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CagedBird

Does it realy work?

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I read every issue of stroke connections magazine and I get so happy when I see these new therapies and exercise robots and such that are out now for stroke survivors. Then I think to myself, well this probably wont work for me since I had my stroke almost 6 years ago. I asked a therapist at the therapeautic recreation room if the stuff actually works and she said most of it doesnt but it doesnt hurt just trying. Im at the point where I will try aything to get back to normal a bit. I am looking for something that will exercise my fingers but more than anything, I will be satisfied if I can just get my arm to straighten out when I stand.

Browsing through the post, I think I will read the blog about the saeboflex before I start asking a lot of questions. I try to read first then ask questions later because I know newbies like me can be a pain til I get the hang of the site :huh: bare with me :im stupid:

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Katrina,

 

You are NOT stupid; the only stupid question is the one that remains unasked. Having that said...back to your question about new therapies. Just as a stroke affects people differently, same thing applies to the therapy programs. People respond differently to various therapies depending on the nerve damage and muscle weakness.

 

I have heard too there can always be some type of progress. The important thing is to keep working the affected limb(s). We can never be what we used to be but you can be a better me. It does not hurt to try new ideas as long as you can financially absorb what your insurance will not cover.

 

There is also the possibility of being accepted into trial programs.

 

Keep reading, exploring, and asking. I know you will receive responses

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katrina, donna is right, always ask questions, and never think you are a pain here, you don't know unless you ask. read george lesleys blog, he has tried alot of different therapies. i have also been considering the saeboflex but i am still reading up on it. so never be afraid to ask, thats why we are here.

 

k.anderson

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Katrina,

Feel free to post any and every question you have!As for the saeboflex I have one and I believe it can be a wonderful rehab tool, with it on I can exercise my hand by practicing grasp and release exercises,The only bad thing with it I can not put it on by myself, and it is very time consuming,but its worth a shot, as for me with it on like I said I can pick things up, but as soon as I take it off I'm back to not being able to use my hand, but I also must admit I was not able to dedicate as much time to using it as I should have due to both my wife and I both have jobs,best of luck to you in whatever rehab path you take.

God Bless You,

Tom

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Don't be afraid to ask questions.. someone may remember a post or blog to steer you for more information.

 

Sometimes there are free "trials" in certain areas of the countries you can sign up and join. I remember a few months back there was one in Boston. I heard of one in Seattle and sent the info to another member.

 

I know in the Blogs there are a couple members also going thru the interview process for another trial. It is a brain implant to help with movement.

 

I will see if I can find them and send you a PM to their blogs.

 

 

 

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Katrina,

My husband (Patrick) has a saeboflex and went to therapy with it twice a week for about a year. There is no doubt in our minds that it did help, but by the same token it is not a miracle worker. It's just a tool in the OT's arsinal. In my opinion, the more tools, the better! As long as you have the desire and willingness to keep working that hand, it can only get better!

 

Take Care,

Kristen

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We asked about the saeboflex for Rachel. She wasn't a candidate yet. You have to have some movement in your hand and arm. She has none. We also asked about another clinical trial and that was the use of stimulation therapy. You also had to have some movement for that. One day hopefully, she can get involved. Never give up looking for clinical studies and asking questins

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Hello,

I just recently was fitted with the Bioness and the Walk Aide.I must say the closest I ever came to electro-stimulation was when I got BOTOX injections in my arm,but these 2 pieces of equipment are an amazing way to get your treatment while you are actually trying to use those muscles.Even though my treatment was brief,I was able to open my hand and spread the fingers out, my toes uncurled and my ankle didn't roll out,letting me walk with a more normal gait without my foot dropping.It is however,cost prohibitive,Medicare and my insurance will not cover them. It doesn't eliminate the need for hard work on my part,but I felt muscles move that I haven't moved in 3 years.My partner,who is very involved in my recovery has taken up the job of putting a form letter for the other people who attended the seminar to personalize and send to insurance companies and Medicare.The representatives said they had never seen anyone enjoy electro-stim as much as I did.I will be going in for a regular e-stim treatment this Friday and will get a basic unit to take home,if it is decided that it will be okay for me.

Best,

Mary

"If I hold a green bough in my heart,the singing birds will come"

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Thanks you all really answered a lot of the questions i was thinking. I guess I'll wait until I get some movement back before I get too excited about the new inventions

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Hi CagedBird,

 

Read George Leslie's blog. He is currently trying a new therapy.

 

Take care,

Dickons

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Hi- I finally found a doctor is up on the latest rehab technologies; theres a lot out there. My priorities:

 

1.Just walk faster (use an AFO and cane) . I just plug away

 

2. Get more 'action' out of affected hand and arm (left side). I'm trying:

 

A. Botox (to reduce spasticity).

 

B. Saeboflex

 

C. Bioness' Ness H200.

 

Remember, unfortunately there isno 'magical fix/overnight' rehab is slow and gradual. The real trick is to get insurance to pay for it. My doctor recommended:get disability Igot 'lucky' (unfortunately you have to be pretty F'ed up; I got it and if you're younger than 65 (only 52) you can get Medicare, I enrolled in Medicare B (it should pay for 80% cost of the oupatient therapies; I'm trying a MediGap Policy to minimize out-pocket expenses/copays); I'll try to keep you posted of progress, That's my doctor suggestions for my insurance 'strategy' - unless you're Paris Hilton I presume affordability is a priority! if any! :Tantrum:

 

Michael :cheer:

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Hi All,

I have looked into the Walkaid and the BioNessL300. I have been fitted for both of these and like the BioNess the best. It seems to work better with my gait pattern.

I am going to Winston Salem, NC on June 11 to see a PT and be evaluated again for the BioNess. When I tried it the first time, it was with a facility that was interested in getting the units for therapy, and they had asked me, as they thought I might be a good candidate for the unit, to try it out.

Has anybody out there got one of these units? If so, how is it working for you? They are pricey and insurance doesn't cover, but I am willing to work out a payment plan with BioNess if it will rid me of this AFO.

Thanks for any feedback.

Alann Forrester

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We checked into the BionessL300 for Rachel. It wasn't fitting for her at this time since she has so much Dystonia. The cost is around $4500.00, none of which is covered by insurance or Medicade/Medicare. The product is very new. If it proves to be as good as an AFO, there will be coverage on it. Still in it's trial stage. It would be so much better then an AFO. You wear the device around your knee, not in the shoe. Electrodes help to move your foot helping with drop-foot. Dystonia and tone hinder the use of the electrodes. I sure hope it can help some people though.

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