June 27, 2006

Today’s therapy started out with the tech holding theback of Gary’s chair while he practiced wheelies. The session seemed worthless. Her idea of where the balance point was was quite a bit forward of where the substitute PT has said it was, and she hung on so tightly with the gait belt he got no feeling himself for where that point might really be. On the other hand, by her holding onto him so tightly, I didn’t have to worry she’d drop him (well, I almost didn’t have to worry – she wasn’t ready for him one time when he went up into a wheelie).

Next they went into the gym and he was first to transfer to the exercise mat from his chair. He wanted to try it without the board, and his PT happened to walk by at that time and she stayed and lended a few comments and a little aid. He did his best transfer yet, with the least amount of help, so we are thinking he won’t need the board for similar transfers, though for transfers of longer distances – like to the car – he will.

His next task was to put on a long-sleeved shirt while sitting on the edge of the mat with his legs dangling over it. Before he started, his nurse for the day shift came in with some Tylenol. He had had me ask her to get him some – he had a headache, he thought from falling on the back of his head yesterday and all the jerking around from the wheelies; we are going to have to keep an eye on that and make sure there is not a serious reason for the headache. He used getting the Tylenol down as preliminary balancing practice for getting the shirt on, since he put the pill in his mouth with one hand while holding a cup of water for washing the pill down in his other hand, so neither hand was being used to support himself upright.

Then he tackled the shirt. The tech offered no advice, just had him do it. It was quite a struggle to get the shirt on, but he did it, then got it off. She had him put it on again, as she said he’d cheated by leaning sideways onto the mat to do it (she hadn’t told him that wasn’t allowed); as he attempted to get the shirt on while staying completely upright, his OT walked by and offered a couple pointers – this made the task FAR easier for him. Afterwards, he confided he had been certain he wasn’t going to be able to get the shirt on, so he was really pleased.

The OT then took over, and the first task was to try to get an ankle over the opposite knee while sitting with his legs over the edge of the mat. For this task she had him use something she called a leg reacher (like a stiff lasso – the noose stiff as well). He couldn't quite get his foot up on his own, and in fact at one point he went over backwards and hit his head on the mat again, though not as hard as the last time. I cringed. I thought of sitting behind him, but he goes down so fast I think the result would be that he’d hit me hard, and that might be worse (for both of us) than hitting the mat.

Once he got in the proper position, she had him remove his shoes. This he did easily. Next he was to pretend that the mat was his bed, that he’d just transferred to it from his wheelchair, and that he was to get his legs from over the side of his “bed” into it. This he eventually did, though she is afraid he ends up needing to bend himself more than is allowed by his flap. Next he attempted to get a pillow between his ankles, but nothing worked. We are going to have to experiment with making ankle pillows (I talked to Joe later, and when he comes to visit this Sunday, he is going to bring up a piece of foam from our house to experiment with. My idea is to encase a thick piece of foam in cloth, and use velcro to wrap the cloth around his ankle. If it seems like this might work, are there any sewers out there who could easily sew such a thing? I could probably figure out how to do it, but if this would be easy for anyone . . . ;-))

Next he got into a prone position and did some strengthening exercises for his back – he needs those the most, his back muscles being his weakest.

After that we went back to his room. His case manager came by and gave us some bad news. She has been great, but this time she had messed up. She had forgotten to get him into Day Program when we wanted – right after his discharge on the 14th – and she couldn’t get him in until at earliest August 7th. This was a drag for a number of reasons. First of all, Gary feels that no way is he going to have learned by the 14th all he needs to know in order to be able to function at home. Second of all, *I* am not confident *I* will be able to handle being thrown into the home situation without any transitional period. We had been counting on having that two week period immediately following his hospital discharge during which time he would be at day program from 9 to 4 and then we’d be alone in the apartment just a couple blocks away from Shepherd until 9 am the next day. If any difficulties arose or we realized we needed to know something we hadn’t learned yet in order to function on a day-to-day basis, Shepherd would be practically right next door to help. And third of all, if he doesn’t get into the program until the 7th of August (and even that wasn’t a given), that will run into the beginning of fall classes.

We pled our case to the day program manager, but couldn’t get into the day program on the 14th – it’s all full (not just of Shepherd referrals, but of people from everywhere). The best that they could come up with is to extend Gary’s inpatient stay to July 28th and to try to get him in a private room in the hospital for that last week (not a given). I would live with him in that room 24-7, and we would be totally responsible for his care. (Oh, boy – living in a hospital is even higher than living in a hotel room on my list of things I want to do.) What we would do after the 28th isn’t clear. Possibly live somewhere in Atlanta until the 7th of August and then have him do the day program for one week. Or maybe we’ll decide he doesn’t need the day program at that time.

Sigh. We are bummed out that it isn’t going to work out as we’d originally thought.

In the early afternoon Joe called with an update on the house. Our first choice for the color of wood (“natural”), which we think is the color of wood we already have on the living room floor, wasn’t available, so we went with “desert natural,” a darker color but since it will be back in the bedrooms and not right next to the living room, it shouldn’t be noticeable that they don’t match. The plumbers weren’t prepared for the job they were supposed to do, even though Joe had clearly explained to them beforehand what needed to be done, so they will have to come back again.

After lunch Gary met with a recreational therapist down in the ProMotion Gym. She showed him a single-rider golf cart that those with SCIs use on the course – including the greens, because the weight of the cart is so evenly distributed. Some of these carts actually have a hydraulic seat that lifts the golfer up into somewhat of a standing position and then they can use two hands to swing the club. But she actually preferred the kind of cart where one golfs from a seated position; one is strapped in by a harness and sits way forward in the seat to swing. Those with injuries at a lower level than Gary, having the use of their abs, can rely on the harness and do the traditional two-arm swing, but many of those with SCIs do one-armed swings; she claimed it gave one greater accuracy though less power, and also that one might have better balance with a one-handed swing because one could grab the chair with one hand, lean forward, and swing with the other. (She mentioned this is the way Don Shapiro golfs – he is supposed to be quite well-known here; he is a T1 who gives golfing clinics.) She cautioned that playing golf this way can be frustrating – one’s swing is totally different – but one can get back into the game.

There is also the matter of getting the cart. Some golf courses have them – she is going to get Gary a list of the courses in Alabama that have them. As a new such cart costs around $8000 dollars, if no course close to where we live has one and Gary wants them to, he would have to “lobby” them for it, saying how it could bring in more business from those who would make use of it (disabled people, elderly people); the course could charge a rental fee. Gary was skeptical if the courses around home would think it cost effective.

His other alternative if he wants to do any golf would be to just go to the driving range and swing from his chair. She showed him a couple adaptive clubs – not being familiar with golf equipment, the only difference I could see was that they were shorter. She put a big “body brace” (like a giant version of his chest strap) on him and had him swing the clubs. He could see that he would definitely need to use a one-handed swing because of balance issues, and in fact he said he could see that even with the one-handed swing it would take a lot of balance.

She also showed us hand cycles while we were there – like bicycles but “pedaled” by hand.

I asked him if seeing that equipment and giving it a try had made him think he might take up golf again. He said he wasn’t sure he could see him doing it – it would be a completely different game.

We went back to his room, and a few minutes later Jamie from critique group came up and spirited me away for a while. First we went to Casa Grande and she got a tasty-looking vegetable fajita with a side order of black beans. She said the food was excellent, so I’m sure Gary will want to go there when he is cleared for that sort of activity, as he loves Mexican food. Next Jamie and I went to the Fernbank Museum of Natural History to see an IMAX film. They were showing “Wild Safari” and “Dolphins.” Since Pierce Brosnan was the narrator of “Dolphins,” the choice was clear ;-). We both enjoyed the movie. I learned some new things, like that dolphins call each other by name (the name defined by a specific series of vocalizations) and that they sleep with one eye close, only one half of their brain sleeping at a time! (With the other eye, they look for predators. Another reason they can’t be totally unconscious during sleep as we are is because they need to be conscious in order to decide when to breathe.) After the movie, we decided to go back to my hotel room – for one thing, I needed to get my dinner started. Naturally, we got a little lost during the drive, but Jamie knew how to get back to Shepherd from I-75-85, so we did that. I needed zukes, so we made a stop at the Fresh Market. Jamie thought the place was cool and declared we needed one like it in our town. Of course, in our town it would probably go out of business (Peg says cynically). After I got my dinner started we watched another episode of Remington Steele. You could probably have guessed that, as we had spent the time on her previous visit watching two episodes.

After that, Jamie had to dash of to the airport to pick up her family. She dropped me off at Shepherd, and I went back to Gary’s room. I told Gary how we’d spent the day. “Pierce Brosnan narrating a film and then an episode of Remington Steele. It can’t get any better than that – a perfect day,” he teased me.

He told me what I’d missed of his day, and I felt a little twinge at missing it, though I’d had a really fun time with Jamie. He said his PT had taken him outside for practice with wheelies to get up curbs. It turns out she’d expected me to be there (“What do you mean she isn’t here – Peg’s always here,” the PT had said to him), as she had wanted to “check me off” on that skill, as it is one I need to be checked off on before the two of us are allowed off Shepherd property by ourselves. So I will have to do that another time. (Basically it involves helping him up and down curbs, if that becomes necessary, and it should be done in a particular way for safety -- and also not to strain myself unnecessarily.)

He’d also had his first “seating clinic.” This was where he went and discussed what kind of chair he wanted. The person he spoke to about it advised him not to get the power-assisted wheels. They weigh 25 pounds each and would be a lot of hassle, the man claimed, to cart around and get on and off (and getting them on and off would also involve a number of transfers on Gary’s part as he couldn’t be sitting in the chair while changing the wheels on it). So if Gary gets a second chair, it will be a power chair. He remembered after the clinic that Phil had offered the use of such a chair, and the PT said that using Phil's chair was an option and that if the chair was brought up to Shepherd they could try to modify it to fit Gary better.

Since Gary will definitely be getting a manual chair -- that will be the one he mostly uses -- the clinic guy went through the various features of manual chairs so Gary could make preliminary decisions about the one he wants for his own. Among other things he decided on were the dimensions, the color (Gary chose a bright blue but may now be chickening out on it), and the addition of side flaps to the chair to help keep him from sliding to the side of the chair as he tends to do in the one he currently uses.

The guy also recommended Gary not get a van in which his chair would be locked down in the driver’s side – he thought that too dangerous. So now Gary is thinking he may get a van with a lift or a ramp so he can get his wheelchair into the van, and then he would transfer from the wheelchair into a regular driver’s seat (well, not quite regular: it would swivel around to face the back so Gary could transfer into it).

And that summarizes Tuesday!

Oh, except to mention Gary has a new roommate. With a speaker phone. Turned very, VERY loud.

Sigh