Re: welcome Ray and balance

[Guest guest]

Hi Ray and welcome. I was " diagnosed " 25 years ago, but I still don't know what

type I have. i was 22 at the time, so needless to say it was quite scary to be

starting my adult life with a challenge.

My balance is non-existant, but not too many people notice because most of us

have learned to steer conversations over to a wall, table or just about

anything we can lean on. Sometimes the cane is just not enough and i find myself

concentrating so much on keeping my balance that I lose track of the

conversation!

I use AFOs on both legs (which most of you here know that mine are crap and I am

still looking!) I have slowly made my home easier for me; raised toilet seats,

handle bars, ramps leading into the house and I am the one who placed the

furniture and all of the kitchen items to make it easiest for me. Most people

who come to my home don't even know that i am handicapped (or whatever the

proper word is these days )

Do things you love. Even if it is going outside on a beautiful day with

something to read; a movie; lunch with someone who makes you laugh.  On days you

feel good, then tackle a harder task. LISTEN to your body. I tend to overdue it

sometimes and unfortunately, us with CMT pay for that mistake and then need to

rest much longer than others. I take a nap everyday before dinner and that

rejuvenates me to the point that I can make dinner, do the laundry, spend time

with the family and watch my favorite tv shows (so basically a normal American

night!)

Each time a new weakness or pain happens, it is very hard emotionally and

sometimes it takes some time to re-adjust. Mine has also moved to my hands and

arms, but I am very lucky I do not have pain, just achiness. So give yourself

some small time to grieve and then re-adjust.

Attitude is everything with this condition. When I had to start using a scooter

at 43 years old, i was devastated. But thanks to great friends with and even

better senses of humor, we made it fun and I got over the hump of adjusting to

using it and now actually find it fun!

As far as feeling a freak, i know what you mean. Over the years of having this,

i now just hold my head up (that is when i am not looking down watching out for

pebbles and any other obstacle) and have an air of confidence that really works

wonders. You may feel like this now, but trust me, no one else looks at you that

way. What they see is a man who has a disability who is not laying in bed

feeling sorry for himself, but instead going about doing all he needs to do and

THAT is admirable!!!!!!!

I have found doing physical therapy has helped my attitude because it is

something tangible that you can see results. Find what works for you, pool

therapy, physical therapy, small weight training.......... Start with a GOOD PT

who can lead you in the right direction.

In conclusion, you have found the right group. 8 years ago, i was too scared to

read all these emails and learn too much. Now i realize that knowledge is power

and you will find that there is always 1 or many of us who can understand and

relate to whatever you are going through.

Jackie

[Guest guest]

Hello Ray and Group –

I just want to say welcome to Ray and a fond hello to the group –

I'm 59 yrs and was diagnosed in Dec 2008 with CMT. I've suspected something for

25 yrs. when I could no longer teach Karate to youth in this area because I

could not maintain my balance. At my family reunion I shared my CMT issues with

family members only to find that most of them where having the same symptoms.

Many of us went to be test by my neurologist at s Hopkins and were found to

have the disease. So far, I've been able to trace it back four generations.

The disease really ramped up for me in 2003 when I had to look for walls to lean

on when I was not trying to walk. That's when I retired early from my job of 25

years. I was then able to land a consultant job in IT System Security working

from home. My typing skills seriously diminished in 2008 because I began to

lose sensitivity in my hands and fingers. Typing and writing are no longer my

strengths. …but now I am the webmaster for my church and loving it. I was able

to redesign the homepage and manage/maintain it. LOVE IT!

I fell at the end of September 2009 walking in my home in the dark (duh!) and

seriously broke my wrist in a couple of places. Luckily my ortho was quite

familiar with CMT and suggested immediate surgery. Thank goodness, I have had a

very good PT and was put " on my own " as of today by my ortho. I will be still

doing my PT at home but I'm already back to about 90% of flexibility and

strength. My sister (who has CMT also) and fell in June is going through the

same exercise.

Like others in I have since made all kinds of adjustments to help improve

my quality of life…double hand-rails on all staircases (left and right sides),

pull bars in bathrooms, night-lights, etc.

Keep your chin up, but know yourself. Stay tuned-in to this site. I love to

read the commentary and commitment to and from the members.

-wheels

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