I WISH THIS WAS ME [video]


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Dr. Drew's Lifechangers had a show about stroke last week. There was a woman who had a stroke when she was 21 and the actor from Hercules talked about how he had strokes and promoted his book. Watch this part of the show

 

I don't know how she got on the show but I really wish I could get the bioness too. I talked to my Vocational Rehabilitation counselor and she is having a hard time proving to the state that I could really benefit from having the bioness. My physical therapists sent a report that I am stable and quit therapy (I had to go back to work and I reached all of my PT goals), my doctor sent a report that this is pretty much the way I am going to be and there is no proof the bioness will work, and all my counselor can see is that I graduated college and work every year. All these factors make it very hard to prove that I don't need this device for work and school.

It is very annoying and frustrating because everyone is acting like I am just fine and the bioness is just an expensive toy I want to play with. For those of you who read my blog "Working HARD" you see just how much I go through. Getting through school and working jobs is not EASY. I guess I got to stop doing such a great job at making everything look easy just to get my voc rehab counselor, doctor, and therapists to see that I really need help. The worst feeling is days like yesterday when my good arm felt sore and ached all day. There was nothing I could do accept keep using it. Not a day goes by that I don't wish I had the bioness. Maybe I should write Dr. Drew

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Oiy... it's really frustrating when people have that attitude. "Oh, you're doing fine!" ... yeah, on -good- days, which isn't 365 of them in a row!

Or even if they have some sympathy, it's still "well, you've learned to adjust and cope". Sure, but that doesn't mean it's easy. Having stuff to help out is much better than just doing everything yourself.

 

**huggle-pat** I know just how you feel!

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Katrina:

 

I guess maybe its my acceptance or age, I feel lot of these devices promises way too much & creates hype than actual performance, so I don't want to waste money & energy fighting insurance company, so I work towards my acceptance is how I feel.

 

Asha

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I have been using Bioness at therapy and it works a little bit for me, fingers will open some except for thumb . I also have limited shoulder movementso I have to move my affected arm with my other arm/hand, maybe if I could use it morethan half an hour a day it might help, but they want $500 a month to rent one wbich I cant afford.Sure wish someone would give me one. Maybe you'll get a chance to use one and it will work better for you, good luck.

Catman

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Katrina, You have hit upon one of my soap-box issues: Why do they make things for the physically-challenged, and then charge so much that the average physically-challenged person, cannot afford it? I undrstand free-enterprise, etc., but it's ridiculous sometimes. For example, my power chair costed about$14,000.00! Since it was purchased 2 yrs. after I got out of rehab, neither the wc co., nor anyone else measured me for it, so, its not custom-made- it's just a standard frame, with metal and plastic. The only somewhat "unique" thing about it is that it has a "lift" which raises the seat, because at 5ft. when standing, Iwasn't tall enough when seated to see to cook, see in the average bathroom mirror, etc. But the insurence co. considered the ability to see to cook a luxury, and initially denied the request. Then reversed their decision, and agreed to pay. 5 mos. after application, and after jumping thru several hoops, I got the chair, and use it daily.Buying a car, pre-stroke was easier! BTW,the lift for my chair accounted for only $1400.00 of the total cost. I'm sorry, but I don't have any suggestions. I am left-side affected, and since the tone has gotten so bad in my left hand, I'm planning on asking my doc for more therapy. My guess is that I, too, will need "help" with my lt hand, and I will be where you are now. Good Luck,Becky

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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I agree with all of you and can only hope with trials and exposure, success rate that will put people back to work, driving and spending-stimulating the economy and saving the Insurance companies money - less cost for therapies, medications, etc. will there be a change in the attitude of the medical community. We all saw it with stenting, and in our lifetimes, so it can be done.

 

The one thing I will share is Bruce has an EStim unit. We rented for a year and then the company gave it to us, no additional cost. We still have to pay for the pads-no cheap deal there, but we have learned ways of extending their life. I can make Bruce's hand open and shut with proper pad placement, shown to us by OT. I use it every single day on his shoulder, lower arm and hand. We just started the hand in December and no change yet. But if you have the unit and it is sitting in a corner somewhere, get it out and experiment with it. Regardless of how it is applied, electrical stimulation is electrical stimulation. Right now we only do one half hour a day as it is painful but Bruce wants to try and step it up to twice a day next week. Just a thought, Debbie

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  • 1 month later...

I love you guys. Its like each one of you touched on how I felt about my situation (lack of support, acceptance, and financially paying for it). I agree with all of you. I have not heard anything back from my voc rehab counselor. I know it is expensive and it is not a magic pill that can make me normal again but it is my only hope so I am still trying to get it.

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This is all because the definition of recovery for insurance purposes is ADLs and since you only need one useable hand/arm to accomplish them you don't need therapy or orthotic aids. If we had a useful stroke association that actually cared about survivors maybe we could agitate better results. Sorry about the rant but survivors as a whole are too quiet.

Dean :growl: :crazysmile:

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Dear Katrina,

I do have a bioness paid for by my insurance, but please listen to Debbie--I used and e stim unit for 1 1/2 years and my Occupational Therapist helped me calibrate it and learn where to placrt the pads. I know it helped and got my hand opening and closing again after stoke. I'm hoping the bioness will help me with my finer motor skills. Some days there is a tad of improvement and I tell myself if I can do something one time I can get it back eventually. Please try an e stim unit--I so hope and pray for your full recovery, although I think you are an amazing young woman already. Hang in there, Bev

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Katrina,

 

Try to contact Dr. Drew by email and see if you can talk him into you being the second person to get the devise! I think he has a website too, just google him and see!

Fred!

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  • 2 weeks later...

on the subject of costs. my father was in a accdent and was paralized from the waist down and could move his legs. due to his service in the military he recieved 100 % medical coverage . they nade him some high priced varbon fiber leg braces so he coul manage to get in a standing oposition with a walker and help and shift his weight and swing his legs . it was a wyste of money he never walked they paid fr chair and electris scooters and when it happened set up his car with hand control;s and a cartopper that lifted and stored the chair. it just gets me that one will get it all and others get nothing

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if you're that determined to get the bioness, call their toll-fre number and explain your finncial plight. they were very helpful in coming up with a payment plan that worked[still very expensive]-wish i could say he same for the device. isent it back[did noting for me] and went with the saeboflex and after 2 years, i'm able to move 11 poof balls without the device on...just my two cents but hope it helps.

 

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