Re: What is your best emotional assett in managing CMT?

[Guest guest]

Sense of humor!!!

[Guest guest]

I think my most emotional asset in managing my CMT is knowing that I do

have CMT and I expect to have some discomfort. The meds that I take are

working most of the time. Thank goodness. I dress as I usually have except for

shoes...and after setting down at a table who sees my feet? If not at a table

my braces are sometimes a topic of conversation and that is OK.

Jeanann

[Guest guest]

Hi Gretchen...tough,but thought provoking topic!

I'm sitting here trying to peck out a response with one hand 'cause I broke my

left wrist last Sunday after losing my balance and falling...yet I stay positive

and find that as my best emotional asset!

I was diagnosed with CMT earlier this year by my neurologists at s Hopkins.

I've been having the symptoms very slowly progress for about 26 years but they

decided to take the " express lane " beginning in 2003. (I'm 59 years old and

retired as a computer IT Security analyst at the end of last year because of

CMT.

The areas of quality of life that I most pay attention to include my physical

functioning, my bodily pain, my general health, my social functionality, and my

emotional/mental health.

Even though I may appear to others to be coping in participating in an event I

realize that I stuggle to keep up and exert much, much more energy than non-CMT

affected people.

These days I do a " go " / " no go " decision process with activities that I believe

will challenge my quality of life issues.

Let me give a recent example:

Last year I agreed to go to the Football Hall of Fame Induction in Canton, OH.

Although I enjoyed the speeches getting there (into my stadium seat) represented

the " Perfect Storm. " The drive to Canton (I was a Passenger) was not bad because

I insisted on fairly frequent stops because of either CMT or arthritis issues

with my hip. When we got there we could not park any closer than a couple of

miles..then there was a bus to take us to the museum/stadium. So far..not a

problem for someone with CMT. At the museum/stadium...lot of hills and

ramps...had to find a seat in the museum 'cause I can't walk for distancss.

Finding a seat was an issue. ...then to the stadium..down a long ramp with

nothing to hold onto..when I finally got down to where we would find our seats

in the " nosebleed section " at the top of the bleechers...lots of steps, no

railing..and young folks moving at 100 mph...then our seats were in the middle

of where folks were already in places. ..Here's the kicker...after the wonderful

ceremony was over I waited of hundreds to move down the unrailed steps..nearly

fell..walked up the long ramp towards the museum then had to wait for about

20,000 folks to take the bus back to the parking area. When I finally got to the

line to go to the buses I moved at one step every half hour..because of CMT I

don't take short steps very well..I see a spot in the distance and walk toward

it with pace.

The moral to this story is.... " KNOW YOUR LIMITATIONS " and investigate the

logistics of the event.

By the way, I'd probably go again...but I'd plan better!

-Wheels

[Guest guest]

Emotional flexibility.

[Guest guest]

I only worry about things I have control over.

CMT isn't one of them.

Just let it go.

Regards.

[Guest guest]

My mother used to say that I walk with my head...She meant that I have the

ability to concentrate very hard and that makes me walk as well as I do. Sure, I

do get tired and concentration is not so good at those times, but am really good

at planning ahead too, so that I am either very active or at home, resting.

Beata

 

[Guest guest]

I never cry. I am jaded and don't believe in much. I am much healthier now than

I used to be.

[Guest guest]

I think my best asset is that I get pleasure from solving problems. And CMT

presents so many! Another is my ability to see the funny side of things, always

something to laugh about.

Ruth

 

 

     

[Guest guest]

Resilance

and creativity

[Guest guest]

I cry if I need to it is my healing process and did you know there is actual a

chemical that is released from your tears that makes it healthy to cry.

Heidi