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Welcome Robin

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Welcome,

I am sure you will find a lot of support on this list.

I have a 13 yr old daughter and she has had a lot of problems with

anxiety...... We have been challenged a lot by her " constant neediness " of

us (hubby and me), especially as bedtime approaches. She sees the negative

in most things (especially if it could possibly be scary), does a lot of

" awful-izing " , and gets clingy, whining, and babyish. We are just beginning

to realize a lot of that may be related to her " noisy thoughts " and the fear

she has to be alone with her thoughts-----that are really OCD thoughts. She

is only beginning to share some of the intrusive thoughts, such as an urge to

strike out at other, to swear, and hurt herself.....

Please be sure to write more about and I would love to hear more on

the sibling relationship she has with her younger brother too, especially

where you have seen some anxiety in him as well.......

Again, welcome, and looking forward to hearing more of your story

Laurie in WI

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  • 3 years later...
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Welcome Robin. First, my CMT experience with insurance has never been a

problem, either in the U.S. or out. And I have a pre existing diagnosis

and history of CMT since childhood. I have two plans as well.

About ten years ago I started wearing orthotics. They not only work at

keeping my gait to a heel-toe position (because by nature I am a toe

walker) they help with balance, and also give my feet a 'shock absorber'

so they don't burn all the time.

Running - well, I'm not doing it on land, but in a pool now - with a

easier surface on my back and no stress on joints. Do you run on

concrete or grass or sand? With any exercise I have done, I always work

at my own pace and stop if I need too or take a day or two off. This is

something that is an individual as your CMT is. Any exercise I have ever

done, biking, swimming, yoga, aerobics, and now an aquatics workout has

not adversely affected my CMT. If anything, I feel great after the

exercise, and have strengthened muscle.

If I am on my feet all day, I absolutely need to change shoes a few

times. But then most of my CMT issues are in my feet. I used to teach

for awhile - high school seniors - I didn't quit because of CMT but

because of the discipline problems I had to fight - even at a private

school. I have changed careers numerous times, since I kept getting

better offers.

Back to orthotics - I started with 1/2 ones, then found I needed some

added support under my toes, so I have full othotics. Not a problem,

just go in to the orthotist once a year for a check on worn areas or

anything that needs to be adjusted. Any adjustments are minor.

I have chosen to see one main doctor - an internist, and then I also

have an orthopedist who has helped my back since a disc slipped. I

prefer to coordinate my own healthcare, being proactive about it. I

choose my own doctors, I do ask each for recommendations for others if

needed. I also ask each doctor to send me copies of the paperwork, so I

have a file at home. They are very happy to do this. Even the PT was

good about this. My early CMT days were spent in the UCLA medical

system, and it was a nightmare for me.

Sorry I can't recommend a doctor in the Madison area. I live in Calif.

Again, welcome. Hope you enjoy .

~ Gretchen

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