Bioness Story on Today Show

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For Joanna

Postby Dawk » Thu Mar 12, 2009 5:48 am

Hi Joanna

Did you ever try muscle relaxants (Baclofen?) before the Bioness? Did you ever try an AFO? I am asking because my neurologist is telling me to go that route and not the Bioness. To be fair to him, I'm in Canada and Bioness is not available up here.
Thanks
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Postby JenHow » Thu Mar 12, 2009 2:48 pm

Hey Everyone

Dawk I will first respond to your question because I think I have some info for you. I have taken Baclofen for spasticity. The only problem with Baclofen is that it can make you very tired - not good with MS as you know, but it does help for spasticity. My Dr. recommended the Baclofen pump (implanted device) because it doesn't make you tired but you get the benefit of helping your stiffness - but I wasn't willing to do that. (I'm chicken! :D ) However, there are many people that take Baclofen and love it. I just can't. I've never had an AFO. PM me if you want to talk more about that!

Anyway, I have now tried both devices - the Walkaide and the Bioness. I went into both trials with no preference whatsoever. I just want something to help my foot drop so my body doesn't have to work so hard!

I personally responded the best to the Bioness, although both worked for me. I felt the Bioness made me more stable and I felt stronger with it. Here are the pros and cons for both:

Pro
Stable cuff to hold the electrodes in place - Bioness
Better ability to be programmed to my specific gait issues (scissor gait and hyper extended knee)- Bioness
Easier to put on initially - Bioness
More surface area on leg for electrode placement - Bioness
Cuff seems to be made better so that it wears better - Bioness
Can go backward and side to side steps - Bioness
One piece design - Walkaide

Con
Higher cost - Bioness
Three pieces (must always wear shoes) - Bioness
Smaller cuff holds unit with velcro and could come off?? - Walkaide

Overall, I have to go with what helps me the best and based on first impressions, I feel the Bioness will help me the most. I'm not Walkaide bashing but the Walkaide kinda felt more like a prototype where the Bioness felt better made and more thought out in terms of the design - if that makes sense. I will need to discuss this with my Dr. then he will need to write a letter to my insurance and obtain prior authorization to see if they will cover anything. If anyone has any suggestions with that let me know!

Anyway, this is just my thoughts now. I need to think about it some more. I was quoted $4600 for the Walkaide and $6200 for the Bioness. It's a big step.

If I think of anything else later, I'll post it.

Jen
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Looking for Info

Postby Pebbles » Thu Mar 12, 2009 10:57 pm

Hello, all,

I have been looking for a forum that was actively discussion the Bioness device.

I was evaluated for this device and they believe it could work for me. However, at the evaluation appointment, the shocks really bugged me.
I really see how the device could help, so I want to go for it.

I just need some recommendations on how to handle the shocks.

Is anyone using it? If so, how did you get used to the shocks?

I wonder if it bothered me more that day than it will in the future. When they were looking for the right spots for me to respond to the device they triggered my spasticiy.

Just looking for information.

Thanks for your assistance.
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Postby mrhodes40 » Fri Mar 13, 2009 3:48 pm

Well, I am not bashing him, but it's like you said, he isn't familiar with it, so why doesn't he look into it, before saying it won't work....I am concerned when people, not just doctors, say no, because they don't know. Where is that going to get us?


this was not directed at me but I want to add yes indeed. My neuro told me no don't get it you are too spastic it won't work for you. The reahb doc said no once your foot is bent up then the knee will automatically bend better, its a physoilogic fact of the way the body is wired.

But based on the Neuro advice I have missed a whole year of using a device that might make me stronger. I am now resentful of his assurance that it would not work when the reahb doc has a good reason to say it will. I responded with my bonehead comment because I was projecting my own situation onto yours Dawk

So I tried the walkaide we are having trouble with getting the nerve with the electrodes, though we can make it work great with the hand held stimultor they test with first. The proof of concept is that the hand held has a vigorous response that does not bother me, but the problem is that strong tingle feeling of the walkaide makes me have an involuntary spasm but did not move my foot. She is going to consult someone and recalibrate it for me in a week or so. I feel she is new and having trouble with finding the electode placement angle rather than it is not going to work. Man, that foot bump I got was great from the handheld! If I can have that happen as I walk that would help a whole lot.

I still may end up trying the bioness....
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Postby CureOrBust » Fri Mar 13, 2009 5:45 pm

mrhodes40 wrote:So I tried the walkaide we are having trouble with getting the nerve with the electrodes, though we can make it work great with the hand held stimultor they test with first.

Man, that foot bump I got was great from the handheld! If I can have that happen as I walk that would help a whole lot.

I still may end up trying the bioness....
Remind me again why you only "may" try the bioness, cost?, when it sounds like it is exactly what you want (ie the positive "button" press when your heel lifts up). Maybe its not the nurse, but its just that you walk "funny". :)
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Bioness (cont'd)

Postby Dawk » Sat Mar 14, 2009 5:38 am

mrhodes40

Your experience is very valuable to hear about and it sounds like you are quite right to have a bit of an edge on the topic. I am at the point where I am probably going to try taking the muscle relax drug first. My pharma said I'd know with the first pill how it affects me. I guess if you think about it, it isn't so strange that one branch of medicine, trained to treat things in a certain way, wouldn't be resistant to new ideas. For us the user, of course, we just want the next great thing. But my neuro guy said that is a challenge for him. Remember the drug they came out with last year that killed a few people? He said he had to talk clients out of trying it even after they knew. And there is one that was originally designed to treat cancer that actully causes luekemia in some people.

This site is great because it gives us a chance to discuss the issues.

Good luck.
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Postby Sharon » Tue Mar 17, 2009 7:14 pm

Marie -
The proof of concept is that the hand held has a vigorous response that does not bother me, but the problem is that strong tingle feeling of the walkaide makes me have an involuntary spasm but did not move my foot. She is going to consult someone and recalibrate it for me in a week or so. I feel she is new and having trouble with finding the electode placement angle rather than it is not going to work. Man, that foot bump I got was great from the handheld! If I can have that happen as I walk that would help a whole lot.


A couple of suggestions:

My WalkAide technician had to "remold" the cuff to fit my leg - she heated the plastic and molded it to fit my leg better. Also, she added a small styrofoam disk the size of the electrode to elevate the back electrode. (hope this makes some kind of sense!!) If you need more info, PM me and I will give you the name of my technician here in Denver.

Sharon
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My experience with my Walkaide

Postby Lazarus » Wed Mar 18, 2009 7:57 am

I like my Walkaide a lot. I start the da with a baclofen to uncurl my toes and the walkaide works well.

The biggest problem I have after the last month relates to the inexperienced technicians. The original person who programmed mine came from the Innovative Neurotronics home office in Boston. Boy was I lucky! But the technician who transferred the electrodes to the cuff I bought put them slightly off the mark and my walkaide did not work!

Thanks to someone on this sight i understood the problem and went back to the technician--who really is inexperienced.

Even today I am still fiddling with exact cuff placement but now I know what to look for. At my neuroogists's the other day I walked 20' down the middle of a corridor with no walker and without wall walking or tripping....and did it in 8 seconds.

My neurologist was excited--he had never seen one before. (He said the same thing about my Segway. Has anyone else used one of those?)

I am doing a full dose of novantrone on friday and we hope it works as it did a year ago and makes my legs strong. Then maybe I'll be running with my Walkaide!
Linda
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Postby mrhodes40 » Wed Mar 18, 2009 9:11 am

Cure said
Remind me again why you only "may" try the bioness, cost?, when it sounds like it is exactly what you want (ie the positive "button" press when your heel lifts up). Maybe its not the nurse, but its just that you walk "funny".

Who're you calling funny!! :lol: If this girl after consulting her resources can't get the nerve then I will go see the biones team...it's a long drive though and not convenient for return visits so the walkaide is preferable.

Sharon, y0u mentioned the raised electorde and I think that is exactly the stuff, if she really presses with the handheld we get the nerve but with a soft touch, it just tingles near the knee and doesn't go "down". I thikn we are picking up here on the variety of skill levels in people sellling these....

Dawk, my doc won't prescribe novantrone at all himself. These are pretty toxic drugs!
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Baclofen

Postby Dawk » Wed Mar 18, 2009 9:27 am

Hi MR

I am just starting to try Baclofen today. Will let you know how it works. If it does reduce foot drag then I won't try Bioness. But if it doesn't...
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Postby Sharon » Wed Mar 18, 2009 10:33 am

I thikn we are picking up here on the variety of skill levels in people sellling these....


I agree with you - it is like anyone else though whether it be a WalkAide technician or a dentist or even a neurologist :wink: I have learned to be my own patient advocate.

Again, let me know if you want your technician to contact mine - she has said she is more than willing to help anyone.

Sharon
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Bioness v. Walkaid

Postby GeorgeCT » Mon Apr 20, 2009 8:08 am

Hello Everyone: I see there haven't been any new posts in a while but I want to share my experiences because this forum has been helpful to me.
After trying both the Ness L300 and the Walkaide in March, I decided to go with the Ness L300 and had my fitting on Friday, April 17. So, I am on my fourth day with the device. Other people's input has been helpful to me over the last 6 weeks so I thought I would reciprocate as I get acclimated to the Bioness device. According to the instructions my clinician gave me, I will be ramping up with the device over the next weeks, after which I will be able to wear it all day.

First impressions as an owner are consistent with the first impression I had when I went for my trial -- the device works amazingly well, and instantly, although it does take some getting used to.

I took my first Bioness-assisted walk on Saturday with my wife. Although I don't use a cane in my daily life at the office, I always take a cane when I go for a walk. This time I didn't. As hoped, I didn't need one. At first, I was having difficulty getting my stride just right with the Bioness and was a little discouraged that my right foot still seemed to drop the way it did without the device. After about 1/2 mile, though, I switched it off. What a change! That's when I really realized how much the device helped. With the device off, I quickly became fatigued without the assistance of my cane. On Sunday, I took another, slightly longer walk. Same thing. I can walk a mile without a cane and don't need one! Quite amazing! Also, I am finding that I am getting used to the constant zapping of my leg. I suspect that in time I will hardly notice it.

That's all for now. More reports later, including why I picked Bioness over Walkaide.

By the way, I have primary progressive MS. I turned 54 last week. I was diagnosed in 2002 but probably have had symptoms (most noticeably a limp) since 1995-97. I am an attorney working full-time.

George
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Postby peekaboo » Mon Apr 20, 2009 8:42 am

is there any relative cost difference between the two types? I know they are both expensive...
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Postby GeorgeCT » Mon Apr 20, 2009 9:57 am

Hi peekaboo,

As others in this discussion have mentioned, the Bioness device is more expensive, about $6,200 versus $4,700. Even though $1,500 is a lot of money, both devices are so expensive that I agree with the people who say that you should pick the device that works best. In my case, that was the Bioness. At least, that's what I thought after evaluating each one.

Bioness lets you rent the device for up to four months at $500/mo, with 100% of the rental applied toward the purchase if you decide to buy it. That's what I decided to do after trying both. But, to be certain that I have made the right choice, I am going to try the Walkaide in a few weeks. If I decide at that point that it works better, I can return the Bioness and get the Walkaid instead. I'll be surprised if that's the case, however. The gait sensor (foot piece) in the Bioness device seems to time the electric impulse better (at least for me) than the corresponding system in the Walkaid, which senses when the leg is tilted.

Hope this helps.

George
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I have the walkaide

Postby Lazarus » Mon Apr 20, 2009 10:24 am

I did not try the Bioness as the guy never called me back and I am an impatient one. When the Walkaide worked wonders during my trial week, I bought it. (I used the HaNGER facility in Vernon)

I am running a 5 acre organic farm with 2 big greenhouses. When I get tired my legs won't hold me up--even the leg with the Walkaide. I've gotten so used to how much more I can do that I forget what I can not do! When my leg gets tired the Walkaide simply stops lifting it. But when it does work....I can dance!
Linda
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