Re: What CMT Means To Me

[Guest guest]

Having only been aware for the past couple of years that I have CMT, I'm

astounded at the wildly varying degrees to which others have the condition.

I agonize with people who have had debilitating CMT symptoms since

childhood, confining them to wheelchairs and/or lives of extreme pain. Yes,

I'm

now missing half my left foot thanks to CMT, and, yes, my hands are now

almost totally numb, and, no, I'm never going to be a contestant on " Dancing

With The Stars. " But I know this is nothing compared with what many CMT

sufferers have to endure.

That said...

Yeah, CMT (or " Shark Tooth, " as my wife calls it), can be a real pain in

the ass sometimes. My fine-motor skills have completely gone to hell. I'm

one of those dudes who actually enjoys assembling things that come with

instructions--bicycles, home-entertainment units, barbecue grills, etc. I'm

the guy that neighbors would come to on Christmas Eve to help put together

some complicated kids' toy that needed assembly.

No more. Just screwing in a light bulb is now a challenge. (But the flip

side is that I can now change a light bulb without using a potholder,

since I can't feel that the bulb is hot).

Some other observations:

--I used to be able to type like the wind. Using macros and shortcuts, I

could type an honest 300 WPM just a couple of years ago. As a career

journalist, this was an invaluable skill. Point of fact, I was one of probably

three reporters in my newsroom who could actually type by touch. I have no

idea what my typing speed is nowadays. I have to look at the keyboard,

since I can't feel the keys any more. I'm guessing I now type maybe 30

WPM--not counting errors.

--Something as simple as picking change up off a counter is now quite

difficult, as when you have numb fingers, it's pretty near impossible. And if

I drop a coin on the floor, no way am I going to try to pick it up, unless

it's in the privacy of my own home. (However, I refuse to get one of those

dumb plastic coin purses that old people carry, because , CMT or not,

plastic coin purses are just too stereotypical for those of us who are entering

the springtime of our senility).

--There is the occasional aesthetic benefit of wearing a leg brace. Since

I wear walking shorts 365 days of the year, my AFO is obvious. And in the

time that I've been wearing my AFO, not one single transient has asked me

for money. They've approached, noticed my AFO, and then veered off in the

other direction. I have no idea why this is. But I'm not complaining.

--Things can even get funny sometimes. I had a recent kitchen remodel and

my contractor was from England. One day he said, " I guess we can call you

'Six-Inch'. " I asked him why. He said, " Because you've only got half a

foot. " I damn near wet myself.

Anyhow, yes, I know the CMT is progressing, but fortunately, it's not

doing it quickly. When I try to explain CMT to people, I tell them that if my

cumulative condition had manifested itself over the past week, I'd probably

be bedridden, but since it's taken 67 years to get to where it's gotten

to, I really HAVE been able to adapt.

Yours for a CMT-free future,

[Guest guest]

I could read your comments all day long, . You are gifted when it comes to

writing! BTW, seeing your email address, you must love malamutes, right? My

family has had quite a bit of Siberians.

Like you, I have a very slow progressive form of CMT, and fortunately have been

able to " adapt " over the years. I laughed when you said your wife refers to

this disease as " Shark Tooth " disease because when people hear me say CMT, they

immediately ask about Country Music Television!

Karon

[Guest guest]

What CMT means for me is Charcot Marie Tooth (disease)and I have it. This means

I founded abput 13 years ago to encourage positive global discussion and

networking. I am an advocate for treatment and complete arrestment. This means I

am a Support Group Leader (3) I have no time to complain or spend in self-pity.

The 12 steps teach me nothing is impossible - even with CMT. My attidue is one

of gratitude for each and every breath I have to give.

References to animal oddities such as " stork legs " or " duck walk " or " slow as a

turtle " to describe CMT and me personally are offensive and discriminatory and I

quickly educate anyone who may even have the audacity to imply that.

Simply stated, I am a woman with CMT, working to create a more positive and

nationally recognized understanding of this neuromuscular disease.

Gretchen

[Guest guest]

,

I also enjoy reading your message. You remind me so much of my good friend

coakley, who has another neuromuscuar

disease and has written blogs telling his funny stories of balancing himself and

food at cocktail parties and other funny tidbits.

It really helps to have a good sense of humor when you have something like this

disease and to be able to

laugh at ourselves. Sure better than crying!

I will have to send you some of the stuff he has written. He might be your twin!

Jackie

Re: What CMT Means To Me

 

Having only been aware for the past couple of years that I have CMT, I'm

astounded at the wildly varying degrees to which others have the condition.

I agonize with people who have had debilitating CMT symptoms since

childhood, confining them to wheelchairs and/or lives of extreme pain. Yes, I'm

now missing half my left foot thanks to CMT, and, yes, my hands are now

almost totally numb, and, no, I'm never going to be a contestant on " Dancing

With The Stars. " But I know this is nothing compared with what many CMT

sufferers have to endure.

That said...

....

[Guest guest]

Tracey,

In answer to your question, email network is used worldwide, we are all in

different time zones. Say a topic started in the UK (which is a good 10 hour

time difference from those who lives on the US West Coast. In the meantime,

people from Toronto may be responding to a post from yesterday, while people in

the midwest have started another topic. Then maybe people in San Francisco may

jump in on the topic started in the UK.

So it depends on the time the posts are made. They come out in that order.

Sometimes the first post is so long, it is eliminated; ideally people should

/cut the part they are responding to and delete the rest before sending.

People post at all times/ is open 24 hrs a day. Moderators review each post

before sending to all.

Keep educating others! Forget other's opinions. Hold your head up high, be proud

of who you are. Be strong and love yourself from the inside out

Gretchen

>

>

>

>