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Hi Barb,

Owen here,

You said the person making your AFOs said " He has mentioned that plastic afos

are

not for me cause that would restrict my ankle movement and doesn't think they

would

work cause of my severe turning of the ankles, " I believe that's exactly what

they

are suppose to do. Stop the front of your foot from dropping and to stop the

ankle

from turning over. Scooters are good. Ask the neurologist to explain to the

person

making your AFOs what the AFOs are expected to do. My guess is the person does

not

understand CMT at all.

Happy Trails

Owen

classicb@... wrote:

> Hi Everyone,

> I couldn't let this subject pass by without letting you know what I've been

> going thru getting someone who would listen to me and understand my needs.

> For those that have been on the list for awhile, might remember that it has

> taken me 3yrs. and 3 different companies to try and get this right. My braces

> are the " old metal type " attached to one pair of shoes with the orthotics

inside.

> As a matter of fact, I have another appt. this Thursday as my ankle is red and

> sore from trying to wear them. He has mentioned that plastic afos are not for

> me cause that would restrict my ankle movement and doesn't think they would

> work cause of my severe turning of the ankles, and would make my condition

speed

> up. I sometimes feel like I must be the worst case in history, although

listening

> to some of you, I don't think so. I use a cane (different colors to match my

> clothing), also a walker with a seat when I'm going a long ways. When I see

> my Neuro in March, I'm going to swallow my pride and ask about a scooter. I

> would be so happy to wear the afos if only they felt good. It's bad enough

> to have the pain that comes with CMT and even to have the added weight(5lbs)of

> metal & shoes, I would gladly be happy to be able to walk easier and further.

> Please keep me in your thoughts on Thursday. I'll keep you posted.

> Barb

> No.Calif.

>

>

> Remember! We are here to share our personal experience on

> living positive, quality lives with CMT.

>

>

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  • 1 month later...
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Hi Everyone

I said I'd send along the info about my AFO adjustment

and the knee pain. Just been giving the most recent

changes a " getting used to " period.

I am kinda bummed out with myself. I realized when

the orthotist made the cast of my leg and foot I

DIDN'T STAND UP! I KNOW better! I guess I just

figured my left foot wouldn't be difficult to fit

since it was always my " good " foot. But something

isn't right. I can't figure it out. He cut the upper

part lower behind my knee so that I'm not

hyperextending my knee, and the pain behind my knee is

gone. But now I get pain in front on the lateral

side(left leg, left side) of the knee. It's aching as

I write from the today's limited walking. The AFO's

purpose was to stop me from rolling out on my ankle,

as I was trying to use my muscles to do that which

caused a chronically inflamed overworked, and painful

muscle along the lateral aspect of my calf. I get the

feeling there isn't enough lift on the lateral aspect

of my foot, or the heel is lower than my forefoot, or

something. Looking at it, it " looks " okay. I am so

frustrated, as my difficult foot's AFO was a breeze a

year ago!

I guess it's another stinking appointment with the

orthotist, but he seems more dumb founded than I was!

I wish I could take all of you with me to get this

thing fixed the right way! And I have a St. 's

Day Parade to go to in Pittsburgh this Saturday! I

really hope I can get this fixed properly before then!

Thanks for letting me vent. I'll keep you all posted.

Joyce

Thanks. No one in my circle of friends and family

here understands how frustrating this is!

__________________________________________________

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  • 1 month later...
Guest guest

I've just been given a prescription for an AFO for my left

leg or foot. I have one for my right but haven't had to use it as

of lately. But now I have foot drop with both sides and quite a

bit of a problem with balance.

My old one doesn't have a hinge is it hard to walk or drive with

2 unhinged AFOs I have already experienced the right shoe problem

so I have a pair of shoes that my right AFO fit in will they be

OK to use with both AFOs? This is not going to affect my driving

since I drive with my hands but how difficult is it to get in or

out? Is there a problem in my wheelchair? So many ?'s and not too

many answers from the Doc. Just that " You'll work it out " .

Not an encouraging statement.

Stout

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  • 11 months later...

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