MD question

[Guest guest]

I thought I understood that CMT is not a form of MD. I also heard the MD

ambassador is a 10 year old girl who has CMT. IS that not confusing as I

try to tell people what CMT is it almost seems easier to mention MD. With

CMT awareness week coming up I am trying to get out as much info as I

possibly can but it can get confusing and when you say MD people say oh yea

of course.

Lori

From: [mailto: ] On Behalf Of

-owner

Sent: Tuesday, August 31, 2010 12:52 PM

Subject: Be the best you can be with what's given to you

" Be the best you can be with what's given to you. " It seems so simple. But

it's not just empty words for Neuenschwander. It's the way he lives

his life.

http://www.fox28.com/Global/story.asp?S=13067603

He says " It's easy for people around you sometimes to say, oh you have an

excuse for not doing this or that. We can all come up with excuses why we

can't do things. "

has a form of muscular dystrophy called Charcot-Marie Tooth--or CMT.

He's had it all his life. Over time, CMT causes the muscles in the arms and

the legs to atrophy. But that won't stop him.

From the moment he started his job as a financial advisor at ,

he had to do figure out how to get the job done his own way. " Instead of

walking up to doors, I would do that from a scooter or from a wheelchair, "

says, " Ringing a bell with a couple steps in front of the door, I had

a little stick that I would ring the bell. By the time people would come to

the door, I'd have the stick put away and they'd look at me a little bit

like, wait a minute, how did you ring my bell? "

For the rare moments when he is struggling---a few words of encouragement

from his wife keep him going. says they've been figuring things

out for 32 years, now. " He's such a great listener, " she says, " and I think

he has a sensitivity that, maybe that, some others don't have. "

[Guest guest]

Peeple assume because I go to an MDA clinic I have MD.

>

> I thought I understood that CMT is not a form of MD. I also heard the MD

> ambassador is a 10 year old girl who has CMT. IS that not confusing as I

> try to tell people what CMT is it almost seems easier to mention MD. With

> CMT awareness week coming up I am trying to get out as much info as I

> possibly can but it can get confusing and when you say MD people say oh yea

> of course.

>

>

>

> Lori

>

>

>

> From: [mailto: ] On Behalf Of

> -owner

> Sent: Tuesday, August 31, 2010 12:52 PM

>

> Subject: Be the best you can be with what's given to you

>

>

>

>

>

> " Be the best you can be with what's given to you. " It seems so simple. But

> it's not just empty words for Neuenschwander. It's the way he lives

> his life.

>

> http://www.fox28.com/Global/story.asp?S=13067603

>

> He says " It's easy for people around you sometimes to say, oh you have an

> excuse for not doing this or that. We can all come up with excuses why we

> can't do things. "

>

> has a form of muscular dystrophy called Charcot-Marie Tooth--or CMT.

> He's had it all his life. Over time, CMT causes the muscles in the arms and

> the legs to atrophy. But that won't stop him.

>

> From the moment he started his job as a financial advisor at ,

> he had to do figure out how to get the job done his own way. " Instead of

> walking up to doors, I would do that from a scooter or from a wheelchair, "

> says, " Ringing a bell with a couple steps in front of the door, I had

> a little stick that I would ring the bell. By the time people would come to

> the door, I'd have the stick put away and they'd look at me a little bit

> like, wait a minute, how did you ring my bell? "

>

> For the rare moments when he is struggling---a few words of encouragement

> from his wife keep him going. says they've been figuring things

> out for 32 years, now. " He's such a great listener, " she says, " and I think

> he has a sensitivity that, maybe that, some others don't have. "

>

>

>

>

>

>