Re: welcome Selfish Genome and AFO

[Guest guest]

Selfish Genome/Gene:

Welcome. Coming to terms with a crippling disease is difficult an any age, but

at 18...

Your question about an AFO allowing you to walk normally, probably

not. The reasons for wearing an AFO are both comfort and safety. I

denied my need for an AFO but one of my doctors asked me how would I

like to break my hip tripping over a blade of grass. I understood.

The AFO keeps your toes up and out of the way of most things that are

waiting to jump up and trip you. The word most is important as I found

out. One thing an AFO doesn't protect against is highly waxed floors.

I completed a full gainer with a half twist one summer while walking

in a school with newly waxed floors. The dive was scored 7.5 by those

walking, but the sliding PDA and cell phone took away some style

points. This summer I hade three close calls but no dives worth scoring.

The AFO also stabilizes your ankle. Depending on your muscles, either

a toe-on or toe-off may be fitted. The toe-on will support your ankle

for foot drop and give support for you ankle while walking. the

toe-off will also handle foot drop but give more lateral support to

your ankle.

As to coming to terms with disease, I always fall back on the line I

gave to clients in my consulting days -- " It is what it is. " It's not

we want, it's not what we thought it would be, but it is what it is.

Back in the day there was a great baseball promoter/owner named Bill

Veeck. While the owner of the St. Louis Browns, Veeck sent Eddie

Gaedel up a pinch hitter. The interesting fact about Gaedel was that

he was 3'7 " tall and weighed 65 pounds. Veeck was a showman and the

crowd loved it. Here is a link if your interested:

http://en.wikipedia.org/wiki/Eddie_Gaedel

I bring up Veeck because he lost his leg in WW II and used a wood peg

to get around. He used his peg to great benefit as in meetings and

much to the discomfort of other baseball bigwigs, he would pull up his

drooping sock and drive in a thumbtack to keep it up.

Veeck wrote an great autobiography of his life -- " Veeck as in Wreck "

-- and titled the last chapter,'I'm Not Handicapped; I'm Crippled'.

In the chapter written well before the PC term " disabled " was is

common use, he says " I am absolutely sure of one thing. A cripple

cannot coddle himself. Once you coddle yourself, you're admitting that

you can't do what anyone else can do and then you're through. Coddling

yourself is a way of apologizing for yourself, and I am darned if I

will apologize for anything beyond my control. "

I first read these lines at age 15, a full 40 years before I was

diagnosed with CMT. The lines rang true when I first read them and the

still have meaning to me every day.

Try and keep depressive thoughts away. People around you will offer

enough sympathy to gag you. You need not feel sorry for yourself.

Life is what it is. Life is life.

--Larry

[Guest guest]

Selfish Genome/Gene,

Actually, if I can piggy-back on to Larry's advice, which was

splendid (I loved the Veeck as in Wreck stuff), I got my first set of

AFOs, the plastic, ugly, white kind, almost 2 years ago, long after

I needed them. The orthotist who fitted them commented that

immediately my gate was " near normal. "

I know we are all different, a phrase repeated on this list often, but for some,

AFOs can give a splendid appearance of being not so different from everyone

else, can cut down on the unkind stairs from others, and our own

self-consciousness that comes from struggling to get across a room or to keep up

with friends who walk too fast for us.

I wouldn't leave the house without my AFOs; they have changed my life in a

positive way. Now I wear them on hot summer days with my shorts so they are in

full view. I put contrasting colored socks on so my white AFOs really stand out.

Who dares to comment? I think my friends and loved ones are quite happy for me,

now that I can navigate more easily. Hope this helps, Gene.

Sherry