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Re: AFO support needed

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In a message dated 6/9/2001 7:58:06 PM Central Daylight Time,

benpalombo@... writes:

> . Some positive input from my fellow CMTers will

> help.

>

, I know how you feel. It sometimes seems that with AFO's there is

always something that needs adjusting. I have been having to wear mine for

way too many hours over the past two weeks because my father-in-law was in

the hospital and there was a lot of walking back and forth to ICU and VERY

long days at the hospital. He died Friday. When we finally had two minutes to

sit down and relax, I discovered that my left AFO had rubbed a pressure sore

on two places on my left foot. Now I have to be careful and let them have a

little time off. I felt really clumsy all day today without them. I thought I

hated wearing them, but I found out how much I need them.

Hang in there. If it's any consolation, I know what it's like to have

unsupportive parents where CMT is concerned. My sister and I laugh about it

now, but when I was growing up I was constantly falling and spraining and

breaking my ankles. She says, " You'd think they (my parents) would have

caught on after the fifth or sixth time that something was a little off. " I

think denial was a big part of it, their children couldn't have anything

wrong with them. For a long time I was very bitter about it all, but before

my mother died we sorted through it all and both were at peace with the whole

deal. My father still acts like I can do anything, but that's okay.

Keep on keeping on, C

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Hi ,

Is it possible that part of the problem might be that the toe well of your shoe

is not deep enough? Try pulling out the insole and see if that helps any.

Also, by all means, make an appointment right away to have the orthotist make

the necessary adjustments. AFOs that fit properly can make a world of

difference in your mobility. What design are your AFOs? Are they hinged at the

ankle or fixed ankle or any special style? I am in the market for new ones and

am seriously considering the Virtual Gait double helix style. Don't be

discouraged, as it often takes several tries before getting a perfect fit. You

might try marking your foot where it is pinching on your next visit, or wear

them long enough so the red spots are still apparent when he looks at your foot.

Persevere and let us know how you make out. Hopefully your folks will become

more supportive. In the meantime you have your your family and all of us in

your corner!

Ruth Subject: AFO support needed

Hi CMTers,

I have had my new AFO'S for two weeks now and I am having a

bit of a bad patch at the moment. The left leg AFO is needing to

be adjusted as it is cutting off my circulation to my toes so I have

stopped wearing them. I feel a bit deflated at the moment, the

positive attitude has decreased considerably. I think the worst

part is my mum and dad returned from holiday on Tuesday and

as usual with anything conected with CMT had not registered an

interest in my AFO'S they seem to think it is a step back ward as I

will now always have to rely on them. I am so frustrated that I let

them get to me as my husband and daughter are so supportive

in these matters. Some positive input from my fellow CMTers will

help.

P

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I, alas, do wear AFO's

Whenever a new AFO is made, you have to wear it around a bit to see how it fits.

Odds are it won't be quite right. You then need to make an appointment for an

adjustment. It may take several adjustment visits before it is right.

I've been to several orthodists and it has always been standard practice to

schedule adjustment appointments.

I've had my current pair of AFO's for over a year and I still go in every now

and then for adjustments as my legs/feet change.

Hope that this helps!

-mari

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In a message dated 6/10/2001 11:32:59 PM Pacific Daylight Time,

rfc40@... writes:

<< I think the worst

part is my mum and dad returned from holiday on Tuesday and

as usual with anything conected with CMT had not registered an

interest in my AFO'S they seem to think it is a step back ward as I

will now always have to rely on them. >>

, Your parents are wrong. With AFO you will walk with less fatigue. You

willl be safer from falls. They can also preserve the muscles from getting

over used. You are doing the best thing you can for yourself.

jenny

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