Re: helping teens to deal with CMT

[Guest guest]

,

Well said!

Jackie

[Guest guest]

Hi ( and Deborah)...

Thank you so much for sharing your experiences..although my son's teenage

years are a decade away it gives me a good idea of the challenges, both

typical and CMT related, that lie ahead and is a real help for everyone with

children with CMT.

, Deborah I am so sorry to hear about your sons' challenges. I think

Gretchen's idea about 's book is a great one. As someone who has done

tons of outdoor hiking (I'm a field geologist), despite serious Asthma and

three sets of knee surgery, getting out and being in nature however you can

is really theraputic and builds great resilience. I am definately the

slowest mapper of my colleagues ('m not the one doing the 20 km traverses)

but finding any way that I can participate (hiking poles, short, slower

traverses) brings me great benefits. I have a friend who was born with a

spinal deformity that has severely hampered her lung function and some of

her mobility. She has been a very active member of a local hiking club,

...people happily take her backpack to help her go farther at whatever speed.

Its funny but after all the personal stories I've read over the last year or

so it seems that people more vulnerable to depression when their hands start

to be more affected. Are there other adaptive aids out there that help

hands? If we can build a robotic Canadarm for the shuttle with great

'hands' surely there are things to help hand strength and

function...perhaps making grips stronger without using as much force?

Take care

Sally

[Guest guest]

Thank you , for your very inspirational letter. I have read it a few times

today just to lift my spirits.