September 30, 2006

Speaking of annoying new habits (see yesterday’s entry) but from a different quarter, Blackjack has taken to hooking his paw under the “cat barrier” (door) and practically shaking the thing off its hinges if I don’t get there early enough (in his mind) in the morning to feed him. The first time that happened, I ran out there with my heart in my mouth, not knowing what was making all that racket – I thought someone was trying to break in. I told Gary that if this starts happening while I’m fast asleep, I’m going to have to tie all Blackjack's paws together, like a roped calf, before I toss him on the other side of the cat barrier for the night. Gary said I should be sure to stuff a gag down Blackjack’s throat as well. Good point.

This afternoon we did a little transfer practicing. Gary went back and forth three times between wheelchair and bed, me with my hands on his hips, giving as little help as possible. Turned out I didn’t help him at all. He tried changing his technique a little, and his latest hypothesis is that it is better for him to aim his nose toward the inside of his knee when he is swinging his upper body for momentum, and then to do the twisting motion (provided by the way he is pushing with his arms, no ab twisting possible) after he’s got his butt in the air. Before, he was aiming his nose toward the outside of his knee (which is what they told him to do at Shepherd), but he thinks this other way gets his butt up higher.

We also went a bit further down the driveway, and this time I didn’t need to provide any braking power at all. Gary says even when it becomes “safe” for him to go up and down the driveway himself, he doesn’t think he’ll be getting the mail on a regular basis – too hard of a process.

Gary came up with a new balance exercise: petting a kitty while sitting on the bed. Tigger likes that one.

September 28, 2006

Today’s adventure was trying to go a little bit farther down the driveway. Gary’s goal is to be able to get to the mailbox, and, a harder task ;-), back up the drive with the mail. He has a ways to go – he lost control of his chair on the way down – but, of course, I had had my hands lightly on the handles, so I simply grabbed them harder to stop his chair.

September 29, 2006

Today was Gary’s 6 week follow-up appointment with his rehab doctor at Shepherd (whose pic you saw on the blog). We had to get our routine started an hour earlier than usual, and it was going to be a long day, with me driving us there and back, so naturally I slept lousy, getting about four hours of sleep. I made it a thousand times worse by doing something stupid. Last nightI started to feel tense about the prospect of the trip , so I “lost it” and ate a big bowl of Gary’s cereal, and, adding insult to injury, had it with milk. I woke up at 3 a.m. with a monstrous headache, feeling sick to my guts. I kept the headache and the sick feeling the entire day, and it will probably take several days to get back to “normal.”

On the way to Shepherd, Gary commented that he’d been there so long, this felt like going home. I teased him about wanting to check back in, and he said it would have its definite advantages – the nurses could take care of his bowel program and do his ICs for him, while he could just lounge. I told him that with his luck, he’d probably have to share the room with three other patients with speaker-phones turned up loud. That and the fact that he wouldn’t get much sleep during the night seemed enough to dissuade him from taking up occupancy there again. ;-)

On our way into the building, Gary told me that at least I wouldn’t have to be embarrassed about someone seeing me not helping him with the doors. “No one helps you here,” he noted. I’m not sure he was being entirely complimentary. ;-)

We had gotten there a little early, and he went off to do an IC (which was a whole lot easier than doing it in the car while I was driving, which is what he would have done had we gotten there later). Meanwhile, I went out to the garden. Yup! My graffiti sign is still there! I then went to the library and took out my laptop to while away a few minutes. I discovered that since Gary had been in residence, they’d put in wireless. (Not sure if it’s in all the patients’ rooms – it wasn’t available in the exam room we went to after this.) So, I looked at my email then worked on my story until Gary came to collect me.

The exam room surprised me – the exam table was very narrow, and it didn’t lower to the height of a wheelchair. No coddling of quads and paras here! Gary and I did the transfer, me giving the maximum help of “under the sitting bones” and having to help him regain his balance and get him farther back on the table. I’d been telling him he needs to practice his transfers more (with me), because he hasn’t made a whole lot of progress in becoming independent with them. It seemed evident to me that this “uneven height” transfer showed the lack of practice.

Once he got on the table, I weighed his chair – the nurse had weighed his chair with him in it a few moments earlier. He is about the same in weight, maybe slightly lighter. He took this as evidence that I should take him out to the local ice cream parlor more often.

The doctor first checked out his flap. He said it was looking good. I said, “So, then it’s okay that every night when I check it after he transfers into bed it looks purple and swollen?” Okay, maybe that sounds like a dumb question to you, but I couldn’t understand why the doctor thought it was healing fine when to me it doesn’t look like it’s improved in weeks. Anyway, Gary said it was a good thing I’d said that, because the doctor replied, “No, that’s not okay,” and thought maybe it still had something to do with Gary’s chair, since Gary has been diligent about doing his weight shifts, and said he’d go look at the chair while Gary was getting dressed.

He then asked if Gary had any other concerns. Gary said that he was concerned about the bowel program pattern his body has gotten into – nothing for two days (while still having to spend the 20-25 minutes doing digital stimulation) then having to spend 1 1/4 to 1 3/4 hours for “everything to come out” on the third day. The doctor suggested he try doing the digital stimulation every other day, since the transit time was so long, and using a stool softener. On the days Gary isn’t scheduled to do the digital stimulation, he would still do a rectal check (stick the finger in and feel around), and if “all’s clear,” he can skip doing the digital stimulation; otherwise he’d have to do it, of course, to avoid having “an involuntary” later on in the day. So, Gary is going to try that. If that doesn’t give good results, the doctor said it might indicate Gary’s colon is weak, the muscles not propelling hard enough, and that the next step is to try senna. I dunno, he’s the doctor, but Gary and I thought trying a regular addition of prune juice or magnesium oxide or citrate tablet (not every day) might be better than the harsher, habit-forming senna (the doctor did say if Gary went the senna route, he’d have to be weaned off of it as the body becomes dependent on it). In this second case, Gary would have to go back to doing the bowel program every day because if it’s the case that the colon is weak and not simply that the transit time is slow and things are “too high up,” then “things could get backed up.”

The doctor corrected Gary when Gary called the digital stimulation program “the dil program,” which is what all the Shepherd nurses call it (even though we were warned that no one outside of Shepherd calls it this). He told Gary that “we scientific types have to stick together,” that “‘dil’ is short for ‘dilatation’ and is therefore not correct because we are not dilating the rectum. This has nothing to do with pickles.” Gary and I later came up with the possibility of shortening “digital stimulation” to “dig” – yes, pronounced “dig,” not “dij.” Seems apt ;-).

Gary’s final question concerned the t.e.d. hose. He asked if it’d be all right to change to the knee-highs instead of the thigh-highs – so I don’t have to struggle so hard every morning to put them on him! Since Gary’s swelling is in his feet and ankles, the doctor said this would be all right.

The doctor told Gary to get dressed, and he and I went out to look at Gary’s chair. The doctor immediately noticed that the foam at the bottom of the chair’s back, where Gary’s “bony butt” (that’s doctor talk ;-)) presses, is not as thick as at the top. He told me we should go to someplace like Home Depot and buy some foam to put into the bottom of the back pad of the chair (it zips open).

We went back into the exam room, and the doctor chided Gary for still being laid out on his side with his pants down, saying, “What, you still have your wife put your pants on for you?” I thought this was vastly unfair and said Gary could put them on himself, that, in fact, his being able to do so was a recent accomplishment but that he couldn’t do it on such a narrow exam table because he needed to roll from side to side. I am usually (unfortunately) diffident around doctors (otherwise I would have told this one that I had a name, it was “Peg,” and to quit referring to me as if I wasn’t standing right there, always saying, “your wife,” to Gary whenever I was being referred to), but this I couldn’t let him get away with.

So, that was pretty much it. The doctor handed me some forms to take up front, and left. I then got Gary’s pants on him – it was hard for ME to do it with that narrow table – and then we got him transferred into his chair. Gary made a follow-up appointment for six months from now, and then we went to the apothecary to get the new t.e.d. hose, a couple “reachers,” and a new long-handled bath sponge, his original one having never rematerialized after our return home.

We next made a stop at Fresh Market, where I picked up Gary an Italian panini sandwich for lunch. Then we headed home. I was just thinking I was handling this journey back home much better than the last time (the last time, the traffic had me on the edge of my seat), when Gary called out, “You’re supposed to take that exit!” Fortunately there was a break in traffic and I zoomed across four lanes, just making the exit. Turned out I had missed where 75-85 split into the separate expressways and had stayed on 75 instead of getting onto 85, so I then had to take 285 for a while. Other than that, the journey home was uneventful. I did decide Gary deserved an ice cream, so we stopped for that when we were close to home.

At dinnertime, Gary brought up that he hadn’t asked about something I had thought he should – namely why he now always coughs while he’s eating – things get stuck in his throat. I said, “Yeah, I almost asked him myself, ‘How long am I going to have to put up with this annoying new habit he has?’” Gary told me to remember that I was a saint, and saints don’t whine. I told him I was turning in my halo ;-).

But Gary thinks the coughing is due to something that they did in Birmingham – he thinks some little “pouch” was (accidently) created when they put in the trache. He’s never done this coughing thing before.

Gary then asked me how I was doing, and I gave a little shrug. “Okay, considering,” he interpreted, then continued, “Well, that’s better than this morning when I radioed you on the walkie-talkie and you answered by saying, ‘Somebody just shoot me.’”

I’d forgotten about that. ;-)

September 27, 2006 (10:20pm)

Stupid cat! Tigger brought in a ground squirrel. I much preferred it when Gary could go chasing after the things – my tactic was to go into the bedroom and cower behind the closed door until we were once again varmint-free. Since that wasn’t going to happen anytime soon, I got a towel at Gary’s direction and scurried around the room chasing after the thing. I think Tigger had broken its leg – otherwise I’m sure I wouldn’t have gotten it before Christmas. I threw the towel over it, but then had a hard – very hard – time making myself pick the critter up in the towel (which is what Gary kept telling me to do). I finally picked up the towel, but it didn’t have the beastie in it – it ran between my legs and I hopped up and down and let out a little (but just a little) shriek. I cornered it again, threw the towel over it, and this time managed to make myself grab the towel right away. I had the beastie between my hands, and I went hurrying out the door all the while letting out an “ohhhhhhh.” I put it down in the woods behind our house and tried to catch Tigger as he came down the path after me. I didn’t get him, but he soon came back into the house sans animal. I told Gary I didn’t know if I’d done that chipmunk any favor, as I feared it now would die a slow death from being crippled, but Gary said I’d done us a favor by getting it out of the house. He said he was proud of me (gee, thanks, I said), and that he could tell I didn’t like picking the thing up even though it was wrapped in a towel – at which point he imitated me trying to keep at arm’s length while grabbing the chipmunk. I was tempted to swat him, but I refrained ;-). Later on in the day I coincidently came across an online article about aggressive squirrels in a park in California that in the last three months have bitten three people. Gary did not take this as evidence that I shouldn’t try to rid the house of chipmunks.

September 26, 2006

Today the substitute therapist asked Gary how he was coming along in accomplishing his goals. One thing on the list was the preparation of simple and complex meals. She asked him what he was able to do, and he described the meals he’s made. She said, “Oh, you can do simple ones, then.”

What does she want, Le Cordon Bleu? :-)

September 26, 2006

Today the substitute therapist asked Gary how he was coming along in accomplishing his goals. One thing on the list was the preparation of simple and complex meals. She asked him what he was able to do, and he described the meals he’s made. She said, “Oh, you can do simple ones, then.”

What does she want, Le Cordon Bleu? :-)

September 25, 2006

Today’s big adventure was a trip partway down our steep driveway, farther than before. I held lightly onto the handles of Gary’s wheelchair, prepared to grip them if needed. It wasn’t, for the distance he went. He said it was hard, though – he needed to lean way back in the chair to keep his balance, and he had to grip the wheels constantly so as not to go too fast. (Supposedly when he gets good at wheelies, it would be best for him to go down that steep incline in a wheelie – he’s pretty far away from being ready to try that!) Going up the drive was also a challenge – the hardest part, he said, was at the beginning, getting started from a dead stop. We went up and down twice.

Some guard cats we have. I heard a strange noise this evening while doing the routine with Gary. I went out to the family room, and there in the hallway was a strange cat eating out of our cats’ food bowls (the noise I’d heard was the bell around its neck tinkling). Our cats just sat on the futon watching it. It ran off at my approach, however.

September 24, 2006

Cleaning person came today. Seemed to do a good job. Keep your fingers crossed.

Gary timed how long it took him to get his pants on (by himself). Seven minutes forty seconds. :-)

There is an article about Christopher and Dana Reeve in the new Readers Digest. Good article, made us cry. Also again made us thankful Gary’s injuries weren’t worse. And it had us wondering how Chris could have gotten a pressure sore with all the care he must have had – an infection from one was what killed him.

September 23, 2006

Well, Gary tried using the long transfer board in and out of the shower and then to the bed afterwards (so I could dress his flap and get his hose on him, etc.). Guess what? He said, “That was easier.” By being able to keep his hands on the longer board and push, the board didn’t stick to his “damp ass,” as he put it. The man should have listened to me weeks ago ;-). But this is not to say the transfers were easy. There is still no way I would not be standing right in front of him during these transfers – I had to hang onto his hips at one point because he still nearly slid out of his chair on the way back to it from the shower bench, due to the angle of transfer being different than the bed transfers.


When we got him transferred back into the bed afterwards, he said he was so tired out from taking the shower that he would like me to put his pants on for him. As I did so, he noted that one of the Shepherd therapists had said he could practice getting his pants on while sitting in chair while watching TV. He gave me a look. “So far, we haven’t had any time to watch TV.” He then commented, “I suppose we’ll get there. Eventually.”

He then told me he likes his “new” office – Phil Zenor’s old office on the second floor (the elevator not a necessity to get to it, in case it ever is “out”). He said Wlodek Kuperberg watched him closing his office door and had a suggestion (Gary has been closing his door in increments, reaching for and pulling on the door, backing his chair up a little, reaching and pulling on the door, etc.). Wlodek suggested Gary tie a rope around the handle and pull on that – one of those, “Now why didn’t we think of that?” suggestions :-). Gary thought that idea might come in handy other ways. He said, for example, he could learn how to lasso and when he wanted me he could lasso me. I told him he was going to have to get damn good at lassoing. ;-).

Janet and Jack Rogers came to load up and take to the Thrift store the stuff no graduates came to get -- the foam pads,a mattress set, an old couch. Thanks so much! T.Y. Tam came and put on a stove hood that Gary had meant to do around the time of the accident. Looks good! And matches the stove, unlike the old one ;-).

I managed (barely) to accomplish my goal to finish revising a chapter of my story by the end of this week. 50 pages down, 750 to go :-p (that is the symbol for having your tongue hang out, in case you don't know).

September 22, 2006

Gary said he got a good test of his new rain poncho today. It started pouring while he was outside at the university waiting for the bus to take him home (he said he realized later he should have called the bus people and found out exactly when they’d be there to get him). The poncho worked well except his shoes and t.e.d. hose got wet. (Note to ourselves: Gary needs a spare pair of shoes!) So I got him changed out of those, put his tennies in the dryer, and found an old pair of slippers that fit him loosely. I told him to watch his feet while he had them on, as part of the function of his shoes these days is to protect his feet should he bang them into something while wheeling around in his chair.

Oh, someone asked about the ground squirrel. Apparently it slipped out a window one of those nights we had one open. At least I assume so – haven’t noticed a smelly carcass around anywhere ;-) (of course, knowing me, it’s possible I’ve overlooked it).

September 21, 2006

“So, how’d I do?” Gary asked from his bed when I came back into the master bedroom this morning to check on his progress in getting his pants on. I helped him roll to one side then the other, making sure the back pockets weren’t bunched up (we’ve decided he should just cut them off – they are of no use to him, only can cause problems if they’re bunched up and therefore press against him causing pressure sores, and he isn’t flexible enough to reach back into them to straighten them out).

“Well, I believe we can say you got these on all by yourself!” This was the first time I hadn’t had to hike the pants up in the back. We gave each other a high-five and a kiss. It took him about ten, fifteen minutes, we’d say (since we weren’t expecting it, we didn’t have a timer running ;-)). (A later step will be for him to get them on without use of the electric hospital bed controls and the handrails. He uses the controls to help him sit up so he can get the pants on up to his thighs, and then when he is lying flat again, he uses the handrails to help roll himself from side to side to gradually work the pants on up the rest of the way.)

Coincidently, at rehab, his therapist, the same one he’d had Tuesday, said she’d talked to his regular therapist and they’d decided he should practice getting his pants on. He informed her that he had done that this morning, and since he would be in the hospital bed awhile, it didn’t seem all that useful to practice getting them on while lying on the exercise mat (which would be more like what he’ll have to do when he is in a regular bed). So instead she had him do shoulder flexibility exercises and balance exercises (moving cones on and off a board) and some weights on the cable machine. (When he told me this I said I was still a little worried about him losing strength since they weren’t doing all the exercises he’d been doing before, and he said he would continue to do pushups every morning in bed, like he had started this morning.)

To do the balance exercises, he first transferred onto the mat. The brake on the wheelchair had messed up like it did before (the time we fixed it by taking a hammer to it), so the therapist hung onto the chair and had another therapist help Gary with the transfer. This therapist obviously hadn’t any experience doing transfers (and I assume neither did the one working with Gary as clearly the two of them could have exchanged places), and gave Gary way too much help. I felt a little guilty at this and asked Gary if I should come and help with the transfers, but he said no, that to be independent he needed to learn how to tell people how to help him – he said he should have told the guy that he could do this kind of transfer pretty much by himself but that he sometimes had problems with his balance and all he needed was for the guy to catch him if he went forward or backward, but that he didn’t need the guy to hang onto him and boost him over.

By the way, just to lay it out, it is not good to help someone in a wheelchair unless they ask for help, and not just as an independence issue. If you take hold of the wheelchair and push or something and they’re not expecting it, it could be dangerous, since they have gauged how much force to use in pushing their wheels based on doing it themselves.

The bus that picked him up this morning didn’t come up the drive, the driver saying she thought it too steep for the large bus, so he had a new adventure of going all the way down the driveway – the last part being the problematic part. He wanted to save my back, so he had the bus driver hold onto his chair as he went down the last bit (naturally he was also using his hands on the wheels for his own braking, but the driver was aiding that). Since I’m not an entirely trusting soul ;-), I had a hand on the side of the chair as well.

Around dinnertime Gary thought he needed a little more exercise so asked me to go around the outside of our house with him. Good thing he told me he was going to do this and I therefore accompanied him, because otherwise he likely would have tipped over in going down front patio to the grassy area on the side of our house – the drop-off was a bit more than he expected, the slope of the land tilts down there, he didn’t have his chest strap on, and he fell forward. I had had my hands on the handles on the back of his chair as he started to go off the patio, however, and I gripped them as he went off of it since this was new terrain and I was in better-safe-than-sorry mode, and then I grabbed him around the chest as he fell forward. Since he had his seat belt on, at this point there wasn’t any danger he could’ve have fallen completely out of the chair, but the whole thing scared him because he didn’t hear me say I had my hands on the handles and he thought he was going to tip the whole chair over forward.

He put his chest strap on and tightened his seat belt after that (brings to mind shutting the barn door after the horses have escaped ;-)). The rest of the way around the house was just rough terrain – high grass, a narrow path, the land sloping to the right so he had to keep fighting to go somewhat straight.

We only went around the house once. ;-)

His bedtime transfers from wheelchair to bed haven’t yet become impressive ;-), and after another one tonight where he landed on the edge and had to be yanked back from it, he decided maybe we’d better practice transfers on his non-therapy days. Just doing them twice in a day isn’t giving him enough practice on the technique, and at this point we believe it’s more a matter of getting the technique down than of strength.

Janet Rogers informed me that it is her husband, Jack, who is the real photographer in the family, she having taken it up only recently. He was the one who took the old photos of me, and of Gary and me. She says her main contribution has been in scanning and cataloguing the thousands of slides in their collection, and sometimes cropping and tweaking them in Photoshop. Well, you did an excellent of photoshopping out the toilet bowl plunger from that picture of Tigger, Janet! ;-)

September 19, 2006

Warning, full of random thoughts:

More than once, I’ve driven Gary home from somewhere and gotten out of the car and started into the house before remembering, “Oops, I’ve forgotten something.” Namely him – I’d been expecting him to just get out of the car and walk into the house. Every once in a while, the reality of the situation slips by me.

Having nothing to do with that, the other day I went to the pharmacy to get him some supplies and took the items up to the counter. “Need to pay for that?” the checkout person asked me. “Unless you’re giving them to me for free,” I told her. Sometimes I amuse myself. (The other checkout person also got a laugh out of it.)

A couple graduate students came today and took some of the big stuff – we got rid of the loveseat and one of the mattress sets. No one is grabbing up any of the foam pads, however.

If you want to read about a controversial new bill that was introduced into Congress Tuesday that would defend marriage from sharks, go to http://www.theonion.com/content/node/52984
Thanks, Jamie, I had no idea sharks were perceived as such a threat to this sacred institution.

I think that I should make Janet Rogers my official photographer. I rarely like photos of myself, but she and/or Jack have certainly taken some good ones. Here’s another old one from their collection, which I am putting up for no good reason other than I like it (e-mailers will have to go to the blog, http://drpeg2003.blogspot.com/):

September 19, 2006

Took the car in again today – Sunday I had noticed oil leaking onto the garage floor (didn’t take the car in yesterday because the mechanics couldn’t give me a ride back that day). Fortunately it doesn’t seem to be a huge problem – there are a couple leaks (not being mechanically minded, I forget where the guy said they are). Unfortunately they didn’t have the parts to fix it today, but they said they’ll fix it tomorrow. I left my car with them.

Gary took the bus to rehab, as well as from it to the university and from the university to home, as he has been doing. His substitute therapist at rehab didn’t seem all that interested in what the other therapist had been doing with him. She did her own evaluation, but other than the wrist exercises, she didn’t have him do weights. She is interested in improving his shoulder flexibility and gave him some new exercises for that. Though it’s true his shoulder flexibility is important – today he got his pants on all the way by himself except he couldn’t quite reach around to the back to pull them up the last little bit because of his lack of shoulder flexibility – I worry that she is not going to have him keep up with the weights. Plus, it could be that Thursday he’ll have someone new again, because they’re just getting people to fill in for his own therapist, so if each different person has to do her own evaluation and her own stuff, then he might not be doing anything consistently for the next two weeks. I told him he should do weight-training stuff on his own (he does do theraband exercises on his own on the days he doesn’t have therapy, but that’s not quite the same).

September 18, 2006

This morning Gary said he had proof that I was indeed a saint, because I offered to help him finish up his bowel program. I told him that I had offered because he was whining ;-) about this one taking so long, and I’d felt sorry for him. He said he’d have to remember the whining trick. I told him he better not whine like Blackjack – that kind of whine doesn’t make you feel sorry for him, it makes you want to kill him! Gary said he’d keep that in mind. (He also said it's a good thing we can laugh about it.)

A few graduate students came by in the afternoon and took the racquets, blender, vacuum cleaner, one of the two badminton sets, the old set of golf clubs, and Jarts.

Late afternoon I got a little worried about how Gary was faring – it began to downpour about the time he was supposed to be leaving for home from the university. The bus pulled up the drive, and I got an umbrella to meet him – he had said this morning he was taking his new poncho to school, but I figured it wouldn’t hurt to have the extra protection of an umbrella. He was glad I came out – turned out he had accidently taken his old poncho, which doesn’t have a hood. I wondered aloud why he his hair was dry, and he said it hadn’t started raining until right after he got on the bus – so he was lucky!

For dinner Gary elaborated on the recipe I had in mind. We started with spicy black beans (adding cumin, cinnammon, chives, scallions, jalapeno, fresh oregano, and homemade chili powder to the beans), and I had intended him to have them in a pita bread with cilantro mayonnaise. Gary decided to add feta cheese, tomatoes, and olives to the sandwich, because, he said, pitas are Greek. He said his creation turned out great.

As an addendum to yesterday’s entry:

David Fremlin suggested that finite dissection followed by affine operations could have been tried on the bookcase. Actually, finite dissection was suggested, but fortunately no one had a saw on hand.

September 17, 2006

Judy Roitman sent us an email about the architect and designer Michael Graves, who became paralyzed after a spinal cord infection. One of his current projects is designing home health care products, see http://www.aarp.org/bulletin/yourlife/living_by_design.html

Judy commented to us, I am sure due to yesterday’s blog/email, that maybe he could design a better transfer board. Gary replied to Judy’s email by saying, “Yeah, I need one that doesn't stick to a damp ass!”

We’ll see what Mr. Graves can do – Judy sent him an email about transfer boards being perhaps something he could re-design. I don’t think she mentioned to him Gary’s problematic anatomical area, though ;-)

This afternoon a group (set?) of math volunteers converged on our house. Integral to the operation was Janet Rogers, who tested our limits. Much topological discussion ensued, mainly about how to get the !@#$% (yes, that’s a mathematical term) mattresses down the narrow stairway and out the back door, as well as a bookcase from the small bedroom to the study. I am afraid that no one was able to solve the latter problem in three-space. Trying to shrink the bookcase to a point or bend it in such a way as to preserve volume proved unsuccessful. But thanks to Jack Rogers, Wlodek Kuperberg, Andras Bezdek, T.Y. Tam, Phil Zenor, and Michel Smith for trying. (Others sent their regrets that they were unable to attend the function.)

The group divided the tasks into more manageable units. A truckload of garbage and recyclables was taken down to the curb. Mattresses and sofas and various other things were put in the garage for future distribution to graduate students – or to the Thrift Store or Goodwill, if the students don’t want them. A portable wardrobe and some shelving were moved into the garage as well. A nice desk I had upstairs was moved downstairs to replace the table I’ve been using to set the desktop and my laptop on. (Yes, I’ve run out of math plays on words – feel free to send in any, and I’ll rewrite this blog entry ;-))

When a few of us were in the living room, Michel asked me if I’d ever found my swimming medals (I had had them in the portable wardrobe). I said no. Michel pointed to a lidded, ceramic, decorative pot on a shelf on the cabinetry we have in the family room and said they were in there. This cracked me up – I told him I would have NEVER found them. (Not that I would have been distraught over that, only that occasionally in the past Gary would say something, and I would say, “Ya wanna medal or something?” He’d say “Yeah,” and I’d go get him a medal – a standing joke we had.)

Gary once again got his own meal tonight, using the oven for the first time (on a frozen organic tortellini meal – yes, I’ve relaxed my standards to letting him regularly have canned or frozen natural foods). I was a little dismayed to find him adjusting the temperature of the oven by pushing the button with a long knife – him holding the blade end in his hand and using the handle end to push the button! He said it was a dull knife and he was wearing gloves, but I told him to use his reacher next time.

Tonight he was more tired than he has been lately. He said when we first came home, he was really tired every night, but now he has nights when he feels pretty good. So in general, he has more endurance.

September 16, 2006

Showering continues to be a major effort for Gary (and still shoots practically the whole morning), the hardest part being the transfers using the transfer board when he is unclothed. I had to do more than just supervise today – he lost his balance and fell forward in going from his wheelchair to the shower bench. Fortunately I (and the toilet) caught him and helped him back onto the transfer board. Needless to say, we both agree he isn’t ready to do those transfers unsupervised. I had again suggested he use the long transfer board, but for some reason he didn’t want to. After today’s efforts, he says next time he’ll take my advice (we’ll see ;-)). I think it will help – he can keep his hands on it while pushing down and in this way the board won’t stick to him when he moves; the short transfer board does.

Gary commented that even though taking a shower is work, it is worth it because it feels so good.

I guess Saturday has become our grocery shopping day. We made sure to go during the game so to avoid any crowds ;-).

A big wave to Mom G, who has now joined us in cyberspace – she got a computer from a friend, who also showed her how to set up email, so now she doesn’t have to go to her friend’s to read the blog.

September 15, 2006

I drove Gary to therapy this morning only to find it had been cancelled, the receptionist somehow having forgotten to notify us until too late. Gary’s therapist had a family emergency yesterday and might not be in for the next two weeks. The receptionist said she would call Monday if they got someone to take over for her. As we drove away, I got to thinking it wasn’t a good idea for Gary not to have therapy for two weeks if they couldn’t find a replacement. Gary agreed, and said that since all he was doing there was weights, and he knew the routines, maybe they’d let him come and do them himself and just have somebody else in the gym change the plates on the cable machine for the different exercises. I said that if they were too busy for that, I would do it for him for the next two weeks. He called them on his cell phone while I went into the medical supply store to pick up some “skin prep” he needed. They told him that his therapist was the only licensed occupational therapist they had who comes on MWF, and that even thought doing weights was also physical therapy, since he didn’t have a doctor’s script for physical therapy, none of the physical therapists could oversee him; this of course meant I couldn’t oversee him, though Gary joked they should call Shepherd – after all, it’d been the occupational therapist there who had joked that I shouldn’t do their jobs so well because it would make them lose theirs . Evidently the place here has a licensed OT on Tuesday and Thursday, however, because they said he could come in then, so that’s what he plans to do.

So, anyway, I took him to the university and dropped him off. When I got home near lunchtime, Janet Rogers, who’d come about 9, was still up working in the attic. She had a list of things to ask about, but I don’t think I was all that helpful (“Do you want to keep this?” “I don’t know.” “What about this?” “I don’t know.”). Of her written list of about twenty things, Gary and I (mostly Gary ;-)) decided this evening on all but a few things. But of the things NOT on that list, I’m afraid my answer is still “I don’t know.”

So, anyway, looks like we have a few more things to give away to grad students or to the Thrift Store or Goodwill.

Jack Rogers came after his morning class and helped removed a leaf from the dining table (it hadn’t been removed in about twenty years and there was no way Janet and I could do it!). Gary was thrilled when he came home to find he could maneuver in the dining room again – between the large table and all the shelving in there, he hadn’t been able to much farther than the doorway before. He’d like to reclaim the room as an office/study.

When I got there, Jack had left to bring him and Janet some lunch, and after that Jack left and Janet returned to the upstairs, her goal to clear a path so that volunteers can drag down some of the large things from the upstairs. Originally I think she planned to be in our home a short time this morning, but she stayed until mid-afternoon until I left for writers group! She continues to astound.

When Gary returned home, he told me that since he hadn’t had therapy, he’d gotten some exercise by wheeling from the math department to Haley Center. Since there is construction for a new student center going on in the vicinity, he said it hadn’t been easy. He’d gone around the women’s dorms, been directed up a ramp, and so forth. It was mostly uphill, and he said it took him over twenty minutes. Only about ten on the way back, however.

Gary got a nice card and letter from his old friend Marilyn Foreman. In it, she called Gary a fighter and me a saint. Thanks, Marilyn, but I am sure I am not a candidate for canonization ;-). But thankfully Gary is a fighter.

To anyone who sent me emails last weekend, they seem to have disappeared into cyberspace, so please resend them. I’ve had three people tell me they sent me emails, and I didn’t get them (I did get the ones Janet and Jamie re-sent).

To finish, Janet came across a couple of our wedding pictures, one containing my brother, Joe. I uploaded the pictures to the blog, http://drpeg2003.blogspot.com/

And if a certain someone calls me a hippie wannabee again . . .

September 14, 2006

Gary came the closest he’s ever gotten to getting his pants on himself – just not quite flexible enough in the shoulders to be able to pull them up all the way in the back.

This morning he sat outside waiting for the LETA bus, which he was going to take to school. Having returned from the chiropractor, I stood in the study at my laptop, working on my story. After a short time I looked down at my watch – the bus should have been there by then; I checked to see if somehow I’d gotten so absorbed in what I was doing that I hadn’t heard the bus come up the drive. Nope, Gary was still there. I went back to the computer, and a few minutes later I heard a beeping sound, like the sound garbage trucks make when they’re backing up. I looked out the window, expecting to see the bus coming up the drive. I saw it, but a short ways down the street. Then I saw it go around our cul-de-sac (we live on the end of it) and stop a house away, pointed in the direction away from us. I got worried and went out to the driveway. By that time, it was another two houses away, but stopped. I walked rapidly down the drive, and as I did, it started to drive away. “Hey,” I yelled, running into the street and waving my arms, “back here!”

Fortunately the guy saw me. Turned out he was late because he couldn’t find our street. Then he couldn’t find our house number (evidently not thinking to look on the curb, which is where the numbers are painted – guess I’m not the only non-sensate person ;-)). I’m not sure if he’d simply given up!

For lunch, Gary embarked on his planned adventure: to go from the math department down to the main street that runs by the university and eat at a barbecue place. He said it took him twenty-three minutes to get there, most of that uphill, and ten minutes to get back going in the downhill direction (I asked if he'd mowed anyone down, but he claimed he hadn't ;-)). He was proud of himself for making it (and I was too), and he said it was good exercise. He couldn’t, however, stay on the sidewalk the whole time: the entrance to a motel on that street only had six-inch curbs on both sides, which he can’t yet get up, so he had to go into and along the street for about ten feet in order to find a place he could get back to the sidewalk at. He assured me he had waited for traffic to clear and it hadn’t been dangerous.

For his reward, we made a pizza for dinner. Yes, from scratch. I made my secret dough (Gary says if I ever want to go into another profession, I could sell my pizzas and make lots of money, based on the dough itself – even though it’s simplicity itself), and I had Gary prepare the cheese, the peppers (jalapeno plus a mild one from one of his pepper plants that volunteers had evidently kept alive during our absence), scallions, and olives. I also added cilantro and some homemade roasted red pepper puree from a previous meal to the toppings. Gary said the pizza was, as usual, great, and noted that he hadn’t had one of mine for at least six months.

Janet Rogers had come in the afternoon and worked upstairs for about four hours (!). She told me she’d come at a time when I was otherwise occupied, and I had told her I liked to spend Thursday afternoons critiquing the other members of my writing group’s stories, so she had said she would come then. I am simply amazed at her energy, thankful for her help, and guilt-ridden for not working away right next to her (well, okay, the first two of those three ;-)).

In checking my email, I see Janet has sent me a link to a site warning against the infamous Al-gebra Movement. If you haven't taken precautions against it, you may want to read this:
http://www.murderousmaths.co.uk/alg.htm

September 13, 2006

Gary told me that at rehab he was again able to go up in weight on the wrist curls exercise. He also practiced wheelies again, and said he held one for over three minutes. He said he never achieved the state of zen, however.

In the late afternoon, the cleaning person, who came for the first time last Thursday, called and told us she couldn’t work for us anymore. Grrr.

At bedtime, as I was about to help Gary prone, I told him about my idea for a new kind of hospital bed, Peg’s Proning Pallet. A spatula-type of thing would come out from underneath the bed and flip you over like a hamburger. Good idea, yes?

September 12, 2006

Janet Rogers returned this morning to boot me up the stairs (JUST kidding, Janet. Sorta ;-)). The idea is to consolidate and organize the stuff up there, to hopefully reclaim part of the room as an exercise room as I used to use it as (in the future Gary could conceivably use it this way too, after he is advanced enough to bump himself up the stairs), and to move things from the dining room/storeroom to either up there or to the garage, leaving just the frequently used things and things Gary needs to get at downstairs. We found a few things to send to the Thrift store and made a list with Gary’s help of other things we found that perhaps some graduate students might like: racquet ball and tennis racquets, a mattress, bed-sized foam pads, a blender, an upright vacuum, a couch. (Janet says she’s heard there is some kind of website or something for the university’s graduate students which lists free things they can come and get.)

But most of the stuff upstairs is things I’ll have to decide whether or not to keep – books and, especially, gardening stuff. We did manage to fill about fifteen garbage bags with things to throw out. After about two hours of this, I started coughing – I had been getting rid of old row covers (lightweight spun fiber material that is spread over crops when gardening organically to keep out insect pests) and several bags of dried luffas which I’d never yet turned into sponges (because of the work! Maybe it was because the seeds I bought were mainly for the “eating” variety of luffa, but the mature ones were hard to “skin” after they’d dried on the vine and had been soaked, and it took forever to shake the seeds out), and whatever I’d gotten into set off my allergies. When I gardened, I always wore a mask, and often one of those “paint” respirators, though I don’t know if that was overkill, but anyway, these things minimized my allergic reactions. I had thought about wearing a mask when I worked upstairs today, but I couldn’t remember where last I’d seen them. When I started coughing, Janet said maybe I should go downstairs and get out of “whatever,” and she would do some last finishing up. I didn’t argue. I had suddenly gotten a headache and felt really tired, but I would have felt guilty lying down while Janet was still up there working, so I went through a couple of boxes of papers that had been in the dining room/storage room while she continued working up there. I’m not sure exactly all she was doing, but I think I heard the sounds of sweeping and things being moved, so I think I’ll wait until the dust has settled (literally) to check it out.

She worked nearly another hour (!), and when she came down Gary and I told her she was a great help to us, Gary adding that we weren’t quite sure why she’d taken us on as her project (other than the goodness of her heart, of course! Basically it is just that, we know. She also claimed it was kind of fun – some people have an odd notion of fun ;-)).

After she carted away in her car the stuff for the Thrift store, I went to my room for a nap. I fell asleep immediately, and woke up an hour later. I still felt really tired (I tend to think it was from the allergic reaction more than from the labor), and I kind of dragged around until it was time to leave for my dentist appointment. I had been scheduled to go last April, so I hadn’t seen the dentist since last December. Yikes. There I got the happy news that I have two cavities, so I get to go back in October to have them filled without anesthesia. I am so looking forward to that.

I asked them about Gary coming, and I was told the dentist has several paraplegic patients, so Gary should have no problem with accessibility. The paraplegic patients the dentist has are advanced enough that they don’t need help getting into the dentist chairs, but the chairs lower far enough that I think Gary and I can even do the transfer without the board.

I was still tired when I returned home from the dentist (hopefully I have learned my lesson and will wear a mask when working upstairs from now on; or maybe Janet will realize the reason I put that stuff upstairs is so I wouldn’t have to look at it or think about it for the rest of my life and she will agree this is a good idea. Nah . . . I have the feeling she has my work cut out for me ;-)), but fortunately for me Gary had decided to make bean tacos for dinner, and he made them all by himself, even turning on the stove with his new reacher.

He called our external case manager about the hospital bed being turned down by insurance. She told him a mistake had been made, that it had been put that we were buying it, not renting it. She said a new form will be submitted. Hopefully that will enable us to have insurance pay for it. I asked him if he’d asked about the commode seat, but he said he hadn’t, wanting to concentrate on the hospital bed because it is about twenty times the cost of the commode seat.

Well, just as I was going to end this entry, I checked my email and found one from Janet. She gives the link to a NYT article on interactive web sites for those with serious health conditions. Thanks, Janet -- very interesting. We all sort of discovered on our own the benefits, didn't we?

Here's the link:
http://www.nytimes.com/2006/09/12/health/12cons.html?ref=health&pagewanted=print

September 11, 2006

For the first time I didn’t accompany Gary in therapy, not that I didn’t feel ambivalent about that – but I survived ;-). I drove him there (after making a stop at Paneera’s to get his lunch and by the way they don’t start serving soup until 11), helped him transfer into his chair, then he puckered up his lips for a kiss goodbye. “You want me to go any farther with you?” I asked. “No. But watch from here and make sure I get in the door,” he said with a smile. I told him that even though I knew he didn’t always make it inside the door himself, I was certain someone would help him – whether he wanted the help or not. I then got two surprises – he made it in the door the easiest ever, and no one leapt to his aid (those two facts are probably related).

In the evening he told me that the session had started out with the usual weight-training exercises, and he had again gone up in weight on one of the exercises. The therapist also retested his functional strength, repeating the tests she'd done the first day we went there (she would tell him to resist her as she pushed down on various arm parts), and she pronounced he’d made a great improvement (this doesn’t seem to be a very objective test, however!). They also went outside because she thought another of the curbs was low enough and he could try to practice curbs, but it turned out not to be low enough; he thought he spotted a lower one, so he wheeled over to it, but it wasn’t any lower. So they went inside and he practiced wheelies for a while. He held one for one and three-quarters minutes. The therapists were all impressed, but Gary told me he was sure his Shepherd therapist wouldn’t have been (grin).

The therapist asked him what was new, and he told her he was working on his goal to get more independent at taking a shower. He told her the real sticking point – literally – is his transfers back from shower chair to wheelchair using the transfer board. His skin sticks to the board and he takes it with him. I have suggested he powder himself, though then I’d have to make sure to get the powder washed from his flap afterwards, and this past Sunday I suggested that next time he use the longer transfer board – my idea being that that way he could keep his hands on the board when he transfers, and since he’d be pressing down on it, it would be less likely to stick to his bootie.

On a different task, the therapist also suggested he see if his shoulders are more flexible now so that maybe when he is trying to get his pants on he can reach his hand way around to the back of his pants while he is lying in bed to try to get the pants over his butt while protecting his flap with his hand. (He hasn’t tried to get them all the way up for a long time because he didn’t have that flexibility and the pants were shearing his flap when he tried to tug them up over his butt.)

Evidently this was review day (maybe because he’s been going four weeks now), because she also asked him how he was doing on cooking and laundry. He told her he makes his own breakfast and lunch (though neither of those are cooked), that he can make a taco dinner except for turning on the stove for the frying pan (though now that he’s got a new reacher, maybe he can do that, he told me), and that he helps with the preparation of close to half of the dinner meals (we need to get those seminars moved to an earlier time ;-)). He also is able to bring the dinnerware from the table to the sink and wash them off (though he can't maneuver his chair to get at the dishwasher). As far as laundry goes, he can do everything except put the clothes from the washer to the dryer – well, with his reacher he could probably do that too but it would take him a million years (well, close to it ;-)).

I called him in the afternoon to make sure he’d gotten to the university all right, and then I called again about 5:30 – I’d thought he’d said he was going to be home at five, and I got worried. He told me he’d said 5:30 because he was attending a seminar until five, but that he would in fact be late – the bus had just come. He said the Kuperbergs, however, had been keeping him company. In fact, Krystyna had chased after and flagged down the bus because the driver was new and didn’t know where to go to pick Gary up!

Meanwhile, I spent much of the day revising my story, and I also spent a little time getting some books together for a Friends of the Library book sale that Janet Rogers told me Donna Bennett had told her about. Janet is trying to light a fire under me ;-) to get the upstairs organized (and continue doing so with the downstairs). I confess I didn’t spend nearly as much time on it this past week as I did the previous week. I’d much rather work on my story :-). But I don’t think Janet is going to let up until I get my rear in gear . . . :-) She came over and hauled away a couple bags of clothes for Goodwill, and a couple boxes of books. Thanks, Janet!

September 10, 2006

What we have here is a failure to communicate ;-)

Note to the person not doing the cooking: it is not wise to tell the cook in the late afternoon that you want that whole chicken that was bought yesterday cooked for the evening meal and on top of that, you’d like bread stuffing in it.

Apparently Gary was under the impression that I was going to cook the whole thing today and then he’d have leftovers. I, on the other hand, had figured that someone (hopefully him) was going to cut the chicken into pieces and we’d freeze most of it, uncooked. When he told me he didn’t want to cut it up and couldn’t I do it whole, I said okay, and when he said he wanted it stuffed since I’d bought some herbs yesterday, I said okay, but I wasn’t really thinking of just how long that would take. I still had my exercise routine I wanted to do, and when I finished that I ran off on the computer printer the one recipe (I don’t stuff chickens that often, maybe at most once a year) for bread stuffing that I always follow. Well, sort of follow. It’s pretty rare I follow a recipe exactly and I usually do a some substituting. Sometimes a LOT of substituting, so that the original recipe is pretty much unrecognizable. Anyway, he got the chicken out and prepared it and put it on a baking pan, and then as I was going nuts in the kitchen and telling him that he had to help out by cutting some slices of bread, he said he was sorry, that he didn’t realize how long this would take and that he thought I could just throw a few things together and make good bread stuffing. I said I only knew the one recipe and it was not one I knew how to fool around with. He then realized if I did the whole chicken that we probably wouldn’t be eating for a couple of hours. So he decided to cut the chicken up after all (which he said had been hard enough before his accident and was now even harder), and I made the stuffing separate.

I cooked scallions, a diced apple, sage, fresh parsley and thyme, and a pinch of mace (because I couldn’t find the nutmeg and by the way mace is probably not what you’re thinking) together, then added toasted bread cubes and a cup of freshly pureed apples. This was put into a baking dish in the oven.

While everything was cooking (except the asparagus, which was steamed later), I gave him the extra apple puree. He said it was the best applesauce he’d ever had, and I said it was the apples. He said, no, it was the cook, and I said, no, it really was the apples – all I’d done was puree apples. He was really surprised at this (I used one Gala apple and the other one I think was called a Jazz).

Everything was served about an hour and a half after I had started my part of it. The stuffing turned out really great, he said. Almost worth the effort, right? he joked. Almost, I joked back. It was just at the beginning when I was faced with this unexpected task that I wasn’t all that happy about it, but I got satisfaction in it turning out well.

September 9, 2006

Today, after Gary was fortified with locally made chocolate almond coconut ice cream in a cone, we went on another trek to the wilds of Lowe’s, for things like another waste basket and rubber padding to put his hot food on when he is carrying it on his lap, and to Krogers, for food, to Walgreens, for some supplies for Gary, and to the health food store for more food. Gary had to do quite a bit of wheeling around at Lowe’s in order for us to locate our items, and he was pleased that his shoulders had no problem with it whatsoever. I had been encouraging him to go out on “pushes” to get the exercise, but he had been leery of the effect of doing such on his shoulders (he thinks doing so many at Shepherd was actually detrimental to his shoulders, though at the same time they built his endurance), so maybe this is a sign that soon he will be able to make such pushes a part of his exercise routine.

It took us about an hour to get the things at Lowe’s. Our bill came to about $11. We spent an hour at Kroger. Our bill came to about $150. Yikes! That’s a lot of zucchini! ;-) Total time shopping, three and half hours. Oh, what fun ;-)

September 8, 2006

Well, today we found out insurance won’t pay for the commode seat. This seems preposterous – the hospital bed was never meant to be a permanent fixture, but the commode seat is something he’ll need for the rest of his life. I suggested Gary contact our Bridge Program person, and Gary’s therapist thought it might do some good to talk to the university insurance person. Gary is skeptical either of these moves will help.

At therapy one of the other therapists came through the door from the gym to the waiting room and nearly hit Gary’s wheelchair. Not that it was the therapist’s fault, it was ours, or really, mine. The little waiting room is crowded with chairs along each wall except for right behind the door, and that is where I usually stand, because my leg starts bothering me if I sit (I wonder if there is a Guiness Book of World Records entry for longest time not sitting), and there is also room there for Gary to put his chair against the wall. The therapist apologized, and Gary said that it was okay. When the guy had left the room, Gary added out of the side of his mouth to me as if he were still talking to the guy, “I didn’t even feel it.” This set us both to laughing, but I’m sure the guy wouldn’t have thought it funny, which is of course why Gary didn’t say it to him.

I managed to pay only half-attention to Gary this time, using my other half of attention on editing my story. I can tell you that he again increased weight on one of the cross-cable exercises and on the lat pull-downs, and that he was able to do thirty reps instead of fifteen when he did the “diagonal pain” exercise with his left arm using a two-pound weight – it was just last week when he couldn’t use any weight at all on that exercise.

The therapist thought the curb around the corner of the little group of buildings where the rehab place is might be low enough for Gary to practice wheelies on, so we checked it out. We were in front of a pizza place, and apparently we managed to freak the owner out. First he came running out apologizing that one of his employees was parked in the handicapped spot, and she moved her car, which wasn’t affecting us at all (though, granted, she shouldn’t have been parked there). Then when Gary prepared to try to take the curb (the therapist holding onto the gait belt around his wheelchair’s axle), the guy ran out again and asked if we wanted help getting Gary up the curb. We told him we were practicing. Maybe he thought we were going to report him to somebody, or maybe he was trying to make a good impression so we would order a pizza from him :-)

Anyway, the curb was too high for Gary to practice on, much higher than anything he’d ever done, so after one failed attempt, he passed on trying some more. The therapist told us if we located a suitable curb we could take a little outing one day and Gary could practice there.

Next Monday, the plan is that I will take Gary to therapy, but then he will take the LETA bus to school afterwards and then also home. He is reluctant to take the bus to therapy because they may come fifteen minutes early or late, which means to be sure to make the therapy session he might end up getting there half an hour early, and he doesn’t want to waste that time. So far I have not pointed out that by having me take him, that eats about an hour of my time (that is about what it takes to just help him into the car, disassemble his chair, pick up some food for him, take him to therapy, assemble his chair, and then leave him at therapy and return home). By having him take the bus as he will do on Monday, that will give me about two hours of time back on a therapy day. I haven’t decided whether or not to press for more by having him take the bus to therapy as well (if you’ve been following the blog, you know that I put in other time on his care).

Of course we may have days like today where other things arise that increase “maintenance” time. After I brought him to school and assembled his chair, I was about to help him transfer out of the car when I said, “Something smells.” We looked at each other. “Better check,” he said. I did, and said, “Oh, crap.”

So I had to disassemble his chair and take him home and help him get cleaned up and changed (and he had to do another bowel program session). By the time he was ready to get back in his wheelchair (an hour and a half later), my writing group meeting was about to start, and one member was supposed to be going to talk over some ideas she had after hearing from a publisher and a new member was supposed to be there as well (or so I thought – it turned out she didn’t come). But all week Gary had been planning to go to the math colloquium today. I thought maybe I could just throw him in the car (figuratively speaking, of course) and drop him off, but he wasn’t ready to leave, not having had lunch and still having some cleaning up to do. Though I felt a little torn about it, he told me to go to my meeting, that that was the way it goes. I know he was frustrated with his body and disappointed about not going to the colloquium and he was also sorry that I had to spend the extra time helping him, but I don’t begrudge him the time when it is out of his control. It’s the time that is in our control that we are still working out. ;-)

By the way, the therapist agreed with me that the LETA bus strapping in was inadequate, and she questioned whether the driver had known what he or she was doing (funny aside – I thought the driver was a she, Gary thought the driver was a he; if the same person comes again, I’m not absolutely sure how we’re going to resolve this). She thought Gary should insist on a four-point strap-down, and she also thought the bus should have a seatbelt/shoulder strap for him. So, we’ll see. Gary didn’t seem to be as concerned about it as we were.

September 7, 2006

We found out a few days ago that insurance won’t pay for a hospital table; since it is so much handier to have a table that rolls, we are going to pay for one ourselves (Gary looked into other tables that roll that aren’t billed as hospital tables, but the weren’t any cheaper). Today we found out that insurance also won’t pay for the hospital bed or mattress, which if we get them ourselves would come to $3000. Gary hasn’t decided what to do about that yet – he is worried that at this point his shoulders aren’t doing well enough that he’d be able to do all that swinging of them that would be required for him to turn himself on a regular bed. I suspect he is going to want to keep the hospital bed and mattress for a while – I guess we’ll sell it some time in the future.

For the first time, he took the LETA bus to school – fortunately they did come up our drive. I was a little dismayed to see they don’t secure him in the bus as well as he was secured in the Shepherd bus. In the Shepherd bus his chair was anchored firmly by straps and locks to the floor, plus he had a shoulder and seat belt around him – it took several minutes to get him all secured. In the LETA bus, his wheelchair was quickly secured by two straps put around the frame of his chair and attached to the floor (at first the driver put the straps around his wheels, but Gary told her to put them around the frame because the wheels could come off), and there was no shoulder and seat belt that was attached to the bus – all he had was his own chest and seat belts. Evidently Gary thought that was good enough.

The garage builder came today to take pictures for advertising purposes to potential clients and to collect his final payment. He seems a very nice guy, and he said to let us know of any problems or questions we might have in the future about the garage.

Thanks go to Gary’s Aunt Joyce and Uncle Roland – they sent us a letter and a lap blanket. The blanket looks like it could be handmade, but we’re not sure.

September 6, 2006

Last evening I asked Gary if he’s ever yet had a dream where he’s in a wheelchair. I know that it wasn’t until years after I got CFS that I in my dream had it. Somehow, I was glad of that, as if that meant it wasn’t part of me, and I was disappointed when my dream self also got the disease. I know it’s a different thing, though, having an SCI. Rather hard to deny something so visible ;-). Perhaps I shouldn’t have brought the question up – he hadn’t had such a dream before this, but last night he did. He dreamt he was in the university gardens (where he used to take his walks), and he was worried he’d get stuck.

I took Gary to rehab, and we told the therapist we didn’t know what was going on with Gary’s tip bars. Yesterday at home he had wanted to practice wheelies with the tip bars on (not that I was thrilled by that), but first we were going to make sure that the tip bars would hold, so I got the gait belt and wrapped it around the axle of the wheelchair and around my hand, and he went up in the wheelie. Or rather, he tried to go up in the wheelie – he was on the tip bars before he was at the balance point. Since we hadn’t changed the setting on the tip bars, this confused us; the only thing we could figure out was that all my assembling and disassembling of his chair somehow affected the tip bars (the chair he was using at Shepherd was never taken apart, so we had nothing to base this on other than we couldn’t think of anything else that would affect the bars).

The therapist figured out that it was his foot placement! When she moved his feet further back on the footplate, he got up in the wheelie before hitting the tip bars. I don’t think we would have thought of that. We – or rather, Gary – will have to be more conscious of his foot placement – he is supposed to have the balls of his feet on the plate, and I think he has been having them too far forward lately.

I had intended to work on my story while he was doing weights, but you know what they say about good intentions ;-). First I decided I’d just do the wrist curls with him as always, because that’s the only weights I do there and I figure it’s good for me. Since we started in on the weights after we figured out about the tip bars, by the time we were done with the curls there was only forty minutes left to the session. I rationalized that I wouldn’t be able to concentrate on my story in that time because I am doing some nontrivial cutting out of unneeded plot threads and some rearranging of material and a lot of changing of dialogue (I conjecture that it is going to be harder to revise the first half of the story than the last, because when I wrote the first draft the characters and the plot weren’t clear in my mind at the start and I threw in everything but the kitchen sink. Well, I probably have the kitchen sink in there, too). But even if I hadn’t had that excuse, I am such a busybody about what he is up to I don’t know if I could be at rehab with him and not get involved with whatever he is up to. He playfully mocked me after the session. “I thought you were going to work on your story. Instead, you’re over with me telling me, ‘That looks too easy – sure you don’t need more weight?’ ‘Control your movements, don’t use momentum.’ And when the therapist said I was done, you go and say, ‘He hasn’t done lat pulldowns in a while. Was that intentional?’”

Which it wasn’t, and when she asked if he wanted to do them, he said sure. Fortunately he wasn’t dismayed I had brought that up. I’m always willing to make him work ;-)

He again showed definite signs of progress during the session. He hadn’t done triceps presses in a long time, and he added three plates to the exercise and said he could go even heavier next time. He added a plate to the rows, and after doing thirty reps, he said he could try heavier. So I added another plate – it turned out he couldn’t do those completely on his own, but with me holding his shoulders so he wouldn’t fall forward, he cranked out thirty reps of those, too. On the “diagonal pain” exercise, on his “bad” side (left shoulder), after doing thirty reps with a one-pound weight like last time, he was able to do fifteen reps with a two-pound weight. Finally, he added a plate to what he could do before on the lat pulldowns.

I don’t know if I’ve added any strength to what I came home with, but my massage therapist, who I saw today, says I definitely have more muscle in my arms and back and calves than I did last April.

I had arranged to have my massage to finish about the time Gary finished with his seminar. I called him on his cell to let him know I was coming, and he met me at the place I’ve been parking. First I noticed his pants were covered with chalk. I told him that at least that covered the stains and that I hoped not many people had noticed his pants needed washing – after we’d gotten them on him this morning, we’d both noticed they were filthy, but neither of us were in the mood to go through the rigamarole of taking them off and putting another pair of pants on him.

He got a call from someone who is also very interested in having a traffic light put where his accident occurred – this woman had told him she’d nearly been in a similar kind of accident. Today she told him she noticed there is an electronic traffic counter near the intersection – for the study they are doing.

While we were going through Gary’s stretching routine, he mentioned he was having phantom sensations. I thought he meant this was new, but he says he’s had them since the accident, though he’s never mentioned them before. He says they aren’t painful, but they’re like electric charges, and he knows they aren’t real because they don’t occur where his legs really are. He said that for instance, he now felt like he could feel that his leg was lying on the bed, only it wasn’t because at the time I had it straight up in the air doing a hamstring stretch on it.

For some reason he started thinking about the first day he’d gotten to eat, after the trache tube had been removed. All the food had been colored green because the therapist was watching it with a little camera to make sure it didn’t go down his trachea. He said despite its color, it had tasted great. He said he remembered really wanting a milkshake, and that I’d gone and got him one.

He said he also remembered how his voice was so weak at the beginning (I told him he’d sounded like Donald Duck). He remembered how nice it had been that his first talks to someone besides me or the hospital staff had been to our moms for Mothers Day.

September 4, 2006

We interviewed another person for the housecleaning position today. She seemed like she’d be good, and she certainly is tender-hearted. She told us she rescues abandoned cats, and as she left she looked down at our threshold and said, “Come here, sweetie.” She then proceeded to move the caterpillar that was there so we wouldn’t step on it.

I spent the day doing a little organizing and working on revising my story. Gary worked on Topology Proceedings stuff, among other things. For dinner he wanted to try the Alaskan smoked salmon his family had sent but wasn’t sure what to have with it. I suggested he have it with fresh bread and goat cheese, which he did and said was very good. Just in case you ever want to try it ;-)

September 5, 2006

This morning before we started the part of the routine I help Gary with, he practiced turning onto his right side and padding off the position properly after being on his left side for several hours. He did it quite adequately. He is more comfortable sleeping on his left side (because of his shoulders) but would like to try to do his bowel program while lying on his right. It is supposed to be anatomically better to do it while lying on the right because of the way the bowel is coiled in the body, but he hasn’t been doing it that way because of his bionic finger – it was too stiff to do the rectal stimulation. Now his finger is much more flexible than in previous months, and he is much more hopeful it will return to full function.

We had another interviewee for the housecleaning job this morning, and we liked her too. But we made the rational decision – for the position we chose the person who saved the caterpillar.

The painters came and finished the garage and breezeway, so I believe the job is finished! Yesterday I noticed that there is a metal eagle up on the garage below the decorative circular window. Don’t know when they put that up, could have been a week ago ;-).

Gary talked with a state engineer about putting up a light at the intersection where his accident took place. The guy said the study that would determine whether or not there is enough traffic to warrant a light being put up there is taking place this week. So everyone who reads this blog should go travel those roads constantly for the next few days ;-) (and if you do, be very careful!).

Last night after we finished bathing the front half of Gary, in order for me to get the back half he needed to prone. As usual, because this takes place after we stretch him, he was too far to the middle to be able to turn into a prone, so he said, “Now I need to get my upper body over farther to my left,” and looked at me expectantly. “You’re going to do that, are you?” I replied as I wrapped my arms around him and tugged. “Yes, your body is an extension of mine now,” he joked. (Gives new meaning to “the two become one.” ) So tonight, when we were about to do the same thing, Gary recalled the moment by saying, “Now we’re going to move our body to our left.” :-)

September 3, 2006

Figures. We hire the most professional-sounding housecleaner we’ve ever interviewed and she doesn’t show up for her first day of work (today) and doesn’t call. I’ll never understand why people do that kind of thing.

So, anyway, it’s back to interviewing housekeepers :-(

I called my mom this morning. Among other things, she told us how Gary inspires her – whenever she gets frustrated at how long it takes her to do things that she used to be much quicker at, she thinks of how much longer it takes Gary to do things and how well he is handling that reality (when Gary heard this, he commented that it’s not like he doesn’t get frustrated sometimes, but I said I am sure that happens a lot less often and to much less a degree than it would to most other people).

Today my main organizational accomplishment was sock sorting. I went through a huge bag of all my socks that the volunteers had collected together. I found thirty pairs. Very few of those are wearable, actually, as most are full of holes or stained or stretched out of fit because they’re so old. Others are thick woolen things only wearable on a seasonal basis. But for right now I was mainly interested in just finding matches. Besides the pairs, I came up with fifty-two unmatched socks. I decided to no longer wait for their mates to appear from the fourth dimension (since they haven’t in the past twenty years) and threw them out.

Our excursion today was to the mall to buy Dockers for Gary – he needs to get them with the waist a size bigger than before the accident (even though he weighs less, his abdominal muscles don’t function to keep guts tight). He had brought with him a pair of Dockers he had gotten over the internet to exchange them in the store of the same name, and after we went to the counter the woman informed us we were in the wrong store. Naturally, neither of us had looked at the name of the store we had entered, each of us following the other assuming the other knew where he or she was going. A foolish assumption on our part, and you would think we would know better after twenty-five years ;-).

We went to the correct store, and it turned out they didn’t have the size Gary wanted, so he will have to get them over the internet after all. The excursion wasn’t a total loss, however, as I did get five new pairs of socks. Plus we ran into the Mincs and had a nice chat with them. Oh, and Gary got an ice cream cone on our way back home, which is probably the only reason he wanted to go out anyway ;-)

During the transfer out of the car, I heard some clunking and told Gary I thought he was hitting his knee on the dashboard and that he needed to be conscious of that, as its happened before. He said maybe it was his head that was hitting the doorframe. So I asked, “Well, you could feel it if it was your head, couldn’t you? You can feel this, right?” I gave him a playful knock on the head. “Ow,” he faked. “Don’t do that. Now I have a C minus two injury.”

I assume it was because he was thinking of the LETA bus that he then wanted to see how far down our driveway he could get in his wheelchair (with me with him, of course – he had the sense not to be comfortable doing this alone). The last part, we confirmed, is definitely too dangerous for us to attempt even with me hanging onto the back of his chair.

We had a Blackjack breakthrough in the afternoon – the cat came up to Gary while he was in his wheelchair, asking for petting. :-)

During our evening routine, Gary asked if I wanted to stay overnight in Atlanta when we go back for Gary’s follow-up appointment with his Shepherd doc at the end of this month, or if I just wanted to drive up for the day. He noted that if we just drove up for the day, we’d have to get up a bit earlier than usual but would be home by late afternoon. He then noted that if we stayed overnight that we’d have to contend with finding a suitable place to stay, that he would have to sleep in a regular bed, which he isn’t used to and would require some adjustments to his/our routine, and that I would have to pack up all the supplies he needs and also all the supplies I would need, which I’d then have to unpack in Atlanta, and then I’d have to do pack and unpack them all again the next day.

I’ll bet you can guess what my choice was.

September 2, 2006

This morning Gary told me he forgot to ask LETA if they would drive their bus up our driveway, a concern, Gary said, because he can’t get up it or down it himself (it is very steep). Then he amended that, saying that he could get down it one way or another, but that might cause other problems. “Yeah,” I agreed, “they’d have to scrape you – ” “Off the side of the bus,” Gary finished.

So, we will have to check after Labor Day into whether the bus will come up the drive.

Another hitch in the plans. Gary looked at the brochure on LETA that arrived in the mail today. Apparently, even though you make your request for them to pick you up at a certain time, they may come up to fifteen minutes before that or after that due to the popularity of the service. This is making Gary reluctant to use them to go to therapy.

Well, you’ll have to stay tuned to see how this plays out.

We had another wet run this morning, Gary again doing the transfer to and from the shower bench by himself with the board (me supervising). I even left during part of the shower (staying in hearing range), knowing it wouldn’t be for long so it wasn’t really so I could do other things but just so Gary could feel like he was on his own in there (I was in the small bedroom and I admit to jumping when I heard a clunk, though I immediately realized it couldn’t have been caused by a body hitting the floor – he’d dropped the bottle of soap). He called me back to get the soap, and also(as a safety precaution)when it was time for him to lean way over to his side on the shower bench , and then again to wash and dry his lower legs and feet (though it is theoretically possible for him to his legs and feet himself, since he can’t bend forward because of the flap restrictions, it is “too much work” (Gary’s words) to do so – I believe I explained before what this would involve, so I’ll spare you ;-)). I stayed after that and supervised his transfer back to the wheelchair (the shower curtain trick worked, by the way – he was able to push his chair out of the way, cover it with the curtain, and then retrieve it after the shower, and it didn’t get wet).

We guess that it is because of the angle he has to have the wheelchair in in order to do the shower transfers as opposed to the bed transfers, these are still quite a lot of work for him, especially the one back to the chair (maybe because in addition to the other factors it is slightly uphill); he said that at this point he would definitely not be comfortable doing this transfer with me not in the room. Being naked also adds to the difficulty of the shower transfers – his skin, unlike his trousers, tends to stick to the board. Maybe we’ll have to powder the board (or him).

When he was in the chair I got his ted hose and pants and shoes on him, then left him to finish his dressing and grooming. He told me afterwards that he can now get his shirt on in one minute. He said if he could do that with his pants, then he’d really be cooking. Then he added, he'd like to be able to get his pants on, period.

Related to that, we got our final bill from UAB hospital today. $100. We think they should pay us (and a lot more than that, given these ongoing flap restrictions!). (If I remember right, I think the total cost of Gary’s stay at UAB was close to a half a million dollars – fortunately insurance paid for all but a couple thousand.)

Our outing for the day was to the grocery store. I have made a point of staying in the background when we are at a counter (like at the fish counter or the deli or at the checkout line) and “forcing” people to address and deal with Gary (and to let him get the practice of paying for stuff ;-) – I don’t know if it’s true, but I thought I noticed a tendency when I was right there next to him for people to address me. Now, since he’s a man and we still live in a man-centered world, this would never happen if he were able-bodied (this I know from our outings together when he WAS able-bodied), so I have to conclude they are behaving this way because he is in a wheelchair. So I figure the benefit is two-fold – Gary gets to exhibit independence, the other people learn to deal with someone handicapped.

September 2, 2006

This morning Gary told me he forgot to ask LETA if they would drive their bus up our driveway, a concern, Gary said, because he can’t get up it or down it himself (it is very steep). Then he amended that, saying that he could get down it one way or another, but that might cause other problems. “Yeah,” I agreed, “They’d have to scrape you – ” “Off the side of the bus,” Gary finished.

So, we will have to check after Labor Day into whether the bus will come up the drive.

Another hitch in the plans. Gary looked at the brochure on LETA that arrived in the mail today. Apparently, even though you make your request for them to pick you up at a certain time, they make come up to fifteen minutes before that or after that due to the popularity of the service. This is making Gary reluctant to use them to go to therapy.

Well, you’ll have to stay tuned to see how this plays out.

We had another wet run this morning, Gary again doing the transfer to and from the shower bench by himself with the board (me supervising). I even left during part of the shower (staying in hearing range), knowing it wouldn’t be for long so it wasn’t really so I could do other things but just so Gary could feel like he was on his own in there (I was in the small bedroom and I admit to jumping when I heard a clunk, though I immediately realized it couldn’t have been caused by a body hitting the floor – he’d dropped the bottle of soap). He called me back to get the soap, and also when it was time for him to lean way over to his side on the shower bench (as a safety precaution), and then again to wash and dry his lower legs and feet (though it is theoretically possible for him to his legs and feet himself, since he can’t bend forward because of the flap restrictions, it is “too much work” (Gary’s words) to do so – I believe I explained before what this would involve, so I’ll spare you ;-)). I stayed after that and supervised his transfer back to the wheelchair (the shower curtain trick worked, by the way – he was able to push his chair out of the way, cover it with the curtain, and then retrieve it after the shower, and it didn’t get wet).

We guess that it is because of the angle he has to have the wheelchair in in order to do the shower transfers as opposed to the bed transfers, these are still quite a lot of work for him. Being naked also adds to the difficulty – his skin, unlike his trousers, tends to stick to the board. Maybe we’ll have to powder the board (or him).

When he was in the chair I got his ted hose and pants and shoes on him, then left him to finish his dressing and grooming. He told me afterwards that he can now get his shirt on in one minute. He said if he could do that with his pants, then he’d really be cooking. Then he added, if he could only get his pants on, period . . .

Related to that, we got our final bill from UAB hospital today. $100. We think they should pay us (and a lot more than that, given these ongoing flap restrictions!). (If I remember right, I think the total cost of Gary’s stay at UAB was close to a half a million dollars – fortunately insurance paid for all but a couple thousand.)

Our outing for the day was to the grocery store. I have made a point of staying in the background when we are at a counter (like at the fish counter or the deli or at the checkout line) and “forcing” people to address and deal with Gary (and to let him get the practice of paying for stuff ;-) – I don’t know if it’s true, but I thought I noticed a tendency when I was right there next to him for people to address me. Now, since he’s a man and we still live in a man-centered world, this would never happen if he were able-bodied (this I know from our outings together when he WAS able-bodied), so I have to conclude they are behaving this way because he is in a wheelchair. So I figure the benefit is two-fold – Gary gets to exhibit independence, the other people learn to deal with someone handicapped.

September 1, 2006

Today I suggested to Gary that he take the LETA bus to and from therapy starting next week, and he said okay and that he would also start taking it home from the office. I’d figured he would react along those lines, but I’d been a little afraid he’d be disappointed I wasn’t going with him to therapy, which would give a pinch to my heart. I had brought the topic up because I am feeling the need to get back to doing some of “my own thing” now. Of course I still help him from about 8am to 9:30 am (or later if a shower is involved) for the morning routine (he starts it at 7 am), and from about 8pm to 10pm for the evening routine, and with other things besides his routine that he needs my help on that come up during the day (and night, though fortunately that has become rare, she says with fingers crossed)). But basically all I am at these therapy sessions is his cheerleader – it’s not like Shepherd, where he was doing a variety of things and I was helping out, enabling him to become more independent; here he has basically just been doing weights. Of course I will go to the sessions when he is doing something “fun” like practicing wheelies, which the therapist said they may do next Wednesday, or if he is learning some other skills, but otherwise, on plain ol’ weight-training days each of those sessions use up three hours of time (counting the transportation, transferring, etc.) that I would now like to use in other ways (most particularly, in writing-related activities, though some of the time will, for the present, have to be spent in organizing the house).

My other decision of the day: to have as a goal to throw/give away half of the stuff Janet and Donna and I sorted the other day. I did manage to throw away half of my T-shirts (the ones with the stains). I guess sixteen T-shirts is enough to hold me (I used to collect them at swim meets and math conferences and so forth). I went through the other piles but didn’t reduce them nearly as much. The effort, however, exhausted my enthusiasm for organizing today ;-)

This evening at dinner Gary mentioned that he’d noticed the calender on his wall at school was still on April. He said he’d noticed that the day of his accident was Good Friday. “You didn’t remember that?” I asked. He said no. He said he wondered if that was why my sister Janet had made a reference to the resurrection in one of her emails. I told him I thought she had gotten the reference from something I said, and I reminded him about what I’d read to him on Easter Sunday. He said he had absolutely no recollection of that. “Read the blog,” I told him with a smile. He asked if he could now, and I said yes, provided he started chronologically.

As we did the stretching routine later tonight, he said he had done a search (I’m not sure if he did it of the blog or of the webpage where everything is in chronological order) and found the Easter reference. He said it made him cry but he still had absolutely no recollection of that day. He then said he noticed I apologized for writing about myself on the blog and said he thought that the best part of the blog was when I wrote about what I was feeling about what was going on, which touched me but made me feel shy.

I asked him what he did remember about those days in ICU. He said he remembered he lived for my visits, that the staff would only let me stay for such a short time and he always looked forward to the next visit and he would keep track of how long it would be before I’d be there again, but that he would get confused about when the next visit after that was and so would always ask me when I was about to leave when the next time was that I could come (I remember that!).

He remembers all the visits made by family and friends during that time. He also remembered laughing when the male nurse threatened him with a visit from Bobby Lowder. :-)