AFOs denial

[Guest guest]

Elaine:

In looking back if I'd had the AFOs, no triple arthodesis at 12; however, it was

put to me by my parents to make the decision of did I want to walk with braces

in my life's future years or did I want to not use braces (I don't think plastic

AFOs were available in the early 60s so it was those old saddle oxfords or

granny black hard shoes with the thick heels where the bolts fitted in) and have

a surgery that would act like braces making my ankles tight and fused. At that

age - heavens, no, no braces!

They told me there was a surgery that would hold my foot up straight and I'd not

fall as much or turn my ankles, etc., and that I'd never be able to wear high

heels. (High heels were a big thing to my Mom as she was feminine and dressy,

etc.) So, I chose to have surgery.

The surgery of fusing my ankles didn't stop the wasting of my calves. I walked

by using my hip muscles, thigh and knees. I had the " Oprah " rounded hips and

thigh shape and much smaller legs, straightly shaped and smaller.

I was good to go for 27 yrs. Breaking my left leg at 39, gaining weight over

the years from 120 to about 175, progression, I needed more support. Called MDA

and they were there to the rescue. You know my parents never told me I had

Muscular Dystrophy or Charcot-Marie-Tooth. They took me to see a girl that had

the surgery, too.

Actually, they wanted to see her walk, etc., and talk to her parents. Our next

door neighbor was an xray technician at a orthopedic clinic and she told us of

this patient my age. Over the years we found out that she almost got fired for

revealing that to my parents. Our neighbor was a single parent as her husband

was deceased so losing her job would have been terrible.

I must have been in fog or not really smart or blocked it out or my parents

didn't dwell on it and included fun in with things that I don't every remember

" details " . I contribute my lack of knowledge to my walking problem (being a

genetic defect, progressive disease, MDA stuff) to my putting it completely out

of my mind.

By not knowing details, I was surgically corrected to walk better. Period. So

I went on with my life. No depression as everyone has a funny walk, just look

around. I just didn't really care I guess. It was when I was dating and the

guys would asked me if I wanted children as they wanted children, and then I

started asking questions about " my problem " . I was probably 25 or older.

I love children but having to work to pay my own way with a new car payment and

apartment rent and utilities and to be independent and how I felt after working

and sometimes an hour or two over and driving home, the fatigue. I always felt

I'd work as I was from a middle income family and both spouses worked.

So, I came to realize that I didn't have the physical strength to work, care for

a child and a husband. So, dating became easier to cull through the men that

wanted children, etc. and focus on ones older.

There was one guy that pushed me for answers. I went to genetics counseling,

too confusing so I just said why get in to all that, I wanted to travel to

romantic places, etc. but the husband was most important. I was lucky to find

my Prince who didn't want children and we married later in life at 33 and 40.

I'm getting too wordy here - back to AFOs. My AFOs were custom, clear molded

plastic held on by Velcro straps that lined the top of the AFO. I even

requested the 1 " wide Velcro. You know Velcro is great. You must keep it clear

of thread from your clothing, etc. and it will last. I wore pantyhose with them

during working hours and socks on the weekends.

They casted both of my feet and legs at the same appointment and asked me to

stand, bend my knees slightly and they used their hands to shape the plaster to

the shape of my leg and ankle. The plastic came all the way under my foot and

stopped leaving my toes free.

They were not the same width in the back, and the more support you need depends

on how much they wrap around the back of the calf. Since I'd broken by left

leg, the plastic was thicker and wrapped around more for support. The trick to

the custom AFOs is the cut out at the ankle, the degree of movement of the foot.

If was was hard and straight, you'd be walking on stilts.

The cutout there is crucial as to your overall success. Also, wore the Ked

Champion Leather s - they're flat with no raised heel. The shoes you wear

are critical - the rise. Funny, I couldn't take much of a rise - like a wedge

or my knees won't take it. So, I have to stay level with the floor (well, when

I was walking). Yes, I believe I put extra stress on my knees but I also kept

gaining weight.

Kept falling and breaking my big toe on my right foot and small bones across

instep. So, added forearm crutches in 1991. In 1993 I was put into a scooter.

The new Helios (look into those when the time comes) braces would have been the

way to go without the triple arthodesis. I believe if I had of had those in the

beginning it might have been different, but who knows. Women can wear pantsuits

now, where in the 60s we wore dresses.

So, I feel the surgery got me through my critical young years where looks were

of top most importance and as I got older and progressed into the diagnosis, it

didn't matter all I wanted was support to carry on with the different phases of

life in general.

I believe you need to be fitted for both legs and ankle AFOs and you won't

believe how much better you'll walk. However, there is a balance problem and

you will have to learn to touch a wall, the back of a chair, a person's arm,

corner of a wall, or counter top at first, until your knees, thighs, hips, lower

back muscles all adapt. Also, going up or down a ramp is difficult, should

avoid.

I probably would go with only one AFO if you can (I don't know if that is the

protocol, etc.) and KEEP UP with activities as usual. Do ALL as you have been

doing, stay as active as you want to be, the AFO will only help support/brace in

up position and keep you from tripping, etc. Your body will adjust and other

muscles will kick in gear and may strengthen, who knows, but your body will be

your judge, when to look for help - when it's time for support.

You will know. If you give in too soon, it's hard to get it back. Keep

fighting. Hope this helps.

Donna B.