10 replies to this topic

[Claire08]

Hey you guys. I'm new here and asking a question on my mom's behalf. She is a C4 quadripalegic due to an illness last fall. She does have some use of her right arm, and has some sensation to her right thumb and index finger. She received intense in-patient therapy, where she appeared make progress toward independent living. At that time, she was *fairly* good at maneuvering her wheelchair. Of course she ran into things, but understandable as I imagine it's hard learning to maneuver the chairs. However, here we are 9 months later and she has a horrible time getting around. Of course her chair is different than the one she used at Shepherd, so maybe that's it. But after 7 months at home, I would expect her to be used to it by now. She runs into walls (sometimes making big holes in them), runs into people and over our feet, and the other day ran into the kitchen table almost pushing it out the kitchen window. Not only is it destroying the house, but it's a danger to herself and others. A few weeks ago she somehow managed to run up on something and the chair was on 2 wheels about to fall over. It's scary!

Part of the reason is that sometimes she doesn't pay attention to what she's doing. And when she runs into things, instead of taking her hand of the control and stopping, she kind of 'plows through it.' But a lot of the time she is being super careful and it looks like she's doing great but then all of a sudden she'll start going to the left and run in to a wall, table, etc. This is a big source of frustration among all of us. She says it's because she can only feel 2 of her fingers but her chair has the joystick so it seems like 2 fingers would be enough to control it. I told her a week after she got her chair to call the company and tell them she didn't like and and couldn't control it, but she never did. Now it's too late. Is this somethinig that others have dealt with? It's affecting her independence, not only in her home, but out in the world. THe only place she goes outside the home is doctor's offices, and I really feel it's because she and my dad are afraid to take her to a crowded place for fear of her losing control of her chair and injuring someone. I get so frustrated when I see other quads in their chairs out and about and I wonder why the same can't be true for my mom. Is it the chair? Is it her? Is there anything we can do to help her?

Thanks.

[greybeard]

Does your mother have spasms?

[ClaraTaylor]

Ask her to contact the company who supplied the chair. You may find they can adjust how sensitive the controls are.

[rAdGie]

this may not be the problem but i do know on some or most electric chairs you can adjust the speed, maybe if you adjusted the speed she wouldnt do as much damage or might just have more time to respond etc

[Millard]

Ask your supplier about a T-Handle to use instead of a joystick. They have several type devices that should make it easier for her to safely operate the chair.

Good luck.

[bashko!!]

millard makes a good point, with limited hand function it might be easier to use a t-handle (sometimes called goal post handles). This would allow her to rest her entire hand on the joystick and drive using her entire arm (especially the shoulder) instead of finding the right combination of fingers to drive with. I use one myself, my first t-handle broke a while back and I can say that it was WAAAAY more difficult using a standard joystick. My chair dexterity dropped 10 points at least haha.

Here's a link, they come in all different heights and witdhs but this link is a good example. As millard said, go through your supplier. It is a medical need that hopefully will be covered by insurance. They are ridiculously priced if coming out of pocket.

http://www.biodynami... screw, 5" wide

[wheeliebear75]

I would quote everyone's post....but lets just pretend for time's sake that I did shall we?

100% agree with everyone's comment.

Additionally though.....how much has she tried just practicing? Noting that the above will help quite a bit....but just practicing doing figure 8's & paralel parking against the house are useful skills & they're something that Children's Hospital made me do.

But do note though that SOME "damage" is just going to be unavoidable; my own home has some unique markings from years of my wheelchair rubbing/bumping/& scraping doorways & walls.....it's kinda comical....since we don't have to worry about a land-lord to be upset by it.

[Claire08]

Thanks you guys. The wheelchair she used at rehab had a t-handle, as well as the loaner one she had for a few weeks at home until her new chair arrived. But alas, it came with a joystick. I urged them to call the company and request a chair more like the one she'd had, but for some reason they never did. I have decided that though it's too late to call and ask for a different chair, I will call myself and ask if they could put a t handle on it instead of the joystick. I'm so tired of seeing her struggle in this aspect, and will do whatever it takes for her to have a little more independence.

[wheeliebear75]

Yes the T-handle shouldn't be anything "tricky" to do. Now as for expense.....how long ago (as in days) did they drop off this NEW chair? These places usually have a 30-90 day (change before that date to avoid labor) rules & just make a stink & playing on the "Do you realize my mother is elderly aswell?" bit might not hurt your cause. (wupsie....did I say that? ) Try the regular methods with contacting the company about the joy-stick change & hopefully you're still within that "change this please" timestamp, if NOT.....ask them about why the differnce in boxes in the 1st place, & emphasize that she can NOT safely drive in it's current set-up, which if she is injured or injures someone else just because the switch wasn't "right" ....it's (@ least in MY opinion) somewhat their responsability to FIX it. Though granted they should have been contacted within days....that's a mute point NOW. Good luck & let us know how it goes.

[Tetracyclone]

Wheeliebear missed your point when you said it had been 9 months, but YOU should make the call and state clearly that your elderly parents seemed unable to call about this in a timely fashion. This experience should demonstrate to you that it is time to take over such duties. We are all a reluctant to accept when our parents become "selectively incompetent" yet facts are facts.

When you call the company try to have the order form in front od you in case it clearly asked for the T Handle. State your case and let them make theirs. I suggest you say very little on this first call, but repeat your case regardless of their position. It can be useful to make them defend themselves repeatedly. Often their story will change if you insist that they justify themselves over and over.

After that, try to get what they need through medicare. The provider will be the most knowledgeable about ways to get reimbursement, but again, speak with the assumption that they are the ones who should fix this is problem.

My dad's medical company always tried hard to help.

[wheeliebear75]

Wheeliebear missed your point when you said it had been 9 months, but YOU should make the call and state clearly that your elderly parents seemed unable to call about this in a timely fashion. This experience should demonstrate to you that it is time to take over such duties. We are all a reluctant to accept when our parents become "selectively incompetent" yet facts are facts.

When you call the company try to have the order form in front od you in case it clearly asked for the T Handle. State your case and let them make theirs. I suggest you say very little on this first call, but repeat your case regardless of their position. It can be useful to make them defend themselves repeatedly. Often their story will change if you insist that they justify themselves over and over.

After that, try to get what they need through medicare. The provider will be the most knowledgeable about ways to get reimbursement, but again, speak with the assumption that they are the ones who should fix this is problem.

My dad's medical company always tried hard to help.

Sorry I thought it was 9mo since her illness/injury.....wupsie.