July 20, 2006

Mail call: thanks to Jim and Diane Barjenbruch and family.

Today started out with a Jeopardy-like quiz, led by Nurse Mark, who made the session a lot of fun. The six patients got to pick questions for points (100 to 500) from the categories “Respiratory,” “Bowel,” “Bladder,” “Skin,” and “Miscellaneous.” I soon decided that you might as well always pick from 500, because Mark never allowed a patient to miss a question. He would engage in pantomime, ask leading questions, and so forth. Only a couple of times was a wrong answer still given, at which time Mark would suggest that they were only kidding and that they’d really meant to say . . . . One time he seemed to have exhausted all his hints, so I joined in and added my own pantomiming of the correct answer. The patient then got it and said he wanted me to be on his team. (I said I would be on everyone’s team but would get into the action only if Mark’s antics failed to elicit the correct answer).

The “Jeopardy quiz” a good review of things that had been presented in the classes. I picked up a couple of things I had missed before – but only a couple ;-). I couldn’t figure out why Gary didn’t always pick the 500 point questions (and for that matter, why only the young boy in the group – probably about fourteen or fifteen years old – did so), but he later told me he’d wanted to let the kid win and said with a wink that he’d been showing his maturity. I told him the hell with maturity, I would’ve wanted to beat the little –

ahem.

After that class, Gary’s next task was to prepare a meal with the OT. He chose his speciality: spaghetti :-) He also decided on steamed broccoli, and the OT suggested garlic bread. The first half hour the therapy tech was with us, and like us she didn’t know where anything in the kitchen was, so all Gary accomplished was to find a large pot for the pasta and a steamer for the broccoli, to get a start on setting the table for him and the OT, and to get out the salt from a cupboard and the pasta from another cupboard, using his grabber. When the OT came, he began the process of cooking. To get the rather large pot of water for the spaghetti from the sink to the stove, he used a rolling cart. At home, he will be able to slide such a pot from the sink along a counter to the stove, but we are thinking such a cart will come in useful to get things from the stove to the kitchen table. The OT cautioned him not to try to carry something like a large pot of hot water on a board on his lap – he of course has the sense to know he wouldn’t put the hot pot directly on his lap, even if he can’t feel it!

A nice feature of this kitchen was the cooktop – Gary could roll right under it with his wheelchair, and all controls were in the front. Gary really liked it and said maybe we’d get one. (Over the years, our usual division of labor has been that I get to do the cooking and dirty everything up and he has to clean up, but he did some of his own cooking several times a week, and even more often when I started to have back problems.) I’m not sure we could afford a cooktop like the one they have here, which lowers and raises at the touch of a button!

A few other nice “accessible” features of the kitchen were a lazy susan, a deep drawer that pulled out containing the garbage bag, and a shelf that lowered itself from an upper cabinet down to the counter at the touch of a button (it held spices).

The OT also showed Gary a tool that can be used to hook onto an oven rack for pulling it out or can be pushed against the rack to get it back in. This he used to remove the garlic bread (in the interest of time, the OT “made” the bread, i.e., buttered it and put garlic salt on it, wrapped it in foil, and put it in the oven). Again, the hot bread was put on the rolling cart to transport it to the table.

The OT and he enjoyed their lunch, Gary noting wryly that it had only taken him an hour and a half to make five-minute spaghetti. The OT pointed out that meal preparation could be speeded up with greater planning – setting the table after things got cooking and not beforehand, etc. The OT had to take off for a meeting, and Gary savored his meal. I got my rice (which I’d cooked overnight in a slow cooker in the hotel room) and joined him. At 12:20 he remarked that he had to do his IC before his 1pm session with the therapy tech, so guess who got to do most of the cleanup. He is definitely going to have to learn to organize better ;-).

On my way back to his room, I ran into Gary’s roommate and wife. The roommate was completing his discharge, and we said our goodbyes. He was eager to go home, his wife was nervous about it. Sound familiar? ;-) I gave him a kiss and his wife a hug, and we wished each other luck. He told me to “Take good care of that bo’,” meaning Gary. Gary asked me when I’d gotten back to his room if his roommate had said to take good care of him, and I said yes. He told me his roommate had told him to tell me to take good care of him, and he had replied that he knew I would. :-)

With the therapy tech, Gary’s first task was to get on the “regular” (i.e., non-hospital) bed they have in the gym and practice rolling from his back to his side and then sitting up. The softer surface made the rolling very difficult, and the tech finally gave him a discreet push on the legs (which of course he couldn’t feel), not willing to let him roll back after he’d come so close to making it a few times. He got himself sat up without help, though, and on a later attempt, he also did the rolling over all by himself.

After that, I assisted him in transferring back to his chair, then to the exercise mat. On the mat his task was to sit on the edge with his legs hanging over and do some weights – biceps curls and tricep extensions (start with arm bent in front, parallel to the floor, then extend the upper arm out to the side using the elbow as a hinge). Because the limiting factor for him was balance and not strength, he chose very light dumbbells. As all balance exercises do for him, these exercises required lots of concentration, particularly because the tech wanted him to sit up as straight as possible (for the weight-training aspect of the exercises to be effective) and not lean way over to counterbalance the weight. He started off very shaky but got smoother as the sets progressed. He was tired after that, more mentally pooped than physically, he said, and I went off to get him some of his “muscle juice,” the Juven protein drink (they have cut him back from two packets to one packet per day, as the drink is more for wound healing than muscle building, so he’s thinking of getting some kind of protein drink at a health food store to help him build muscle).

While assisting him back into his chair after his exercises, I noticed he had another abdominal muscle spasm (they’re hard to miss, as they throw him backward in the chair). He told me he’d told his doctor that those had started up recently. The doctor had said the muscle spasms were a good thing, that they could help prevent the pot belly that those without the use of their abdominal muscles get, and that they could be a sign of “something returning,” meaning some muscles possibly functioning again.

Next up was a session with a PT, but not his usual one. The task: wheelies and curbs. Yikes. She knew we were nervous about it (me even more than him, I suspect), so after she took off his tip bars, she not only used a gait belt around his axle while standing behind his chair, but kept one hand on his chair. She assured him not to worry, that there was no way he was going down – and that if he did, it would be on top of her. So he practiced balancing in the wheelie position, and then she had him travel for a short distance in that position; she told us that skill would be useful if he came to a patch of gravel or mud that his small front wheels could get stuck in (or he could go around it, I suggested ;-)). Next we were to go over to the section of the gym where the wooden platforms are set up to practice curbs. As she left to set them up, she handed me the belt still attached to his chair, and told him to put his breaks on and not to move (since his tip bars weren’t on his chair). I stood right behind him, hands on his chair, the belt in one of my hands. She joked to Gary when she returned that I was probably going to keep one of those leashes on him when he was at home. Hey, there’s an idea. We’ve already joked that he won’t be able to get out of bed in the morning until I put down the rails of his hospital bed. Shades of “Misery.”

He seemed less successful at the curb practice this time – he got his front wheels up it all right, but then couldn’t get the back wheels up. She said it was all a matter of timing – two pushes, a stronger push to get the front wheels up in a wheelie, then without a break in momentum, a lean forward and continued pushing to get the front wheels down and the back ones up over the curb (obviously if you pop too high a wheelie or don’t get the front wheels down, you are going to tip over backwards; Gary told her that the first few times he practiced curbs on his own (after being cleared to do so), he was going to wear a helmet).

After this, she had various other things on her list for Gary to do, but I mentioned that he hadn’t gotten to try the tilt table yet, because the substitute OT we’d had the day he was supposed to do it hadn’t been trained in using the table. (The exercise rec therapist had wanted him to do the tilt table so she could get him cleared to try the Easystand in the gym – that is the machine I told you about that would stand him upright and possibly even enable him to do cross-country type of motions, depending how his body reacted.) The PT agreed to do the tilt table with him. So we hoyered him onto the table – the table was too high for him to attempt a depression transfer onto it – and the PT strapped him onto the table at the chest, hips, and knees. The PT hit a switch, and the table starting tilting upward from its horizontal position. She stopped it after it was at a slight angle and then told me I could continue raising it toward vertical, stopping it along the way to make sure that Gary had no symptoms of light-headedness (it’s not unusual for patients to faint from the unaccustomed rush of blood to the feet; as a point of possible interest to him, I told Gary that many people with CFS “fail” the tilt table test, displaying symptoms of Neurally Mediated Hypotension, and that maybe I should get on the table with him to see if this was the reason I’ve been having these episodes of light-headedness ever since a few weeks after his accident – my guess is that they’re brought on by standing too long in one place).

I gradually brought Gary toward vertical, holding at intermediary positions for a minute before moving on. I kept asking how he felt, and he kept saying that while it felt different, he had no light-headedness. At last Gary said, “Hey, I’m up! I can see my feet!” The PT called over from the patient she was helping next to us, “And now you can hug your wife from an upright position.” So we did that, and it was nice :-) I took him a little bit more vertical – the table goes only to eighty-five degrees. He noticed for the first time that the sign on the door across from him read “Quiet Treatment,” and said he’d like that treatment some time – assuming that it meant they’d put him in that room and leave him alone, no pushups, no terrible threes. He was kidding, of course. Well, sort of ;-)

After a couple minutes in that position, he said he wasn’t feeling quite as comfortable, so I backed him down a little. The PT said to hold him there for five minutes and then to slowly back him down to horizontal. But after about three minutes, he wanted to go as upright as the table would allow, so we did that, and he had no problem with it. After a couple of minutes, the PT told us to head toward horizontal – another patient was waiting to use the table. When I’d gotten him to horizontal, he said it made him almost feel like he was upside down. The PT came over to hoyer him back into his chair, and he told her the tilt table had been fun. She told him he’d done great, that most people don’t go up that far that fast. But she told him not to be disappointed if he didn’t get all the way up on the Easystand if he got to try it – it brings a person to vertical all at once, and the support is different.

After that session, he and I went back to his room to get him back in bed for awhile. Unfortunately, he hardly went anywhere on his transfer from his wheelchair to the bed. I was sitting behind him, on the bed, assisting him at the hips, and when I saw him land on the very edge of the bed, fearing he would slip over it, I pulled him back away from it. He lost his balance backwards and I moved my body so his back was against my chest and we both went down onto the bed together (I didn’t want him to bump his head on the back rail of the bed – quite enough head-bumping lately, thank you very much. Note to self: keep that back rail lowered during transferring).

“Nice to know nothing bad will happen if I don’t make a very good transfer,” Gary said. “Easy for you to say,” I mumbled from underneath him. “Are you all right?” he asked. “I think so.” “Can you get out?” “Not quickly.”

I then eased out from under him, telling him I was glad the therapists hadn’t seen this transfer. He asked me if he’d really landed on the edge and had been in danger of sliding off the bed. I told him that it had looked that way to me, though I couldn’t say for sure – but that I really really hadn’t wanted wait around and see if that would happen. “Good thinking,” he said. Our next task was to get the rest of his body onto the bed, as he was lying diagonally across it with his butt still hanging over the edge and his legs angling down toward the floor (I still had my grip on him, because I feared that if I let go, he would slip down the side of the bed). I kind of slid down onto my knees on the floor while holding onto his hips, and then I hoisted his legs up on the bed so that he was now on his back with one hip pointing toward the ceiling. This now became a problem-solving session: how to get him repositioned in the bed without doing either of ourselves bodily damage. I put up the remainder of the bed rails, and with a lot of pushing and pulling on both our parts, we got him into an acceptable position. Just then, our case manager breezed through the curtain of Gary’s room to inform us that she had been able to get us the Transitional Living Apartment (TLA) in Shepherd’s other building, the Marcus Building, to stay in for our in-center pass. She raved about it – we’d be off to ourselves, just like in a “real apartment,” and we wouldn’t feel like we were in the hospital at all; there was a queen-sized bed, a large accessible bathroom, a kitchen, a TV, and so forth. Gary and I responded enthusiastically, though actually my thoughts were a little occupied with something else at the time; I don’t think she noticed anything amiss, though. After she left, I told Gary that it was a good thing she hadn’t come through that curtain five minutes beforehand – she would have decided that we weren’t ready to be on our own!

We then tried to figure out what had gone wrong with that transfer. Gary decided that his timing had been off and he hadn’t twisted enough at his shoulders and therefore hadn’t twisted enough at the hips.

I, on the other hand, had twisted too much at the hips in trying to make sure he didn’t end up on the floor, and the additional pulling and pushing to get him onto the bed hadn’t improved matters. After I got him padded off on the bed, I hobbled off to the chiropractor, who spent more time than usual trying to crunch me back into recognizably human form. (Okay, I exaggerate here. A little.)

I went back to the hotel to start dinner and tried not to get too nervous about the upcoming call – from the reporter who’d talked to Gary yesterday. Since I couldn’t jot down notes when talking to her ;-) I don’t know how accurately I recall our conversation, but here are some things we covered (I think ;-)). She started off by asking Gary’s age and how long we’d been married (so now “everyone” will know we soon celebrate our 25th!). She asked me what my reaction had been to getting the news of his accident (so I told the story of going to Paneera’s for my writers group meeting, getting the message to call the emergency room, and getting the news that Gary had been in a car accident and had a severe spinal cord injury and was paralyzed from nipple level down – at which point I found myself on the floor). She asked me things like what affect this situation had on my life, if any, and if I was bitter about having to take care of him (I thought that a little odd – if someone did feel bitter, would they admit it to a reporter?) or if I’d thought it my duty as his wife to take care of him. I told her “neither,” that I’ve always thought Gary was the most wonderful person in the world, so what I did, I did because I love him. I said I hoped I never would feel bitter about it, but that I certainly didn’t now. I told her that Gary would be independent in time and I would have to do less and less for him. Since Gary had said he wished he’d told her more about his rehab here, I picked a day (last Thursday) and told her about what he’d done that day. I also told her a little about the classes offered here, how they covered the various areas like respiratory, bowel, bladder, skin. I mentioned that pressure sores were a major concern because those with spinal cord injuries can’t feel that they’ve had pressure on an area of the body for too long; so to prevent the sores they need to shift off the areas of pressure on a regular basis. I can’t remember all I said about the various classes, but I’m sure I told her much more than she wanted to know ;-). But then, I’ve probably done the same with you ;-). (Actually, she thanked me for the information and said she realized such a disability involves a whole lifestyle change and that that was something you usually don’t realize unless it happens to you or to someone you know.)

Anyway, I don’t know how coherent I was or if I said what I’d meant to say. If anything in the article conflicts with what I’ve said in the blog, go by the blog!

Speaking of the blog, since Gary said that he regretted not telling her more about it, I went ahead and gave her the URL in case she wanted to look it over for more information. I told she could probably find the answer to any question she might later to think to ask us, as in the blog I covered everything from what Gary was doing in his therapy sessions to what we’d learned in the classes to what my thoughts had been on different days.

After that call ended, I checked a message on my cell phone from a person from Shepherd’s publicity department. She said that a someone from the university’s newspaper wanted to interview Gary, and she gave me the number to call to arrange for the interview. I don’t know how the university paper heard of him.

As always, I returned to Shepherd in the evening. Gary’s sister Norma called while Gary and I were doing his stretching routine. She told him a little about the Alaska trip and promised to tell more to him later. I know Gary was really pleased that the “flightseeing” tour he’d been pushing for everyone to go on had turned out to be a major highlight of the trip (they saw Mt. McKinley and its glaciers up close – even landing on a glacier).

To finish, a few notes from Jo Heath. First, Krystyna Kuperberg did a lot of the painting in the study. Second, “the big move” is Saturday the 22nd. Jo says that this is the day “when all of your
furniture will be put back into the wrong room or at least in the wrong place.” LOL!