June 22, 2006

Today with the PT Gary practiced skills related to his “hop” transfers. With the PT’s help, he transferred from his chair to the exercise mat (which is of the same approximate height). Then from a sitting position, his legs dangling over the side of the mat, he practiced maneuvering himself backward on the mat until his legs and feet were out in front of him on the mat. Next he practiced backward “hop ups,” throwing his head down and pressing down on the matt with his arms to hoist his butt onto a mat that was behind him and folded so it was a couple inches higher. Then he would throw his head back and press down with his arms to hop back to where he started. Then he transferred back into his chair with her help, and we went back to his room where he practiced transferring from his wheelchair to his bed. This was significantly harder, firstly because the bed is significantly higher than the chair, secondly because the bed is soft. The PT was definitely giving him more help with that transfer. He ended up angled in the bed, his legs over the side, just as he should have been, but then he was supposed to pick his legs up with one arm and get them onto the bed, then straighten himself lengthwise in the bed, still in a seated position. At one point, he completely lost his balance, but this only meant he fell backward onto the nice soft bed (don’t worry, the PT is always is right there with him). He got back into a seated position and used his “grabber” to get his tennies off. It was here we discovered the value of shoes a size too big with velcro straps. He undid the velcro of one shoe with the grabber, but eventually gave up on the other and used the grabber as a pusher to just push the shoe off. Next came some practice in dressing. He got his pants off as far as he could (mid-thigh), and I took them off the rest of the way. I put them in the dirty laundry as I planned to do a load for him today (such a sacrifice on my part – insert dramatic sigh here ;-)), and got out another pair. The OT came into the room, and the PT turned the session over to her. I put Gary’s pants on him up to over his knees, since he isn’t allowed to bend to do that, then let him do the rest. The OT told him the key to getting into pants while laying down is that when they are at about mid-thigh to put your hand between your legs and grab the pants by the back of them and pull – it’s the back of the pants that is the part that gets stuck. He did that, and then with a couple of turns to both sides, he wriggled into his pants the rest of the way. The OT was impressed with how well he has already learned to turn himself in bed – he hasn’t been able to practice this before, because of the state of healing of the flap.

Next came the nontrivial process of sitting back up in bed, then the getting of the legs over the side of the bed (in preparation for a transfer back into the wheelchair). The OT was also impressed with this – Gary just went ahead and figured out a way to do this without being given any directions. Transferring from the bed to the chair was something he needed a lot of help with (to prevent him from tumbling off the transfer board due to lack of balance).

The next project was to do an IC, starting with gathering together all the needed supplies, then doing the IC, then finishing by taking care of these supplies, all as if it were a “school day” and he was going to have to do his IC in a public bathroom.

At one point the OT stepped out of the bathroom for a moment to replace a necessary supply that Gary had dropped on the floor. Gary looked at me. “Everything takes so much longer,” he said. I nodded sympathetically. Gary went on to recall that the guy who had been so inspirational at the “Been there, done that,” class had said it takes him an hour to get ready in the morning but that he himself suspected it would take him two hours, at least at the beginning.

After lunch, a therapist substituting for one of Gary’s own brought him a wheelchair with power-assisted wheels. There is a battery pack on the chair which supplies the extra push to the chair – Gary gives a push as normal and the wheels extend it with a push of their own. The chair was claimed to have three gears, but we never found third. Supposedly by pushing in on a circular area on each wheel the gears changed, and the change of gears was indicated by beeps – one beep for first gear, two for second, three for third – but none of us could get it to beep three times. Worse, sometimes it would beep two times but seem to stay in first gear. To top it off, Gary couldn’t hear the beeps (I suspect he is not going to regain all his hearing; we are still mystified as to what caused the hearing loss that showed up after that second back surgery).

Maybe I shouldn’t have said “to top it off” there. The topper was that the chair was a disappointment to Gary. First gear assisted his movements a little, but not enough for the wheels to be worth their $5000 price tag. When he put it in second gear, he found it hard to steer (if you don’t push with equal strength in both hands, you’re going to travel to one side), but he got the hang of it more with practice. BUT it turned out to be just as much – if not more – work to use the chair to go up the steep ramp of the Blue Carpet tunnel. The chair kept popping wheelies the entire time, meaning Gary was always back on the tip bars behind the chair, stuck in place. The therapist told him to lean his weight forward and not push as hard, as when one pushed hard the wheels’ response was exactly that of doing a wheelie. But if he pushed slowly, it was as much work as when in his manual chair. More work, in fact – he couldn’t lean as far forward as seemed necessary, and unless the therapist held his back forward with her arm, the front tires still had the tendency to rise. Since she wasn’t going to be following him around holding his back for the rest of his life (and neither am I ;-)), the chair didn’t seem worth it. He will try it again to see if further practice makes a difference. Or maybe tomorrow his regular therapists will have some tips.

There are other options. He could get a chair that has a motor on it and can be driven by a joystick. With the motor turned off it would work like a manual chair. But such a chair weighs three hundred pounds, so is definitely less portable. I doubt many people would consent to have him as a passenger in their car, knowing that meant they were going to have to lift that chair into their car ;-) – assuming the chair would even fit, because it doesn’t fold up to a nice compact size like the manual chairs do. Another option is a power chair – it has no manual option and again is one of these heavy things that doesn’t fold up nicely. He doubts he would go with that option until he is eighty years old or so.

Well, he’s still got some time before he needs to decide what kind of chair he is going to get. He could get more than one, of course, but insurance would almost surely only pay for one.

Gary was pooped out after that little excursion – we joked about how much “help” the power wheels had been, giving him more of a workout than his manual chair had. He took a nap to recover from all that help, and I soon left to go to the chiropractor. The chiropractor is good; I’m glad I found him.

In the evening Gary brought up a few things he’d talked about some time back. Watching me rearrange his legs in the bed, he said he was now used to feeling his legs with his hands and understanding that this was his body; at first his legs hadn’t seemed connected with him, as if they belonged to someone else. He also talked about the “line” that goes across his chest and back, where sensation ceases. When he’d talked about it before I hadn’t understood that the reason he doesn’t like to be touched there isn’t anything psychological but is entirely physical – he said it is hypersensitive there and it doesn’t feel good to be touched there. I think I mentioned long ago that he had had the sensation of a rod running crosswise in his back. At one time he’d thought that was the rod stabilizing his spine, and I had explained that his rod went lengthwise – I even had gotten the nurse in to show him, using my back to illustrate, just how and where his rod was placed. He said he had only recently realized that that rod feeling was again that “line” of hypersensitivity, though it isn’t quite as sensitive as it was. He is going to ask his doctor if there is an explanation for what he feels.

I had been thinking as I left him in the afternoon that he was now almost done with his first week of rehab. Watching the effort he makes to try to learn the new skills and seeing where he is now and knowing what the desired outcome is supposed to be, it seems nearly unimaginable that he is going to learn all he needs to know by July 28th, though I would never say that to him. Coincidentally, in the evening he brought up the same thing. He said he was now confident he could learn how to transfer from his chair to the exercise mat before the 28th but asked with an ironic smile, how often was that particular skill going to come into play? He realizes that should extend to the skill in transferring between surfaces of the same height, but the transferring between two surfaces of unequal height, such as getting from his chair to his hospital bed by himself seems a daunting task.

But we know they are not going to let him go home until he has the skills he needs. If they thought the 28th was a reasonable date for all that to happen by, they must have a reason for saying that, with all their experience here. I pointed out that he has only been doing two hours of therapy a day this week and that they had said he would get up to four (he hung his tongue out at that :-)).

Well, it’s going to be interesting to watch his progress.

We talked to Joe toward the end of my evening hospital visit; he filled us in on the progress being made. The dumpster he ordered to put waste in didn’t arrive as it was supposed to today. Joe called the company, and they told him if he turned on the news on the TV he would find them in it – evidently they were having a big fire on their property today. Joe told them they’d better have the dumpster at our house tomorrow. Go Joe.

He said a a crew of math people had come today to help him tear down the master bathroom ceiling. Janet Rogers was there tearing down wallpaper in the other bathroom. Janet wrote me an email and told me that Wlodek Kuperberg, Jack Brown, and Pat Goeters were there when she was, working on the other bathroom. So thanks to you all. I hope I haven’t missed naming anyone there – let me know. Joe told me the names, too, but I forgot to write them down.

Oh, and Wlodek, Gary really regrets not taking your advice and working out like you have been doing these past years.

I asked Joe about the cats, and Joe said they are friendly and comfortable with him. I nearly fell to the floor when he said Blackjack sits in his lap in the evening (I should have asked him if he’s experienced Tigger’s terrible jealousy yet – Tigger, thirteen pounds to Blackjack’s seventeen, will run Blackjack off if he thinks his brother is getting any attention; Blackjack has never realized that all it would take is one big swat with his paw to put his brother in his place).

But I think I may have discovered why “the boys” have taken a shine to Joe – he’s been feeding them a can of Fancy Feast each evening, ever since the night they started whining at him, seemingly still hungry but turning up their little cat noses when he offered them more of their vet-advised-weight-control dry food. (The only times we’ve fed them the wet food is when they were sick enough to be on drugs and the only thing that would coax them to eat was Fancy Feast, so I’m sure they think Joe is the cat’s meow for giving it to them every night. They’ll probably run away from home to try to find him after he leaves and they only get the dry stuff from us.)

I can understand Joe doing anything to shut them up. I told him that we thought Blackjack in particular had to have been a member of Saturday Night Live’s Whiner Family before we got him. He is an absolutely beautiful cat – built big, having glossy black fur (my older sister when she first saw him thought we must give him egg shampoos) – but I often want to rip his vocal cords out.

There are disadvantages to Blackjack getting comfortable enough with you to turn friendly.

All for now.