June 28, 2006

Today’s therapy started out with transfer from his chair to a shower bench (like the one at http://www.medicalproductsdirect.com/tranben1.html). I didn’t notice it being any more difficult for him than the transfer to the exercise mat, but they cautioned him it would be harder tomorrow: at eight in the morning we (yes, “we” – whose bright idea was it that I needed to be there at eight am? ;-)) are going to practice showering for real. So Gary will be transfering to the shower bench, giving himself a shower, drying what he can reach (I will dry the rest, thus getting to mark off another of the family training skills), and then transfering back to his wheelchair.

After Gary practiced this transfer several times, the OT wanted to check on Gary’s ability to maneuver himself in a real bed, so we killed two birds with one stone by having her observe me use the hoyer to transfer him to the bed. She then officially cleared me to do that without supervision.

After his OT session, his psychologist came in for her weekly visit (evidently she is not the probing type: her sessions with Gary usually last about two minutes – she asks if there is anything he wants to talk about, he says no, she says “good” and leaves – which is just fine with Gary :-)). Gary was on the phone with his mom at the time, so the psychologist talked to me a little while – this is the first conversation I’ve had with her. She said that they’d had their weekly team meeting, and they all agreed the two of us were doing great, BUT, their concern was that we don’t seem to know we’re doing great, that we don’t seem to have the confidence we should be having. I told her that for my part, that was my personality – that I am a perfectionist (“No,” you gasp in disbelief), that I like having things laid out for me so I know exactly what I am supposed to do so I can do it right. And the kind of precision I like is not possible in this situation. For instance, the thing that scares me most is sharing responsibility for his skin care, as he’ll be counting on me to check the parts of his body he can’t see. I know that what I’m supposed to do is look for changes in his skin, but with my somewhat lacking visual memory, I’m afraid I’ll miss some sign I should be aware of and therefore be responsible for him getting a pressure sore. Or that somehow I’ll do something else wrong in his care and he’ll suffer for it. She assured me that they all had confidence in me, that if they ever didn’t in some area, they would definitely let me know. Being me, that doesn’t take away my worries ;-)

When Gary got off the phone she said similar things to him about lacking confidence, and he said he was confident he would learn what he needed by the 28th, but he was not confident he would learn it by the 14th. She told him the team had agreed he would not meet all his goals by the 14th and had gotten him extended to the 28th. Gary said that in that case, he had no confidence issues.

Next Gary met with his tech. His first task was to make the bed set up for that purpose in the gym. “You realize I was never that great at this,” he joked to the tech. He then told her that even though he was in the hospital, he wasn’t going to make hospital corners.

As he made the bed (doing a better job than I ever would ;-)) I joked that next he should tackle the laundry -- I had a load of his clothes in the third floor dryer that were probably dry by now. The tech thought this was a good idea (I'm not sure what Gary thought ;-)), and we next went to the laundry. The front-loading dryer wasn’t that much of a problem for him to work -- he used his grabber to remove the dried clothes. It did take time and effort for him to manipulate the cycle control with his grabber, though. The washer, top-loading, as ours at home is, was being used, so he couldn’t try to work it. We considered the problems it would pose, and while we could see him being able to load his clothes into it, we couldn’t see how even with the grabber he would be able to remove the heavy wet clothes from it without taking an inordinate amount of time to do so (and we also couldn’t see how he would know all the clothes were out). So rather than him having to regularly call the math department to say he wasn’t going to be able to make his class that day because he was still fishing out clothes from the washer ;-), I have made the supreme sacrifice of consenting to remove his clothes from the washer.

Or maybe I’ll break our washing machine so we have to get a front-loading washer ;-)

That particular session ended with stretching. After lunch, Gary and I had a “supervised outing” with a rec therapist, this being part of the requirement for us to get a “push pass” so we could go off Shepherd property without supervision (not in a car – me walking, him in his wheelchair). To start the outing, I had to be “checked off” on handling curbs with him. This was pretty much commonsense (so much so that even I had guessed what should be done before I was told ;-)) – to go down a curb, you make sure his chair is locked, remove his tip bars (or the evidently more politically correct term, “wheelie bars”), take everything slow, press a hip against the back of his chair, have him unlock his chair, tip his chair back slightly against your hip, and go down the curb. You essentially reverse the procedure to go up a curb. There will come a time (presumably before we leave) that he won’t need any supervision whatsoever to take curbs, and he’ll do them by performing a little wheelie (after taking off his tip bars, which would prevent his chair from going back far enough to clear the curb).

After I was cleared on that, we took off down the road. It was downhill all the way for the two blocks to Fresh Market. Their parking entrance sloped sharply downhill.

Having observed all that, I knew getting back to Shepherd was going to be . . . interesting.

Gary liked Fresh Market, saying it reminded him of Whole Foods, a store he also really likes. I showed him the fresh and prepared foods I thought he’d find interesting (he has decided on their sushi the next time he has a dinner emergency ;-)).

Next he tackled the ice cream case (he “needed” ice cream). He got the door open fine but couldn’t reach the strawberry Hagen Daz. His gripper wasn’t a trustworthy tool for this (though later we found out there are a number of different kinds of grippers – maybe another kind would have worked). Rather than make him settle for a different flavor ;-) I got it off the shelf for him.

His final task at the market was to open their bathroom door – the PT had warned him that it was a heavy one, as past expeditions had found out. Gary got it open both on entering and exiting but noted it was indeed the hardest door he’d attempted.

Next came the return to Shepherd. Getting out of Fresh Market’s parking lot was a huge challenge, given the steepness of its slope. In fact, in the interest of time (since we didn’t have infinity), I had to push him up the last half of it (we later joked about how he’d have to live in the parking lot if he had to do his marketing by himself here). He made the first block back to Shepherd by himself, taking frequent rests (I kept thinking that all the people in the cars whizzing by us must have thought the therapist and I were cruel people, walking next to but lending no aid to this crippled guy huffing and puffing his way up Peachtree in a wheelchair). But we were not going to make his next class if we had him get there on his own, so I pushed his chair for the next block and then up the upward sloping entrance to Shepherd. Had I known ahead of time I was going to have to do all this pushing, I would have vetoed this excursion – it did not do wonders for my back. Fortunately his chair is designed well enough that it was in no way like pushing a 130 pound man, but it was still more than I should have done. He thought it was more than he should have done too – he said a one block excursion would have been a better first trip. But all in all, he was glad to have made his first trip out of Shepherd, even though he was still tired from it by the end of the day.

Next came a group class, which his therapists said would be fun – Gary was dubious, because the last time he’d had this class was the time where everyone else got to play pictionary and he and another guy “got” to lift weights. This time it wasn’t purely for fun, either, but it did have some enjoyment value to it. Gary and one of his roommates were paired together, and they alternated playing a computer game of table tennis. It was an interactive game, each one of them pitted against a computer figure. They used their hands as the “paddles” to swat at the ball onscreen – so the therapeutic value of the game was that it made them practice their balancing skills (each of Gary and his roommate fell over backwards onto the mat at least once – they’re supposed to learn to throw back their hands to catch themselves when this happens). After a while of that game, the two of them played each other in checkers. I left them and went to work on the blog, then returned at the end of the class. Naturally the therapists hadn’t let them finish the session with a fun game of checkers – they each had to do twenty depressions (lifting themselves off the mat with their arms).

(Speaking of the blog, you may have noticed an increased time lag in posting – the Shepherd people are keeping us hopping here, and it is more difficult to find the time to write. And I am WAY behind on emails again.)

Next we went to a “hot/cold” class, where the problem of having increased difficulty with regulating one’s temperature was discussed (one may not sweat below the level of injury and blood vessels may not constrict as they should, for instance). It is typical that one gets cold easily (this is Gary’s experience), but others find they get hot easily. Or one can swing back and forth between the two. “One never knows,” the class leader told us.

Strategies for dealing with heat or cold were discussed, the strategies pretty much standard – dress appropriately (what that might entail was gone over), get out of the heat/cold, etc; signs of overheating were discussed; special clothing was discussed, like a vest that circulates cooled or heated water.

After that class I left for a massage.

In the evening Joe called. I overheard Gary tell him that it was amazing all Joe was doing on the house and that he was eager to see the results. After hanging up with Joe, Gary told me that at the beginning of every summer he makes a list of things to do for the upkeep of our house. By the end of the summer he usually has gotten two or three things done. He said that in these few weeks Joe has done everything Gary has had on his lists for the past five years – and more!

(Jumping ahead a day, when I told this to Joe on Thursday, he said the “secret” was to hire out for this kind of work, that it was not our area of talent or interest (astute observation ;-)) – just as writing or math was not his – so to get someone else to do it. I told this to Gary. He laughed, and then he said the problem was in finding someone as good (and reliable) as Joe to do the stuff.)

I noticed a package from Donne had come while I was gone – a couple classic DVDs (“Annie Hall,” “Crimes and Misdeamenors”) and a big thick book. Main Currents in Marxism. I am curious about this choice of reading material.

During my evening visit, Gary’s new roommate’s speaker phone was constantly in use, one call after another, and the guy spoke so loud and his phone was turned up so high it was like the guy and his conversation partners were yelling at each other. Gary and I literally couldn’t hold a conversation unless it was between calls (if that keeps up, guess who is going to put in another complaint). We heard over and over the guy’s explanation of his injury, etc., etc. Being driven crazy by the loud conversations, at one point when the guy told his caller that his injury was an incomplete injury and affected him from the neck down, I remarked to Gary that it was too bad it wasn’t from the neck up. This sent us into a spate of laughter, as we joked about talking to the guy’s doctor about reversing the direction of the guy’s injuries so he wouldn’t be able to talk.

Hey, I can be mean.

Just before I left for the evening, Gary asked me some questions about my “transfer.” Earlier in the day I had told him that I still thought he could be bending down lower at the beginning of his transfers (one bends away from the direction that one wants to go in – head goes to the left if you want your butt to go to the right), and that he wasn’t using his body to maximum advantage. I said I’d try to demonstrate and did a transfer, careful not to use my legs, though I probably wasn’t able to help recruiting some abs. I wasn’t sure I’d be able to do one at all, but he said he was envious – I’d done a good one. Importantly, he said he’d learned something by watching me. He realized that in going to the right, I’d pushed off with my left arm, mainly using the right arm for stabilization. He’d also noted that I’d pivoted on the left arm while pushing (one pivots because one is not going straight to the right, but twisting the butt from off the mat to the wheelchair that is in front of and to the right side of one). Finally he noted that by lowering my body toward the mat on my left arm, I could get a bigger push with that left tricep than he could get by staying nearly vertical. For some reason he finds he always wants to grab with his right hand to pull his body to the right rather than pushing off with his left hand and blindly aiming his butt in the direction he wants to go. So he thanked me and said he thought he understood more of the theory behind the transfer and he thought that understanding would help him do it better. We’ll see if this theory transfers (sorry for the pun) to practice tomorrow.

To finish this entry: Janet Rogers was able to snap a picture of Blackjack! A great one – we’re amazed she got such a closeup. Here it is, along with one she earlier took of Tigger.