Walk-Ons

[Guest guest]

Hi Jimmy:

Sorry it took me so long to get back to you, I have been out of town. I will

try to answer your questions. I can remember having

symptons of CMT as far back as age 8 or 9, but everyone just thought

I was clumsy. I didn't start requiring assistance to walk until I

was about 30.

Then I started falling and at first started with a cane, progressed to solid

AFOs, then took a really bad fall (wasn't wearing the AFO!) had an unsuccessful

fusion which resulted in trying to use hinged Townsend AFOs.

After second successful fusion I went to the Toe-Off which I kept cracking to

finally the Walk-On which I am loving so far.

As for my progression - I have no ability to manipulate either foot without

using my hands, ie: I can't slip my foot into a shoe unless I use my hand to

guide it in and then push on my toes to uncurl them. I can't flex my feet up or

point down and can only slightly move them inward - no ability to push them out.

Without an AFO I lift my leg that is not ankle-fused about 3-4 inches

to clear the floor. The fused ankle works as a built in AFO, LOL, so

I don't lift it at all, but rather have a little bit of a slap as the

foot comes forward. I have found that if I concentrate on my gait I

am able to force my foot to roll in a more normal pattern.

I have numbness from the knees down and flat-lined the last nerve conduction

test I took! I have no natural reflex from the knees down. I don't suffer much

pain related to this disease, only when the weather changes to cold. But I

think most of that is a result of the

titanium rod and screws in my leg.

The Walk-On brace seems to provide an even better lift than the Toe-Off did, and

I seem to have even more energy. I went to two seperate conferences this week

which required walking thru airports, walking from meeting to meeting and

sight-seeing. I felt as tho I have been set free! I walked with more

confidence and my energy was what I would think a healthy person must feel at

the end of the day. I was so elated I walked around smiling at everybody. I'm

sure they thought I was looney.

Since getting the Walk-On, I have been walking every evening and have

worked up to a little over a mile. Before the Walk-On or even the

Toe_off I would get too tired to walk around the house in a more

conventional AFO. I also think my gait may be getting better when I

take the AFO off. It is almost like my brain is sending better

signals to my legs/ankles to remember to roll my foot. (Gretchen, is

that at all possible??)

As for my balance, I need to hold onto the wall if I'm not wearing my brace and

in the shower if I need to close my eyes I have to put a hand on the wall.

I guess I have a hard time evaluating myself because I am so happy to

just be walking again on any level. I spent over two years in a

wheelchair and there was a time when the doctors didn't have a lot of

hope that I would ever be ambulatory again. Thru alot of prayer and

a great doctor, I am independent again and loving every minute of

it. So, to me life is good!

I would recommend to anyone who is considering the Walk-On that you talk to your

orthotist and ask him to let you " test drive " one around his office for about 15

minutes. Mine had to be cut down a little in the length once I decided I wanted

it, but it was a close enough fit to just try for a few minutes. If they let

you do that, walk up and down the halls ask if you can walk outside the building

to get a feel for different surfaces, sit in it for awhile and basically let

your body adjust to it for a little while because it does change your gait

slightly and that may feel odd at first. Anyway, hope I've answered all your

questions and good luck with your decisions.