Re: Digest Number 246

[Guest guest]

Hi Brad

According to medical reports I have damage to the myelin sheath.....I am

46 and did not know I had Cmt till after a fall at work 6 yrs.

ago.....When I was young I had MUCH trouble in phys ed. they use to make

us back then try and do things that I honestly feel may have harmed me

(gymastics...tumbling...horse...parellel bars..etc.) Its good to find

out what you can now for your daughters sake. Exercise is good ...but

only the right kind.

Thats why I am so glad my daughter is getting all the info she can

regarding my Grandson.....I had my Doctors tell me " don't fall " LOL!!

like I want to.....but it seems that even the littlest falls seem to

trigger the CMT. I really went down hill after my surgeries as far as

the chronic pain and numbness....To each their own but my past

experieces have not been good and surgery is something I personally feel

has also helped make my CMT progress...but then again everyone is

different in regards to this disease.

Good luck with your Daughter...and whatever you do always LISTEN to her

on anything she has to say about her CMT....

Just ask Alisha...she is on the list....when you have Kids with this

disease sometimes they don't feel like they are being heard or are being

misunderstood. She is going to need lots of support. My Daughter has

run into some bugs with the School my Grandson goes to and she is his

best Advocate you would be surprised at the people who don't know or

understand what this disease is and how it effects us....especially the

kids.

Take Care

Cathy

CSCluv**

http://community.webtv.net/cat926/CATHYSCOOLCATCORNER

[Guest guest]

hi cathy thanks for the good advice but the problem we have is

carlene has very little speech so it is a obsticle but we have her

slowly tell us what is going on and between my wife and i we figure

it out we can tell alot by the way she acts she knows sign laguage

both asl and signed english but she won,t use it lol closes her

eyes she is a very funny child good sense of humor and very tuff

again thanks

brad

> Hi Brad

> According to medical reports I have damage to the myelin

sheath.....I am

> 46 and did not know I had Cmt till after a fall at work 6 yrs.

> ago.....When I was young I had MUCH trouble in phys ed. they use to

make

> us back then try and do things that I honestly feel may have harmed

me

> (gymastics...tumbling...horse...parellel bars..etc.) Its good to

find

> out what you can now for your daughters sake. Exercise is

good ...but

> only the right kind.

> Thats why I am so glad my daughter is getting all the info she can

> regarding my Grandson.....I had my Doctors tell me " don't fall "

LOL!!

> like I want to.....but it seems that even the littlest falls seem to

> trigger the CMT. I really went down hill after my surgeries as far

as

> the chronic pain and numbness....To each their own but my past

> experieces have not been good and surgery is something I personally

feel

> has also helped make my CMT progress...but then again everyone is

> different in regards to this disease.

> Good luck with your Daughter...and whatever you do always LISTEN to

her

> on anything she has to say about her CMT....

> Just ask Alisha...she is on the list....when you have Kids with this

> disease sometimes they don't feel like they are being heard or are

being

> misunderstood. She is going to need lots of support. My Daughter

has

> run into some bugs with the School my Grandson goes to and she is

his

> best Advocate you would be surprised at the people who don't know or

> understand what this disease is and how it effects us....especially

the

> kids.

> Take Care

> Cathy

>

>

>

>

> CSCluv**

>

>

>

>

>

> http://community.webtv.net/cat926/CATHYSCOOLCATCORNER