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July 21, 2006

Uh-oh. Back was very sore and stiff when I woke up this morning – and it interrupted my sleeping during the night. I am worried about it, and I decided to help out physically as little as possible during the therapy sessions today, for example, letting the tech and therapists aid Gary in his transfers instead of me.

Gary’s first session was with a PT, again, not his own. They started out with transfers into our car. Gary did his best one yet! Nice hops, good balance, not rough with his legs as he got them into and out of the car. No head bangs ;-)

This PT works in the day program, and she has been a therapist for fifteen years. She gave Gary a tip on his transfers – to lean forward and push through his shoulders and scapulae, not just through his arms. This will give him a little more height. You can try it yourself: sit on some surface where you can get your hands next to your legs, and push down with your arms to raise yourself up (no fair using your legs – “unfortunately,” you will most likely not be able to not use your abdominal muscles to help, so you won’t experience this like Gary does); now really push those shoulders down (“lengthen your neck”). She told him that if he did this, it would help save his from shoulder problems. She told him to practice doing dips and his weight shifts this way, really extending that scapula. And she told him to get prone and do the terrible threes regularly to strengthen his back.

Next came wheelies and curbs (Peg bites her fingernails). Of course, the PT used a gait belt on Gary’s chair. She had him try to find his balance point in the wheelie and told him he was going too far back. After she said that, he was able to hand in the wheelie position all by himself – she kept her hands surrounding the handles on the back of his chair but wasn’t actually holding onto them. He stayed in wheelie position (traveling a little down the hallway) for an entire minute! He came down and said he needed a rest. She told him to take the rest he needed, that she’d heard he busts his butt during his therapy sessions, so she would believe him if he said he needed rest – unlike some of her patients!

Next she took us to the outpatient gym and had him practice curbs on the 4" wooden platform. He took the curb again and again, working on momentum, timing, and technique. They went a little overtime, but the PT said he had to end on a good one. A couple more tries later he did one that was smooth and on which the PT said she hadn’t had to help much, so that was a good stopping point.

We had about an hour’s break, so we headed back to Gary’s room, where he called the university newspaper reporter and answered her questions. He told her he’d been at the university for thirty-two years, and he told her about the accident, his injuries, his surgeries and stay at UAB Hospital, how it was my sister who had found out about Shepherd, and so he’d come here for the rehab program. Unlike the local paper interview, Gary mentioned getting the bed sore at Birmingham, and how he’d had to have surgery on it, delaying his rehab for about three weeks (I think I mentioned that to the other reporter, but am not sure), but that then he’d gotten into intensive rehab and was still doing it now, spending most of the day in one sort of rehab or another (don’t you know it!).

The alarm for a weight shift went off, prompting Gary to tell her about the need for that, and how he was going to give the phone to me for a minute until he completed one. I can’t remember what I babbled about. I know I said we expected him to be independent within a year, and she asked if that meant he’d be walking again. I said no, that it wasn’t expected that he’d regain any movement or feeling below chest level. She asked what being independent meant. I should have told her that it meant he’d be able to take on all his personal care himself and able to function so well in all the activities of daily living that if need be, he could live by himself without any caretaker needed, but I blanked out, and since Gary had just finished his weight shift, I told her Gary could explain and handed the phone back to him. I was still flustered and forgot to take notes so I can’t tell you what Gary said for the next little while. When I next resumed my note-taking he was telling her that part of the rehab entailed moving his body around, like getting it into the car (he should have included getting it in and out of the bed!), that such things involved a lot of strength and technique, so they spent a lot of time developing both. He also told her that they went through various activities of daily living and how he’d have to adapt to new ways of doing them – he gave the example that just today he’d spent time in a cooking session.

He told her he will get back to teaching Fall Semester, at which time he would have a flexible schedule of just working with his graduate students. He said he’d get back into a full schedule in the spring. He said Michel Smith was the one to thank for this. He then said everyone in the math department was being very supportive, and told the story of how my brother was leading the modifications of our home to make it wheelchair friendly but had had a crew of math people helping out every day – that everyone had been really wonderful. He said he’s not a person who likes to ask for help, but now he’s going to need some, and he again reiterated how people have been really wonderful.

He told her he was going into Day Program for the first two weeks and then would be home for good (maybe he hadn’t wanted to get into how he would be returning to Day Program in December to pick up advanced skills he’ll hopefully be ready for (like how to get down to and up from the floor) and to take drivers’ training)).

It sounded like the interview was winding down, as I heard him apparently repeat her words that the article was coming out this coming Thursday (save us copies!). I think she must have expressed some sympathy toward him, as he next said that it was just one of those things, that it happened, he can’t do anything about it, so he has to make the best of it and that was what he planned to do. He said that anything can happen at any time, that he never dreamed it would happen to him.

He then told her about the blog, saying that just a few days after his accident, I had started it to keep family and friends updated on his condition. He said I now used it tell everyone what he was doing every day. He said he was amazed at how many people read it, surprised that people would be interested in the details of what was going on with him (and you do get details, don’t you ? ;-)) and he told the story about one of his colleagues being at a math conference in Greece and topologists from various parts of the world being there and asking her about him, but that she couldn’t tell them anything they didn’t already know because they were all reading the blog. He told her she should take a look at it, and gave her the URL.

The conversation ended about there, and soon it was time for his next therapy session, this one with the OT. I told her I was giving my back a break, so she assisted Gary with a transfer, this one to the bed in the gym. He did an, in her words, “awesome” transfer. He still needed her help getting his legs up on the bed; she said it was clear from his weeks of therapy that until he got the bending restrictions (due to his flap) removed, I would have to help him get his feet up and take off his shoes for him. She then had him prone and had him do the terrible threes, commenting that he’s really bulked up since being here – and I agreed! Gary’s student Brad Bailey called at this moment, so I tore myself away from Gary and found Brad directions to Shepherd from the north of Atlanta.

When I got back to the gym, Gary was finishing up his “threes,” and she had him maneuver himself to the side of the bed and transfer back into his chair. She commented that he has done incredibly well in his rehab for not being athletic before his accident (golf doesn’t count ;-)).

Gary and I went back to his room for the lunchtime routine. Gary pointed out that I had dropped a nickel on the floor. He said that before his accident, he hadn’t thought it worth picking up pennies off the floor, now he didn’t think nickels were worth it. I asked him what the smallest denomination was that he would now expend the time and effort to pick up. He said maybe a dollar.

Gary had a new roommate check in, and we were told this was someone else who had gotten a bed sore at another hospital (Grady). The nurse asked Gary to make him welcome, and almost immediately Gary wheeled off to say hello and chat awhile. (Fortunately, this guy’s sore probably isn’t bad enough to need surgery.) The case manager then came to the room, wanting to show us the Transitional Living Apartment we’ll be staying in this weekend, so we went off to the Marcus building to do that. Gary and I had hoped there was going to be some kind of separate bed for me, as I really didn’t want to be wakened at four in the morning by him shouting “One, two, three,” and rolling himself on top of me to change positions (he joked that he wouldn’t need any pillows to prone – he’d just use me), and it turned out that the couch has a fold-out bed. I’m trying to get resigned to not getting much sleep, as I’m sure that 4am “IC and turn” alarm is going to wake me and I’m not very good at falling back to sleep after I’m awakened. Gary told me if I could get resigned enough to the fact that I won’t fall back to sleep that I probably will fall back to sleep .

The apartment is very nice for being in the hospital – it is only one TLA at Shepherd right now, though with the expansion going on, they hope to build others. One long room had a kitchen at one end, an area with a couch and TV in the middle, and the queen bed at the other end. The large bathroom comes off the bedroom area. It has a shower bench, but has a regular tub, so I’m not sure if Gary will opt to try that or if we’ll be doing the bed bath method (which is all he’s gotten while here except for the couple of wet runs we’ve done with the therapists).

When we got back to Gary’s room, Brad and his wife Elaine were there. They also brought their impossibly cute newborn daughter. They said it was fortunate she was asleep; apparently, she has quite a set of lungs. Brad told Gary he had rearranged Gary’s office in order to to make it wheelchair accessible – removing one of the desks, re-stacking papers, moving the bookcase over. Gary is very grateful for that!

It was only a fifteen minute visit, as Gary had another therapy session scheduled. This one was with the therapy tech. She had him practice his hops along the edge of the exercise mat then do his stretches. After that, as he prepared for a transfer into his wheelchair in order to get on the rickshaw, he asked me for his glasses. Instead of just putting them on him, as I often do, I said we’d make it a balance exercise. He was game, and I stood in front of him and held them in my hand while he tried to get his balance and slowly reach for them. He was successful on the second try and put them on. “Everything becomes therapy,” he noted.

After that session, we returned to his room, where a rec therapist was supposed to come and meet with him. We got on the subject of outings, and she asked him if he was interested in any of the ones coming up this week. Turned out there is a Braves game outing, and Gary said he’d like to do that. She thought it might be too late to get him/us tickets (you wouldn’t have gotten me to a game before this, but I’d like to go with him), but she’d look into it.

She then said she was there to review with him what he had learned in his rec therapy classes, and that she would do more of this with him next week. She asked him various questions about accessibility issues: what problems did he think he might face in different situations and how he would solve them (at a store, in a public bathroom, at a restaurant); what details should he ask about a hotel he wanted to stay at (just because a room is claimed to be accessible, it doesn’t mean it would be for him). At the conclusion of this part, which had lasted about forty-five minutes, she said she was happy to hear that he’d never said that one of his solutions to finding a place not quite accessible as is, was “I would leave.” He said he wouldn’t leave because he liked adventures.

She then asked him if he had any questions for her concerning accessibility, and he started talking about his family, saying that they lived all around the U.S. and got together each year at one place or another, and how he’d always loved to travel to their homes – and at this point he got emotional and I came over and gave him a hug. He apologized to the rec therapist, telling her that he was a little concerned about how that would work out now – whether he’d be able to get into their homes, and once in, would he be able to get into the various rooms. The therapist offered a number of ideas, telling him it just depended on what he was willing to do, what he was willing to put up with. For example, if there were a steps into their homes, maybe he’d have to bring along a portable ramp or rent one from some place, or ask someone to bump him up the stairs. If the door was too narrow for his wheelchair to go in, maybe someone would be willing to carry him in, and then he or someone else could “break down” his wheelchair (take the wheels off, fold the body), bring it in, then reassemble it. They would not have shower benches, so maybe he’d have to bring his own (shipping his equipment there ahead of time), or take bed baths if there was someone there he’d allow to help him with that (I may not always be up to such travels – I took one trip by airplane in Jan. 2004, the first one since coming down with CFS, and though I was pleased at how well I did, it was not something I wanted to make a regular practice of). The main thing, the therapist said, was that he would just have to think things through ahead of time. I know his family will help him any way they can.

After the therapist left, he told me he reminded himself of a person at one of the counseling classes who had said that she was much more emotional now. He said he felt the same way, that any little thing could set him off – moments ago, when talking about visiting his family, earlier, when the OT had mentioned that it had been a quarter of a year since his accident and he had said that he hadn’t been home in all that time. I told him not to worry about it, that the same thing happens to me – that I could be set off by something I read in an email or card, or when I’m talking to someone (like a couple of times in talking to the city newspaper reporter). I told him I thought it due to fatigue and stress, that this was, after all, a life-changing experience – before, when he visited his family, he just walked through the door; now, he wasn’t sure if he could even get through the door.

I left for the hotel and did my thing. I also arranged for a massage, though I couldn’t get one scheduled until Sunday night, and it will be with a person I haven’t tried before. But I don’t think I should wait until next Tuesday, which is the earliest I can get in with the therapist I’ve usually been going to.

The only other thing I have jotted down about this day was that getting into the hospital bed and hoodling with Gary wasn’t very relaxing that night – the speaker phone of one of Gary’s roommates went off, a loud conversation ensued, and the other roommate who has been here awhile (or a member of his family) retaliated by turning up his boombox very very loud. Such mature behavior. I was going to complain to the staff, but the radio then got turned down. But the loud phone conversation kept going. I wished Gary good night and good luck.