Progression

[Guest guest]

In a message dated 10/28/2000 8:43:50 PM Eastern Standard Time,

edwinrmore@... writes:

<< One thing to remember is that CMT is not only progressive but also

cumulative. Ie progressive generally means more area coverage and cumulative

means existing areas get worse >>

That makes so much sense to me and describes what I feel is happening to me.

I hurt places that I never hurt before, all in the last 9 months.

[Guest guest]

In a message dated 10/28/2000 8:50:39 PM Eastern Standard Time,

itch1@... writes:

<< I am interested in hearing if CMT'ers who was diagnosed in early

childhood, have had progression of the illness worse at a certain

age >>

Even though I've had CMT since around age 5, I wasn't diagnosed because my

parents would not take me to a doctor. I was diagnosed as an adult, and yes,

it is getting worse for me. I will be 47 in January, 10 yrs ago had to wear

AFO until the doctor done a triple on the right foot. I'm now having severe

nerve and muscle pain, my hands have begun to hurt and go numb. It's getting

harder for me to hold a glass because of stretching the thumb around the

glass, severe pain there.

[Guest guest]

In a message dated 10/28/2000 7:43:44 PM Central Standard Time,

edwinrmore@... writes:

> Physiatrist never counseled to tough it out and last as long as possible. He

> felt you lost more that way as opposed to helping the capability left to

> extend its usefulness as long as possible -- food for thought I think. EdM

>

>

[Guest guest]

In a message dated 10/28/2000 7:43:44 PM Central Standard Time,

edwinrmore@... writes:

> Physiatrist never counseled to tough it out and last as long as possible. He

> felt you lost more that way as opposed to helping the capability left to

> extend its usefulness as long as possible -- food for thought I think. EdM

>

> My doctor has encouraged me to grive the loss of things that I discover

> that I can no longer do, then move on and try to find an adaptive method to

> accomplish the same things. C

[Guest guest]

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

From: C1520@... <C1520@...>

egroups <egroups>

Date: Sunday, October 29, 2000 9:46 PM

Subject: Re: [] Progression

>In a message dated 10/28/2000 7:43:44 PM Central Standard Time,

>edwinrmore@... writes:

>

>

>> Physiatrist never counseled to tough it out and last as long as possible.

He

>> felt you lost more that way as opposed to helping the capability left to

>> extend its usefulness as long as possible -- food for thought I think.

EdM

>>

>> My doctor has encouraged me to grive the loss of things that I discover

>> that I can no longer do, then move on and try to find an adaptive method

to

>> accomplish the same things. C

>

>

>>Sometimes when I can no longer do something the old way, I find " new " ways

of doing it and am proud of myself for adapting. I may have lost many

things or ways of doing things but I have a bright mind and can adapt. Hey

the " bright mind " part is my opinion only! LOL, ~>Becky M.

[Guest guest]

> > My doctor has encouraged me to grive the loss of things that I

discover

> > that I can no longer do, then move on and try to find an adaptive

method to

> > accomplish the same things. C

,

This advice from your doctor is solid, no-nonsense advice.

I like it. Grieving the loss of ability is something we often don't

allow ourselves to do. By allowing ourselves to say goodbye to a

part of our physical selves that is no longer there, we ourselves

to open up to brand new ways of living effective and productive lives.

Ruth Warren

[Guest guest]

> > My doctor has encouraged me to grive the loss of things that I

discover

> > that I can no longer do, then move on and try to find an adaptive

method to

> > accomplish the same things. C

Hi, and all.

That's a terrific statement for a doc to make! Sounds like one of

those rare physicians who is also a caring and compassionate person!

Wish there were more of them.

Carolyn

[Guest guest]

Hi Everyone

Sorry if I sounded a little blunt in that last post but I get

so...Peeved when a Dr. sayss we have no pain.....or tremors.....They

really need to be positive of what they say before they say it and

personally to many of these Doctors now-a-days think they know it all

when case in point they don't. From my personal progression I really

got worse after my surgeries then it seemed to slow for about a couple

of years and then pick back up by that I mean more tremors, muscle

spasms and increase in pain which is mostly in my right lower back into

my hip area and down my leg into my foot. I think it has also gotton

worse since I fell in March of this year. I have pain that seems to

move around also from my shoulders down to my arms into my hands.

Sometimes I feel my body just wants to curlup on me. My pain Dr. tells

me I am tensed up and he seemed to get an idea of this just by my walk.

Also when I walk I get like a clicking sound coming from my hip and I

seem to walk with a limp like one leg is longer than the other (this

just recently). Well all thats pretty much my take on me......I do all

I can and what I can and I am pretty optimistic and don't let it get me

down because life is short enough so why not enjoy all I can and as much

as I can BUT I get rather irritated at Drs. who want to tell me how I

FEEL......Have a safe Halloween!!!