Re: Helios

[Guest guest]

Bob,

Thanks for the response.

Jackie

[Guest guest]

Sheila,

I too was suprised that Mitch would have been rude. The only thing I could think

of was that he was really pressed for time and it was a bad day and may have

gotten a bit defensive about the competition. I have found Mitch to be a

pleasure to speak to, and extremely informative.

Jackie

[Guest guest]

Here is their website www.ordesignslv.com

Also, they have had many write ups in CMT related articles.

 

Wayne

  

[Guest guest]

Hi Laine,

Did you go to Vegas to acquire the Helios and how long did you have to

be there? I live in the FL Keys.

[Guest guest]

Hi ,

Yes, I did go to Vegas for the Helios and the normal time Mitch requires is one

week as I said before, you or any fellow CMTers in the area are more than

welcome to see my braces.

If you like you can call me 561-620-3889 I live in Boca. I hope you make the

decision that is comfortable for you.

Thank you & good luck

Lainie

[Guest guest]

Hi,

Does anyone have this brace?  Please let me know your opinion.  Am interested in

possible purchase.  Would love any other brace recommendations as well.  Just

looking for something others are happy with.

Thanks so much!

[Guest guest]

We are all so different, I wish I could give you a defined answer. My opinion

the Helios are great for standing, but if you have weak quads, for myself,

difficult to walk in. Custom Composites are also good for standing(not holding

on to anything) and give me some flexibility.

[Guest guest]

I have the Helios too, and for me they don't work outdoors. This is because they

are rigid underneath and can't bend over uneven surfaces, as  normal shoes do.

Indoors they are great, easy to stand and walk in. I find it troublesome to put

them on/take them off, and since I am an active person going around all day, I

usually only wear them for work, or else I would have to take them off when

going out. I work in an office with long corridors, the best place to walk with

Helios, really. I am looking for other braces now that are not so rigid, and

which I can use outdoors too.

Beata

[Guest guest]

Beata,

I totally agree, Helios (I think) are made for level ground, I'm a little upset

with people paying all that $$$$$$$$$$$$$$$$$$ and then not being able to wear

them, then what? Please, I know there are some they work great for, I'm

speaking for myself. Try looking into the Custom Composites.

Good Luck

Lainie

[Guest guest]

I am also considering Helios as they seem less bulky and more " sleek " than the

hinged AFOs I now wear. I was quoted two prices: $10,000 if you don't need to

walk on uneven surfaces and $12,000 if you do need to walk on uneven surfaces.

Has anyone in our group tried the $12,000 version? If so, is it all that it is

cracked up to be?

Thanks in advance for your input.

J. Warren

[Guest guest]

I agree with Laine also; I think before you decide on Helios, you need to really

determine your weakness. If you have very weak hips or very weak quads, they may

be difficult to wear. (thank you Laine for figuring out why I was having a hard

time in them!)

I too got these 1.5 years ago and have been unable to walk in them yet, but that

is my goal and I am working with a physical therapist to help me now.

Jackie

[Guest guest]

First I want to clairify that these braces are a fabulous design and a g-dsend

for those that have stronger muscles in the hips and quads. I have the more

expensive ones, but have not been able to test them as I can't take more than

one step in them at this time. See my previous post from today.

Jackie

[Guest guest]

:

Why don't you just check with your PT to know if the Helios are right for you.

There is no reason to waste all that money if they won't work for you.

Marin from Bridgeport, CT

[Guest guest]

,

I realize it's a very expensive decision, but please try to speak to people that

actually have them. I don't see how a PT could know unless they see you walk in

them, by then ???????????

I'm sure you will hear good and not so good, but PLEASE if you decide to go WEAR

THEM OUTSIDE NOT JUST IN THE OFFICE. I can't tell you how important it is, the

planet is not LEVEL.

For myself, I wanted them to work sooooooooooooo bad that you tell yourself it

gets better. The way I walked in Vegas did not change. I do have weak quads.

Lainie

[Guest guest]

Sorry - The post about Helios was for not

Laine

[Guest guest]

Hi there- I have the pair of Helios that were $12000 and I still hate walking on

uneven ground. I can do it but it is a little awkward at times. They are my

first pair of AFOs and although I have nothing to compare them with, my balance

has been returned to near normal and my stride is normal as well. I have had

them for 2 1/2 years with no problems. If you have any questions please let me

know.

[Guest guest]

Lainie:

Your PT knows your strength level and weaknesses. They are also trained to know

what different braces or AFOs are; their strength and weaknesses too. For

example: my PT wants me to wear only a full brace, the plastic cast kind. I

asked my PT about wearing a ankle hinged one but she said I don't have the

flexability to walk in them. She even showed me to understand. I heard

someone saying on here that you have to have strong thighs and hips to correctly

use them. Still, I would check with your PT.

[Guest guest]

,

How many times has your PT seen the Helios ?

Laine

[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]

Glad to hear they worked for you, Sheila. Did you get them from Mitch? The

$12,000 ones?

Thanks!

JoAnn N.

Newfoundland, Canada

(originally from NJ)

 

[Guest guest]

Dear JoAnn,

 

Yes from Mitch, they are the ones that were $12,000. for the pair, but they also

included test braces that were made first.  So they actually make you two pairs

of braces, which is part of the cost.  I was also shown other carbon fiber

braces by Mitch, which were non-Helios styles, but they were carbon fiber and

cost a lot less.  I felt very comfortable that I was given choices, and based on

what each choice offered, I ultimately made the decision on what I wanted. When

the braces are on, I walk quite normally, no one would know unless I was wearing

shorts!

 

Shelia

[Guest guest]

Hi Jackie,

Thanks for your sharing experience about the Helios braces! Right now it seems

like a draw between those who love it and those who struggle to get used to it.

I found it hard to manage using them becuase of the lack of flexibility for my

foot to move, just like you. When my foot moves, I can compensate for things on

the gound, rocks and things, but if I step on a rock with Helios I don't feel

secure. I almost fell once with them, that was when there was a small slope. I

didn't notice, tried to walk down it and I almost fell. I regained my balance,

but strained my thigh muscle, it ached for weeks.

I have a new theory, but I am not sure about this either. Maybe the Helios are

good when nothing else works? I mean if a person's gait is very bad, and the

alternative is wheelchair? Maybe I am a too good walker for them? I remember

Mitch told me that some people come to his clinic in a wheelchair, but walk out

with the Helios! (Great!)

Also, the first day he asked me to practice  " a lot " with them, and I asked:

Should I walk to the hotel? (That was a mile or two away, I think). He said: No,

haha, just walk a couple of times infront of the clinic! (100 yards or so...) I

thought, well I could walk to the hotel without the braces, if it would be

necessary, so why this short distance then? But he thought I was joking! (But he

is a great person, and he really want to help people, that's true!)

So we are all different, and it seems to be a 50% chance that the Helios will

change your life! Yes,they are expensive, and it should be good to know for

those who want it, that it might be great or...not. There should be an insurance

for them: If you can't use them, you get some money back.

Beata

 

[Guest guest]

Dear Beata,

 

I respect your experience and your feelings.  I have had a different experience

and feelings than you.  I had asked to speak to several people before I went out

to be fit.  They were of all different weakness levels and different ages. 

They all went over the fitting process, as that was a big one for me, as I

needed to be there for a week. 

Mitch Warner did let me know that there are very specific break in instructions

and training instructions for the braces, that I must follow.  This was given to

me in writing. I remember asking him questions about those instructions, and I

was given very detailed answers. He let me know that sometimes patients did not

follow those instructions, and that ususally led to problems.

During my break in period with the braces, I did have some questions during the

first week I got home, called them at Helios, and I was given detailed walking

techniques to help me.  It really made a big difference for me. It was made

clear to me when we were finished, that if I had any problems or questions to

please call.  

Now I walk normally as I have posted before.  It is unfortunate that they did

not work for you.  I feel that making a statement that the Helios is a 50%

chance that it will change your life is a very unfair.

My life has changed 100%. Also, when I was there, I was told that on the second

day of fitting, that if I did not like the results with my test braces, that I

could stop then, and just pay $2000.00 for the standard test braces, which I

thought was very fair.

As I posted before when talking about surveys, I worked in the corporate world,

and I also worked in auditing where everything is cross referenced.

To get the Helios, you do need a prescription from your medical doctor.  I had

thoguht that you can just buy them if you were not using your insurance (you

mentioned insurance).  It was explained to me that even if you pay for the

Helios without insurance, that you have to get a prescription from your medical

doctor, to make sure that you are a candidate for this type of brace.  They will

not fit you without a prescription.

Yes, I am very, very happy with my Helios, they are miraculous to me, and I

never thought that my calf muscles could actually get bigger.  If they come out

with a different style to do different things, shoes, etc; yes I would get

another pair.

 

Shelia  

[Guest guest]

Hi,

 

I am a happy Helios wearer, and try not to get involved with any Helios posts,

because I may be considered biased. But I have to say, what you are posting

Beata, your theories,

to me sounds like you are going out of your way to badmouth. 

If you have ever read all of the articles by patients in the CMTA newsletters,

and the HNF newsletters, you would know that the Helios is being used many many

extremely active people, not wheelchair candidates. 

I once approached them at Ortho Rehab, for Helios, about a friend of mine who

was in a wheelchair, and was told that people who are already in wheelchairs are

not good candidates, because they already stopped walking. These kind of false

theories are nothing but bad gossip! 

 

Wayne 

[Guest guest]

Hi Sheila,

I am glad that the Helios work so well for you! It is great! But unfortunatelly,

some people have a though time to get used to them. Several people who answered

my survey here struggle with them, without really being able to use them the way

you can! So that's what I meant with a 50% chance: Some people (about half in my

survey) like them and can walk very well with them, and the other half can not.

I did not get written instructions of how to practice with the Helios, but I

also felt that they should be good at once, or I would not use them. Practicing

is not what I have time to do right now, with a job, a household and a child...

My Blue Rocker braces are just put on in the morning and off at night, I walk

and stand steadier and no practicing or training plan is needed. I think that

since the Blue Rocker suffice for me right now, I will just wear them, and in

case I need more support in the future, more rigid braces, I will have another

go with the Helios.

My physiologist did approve of the Helios braces, but the physiologists

just really don't know before for sure, if they will be wonderful or not...

There is just no way of knowing, so real money-back-guarantee insurance would be

best. I had a though time walking with the plastic pre-braces Mitch made too,

but I was really hoping the final ones would be a lot better (they were too, but

not enough, obviously). 

I really like Mitch too, and the Helios braces seem great for so many people! I

think he is doing a great job and he is a wonderful person. No one else is an

expert in the same degree as he, when it comes to braces for people with CMT.

Bye

Beata