Anyone out there of a younger age dealing with CMT in their daily lives like me?

[Guest guest]

Hello all,

I am back to the group after being absent for a few years and I wondered if

there are any

men or women ages roughly 18 to 26 27 or so that are dealing with symptoms of

CMT. How

are you handling your symptoms...how are you functioning? Anyone working or

getting

accomodations at work? Anyone want to share a story of live and living with

this disease?

Basically I am just reaching out to those around my age who might be able to

relate to what I

am going through. Not many people I meet even know what CMT is other than

doctors and

other health professionals. So, it would be nice to talk to younger people out

there and see

how they are coping with CMT in their lives...to share their stories and I " ll

share mine..etc

Thanks to one and all. This is a great group!

Charlie (in Colorado)

Also anyone in Colorado??? Thanks again!

[Guest guest]

Charlie,

I am no longer that young, but i remember exactly how it felt at that age. I got

married at 24, pregnant by 26 and separated by 27. At the time my job was as a

nutrition

counselor and i had to walk back and forth to get my clients, although my co

workers sometimes would just walk them back to my office. When my clients

couldn't

remember my name, they just called me the little girl who walks with a limp

(nice)

I did have an active social life and that was difficult keeping up with my

girlfriends, but i made the best of it and would try to find situations where my

CMT was

not that noticable. At the time i did not wear braces, but had balance issues,

so always had to lean on something if i was talking to somebody. I felt so

different, since not

only was i not as strong as everyone, i also had the added issue of being a

single parent.

I have lots of stories of adaptations, funny situations and difficult times.

Feel free to email me and i would be happy to share those experiences. I still

feel like i am 25, if that helps!

jackie

[Guest guest]

Hi Jackie,

I am 42 and have been dealing with CMT since grade school. I was not as

lucky as you however. I had other health issues and could not have children.

Also with my walking and balance issues it was very hard to meet someone. I

can't do the normal things people would do. Like long walks, bike riding,

sports etc. I finally broke down and got 1 AFO when I was 20. and a second

one a couple years later. I started out wearing 1 sock under and 1 over so

it wasn't as noticeable. I just want to fit in. I live in a small town. And

I hate it when people stare. The other thing that is an issue for me is

shoes. I can't wear anything with any kind of heel at all. Also because of

the AFOs I can't wear dresses or skirts. So dressing up is harder.

How do you manage this challenge? I know some people in this group would not

worry about other people but I just want to fit in. I would appreciate any

advice.

Bobbie W

[Guest guest]

Bobbie,

I am 46 and I know exactly how you feel. I wore an AFO, but would not wear it

out because i was embarrassed. Then i did progress more and had to wear it more

often. The only advice i can give you is to hold your head up and forget you are

wearing them, and people will soon only notice your smile and your happy

disposition. I know that sounds easier said than done, but it really works. I

also could never do the things that others did to meet people, like walking,

biking...... but thank goodness i had good girlfriends and we would just go out

and listen to music and hang and we always looked like we were having fun, so

others gravitated to us.

I did just meet my husband 3 years ago, and guess what, he did not care about

the AFOs, the balance issues, the cane or anything else. And believe me, he was

the type of guy that was very picky with the types of girls he would date, from

what i have heard! Life can change on a dime and like i just told my girlfriend

the other day, i am walking (barely) testimony to that!

As far as dressing, i would wear shorts in the summer with cute Puma's or

Skechers and people always comment on how cute my shoes are. When dressing up, i

wear flat black shoes, now just sneakers, and you can wear long skirt (which is

very fashionable these days) or black pants and find a dynamic top to keep the

eyes upward. I like my AFOs to be hidden when i am dressing up. I know people

still look at me with questions in their eyes, but because i just do what needs

to be done, i actually believe that they are looking at me more with admiration

than anything else.

jackie

(i have written an article addressing my feelings over the years since being

diagnosed and if you would like, i can send you the article privately. let me

know)

[Guest guest]

Jackie,

Yes I would like to read the article. My email is bobbie424@...

Thanks so much!

Bobbie

[Guest guest]

Charlie,

Jonah Berger the author of " He Walks Like a Cowboy " a great inspirational book

about a man with CMT lives in Colorado. Gretchen posted about this book and if

you haven't read it I highly recommend it. He is in his 30's and his book is so

honest and inspirational about his journey with CMT. I'm a girl, yet I could

really relate to his story.

He also has a therapeutic mentoring service for special needs children in

Colorado.

Here is his website:http://www.therhythmwithin.net/about.htm

I hope you check it out.

Las Vegas