Walkaide

[Guest guest]

Karon,

Do some research on it. On the WalkAide website it says

People presenting with the following peripheral nervous system conditions will

NOT benefit from WalkAide:

Secondary complications of back, hip or knee surgery

Traumatic accidents to the leg

Sciatica

Peripheral neuropathy *

Spinal stenosis

Post-polio syndrome

Guillain-Barre

So, those of us with CMT/Peripheral Neuropathy should be aware of this.

http://www.walkaide.com/products/medicalcommunity/indications.html

As for your back pain, have you been evaulated by an orthopedist specializing in

the spine? I ask this because back pain can be caused from a multitude of

conditions - example, spinal stenosis, disk herniation/rupture, even kidney

problems. If you haven't seen a specialist and ruled out every possible back

diagnosis, your $ may be better spent that way, and insurance would accept it.

Just my thoughts from my personal experience with back pain.

There are about 13 posts in our Archives you may want to take a look at too.

Gretchen

[Guest guest]

Hello Gretchen,

Hope you are well....I haven't posted for quite a while but I do try to keep up

to date with all of your helpful information. I underwent the tests to see if I

could benefit from the Walkaide (I was really excited that this was going to

help) unfortunately my muscles had absolutely no response. The Doctor doing

the testing was extremely patient as he also hoped it would help. It was very

disappointing but he told me he had other patients with CMT and they also had

not been candidates.

Just wanted to let you know how much I appreciate all that you do.

Warmest wishes,

[Guest guest]

I agree with you Gretchen. My neurologist is sure I have CMT so to hear that

this device will not work for me IF I have CMT has really messed me up.  When I

got the signal I didn't know what to think.I am going back to her and ask if she

knows of a reason why this could have happened when I put on the device.  It is

a HUGE amount of money for something that shouldn't work for me.

My back issues are frustrating because I went in for a complete set of MRIs two

years ago. With the exception of a degenerated disc in the L4-5 area everything

seemed fine, except they did find two ovarian cysts and seven fibroids, which

had me focused on those issues for a while, instead of my back and neck.  The

technician was so concerned about the ovarian spots (at that time they were not

sure what they were) that I was freaked out about those and all attention was

directed to that area of my body instead of the back and neck pain.

I am in the meantime going to find a good orthopedic specialist to get to the

bottom of this.  However, I feel sure that because my gait is off that my back

is suffering.  I have a severe left foot drop and my right side is now becoming

affected, too.  Is foot drop on both sides common to CMT? I also have noticed

that my hips are not level with one another so I am worried about that, too.

Up until about a year ago my CMT didn't really stop me and if it did for a few

days now and then, I just kept going. For three years I was told I had MS and

took injections daily to stop the progression. When I found out that I did not

have MS, I was SO excited I didn't think CMT was that bad. Until now. No one in

my family has it so I am not sure how I got it....guess I was the first.

Anyway, I will definitely not be dropping thousands of dollars on these devices,

when my back issues hopefully will be resolved soon. I just want to know the

cause so I can get on with my life. After being misdiagnosed once and

consequently being screwed by insurance as a result, I wlll be careful and

skeptical when I hear about products like WalkAid.

I love  this website because I have the benefit from hearing others' experiences

with CMT and people that know more about this disease than most of the doctors I

have been to.

THANKS!!

Karon

[Guest guest]

My guess would be the Walk Aide might work for some of us with CMT since the

peroneal nerve is not shot ike it might be in a stroke victim or a person with

CP, but it's not properly sending signals and or the brain-leg connection isn't

quite right.

So, if the signal can get through it might stimulate things enough to get the

muscles to work. We have to also consider, however, that the muscles arr

progressively weakening and the nerve may be getting worse, so it may not work

as a permanent solution.

I agree anyone looking into this should be very cautious in making sure it will

work and work long enough top be worth the cost.

Lanman

[Guest guest]

,

Did the doctor say if there was anyone with CMT that the WalkAid DID work on?  I

know I cannot be the only one with CMT that has received the signal.  I will

probably try it on a trial basis.  The WalkAid does not offer a trial, if you

get the signal then it will work, according to the manufacturer.  However, a

competitive product that works on Blue Tooth (Biogenesis) will let you try it

for a month for $250. So, what have i got to lose but $250.....I get the signal

and IF it improves my drop foot then it will be a miracle.

To be able to walk with out slapping my left foot on the floor will be such a

relief.

Karon

[Guest guest]

Hi Karon,

The Doctor that did my testing did not have any patients with CMT that had been

able to use the WalkAid but I'm sure that doesn't mean it couldn't work. As we

know, severity of symptoms of CMT are different for each of us. If it helps you

I would certainly go for the trail.

Good Luck,

[Guest guest]

I agree with Gretchen about seeking help with your back pain. I believe that a

neurosurgeon is preferable to a orthopedist. The orthopedist thinks first of

structure and and then nerves. The neurosurgeon thinks first of nerves then

structure. I prefer the latter, but I'm sure others don't agree. Of course, I

believe a physiatrist/rehabilitation physician should be the gatekeeper of CMT

care, not a neurologist.

I have lived with back pain since 1969 and after being totally bummed out for

months, like St. on the road(though not for the same reason) I discovered

an epiphany that still rings true.

I realized that no matter what treatment, or what magic drug I take, or whatever

I do, I will be in pain. Period. What is important is how I respond. I realized

that I could stay at home doing nothing and be in pain, or I could go out and do

something and be in pain.

Since that understanding I became a licensed Soccer Referee working high school,

college, and professional games I worked at the highest level refereeing league

championships in the US and Canada. I became a licensed baseball umpire working

both amateur and professional leagues. I started riding horses and began

foxhunting(no PETA, we didn't kill the fox) and jumping 3 and 4 foot fences.

During the 25 years between my back issues and the very late appearance of my

CMT issues, I led a very full life, not to say that there were days and weeks

when I couldn't do very much due to increased pain. Every time the pain receded

to the " background " level I lived with and allowed me to continue living.

When CMT stole my leg strength, I couldn't keep up my vigorous activities. When

I couldn't feel where my foot was located in a stirrup, I had to stop riding. I

realized that I now had 2 issues to accept -- pain and fatigue. I was

experienced in working with pain. I needed to understand fatigue and evolve a

strategy to live as full a life as possible.

My answer is one day of activity, and one day of rest. I walk everywhere every

day and that can't be changed. I do deep-water exercise (after walking 3/4 mile

each way to the gym) 3 days a week.

On other days, I plan no activities more strenuous than walking. I don't swim if

I know I have a strenuous day coming up.

Well it works for me -- so far. Others may need other accommodations. What is

important is acceptance of what is, not what was.

--Larry

[Guest guest]

I agree with Gretchen about seeking help with your back pain. I believe that a

neurosurgeon is preferable to a orthopedist. The orthopedist thinks first of

structure and and then nerves. The neurosurgeon thinks first of nerves then

structure. I prefer the latter, but I'm sure others don't agree. Of course, I

believe a physiatrist/rehabilitation physician should be the gatekeeper of CMT

care, not a neurologist.

I have lived with back pain since 1969 and after being totally bummed out for

months, like St. on the road(though not for the same reason) I discovered

an epiphany that still rings true.

I realized that no matter what treatment, or what magic drug I take, or whatever

I do, I will be in pain. Period. What is important is how I respond. I realized

that I could stay at home doing nothing and be in pain, or I could go out and do

something and be in pain.

Since that understanding I became a licensed Soccer Referee working high school,

college, and professional games I worked at the highest level refereeing league

championships in the US and Canada. I became a licensed baseball umpire working

both amateur and professional leagues. I started riding horses and began

foxhunting(no PETA, we didn't kill the fox) and jumping 3 and 4 foot fences.

During the 25 years between my back issues and the very late appearance of my

CMT issues, I led a very full life, not to say that there were days and weeks

when I couldn't do very much due to increased pain. Every time the pain receded

to the " background " level I lived with and allowed me to continue living.

When CMT stole my leg strength, I couldn't keep up my vigorous activities. When

I couldn't feel where my foot was located in a stirrup, I had to stop riding. I

realized that I now had 2 issues to accept -- pain and fatigue. I was

experienced in working with pain. I needed to understand fatigue and evolve a

strategy to live as full a life as possible.

My answer is one day of activity, and one day of rest. I walk everywhere every

day and that can't be changed. I do deep-water exercise (after walking 3/4 mile

each way to the gym) 3 days a week.

On other days, I plan no activities more strenuous than walking. I don't swim if

I know I have a strenuous day coming up.

Well it works for me -- so far. Others may need other accommodations. What is

important is acceptance of what is, not what was.

--Larry

[Guest guest]

Hi,

I have not tried WalkAide, although it seems to be a great new thing, definitely

worth testing... But I have had experience with " this should not work for you "

comments too. I had a nerve signal velocity test done in my legs, and the nurse

who did it was not the same as the one who asked me to enter the room. So the

examining nurse had not seen me walk. After the test, she asked me where my

wheelchair was. I said I don't have one. She said: But you can't walk, you have

no nerve signals. So I walked and obviously I could do it. That made her angry,

she really wanted to be right. Nobody can tell how your nerves are affected, so

trying out (things like WalkAide) is the only way to know for sure if it works

or not.

Beata

________________________________

From: " kedleson@... " <kedleson@...>

Sent: Sunday, April 19, 2009 6:48:01 AM

Subject: Re: WalkAide

I agree with you Gretchen. My neurologist is sure I have CMT so to hear that

this device will not work for me IF I have CMT has really messed me up.  When I

got the signal I didn't know what to think.I am going back to her and ask if she

knows of a reason why this could have happened when I put on the device.  It is

a HUGE amount of money for something that shouldn't work for me.

My back issues are frustrating because I went in for a complete set of MRIs two

years ago. With the exception of a degenerated disc in the L4-5 area everything

seemed fine, except they did find two ovarian cysts and seven fibroids, which

had me focused on those issues for a while, instead of my back and neck.  The

technician was so concerned about the ovarian spots (at that time they were not

sure what they were) that I was freaked out about those and all attention was

directed to that area of my body instead of the back and neck pain.

I am in the meantime going to find a good orthopedic specialist to get to the

bottom of this.  However, I feel sure that because my gait is off that my back

is suffering.  I have a severe left foot drop and my right side is now becoming

affected, too.  Is foot drop on both sides common to CMT? I also have noticed

that my hips are not level with one another so I am worried about that, too.

Up until about a year ago my CMT didn't really stop me and if it did for a few

days now and then, I just kept going. For three years I was told I had MS and

took injections daily to stop the progression. When I found out that I did not

have MS, I was SO excited I didn't think CMT was that bad. Until now. No one in

my family has it so I am not sure how I got it....guess I was the first.

Anyway, I will definitely not be dropping thousands of dollars on these devices,

when my back issues hopefully will be resolved soon. I just want to know the

cause so I can get on with my life. After being misdiagnosed once and

consequently being screwed by insurance as a result, I wlll be careful and

skeptical when I hear about products like WalkAid.

I love  this website because I have the benefit from hearing others' experiences

with CMT and people that know more about this disease than most of the doctors I

have been to.

THANKS!!

Karon

[Guest guest]

Sounds very interesting. I will research further. Thanks for the info.

Cheers,

gigi

From: kedleson@... <kedleson@...>

Subject: WalkAide

Date: Saturday, April 18, 2009, 6:37 PM

Has anyone tried WalkAide? I was tested for it and it worked on me, even though

Scope Orthotics said if I had CMT my neural pathway would probably fail to

receive the signal. They were shocked. It is a device that is placed under your

knee and it is for people who suffer from drop foot. It acts like your brain in

that it sends an electrical current through the tibial area on the front leg and

when one walks it shoots out a volt that makes the foot rise. It is not painful

but will definitely take some getting used to. It acts like a part of the brain

that sends messages from the nerves to the muscles. Somewhere along the way, in

people who have foot drop,

the message gets lost.

It was designed for stroke victims, people with MS, and those who have suffered

trauma of some sort. The fact that the signal came through for me is a mystery.

The downside of this amazing device is that it is super expensive (approx.

$5,000) and insurance does not cover it. There is a rival device made by

Biogenises(sp. ?) which works by blue tooth. It is $7,000 but you can have it

for a month on a trial basis for $250.00.

I am being fitted for that one next week because I feel it is worth

spending $250.00 to see if it truly works. My biggest complaint with CMT is back

pain that I live with on a daily basis, due to my gait.

It is NOT a cure...one has to wear it when walking and it runs on a AA battery.

Anyway, I was just wondering if anyone knows anything about this type of

orthotic. WalkAid can be worn barefoot since it is placed under the knee on a

velcro strap. The other device has a heel device, so a shoe must be worn...no

sandals. BUT neither require a bigger shoe or restricts one to wearing a tennis

shoe only.

Karon

[Guest guest]

That's funny and so true. One year when I went in for a physical there was

a new nurse and she told me I didn't look like someone who has cmt, as she

gave me a strange look Guess she didn't notice how hard it was for me

walking and trying to keep up with her when she directed to the room.

In a message dated 4/20/2009 11:44:33 A.M. Central Daylight Time,

beataboo@... writes:

Hi,

I have not tried WalkAide, although it seems to be a great new thing,

definitely worth testing... But I have had experience with " this should not

work for you " comments too. I had a nerve signal velocity test done in my

legs, and the nurse who did it was not the same as the one who asked me to

enter the room. So the examining nurse had not seen me walk. After the test,

she asked me where my wheelchair was. I said I don't have one. She said: But

you can't walk, you have no nerve signals. So I walked and obviously I

could do it. That made her angry, she really wanted to be right. Nobody can

tell how your nerves are affected, so trying out (things like WalkAide) is the

only way to know for sure if it works or not.

Beata

________________________________

From: " _kedleson@..._ (mailto:kedleson@...) " <_kedleson@..._

(mailto:kedleson@...) >

_@..._ (mailto: )

Sent: Sunday, April 19, 2009 6:48:01 AM

Subject: Re: WalkAide

I agree with you Gretchen. My neurologist is sure I have CMT so to hear

that this device will not work for me IF I have CMT has really messed me up.

When I got the signal I didn't know what to think.I am going back to her

and ask if she knows of a reason why this could have happened when I put on

the device. It is a HUGE amount of money for something that shouldn't work

for me.

My back issues are frustrating because I went in for a complete set of

MRIs two years ago. With the exception of a degenerated disc in the L4-5 area

everything seemed fine, except they did find two ovarian cysts and seven

fibroids, which had me focused on those issues for a while, instead of my

back and neck. The technician was so concerned about the ovarian spots (at

that time they were not sure what they were) that I was freaked out about

those and all attention was directed to that area of my body instead of the

back and neck pain.

I am in the meantime going to find a good orthopedic specialist to get to

the bottom of this. However, I feel sure that because my gait is off that

my back is suffering. I have a severe left foot drop and my right side is

now becoming affected, too. Is foot drop on both sides common to CMT? I

also have noticed that my hips are not level with one another so I am worried

about that, too.

Up until about a year ago my CMT didn't really stop me and if it did for a

few days now and then, I just kept going. For three years I was told I had

MS and took injections daily to stop the progression. When I found out

that I did not have MS, I was SO excited I didn't think CMT was that bad.

Until now. No one in my family has it so I am not sure how I got it....guess I

was the first.

Anyway, I will definitely not be dropping thousands of dollars on these

devices, when my back issues hopefully will be resolved soon. I just want to

know the cause so I can get on with my life. After being misdiagnosed once

and consequently being screwed by insurance as a result, I wlll be careful

and skeptical when I hear about products like WalkAid.

I love this website because I have the benefit from hearing others'

experiences with CMT and people that know more about this disease than most of

the doctors I have been to.

THANKS!!

Karon

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[Guest guest]

That is so interesting....as when I did the tests for the WalkAide the Doctor

could not believe he could not get a nerve signal and he asked me if I walked in

unaided....which I had (takes a lot of effort though).....he seemed amazed!

Warm wishes,

I have not tried WalkAide, although it seems to be a great new thing,

definitely worth testing... But I have had experience with " this should not work

for you " comments too. I had a nerve signal velocity test done in my legs, and

the nurse who did it was not the same as the one who asked me to enter the room.

So the examining nurse had not seen me walk. After the test, she asked me where

my wheelchair was. I said I don't have one. She said: But you can't walk, you

have no nerve signals. So I walked and obviously I could do it. That made her

angry, she really wanted to be right. Nobody can tell how your nerves are

affected, so trying out (things like WalkAide) is the only way to know for sure

if it works or not.

Beata

________________________________

From: " kedleson@... " <kedleson@...>

Sent: Sunday, April 19, 2009 6:48:01 AM

Subject: Re: WalkAide

I agree with you Gretchen. My neurologist is sure I have CMT so to hear that

this device will not work for me IF I have CMT has really messed me up. When I

got the signal I didn't know what to think.I am going back to her and ask if she

knows of a reason why this could have happened when I put on the device. It is

a HUGE amount of money for something that shouldn't work for me.

My back issues are frustrating because I went in for a complete set of MRIs

two years ago. With the exception of a degenerated disc in the L4-5 area

everything seemed fine, except they did find two ovarian cysts and seven

fibroids, which had me focused on those issues for a while, instead of my back

and neck. The technician was so concerned about the ovarian spots (at that time

they were not sure what they were) that I was freaked out about those and all

attention was directed to that area of my body instead of the back and neck

pain.

I am in the meantime going to find a good orthopedic specialist to get to the

bottom of this. However, I feel sure that because my gait is off that my back

is suffering. I have a severe left foot drop and my right side is now becoming

affected, too. Is foot drop on both sides common to CMT? I also have noticed

that my hips are not level with one another so I am worried about that, too.

Up until about a year ago my CMT didn't really stop me and if it did for a few

days now and then, I just kept going. For three years I was told I had MS and

took injections daily to stop the progression. When I found out that I did not

have MS, I was SO excited I didn't think CMT was that bad. Until now. No one in

my family has it so I am not sure how I got it....guess I was the first.

Anyway, I will definitely not be dropping thousands of dollars on these

devices, when my back issues hopefully will be resolved soon. I just want to

know the cause so I can get on with my life. After being misdiagnosed once and

consequently being screwed by insurance as a result, I wlll be careful and

skeptical when I hear about products like WalkAid.

I love this website because I have the benefit from hearing others'

experiences with CMT and people that know more about this disease than most of

the doctors I have been to.

THANKS!!

Karon

[Guest guest]

Beata,

You're probably using other muscles than the peroneal muscles in the lower legs

to pick up your legs. The muscles you're using are the ones where the nerves are

firing. I too have CMT and I'm sure that I use other muscles than what most

people do for walking. Also, I walked on a broken foot for over a month because

I didn't have health insurance. They say you have less feeling with the CMT but

I think it depends on where in the feet and legs.

Dawn

[Guest guest]

,

I recently got to try a friend's Walkaide ( I could not afford one  myself) but

we could not get my leg to move one bit with it. I'm sure I incorporate muscles

other than the normal ankle muscles when I walk. It DOES take a lot and Im

thankful I have a lot of energy; it's almost too much energy because I cannot

sleep either.

Dawn