Re: What are the chances of meeting a PE Aide with CMT? update

[Guest guest]

My husband talked to the PE aide last week. (He works at the school and just

now bothered to tell me he talked to her.) She told him that with PT and

stretching you can recover from CMT. She told him her dad got CMT more into his

30's and that he has lost all calf muscle. He said she is a young girl in her

early 20s. Ok so now I am feeling like I need to defend our CMT. I won't do

it but I feel like I want to tell her its nothing we have done wrong, we just

have a more progressive CMT. Now that I know her age I have to handle this

like she is scared like suggested. I still want to say something but

maybe I shouldn't..... I could be over reacting to something I was able to

repair with Adam like Barb suggested. So after reading 3 emails from ,

and Barb I see all sides.

Thank you girls!

[Guest guest]

Hi -Maybe you should talk with the aide and let her know there are

varying types and all else with CMT. You could be HELPING her. And do explain to

her that telling a child he/she could end up in a WC is terrifying.I do hope

Adam is feeling better about all this.

I know personally I didn't like hearing that from my doctor at age 21 and

I've proven him wrong!

I'm glad you've been able to see more sides to this dilema.Like I wrote

before; I know when it comes to our kids we definitely REACT.I've been there

myself many times.

Barb

[Guest guest]

,

How about getting Adam to give her some literature on CMT? -- the booklet from

HNF is good if you have one. You could also print off something from the

internet. He could do it as though he's bonding with her and helping her

understand CMT at the same time. I don't

think that would be perceived poorly.

I DON'T think that she should continue in her incorrect assessment that " with PT

and stretching you can recover from CMT " . That is totally wrong. In fact, I've

found that most PTs don't treat correctly for CMT and I've just quit using ones

locally because they were causing me more harm than good. The one thing that

WAS helping me was aqua therapy but the PT decided that I didn't need that

anymore!

You can't throw CMT into a bucket with other 'similar' problems because it

doesn't fit the same mold.

[Guest guest]

In a message dated 4/10/2006 10:17:38 A.M. Pacific Daylight Time,

klhavlik@... writes:

I DON'T think that she should continue in her incorrect assessment that

" with PT and stretching you can recover from CMT " . That is totally wrong.

Hi ,

If stretching helped as much as the PE aide suggested I would be cured. I

had to do so much of it when I was a kid. Really for no reason I had already

had heal cord lengthening. The pool like you mentioned was wonderful. I think

the school needs to stay out of medical PT.