parents pushing CMT kids

[Guest guest]

Hi again louise,

Here is the basic facts about my childhood CMT. In essence, I had

great fatigue from something like walking home the mile and a half

from school. I'd sort of " fall in " the front door. Mom would sit me

down for 1/2 hour, I'd have a snack, talk non stop about school, THEN

go out in our yard and start playing hopskotch! True story!

There is something in my CMT experience that just allows for what I

call " a second wind " - after a long walk like from school to home, or

at summer camp, all I needed was a " rest period " of sorts (I guess

this is like changing gears or something) then I got that " second

wind " and was on to something else, which sort of sounds like

Katelyn, maybe.

Also, something I learned about CMT when all we had was the

newsletter, but this really made sense to me (and Mom) It is this:

CMT muscles take twice the energy to do half the work of a non-

affected person. Print that out or enlarge it, and read it over and

over. Maybe that will help you understand my " second winds " and

Katelyn's too.

I never had ankle sprains or broke ankles or legs (lol, about 2 years

ago I managed to sprain my ankle on vacation and thought I was going

to die!)

But, I am wondering something about Katelyn's ankle - so she can

cheerlead, maybe talk to your doc, or better yet your physical

therapist and see if there is a way to either tape her ankle (for

motion control) or even wear a lightweight ASO type support like I

see the kids in soccer here wear.

~ Gretchen