Marnie - AFO's...

[Guest guest]

Hi Marnie:

My name is Marti. I am 31 and have CMT Type 2. I can TOTALLY

identify with all of your thoughts and feelings regarding AFO's. I have a

few ideas and I'll also share some of my experiences.

First off, have you tried in shoe orthotics instead???? These are

just inserts to put in your shoes that can help stabilize your feet and also

improve walking. I have fournd that in shoe orthotics, while not quite as

effective as AFO's, do make a big difference in the way I walk and in my

endurance.

I technically have AFO's but I don't wear them much. One reason I

don't wear them is because I know I need new ones as they do not fit

properly. Even if I did have new ones, however, I think I would only wear

them for long walks/hikes or times I know I'll have to be on my feet for a

lengthy duration. Part of the reason I avoid wearing them is vanity but the

other part is that the more I have worn them, the more I've needed to wear

them.

I was diagnosed w/ neuropathy in my feet and legs at age 16. The year

before the diagnosis, the problems were made obvious when I played Junior

Varsity Lacrosse for a year and could not keep up with the rest of the team -

I ran much slower and turned my ankles a lot.

In any event, although I actually made it through that season of

Lacrosse, one year later I was diagnosed w/ neuropathy and given AFO's!!!

Initially I liked the AFO's because I could walk REALLY fast with little

effort. I also found that I could make them invisible by wearing lots of

stylish boots and high top sneakers (in style at the time). However, once

the hot weather and short season came along, I stopped wearing them. During

the year or so that I wore them consistently I lost more calf muscle and size

than probably any other time in my life!! Part of this is the natural CMT

process, but I also think part of it is a result of wearing the AFO's and

thus not having to use parts of my calves and ankles any more. A few years

later I looked back at my old AFO's and couldn't believe I ever had legs big

enough to fit in them! I am rather angry at my orthopedist now for giving me

these AFO's so early. It seems to me that if I was able to play lacrosse,

albeit badly, I was still able to ambulate without braces and giving me the

braces too early just hastened progression.

Anyway, I stopped wearing the AFO's for several years and went into

denial mode. I sort of woke up right before grad school and went to my old

orthotist and asked for something more attractive. They gave me some " off

the shelf " AFO's that were much smaller and easier to fit in shoes. I wore

these for long walks like a 20 mile walk for hunger that I attended. After a

while, I began wearing them to go to the gym, to work out, and for everyday

use. Once again, a year or so later I found that my walking and balance

without the AFO's had gotten MUCH worse since the time I began wearing them

consistently again.

This past year I was able to get some new in shoe orthotics. While

these don't help a lot with my balance, and aren't quite as good as the old

AFO's, they make a BIG difference in how I walk; I can walk much faster and

much further with my orthotics than without.

I KNOW that AFO's are very necessary and are good for me; they keep me

from getting injuries and keep me on my feet. Nonetheless, my past

experience has shown me that they may make me lose more calf muscle and

seemingly progress quicker. Since I am still rather mildly affected by CMT

(don't fall too much, can still ride a bike, ski, rollerblade and walk short

distances w/o a problem) I have decided on the following policy. For VERY

short distances and around the house I do not wear AFO's or orthotics, I

often just wear socks w/o shoes. For work and medium length distances (the

grocery store, parking lots, shopping), I wear my orthotics. If I need to

walk a long distance and keep up with other people, or if I want to go on a

hike or very long walk, I'll wear AFO's.

This works for me, but again, all of our situations are somewhat

different. I have a forefoot drop, very high arched feet, hammer toes and

atrophying of calf muscles. I am still able to do most tasks, however,

because I have very strong thighs and have kept active.

Whatever your decision, if it is a well-informed one it will be right

for you. Just please think carefully before risking serious injury or

continued damage to your feet on account of vanity alone. There are many

solutions.

Peace, - Marti