Re:Survey - Helios braces

April 1, 2009

Hello!

Before I get to the survey, I feel I need to give my AFO history.

First, we must remember that WE ARE EACH AN INDIVIDUAL, every person with CMT is

different, even though we may have similar circumstances & symptoms, and what

works great for one of us CMTers may not work at all for another.

I am a 45 yr old female, diagnosed at age 9 (grandfather & mother had it, so it

was by my symptoms and family history). Both ankles were fused when I was 12

(triple arthrodesis). I have had my Helios only since Aug 2008.

I have had to use a cane for about 15 years now (only occasionally at first,

then it became a necessity), and have had to have some sort of AFO for about 10

years now, with my cane as well.

I first tried the " custom fit " plastic L-shaped, but they were much too rigid

and did not work for me (I felt like enstein, and was much less stable).

My orthotist then ordered me the Camp Scandinavia TOE-OFF. I fell in

love with them immediately and felt as if I could walk for miles and days!!

They began to break down (the fiberglass began to de-laminate, which they have

a real problem with) after not quite 2 years (past the 1 yr warranty,of

course!), so we replaced them with the same. I used them for almost another 2

years, but they were no longer giving me the support I needed.

So, we moved up to the Camp Scandinavia BLUE ROCKER, due to their being a

thicker, stronger, more rigid AFO with better support, but they still gave me

the push/bounce that was so great about the Toe-Off's. I loved them, too. They

were also supposed to be the answer to the de-laminating problem, but that

proved not to be true. My Blue-Rockers began to break down, so we had to buy

another pair of them as well. As time went by I needed more support than they

offered, due to my continual CMT progression, and the plastic L AFOs were again

not the answer for me. Which is why, after MUCH research &

prayer, I finally decided on the Helios.

IT TOOK ME 3 YEARS to really commit to going for the Helios, due to the

cost more than anything. However, I was truly out of options for me, and I

was scared. However, once I made the decision to go for it, by the Grace of

God, we managed to get the money together. And it's been blessing after blessing

ever since.

The entire experience of going to Las Vegas, spending time with Mitch

Warner & his staff, and getting my Helios braces was ABSOLUTELY WONDERFUL! My

husband & I are not " Vegas folks " , but we really had a great time, even in

the sweltering heat of August. Mitch is super, genuinely nice guy who really

wants to help people. He is not doing what he does to " make the big bucks " .

I LOVE MY HELIOS, & SOMETIMES WONDER HOW I EVER GOT BY WITHOUT THEM

BEFORE! They offer me such great stability & help that I am able to conserve

energy, and they make me feel stronger than I really am, I walk tall & proud

again now, and they make me feel SAFE. The thing that I suppose makes the

most impact on my life is that, with my Helios, I am finally able to STAND in

one place, upright, with absolutely NO aid or assistance of any kind!!! I can

STAND STILL...IN ONE PLACE!! Do you know how many years it has been since I

have been able to do that?!?! I know most of you can truly relate!

While

waiting in a line, I no longer have to do the " CMT Shuffle Dance " , like

wobbling around, having to step here & there trying to stay in a semi-steady

position, getting really tired & afraid I'll fall down at any moment. I don't

have

to lean on a wall, a column, a cane, a chair, a person....nothing! It is

soooooo cool!!! I can walk up to a street corner and ACTUALLY STOP & STAND

THERE waiting till it's safe to cross the street, without the fear that I'll

tip over & get hit by a passing vehicle, or trip while crossing because I got

so tired doing the CMT Shuffle Dance. AND, speaking of dancing, I can

actually do a little REAL DANCING again! To me and my loved ones, what the

Helios

do for me is simply priceless.

The Helios I have are different than the ones they are doing the study

on. Mine criss-cross in the back, but the 2 pieces do not touch. I can send

a photo if anyone would like to see them...just email me & ask. They are

flexible, but very strong, & I don't think they will EVER wear out or break

down, thank goodness. I do still have some trouble going up hills and steps,

but that's because my quad muscles are so weak (I am working on that). But I

can walk great distances very comfortably, so walking is an enjoyment for a

change! I haven't been able to go up hill or stairs without a lot of help in

so many years, I didn't expect any brace/AFO to be able to do that for

me...so I take the ramps, or I use the hand rails, or an arm of my husband or a

friend, etc.

I still am wearing the same shoes I did with the other AFO's , only I had to go

up 1/2 a size. No big deal, since I wore a 5 with no AFOs, then a 5 1/2 and now

a 6...baby feet for 5'7 " ! Thanks for doing the survey.

Peace & Blessings to You All,

Holly Waters

Corpus Christi, TX

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Helios Survey

1. How long can you stand without support? (without braces) A. 0-1 minutes

*With my Helios I can stand without ANY support for much longer than 15

minutes!

2. How far can you walk outdoors? (without braces or aids) A. 0-100 yards

*With my Helios, more than 500 yards! If I do not wear my Helios, I am

virtually unable to walk outside of the house without using my cane, and

usually

I will use a scooter at a store if I am not wearing my Helios for some

reason. I mean, I can walk barefoot and get around my house and yard alright,

but

I haven't been able to walk wearing shoes without braces for several years

now without feeling completely in danger of tripping or falling, even with my

cane.

3. Do you use any other aids except Helios braces? In case yes, what?

*A cane, but only occasionally when I wear my Helios, which I got this

past Aug 2008. For instance, if I am having one of my weak days, or if I

know I am going to be carrying packages or bags or what-not. Sometimes I take

my cane along with me " just in case " , because I am still working on gaining

strength that I had lost in my quads.

4. Do you use your Helios braces always? (morning-evening)

Yes. If I am leaving the house to go anywhere, I put them on. They are

a part of my wardrobe now, just like shoes, undies , a shirt & jeans, or

even a dress...just like my other AFO's were before. I do not put them on as

soon as I get out of bed, though, because I walk around fine in bare feet or

house shoes. I will also put them on to do house work, because wearing my

Helios saves me energy and enables me to work more easily (like vacuuming, for

instance). I wear them ALL DAY LONG in complete & total comfort, but

usually take them off in the evening when we sit down on the couch to watch tv

or

whatever.

5. Can you walk with your Helios braces outdoors on uneven ground (lawn,

stones, curbs, slopes)?

Yes. As I explained above, I do have some issues, but I AM ABLE to walk

virtually anywhere, even on the beach in the sand while holding my dog on a

leash...wow! I still pay close attention to where I am walking, because we

CMTers can easily get tripped up & stumble on the slightest change of the

ground

level. But, I no longer have to keep my eyes glued to the ground in front of

me for each and every step. It is a very freeing, positive change that I

have had to learn & am still adjusting to.

6. What kind of CMT do you have, and when did it start?

CMT 1A, I think, but I have not been tested to get a secure diagnosis.

I inherited it from my mother, her father, his mother.... I have no

siblings, but one of my uncles had it, however he showed absolutely no symptoms

until

he was in his 30's. He played football and was very active. I began to show

symptoms such as ankles turning over a lot, stumbling & falling, & bad

balance at about age 6 (my parents probably saw the physical signs, like the

high

arches earlier).

April 2, 2009

Holly,

I too have the ones that criss cross in the back. I am curious, don't you feel

like frankenstien in these also? What i don't like

is there is NO flexibility in the foot. Read my post about my experience with

the helios. I am not giving up yet and I have

a wonderful physical therapist who thinks these braces are good and we just have

to strengthen my hips.

jackie

Re:Survey - Helios braces

Hello!

Before I get to the survey, I feel I need to give my AFO history.

First, we must remember that WE ARE EACH AN INDIVIDUAL, every person with CMT

is different, even though we may have similar circumstances & symptoms, and what

works great for one of us CMTers may not work at all for another.

I am a 45 yr old female, diagnosed at age 9 (grandfather & mother had it, so

it was by my symptoms and family history). Both ankles were fused when I was 12

(triple arthrodesis). I have had my Helios only since Aug 2008.

I have had to use a cane for about 15 years now (only occasionally at first,

then it became a necessity), and have had to have some sort of AFO for about 10

years now, with my cane as well.

I first tried the " custom fit " plastic L-shaped, but they were much too rigid

and did not work for me (I felt like enstein, and was much less stable).

My orthotist then ordered me the Camp Scandinavia TOE-OFF. I fell in

love with them immediately and felt as if I could walk for miles and days!!

They began to break down (the fiberglass began to de-laminate, which they have a

real problem with) after not quite 2 years (past the 1 yr warranty,of course!),

so we replaced them with the same. I used them for almost another 2 years, but

they were no longer giving me the support I needed.

So, we moved up to the Camp Scandinavia BLUE ROCKER, due to their being a

thicker, stronger, more rigid AFO with better support, but they still gave me

the push/bounce that was so great about the Toe-Off's. I loved them, too. They

were also supposed to be the answer to the de-laminating problem, but that

proved not to be true. My Blue-Rockers began to break down, so we had to buy

another pair of them as well. As time went by I needed more support than they

offered, due to my continual CMT progression, and the plastic L AFOs were again

not the answer for me. Which is why, after MUCH research &

prayer, I finally decided on the Helios.

IT TOOK ME 3 YEARS to really commit to going for the Helios, due to the

cost more than anything. However, I was truly out of options for me, and I

was scared. However, once I made the decision to go for it, by the Grace of

God, we managed to get the money together. And it's been blessing after

blessing ever since.