New AFOs

[Guest guest]

I've introduced myself before, but to the new people: I'm a 30 year ago

Man, Married 7 years (as of Aug 31st), and have " mild CMT " type ??? (X

linked, maybe, Type1 probably- but not one of the ones you can currently

test for in blood). I have classic " pes cavus " feet with contractures,

without any hand involvement. I have areflexia (no reflexes), Hyper

sensitivity to pain and heat/cold. My ankles turn out, and my toes are

all bent. I was diagnosed at 16 but only just recently (this year) I got

help from MDA. I have worked most of my life, currently I'm changing

careers to be a Medical Assistant. My goal is to keep working, and keep

moving for as long as possible.

I got my AFOs last week. They are inarticulated (no hinges), Black, and

have a different shape than what I've seen in published images of

braces. The difference is that the the top of the brace is open at the

back, allowing my calves free movement. The top front of the braces are

curved and it connects, which allows me to lean into them for added

support. Like I said, I think they're fairly unique -I can post photos

if anyone's interested. Without the braces, I wear a size 7 wide or 8

1/2 tennis shoe. With them, I wear size 12 wide (New Balance

Crosstraining), which is closer to the size I really need as I'm 6 feet

tall (my toes never fill a shoe, but I need extra room or they're

squished). I stand really straight in them, and can actually stand still

for once. However, it's been hard adjusting to them. When I put them on,

it's like I'm prepping for a spacewalk or something. I have already been

back once, and had to have them adjusted, padding added in places, etc.

It feels weird to have something over my ankles, and I hope I can get

used to it. I don't even like high top shoes, because they rub my bony

ankles that stick out on the outsides. I actually haven't worn them all

this long weekend, and really need to get going again.

I called my orthotist and he thinks that I need more adjustments to the

braces, and wants to replace the pressure pad (holds my leg/ankle

straight) in the left side of my left brace with a smaller pad, as well

as padding both ankles. He's worked with lots of other CMT patients, and

says that it's common to have to adjust and readjust in order to keep

the ankles from rolling and fix problem areas. It sure seems like a lot

of work for me but I really need to count my blessings. I was joking

with him about bionic feet and he said that some doctors actually

recommend amputation to CMT patients! My jaw dropped! I mean, my feet

aren't much, but they're not THAT BAD!! He lost his feet and most of his

legs in an accident years ago, and says AFOs beat what he has to go

through everyday. I believe it. Man, I found new love for my feet. It

really made me want to get this right.

-

PS I also got my first disabled placard in the mail (finally, after 3

months or so). So I guess I'm officially in the club, or something. Ha

Ha.