December 19, 2006

This morning (Tuesday) I was frantic, for a reason that had nothing to do with Day Program. I realized when I woke up that the changes I had made to my novel on Sunday I had saved to my USB drive but had forgotten to save them to the computer. (I like to save documents to at least two separate places, in case “something happens” to one of them.) So while Gary was getting ready for Day Program and in between doing things I needed to do for him (I do a little more for him on Day Program than I now normally would at home, just so we don’t have to get up so early while on the program) I tried to open the WordPerfect file that my story was written on, and it wouldn’t open! The file had somehow become corrupted. This has happened before, but I had always been able to use a “trick” I picked up on the Corel WordPerfect newsgroup to get the file to open and then with some work (usually a few hours!) “fix” the corrupted part of the document. Well, the trick wouldn’t work. I was trying to get to about page 275, and the document wouldn’t let me get there – I couldn’t scroll to it, couldn’t use the “Go to” dialogue box, nothing. The program kept shutting me down. So then I thought I better try to remember the changes I made. I went to the most recent document I had before that – I have learned from the past that I need to save a separate copy of each day’s changes, so if I lose a document, I “only” lose a day’s work – and tried to write what I remembered. But it was time to go to Day Program.

First up for him was practicing curbs, and he and a therapist started with the four-inch-high wooden platform in the gym that they use for that, the tip bars on his chair taken off. I was so upset about my file that I fired up my laptop right there in the gym and started typing the changes I could remember, stopping each time Gary approached the “curb” so I could cheer him on – talk about your divided attention. I thought I was able to pretty much reconstruct Sunday’s work (it is amazing how much time I can spend thinking about how to write something and have so little to show for it), though I knew I had said some things in a way I liked better on Sunday. Meanwhile, Gary was doing great at the curb practice. I was astonished, seeing that we haven’t practiced curbs at home at all. But as he told me, he’s much stronger now, plus, the technique is greatly a matter of timing (push on the wheels, push on the wheels, push on the wheels, pop the wheelie to get the small front castor wheels up the curb, immediately lean forward and push hard on the big wheels to get them over the curb as well), and he has had some practice at that even in getting up the small rise at the entrance to our house. So he got to the point in the gym where he was making the four-inch curbs about fifty percent of the time. Obviously that means he’s not at the point where he would do them by himself – that other fifty percent of the time he could land on his head – so the next step was for me to learn how to spot/help him with these. So I took the place of the therapist. I had my hands lightly on the push handles (the handles on the back of his chair), the idea being not to help him if he didn’t need it. We did a couple that way, and I wasn’t providing any lift at all!

Next came six-inch curb practice, and that was harder for him, using his momentum to get those back wheels up that height. He only made a couple of those, with help from the therapist. She didn’t have me try any of those with him. She also reminded him that when he went down something of that height, at the time his large wheels went off the curb and were on street level he should stop his chair and make sure that he and the chair were balanced – if he just continued to push, that momentum he had going backwards might cause the chair to flip if he didn’t have his weight forward enough.

Next he was to go outside and practice on a “real curb.” So I shut down the computer and followed him (I was confident that I had at least recovered most of what I had written). Unfortunately, a van was parked where they usually practice curbs of about four-inch height, but we found a curb nearby of approximately six inches, and Gary did a couple attempts at those with the therapist. Again, he would not be doing those on his own, and in fact at this point he wouldn’t even attempt to take them in a wheelie *with* me helping. Fortunately he never has to do curbs around the university or when he eats at the places around there, but so that he is prepared in case he does meet up with some, we reviewed the technique of what I or another person would have to do to assist him. It would essentially doing the above technique, but in “slow motion.” The tip bars would be off, and his chair would be right at the curb (no moving approach for this). I would hold his push handles (firmly!). I would tell him I was ready, and he would push on his wheels to pop up into the wheelie and get his castor wheels up on the curb. The he would wait until I said I was ready, and then he would push on his wheels to get them up on the curb while from the back I would be pushing on the handles to help get him up the curb. To get down the curb, he would be backward to it and would back down it gently while I would hold onto the push handles and have one hip on the back of his chair for it to rest on, both my hands and hip there to make sure the chair was going slow and easy and wasn’t going to go over backwards.

Next we had a session with the OT, and we asked her about how Gary should do his skin checks of his butt and back while traveling. She thought a moment, saying, “I appreciate the thoroughness you two have, but you make me have to think more.” Evidently no one else had ever asked her such a question. She suggested he look into buying some kind of small travel mirror if a hotel mirror couldn’t be used to his advantage and I wasn’t there to check the parts of himself he can’t see.

Next he did more practice at dressing in the chair. One new tip she had for him was to really push the material of the crotch as far under him as possible, "overcompensating," because the hard part is getting that middle material up in the back.

Getting pants on while in the chair is difficult for most paraplegics. (She told us that one of the patients said he was going to look into joining a wheelchair-accessible nudist colony so he could avoid the problem.) The advantage of being able to do so in a reasonable amount of time is that it saves you a couple transfers, i.e., transferring onto the bed to get your pants on, then transferring back into the chair.

While Gary was getting his pants on, the OT asked him how he liked the adjustments that had been made to his chair, and he said they were working out great. His back feels much better now that they have raised the back of his chair.

Next she went over “balance issues.” She said while at home he could work on his balance by sitting on the edge of the bed (me there) and reaching for things on the floor or out to the sides. She suggested that a couple times a week he should sit on the edge of the bed, me behind him to make sure he didn’t fall over backwards, and practice “Tai Chi”– like movements: slowly moving one arm at a time to the front and up and out to the side and back. In fact, she thought it would be good if he took an actual Tai Chi class, that the arm movements would be good for his balance and range of motion – and they’d be relaxing (she said as she told him to relax his shoulders!). If he takes such a class, she told him to sit forward in his chair (me standing behind him to make sure he doesn’t lose his balance) so that he isn’t resting on the chair back.

She left for a moment and I suggested he try some of the balance exercises the therapists were having him do last summer – in particular, pressing his palms together in front of him at chest level with elbow raised to the same height (kind of like the “prayer” position) and then raising his arms keeping his palms together. He was able to do this much better than last summer. In fact, he thought I was holding him, but I just had my hands lightly touching him.

Next on the agenda was a meeting with his doctor, during which Gary had wanted to discuss urinary issues, but the meeting didn’t turn out to be much. The doctor said that the tests had shown Gary does have a urinary tract infection and wrote him a “pre-emptive” prescription for an antibiotic – that is, they hadn’t cultured his sample yet to see what organism they should be fighting, but they wanted him to start on this antibiotic anyway. Gary tried to ask about having a urodynamics study done and about the drugs that people used to stop “leaking” if the leaking was due to bladder spasms, but the doctor didn’t want to talk about that and was curt, saying he wanted to go one step at a side. (This doctor I’m sure is excellent as a rehab doc, but neither Gary nor I have ever been impressed with his bedside manner.) Gary later decided he’d just talk this issue over with a local urologist.

Another thing I had wanted Gary to ask the doctor, which he did, saying “Peg wants to know . . . ” :-), was about all the coughing he does while he is eating or taking pills. He says he feels like there is a “pocket” in his throat where food and pills get stuck. Gary wonders if such a pocket could have been created as a result of the intubation that was done to him in Birmingham soon after the accident. The doctor told the nurse to have one of Shepherd’s speech therapist come and do some tests to see what the problem was. I guess the nurse emailed the therapist, but he or she never came and saw Gary. Supposedly the nurse will now refer him to a speech therapist near home, so I hope she follows up with that; otherwise we’ll have to get on Shepherd about that! I can’t help it – I find the frequent coughing noises he makes during meals a bit irritating. I told him I would never know if he is really choking on something and needs a Heimlich maneuver. He told me that if he was really choking, he’d hold up one finger, then two, then three – like he was taught as a child to do if he was drowning in water. That set us to some black humor laughing.

He was then supposed to practice “bed mobility with care giver,” i.e., with me. About the only thing he really needed practice on in that regard was getting to a sitting position from the supine position without rolling to the side first. He decided he wasn’t going to use that technique much and didn’t really want to spend a whole lot of time on it, so we practiced it a little and then he did his stretches on the mat. Then he went off to do his IC, after which we had lunch.

Oh, perhaps I should mention what is different about using the hospital bed as opposed to a regular bed. In the hospital bed, he can use the hand rails to help him roll from side to side while trying to get his pants on over his butt or for turning himself during the night. He can use the electronic controls to help sit him up for getting his pants on over his lower legs or for bathing himself in the bed (as much as he is able to reach). But he says using the double bed wasn’t nearly as difficult as he’d thought it would be. He can do the turning and sitting up without the use of rails or controls when he has the room of the double bed – it’s just that doing these things is a little easier in the hospital bed. In traveling he wouldn’t have a hospital bed, so he needed to get weaned off it.

After lunch he was supposed to meet with the case manager for a half hour and then the rickshaw was scheduled in for a half hour. The case manager stuff didn’t take very long. Must not have been too exciting cuz I didn’t take any notes and I can’t remember anything in particular ;-). I then set up the weights on the rickshaw for him. After he finished that exercise (takes at most ten minutes) I suggested various things we could work on – floor transfers, low-to-high transfers. Instead, he made a phone call to the Atlanta Symphony Orchestra to find out about the handicapped parking situation (they said the parking garage was very convenient to the Arts Center where the concert was to be held), and then he went down to the apothecary to get his prescription filled. I let him get away with this sloughing off of his therapy ;-). While he was being lazy, I was back on my laptop still trying to see if I could recover the corrupted file. Gary suggested I try opening the doc in WordPad. That worked, kinda sorta. All the words appeared, but so did a lot of strange symbols, taking the place of punctuation and God knows what else. It seemed a daunting task to figure out where the revisions had been made, but it could be done if I really wanted to spend the time on it – which I would have because I am compulsive that way. But then I recalled another strange trick I had heard about, which was to open the doc in the spreadsheet program Quattro Pro. So I did that, and there were all the words, minus the strange symbols that had appeared in WordPad but without any punctuation. Okay, this was a bit better. I could at least read what had been written without too great a difficulty, and so I could just read it sentence by sentence and compare it to my most recent version of the file before the corrupted one. What I really would have liked to have done, however, was just copy the revised section from Quattro Pro and paste it into the most recent uncorrupted WordPerfect document of my story, but when I copied the “cells” of Quattro Pro and pasted them into WordPerfect (or WordPad), I got one big *vertical* column of words. I then had the thought, what if I pasted it into NotePad, a text editor which strips all formatting and “hidden data”? And this worked! This made it easy to compare the revisions that I had re-composed from memory with the revisions that I had made Sunday (sans punctuation), and I was able to recover everything I had done Sunday. Whew!

Oh, and by the way, it didn’t work to try to open the corrupted document in Notepad without going through Quattro Pro first – I got tons of strange symbols when I did that. I have no idea why it worked to go through Quattro Pro first.

Okay, back to rehab. Next was the major task of getting back into the wheelchair from the floor, whether one has ended up on the floor intentionally or not. First Gary positioned himself sideways in front of the chair with his legs bent so that his knees were slightly to the inside of one of the wheelchair “legs,” (i.e., so that his knees were to the inside the castor wheels, so that when he pushed up to his knees he would be directly in front of the chair). Next he was to push himself up with his right hand on the chair leg closest to him and his left hand on the floor, the goal being for him to end up on his knees with his chest on the seat of the chair to keep him balanced on his knees. While he was doing this pushing up, the spotter (first the therapist, then after he did it a couple times, I was the spotter) keeps her hands on Gary’s waist, either to help lift him or to keep him in place once he was on his knees (since, obviously, he doesn’t have any leg muscles to help keep him on his knees). We did it a few times and I found that it varied how much help I had to give – sometimes very minimal, one time I had to use a bit of effort – but it was never a major effort. Mostly I helped keep him in position so he didn’t slide back to the floor (if he’s not perfectly balanced on his knees, they collapse to one side and his body follows them down). Now, after a rest, from this position (on knees, chest on seat of wheelchair – seat cushion removed to make this transfer easier), Gary was to put his hands on the wheels of his chair and do a (mighty) push up on them, walking his hands up the wheels, keeping his neck extended, the goal being to get his chest on the back of the chair (and not his neck or his face!). The spotter puts her hands under Gary’s knees before he does this push and supplies whatever force he seems to need to accomplish this next stage and also holds him so he doesn’t slide back down while trying to walk up the tires. The PT wanted me to use as little force as necessary – sure, I could have helped heave him up – but she wanted him to do the work (after all, it could happen he could fall out without anyone around to aid him). The amount of force I had to apply again varied, but it was never a huge amount – Gary did the vast majority of the work of the push up, while I mainly held him in place while he walked his hands up the tires.

The last step, after a rest, was for him to take his right hand from the tire and put it on the seat in front of him but to the left side. Then he twisted his head and shoulders to the left, trying to “flip over” to get his right hip on the seat and eventually his butt on the seat. As the spotter I was mainly maintaining the progress he was making, holding him so he wouldn’t slide back down off the seat.

So, as Gary states, it is a difficult maneuver. BUT, he wasn’t at all sure he’d be able to do it at all, even with my help. But we met that goal and are confident that if the need ever arises, the two of us can get him back in the chair this way. The PT told him that if he ever falls out of his chair in public, this is the way she wants him to get back in the chair – not by “cheating” and having two people do a “two-man lift” to get him back in (that is, one person holding him around his chest, the other person holding his legs, and the two of them lifting Gary into his chair). Gary said, “Not even if it’s two big football players?” She said no, but I’m not sure Gary wouldn’t take the easy way out ;-). If there were two people available, she would want one to play the role I was playing, and the other person to stand behind the chair to make sure it didn’t tip over backwards with all the heaving he was doing (if there is only one person, the chair is preferably situated so that that wouldn’t happen, like putting the back of it against a bed or couch, though a wall wouldn’t work because his head ends up behind the chair for a brief time). The second person would also ideally make sure Gary didn't "face plant" (end up with his face on the back of the chair) or end up with his neck on the back of the chair -- this they would do by keeping there hands near his chest. This might happen if, for example, he didn't push up high enough or didn't have his hands in the right position or didn't keep his neck extended.

Anyway, we are delighted we were able to do this. You might remember a therapist tried to teach us to do this last summer, and after our attempt she said, “You’d better just call 911.”

Last on today’s agenda was a scap class – working on the scapula muscle. We all took therabands and did punches, “diagonal pain,” chest flies, external rotation, diagonal punches keeping the elbow at shoulder height, “thumbs-up diagonal pain,” and lat pulls.