Re: AFO helps or hurts

[Guest guest]

They will cause more weakness.

[Guest guest]

Hi Angie,

I'm not sure about muscle loss. I go without braces a couple of hours a day at

home just in case.

The braces that have hinges at the ankle or are flexible might be easier to

drive in.

Many people on this list participate in water exercise which is a gentle way to

maintain muscle mass.

When I did water running it also helped with issues of fatigue.

take care,

Chris

[Guest guest]

It sounds like you may have AFOs without ankle joints. Those are hard

to drive in and very hard to go down stairs in. I'd ask the dr if you

could get AFOs with ankle joints. They will be much more comfortable

and much easier to drive in. Driving with solid AFOs is very hard,

not sure it's a good idea. Just ask your dr if you can have some

hinged ones. Also are your AFOs the new shorter length or are they up

almost to your knees?

My orthotist has found that the new shorter ones work just as well and are much

easier to wear. Hope this helps.

Bob

[Guest guest]

My husband didn't get AFOs when the doctor first recommended them because he was

still walking. He now feels this might have been a mistake as his ankles and

feet are much more out of line and painful. That said, he still doesn't like to

wear them because putting them on is a hassle. His walking without them

requires orthotics and a cane, and he is very unsteady. He is on his second set

of AFOs, the old-fashioned metal kind with attached shoes and his orthotics,

which are much more comfortable than the old plastic hinged ones.

Elinor

************************************** See what's new at http://www.aol.com

[Guest guest]

Bob, My AFOs are tall and hinged. They do not let me point my toe

down. They just allow me to walk somewhat normal. I think I just have

to take the time to use them. It is a different feeling, I guess so

it messes with me.

Thanks,

Angie

[Guest guest]

Elinor,

My feet hurt all the time so I hope wearing them would allow

them to rest. Maybe my feet are just too weak so I stress them out

when I do not wear my AFOs. After wearing them about 3-4 hours I have

to get out of them. They are start hurting. BUT, my knees hurt the

next day after I wear them. Are they too much for my knees or are

they just working my muscles around my knee?

Angie

[Guest guest]

I disagree with Bob. I've had solid plastic AFOs that go up almost all the way

to my knees for over 5 years. I have absolutely no problem driving or going

down steps. You just have to teach yourself how to do it; kind of like learning

how to live with other aspects of your disease.

K.

[Guest guest]

,

I don't necessarily believe that AFOs cause more weakness, and I think it's

unfair to make such a strong statement. I do know that if I had not had my AFOs

for the past 5 years, I'd be in a wheelchair by now. They, along with my own

determination, have kept me up and walking. So even if they did make my legs a

little weaker, I'd certainly rather be moving than sitting.

K.

[Guest guest]

Angie,

what type of AFO's do you have. If they are hurting your knees, maybe you should

have a gait analysis to make sure you are not damaging your knees or that they

are not hyperexending too much.

Jackie

[Guest guest]

My physical therapist said that they can cause you to be weaker that

of you didn't have them. But if you need them, you need them. And you

should get them. Devices like these can change your quality of life

for the better. I just got some custom orthotics (not AFOs - I don't

need them yet) and they have changed my life dramatically. I limp less

and have much less pain in my feet and my knees. Wish I had done this

sooner.

[Guest guest]

AFOs cause atrophy. Atrophy = weakness.. AFOs prevent you from using your

healthy muscles. The fusion surgery I had also prevents me from using healthy

muscle. = Atrophy.

My son lost all his muscle when he went into AFOs. His leg took on the shape of

an AFO. Of course when he went into AFOs he needed them. I think most of his

damage was done by having an overly aggressive brace. Something less rigid to

start with would have been better.

In my opinion people should stay out of AFOs as long as possible. I have a

little ankle brace that I wear that even causes some weakness. Of course other

options should be exhausted before going into a brace.

My son can not walk without his braces. I need my ankle brace to walk distances.

I prefer never to walk a distance and of course if I had AFOs I would be able to

walk further with less energy and weakness. So I understand why AFOs are

important but they do make your feet and legs weaker.

[Guest guest]

,

I agree completely that AFOs can make your legs weaker. That is why I try to do

so much at home re: exercise, etc., vs. outside. But, when outside I have to use

my braces for distances. Falling is painful enough. I think the embarrasement

that accompanies it is almost as bad. Also, the fact that when I walk in front

of people my foot pulls in shows that the strong inward muscles are working and

not the everter muscles pulling the foot ut. People are so rude about your

disability like it's your fault that your knee might be hurting or something.

They have no idea how much pain you're in. Anyway, the nervousness of walking in

front of others makes my feet pull in all the more b/c the strong muscles want

to react to typical nerves and so my feet turn under and I fall. Well, I will

write more later. Have to go do laundry.

Dawn

[Guest guest]

-

THANK YOU for this post! I thought I was the only person on the

face of the planet who understood that AFOs totally reduce muscle

strength in some patients. Not only that, but AFOs can cause

severe skin irritation and other problems for patients who have

severe eczema or psoriasis. (My son has horrible psoriasis)

Our orthopedist and neurologist both agreed that AFOs were not

needed for my son at this time, but did support the use of a

wheelchair in between classes on our large school campus - only to

keep his stamina up and help him not become so exhausted as the day

goes on. He then gets up and walks to his desk and is active in the

classrooms and at home. All of the approaches to patients with CMT

have to be personalized to the patient.

Great post!

[Guest guest]

AFOs do not totally reduce muscle strength in CMT patients. They

allow them to walk more normally and use their muscles more

efficiently. If you didn't have muscle strength you couldn't use AFOs to walk.

Relying on a wheelchair will reduce muscle strength. That is a given.

AFOs can be made so there is less skin contact which would

help someone who has skin problems. I hated the older full skin

contact AFOs as they were hot and sticky esp in hot weather. The

traditional metal braces have even less skin contact and would be good for

patients with skin conditions.

My newer kevlar and graphite AFOs are made much like a metal brace with the back

and sides cut out like the uprights on metal braces. These are not hot and have

very little skin contact which would be beneficial for CMT patients with skin

conditions.

Bob

[Guest guest]

I feel a big difference just wearing the little muller brace that I have. I can

see a difference if I wear it a week at a time.

[Guest guest]

To be honest, I had the opposite experience. I wore

AFOs for like 15 years straight (from 21 to 36). Last

year, I decided to go without them. I found the

lightest shoes I could find (a type of tsubos) and

just don't wear them. I DO walk with a limp especially

in my left leg but I try to walk as a little as little

as possible.

Believe it or not, I actually started taking salsa

dancing classes. It's hard and I'm not very good (and

feel it the next day) but it's fun. Oh well, I

probably do need them but find I can live without

them.

-

[Guest guest]

I've got a friend with 3 kids. They all have cmt and so does dad. All

of the kids wore afo's from early on till they were around 14 or 15

and then went without them. All still need them but they get by

without them and do pretty good. The oldest is a girl so you know how

teenage girls can be. I am sure they all will eventually be back in

afo's but for now my friend is wearing his and lets them know they can

get some when they want them. Their dr still wants them to have them

so they have Rx's for them. They all wore afo's for around 8 or 9

years and got the benefit of wearing them. Obviously their muscles

didn't shrink too much. They are actually doing pretty much the same

thing their dad did. He wore afo's and kafo's till he was in high

school and then went without them. He went back into afo's in his

early 30's. He probably needed them sooner but didn't get them till

his oldest kid was Rx'd.Just goes to show as my orthotist says, afo's

are just tools to help you walk better.

--- In , jonathan twaddell <swallowtail98@...>

wrote:

>

> To be honest, I had the opposite experience. I wore

> AFOs for like 15 years straight (from 21 to 36). Last

> year, I decided to go without them. I found the

> lightest shoes I could find (a type of tsubos) and

> just don't wear them. I DO walk with a limp especially

> in my left leg but I try to walk as a little as little

> as possible.

>

> Believe it or not, I actually started taking salsa

> dancing classes. It's hard and I'm not very good (and

> feel it the next day) but it's fun. Oh well, I

> probably do need them but find I can live without

> them.

>

> -

>