Re: Helios

[Guest guest]

I have heard alot of good things about the Helios brace and Mitch on this

group.

I am wondering if anyone has had any negative or less than expected

experience with the Helios.

Thanks,

[Guest guest]

Hey ,

I too considered the Helios....what is the problem you are referring

too when you said you were worried that the Helios and the other AFOs

caused the same problem? Just curious...good luck with them!! What

kind of AFOs did you previously have?

Jimmy

[Guest guest]

Jimmy,

Regular AFOs cause me to walk with a gait that my legs are not strong

enough to handle, which caused me to collapse and fall. I've been " practicing "

with the Helio's and I'm seeing a lot of

improvement...I'm getting more hopefull that they will help! I'll be sure to

update the group on my progress.

[Guest guest]

I would like to know if insurance covers them and if so where do I go to get

them. I have used these AFOs which are plastic for years and would love to look

at other options. If not how much am I looking to spend on them? Thanks

Andy

[Guest guest]

Here is the link http://www.ordesignslv.com/index.php

[Guest guest]

Andy,

I found when I checked them out they were much more expensive than

other AFOs. My orthotist thought they were good but more of a gimick.

I like my AFOs I got from Wade Bader at Bader Orthotics in Tampa. He

makes his shorter, sock length, and cuts them out in the back like

metal braces. This makes them much cooler and less likely to rub my

skin.

He is able to do this because he uses graphite and kevlar which

makes them thinner and stronger. I really like these. He will make

them any color or design you desire. He only wants to make you happy.

Get back to me if you want to know more about them. I am on im

at cockerham_2000.

His number is 813 962 6100. He made my last pair overnight. I flew in one day,

got casted, and picked them up the next day. I have a pic of mine if you want me

to send it to you.

Bob

[Guest guest]

Hi,

I am going to try and be straight forward, without giving opinions, as we are

not supposed to do in this group. I wrote in the past about people's

experiences with different braces.

Honestly, if you speak to 10 different people, I have found that you will get 10

different personal experiences on what works.

My sister spoke to a woman from Florida, who had her braces made at Bader

Orthotics.

This woman had one brace made, which was a carbon fiber brace. She said that

she could not wear it, it did no fit right, and was too stiff. They made her a

second brace, and she said it was the same problems.

She then did research on the net for carbon bracing, and found the Helios in Las

Vegas. She told us that the Helios gave her balance back, and that she was able

to walk much longer than she had in years. She also said that the Helios was

more expensive.

Since then, my sister wasted no time and went to Las Vegas for the Helios. She

got her balance back, and now walks with ease. Family members who did not know

she was going to get braces, saw her after she got them, and asked, " What did

you do? " , because she was walking normal again. For my sister it was a life

changing experience, and we had heard this from a few Helios users beforehand. I

will be going to get them next, after the Holidays.

Good Luck to all and Happy New Year!

[Guest guest]

Thanks for the information, unfortunately I am in NJ and it seems like it would

require a flight to CA to get them and it seems it's not something insurance

would cover.

CMT is a horrible disease and it seems there is little medical advances to treat

it but I mostly worry about my daughter who is 6 1/2 and appears to have similar

symptoms as I did when I was her age.

I do not think its worth having her go through what I did her age with

diagnosing the disease only to give her a label and little hope. I hate to be

so negative and I am thankful I have led a pretty good life up until about a few

years ago where the disease has really progressed.

The AFOs are good but I can't ever really take them off. It made my legs

atrohpy so much and have become completely dependant on them.

Does anyone find certain physical therapy helpful or certain exercises? I can

not tell if it makes it better or worse but I am willing to do anything if I

know it is helping.

I am also exploring surgery but was told years ago it would only help a few

years and I would have to go keep getting them done and its a year recovery and

I can not afford to be out of work that long. I haven't seen any CMT doctor

since about 10 years ago. I saw the #2 best neurologist in the world so they

say and I went to Philadelphia and my grandmother paid so much money out of

pocket. He was nasty and said " what can I say you have to learn to live with it

there isn't anything thats really going to help you. "

Thank you everybody for keeping the lines of communication open. Have a great

New Year!!!

Andy

[Guest guest]

, Take me with you!!!! lol I hope it works out and please let us know

how you made out. Does anyone know how much they cost?

Andy

[Guest guest]

Does anyone wear or know anyone who wears the new Helios braces? I'm

looking into getting them.

B.

[Guest guest]

, here's the link for Helios - phone numbers and email for contact

at the bottom of the web page http://www.ordesignslv.com/ You might want to

scan through our Archives for past posts on Helios too.

~ Gretchen

[Guest guest]

Hi JoAnn,

Are you sure you got them in Las Vegas? I got mine in Las Vegas, but they are

the Helios. I have actually had them for months now, and was able to run for a

short distance, and I never had a problem with them. You said that you got the

Double Helix, what I understand is that there is a company in San Diego making a

Double Helix brace, which is knock off of the Helios. I have the Helios and so

does my sister. I also read about a fellow CMT'er, who is able to do marathons

with the Helios.

K.

[Guest guest]

Jackie,

How are you doing with Mitch's braces?

Lainie

[Guest guest]

I need to practice a lot more; we have had a LOT going on and i have not taken

the time that i should, so to answer your quesitons, i am not " walking " in them

yet. thanks for asking and reminding me to do what i should be doing! i think i

will work with them today!

jackie

[Guest guest]

shelia hi i have the helios braces,if you would like to ask me any questions (or

anyone else} please feel free to call me anytime.Lainie 201-823-1431

Laine

[Guest guest]

shelia,

i could say a few things to you,but you do not know me,i would not waste my time

or this cmt web site time being anything but honest and sincere,i'm sorry " YOU "

have misunderstood me,yes i do have the helios and yes they are the best for

balance but i can only speak for myself,and YES i will always check out new

braces and always keep up to date what is out there. i have sent perfect

strangers to mitch that i have stopped on the street,so when you do forward my

e-mail to mitch please tell him i said hello.hope you feel better soon.

Lainie

[Guest guest]

Hi Donna,

Do you mind me asking, where do you live? Yes I do have the Helios braces.

Lainie

[Guest guest]

Donna,

I have heard good and bad about those braces. Mainly that they are

over priced. Some people have issues with Marmaduke Luke who is

the orthotist behind them. They were very expensive when I talked to

him about them. My orthotist thought they were ok just overpriced. The

video showing the girl walking in them on their website looks good

too.

I think you could get close to that with a pair of well made

AFOs that were fitted by a good orthotist. I have some of the best I

have ever worn made by Wade Bader at Bader Orthotics in Tampa. These

are short and cut out like metal braces to have less skin contact and

be less hot and sticky. Also they were the normal price I have been

paying for AFOs not the high price I was quoted by Helios.

The problem today is most orthotists don't wear AFOs themselves so they don't

know what works and what doesn't.

When I first started wearing braces, it was the tail end of the polio epidemic

and a lot of the othotists had had polio or some other disease and wore braces

too so they knew how they felt and worked.

Hope this helps.

Bob

[Guest guest]

Helio's seem pretty expensive, I would love to know if they are worth it?

Geoff

[Guest guest]

Yes to my knowledge, you have to go to their office for fitting.

[Guest guest]

Hi Donna,

I contacted the Heilos place in Nevada and they sent me to an orthotist that had

been trained by them.

I have had two horrible orthotic guys. 1 not so great guy and 2 wonderful guys.

Even the wonderful guys don't get it right all of the time.

I can only give a few tips because I am still wondering how to predict the out

come also. My two boys wear AFOs.

After having a few horrible pairs, I always ask for referrals now from this list

or my Doctor. After I pick them up I go right to the doctor and have him check

them out. If he wants anything corrected I have the Dr. call and talk to he

orthotist himself.

Before we go I ask over the phone if they have other CMT patients. I also ask if

they send their AFOs out or make them on site.

My experience is if they are made on site the modifications are same day. I

have ran into a good orthtics guy that didn't want to remake an AFO that he

messed up. He also only wanted to make AFOs for my kids once a year and I prefer

twice a year while they are growing. It's is hard to find the perfect person for

the job. Blah

[Guest guest]

Donna,

I have a pair of these from the guy in Vegas. I have a hard time with

them because of my weakened quad muscles. If your quads are weak I do

not suggest getting these. I can discuss this more with you if you like.

It will probably require several trips as well for molding, then

fitting, then follow-up.

Jim

[Guest guest]

Laine,

I live just outside DC, so I would have to go to Las Vegas for the Helios.

Donna

[Guest guest]

,

I agree with the part where they mess up at times. The brace person where we go

to left a few months ago and I am not very happy with the new guy. I wish I

could find another place. The new guy tries to tell me what I want done with my

brace but the thing is he does not KNOW me. I get so sick of it.

Sue

[Guest guest]

Jim

How long have you had them? I also have them and having difficulty because of my

weak quads.

Jackie