Helios braces

[Guest guest]

Hi Amy,

 

In my opinion, they are superior in every way.  I had plastic braces as well,

and they did not work, similar to your experience.  Mitch Warner did a very

thorough examination of my lower limbs, and explained to me what muscles had

strength, ans which ones ones had no function.  I remember him saying that he

wanted the braces to work with what I had left.

My muscles that lift my ankles and toes, are completely gone. But, my calf

muscles still work moderately.  So he designed the braces to work with them,

which help me push off the ground, and walk faster, without me being tired. 

Also, when he took my molds, he put a lot of correction into the molds, and I

could feel my feet being straightened out.

This was never done for me when I had molds taken for plastic AFOs.

 

He also made test braces first, which I think someone else mentioned in their

experience with Mitch Warner.  The test braces were made to check my balance,

comfort, and walking, before he actually made the Helios.  That is definately

part of the price as well, as they made 2 sets of braces for me in one week. The

test braces are actual plastic type braces.  So what they are doing, is testing

the enitre brace, in an actual test brace, before the Helios is made.  Mitch

told me that If I did not want the test braces made, that it would reduce the

price by $2000.00, but I went ahead with it, because I wanted the best result

possible.  I am glad that I did, because I was actually able to see all of the

corrections made for my balance, comfort, standing and walking that were made.

That's why he works with people for a week.  In the last 4 years, before getting

the Helios, I had easily spent more than 12 thousand dollars on braces that did

not work, and my quality of life was poor.

 

As I said in an earlier post, my calf size has increased by a 1/2 " , since

wearing the Helios, and I walk normally without getting tired.  I also spoke

with some of his other CMT patients, who told me of similar results.

 

I hope I have given you a good description.

 

Good Luck,

Shelia

 

[Guest guest]

Hi,

I have Helios braces too. I went to Las Vegas from Sweden to get them. I do wear

them, but only occasionally. My balance is great with the braces, I can stand

still for hours wthout support. Walking on straight ground (indoors) is better

too. My problem with the braces is that they are hard to put on. It takes 15

minutes to get them on and then 30 minutes before my balance is ok with them on.

I don't have 45 minutes every morning! I am a busy person, I work, I take my son

to preschool... Usually, I only put my braces on when I arrive at my work,

because I can take a break to put them on and then work standing for a while,

until my balance gets better. Then I take them off before I go home. This is due

to the fact that I can't wear them outdoors. If there is a slope, a curb or a

rocky road, I can't manage walking at all. I think it is because they are so

rigid on the foot side. A normal shoe can bend a bit to compansate for

unvenesses, but the braces can't.

I discussed this with Mitch Warner, who makes the braces, and he thinks that I

should get better shoes (I´ve tried a lot of shoes!!!) and to practice with a

physiotherapist.

What's great with Helios is that I feel a lot stronger now. They are like

work-out for muscles!

Has anyone with Helios experienced that it is hard to walk on uneven ground?

Beata

[Guest guest]

Hi Beata,

I have the Helios braces also and love them. They have changed my life as I

could not walk very far with my old plastic braces and my balance was terrible

with the plastic ones.  The Helios braces are difficult to walk on uneven ground

or going down hills. I have just adapted and stay away from uneven ground. Its a

small price to pay for me to be mobile again and have my balance restored.

Betty

[Guest guest]

Hi Beata,

 

Uneven ground was never a problem for me when I received my Helios

braces. Before the Helios, in my old braces, even grass would throw me off

balance.  But I did initially have problems with a few pairs of shoes.  The

heels were too flat, and Mitch suggested that I get a shoe with a slightly

higher and softer heel. That actually solved the problem.

What types of shoes do you wear?  I tried Mephistos which are absolutely

wonderful.  Are your hands weak to get your braces and shoes on? I totally

understand what you are saying about the muscles, my muscles definitley got

stronger.

 

Shelia 

[Guest guest]

Hi Beata,

Yes, I too have a problem walking in the Helios,I have always said that they are

great for standing. I probably am one of the first to try the Helios,when Mitch

was sharing his office with Jon Nielson,at that time Mr. Nielson made my

braces then I was in fantacy world with all the promises he made, in my heart I

think he did his best, I just wish his best was good enough, not returning calls

and not standing by his word was at that time devastating for me.

The part he left out was they were not perfected. I must have 10 pairs of those

(broken) braces with several trips to Vegas,when I couldn't take it anymore I

decided to call Mitch who was working alone then. I told him I want want two

things,one to be able to wear shoes not sneakers (believe me I don't mean shoes

that I really want to wear) and to be able to walk alone and feel confident that

I wouldn't go flying when I came to uneven pavement or a small ramp.

I stayed in Vegas two weeks this time to make sure this would work. Well, I know

I could find some orthopedic looking shoes but for me that's not happening, Yes,

I also know some will say just accept it. I'm only sharing my feelings.I still

can not find shoes no matter if they are wide, or the heel is perfect for the

brace.

I agree the brace is too stiff, but the reason for that is my quads are weak. I

wish they could come up with a brace that could keep us standing but also have a

flexability in the foot plate (am I dreaming?) Would I go back too Mitch, yes

because I enjoy standing without holding on to anything and if I had

the$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$.

I no longer work so I don't think that is happening. I wonder how many others

walk away with these issues? We are all here to speak the truth and help each

other, this is my truth. Oh, by the way I still go flying,everything is a trade

off ,but still greatfull I can walk. PLEASE know I am only speaking for myself.

Thank you.

Laine

[Guest guest]

Hello everyone -- I wanted to put in my two cents on the Helios.

I went to Vegas to get mine two years ago, for my 30th birthday.

When he made them, Mitch said mine were the " tallest " he'd ever

done, and I was also one of the fastest people to pick up how to

walk in them (I was walking the same day I picked them up, and

became fully used to them within a week).

He did an amazing job of analyzing how my CMT manifested, and told

me more about my particular experience of CMT than any other

professional I'd yet met. I am a very tall, strong young woman, and

while I have CMT pretty severely, my body had done a fairly good job

of working around it and of hiding it -- a lot of force of will and

clean living. Mitch pointed out on my videotape the things my body

was doing to hide it, adjustments that over time would have

accelerated my decline.

Like many of you, I tried many different types of shoes, from MBTs

to New Balance to Converse, and was bummed that the Helios limited

my shoe closet even more that my old plastic AFO " legs. " But my new

Helios " legs " eventually found a home with for-real, no kidding

combat boots I picked up at a police uniform store. Big ugly black

ones. But when I wear the boots, I can walk much further, have

excellent stability on uneven ground, and can even make it up and

down stairs unaided with only a little extra concentration.

I have had to send my legs back 3 or 4 times over the couple of

years because I would develop cracks in them -- I think the physics

of the material vs. my height vs. the force I put on them, combined

with not wearing the optimal shoes, accounts for most of this. The

more I wear the combat boots, the less the cracks happen.

I also have to take extra time to put them on, and usually rope my

hubby into taking them off, but I can wear them comfortably all day

long, do all my housework, errands and computer work with no problem.

Besides the shoes, the difficulty in strapping everything on

(including the exact right socks in the exact right configuration),

and the occasional cracks, the only other issue I've had is a loss

of muscle. I had expected to gain muscle, but here's what happened -

- In my old legs, stability and balance was so difficult that my

abdominal core was extremely strong, as were my thighs and rear, to

compensate. With the Helios, I get to be lazy and rely on them for

support, so now I'm softer in the middle and I don't think I'm

overall as strong as I used to be. But on the plus side (big plus)

my rear and thighs are much smaller, so people usually think I've

actually lost weight (even though it's really a wash).

They've given me excellent stability and mobility -- I now have more

than one speed when walking. They also made my gait much

more " normal " looking, so people no longer ask me if I am recovering

from ankle surgery, which was a common question when I was in my old

legs.

Overall, I absolutely love them. When I have to send them in to be

repaired I dig out my old legs, and I am amazed at how flimsy they

are. And how incredibly fatigued I get when I wear them -- then I

remember that fatigue used to be the dominate force in my life.

No more with the Helios.

[Guest guest]

Hi Lainie,

 

Both me and my sister recieved the Helios in 2007, and we never had one issue

with them.

We both used to wear fancier shoes before bracing, but wearing less fancy shoes

or shoes that we really prefer, is a small trade off for walking with

full balance, and walking faster.

I can outwalk most of my friends with the Helios.  Don't take this the wrong

way, " but you would not wear sneakers if it made you walk better " ?  I personally

would never let vanity get in the way of my functioning.  I used to be pretty

vain, and still am, but with this disease I think that if we have to make a

sacrifice over preferred shoe wear, in order to walk better, well for me...that

is a no brainer! 

 

K.

[Guest guest]

Hi Beata,

 

I wish I was in Sweden right now!

 

I will find the Mephisto style or model number that I use.  I will need to go by

the store or call them.  I looked at the insides of my shoes, and the model

number was worn away.

You say that Mitch only watched you walk a couple of times? He worked with me on

walking for about 4 hours straight on the day after I got them.  That was real

helpful, because it helped me break a lot of bad habits that I used to walk

with.

 

Also, when Mitch fit my test braces, I came to Las Vegas with the wrong type of

shoes. I was using a taxi to get to his office, and was not sure where to shop

for shoes.

Mitch asked me my shoe size, and bought me a pair of shoes on his own time, as I

was really unsure about what type to get.  That was a big help, and above the

call of duty.

 

Incidentally, since I mentioned that my calf size got bigger after wearing the

braces, a man from our list emailed me privately, asking for a picture of my

calves!

 

I will find you the type of Mephistos that I wear.

 

Shelia 

[Guest guest]

Hi and everyone else.

 

I guess the shoe issues are easier for a man, I can just about wear everything,

even loafers. I feel for the women.  The only thing that ever wore down on my

Helios was the padding and straps, and they replaced that for me, and then it

was like when I first got them.

 

With my Helios, I agree with you ...no more fatigue...I absolutely love

them too.

 

Wayne

[Guest guest]

Hi ,

I thank you for your input,I have been wearing braces my whole life and now I

only do wear sneakers. I guess I didn't explain myself very well. Thank you

again,but as I ask everyone that has the Helios, do you or your sister have weak

quads?

Laine

[Guest guest]

Hi Laine,

I was touched by your letter. It is true that leaving the Vegas clinic was a mix

of feelings. So glad I could stand so well with the braces, but so upset that I

could not manage curbs or the small ramp outside Mitch's clinic. He said it was

a matter of practice, but now I have practised for months, and I am at about the

same level, except I have stronger muscles.

Yes, I think that stability and rigidity has to be balanced differently with the

" perfect braces " . They must bend under the foot, or else walking on uneven

ground is hard. Like wearing wooden shoes. I know some people think wooden shoes

are comfortable (probably no one with CMT though) but when rubber was invented,

most wooden shoes disappeared fast! Wonder why? Well, because walking is a lot

easier when you can bend your foot!

Having a foot drop does not mean you can't bend your foot at all. I bend my feet

quite well, although I have a foot drop. So you are right: The perfect braces

are not here yet!

And also I thought about the ability of standing without holding onto something.

It's great to be able to do it, a wow! feeling, but I really don't need to stand

still. The only situation when I do is in queues. So I just avoid queues or

bring something or someone to hold onto.

So I wear my braces mostly as a work-out thing, to strengthen my muscles. It is

a bit sad though, since they were so expensive + I had greater hopes before I

got them.

Beata

[Guest guest]

I had emailed Mitch Warner about issues that came up with Mr. -, that

became a topic in some posts, as I was curious because I had not heard about

this before. I have posted Mitch's response to my question, with his permission:

my original email is at the bottom of the page.

 

K.

From: Warner <ordesignslv@...>

Subject: RE: Helios Braces

kean_mom@...

Date: Thursday, October 23, 2008, 12:14 PM

Dear ,

 

The Helios is only fabricated by Ortho Rehab Designs.  The person you are

referring to, Jean- Nielsen, in the past had rented office space from our

company.

He had fit some patients with a carbon fiber brace, but it was not the Helios. 

He left my office somewhere between 2000 to 2001, and relocated in San Diego.

My company was always separate from his, as he saw his own patients.  His

specialty I believe was Polio.  He had never fit anyone with a Helios Orthosis.

The Helios is unique in that it incorporates a custom Kevlar/Carbon Fiber inner

structure and outer structure.  The Helios is an AFO, and there are numerous

different types of AFOs.

I have heard of this question in the past, and I hope this has answered your

question; as I can understand the confusion.

 

Best Regards,

Mitch

 

 

 

Warner, CPO

Ortho Rehab Designs

2578 Belcastro St. #101

Las Vegas, NV.  89117

702-388-9909

www.ordesignslv.com

 

Helios Braces

 

Dear Mitch,

 

As you know I received the Helios braces from you in 2007.  They have changed my

life, and made me happy again.  I belong to the list, which is a wonderful

forum for people afflicted with CMT to discuss our matters.  Recently there has

been much discussion about the Helios.  Two people have mentioined a Jon-,

who they say they got the Helios from in 2000, and they had terrible experiences

with this man.  I have not heard about him before.  I am just curious, was he

making Helio as well? As, I said, I am just curious as this issue came up on our

list.

 

Yours Truly,

Kean 

 

 

[Guest guest]

Hi Beata,

Yes, I too have a problem walking in the Helios,I have always said that they are

great for standing. I probably am one of the first to try the Helios,when Mitch

was sharing his office with Jon Nielson,at that time Mr. Nielson made my

braces then I was in fantancy world with all the promises he made, in my heart

I think he did his best, I just wish his best was good enough, not returning

calls and not standing by his word was at that time devastating to me.The part

he left out was they were not perfected. I must have 10 pairs of those (broken)

braces with several trips to Vegas,when I couldn't take it anymore I decided to

call Mitch who was working alone then. I told him I want want two things,one to

be able to wear shoes not sneakers (believe me I don't mean shoes that I really

want to wear) and to be able to walk alone and feel confident that I wouldn't go

flying when I came to uneven pavement or a small ramp. I stayed in Vegas two

weeks this

time to make sure this would work. Well, I know I could find some orthopeic

looking shoes but for me that's not happening, Yes, I also know some will say

just accept it. I'm only sharing my feelings .I still can not find shoes no

matter if they are wide, or the heel is the perfect hight. I agree the brace is

too stiff, but the reason for that is my quads are weak. I wish they could come

up with a brace that could keep us standing but also have a flexability in the

foot plate (am I dreaming?) Would I go back to Mitch, yes because I enjoy

standing without holding on to anything and if I had

the$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$. I no longer work so I don't think that is

happening. I wonder how many others walk away with these issues? We are all here

to speak the truth and help each other, this is my truth. Oh, by the way I still

go flying,everything is a trade off ,but still greatful I can walk. PLEASE know

I am only speaking for myself. Thank you

> -------------- Original message from Beata Boo <beataboo@...>:

--------------

>

>

>

>Hi,

>

>>I have Helios braces too. I went to Las Vegas from Sweden to get them. I do

wear them, but only occasionally. My balance is great with the braces, I can

stand still for hours wthout support. Walking on straight ground (indoors) is

better too. My problem with the braces is that they are hard to put on. It takes

15 minutes to get them on and then 30 minutes before my balance is ok with them

on. I don't have 45 minutes every morning! I am a busy person, I work, I take my

son to preschool... Usually, I only put my braces on when I arrive at my work,

because I can take a break to put them on and then work standing for a while,

until my balance gets better. Then I take them off before I go home. This is due

to the fact that I can't wear them outdoors. If there is a slope, a curb or a

rocky road, I can't manage walking at all. I think it is because they are so

rigid on the foot side. A normal shoe can bend a bit to compansate for

unvenesses, but the braces

can't.

>

>>I discussed this with Mitch Warner, who makes the braces, and he thinks that

I should get better shoes (I´ve tried a lot of shoes!!!) and to practice with a

physiotherapist.

>

>>What's great with Helios is that I feel a lot stronger now. They are like

work-out for muscles!

>

>>Has anyone with Helios experienced that it is hard to walk on uneven ground?

>

>>Beata

>

>

>

> > >

[Guest guest]

Hi!

I no longer wear the Helios braces. I now wear the off-the shelf braces called

Blue Rocker, which are almost same as Toe-off, but more rigid, more stable. The

difference between Blue Rocker and Helios, for me:

BR: Does bend slightly under my foot. Does allow my feet to move a bit inside my

shoes. Does allow walking on uneven ground, lawns, up/down slopes, ramps, curbs,

stairs. Does a great deal for the balance, I can now stand still, in queues etc

without support. Does not wear out my muscles. When I take them of, I can walk

as before. (but I waer them most of the time since I enjoy my balance to be

better. Like when I am cooking and have to spin around to get something from the

fridge - no problem with BR braces, but without I have to find support first

-slower).

Helios: Doesn't bend under the foot. This makes it hard for me to compensate for

unevenesses. Can't wear them outdoors! (Then what's the point?) I can stand

still, but my muscles get worn out, like after a work out session. When I take

them off, my muscles are overworked and won't support me. I can't walk at all

directly after I have taken my Helios off. Takes an hour or so before I can walk

again.

But! I thought maybe Helios is too much support for me right now? Maybe I am

walking too well for them? In case I need more support later, they might come in

handy!

Beata

>

>

[Guest guest]

 

I had the custom composite braces, before the helios.  The custom composites

brace did not work for me, they did not provide any stability for me.  The

Helios are wonderful, walking on uneven ground became very easy in a short time

after having the Helios. Worth every penny to me, and I would get them again.

 

Shelia

[Guest guest]

Hi Beata,

 

  We have spoken on here before.  I have had the Helios for some time now and

keep getting more active, and my calves have been stronger than before. My

doctors are amazed.  I am even thinking about participating in a half

marathon. I am glad that blue rockers work well for you, but you should know

that for others they do not, and I personally know of fellow CMT'ers that have

had skin wounds on their ankles accompanied by an infection due to that brace

rubbing their ankles raw.

 

Shelia 

From: BeataBoo <beataboo@...>

Subject: Re: Helios braces

Date: Friday, March 12, 2010, 8:55 AM

 

Hi!

I no longer wear the Helios braces. I now wear the off-the shelf braces called

Blue Rocker, which are almost same as Toe-off, but more rigid, more stable. The

difference between Blue Rocker and Helios, for me:

BR: Does bend slightly under my foot. Does allow my feet to move a bit inside my

shoes. Does allow walking on uneven ground, lawns, up/down slopes, ramps, curbs,

stairs. Does a great deal for the balance, I can now stand still, in queues etc

without support. Does not wear out my muscles. When I take them of, I can walk

as before. (but I waer them most of the time since I enjoy my balance to be

better. Like when I am cooking and have to spin around to get something from the

fridge - no problem with BR braces, but without I have to find support first

-slower).

Helios: Doesn't bend under the foot. This makes it hard for me to compensate for

unevenesses. Can't wear them outdoors! (Then what's the point?) I can stand

still, but my muscles get worn out, like after a work out session. When I take

them off, my muscles are overworked and won't support me. I can't walk at all

directly after I have taken my Helios off. Takes an hour or so before I can walk

again.

But! I thought maybe Helios is too much support for me right now? Maybe I am

walking too well for them? In case I need more support later, they might come in

handy!

Beata

>

>

[Guest guest]

Hi Sheila,

Wow, I am amazed! Half marahton! Please let us know if you decide to do it!

Do you run, or walk fast? I cant run, have never been able to, with or without

braces, but I can walk fast with braces (Blue Rockers).

For me wearing braces have resulted in loss of calf muscles. Not much though,

since I do excersices, but a bit. My quads are a bit stronger though.

Yes, wearing braces that do not fit perfectly, like the off-the shelf Blue

Rockers can cause pressure wounds. Too much deformity of the foot makes them

unsuitable. But no wounds for me, for me they fit perfectly!

Great we both found something that helps us! We are different and get support by

different braces.

Beata