Re: welcome Billy

[Guest guest]

, you will find SO MUCH help and encouragement here. Gretchen and others on

the site are my experts and mentors. The important thing for me is continuing to

look on both sides of the picture, Yes, CMT is a damned drag with pain and

fatigue, etc. But life is also full of blessings, large & small. I share the bad

stuff with people I KNOW will understand, it isn't whining but sharing. And I

smile a lot, too.

Welcome,

Ruth

[Guest guest]

Welcome Bill and I do understand where you are comming from!!.........you had a

very interesting post. There are times I feel I'm falling apart too.Everything I

have another phy. loss I mourn for a few days. Until I pick myself up again, and

that is an on going thing for me.. and most of us with CMT I recon!

You know I also get more clumsy when I know or think someone is looking at me. I

wonder why that is? Would like to hear a response from the from on this..group?

I have not been able to do " what ever " for a long time. My CMT symptoms started

showing up when I was 4yrs. old. I never recall being able to run or jump

rope...ride a bike.Is it true one doesn't miss what they don't have?

My mother couldn't figure out why I wasn't a very active child and still wonders

why I'm in a w.chair to this day! Because my dad wasn't in one until he was

older! Didn't matter that he crawled to get to his car then crawled on his knees

to get to the truck at his work. Daaaaaaa. Love my mother but she has no

understanding of the word " disabled " !! I don't think she has time to for that

matter.

Right now I'm having a time finding shoes.....8in X 4in...gees maybe I can just

wear the shoe box.

Well blessings to ya and glad you are with this wonderful group!

Geri,

Minnesota

[Guest guest]

Hello !!!

Thank you for your words, but we are not heroes, we are only common people that

loves the life and to live, and you are one more of this team. ¿In the past can

you do almost everything? I think in the present, in your present, it is

possible, too. The diferences is that with CMT we gain a new ability, the

ability for discover the new ways for do almost everything. Many years ago I

learned to walk, but this don´t mean I leaf to road for the world. Everybody

watch me in the street, too, but with the time I learned to look behind their

eyes, many times they the aren´t seeing my wheelchair, they are looking to me,

to my beautiful face or my deep eyes. Are only watches and you can decide what

do you want people look of .

Welcome to our boat that travels for the sea of the life!!!

, from Bogota

[Guest guest]

,

Don't be so hard on yourself; many of us have been dealing with this for many

many years. Although I feel I am at a decent acceptance level of my condition, I

too get " paranoid " and sometimes feel like I walk so much worse when others are

" watching " me. It's kind of like my son who always plays basketball well when we

are not there, but when his dad is there he doesn't shoot any baskets!

As far as bracing, you will get much advice and everyone is different. I have

yet to find the " perfect " thing for me, but ask others on here when you find

something or someone because everyone here is very knowledgable.

For me, the lighter weight shoes like Merrell, Sketchers have worked for me, but

it depends on the brace of how much shoe support you need. Everyone else here

loves New Balance, but they feel heavy on my feet because my quads are so weak.

Sometime it is OK to whine and feel sorry for yourself, but limit it to only an

hour! Then look at all your great qualities that CMT cannot ever take away, like

kindess, strength, intelligence, humor...... Sometimes I have to have my friends

and family remind me of this!

Jackie