15 year old therapist visit - stretching etc-to Tammy

April 28, 2006

Hi Tammy,

I think it is really important to educate all the people we see in the

course of our CMT visits - doctors, therapists, orthotists, you name it. A

friend of mine following neurology in her medical training told me that doctors

and others are not used to CMT so use us as a chance to learn - that is fine,

but for goodness sake make sure they know about CMT a bit and understand all an

individual's biomechanics before they jump to conclusions.

I have extremely tight hamstrings and tendons from my hips to knees. My knees

dislocate. My Achilles are tight now, tighten than when I was younger. I am

hyper flexible, with the need to balance my flexibility with strength training

to make sure I am in line.

I have no scoliosis - actually compared with even " normal " people my PT says I

am remarkably in line with even hips. But my hips are tight - really tight -

worsened by a lot of walking and also stairs. Not good since I just moved into

a five story house with loads of stairs!

Anyway, you may want to consider having your 15 year old look into yoga classes.

It is first trendy - all the stars do it - and it is a god-send for me. It

loosens me up and strengthens at the same time - especially my hips. I cannot

describe the feeling of loose and strong - it is damn hardbut makes me feel much

better, and more grounded in my feet at the same time.

Orthotic inserts in my sneakers make my feet feel great. I have been

working with my orthotist for about a year and a half now to get the right cast

and creation for my shoes. It is hard with CMT as our feet constantly change,

but this is a good experiment - I get a new cast, take them away and go walking

to try them out, then about 6 weeks later go to the orthotist again and report.

It is a series of trial and error. I do not wear them all the time - I only

have them in my sneakers (Asics for good heal stability). Do not be scared of

an orthotic - they are not even noticeable in my sneakers and I am far more

confident physically with them in.

Braces to stretch seems extreme - try other things first. And find good people

who know about CMT - feel comfortable with the team you and your family use.

Anyway, that is all from me. I am enjoying a day off and watching my house

being transformed. We just moved so there is a lot of works going on around me.

It is a long weekend in the UK this weekend, so we are off for fresh air and to

let the electricians do their job in the house. I hope the weather cooperates!

All the best from your American friend in London,

Donna

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