June 29, 2006

Today must have been National Bad Driver Day. You may recall I had to be at Shepherd at 8am for what they call a “wet run,” meaning Gary was going to go through the process of taking a shower, trying to do as much of what is involved on his own. I pulled out of my hotel parking space around 7:30. I turned a corner in the parking lot to get to the exit from the hotel to the street. I burst out with an “oh, crap!” at the sight that greeted me and slammed on my brakes. Nerve-wracking increments of time later, Mr. Not-Awake-Yet finally registered that he was about to hit my car -- straight on. At what seemed the last moment he swerved back into his own lane. Needless to say, I was rattled – that had been much too close. Later in the day, I sat in an intersection on Peachtree to make the left turn into the street that led to Fresh Market’s driveway. The light turned yellow; I couldn’t make my turn until it turned red. Just then, the guy in the right lane on Peachtree traveling the opposite direction decided to make a right-on-red. We both hit the brakes; he finally let me go first. Then he followed right behind me and honked his horn at me until I turned into Fresh Market. Someone needs to tell the guy that right-on-red is only allowed if cross traffic is clear, and I had the right of way – what did he expect me to do, hang out in the middle of the intersection until everyone who’d wanted to make a right-on-red had done so? Later, when I pulled out of my parking space to leave Fresh Market, when I was nearly out, the SUV parked behind me decided to leave without checking behind him. He didn’t stop coming and I had to throw my car in forward and get back in my parking space. When the guy was half way out, he threw his car in forward, and went out that way. ???? Finally, when I went home that night from the hospital a number of trucks drag-raced past me on Peachtree. Then came three motorcyclists zooming around, cutting lanes, performing various antics. They finally pulled off the road into some eatery, but just as I was about to pass by, one of them zoomed out right in front of me doing a wheelie and causing me to have to slam on my brakes. I was ever so glad when I was finally able to get off the road that night.

Back to the day’s activities. Naturally (she says sarcastically) I had slept lousy, worrying that the three alarm clocks I had set wouldn’t go off. (They did, of course.) I got to Gary’s room about ten to eight, having to lug my stuff (including my laptop) up four short (but not short enough) flights of stairs because the parking garage elevator wasn’t working. Gary was finishing his breakfast, and I started in on the rice I had brought. I told him I hoped the PT and OT weren’t going to be late if they were making me be there that early. At ten after eight they hadn’t arrived, and I told him we should get him hoyered into his chair and go look for them. “But I’m naked,” he said. I told him I knew that, and that I thought it would be very effective for him to go wheeling down the hall in his current state of undress – they would find his OT and PT very quickly for him.

The therapists showed up just after that – they had been trying to figure out the best way to align the shower chair in the shower for him. We got a gown on him, and he did a bed (depression) transfer with their help– an advanced skill, as the bed is such a soft surface. He wheeled into the bathroom, and they guided his transfer to the shower bench. In the shower he soaped and rinsed everything but his lower legs and feet, which I did. In the course of the shower, he managed to get all three of us “aides” wet, he being in control of the hand shower fixture. He claimed it was an accident, due to his problems with balance. We suspected maliciousness ;-). He dried most of himself, me doing his lower extremities again, and then his therapists helped guide him back into his chair. The PT commented he was doing his transfers much better than even the previous day. He told her watching me do one yesterday had helped (I puffed up with pride), “And besides,” he told her, “if she can do one . . .” I gave him the evil eye.

He did a transfer back into the bed. Since his dressing had gotten wet, it had to be changed. Also, his skin wound had to be checked to make sure there hadn’t been any change in it from the shower (mainly, from the transferring to and from and sitting on the wooden surface of the shower bench while unclothed). While changing his dressing, I noticed a round red spot to one side of the wound that I hadn’t seen before. Also, the one seam that hasn’t healed nicely looked like it might have opened up a bit more. Gary also informed me that the skin PT (I’ve been calling her “the skin nurse,” having gotten mixed up on which person held which title) had found another hole in his wound, on the side opposite where things hadn’t been healing up as well as we’d like. (I hadn’t noticed that hole because the nurses had taken over from me the care of the wound after last weekend.) It turned out that that area had abscessed because of the sutures the skin doc had used – apparently the company that supplied Shepherd with their dissolving sutures had changed their sutures and hadn’t informed Shepherd of that. For months Shepherd has been having trouble with patients suddenly having abscesses of their skin flaps, caused by their dissolving sutures not dissolving. Unfortunately Shepherd didn’t figure out until after Gary’s surgery that it wasn’t that these patients were unusually sensitive to the same sutures Shepherd has been using all along, but that the sutures themselves were different.

With my cell phone camera I took a picture of the main wound since it looked different after the shower, as I didn’t trust my visual memory to keep track of any further changes (I decided not to publish that picture to the blog ;-)). We called in his nurse in order to make her aware of these changes. This pressure sore stuff is so frustrating. I’d hoped with the surgery the troubles would be over, but the area is still so fragile.

After lunch we met with a rec therapist. This one went over gardening strategies with him. She said she’d heard he liked to garden. He said it was more a matter of liking to eat the results (he’s a tomato and pepper grower). She took him out to the garden here and showed him the in-ground raised beds they’d made, as well as container “beds” raised up on legs so they can be wheeled under. She talked about using containers, either raised up high enough off the ground (on bricks or whatever) or hanging from poles. At home he often grows his plants in containers (and I did some of that as well), so we are familiar that. And I am familiar with books on container and accessible gardening, on account of my CFS, so this wasn’t new to me and I know where to find more ideas. One neat thing she showed us were adaptive tools – telescoping trowels and forks suitable for small plot/container gardening. She also suggested looking into kids’ tools, as they were light. She mentioned that Fiskar’s tools have the approval of arthritics, as the tools are lightweight and operate on a ratcheting system for ease of use. She also mentioned that there are vegetables bred for containers, which I was aware of but I’m thinking might not be necessary. Tomato and pepper care aren’t all that involved, and if he wants to still grow his indeterminate tomato plants, we can probably find someone who’d be willing to stake them up for him when they reach the proper stage (he uses these big circular wire cages, so I’m not sure I could do that for him).

After that we went back to his room so the skin PT could check on what was going on with his wound. She told me I could do another silver nitrate application over the weekend, and that the accuzyme for debriding should be used twice a day, either by me or the nurses. She wasn’t sure what that new circular red area is about. An observing nurse said maybe it was a rash, perhaps an allergic reaction to the tape that has been being used on him. All we can do is keep an eye on it and hope it resolves or at least that it becomes more clear what the cause of it is.

The nurse stayed after the others had left and went over with us the signs and treatment of dysreflexia, which I already knew from my class. She also went over assisted coughing, which I’d done a little bit on him in Birmingham (the nurses and techs doing most of that). With that, she cleared us for a push pass from the nursing team. The OT had cleared us from her perspective, the PT from hers, but that hadn’t been put in the computer yet. The final step would be getting the doctor’s okay. Then Gary will be free to go anywhere out of Shepherd he or I can push his chair to.

Next Gary had a session with his tech. She started him on the tabletop “hand cycle,” which you operate by rotating your arms (see http://www.rehaboutlet.com/stationary_bikes.htm, for instance – the Endorphin is the one he used), giving you a workout and exercising your back and arm muscles. This was obviously work. After a couple of minutes he stopped and looked at the tech plaintively. “Are we there yet?” he asked.

We weren’t.

Every couple of minutes he would stop and let out a big sigh. I couldn’t help but laugh, even though I knew he wasn’t doing it to be melodramatic. “I’m just letting you know how hard I’m working,” he joked. I assured him I knew very well it was hard work for him.

After that he went on the rickshaw exerciser for three sets of fifteen. Next he got onto the mat in order to finish the session with stretching. I think he did an illegal move in getting into position. He was supposed to roll over so the tech and I could get pillows under him to cushion his flap. I was kneeling next to him on the mat, and as he rolled he grabbed onto my butt to help himself over. “Whatever works,” he joked.

After that session his PT came with a new set of power-assist wheels. She demonstrated how the equipment worked, how to get the wheels on and off, then let him try them. We went to “The Blue Carpet” that had given him quite a workout before. “Hey, all right!” he exclaimed as he took off up the sloping tunnel, doing it with relative ease. We next went to the parking garage where he tried the ramp that’s given him fits. He did it better with these wheels, but it still wasn’t an easy maneuver.

When we went back to his room, we found mail – from Marilyn Foreman, Norman and Margaret Groteluschen, and my sister Janet. As always I feel amazed and humbled when people express their reactions to the blog in their letters.

I also found they’d left my schedule for family training, to take place on July 6th and 7th. We’ll have to get through the shower routine by ourselves, with the therapists only observing (actually, I’m surprised they have this down for the 6th already, as I haven’t yet been allowed to assist him with a depression transfer from even the easiest surfaces – chair to exercise mat – and it seems to me the shower transfers will be harder – done in the confined space of the bathroom, the final transfer taking place after the shower when the surfaces have been wetted down (I will have to make sure both he and the floor, etc., are as dry as possible). After that I’ll have a “Therapeutic Rec Lecture.” Since I’ve already suffered through three of those with Gary, I figure if it’s on the same stuff I’ll just pull out my notes and answer all the questions the TR asks. Since the majority of the time of these lectures was wasted on needlessly asking questions and making the audience guess the answers (like, “What areas do you think the ADA covers?” Why make us guess that????), I figure that if I just answer the questions, using my notes, I can reduce the lecture from an hour to about five minutes ;-) (Gary laughed, then said, “That would be mean.”). Next on the schedule is a lunch break, then a “Wheelchair repair and maintenance” lecture. Finally, for two and a half hours (!!!!) there is an “Emotional Adjustment” meeting. (Seems to me that is coming a little late in this process.) The next day is also filled with family training, but what it entails is mostly unspecified on the sheet I was given. The day will finish with a family outing – we will be going to a sporting goods store near the Target I went to.

Just before I left for the chiropractor’s, Joe called. He told us the plumbers had come and were done for now. Next on the agenda is the putting in of new floors and the power washing of the walks, the driveway, and the exterior of the house. Painting is on-going (I didn’t realize the master bedroom was being painted too – “Well, you can’t put in new floors and keep your dirty old walls,” Joe said. After a pause, he added, “At least, I won’t let you.” Good ol’ Joe, keep us in line.) Later in the evening, Joe gave us the final price of what the new garage is going to cost.

I felt so sorry for one of Gary’s roommates today, the one we have been friendliest with (the one his wife labeled as “The Redneck”). He was in a lot of pain, and it was really dragging his spirits down. As I said before, I am so thankful Gary doesn’t have pain like that.

All for now, except to pass on an email Mary Ellen Rudin sent me:

I thought I might
add for the topologists that Madeleine Jones, Burton's wife of almost
60 years and a close friend of most of his mathematical friends died
at age 88 in California near their daughter Marian and her ashes
will be scattered near Burtons and their two other daughters in
La Grange Texas the small town where Madeleine was born.
It was time in this case for she had been ill for many years.
My best to all. Mary Ellen Rudin

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.

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

June 26, 2006

The skin nurse came in this morning from her weekend off and checked Gary’s flap. She told him I’d done a great job with the silver nitrate and such. That was a huge relief, as it had made me a little nervous to be “in charge” of the various procedures involved in his flap care.

This morning after the OT helped Gary transfer from his chair to the mat and put him in a stretch, she said she had something for him to sign. She left to get it, and as Gary laid there flat on his back with his left foot crossed his right thigh, I joked that he was in no position to refuse to sign anything. “Ve haf our vays,” Gary said. I said her way would only have to be to leave him there on the mat until he signed, as at this point it would be impossible for him and me to get him back in his chair.

Fortunately all she wanted him to sign was his therapy goal sheet, and she ran down the list with us. Among the items: assisted coughing (him learning how to tell someone else how to help him cough if he ever needs it); bed mobility (rolling and turning in bed); wheelchair management (learning how to take the wheels off and put them on; where to take the chair if it breaks); range of motion (doing as many of the stretches on his own as he can); eight hours of proning; skin care (him checking everything he can see, me checking the rest); special instructions related to the care of his flap; depression weight shift for one minute (which he can do, but it takes its toll so he needs to work on his endurance); side to side weight shift without leaning on something (at this point he needs to lean his arm on something like a chair); depression transfer to/from chair, mat, car, bed, bathroom equipment; activities of daily living (bathing, drying what he can reach (I’ll do the rest), dressing what he can reach (I’ll do the rest)); balance training, which will assist with the attainment of many of these other goals; bladder training; bowel training; equipment knowledge (what he’s getting, who the vendors are, who to contact if there are any problems (there will be one person at United Seated Mobility who is responsible for coordinating the purchase of all of Gary’s equipment, and he will be the person Gary would contact if there are any problems)); strengthening the upper body; family training (i.e., my training, and that is ongoing); van evaluation.

After taking care of that paperwork, Gary then practiced skills needed for turning in bed and placing a pillow between his knees. The OT had him balance up on an elbow while in a side-lying position. From that position she had him reach to the front and back while holding a dumbbell at arm’s length. Then she had him practice moving his legs around while in that position, then sticking a pillow between his knees (we’re still not sure what is to be done about padding the ankles). For some reason he was much better at all of this than he was last Friday. The OT asked him what the difference was. He said it was because he’d had the weekend to rest. We laughed.

The PT took over and had him maneuver around the mat – moving his legs, sitting up. Again, he did much better than last Friday. They then went through his stretches, the goal being for him to do as many as possible with only the assistance of the chain loops, not another human. She thought it might be possible that he’ll get flexible enough that he can eventually do all the stretches on his own.

Next he practiced opening various doors by himself – he did great. Since we’d told her that he had trouble with the ramps last weekend, we went to the garden ramp. She watched him attempt going up the ramp and gave him tips. It turned out that by leaning farther forward in his seat (his chest strap firmly in place), he accomplished the feat much more smoothly – no wheelies.

Therapy sessions over, we went back to his room. He pointed out how some nurse had written “G. Man Gruenhage” on one of his supplies. As you might suspect, everyone who’s been involved in his care has mispronounced his last name when they come in and introduced themselves. He’d then always told them to call him “Gary.” Some of them call him “Mr. G.” But he rather liked this new designation of “G. Man Gruenhage,” so when a new supply item came in a short time later, I wrote that on it in magic marker to make him laugh.

I’m not sure what he’d think if people in the math department started calling him that, though ;-)

After lunch he had another therapy session, this time with his tech. They started out with “the rickshaw exerciser” (see http://www.wisdomking.com/product17194c90020.html for a picture) which “develops the specific arm and shoulder muscle groups used for transfer in and out of a wheelchair.” Then she helped him transfer to the mat and they went through his stretches again. For some reason everything is much more awkward with this tech. She makes me neurotic – I always have the urge to question her about every little thing.

Maybe I should have questioned her about one thing though – at one point she moved Gary’s legs for him in such a way that he fell back onto the mat and hit his head hard. I could see it in his face that that had hurt, and once again I felt like bursting out with “Just leave him alone.” Gary told me later these things were bound to happen; I told him I just didn’t like seeing them happen to him. He said be prepared, because there will no doubt come the time when we have to call 911 to get him back in his chair, since he won’t be allowed to even attempt such a skill until his flap is healed and I certainly can’t lift him back into his chair.

Anyway, back to the session. He was supposed to practice wheelies with her, but fortunately we ran out of time – I don’t think I could have taken having her balance him backwards on his chair without his tip bars in place ;-)

We made our escape, going back to his room so he could have some of his protein drink, and then we went back out to the parking garage so I could get some bottled water from the car. He practiced his door opening, then said, “See ya,” and zoomed down the ramp. We met down by the car. On the way back to his room he practiced going up the ramp that had given him particular problems yesterday. He still couldn’t get up it by himself, even with leaning over, so I had to help. I asked him what he thought the solution for that problem was. He said, “To get stronger.”

Back in the room, we prepared to give him a haircut. I laid a sheet down in the bathroom connected to his four-man room, he wheeled over that sheet, and then I put another sheet around him. I then discovered he wanted *me* to cut his hair. I thought he was crazy, and told him I couldn’t – he should do it. He insisted I could do it. So I used the trimmer on his electric razor, and after he showed me a little of how he did it, I attempted it and thought I did the sides fairly decently. I started on the back and had it going pretty good, but when I was nearly finished he decided to take some scissors and do more with the front of his hair. This was a mistake because he moved his head just as I was finishing shaping the back of his hair, and because of that movement I removed about an inch of hair at the bottom of the very back of his head (it could have been worse, I suppose – I could have cut a hunk from the middle). Of course, that meant I had to trim the rest of it to that length, and I don’t think it looks that great now – it looked much better before that little disaster. Fortunately, he can’t see it ;-), and more fortunately, it’ll grow back. The PT came around later, and looking at him from behind, told him “Great haircut.” I scrutinized her to see if she was being sarcastic, but she didn’t seem to be. However, I suspect she was being kind.

Anyway, if you see him and think the back of his hair looks strange, you now know the reason.

The reason the PT had come was to ask if Gary had any pain. He told her he had that “line of discomfort,” but that it was never really painful. He told her he’d asked his doctor about it, and his doctor had said it was common – in fact, he said he himself had experienced the same sort of thing for several months after his own accident, but that it had gone away. The doctor also said that if it did become painful, that there were medicines for it, but that it was best to avoid taking them if possible because of the side effects.

Mail call. Thanks to Michel Smith, Norma Kramer, Mark and Dottie Meschke, and Bruce Noda. As always, each piece of mail and email we get means so much to us. Just taking today as an example, getting mail from Michel reminds us of how supportive he and the math department have been; the letter from Norma reminds us of the love of our families; Mark is a childhood friend of Gary’s, Bruce is a friend of Gary’s from his graduate school day, and their letters bring home to me how many people Gary’s life has touched.

And also how many other lives have touched Gary’s. Bruce mentioned in his letter that another memorial for Gary’s good friend Ward will be held at the end of July and said if Gary liked, he could compose something to be read during it. Ward died a couple of weeks after Gary’s accident. When I’d first learned of it, I hadn’t been sure whether or not to pass the news on to Gary – he wasn’t in such great shape himself, and as he couldn’t speak, I wasn’t sure how fragile his psychology was. But since Gary had asked me several times if I’d heard any news of Ward, I decided to pass the news on, telling him I wasn’t sure I should be doing so. The news of Ward deeply affected him – it still does – but he said he preferred to know.

He is going to compose something for that memorial. And he is now at the point where he feels up to getting on the internet and looking at some of his email for a short time. I’m sure he’ll be talking some math with people in the near future. We take these as further signs of his progress in healing.

Norma, to reply to your letter, I have no idea if “Hell Explained By Chemistry Student” really happened or if it is an urban legend. At the least, it gave some of us a big laugh. If the story is true, it is amazing the person could come up with it during the heat of an exam – I wish I were clever enough to come up with something like that at all!

My subconscious has it’s own definition of hell – or maybe it’s not so subconscious. I had a dream the other night, in which I couldn’t get checked out of a hotel, though I’d been trying to do so for several days. The desk clerk finally told me that no one ever left the hotel; once you came, you were executed shortly thereafter. Reminded me of the roach motel commercials. Or Hotel California. Or the fact that I’ve been living in hotels/apartments for over ten weeks now, and maybe sometimes it seems like that will never end!

All for now.

June 25, 2006

From an email sent to me:

> I'm curious, how do you
> cook these zukes?

LOL. That is usually the follow up question to "what are you going to do with all those zukes?"

I steam them, then puree them, so it's like a soup. That's about the only way to get down over two pounds of zukes a day ;-). (Fortunately, I really like them that way.)

Gary and I started our day together with stretches of Gary’s legs, then I put his net under him and got him ready for the hoyer. I mentioned to him I wasn’t sure if we were cleared to have put me in his chair with no supervision; he told me to go ahead and do it. So we may have broken the law again ;-), don’t tell. Fortunately Gary ended up in the chair and not dumped onto the floor ;-) (I have to put that little wink in there – otherwise I’m afraid his mom will read that and start to worry him ending up on the floor was at all likely.)

Lunch arrived a little while later. I think Gary will be awfully glad when he doesn’t have to put up with the cooking here. Chicken breasts are definitely not their forte, never failing to be dry and tough. He said the best thing about the one they served for his lunch was that it gave him practice balancing, because he needed two hands to saw away at it (sitting with both hands raised is a challenge; in fact, you probably recall that it is one of his therapy exercises. I didn’t push him while he tried to cut his meat, though – I’ll leave such dirty tricks to his therapists ;-)).

He had nothing scheduled for the day, and I wasn’t sure how we were going to fill the time – he was going to be up in his chair for six hours, and one thing I knew was it didn’t sound appealing to hang out in the same room he’s stuck in when he has to be in bed. Days ago we had talked about how he was going to get home when the time came, and I had said that I didn’t know how I would get him and his wheelchair in my car because the car was stuffed to the gills with things I had brought up from home or had acquired here in Atlanta or in Birmingham. With that it mind, I suggested we go out to the car and see if there was anything in it we could send back to our home with any visitors who came. So this became our project. First came the trip to the parking garage. This is where he’d gone for his push group (the group of one) and he showed me how he’d learned to open the heavy door by himself (the trick is to judge the path that the opening door will take and to be just outside that arc in order to get the chair inside it before the door starts to swing closed). He then took off down the ramp. I gave up running after him. When he stopped, I asked if I was supposed to keep up with him in case something happened. He said, no, there wasn’t anything I’d be able to do if the chair tipped over anyway. “Except to say, ‘uh-oh,’” I said. We laughed. He then went down the next ramp, and I told him that, actually, it looked like fun. He said it was, but that it wasn’t fun to go up it.

We sorted through the stuff and filled three small boxes with things that could be sent back. (I’m not sure that would give us enough room, but if not, Krystyna Kuperberg has already offered to help us get home.) One of the last boxes I grabbed to sort through was filled with all the stuff I’d salvaged from his wrecked car; for one thing, it contained all his material related to his now-cancelled Alaska cruise (“Alaska for Dummies,” among other things – do they have books for everything?). I had set the box down in front of him before realizing what it was, but thought he’d find it weird if I suddenly snatched that box back up. So I started handing him the stuff in it, as I had the stuff from the other boxes, so he could decide if there was anything in it he wanted to keep up here in Atlanta. I had wondered how he would feel about going through the box, but it didn’t noticeably affect him – I think it was much more disturbing for me, as it reminded me of the sight of his wrecked car.

We ended up with a few things to take back to his hospital room – the R.L. Moore biography, the DVD “Ghost World” (I have no idea what that is, but Gary said it looked fun), a Prairie Home Companion cassette. I started to stick the things in the backpack that is on the back of his chair. “Oh, sure,” he kidded me, “make your crippled husband carry the stuff.”

He decided not to show me how he could go up the parking ramp (Sunday is a day of rest, he declared), so we went to the parking garage elevators. That involved going up a small ramp, but it was pretty steep and his tip bars kept catching on it and it seemed harder than it should have been– probably another thing to ask his therapists what he should have done there.

Later in the afternoon he called his mom (she is having to cancel the cruise too, because of her broken arm, and Gary needed to tell her about the procedure for using the flight insurance he bought for them, so that she can get a refund of her ticket). I heard him tell her he was a little nervous about them discharging him from here in only three weeks – there was still so much to learn. But, he told her, he knew they wouldn’t discharge him if he wasn’t ready, and he’d still have two weeks of the transitional day program to attend after the hospital discharge. (We also plan to come back for another two-week session of day program later on, once he’s cleared to do the activities he is currently restricted from because of his flap. Once he’s cleared, he would be allowed to learn some of the more advanced skills. We’re hoping he’ll be cleared in time for him to come back here during the break after fall semester; otherwise we’d have to wait until next summer. Insurance probably won’t pay for the second session, and if they don’t, Shepherd told us the day program would cost $100 per day. It’ll be worth it.)

Gary also told his mom how great Joe has been to us, doing all this extra stuff we never expected – organizing yard clean-up and painting, etc. And he told his mom how all these math department people have volunteered their time and skills to help Joe – and therefore us – out. The response has truly been tremendous. We are so blessed.

(Oh, and the neighbors and Joe have been watering Gary’s pepper plants – Piotr brought up some peppers and Gary said they were great! In fact, I should mention again here that our neighbor Sylvia has been taking care of our mail and feeding our cats, and that other neighbors – the Rodgers, and I’m not sure who all else – have been taking care of mowing the lawn.)

The nursing staff occasionally checked in on us throughout the day to see how Gary was doing and if he needed anything, but they mostly left us to ourselves. We did pretty well on our own until after I had gotten him back in bed and had taken care of his skin wound, when we were trying to get him settled on his side. For some reason it took us quite some time to get him situated in a way he thought reasonably comfortable. But he told me upon my nightly return that he’d still kept slipping sideways. He thinks he figured out that it was because he didn’t use an extra pillow to help support his head in the way he normally had, but he wasn’t sure that was it. This is the kind of thing that makes me nervous, because I have visions of us going home and something similar happening, where we don’t know quite what to do to set things right. Thank God there are still these five weeks of practice.

At the end of the day, while we did his stretching, Gary remarked that today had almost been like being at home – we’d done a lot of his care ourselves, and the nurses hadn’t been around very much. True, we hadn’t had an active day, filling the time with little things (the things I already mentioned, plus talking to his roommate, being on the computers awhile – fighting over who got to use the ethernet cord to connect to the internet ;-) – etc.), but he thought it had been a very nice day.

I agreed.

I gave him a big fat hug and we said mushy stuff, and then I left.

All for now.

June 24, 2006

Mail call: thanks to Ron Becher

When I walked in this morning, Gary made a face. He said that on account of him not being in his room yesterday when “dietary” had come and taken the orders for today’s meals, they’d chosen his meals for him. He’d really disliked the breakfast he was served and feared all the meals today were going to be terrible. I reminded him that if he wanted, I would go and get him something else to eat. That cheered him up.

We started with a stretching session, me climbing up on the firmed-up bed with him. I had had the idea of looping two gait belts together (imitating Shepherd’s chain loop devices, which supposedly had been ordered for Gary before the flap surgery but have never shown up), so we tried it, and it made things easier – once I got Gary’s leg in the proper position and looped a belt over the arch of his foot, he pulled on the other belt looped through the first one, and that helped support his weight while I held his leg in position. After the stretch session, we got his net (sling) in position under him. We weren’t absolutely sure if we were allowed to do a hoist without a tech or nurse present. I’d done it often enough under supervision that Gary trusted me to do it without being watched, but it turned out that his nurse walked in just as I got the hoyer. The nurse stayed during the maneuver (he said Gary and I made a good team :-)).

Gary may not have had his binder on tight enough, though. Later, when he was doing a depression weight shift, he felt a little dizzy. He tightened his binder, and that helped a little, but at the next weight shift he again had a problem with dizziness, so I tightened the binder even further around his abdomen, as it was hard for him to get it tighter himself. Apparently that solved the problem – he didn’t have another episode of dizziness the rest of the day.

When lunch came, Gary pronounced it acceptable (grilled cheese sandwich), but when “dietary” came around a shortly after that Gary found out they planned to give him meatloaf with brown gravy for dinner. No way was he going to chance that ;-). He asked if he could change it. The woman said yes and that his other choice was a tuna melt. He decided this was a good day for his wife to bring him dinner ;-).

After lunch it was time for another weight shift. He didn’t want to do another depression lift, because those were the kind that had made him dizzy. I offered to clear the pillows and blankets off the chair in the room so he could rest his arm on that as he leaned over to the side for a side weight shift. He said he’d find another chair, and wheeled off. I was trying to upload a blog entry, so my attention wandered from him. A short time later, Piotr Minc walked in and said hi – we were expecting him for a visit. “Didn’t you just walk by Gary?” I asked Piotr, thinking that since Gary wasn’t in the room he must be in the outer room washing his hands or something. Piotr said he hadn’t, and I said I had no idea where Gary had gone off to or what he was up to (such a good short term memory I have). Piotr said that that was good, meaning that the last time he’d seen Gary, Gary had been a far cry from being able to toodle off by himself somewhere. At that time, Gary had just been moved from the B’ham NICU to its nursing unit; he hadn’t been able to talk, still on the trache tube; he hadn’t sat up yet; we were just starting to think about rehab; I had just pulled out the information my older sister had given me about the best places to go.

As Piotr said later, what a difference six weeks has made. He thought Shepherd was a great place, with its intensive approach. We agree.

Anyway, Gary came back a few minutes later; he said he’d gone all the way to the gym to find a chair for his weight shift. Don’t ask me why he didn’t simply ask me to take the pillows and things off the chair in the room – I don’t know. Must be one of those “man things,” like not asking for directions ;-) (Gary definitely doesn’t display many stereotypical male behaviors – otherwise I wouldn’t have married him – but that is one he does.)

Piotr brought up some Topology Proceedings stuff; Gary said he was now at the point where he felt he could take over his duties on that, rather than filtering it first through Jo and Piotr – but of course he is so grateful that they did that for him when he wasn’t up to it.

Piotr had done some shopping for me (I had felt a little hesitant about asking him to do such a thing, since my reluctance to do the shopping myself is only due to hating to shop and the fact that taking the time to shop means having a little less time to spend with Gary. But Piotr had said he loves to shop, a consequence of having grown up in a socialist country, so I took advantage of that ;-)). Piotr got Gary some more of the skin cream I’ve been putting on him and three more pairs of the sleep pants he’s been wearing during the day (though called sleep pants, they look like lightweight sweat pants, at least for the most part – for some reason Gary is averse to wearing the red plaid pair (hey, they’d said to get him six pairs of sweatsuit-like pants, and in his size Walmart had had only three in solid colors; believe me, there were far worse options than the plaids ;-)). Piotr also brought some stuff up from home I’d asked for (including enough Basmati rice that I won’t have to shop for any more while here, and the only swim suit of mine that Joe could find – a suit which I unfortunately immediately knew was one that I’d looked great in fourteen years ago but wouldn’t dare put on now ;-)).

There was some talk about vans and chairs, during which I remembered Phil Zenor had sent an email reminding us that he had an electric wheelchair that Gary could borrow and telling us that the community bus in our town has a service where after getting a doctor’s statement, they will come to a wheelchair-bound person’s home, use a lift to get the person into the bus, and take the person to his destination, for $3 per trip (fantastic news, Gary thought!). Then Gary took Piotr on a little tour. The rec room was full, so we were all spared from playing pool or ping pong. We went to the garden instead. Gary had felt on the cool side up in his room, so had put on a long-sleeve T-shirt. He definitely didn’t need it out in the garden. In trying to get it off he lost his balance and went sideways. Not that there was any disastrous result – he had his seat belt on – but it brought home to me that there are still “basic” skills to be mastered. He also kept popping wheelies in trying to get back up the ramp – every time before he’s done that smoothly. We thought his net had gotten caught in his wheel, so we corrected that and he tried again. It went better, but still some wheelies. We didn’t figure out why this should be so.

Somehow time had escaped us, and Gary needed to go to a therapy session. I walked back to the parking garage with Piotr to transfer the bags of rice to my car. Piotr again remarked that Gary certainly seemed to already have all the physical skills he needed to get right back into teaching this fall (Gary had agreed with him about this earlier) and noted that it would be good on the psychological level as well. Gary has had getting back to work on his mind since the beginning, so I know that is true.

I found Gary’s substitute PT stretching him in the gym, which meant I wouldn’t have to do it during the evening visit (lately that time has been eaten up by the personal care tasks that we have taken over from the nurses, so we haven’t watched a DVD since finishing Capote). After the stretching came weights. I think the PT liked Gary cuz he would tell her if he needed to use a heavier weight – she said some of her patients try to “get away” with stuff, not working up to their capacity. But Gary is highly motivated to get as much as he can from his time here, so is no slacker. They finished up with practicing transfers back and forth between the exercise mat and his chair, including a couple where he didn’t use the board at all, just popped right over from mat to chair or vice versa. The PT still supplied help, but mostly in balance, not in lifting his weight. I could tell he was really pleased at doing the transfers without the board, and I gave him the thumbs up. On our way out of the gym I asked in what situations would he do transfers without a board. He said it would depend on the distance he needed to transfer and on his strength.

We had a half hour to go before we needed to get back to his room. We went down to the rec room. The pool table was still occupied by some able-bodied players, no patient in sight. Personally I think the people should have turned the table over to Gary. But as they didn’t, we went to the ping pong table. During play, Gary lost his balance when reaching too far to the side, so decided he needed to wear his chest strap. Later he felt a twinge in the shoulder as he reached out for a wide ball. I had felt a wrench in the leg chasing the ball. We decided maybe this wasn’t such a good game for us ;-).

When it was time to get Gary back in the bed, the nurse came and watched us do it. I should have asked if there was some official clearance to doing it on our own, but I forgot. While Gary called Mellow Mushroom to order himself a pizza, I got him situated to do the care of his flap as the skin nurse had taught me. I thought it best to have Gary’s nurse watch while I did it, so we called him back. He said I did it just fine. I did notice my final taping of the edges of the gauze wasn’t as neatly done as the nurses do it, but the nurse didn’t take points off for it not being symmetrical ;-)

I picked up Gary’s pizza, and after delivering it headed back to the hotel. Unfortunately I then remembered we had forgotten to give Piotr a check to give to Joe for a down payment on the garage. I called Gary and finally got through to him – since he was back in bed a nurse had had to go in and put the phone near him. We couldn’t think of a good way to get the money to Joe quickly, though later at the hotel I thought of Paypal and called Gary again. We weren’t sure what Joe would have to do to get the money from his side, assuming he didn’t have a Paypal account, so I sent Joe a “test” dollar. The Paypal instructions then said Joe would be emailed that this money had been sent to him and tell him how to open an account so he could receive it. We had our doubts that Joe would want to open an account. Gary had already called Joe and left the message that we’d forgotten about sending that check with Piotr, so the only thing to do was to wait and see what he suggested we do (fearing it would be along the lines of “go jump in a lake” ;-)). When Joe called later in the evening, he started off with, “Oh, you mathematicians,” but said in a joking way. I was relieved, as I thought he’d be exasperated with us – here he’s been working his tail off fixing our house, and we can’t even remember to write a check.

He said to just put the check in the mail sometime tomorrow (Sunday), that if I did it at a post office it might even be picked up then. I knew there was a post office right on the corner near my hotel, so on my way home I did send off the check – and at the same time mailed Janet Rogers a check that we'd also forgotten to send off with Piotr. But the box didn’t list Sunday as a collection day. Oh well, nothing more that can be done about that.

Gary had finished “Into Thin Air” already (he said it was a really good book), and I asked him how he liked the new book he’d just started. (Judy Roitman had told us about a book that was supposed to be good, called “Still Lives,” about people with spinal cord injuries. I had read the amazon blurb to Gary, and he thought it had sounded good so we’d ordered it. Piotr brought it up with him, it having already arrived at our home (which confused me – I thought I had had it mailed to Shepherd, though I was happy to see it had come so quickly)).

Gary said he liked the book so far. He said it was mostly about quadraplegics, though, which we both feel would be quite a tougher situation, and he’d like to find a book that included more paraplegics (we’ll have to check amazon recommendations). Gary said it was amazing how much the people in the book had been able to do with their lives. “No million dollar babies there, huh?” I said. He said that at the time we’d seen the movie he’d thought it was one-sided, but reading this book made him realize just how one-sided the movie was.

I had had a much stronger negative reaction to that movie when we’d seen it – I hadn’t liked the ending at all and had left the theater mad, railing, “What kind of message does that movie give to disabled people – that just because they can’t do what they could before or because they can’t do what able-bodied people do, their lives are worthless, might as well end it?” I freely admitted the movie hit a nerve because of the way CFS disabled me. Those first years after I’d come down with it, when it was such a struggle to do any math and I’d finally given up on it, when things had gotten worse and I couldn’t do much of anything, let alone anything “productive,” (set-theoretic topologists perform a valuable service to the world, don’t they? ;-) Or at least math teachers do. . . . Hmm, many students would beg to differ) I had felt my life was a waste.

But I digress (again ;-)). After seeing that movie I had gone on and talked about what Christopher Reeve had accomplished, about how this young woman in the movie was understandably suffering from depression just after an accident that had made it impossible to do the one thing she thought she had been born to do, but that that was not the time for someone to assist her in ending her life. She hadn’t had the opportunity to explore other options – the movie had made it seem like there weren’t other options, like there was nothing more she could do with her life. (When I brought this up again now to Gary, he pointed out that that might have been true many years ago – from the book he'd learned that until the beginning of the twentieth century, quadriplegics usually only lived a few months, dying of pressure sores and infection.) If the movie was supposed to be about how it was sometimes kinder to let someone end their life, then there should have been another reason for it, say that she was suffering from intense pain that had no chance of being relieved.

And that brings up another thing Gary learned from the book, that 60-65% of those with spinal cord injury have chronic pain; for 20-25% of them it is severe. I told Gary that one of the first things I had read about spinal cord injury was the possibility of having to live with chronic pain, and that I had had to stop reading the material, at the time not in the psychological position to be able to handle reading more along those lines. I had simply hoped that that wasn’t going to be his experience. So far it hasn’t been; that “demarcation line” around his chest can cause him discomfort but has never gotten to the point of being actually painful.

Thank God for that.

June 23, 2006

Oops! I did miss naming a person to thank: Narendra Govil also came out to the house to help with the master bathroom. Janet Rogers is sending pictorial updates on the progress being made.

The OT was up first this morning. Gary’s task: to learn to position pillows the way he’ll need to after turning from a prone position (lying on his stomach) to a side position during the night. First he pretended that the exercise mat was his bed and did a transfer onto it from his wheelchair (still helped by the OT, though she mainly helped him maintain his balance, not actually having to do any lifting of him). Next he pretended he was going to go to sleep so had to get himself into a prone position from the seated position he was now in. First he had to get his legs up and get into a side lying position. No problem. Then he was to turn from that position onto his stomach. Now he had a problem. The pillows. He could’ve done this turn if they weren’t there, but they were set up as they would have to be for a proning position (to end up under his chest, above each knee, below each knee extending to above the ankle), and they seemed to get in his way – he couldn’t roll over them. After watching him attempt to heave himself over the pillows several times without success and standing there thinking that going through such a process at bedtime would certainly not be relaxing, I said, well, if this is the position he’s going to start in at night, can’t we “cheat” and have me help him get into this position without him having to do everything himself? The OT said she’d been about to suggest that. So I bent his leg up at the knee, laid that leg over the other straight one, and then gave his hip a little push on the count of three as he swung his arms and raised and followed through with his head to give himself momentum as he turned to the side. Success. Now he pretended it was five, six hours later and he wanted to turn onto his side without my help. Getting onto his side was no problem, but once again the pillows proved to be a stumbling block. He needed to get a pillow or pillows down by his ankles so that they would “float” above the mattress, and when he turned his legs had ended up positioned in such a way that the pillows already down there for the prone position were not in the proper place for side lying. He tried to fold his body over and use a grabber to move the pillows. He tried using a chain loop (a chain of loops of cloth) to hook his foot and thereby move his leg to the proper position. He just wasn’t flexible enough in the legs and hips and shoulders (and, and, and) to be able to do it anyway he tried. The OT decided we needed to work on his flexibility, so she gave us a bunch of stretching exercises to be done twice a day – I say “us,” because I am the one holding his leg in position for the stretch. When he gets his own chain loop to use, he may be able to hold at least some of the stretches on his own, but maybe not all of them, but still he can’t get his leg in the proper position on some of them – at least he hasn’t figured out a way to do so yet. So, we’ll see on that (and we’ll also see if my back can take holding his legs in position).

However, this still left us with the problem of what to do until he gets more flexible (and I have my doubts he’ll ever get much more flexible). We were surprised to find the OT didn’t have any more suggestions for what Gary could do (we thought surely Gary hadn’t been the first to ever have this problem). I had a thought, and told the OT that this was just off the top of my head, but what about little “ankle band pillows” – little pillows or pieces of foam that would wrap just above his ankles, but wouldn’t be tight enough to cause any pressure, and would keep his feet from touching the mattress. Both she and Gary liked the idea, but she said she’d have to check with the skin nurse to see if there was any problem with that.

Gary returned to his room, thirsty and hungry after all this activity. I went to the patient kitchen to get some cups in which to mix his protein drink and on my way back happened to see the skin nurse. I asked her about my idea of ankle band pillows. She said there were such things but they had a tendency to slide out of position. She also said there were such things as waffle boots (I found a pic at http://www.ehob.com/products/foot.html) , but that they were for “old men” and Gary should work on his flexibility and not rely on these other products. I returned to Gary’s room and told him this, but he objectd to her reasoning. He wasn’t convinced that ankle pillows would slip, and if waffle boots would work and there was no medical contraindication to using them, he saw no reason not to use them just because she thought they were a last resort. I said maybe she was afraid if she approved of them then he wouldn’t work on his flexibility and he needs to do that to help in other matters, such as dressing. He said he’d still work on that, but if there was a simple solution to the turning in bed problem it seemed better to take it than to spend a lot of time trying doing it a harder way. “Whatever works,” he said. “Would you rather I wake you up every night to put pillows under me?” he continued.

I saw his point.

The skin nurse came in later to schedule showing me what she wanted me to do for Gary’s flap care over the weekend. She again mentioned that in order to solve the pillow placement problem Gary should work on his flexibility or work at getting his proning up to eight hours so he didn’t have to turn at all. Gary didn’t say anything, but I know she didn’t convince him. ;-)

For an hour in the early afternoon Gary met with another substitute PT, his own PT having taken a long weekend. He was supposed to try out the power-assisted wheels again, but one wheel refused to turn on. So instead, Gary started to learn how to do wheelies. This isn’t for fun (well, I’m sure it can be) but to get over obstructions on the ground – like garden hoses, small tree limbs – or for getting up small stepups to doorways, or for getting out of crevices if the front wheels get stuck in such.

First the PT took his tip bars off of his chair, then she stood behind him with a gait belt attached around his rear axle and tipped him backwards to the balance point (further back than he’d thought it would be and far enough back that I winced and had to restrain the urge to run over and put him upright ;-)). To keep the chair in that wheelie position (front wheels in the air) one must use one’s hands to constantly move the rear wheels a short distance back and forth. He practiced this a number of times. Then she had him practice popping himself up into the wheelie (give a strong pull on the wheels) and trying to balance there. He definitely improved – she said he was a quick learner and another therapist walking by said, yeah, he picks up everything very quickly, which made me puff up with pride (though it has nothing to do with me ;-)) – but neither he nor I could tell how much help she was giving him. Let’s just say he won’t be practicing tip-bar-free wheelies without a therapist behind him, at least for a while ;-)

Finally she showed him how to take his tip bars off and on or how to simply swing them away (he will need to this if there are obstructions he needs to get over but the tip bars don’t allow him enough clearance). Then it was time to go back to the room and soon after that, time to get back into bed. He was ready for it.

The tech hoisted him into bed (I was being lazy ;-)), and then I got him ready so the skin nurse could check his flap. He started laughing and said maybe he should take his gloves (to protect his hands while he does all that turning of the wheels of his chair) and his elbow pads off. He did look a rather funny sight leaving them on in his current state of undress ;-).

Between the two of us we got him on his side and properly pillowed – he can do enough turning and maneuvering around in the bed now that I don’t have to exert a lot of strength to help. The skin nurse came and checked him out. What she is “working on” is the third side of his flap, which didn’t close in a nice seam like the other two sides but rather stayed slightly open and scabbed over. The scabs have dropped off, so that third side looks like a “channel,” with definite “walls” on each side. She wants to get rid of the walls so the skin heals over smoothly. To do that she uses silver nitrate (brushed on with a little stick) to burn the top inner edge of the wall. The result is supposed to be that the skin breaks down and then heals back up smoothly. Then she uses the cadillac version of neosporin, xenaderm, on the skin around the wound. Finally she uses something called acuzyme (I read an ingredient of papain, so think meat tenderizer ;-)), which she sprays on a topical wound dressing and then sticks it on a couple parts of the wound that still need debriding. Finally she tapes on gauze over the wound.

She doesn’t work on the weekends, and she thought that rather than having to round up and explain the process to each different day nurse Gary would have over the weekend, I could do it once a day (under nurse’s supervision) if I’d agree to that, which I did. (She’d let me finish each part of the task after she had shown me what to do, so I was sure I could do it. And I had her write out the steps so I’d be sure to do the things in the proper order.)

A little later Joe called with an update on the house, but I had to dash off to the chiropractor so I gave the phone to Gary. I’m sure I don’t remember everything Gary told me later about the conversation, but I do know progress was being held up because the dumpster wasn’t delivered, that the plumber will be coming out to move the drain in the shower from the front to the middle, that new window coverings have been ordered for all downstairs rooms except the kitchen, and and that we put in an order to have a detached garage built for us. I probably won’t recognize the house when we return. Or maybe I won’t notice the difference ;-)

During the evening visit I stretched Gary. It wasn’t easy in the bed – I sunk into that air mattress – and I worried about my back. Then Gary remembered the bed could be made firmer, so we pumped it up to maximum level. Then it was more comfortable for me, but not for him. He only had to stand it for about ten minutes, though. If he can’t do all these stretches himself at home, we are going to have to do them on a firm surface, like maybe that futon couch.

So, all in all, we are gradually taking over more and more of the nurses’ and therapists’ tasks, becoming slightly less dependent of them. But it’s good to know they are there!

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.