AFOs

[Guest guest]

Hi Reema,

I have had AFO braces for one and a half years. It has really

helped me with my stability and ability to keep working. I went

to a foot and ankle specialist that wrote a prescription for the

braces. He has many people with this condition. I also have a

great neurologist that has been very helpful. I hope that you

find a doctor that can get these braces for you.

Connie

Pburg, Oh

[Guest guest]

What I have found to work for cold feet and legs is expedition weight

long underwear from REI (we have a local store and they are also

online). The material wicks away moisture and they are light weight.

Black color. Only need to wash them, they come out of the machine

almost dry, just hang it up to air out and its ready to wear.

You may need one size larger pants to accomodate an extra layer. I

wear them over the AFO's with over the calf socks and insulated shoes

and boots. I have a pair that came from a hunting/outdoors type store

that do not have the access front for the restroom, the REI ones do.

So there are ones for both male and female. I am a 38 year old male.

I need clothes heavy enough that would make a eskimo say its too hot.

HAHA

PS I have the stork legs with little circulation from mid thigh down,

so heat is not a problem.

[Guest guest]

Hi Bob and Connie

It's " Buckeye " Jim, (I had to go to that because there

are so many Jims)

I haven't solved the " hot " thing yet either so I'm

also open to suggestions. One possible cure I'm told

is using double upright type braces, also work better

in the winter with boots. (I'm sort of the " Wilderness

Willie " type). I've had AFOs for 6 months now, work

great, 'cept for bein' hot and unable to wear boots in

inclement weather. Both of you being in Ohio, I must

remind you that the Ohio Support group meets in

Greenville Ohio in the Church of the Brethren this

Thursday at 6:00 PM, I don't think thats far from

burg. Anyway your welcome if it " aint " too

far. Also the Big Orange shoe shop here in West

Liberty has long socks which could be of intrest to

people with our needs, sorry, no silk long johns

though! Get back if you are intrested in the meeting,

we have a guest Doctor this month who is going to

discuss our orthopedic needs, if I heard right.

Jim Nash

West Liberty, Ohio (Logan Co.)

[Guest guest]

-Bob the hunting socks is a good idea. For the heat. I used to powder

my legs and they stayed dry. And more comfortable. However, I don't

need to do this anymore. I had both ankles fused. the right one with

two scres, and the left one with 6 screws and a 10in rod. No more

braces. I can wear any shoe I want. I even bought dress boots this

year. But, remember this is a last resort. My ankles were really

broken down. But, it is a choice.

Martha

[Guest guest]

I have had my AFOs a year now. I knew the minute I put them on

that they changed my life. My orthotist gave me an excellent

fit. Yes, they did feel a little weird at first, but how nice

it was to finally give up my cane! My AFOs are solid molded

plastic which fit into my shoes (1 1/2 sizes bigger than my

usual size),and go up the back of my leg to about 4 inches

below my knee. An attached velcro strap wraps around the

front of my leg and is tightened for comfort in the front..

I can't imagine wearing them with a heel, let alone walking in

heels ever again! I think that the fit of the shoe is every bit

as important as the fit of the AFO. I think if your toes hurt,

your shoes are probably too small or too narrow, or a

combination of both. I went to a good shoe store and got fitted

by someone who is used to dealing with orthotics, etc. I have

a white pair of New Balance and a black pair of Reeboks,

neither of which were cheap, but getting a good fit was wworth it. I, too had

trouble getting my foot with

the brace on it into the shoe, so I put the braces in first and slip my feet

into them as a unit. One problem I did have was that the hard

plastic really made the bottom of my feet hurt. So my husband

removed the insoles from my shoes, and cut them down to fit

inside the brace. I then took them back to the orthotist for

review, and he permanently glued the insoles into the brace.

They are very comfortable now, but if I wear them all day, my

legs do ache. So I try to limit my wearing time, and exercise

my legs without them on whenever I can, to help keep my muscles

from atrophy. The only thing the AFOs have not really helped

is my balance when I'm just standing and not walking. I still

have to lean on someone or something. I think that for the most

part, the AFOs do what they're supposed to do, especially

protect me from falling. The bottom line is that you must have

a good fit, both shoes and AFOs, or they'll never work the way

they're supposed to.

[Guest guest]

In a message dated 5/31/2003 9:39:54 AM Pacific Daylight Time,

tigerboy@... writes:

> My AFOs are solid molded

> plastic which fit into my shoes (1 1/2 sizes bigger than my

> usual size),and go up the back of my leg to about 4 inches

> below my knee. An attached velcro strap wraps around the

> front of my leg and is tightened for comfort in the front..

>

,

this maybe my problem. Mine go higher then 4 inches below my knee. I feel

like my leg is in a cast.

[Guest guest]

In a message dated 5/31/2003 9:54:03 AM Pacific Daylight Time,

jimnas2000@... writes:

> The feeling that your

> knees can't lock is probably normal as they are likely

> trying to keep you from hyperextending your knees,

> although they may have overdone it a bit.

Jim this is exactlly what is happening! I want to hyper flex and if I can't I

don't feel like I have any stability.

[Guest guest]

In a message dated 5/31/2003 9:54:03 AM Pacific Daylight Time,

jimnas2000@... writes:

> I think its easier getting used to two of them at once.

>

> Jim Nash in Ohio

Jim, Did your feel like casts? Do you hyperflex?

[Guest guest]

In a message dated 5/31/2003 9:54:03 AM Pacific Daylight Time,

jimnas2000@... writes:

> I was told at the CMT clinic

> that they learned in their gait lab that CMT persons

> need the big heel for balance.

Jim,

What do you mean a big heel? A wide heel or a higher built up heel?

[Guest guest]

and all,

Like your husband, my orthotist put a soft 'instep' kind of

thing inside the hard plastic of my AFOs. I think it softens

things up a lot. Your husband might have a second career as

an orthotist!

Danita

[Guest guest]

,

I hyperextend my right knee some without a brace, mine

go up all they way to the chondyles and are a bit

restrictive, makes it tough getting under cars. Can't

say that they fell like casts though, (actually quite

a comfortable stable feeling. Right leg seems a bit

weak, if I misjudge distance to the floor I sometimes

don't get the knee straight and look somewhat

stupid.LOL

Jim Nash in Ohio

[Guest guest]

, (should have read this post before responding to the

first.) The big heel I refer to is a wide DEAD FLAT heel, is

supposed to help with balance.

Jim Nash

[Guest guest]

In a message dated 6/2/2003 1:57:54 PM Pacific Daylight Time,

jimnas2000@... writes:

> if I misjudge distance to the floor I sometimes

> don't get the knee straight and look somewhat

> stupid.LOL

>

> Jim Nash in Ohio

Oh Jim ,You are to smart to ever look stupid.

[Guest guest]

The bottom line on AFOs is WHEN YOU START FALLING, YOU WILL BE

GLAD YOU HAVE THEM.

Joan

[Guest guest]

Somehow I am getting an 'error " message when I try to send mail from my new

address to the CMT group. So, if this appears 3 times please ignore two of

them.

AFOs keep your feet up to prevent foot drop.  Foot drop makes

you trip on your own feet. I fell once 9 years ago on the

pavement outside my house.  I hurt my knee.  I made an

appointment for AFOs and haven't fallen since.  They

are expertly engineered, molded to your foot and leg shape, and

I don't understand the exact mechanics of them but they really

do help.  They are much better than the clunky metal braces that

FDR used.

 

I recently got a new pair and went to physical therapy for a

month.  The PT said she would show me how to get up after falling.

Everyone in the place stopped to watch the big show.  But I

took off the AFOs, scooted on the floor to a chair, asked

someone to hold the chair, and got up to much applause.

 

Also, I use to take them off for driving.  But now I drive

wearing them.  The trick is to find the exact seat location so

there is the correct distance between wheel, pedals, and you. 

However, I don't drive to places where I have to

merge into traffic or up steep hills.  It is difficult to get

good acceleration.  Well, this can be practiced in an empty

parking lot.

 

Hope this is helpful.  I don't usually write a lot.  I buy my

shoes from the place that makes my AFOs  

My mother, Granny Bea,  92, also CMT, just went into renal

failure last month.  She goes to dialysis 3 times a week and

is very unhappy about life.

 

Joan

[Guest guest]

Hi Joan and everybody, Its " Buckeye " Jim;

I'm just back from Toledo where I had one of my AFOs

repaired at -Fillipus. Pulled a " D " ring out of

the donning strap, it made putting it on a real pain

but not really any difference once it was on. Although

my back started getting ouchy and I think its related.

Mine are hinged with a " Klenzak " joint so I don't have

the problems getting up those of you in fixed ones do,

although its a little awkward. I don't think the hinge

hurts lateral stability at all but those with a severe

footdrop probably need a fixed brace or at least the

motion limited somewhat more than mine. I still have

good calf muscles, slight weakness in dorsi flexion

and little ankle stability, so the hinged AFOs will

keep me from losing my calf muscles by allowing me to

use them. My AFOs also have a spring action to assist

me in dorsi-flexion. Driving is not too challenging

with the hinges although seat position is critical and

I must be careful not to catch my foot under the

pedals, if it becomes a problem I will get hand

controls.

Don't be too critical of the double uprights type

braces, newer materials have reduced their weight and

size and they are not nearly as hot as having your

legs wrapped in polypropylene. Double helix types and

" Townsend " types (they are like a cross between double

uprights and AFOs, made of carbon fiber)are good,

comfy but very expensive! I wish I had given more

consideration to double uprights (What price, vanity?)

as I suffer from the heat and can't wear boots in the

winter. ( I am very active and work outdoors, and have

a reputation for the ability to " break an anvil " .

Another person with CMT has helped convice me of the

merits of double uprights braces, as well as an old

school mate and polio survivor who started out with

the old clunky metal KAFO, went modern with plastic,

and has now returned to the newer generation double

uprights KAFO.

We have a Lee's shoes in Bellefountain too, and

Connie. Theres a lot more of us in Ohio than I

thought.

'nuff rambling, but after all, look at my name!

BuckeyeJim Nash