Braces

[Guest guest]

I found Toe Offs and Walk Ons on the web? I have asked about them and I was told

they wouldn't work for me. I wonder why? They made me some metal and plastic too

(heavy braces) I can't ware them I broke out from the plastic..My shoe size is a

one and half and the gave me a five and half..There is no way I can wear them!

The cost $3,000 plus!

Geri

[Guest guest]

,

Be sure to check our Archived posts for all the different braces, search by

AFOs, Toe Offs, Walk Ons, Helios, SAFOs, KAFOs, DAFOs etc. You will no doubt

find links in some of those posts, and you might want to check our Links section

as well.

Gretchen

[Guest guest]

Geri,

Please look back at my post -

In a nut shell I have improved energy(tons) and I am no longer as limited on

my choices regarding walking activities. I am able to fulfill my business

activities that require me to walk at golf or go to events at stadiums. I

am no longer so fatigued by Saturday that I am in bed all weekend from my

week. Normal pacing is all that is required to feel great most of the time.

I don't wear my AFOs all the time. I am back in my Monroe's work shoes (I

wear suits to work) during most of the week. I am in my AFOs during the

weekends and times of high activities. I believe the AFOs have just enough

assist to lower my energy out put when walking to relieve that type of

fatigue. I had hoped that they would help me with my unstable si joint and

tight IT Band, hip flexors, bursitis, etc. but I don't think they have helped

restore a " normal gait " so as to be to heal my muscular inbalance of my lower

body.

I got my AFOs last April 2008 they were the Toe Off - I believe they were right

off the shelf standard- I broke them within 4-6mths. My orthotis told me if you

break them you are not a canidite for them. They were under warrently and he

replaced them and got me a pair of Walk on's again mine were fresh from the

manufacturer -standard off the shelf. Walk on's are way cute! But took some

getting use to!

I have been on a 3-4yr rehabilitative recovery program that I have designed. I

was near disabled back in the summer of 2005 due to my unstable SI joint and

lack of activity. My AFOs have been a wonderful addition to my life. I love

when people ask me about them.... Most times they tell me how athelic I look and

where am I going to play soccer then I tell them (tongue in cheek how strong and

athletic I am). Other times I am able to simplely share that I have an

inherited nueromusclur diease that causes me to have trouble

lifting my feet. And I get to plug CMT.

I am 47 years old and I find everyone has something and getting to talk a little

bit about the braces makes everyone feel better.

Hope this helps!

Kim

[Guest guest]

,

Both Toe Offs and Walk On's have extensive web sites!!! Lots and Lots of info!

They make dress wearing a past outfit but they are comfortable and only widen my

life. Since they are standard off the shelf product they are easy too- easlier

then get orthdotics.

I will say this the toe offs web site show a women running a race in them! The

Walk On 's show an attractive women walking so sexy in them.

My orthdotics guy said he really wished they didn't show people running races in

them that might break them.

Good luck

Kim

>

[Guest guest]

I don't know, some orthotists are just hung up on making thick white plastic

braces thinking everyone needs the extra strength not ever looking at the new

materials like graphite and kevlar. I

I love my graphite and kevlar AFOs. They are stronger, thinner, and easier to

wear. What more could you want. Also my orthotist has cut the footplate back.

That makes getting shoes so much easier. Also he is making them shorter now too.

He said the latest research shows that the shorter ones are just as effective

for CMT. His mantra is " The least brace possible is the best brace " .

Some orthotists are making their afos way too thick at the ankles or not using

ankle joints when there are great ones available. The Gillete joint is a great

one for CMT. I feel some of the problems come from today's orthotists usually

not wearing braces themselves.

It seemed like when I was a kid there was at least one guy in every brace shop

who wore braces too. That way they would know how a brace actually felt and what

works and what doesn't. Hope this helps.

>

>

[Guest guest]

,

It's a great idea to let orthotists wear braces themselves! They could easily

try the off-the-shelf variants, for let's say a whole day! I will suggest this

to my orthotist, although she is very good already!

I also agree that the less brace, the better. For me the Helios braces were too

much. Toe-Offs were not enough, but my Blue Rockers are perfect for me! For me

it is essential that the braces go all the way to my knees. That is because I

have got good sense of position only there, not further down. With braces that

go up to my knees, I get the position of my feet, because the braces also go

under my feet. It is hard to explain, but the result is that I have ok balance

with the braces, because I get a better positioning of my legs through the brace

construction.

I don't need braces to support my ankles, and that is what I thought braces were

for, before. Now I know the are also good at telling me were my feet are, and

thus walking is easier. They also lift my feet, which means that I don't have to

lift my knees too high to avoid tripping. This is energy saving.

I have no idea how people can run with braces! The Blue Rockers (but also

Toe-Offs) are quite rigid under the foot. For running the foot must be bent, I

think. Or am I wrong?

Beata 

[Guest guest]

Hi & group,

Could you email your orthotist info to me - if they are not local I might call

them for a referral to someone who is. It sounds like you have found a good

one.

I am looking for an orthotist who makes the shorter version of the afo in a

thinner material such as kevlar or graphite. I tried some graphite AFOs but

didn't want the traditional height. I like them to hit just below the calf

(this worked best for me with the plastic ones).

Also, can they cast a custom insole in the thinner material? I currently have

plastic with arch support and a round heal cup. The insole is very cumbersome

and hot.

Thanks for all of your posts on AFOs.

Chris

>

>

[Guest guest]

Beata,

Curious about your braces. I got the helios 2 years ago and have yet to wear

them or able to take more than 5 steps in them. In the meantime, i am wearing a

very old broken pair of braces. I had the toe-offs before and although they were

great at the beginning, i ended up snapping them at the ankle joint because of

the pressure i put on those joints when i get up and down from the floor. I have

also had the white plastic ones with the ankle joints and broke those too.

I have very weak hips in addition to weak quads which was why it was so hard

with Mitch's braces. Do these braces support the knees or keep you from

hyperextending the knees like Mitch's braces did? I am looking for less of a

brace than Mitch but a brace that will not only help my foot drop, but also

protect my knees.

Thanks

Jackie

 

[Guest guest]

Hi,

I have a soft plastic/rubber cast insole. It is great,not hot at all and very

comfortable. (Walking on clouds-feeling). It was made for me by my orthotist in

Sweden. We tried the hard plastic version first which incapsulated my foot.

Hated it! Very warm and it held my foot to tight,so I had a lot of pain. My

rubber insoles are only under the foot. This is sufficient for me, because

the braces are supportive enough.

Beata 

>

>

[Guest guest]

Hi Jackie,

The Blue Rockers are almost the same as Toe-Offs, but they are more rigid. I

have had them for 6 months and I am very active, but I have not broken them yet!

You can't lean on to them like with the Helios braces, but they stop right below

the knee, so it feels as if you are leaning on them anyway. The balance improves

but they are not so rigid, (as Helios) so walking comes naturally, no need to

learn to walk as with the Helios. Blue rocker feels more like a very steady

boot, just put them on and walk! It feels and looks a bit like walking with MBT

shoes. You rock a bit when you walk! (That's probably where the name Blue rocker

came from, and they are blue too.) Also you need custom made  insoles and

probably special shoes. I have got black leather shoes with heals (4 cm) and

sandals. Both were ordered by my orthotist to fit my feet + braces. Both are

fantastic, both good looking (can I be more positive?).

The sandals are Otto Bock, the shoes a Norwegian brand (forgot the name.) I

really like my braces, insoles and shoes. I wear them all day, and I walk a lot

more now. I don't use any other aids. I walk with my son to school almost every

day and stand and chat on the schoolyard with other mums. I have never been able

to do that before, hated to stand and talk at the same time since I could do

that unsupported for maximally 30 seconds before I had my braces. I am generally

weaker in all my muscle groups, but I don't have any problems with my hips.

Hope it helped!

Beata

 

[Guest guest]

Dear Beata,

Thank you for sharing this information. I am interested in this soft rubbery

insole for use with AFOs. Could you please forward information on them. I am

in the USA, but perhaps a local orthotist could work with the manufacturer.

Thanks to everyone posting this info & thanks to Gretchen for maintaining this

list.

Chris

>

>

[Guest guest]

Hi

I will ask my orthotist about the insoles, and get back to you. They are made of

a grey plastic/rubber mass, I think that is what she said, but I will ask about

the brand too. They are really comfortable. I had insoles before and I never

liked them, because they were warm and hard, but the rubber insoles are soft and

keep cool during summer. I also have a cork heal attached to them on the bottom.

That makes them a bit higher. Cork is also a natural material, and they prevent

my feet from getting to hot.

Beata

>

[Guest guest]

Thanks Beata!

________________________________

From: Beata Boo <beataboo@...>

Sent: Thursday, October 1, 2009 4:02:27 AM

Subject: Re: braces

Hi

I will ask my orthotist about the insoles, and get back to you. They are made of

a grey plastic/rubber mass, I think that is what she said, but I will ask about

the brand too. They are really comfortable. I had insoles before and I never

liked them, because they were warm and hard, but the rubber insoles are soft and

keep cool during summer. I also have a cork heal attached to them on the bottom.

That makes them a bit higher. Cork is also a natural material, and they prevent

my feet from getting to hot.

Beata

>

[Guest guest]

Hi Kim,

I have a really tight lower body too. SI Joint, Hip flexors, periformis, IT

band. Interesting.

I feel the researchers I deal with are exploring a theory about CMTers using

their hips to walk / propel (as opposed to hamstrings / quads). This may

explain why...

Glad to hear that the braces help. I now wear a Push Aequi on both ankles for

exercise, to help alignment and imbalance. I am optimistic it will help me to

feel less fatigue. I don't know if I could fit them in my normal shoes, but the

Monroes are a good tip.

And thanks for reading my blog!

Donna

www.myfitnessyear.com

[Guest guest]

Hi, It is me again!

Met with a wonderful orthotist from Hangar orthotics today. She totally

understood my CMT and likes to " think outside of the box " She

told me that I have the PHD and she is going to help me with implementing,

instead of assuming what will be best for me. I finally feel like there is some

hope and some options in this never ending nightmare of bracing CMT!

We are looking at 3 options and we will try them out before I have

to commit.

The Premier KAFO from Townsend Design

The Blue Rockers

The Otto Bock E-mag

Has anyone tried out the Otto Bock E-Mag? It is a KAFO that has a remote control

that helps lock the knee and unlock it when you need to sit or stand. The Otto

rep is going to bring a demo for me to try.

The Townsend KAFO looks ok too, not as bulky as other braces and the hings at

the ankle and knee is adjustable so if there is further improvement or weakness,

we can make adjustments.

The Blue Rockers are going to be ordered in, but she will customize all of

these braces for me.

Looking for any feedback. My CMT is severe foot drop, mostly paralyzed quads and

weak hip flexors.

Jackie

[Guest guest]

Jackie,

I have metal braces and cant ware them..too heavy and cumbersome and I just hate

them!

Geri

[Guest guest]

Jackie,

A friend tried the Otto Bock E mag braces and didn't have much luck with them.

They were constantly broken or having issues. It sounds like a great idea but

there are still issues, plus they are pretty big at the knee joints. Have you

considered the traditional metal braces? The newer ones are lighter and easy to

wear. There is less skin contact than plastic braces so they are cooler to wear

in hot weather. Try them.

[Guest guest]

,

Thanks for the info! I have not tried metal braces. When I go back for the Blue

Rocker eval I will ask about them. I am weighing ALL of my choices before making

another bad decision!

Jackie

[Guest guest]

I am thankful that you listed the choices you have. I too am dealing with Hanger

for my son and we are in the process of ordering kiddie Gait blue rockers for

kids, but it looks like the Townsend design may actually be the answer we are

looking for. I wanted to find something low profile but with joints in the

ankle. Does anyone have experience with these? Do the joints cut down on the

support?

In His Most Merciful Name,

Ziegler

[Guest guest]

Has anyone else tried the Phatbraces? Mine are amazing for me.

Geoff in PHX http://phatbraces.com/

[Guest guest]

I just checked out the site. They look pretty cool. How bad is your dropped

foot? Both of my son's feet are dropped. Had you tried blue rockers b4 and found

these better?

In His Most Merciful Name,

Ziegler

Re: Braces

Has anyone else tried the Phatbraces? Mine are amazing for me.

Geoff in PHX http://phatbraces.com/

[Guest guest]

Both of my feet are also dropped and I have never tried Blue

Rockers,these are my second pair I have tried. My first AFOs had a hinged ankle

and they were terrible for me(hard to get on and uncomfy).I got both pair from

Hangar,the terrible hinged ones were at my request as I saw them in the Hangar

office and mentioned that I wanted to try a hinged AFO, he gave me what I wanted

not what I needed.

I'm no doc I have no clue what I really need.With my new Phatbraces I can move

my ankle a just enough to balance myself while standing and they have a bit of

spring when I walk.I am serious when I say I walk normal and stand balanced and

still.I also dont get so tired so fast when walking,also I a standind strait up

and I seem taller.I

wish we all could find AFOs that work as well as mine do for me.These braces are

fully custom made for your feet and not off the shelf. Oh and with CIGNA they

were free to me.

Geoff in Phoenix

[Guest guest]

I just heard from Hanger that my insurance covers 90% of the Blue Rockers but

not a single penny of the custom inserts. They only cover those for Diabetics!

Almost $500 for the inserts alone and another $140 for the 10% not covered.

Crazy that the old plastic AFOs are completely covered!

In His Most Merciful Name,

Ziegler

[Guest guest]

The diabetic community & their supporters have fought for decades to get

legislation passed in many states mandating insurance coverage for things, such

as custom-molded inserts for diabetic patients, which were previously not

covered. 

http://www.ncsl.org/IssuesResearch/Health/DiabetesHealthCoverageStateLawsandProg\

rams/tabid/14504/Default.aspx

The CMT community can do the same.  Write to your congressmen/women.

________________________________

From: <lambssupper@...>

Sent: Mon, May 3, 2010 2:43:43 PM

Subject: Re: Braces

 

I just heard from Hanger that my insurance covers 90% of the Blue Rockers but

not a single penny of the custom inserts. They only cover those for Diabetics!

Almost $500 for the inserts alone and another $140 for the 10% not covered.

Crazy that the old plastic AFOs are completely covered!

In His Most Merciful Name,

Ziegler

[Guest guest]

Talk to the place that makes the orthotics. Mine were supposed to be

$500, but because I had to totally pay for them myself they gave me a

discount and only charged me $260.