Re: what kind of AFOs work best

[Guest guest]

Hi,

Does anybody have any idea of what AFOs work best. I have done a little

research on the Net, and I am trying to find out what worked for certain

conditions.

[Guest guest]

,

Everyone is different. That's why your orthotist should evaluate you

and your needs. Some people can wear Toe-Offs and like them, for

others they don't work and the more traditional plastic ones work

better. We had some discussion a few years ago about the Brittish

SAFOs and also about Helios. And then some people still prefer a metal

bracing system.

Tell your orthotist everything about how you walk, how you feel, etc.,

let him see you walk, measure you, recommend AFOs that would benefit

you, evaluate them all, pros/cons with your orthotist. Quality AFOs

can really influence quality of life.

~ Gretchen

[Guest guest]

Hi and Thank You for your good information,

Well that is why I was asking the group about different kinds of AFOs and what

they have found. My sister was recently evaluated at the Wayne State clinic,

and when she was done, they told her she would now get a consultation with a

staff orthotist, for leg bracing.

Unfortunately this orthotist did not evaluate her very well, other than the

obvious of a dropfoot. He took out a pair of braces out of a box, and had her

try them on. She said that she could hardly walk in them, and it did nothing to

help her balance, and they were extremely uncomfortable. She got the feeling

that this orthotist just wanted to quickly fit her, and move on to the next

sale.

I was looking for a little feedback on what worked for other people, before I

meet with my local orthotist. I am also looking for the benefit of my sister as

well, as she has not purchased braces as of yet.

[Guest guest]

Hi ,

I have had my AFOs for 14 years or longer.When I got mine they took

a cast impression of my foot and leg.Cut the cast off and made my

AFOs from that.I have never had any problem with them. I even had a

pair made that way so I could wear 2 inch high shoes and have never

had any problem with then either. That way they get your feet right

from the start and you should be ok with the fit.

Take care

Sherry

[Guest guest]

My first pair were awful and they don't 'break in' like shoes do. My fourth pair

are the best. They are hinged at the ankle to counterbalance drop foot and they

are shaped on the bottom to relieve the excess pressure on the ball of my foot.

A guy named Christianson at UC med center Parnassus Street in

San Francisco made them.

My first three pairs were made by the Hanger Company in SF and Oakland

California. They cut corners making them and as a result had to be reshaped

numerous times to address the ulcers that they induced on both feet.

It was a lesson in advocating for myself. A well fitting pair of braces are

life changing.

Good health,

Chris

[Guest guest]

I have type 2 CMT and have worn AFOs approximately 30 years. My

experience has been both good and bad. I believe that success of

custom fitted AFOs is dependent on the technician who builds them and

his ability to relieve painful areas.

About 10 years ago I was treated for lymphoma and the chemo aggravated the CMT

neuropathy and this made wearing AFOs almost impossible. I am aware that there

has been much discussion about foregoing some chemo due to the pain we suffer

with our neuropathy but, in my case I must disagree, for when you consider the

alternative to living with neuropathy, then taking the chemo is a logical

choice.

I am able to walk with a cane without my AFOs and have done that a

lot when the pain was severe. Recently, I was prescribed a new AFO.

the Toe-OFF. It is not a fitted AFO but is purchased according to shoe size.

There is no touching of the skin by a hard brace and it is padded where it must

touch the leg. I wear mine with knee high sock which I turn over at the top to

keep them from slipping down. The major difference in the Toe-OFF and a custom

fitted AFO is that the Toe-OFF makes contact with the front of the leg (the

shin) while the fitted contacts the back of the leg. I have found this AFO to

give me relief from the pain of neuropathy.

Toe-OFF has a web site: http://www.allardusa.com/

Basil

[Guest guest]

Hi Basil!

I tried the ToeOff brace. It seemed to me that the ToeOff is mostly for

dropfoot. It didn't give me the support I needed. I can't walk very well without

my AFOs. Depending on the activity I'm doing, I also use a cane for balance.

That's great that the ToeOff works for you!

JoAnn

[Guest guest]

Hi ,

Very happy to hear that Adam's visit to Swiss Balance was a good

one. Rudy and Stefan really know what they're doing. I too asked

Stefan similiar questions about AFOs and atrophy and a few other

things.

I think back to being 21, my neurologist sent me to an MDA clinic at

UCLA, specifically to see another neurologist about my *tremors*,

not to get fitted with AFOs.

Instead I was completely ignored by the clinic docs, and at about 5

minutes to 12, after a 3 hour wait, the orthotist came out into the

waiting room and started measuring me for AFOs. Cookie cutter-

thinking. I knew I wasn't there for that, and didn't need AFOs. It

scares me to think that I might have worn AFOs all these years and

had muscle atrophy result. Not everyone with CMT needs AFOs or will

ever need them.

Thank God for my intuition, moxie, and resistance on the AFO issue,

plus no drop feet. Meanwhile I keep building my muscles and working

out to keep my legs and feet strong.

I hope you and Adam got to the Pier and had some fun after the stop

at Swiss Balance. I also hope some of those links to schools I sent

was helpful. Adam's very clever, , he might just grow up to be

a CMT-Biotech researcher. We need more researchers who have CMT in all areas,

not just genetics, for persons with CMT to truly be treated and arrested once

and for all.

~ Gretchen

[Guest guest]

<I hope you and Adam got to the Pier and had some fun after the stop

at Swiss Balance.>

Oh we did better then that. We went to the Fashion district in Los Angeles. Adam

can't wait to go back and buy more chips and hot sauce off one of the food

carts. lol