Thursday, December 1, 2011

RIP MacBook, and how do you dispose of a wheelchair?

I really meant it when I said I would update more often. But, as the saying goes "We make plans, and G-d laughs" Or, as I like to say, I am having really bad karma. It's as if some witch or voodoo queen has put a spell on me. To summarize, I have a brand-new wheelchair with one footrest, an old wheelchair stuck in full incline-- from which I had to be carried out -- taking up half my hallway, which I don't know how to get rid of, and a MacBook that just decided to die on me. The good news is that I have an iPad with a keyboard, that does about 80% of what my laptop did; the other 20% are pretty important, but I have found alternatives for most of those things. Where the hell do I start? I'll start with the laptop. I know eventually I need a new one soon. If you're a Mac person, it had a Leopard Operating system, and since then we have Snow Leopard, and now Lion. ButI wanted to wait until next summer when my home equity loan will be paid off and more credit will open on my reedit cards. I didn't want to open another credit source, nor did I want to try to increase my credit card limit -- which I am not sure they would do for me anyway. I don't have extra money to be buying a $999.00 laptop. I don't know if I ever will, in reality. So it took me a while to load the right apps on my iPad to be able to do some of the things I needed. I will bring my laptop into an Apple store after the new year, when I don't have to deal with holiday crowds. But I felt so discombobulated for a few weeks, because I didn't know how to do a lot of things on the iPad. Now it's my best friend, especially since the therapist at NYU/Rusk Institute got me a grant that paid for an upgrade to my Verbally speaking program, and a case with a bluetooth keyboard. Bless them! I wish I could say positive things aabout my wheelchair, and the wheelchair vendor. The name of the vendor will not be published here. But if you aare in the market for a new wheelchair, and trying to decide between vendors, please email me privately and I will give my opinion. Anyway, my footrests are a different style than the ones I had before. So getting on the Access-a-Ride lift was a challenge with a learning curve. The second time I was boarding, the footrests [they are separate for each foot this time] got caught up because I didn't tilt back far enough, and the right one broke off. You see, the only way I can board is to move up, tilt back a little, move up further, and tilt back. This is the only way the lift will work, because it's the only way to clear the yellow lines on the lift. So I emailed the wheelchair company, and told my rep what happened, and after a week I heard nothing. So I emailed again, and that day I got a call from the repair department, whoo said they would have to order a new footrest. That was two weeks ago, and as I write this, I am emailing unsuccessfully for an answer. I have a friend calling them by phone, but I haven't heard anything yet. I suspect they are playing phone tag. Oh, and the Purple Communications i711 relay calling I use, has an iPad app, but it's a bit "facocked" [sic], which is Yiddish for "messed up". Some iPad apps are better than on the Mac and some are not so good. So in the meantime, I still had the old wheelchair. I had called a certain ALS organization to donate it, but the person on the other end [again, no name] never got back to me [it's a freakin' epidemic around here -- nocallback-itis --]. When I called back this person after a week, he acted like a total knucklehead, saying that I probably ran the battery out after so long, and I had to recharge it for two nights in a row and make sure it was in perfect running order before they would take it. I reminded this less-than-professional poop-brain that it was HE that let my wheelchair battery run out by never calling back, and that I was trying to make a DONATION, not ask HIM for a favor. When I got off the phone, I thought "Now you're getting BUBKES [Yiddish for "nothing", "zilch"] and decided to go back to my original plan of selling it. Okay, so the next day, I lose the footrest on the new wheelchairm so I marvel at the good fate that the old wheelchair was still cluttering my apartment. I charge it up and it works perfectly -- for one day. I was all inclined back, relaxing my muscles and taking the pressure off my back. This break is so necessary for a wheelchair user, and also raises the feet to prevent swelling and aids in positio=ning because the gravity pulls the body back and eliminates the need for someone to pull the wheelchair user back [which is dangerous to both puller and pullee]. So there I was all relaxed in the old familiar wheelchair,, and when I tried to go back to a sitting position, the wheelchair would not budge. I have had this problem before, and the wheelchair vendor has taken it away twice to repair it and claimed it was all fixed. The two aides who were overlapping at a change of shift, had to do the risky move of lifting me out, and dropping me on the bed. The old wheelchair is still sitting there, waiting to be "junked" because this is not something that can just be put out on the curb to be picked up with the garbage-- at least I assume not. The wheelchair company will not take it, and won't answer my emails about what to do with it. And nobody seems to know. In a 400 square-foot apartment, a wheelchair in a perpetual incline position takes up a lot of apace, along with my other equipment, including the portable shower. Nobody wants it, and nobody will tell me what to do with it. And nobody will want to wheel it o=ut in manual mode.


Lisa said...

Hi Fern. I had a wheelchair with some mechanical problems. One dealer told me that if I left it on the street someone would take it. I ended up donating it to the ICS (http://www.icsny.org/). They picked it up. I am not a member there (you have to be on Medicaid, and I am not there yet). MANY of the dealers are crooks; I also have one that I warn people about.

Lauren said...

Hi Fern- Are you still stuck with the chair and trying to get rid of it? I wonder, would it fit in a car? My ex-husband collects things like that and ships them to the Dominican Republic to a rehabilitation center in his home
town of San Jose de Ocoa. Let me know- he is also good at fixing things, but I don't know if it would fit in a car so we could pick it up.

Ashley said...

Hi Fern, how are you? I stumbled upon your site and have read many of your excerpts. My name is Ashley and I am a nurse. I am taking care of a patient (who I don't even consider a patient, but a friend now). He was diagnosed with ALS 2 years ago and was recently trached/pegged. I am now with him once a week doing home care. He is having a very difficult time with accepting the disease and opening up to using his computer to communicate and also getting out of bed to chair etc...I spoke with him last week and he said he would like to speak with someone with ALS and/or have a psychiatrist come speak with him at home. You seem very knowledgable about the many resources out there. I was wondering if you could email me to talk further about this? I have contacted the als association with no luck getting through yet. my email is ashleyzarkowski@yahoo.com I would love to hear from you. thanks so much!