just ignorant and stubborn?

January 21, 2002

Hi, I am new to this site and group, though not new to CMT. I was\

diagnosed when I was 13, but have pretty much been coping with this

on my own for the last 12 years. I have recently moved to Denver,

and thought it would be a good idea to see a specialist (neurologist)

here since I had never really remember speaking to a doctor that I

felt was any help to me. This time the doctor WAS knowledgeable and

seemed to have a few creative suggestions that other individuals with

CMT use to cope with everyday frustrations. I have known going into

every doctor's appointment that basically my future holds two options-

- AFO's (leg braces) or surgury....as many of you have also most

likely dealt with this reality. I have plenty to be grateful for,

and feel I cope/ compensate as best I can...hey, it's a way of life

for us:) This time however, I did not feel I had the option. The

doctor wrote the prescription...saying " You will try them " ...and " you

will come back and tell me how it is going " . Perhaps he did not give

me the option because no one is going to be overjoyed in making this

transition in their life......but has he no empathy?! ANyway, the

point of this posting is simply to hear from those of you who

have " Made the choice " to wear AFO's. I need to hear from someone

who has walked in my shoes...and know what it feels like...knowing

that your life could be easier in some ways.....yet resistant because

of self- pride...or self- esteem....or pure will not wanting to give

in the an alternative lifestyle.....whatever the mental obstacle is.

I am sure there are things I have not considered. I may just be

resistant right now because everyone that loves me in my life wants

so much to help.....and the next logical step is leg braces. Has

anyone else ever had a hard time with this? Is it just me? I want

so much to do what is right for me......but I have never ever wanted

to give up or give in before I need to....and even then it is hard.

Perhaps I need to see the situation in a new light.....a more

positive light...instead of feeling self- defeated. Any

positive...or realistic feedback is welcome. Thanks so much.....

Mamie

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