Re: Any experiences with Helios?

[Guest guest]

Hello ,

I've had the Helios for about a year now and I can say that they are

definetly the most stable braces I've ever had. It's hard to say if

they are worth it for you because you problems could be very different from

mine.

I will say that they are not a miracle. I'm still not able to walk any kind of

distances and walk over uneven ground but that's probably because of lack of leg

strength.

Feel free to send me an email if you want to know more.

[Guest guest]

Hi , it's not you, I too have the Helios and can not walk down a ramp or

uneven ground , it's great for standing in one place, nothing like it , but some

how I wish Mitch could make the foot plate more flexable so I could feel a

contact with the ground. I do have weak quads, I know that's part of the

problem,I just don't care, I feel like the walking on a SEE-SAW. I can't do

without them - just want better ($$$$$$$$$$$$)

Thanks

Lainie

[Guest guest]

To and Andy and others who have inquired about Helios braces, I went to

Las Vegas in April 2005 to be fitted for mine at Ortho Rehab Designs. They cost

$10,000 ($6600 was covered by insurance, $2000 from MDA, and the rest out of

pocket) and in my opinion they are worth every penny.

I was diagnosed with CMT 2 in 14 years ago when I was in my forties.

As the disease progressed I have worked my way through custom-made

plastic (polycarbonate) leaf spring design braces, hinged AFOs, off-

the-shelf Toe-Offs and Ypsilon braces, (the last two were carbon

graphite), and even tried some SAFOs which didn't work at all, until

the local orthotist couldn't do any more for me. At this point I had

moderate foot drop and couldn't stand without support and used a cane all the

time.

The Helios braces changed my life. Major advantages: I can stand

indefinitely without hanging on to something; I can walk on level

surfaces with a normal gait; I have absolutely no problems with sore

spots on my feet; they fit nicely into a variety of shoes other than

sneakers; and they seem quite durable, with no signs of wear and tear after

almost two years.

It's not entirely good news, however. As noted, it is difficult to walk on

ramps or uneven surfaces, probably because of my weak quads. The trade-off for

marvelous stability provided by the bracing is an acceleration of the atrophy in

my calves. I can no longer get around the house or the pool without a walker.

Also, because I can't flex my feet in the braces I would have a shortening of my

Achilles tendon if I didn't do water walking every day.

On balance--and for the first time I have some!--the advantages of

the Helios braces have far outweighed the need to make some minor

accommodations in my lifestyle. I have a wonderfully fulfilling and

rather high profile career. Most people don't notice my disability

until I ask for help stepping up onto the set for a TV show or need

to use the handicapped entrance at the health club to avoid the

stairs. I also know where the curb cuts are at every shopping center

in town!

I hope this information is helpful to you.

Donna in New Hampshire

[Guest guest]

Donna,

Thank you for the info. I am wondering why they are only offered there. They

must be considered an altnernative treatment if its not uniform across the

country. It seems like it really helps though and I will have to give it some

major thought. Did they help you get the funding from the MDA? Have a great

New Year!!

Andy

[Guest guest]

Thanks Donna for the very informative post...we couldn't agree with you more!

I guess what I am hearing is that if you weak quads, you do not get as much

function.

My sister and I both have strong quads, luckily the disease has not affected our

quads.

With the Helios my sister so far has been able to navigate uneven surfaces,

hills, curbs, you name it and her speed has increased as well. My

brother-in-law now cannot keep up with her.

Thanks again for the wonderful post Donna, and sharing your personal history.