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Re: living well in braces

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I was like your daughter when I was young. I slipped easily by the

pool and my parents had one from an early age. Rubber soled water

shoes might be good for her (Land's End, etc. ). She can always take

them off at the edge of the pool or, carry her.

Swimming is one of the few things she can do without the fear of

falling. She can float as well and it takes all the weight off her

joints.

Light is the word for her. I was put in heavy leather boots with metal

braces up the sides at around age 5. The weight of the boots and

braces made me worse, I'm sure. Walking to school was exhausting. I

fell so often. When I reached 14 I threw the the heavy braces in the

closet, and the heavy braces I was made to sleep in as well, to

supposedly stretch my tendons. I wore light moccasins and ballet shoes

as well as sandals.

Light shoes and slippers will be easier for her to walk with foot drop. A very

light custom ankle foot orthosis would help her walk without the drop foot.

Something I've mentioned before is that you can put on a high top

running shoes and tie a piece of fish line from the bow at the top to

the place where the place crosses on the toe and the fish line will

help hold up the foot if she wants to kick a ball or run hard. Try it

first. Dr. Butch Samson (retired) suggested this to a young New

Zealand soccer player who has CMT at a convention way, way back. I

thought it was a neat suggestion because Butch has CMT and had

discovered that himself.

I'm too old to know what else but I do know that professionals don't

know everything. They can't put themselves in your place or your

daughter's place. You're the mom, Follow your instincts and watch and

listen to your daughter. She'll tell you what works and what doesn't.

Just my two cents.

Cheers!

>

>

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Thanks very much . She doesn't like sneakers and the heaviness of them may

explain it. She says they hurt (even the sparkly ones she initially loved).

________________________________

From: Crabtree <linda@...>

Sent: Wed, January 12, 2011 3:59:00 PM

Subject: Re: living well in braces

I was like your daughter when I was young. I slipped easily by the

pool and my parents had one from an early age. Rubber soled water

shoes might be good for her (Land's End, etc. ). She can always take

them off at the edge of the pool or, carry her.

Swimming is one of the few things she can do without the fear of

falling. She can float as well and it takes all the weight off her

joints.

Light is the word for her. I was put in heavy leather boots with metal

braces up the sides at around age 5. The weight of the boots and

braces made me worse, I'm sure. Walking to school was exhausting. I

fell so often. When I reached 14 I threw the the heavy braces in the

closet, and the heavy braces I was made to sleep in as well, to

supposedly stretch my tendons. I wore light moccasins and ballet shoes

as well as sandals.

Light shoes and slippers will be easier for her to walk with foot drop. A very

light custom ankle foot orthosis would help her walk without the drop foot.

Something I've mentioned before is that you can put on a high top

running shoes and tie a piece of fish line from the bow at the top to

the place where the place crosses on the toe and the fish line will

help hold up the foot if she wants to kick a ball or run hard. Try it

first. Dr. Butch Samson (retired) suggested this to a young New

Zealand soccer player who has CMT at a convention way, way back. I

thought it was a neat suggestion because Butch has CMT and had

discovered that himself.

I'm too old to know what else but I do know that professionals don't

know everything. They can't put themselves in your place or your

daughter's place. You're the mom, Follow your instincts and watch and

listen to your daughter. She'll tell you what works and what doesn't.

Just my two cents.

Cheers!

>

>

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Hi Cherie,

I have CMT1A and am very active. I have a little difficulty with feeling sure

footed around the pool, but am fortunate that I can navigate my way around well.

In my experience (at my pool as well as paratriathlon open days with the British

Triathlon Foundation) people wear braces, and bring wheelchairs, to a pool's

edge without a problem. It is accepted at any pool, provided you discuss with

the pool staff first and lifeguards - at least at the pools I go to.

Discussion is important. At my gym a woman swims but takes off her prosthetic

leg poolside. The lifeguard moves it out of the way and brings it to her when

she is done swimming. Discussing with pool staff will enable you to arrange

similar for your daughter.

I think swimming is ideal exercise and it is great that you are looking for ways

to help your daughter enjoy it.

With best wishes from London,

Donna

www.beatinglimitations.com

------

Do people who swim wear the braces to the edge of the pool and then take them

off?

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