Wheelchairs

February 9, 2001

Hi,

All this discussion on wheelchairs reminded of a high school girl who

had a horse at the barn where Nora used to ride. This girl was born with

no legs at all and one arm ended right below the elbow. Not only did

she ride (her family had had a saddle adapted with a kind of bucket

thing that held her), but she also did showmanship from her motorized

wheelchair with her horse. I was amazed that her wheelchair could move

around so well in those sandy arenas, but it did wonderfully. She was

an inspiration, I can tell you!

--

August 14, 2001

Sue: I had my day for moaning, you can have yours, too :-)

I, too, cannot propel myself in a manual chair, nor could I get it

out of the car, so I'm dependent on someone else for that, as I would

be with the scooter that comes apart - unless I got a lift installed.

Seems like my walking trips are getting shorter due to hip

discomfort - I don't like that.

Take care,

Melody

> Dear Gretchen and others

> I'm sorry if my post upset anyone it was not intended to do so. I

agree whole heartedly with you when you say about using a chair to

eleviate pain etc - that is so important to both physical and mental

well being.

> Last year I was at a meeting of CMTUK and there were over 150

CMTers there and only 8 in chairs. I think what I want to say really

is for new people because you have CMT you don't have to assume that

you will end up in a chair.

> I was just having a bad day - I'm sorry but because of

circumstances I only have a self-propelled chair which I can't use on

my own because my arms are too weak which means that the only time I

can go out is if someone takes me and that means days at a time stuck

in the house. Sometimes I could scream.

> Sorry about the moan.

> Love to you all

> Sue

> The important thing is never to stop questioning.

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

> Freelance Writer and CMTer

>

August 14, 2001

Melody

Please tell me when you were diagnosed and how severe you were as a child

because I understand hip problems and lower back problems like I have are due to

secondary CMT in other words due to neglect of symptoms when younger.

I'm sorry that things are getting bad for you I know how you feel the same as

you know how I feel - in a sad sort of way I find that reassuring because I know

I'm not the only one - does that make sense?

Anyway a great big hug

Love

Sue

The important thing is never to stop questioning.

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

Freelance Writer and CMTer

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

From: mel2mars@...

Sent: Tuesday, August 14, 2001 10:36 PM

Subject: [] Re: Wheelchairs

Sue: I had my day for moaning, you can have yours, too :-)

I, too, cannot propel myself in a manual chair, nor could I get it

out of the car, so I'm dependent on someone else for that, as I would

be with the scooter that comes apart - unless I got a lift installed.

Seems like my walking trips are getting shorter due to hip

discomfort - I don't like that.

Take care,

Melody

> Dear Gretchen and others

> I'm sorry if my post upset anyone it was not intended to do so. I

agree whole heartedly with you when you say about using a chair to

eleviate pain etc - that is so important to both physical and mental

well being.

> Last year I was at a meeting of CMTUK and there were over 150

CMTers there and only 8 in chairs. I think what I want to say really

is for new people because you have CMT you don't have to assume that

you will end up in a chair.

> I was just having a bad day - I'm sorry but because of

circumstances I only have a self-propelled chair which I can't use on

my own because my arms are too weak which means that the only time I

can go out is if someone takes me and that means days at a time stuck

in the house. Sometimes I could scream.

> Sorry about the moan.

> Love to you all

> Sue

> The important thing is never to stop questioning.

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

> Freelance Writer and CMTer

>

August 15, 2001

Sue:

I was diagnosed by age 7; that would have been in 1962. I was

treated with orthopedic shoes until age 13. I did not consider

myself severe, but I did have balance problems which caused anxiety.

I stopped running after a triple arthrodesis on my flat foot at age

13 - I never regained the up-and-down flex I had before the surgery.

I did not have to wear ortho shoes after that. Thru high school and

until age 28 I was still climbing stairs with the help of banisters.

Had a baby at age 33 (and another ankle surgery), shortly after got

my AFO's and crutches and prescribed PT exercises (including lower

back). It was then I learned my hip was lower on one side from the

other. Makes sense, one foot was flat, the other had a high arch.

I was doing great for a long time, up until about 2 years ago.

I attribute my back problems to years of having an irregular gait

and falling on my hind end once in a while.

The hip that is numb/hurting is the flat foot side where I have had

severe rotation for years. I knew this leg would be the one to cause

me problems at some point.

If you want to know more, please reply. I've got to go make dinner :-)

Melody

> > Dear Gretchen and others

> > I'm sorry if my post upset anyone it was not intended to do so.

I

> agree whole heartedly with you when you say about using a chair

to

> eleviate pain etc - that is so important to both physical and

mental

> well being.

> > Last year I was at a meeting of CMTUK and there were over 150

> CMTers there and only 8 in chairs. I think what I want to say

really

> is for new people because you have CMT you don't have to assume

that

> you will end up in a chair.

> > I was just having a bad day - I'm sorry but because of

> circumstances I only have a self-propelled chair which I can't

use on

> my own because my arms are too weak which means that the only

time I

> can go out is if someone takes me and that means days at a time

stuck

> in the house. Sometimes I could scream.

> > Sorry about the moan.

> > Love to you all

> > Sue

> > The important thing is never to stop questioning.

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

> > Freelance Writer and CMTer

> >

August 18, 2001

Hi everyone,

I have just moved to an accesible apartment & finally bought a powered

chair...it has dramatically improved my life. I am one of those severely

affected with CMT...no one else has CMT in my family either. I had to reply

to those who feel that using a chair is the worst scenario...to me it is my

ticket to much freedom & independence. I have weakness in both arms, so

using a manual chair was impossible to manage myself when going out. Now I

go food shopping alone, and yesterday I spent the entire day in the mall

using the powered chair...it was fantastic! I always had to depend on

someone else...now I depend on myself, and it is the most wonderful feeling

in the world. It took awhile to get here, but I can honestly say that life

is great! Even though my CMT is progressing, it's teaching me to live day by

day with acceptance of things I cannot change, and to never take life for

granted. I have never been this happy...how ironic being that physically I

am at my worst. I am not ignoring the fact that it is very scary to think of

life in a chair...I used to be in that predicament too. All I am trying to

say is that life can be amazing, even in a powered chair!

Kathy in Brooklyn

August 18, 2001

Thanks Becky! I'm ready to do many things now with this Jazzy...LOL!!!

Kathy

August 18, 2001

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

From: UniqueCMT@... <UniqueCMT@...>

< >

Cc: UniqueCMT@... <UniqueCMT@...>

Date: Friday, August 17, 2001 11:31 PM

Subject: Re: [] Wheelchairs

>>>Kathy, I'm so happy you have your independence back! :) And that your

doing well. Ready to rock and roll in that chair at the

vacation/meeting/cruise or what ever it ends up being? LOL, ~>Becky M.