Re: Survey - Helios braces

[Guest guest]

Helios Survey

1. How long can you stand without support? (without braces)

A. 0-1 minutes

2. How far can you walk outdoors? (without braces or aids)

A. 0-100 yards

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

Yes, Crutches

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

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

curbs, slopes)? No

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

CMT 1A 30 years ago

Kay

[Guest guest]

Helios Survey

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

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

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

I have been unable to walk unsupported with Helio braces due to weak quads and

hips. I am working with physical therapist to try to overcome this

4. Do you use your Helios braces always? (morning-evening) not yet! still

wearing old plastic AFOs

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

curbs, slopes)? no way

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

2, but still unknown. Started 25 years ago when I was 22.

Beata, do you find that the Blue Rockers are as stable as helios, that you can

lean into the brace and stand for unlimited amount of time? Do you find that you

put a lot of pressure on the ankle joints when standing from a sitting position?

I am curious to hear more since you had the helios and are so excited about

these.

Jackie

[Guest guest]

Thanks for your answers Jackie and Kay!

My answers would be:

Helios Survey

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

2. How far can you walk outdoors? (without braces or aids) B. 100-500 yards

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

Normally no, but if I walk outdoors, I need support. I bought a shopping cart,

called BagBuddy (Overstock.com) which is like a lightweight kid's buggy, easy to

fold, but enough support for me to walk. When I use my new Blue Rocker braces, I

don't need any support outdoors either, can walk more than 500 yards, on unevens

surfaces too.

4. Do you use your Helios braces always? (morning-evening) I can only use my

Helios for a short period, due to fatigue in my muscles. With Blue Rocker it is

morning-evening, no fatigue. When I take them off, I just return to my " normal "

gait immediately.

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

curbs, slopes)? No. With Blue Rocker: yes. My foot moves inside the shoe just a

tiny bit, but it is enough to compensate for the unevenesses. With Helios the

foot is " fixed " in a position.

6. What kind of CMT do you have, and when did it start? Possibly CMT 4F,

Dejerine Sottas disease, started when I was 2 years old, slow progresion.

Blue Rocker is very stable. I can stand for more than 5 minutes without support.

Yes, you lean on to them, like the Helios, but they are not so rigid, so you

can't lean as much as with Helios. Best thing was that I tried them on, and I

could walk immediately, no problem getting used to them. It takes 2 minutes to

put them on, they are inside the shoe, so it's like putting a shoe on. I also

wear a custom made plastic foot insert in the shoe. Blue Rocker comes in

standard sizes. I would really like to recommend them, they are great! I have

been walking a lot more lately. It is easy when I can stand still to look for

cars before I cross a road. Yesterday my neighbour asked me to come in, and I

walked through her uneven lawn. Normally I would have taken the garden path.

Beata

 

[Guest guest]

I had the Toe-Off's many years ago. Do you know how these compare to those?

Jackie

Re: Survey - Helios braces

Thanks for your answers Jackie and Kay!

My answers would be:

Helios Survey

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

2. How far can you walk outdoors? (without braces or aids) B. 100-500 yards

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

Normally no, but if I walk outdoors, I need support. I bought a shopping cart,

called BagBuddy (Overstock.com) which is like a lightweight kid's buggy, easy to

fold, but enough support for me to walk. When I use my new Blue Rocker braces, I

don't need any support outdoors either, can walk more than 500 yards, on unevens

surfaces too.

4. Do you use your Helios braces always? (morning-evening) I can only use my

Helios for a short period, due to fatigue in my muscles. With Blue Rocker it is

morning-evening, no fatigue. When I take them off, I just return to my " normal "

gait immediately.

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

stones, curbs, slopes)? No. With Blue Rocker: yes. My foot moves inside the shoe

just a tiny bit, but it is enough to compensate for the unevenesses. With Helios

the foot is " fixed " in a position.

6. What kind of CMT do you have, and when did it start? Possibly CMT 4F,

Dejerine Sottas disease, started when I was 2 years old, slow progresion.

Blue Rocker is very stable. I can stand for more than 5 minutes without

support. Yes, you lean on to them, like the Helios, but they are not so rigid,

so you can't lean as much as with Helios. Best thing was that I tried them on,

and I could walk immediately, no problem getting used to them. It takes 2

minutes to put them on, they are inside the shoe, so it's like putting a shoe

on. I also wear a custom made plastic foot insert in the shoe. Blue Rocker comes

in standard sizes. I would really like to recommend them, they are great! I have

been walking a lot more lately. It is easy when I can stand still to look for

cars before I cross a road. Yesterday my neighbour asked me to come in, and I

walked through her uneven lawn. Normally I would have taken the garden path.

Beata

[Guest guest]

I can stand about 2 minutes with difficulty without support, when not in my

braces.

 

I cannot walk more than 100 yards without braces, before fatigue sets in, I trip

and my balance is very poor.

 

I had the custom composites braces before the Helios.  The custom composites did

not correct my feet or help me with balance.

 

I have CMT type 1.

 

With the Helios I can walk for about 3 miles without any problems. I can stand

with the Helios without holding on to anything for as long as I want.  As far as

uneven ground, I go hiking, and grass is no problem.  Before I got the Helios I

spoke with a woman in Atlanta

who told me that she hikes with the Helios, and how uneven ground became easy

with the Helios. 

 

One of the Helios users, who participtes in marathons, had the Blue rockers

before the Helios, and the Blue Rockers did not work for him.  I read about his

story, his name is Steve Witt.  He was in the CMTA newsletter.  

 

For me, the Helios was life changing, as I have said before, they gave me my

legs back.

 

 

Shelia 

[Guest guest]

Dear Beata,

 

I just recently answered your survey on the Helios as you posted.  I am curious

about something.  I knew another CMT'er in my support group who had 3 pairs of

Toe Off braces which are made by the same company as the Blue Rocker.  I only

know about this because a local orthotist spoke at our group, and told us the

after the Toe-Off breaks 3 times, they are no longer warrantied.

That's why I tried the custom composite first (unfortunately it did not work for

me as I answered in your survery). The orthotist told the group that there was

also a blue rocker, which was basically a beefed up Toe-Off. What stuck out in

my memory, is that we were told that the Blue Rocker was manufactured in Sweden,

and that was where we had to contact if we had a serious probloem with the

Toe-Off/Blue Rocker. 

I looked at your earlier posts, and noticed that you are from Sweden.

I appreciate that you are happy with the Blue Rocker, but I am curious, and if

you can please answer this honestly... " Do you work for the Blue Rocker people in

Sweden, or are you affiliated with them in any way " ? 

I am not accussing you, but this survey kind of sounds like something a

corporate entity would put out ther in order to market...as I said, I am very

curious.  I have not seen a survey like this before in the forum, and it

is curious to me that you are from Sweden, and the Blue Rocker is from Sweden.

 

Thanks,

Shelia     

[Guest guest]

Hi Sheila,

Thanks for your survey answers!

No, I don't work for the company that sells Blue Rocker braces! I am a

biologist, and I work for a dental biotech company as a researcher.

Maybe they know more about how to fit Blue Rocker here in Sweden since it is

manufactured here, I mean shoes, shoe inserts etc. I tried Blue Rocker with my

normal shoes first, and that was no help, but with the custom made wider

shoes they are great! I am a positive person, so that's why I might sound like a

sales person, although I am not! Yesterday I told a friend about " a magic ball "

I just bought (it replaces washing agents in the washing machine). I was so

positive about it, that she became more and more sceptical... Well, that's how I

am.

I am glad to hear that you like the Helios braces. Since you can stand a bit

longer than me without them and without support, it might be the thing, that

stronger muscles are needed for optimal benefit. I am not going to ask if you

work with the company that sells Helios braces though...

Beata

 

[Guest guest]

My answers would be:

Helios Survey

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

2. How far can you walk outdoors? (without braces or aids) B. 100-500 yards (but

very slowly).

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

No

4. Do you use your Helios braces always? I use them all the time. The only time

I don't use them is when I'm in the house (even though I probably should).

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

curbs, slopes)? Yes. They actually have 2 types of Helios. I walk on uneven

surfaces all the time. I worry about them breaking because of past experiances

with other braces, but there is a little give (no a lot) in the helios I have.

It was more expensive to get these though, but well worth it.

6. What kind of CMT do you have, and when did it start? I think type 1A but have

not taken the blood test yet. It probably started when I was 16 but I was not

diagnosed until I was 23.

[Guest guest]

Hi Beata,

 

  Well I really do not know about what muscles you need for optimum beneift.  I

did check with the people at Helios about one of their patients on their

website, a woman with CMT, where they have a video clip of a before and after. 

I immediately thought she must have really strong muscles because she walked so

well.  I learned after investigation, that she has no muscles working below the

knee at all.  Just because I can stand longer than you, does not mean that I

have strong muscles, that is a wrong assumption, as I am pretty weak without my

braces.  I feel, and so does my physician, that my legs have become stronger

over time since I am wearing the Helios.  If your point is that some things work

better for different people, I agree.  Concerning me asking you if you work for

the people at Blue Rocker, you have to remember, " you are the one creating

surveys on this list " . It sounds like a typical product survey that a

corporation uses, as I

have worked in the corporate world with many different types of products, and

it is a typical type of survey with an a.b.c. type of answer: which is

structured for a certain response.  But if you say you are not affiliated with

the Blue Rocker people, I believe you.   So you market a magic ball  to

people...a magic ball sounds good! LOL

 

Shelia  

From: Beata Boo <beataboo@...>

Subject: Re: Survey - Helios braces

Date: Wednesday, April 1, 2009, 9:39 AM

Hi Sheila,

Thanks for your survey answers!

No, I don't work for the company that sells Blue Rocker braces! I am a

biologist, and I work for a dental biotech company as a researcher.

Maybe they know more about how to fit Blue Rocker here in Sweden since it is

manufactured here, I mean shoes, shoe inserts etc. I tried Blue Rocker with my

normal shoes first, and that was no help, but with the custom made wider

shoes they are great! I am a positive person, so that's why I might sound like a

sales person, although I am not! Yesterday I told a friend about " a magic ball "

I just bought (it replaces washing agents in the washing machine). I was so

positive about it, that she became more and more sceptical... Well, that's how I

am.

I am glad to hear that you like the Helios braces. Since you can stand a bit

longer than me without them and without support, it might be the thing, that

stronger muscles are needed for optimal benefit. I am not going to ask if you

work with the company that sells Helios braces though...

Beata

 

[Guest guest]

Hi Beata,

I understand, I know you were sharing information in a positive and helpful

way, just keep posting !!

Lainie

[Guest guest]

Hi Holly,

 

I do not post that often, but when I read your post, it brought tears to my

eyes.

I went to Mitch too, and shared the same experience you had!  My walking has

become normal, and you are the first person I heard that was able to dance a

little with the Helios...I was able to do that as well.  I agree, Mitch does

want to help people, I never had a health care practitioner spend so much time

with me.  He has also developed a new type of Helios brace that is smaller, and

can be designed for different heel heights and styles. I am going to look into

those in the future, but right now I am just thankful for being able to walk

easily and with great confidence.  Thanks for the wonderful post Holly, it was

really refreshing to read your experience.

 

 

[Guest guest]

Hi Sheila,

I try to figure out why the Helios are not so good for me while Blue Rockers

are... The survey was an attempt, but you are right, I can't really draw any

conclusions, but I can guess and get ideas... Nothing wrong with that!

I go to a gym, and I use 2 weights on all machines, except thigh muscles, where

I use 4. There are12 weights as a maximum, and most people use 4-8, as I

noticed. My partner uses all 12! I have no idea how weak or strong I am, but it

is probaby on the weak side, but not too weak for training. I have got muscles

below my knee, and I use them. Maybe because I was riding my bike a lot when I

was younger (now moderately) or the disease progression is like this for me.

The idea for the survey came from a Swedish mail-group for parents that I am

also a member of. There are always surveys like: Do you cook a meal everyday for

your family? - things like that.

I am really grateful for all the answers, although I have not solved the puzzle,

yet. (why Helios is not that good for me?)

The magic ball is really great for washing! I forgot the name of the

manufacturer, so it is no attempt to commercialize it, but I have not used

washing powder for weeks, and the laundry is cleaner. My son's white socks, for

exempel, are totally white, altough he uses them at pre-school and they are

almost black underneat before washing!

My partner gives my new gait a 4 out of 5, where 5 is normal gait, and my gait

before was 2... I can keep up with his pace now. Yesterday we went to the

pedestrian street, and not only did I manage the cobble stones, but I did not

hold onto Mike, nor did I have to stare down to the ground. I could walk (on

cobble stone!) and look up, see people's faces! I have never in my life been

able to do that. I got CMT when I was 2 years old. I am a bit disppointed that

no one told me about braces before though. I found the Helios on the internet,

and the Blue Rocker via my physiologist, who tried to help me with managing

Helios first.

Bye

Beata   

 

[Guest guest]

I have discussed the Helios with several people.The issue becomes when you are

weak from the hips on down.

If you just have foot drop and mild quad weakness, these braces are great. I

have had them since summer 2007

and i still cannot manage to walk in them without assistance from another

person.I have fallen in them

many times. Although I can stand for up to an hour (which is a wonderful think)

I can't take steps without my

knees actually giving away as my quads have very minimal muscle and my hips are

extremely weak, making

it heavy to lift my feet and unsteady. I have had AFO's, Toe-Offs and even

KAFO's for the last 25 years, so i have had

some experience. The woman on the video is ONLY weak from the knee down. It was

deceiving to me.

I appreciate the survey being put out there, because for a while there i thought

i was the only one with this

problem and i felt very defeated after spending $12,000 + travel.

I too am the type of person that when i see or use a product that I am excited

about, i want to tell everyone

about it that i think it will help. I think that is what Beata was doing,

because when you feel defeated, it sure

is a glorious feeling to find the walking product that improves your life. She

is not the first person on this forum to

be excited about the Blue Rocker braces. Years ago, I met the man who invented

the Liberty cane and he asked

me to try it out and let him know what i thought. I was so excited about this

cane that i volunteered to go to

the Dana and Reeve trade show (for free) and help show it to

physical therapists and disabled who

came through the show, and no i never worked for him, just wanted to share his

product.

Although i will not be trying them for fear of them breaking just likethe

Toe-Offs, if i am still unable to walk in the helios after my next round of

physical therapy, then I too will be looking for an alternative.

Jackie

Re: Survey - Helios braces

Date: Wednesday, April 1, 2009, 9:39 AM

Hi Sheila,

Thanks for your survey answers!

No, I don't work for the company that sells Blue Rocker braces! I am a

biologist, and I work for a dental biotech company as a researcher.

Maybe they know more about how to fit Blue Rocker here in Sweden since it is

manufactured here, I mean shoes, shoe inserts etc. I tried Blue Rocker with my

normal shoes first, and that was no help, but with the custom made wider shoes

they are great! I am a positive person, so that's why I might sound like a sales

person, although I am not! Yesterday I told a friend about " a magic ball " I just

bought (it replaces washing agents in the washing machine). I was so positive

about it, that she became more and more sceptical... Well, that's how I am.

I am glad to hear that you like the Helios braces. Since you can stand a bit

longer than me without them and without support, it might be the thing, that

stronger muscles are needed for optimal benefit. I am not going to ask if you

work with the company that sells Helios braces though...

Beata

[Guest guest]

Hi Jackie,

 

I am not sure if you are writing directly to me, but it looks like it is in

response to my post.  Well anyway,I read Holly's post and it sounds like she has

weak quads as well.

I found nothing about the girl in the video deceiving.  When I asked about her

condition, I was given an honest answer about her condition, and was offered to

contact her. It sounds like you are going through a lot.  Why don't you contact

Mitch Warner, I am sure he would help you.  I find him very easy to talk to.

 

Shelia