Tuesday, November 15, 2005

Chair story

So this morning I had an appointment with the physiotherapist at the home to see about upgrading Tammy's wheelchair. Again.

We started off with a rental back in December of 2001, then got the CCAC involved to hook us up with a physiotherapist to order a permanent chair. She arrived with a loaner and we returned our rental, then spent weeks swapping in cushions, armrests, backs and casters; to dial in the perfect fit. I'd always thought that a wheelchair was a wheelchair, but apparently there's more options than you get buying a car! From order to delivery was another month or two, and then the whole summer and fall before the government paid us back, no thanks to the striking bastards at OPSEU! That first chair folded up nicely to fit in the trunk, and was two inches narrower than usual with 'space saver' arms to work in the confines of our apartment. Tam was instructed how to foot propel (since her arm control wasn't up to the task, even then) but never did, always relying on someone else to push her around.

Flash forward to the fall of 2003 when Tam was at Freeport hospital. She was having trouble keeping upright in the chair, so Freeport's physiotherapist brought in a reclining model for her to trial. I quickly dubbed it quasimoped; a hunchbacked beast you could barely manoeuvre, and forget about getting it anywhere by car. Regardless, Tam loved it, until the day she discovered the power of her own two feet. Freeport, unlike our apartment, had a lot of places to go, with wide hallways and no carpets to drag her down. Tam was thrilled and kept gushing how "I didn't know I could do that!" Which basically just pissed me off, because her mom and I had been trying for years to get her to move around on her own. Anyway, quasimoped was too limiting for her newfound freedom, so the original chair was modified with a new cushion and casters, to tilt her back more while still letting her get around easily.

A year later, Tam was at the nursing home and her condition had declined. She'd begun having seisures, but they were mini-mal (blackouts only) and we didn't recognize them for what they were. All we knew was that she'd be found on the floor out cold, having tumbled out of her chair; usually with it on top of her because of the seatbelts. It was time to look into a safer chair, so enter physiotherapist number three. What did we end up with? You guessed it, the return of quasimoped! Only this time the physiotherapist wasn't as thorough and the chair didn't really fit. (To me it seemed like a racket, just about everyone in that home got the same brand and similar model of chair from the same vendor -- gone was the objectivity of the first two physios we'd worked with.) Worse, Tam was still tooling around the home under her own power, but now in a chair that weighed a gazillion fucking pounds with a nasty-ass steel bar behind her heels for the tilt mechanism. It only took a week for Tam to get her feet caught while moving at full steam, and damned if it didn't nearly tear them off -- leaving her ankles bloody and swollen to the size of softballs! The chair was still on trial and I wanted it fucking gone, but was vetoed by both the physiotherapist and Tam's mom, who had never seen the damage until after it had mostly healed, and didn't believe my descriptions of how bad it was.

Son-of-quasimoped became chair number two, but problems with it continued. Tammy still managed to tip over and take it with her, only now it was a chair that weighed a ton and a half and they had to cut the seatbelts to get it off of her. Twice actually, with replacements paid for out of pocket (sigh). Eventually they caught her in a grand mal seisure and figured out what was going on, so she went on anti-seisure meds and eventually they stopped, but not before they added shoulder straps in response to my request for a five point harness (so that she couldn't throw her center of gravity off enough to tip the chair). The shoulder straps had an un-anticipated effect; now it seems that Tammy was sliding out from underneath the belts and still wound up on the floor, but at least without a chair on top of her. Again I asked for a five point harness, but was told by the physio that they didn't exist. One of the support workers then figured out a way to loop the lap belt through the cushion handle, this worked and got the physio's blessing but left Tam supremely uncomfortable, not to mention eventually ripping the handle from the cushion cover. Fortunately we had a laundry spare from the cushion that was changed out at Freeport -- we pressed it into service, but the cover hasn't been laundered since (ewww!)

At some point Tam lost the ability to get around on her own, so they started leaving the chair reclined all the time. Looping the belt became unnecessary, and the shoulder straps, a huge pain in the ass that Tammy hated, disappeared. Now the issue became the foot rests. Unlike the cast ones on the first chair (which remains our travel chair since it fits in the car), son-of-quasimoped came with molded plastic ones, and they quickly broke under the strain of continuous duty. They replaced them with metal ones, which would be sensible but for this: Instead of castings, these were thin steel plates with mounting holes drilled in amateurish fashion, bolted to adjustable hinges. They look like they were made in someone's garage, have no heel straps, and the hinges constantly get pushed out of alignment. Tam's feet are always slipping off of them, and her ankles are bruised and cut from the sharp edges on the damned things as a result. They may as well have installed axe blades!

A few months ago, son-of-quasimoped suffered another failure when the backrest mountings broke. (Due to Huntingtons, Tam's coordination is shot and her motions exagerated, so whenever she shifts position she tends to straighten out, pushing really hard with her feet and back.) By this time the physiotherapist had quit, which I wouldn't have considered much of a loss except that she was the link to the vendor's service department, so now we couldn't get the damned thing fixed, and the brakes were also failing. (Get the idea by now that this chair was a cheap piece of shit? Me too!) Eventually the nursing home got set up with a new supplier who came in and did an assessment, sans physio, and got Tam into another loaner. Several parts were salvaged from son-of-quasimoped, including the axe-blade foot rests, but there's a taller frame and longer cushion that fits Tam perfectly (recall that she's 6'4"), so she's much more comfortable and not nearly as hard on it when shifting positions. Yahoo!

Back to this morning now, and our first appointment with a new (our fourth for anyone who's counting) physiotherapist. Before committing to the recent loaner, and in light of Tam's feeding tube and continual decline, we're going to try some radical alternatives. Apparently there's a chair called a Bentley often used for Huntingtons patients, because it's got spring loaded parts and stands up to more wear and tear, so we're trying to get one for a trial. What we did get to sample was a CareFoam CF200, which is nothing like any wheelchair I've ever seen. (Or the government for that matter, as apparently they don't cover it.) Tam instantly loved it, but it was being delivered to someone else at the home so we couldn't keep it to trial. They're going to try and get the CF510 though, since it has an adjustable tilt which should make getting Tam in and out of it a lot easier.

I also asked the vendor about replacing the axe blades on the loaner, and produced the cast footrests from the travel chair to show him what I had in mind. He clipped them onto the loaner and took the axe blades with him. D'oh! It never occurred to me that they might fit, because son-of-quasimoped had a different set of quick releases. Sigh. Finally, I mentioned Tam's tendency to slide out from under seatbelts, and asked about our options. You know what the new physio suggested? A five point harness...

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