why I want CMT recognised by every doctor and

treatment available as soon as possible and also for people to be aware of

CMT. I have a friend who has MS and when she says that she has all the

understanding and help she need. I say Charcot-Marie-Tooth Disease and I'm

immediately pointed in the direction of the local dental surgery.

CMT is no laughing matter - for many it is very serious and for others it

can kill.

You know where to find me either on the website of at

sue@... if you have any problems with what I've

said. I'm always here.

Love to you all

Sue X

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my

work, and my God. " - Helen Keller