Jan 26, 2007

I took Gary to the urologist today, and the focus was Gary’s “leaking problem.” The doctor seemed very knowledgeable about spinal cord injuries and their effect on the urinary system, which was a relief. In fact, he explained the effects much more thoroughly than Gary’s doc at Shepherd did, though we are sure that is because that doc’s manner with patients is brusque. (Gary parodied it as, “You don’t need to know that, go away and don’t bother me.") This local doc mentioned how the kidneys can cause a lot of problems (in fact, kidney problems used to be the #1 killer of those with SCIs). He said that the signal to the bladder is relaxed – hyporeflexive – so the bladder doesn’t know when to contract and relax. This evidently causes high pressure on the bladder, which puts pressure on the kidneys. The problem with that is made worse if there is some infection in the bladder, because that infection can then travel to the kidneys. So the goal is to keep the pressure in the bladder as low as possible and to keep the bladder as clean as possible (i.e., free of bacteria) – by using “clean technique” in doing the Ics.

To deal with the leaking problem, the doctor suggested three things. First was to have x-rays done of the urinary tract (kidneys, the bladder, the ureters, and the urethra) – the test is called an IVP. Gary is having that done at the hospital (tomorrow, the 31st). Normally one is supposed to drink a prep that “cleans one out,” but fortunately the doctor said Gary only has to prepare by sticking to a clear liquid diet from 4pm on. Thank God – I would hate to have my saintliness be tested by having to clean Gary up all night long due to the effects of a laxative. Gary considers having to be on a clear liquid diet that long sacrifice enough. We are going to take quad pillows to pad him off so he isn’t lying on that hard exam table for hours (the test is supposed to take an hour, but we are supposed to allow 2- 2 ½ hours from arrival to departure). Also we are hoping they let me back in there with him because it would seem like he would need help in doing weight shifts while on the table.

The second thing Gary will have done is a urodynamics test to see what his bladder is doing. The bladder will be filled and a catheter put in that has a pressure sensor, to measure the pressure at various times. The test will also measure how well the bladder muscle stretches during filling, how well it holds the urine, and how completely it voids. Gary will have this test done the last week in Feb.

The last thing the doctor suggested is that Gary go on a medication called Vesicare. The doctor suspects Gary’s bladder is contracted and spastic, so in between his IC’s it is spasming (LOL -- I first wrote "spamming"). The med will relax the bladder and allow it to hold urine longer. The doctor said the side-effects are typically dry-mouth and constipation. He says children with spina bifida are on such meds from birth and no long-term side-effects have been noted other than the above. So far Gary hasn’t noticed any side-effects but neither has it stopped him from leaking. He read somewhere that it may take a few days before effects are noticed.

I took Gary to the university afterwards. As I pulled into a parking lot, someone swung around the corner of the parking lot that attaches to it (making a T with it). The driver had her head turned and was talking and laughing with her friends. I hit the horn, which fortunately stopped her from plowing head on into us. She smiled at us and drove on. Meanwhile I’m having a heart attack.

Jan 7-23, 2007

Oh, dear, I have been derelict in my duty. I got engrossed in a guilty pleasure, and I wasn’t able to set it aside long enough to keep you guys updated. Yes, I admit it, I succumbed to writing a short piece of RS fanfic. It was a very weird experience. I felt guilty about setting aside my work on my novel in order to work on a “frivolous” piece. I call it frivolous because I knew from the start I wasn’t going to put my heart and soul into it for a long time and try to turn it into something truly memorable – I was writing it for fun, and hopefully to amuse fellow like-minded Steele fanatics. But I got sucked in by it and spent more time on it than I had intended (though I am glad I didn’t finish it with the first draft). I think it’s almost ready to be posted to the fanfic group, but this depends on final comments by certain reviewers of the story. Actually, I think I have pretty well lost my objectivity on how it reads – after reading it a zillion times, I no longer know if what I originally thought was funny is still funny.

Okay, so to update you on the goings on. After the scare on the 6th of Gary nearly falling out of bed, I persuaded an initially reluctant Gary that it would be best if I put his bed rails up after he transfers into bed at night. Better safe than sorry. Occasionally he still delays a bit longer than I’d like in calling me in to lift the rails, saying that he’s more careful now that he knows there’s a possibility he could fall out of the bed (famous last words). I keep the rails up longer in the morning, too. When he’s all dressed and ready to get up, he always calls out and asks me to let him out of jail. I ask him if he’s served his time, or if he’s made bail, etc. Have to think of some more responses . . . .

We talked to Norma on the 7th. A topic that came up was about him visiting his family in summer. I overheard him tell her he’d like to do that if possible, but would probably need me to do so. He brought it up again at lunch. I confess, I started worrying about the effect of such travel on my back, but when I looked up from my thoughts I found Gary crying – he repeated that has been worried from the start he won’t be able to visit with his family. So I gave him a hug and told him of course he would. So we have tentative plans to go to Nebraska this summer. Not sure if we’d fly or take the van which we hopefully will have in the near future. (Concerning the van, our application for funding help from the state has been turned in. Who knows how long it will take to get through the beauracracy.)

On the 8th, Gary tried out the gym at the university. They have a cable machine, so he did essentially the same exercises as he did at rehab. His “personal trainer,” whose title Gary says is “Director of Health, Wellness, and Fitness and stuff like that,” noticed Gary struggling to make thirty repetitions on some of the exercises, and said that they would reduce the amount of weight on the machine so Gary can keep his form. The director said he may also have Gary go to 3 sets of ten instead of one set of thirty, this to work on strength rather than endurance (and in fact, on the 22nd this is what he did).

In order to get back to the math department, Gary had to go up a big hill. He wasn’t sure he could make it by himself, so when someone asked him if he wanted a push up it, he accepted. I told him he was a wimp ;-), but he protested that I should give him a break, that he’d just had an hour’s worth of weight training. Poor baby ;-)

Once up the hill, he couldn’t figure out how to get to the front entrance of math building – there didn’t seem to be a direct route. All three sidewalks leading to it are being repaired in places, with 6-foot sections covered by straw and mud. He didn’t want to try wheeling across those. So he ended up having to go around to the back of building. At least he got good exercise ;-)

On the ninth, he taught his first large class since the accident – linear algebra. I went to the first thirty minutes of the class – just because. I don’t know what I expected – a marching band heralding his triumphant return, I guess – but the students didn’t act as if anything out of the ordinary was happening. I guess that’s good.

On the tenth, I went to a different chiropractor than the one I’ve been using since returning home – he was into “Zone therapy,” and I decided my zones had zoned out. The new chiropractor has a decompression table – think of it was being stretched on the rack (at the hips). I had had this modality (such an impressive word) tried on me before and had thought it might be helpful. But I had only had it done a couple of times before Gary had his accident, and the chiropractors in Birmingham and Atlanta didn’t have such a table. I didn’t go back to the same chiropractor as back then, though, because I thought there was something fishy about his billing – four months after I last saw him, I was still getting bills from him. At the time I was too preoccupied with Gary to figure out what was going on, so just paid them. I finally sent a note with my last payment saying the next time I was sent a bill I wanted a clear explanation of what it was for. I never heard from them again. I figure I wouldn’t be able to make head or tail of their books if I demanded they show them to me, so I’m just writing that off. At least this way I won’t have to listen to the Christian music that he has constantly blaring at eardrum-shattering levels (maybe he has it that loud so you can’t think and wonder just what those bills are about).

Anyway, no only does this new chiropractor put me on the decompression table, but they also do ultrasound micro-massage on me and EMS – electrical muscle stimulation. (Now it is the 23rd and I have noticed some improvements in my pain level that I attribute to these modalities.)

On this day, the 10th, when Gary wheeled all the way around to the back of math building on account of the broken sidewalks, he discovered the elevator was out! He gave up and and called one of the math secretaries to wheel him around to front. Gary told me that his trainer, whose specialty is exercise science, said he may also occasionally, to work on power, decrease the number of reps and weights and increase the speed of performance.

On the 11th, our housekeeper showed up for the second time in a row. We are on a roll!

We got a nice email card from Joe and Dolores, a recounting of their year for family and friends. It came with pictures showing the forty-four inches of snow that inundated the area where they lived! In the email she told about how Joe had devoted himself to the remodeling of our home, with help from the math dept volunteers. She noted everyone needs a brother like Joe. Ain’t that the truth! The two of them are coming to visit in early Feb., and they will be bringing their dogs. I’m sure our cats are thrilled. I am looking forward to meeting them, however – I’ve been hearing for years how cute they are (and not just in looks).

We continue to find amusement in little things. One favorite activity is to discover just what Gary has on or under his feet. One day after his weight training, as he was wheeling back to the math building, he noticed he had a sock lying across his feet. Evidently he’d dropped it there when he was putting his dirty socks in the laundry. I didn’t notice it before he left the house. If his trainer noticed it, he didn’t say anything. Gary also found a key on his footplate after he transferred into bed one evening. Evidently he’d dropped his office key without noticing, and that was where it ended up.

On the 15th, Gary finished the DVD of Alaska that Norma had recently sent – it was a documentary of their entire journey. Gary said it was fantastic but noted that the “Hi, Gary”s were much more enthusiastic at the beginning of the DVD than at the end – I mean, really, just how much can kids be told to say “Hi Gary!” before the thrill wears off ;-)

On the 19th, Gary made it up the hill entirely himself. The previous time he was going to try it himself, a student asked him if he needed help and he declined. But the student turned off his car and ran over to help Gary up the hill anyway. Gary decided not to put up a fuss.

Our maid is continuing to show up. Not only that, but she can clean. So we are happy. Fingers crossed.

Let’s see, anything else . . . . Oh, yes. Gary transfers between the futon and his chair by himself now, without even telling me he is doing so. The only in-house transfer I have been still helping him on is the shower transfer – but, we just today (the 23rd) got the raised toilet seat, so I will be helping him with that. He also transfers into the car by himself now. I still guide him on the way out – he is going backwards then, and we don’t want him going right off the board, since he can’t feel it.

He still has the booty rash, so we are calling the bridge nurse at Shepherd to see what our next step on that should be. Not related to that, I am taking him to the urologist on Friday. One thing we’ll ask him about is the leaking problem. It stops when Gary is on antibiotics and starts in again after he’s through with the antibiotics, so, we don’t know, maybe he has a near-constant low-level urinary tract infection.

He is participating in a study by the University of Washington on fatigue and pain in people with spinal cord injuries. He doesn’t think they’re really the kind of subject they are looking for, however, because he’s not troubled by these. Thank God.

That’s all I can think of, so, all for now!

Jan 5, 2007

We found out that insurance will pay for that second round of Day Program. Evidently it is not usual that they do so, but the insurance representative got together with the Shepherd people, who told her how valuable the program had been for Gary and what his accomplishments had been, and insurance then agreed to pay for it.

We are, however, having problems getting the new-model raised toilet seat. Our supplier won’t take back the old one they gave us and exchange it for a new one, they say because they never charged us for it. Fat lot of good it does us, since it is something he’ll never use.

It would be nice if little frustrations would go away. Gary has evidently developed an allergy to latex – or maybe to the powder on the latex gloves. He got rid of the rash on his hands by putting on vinyl gloves first and then latex ones over that (he needs to wear two pairs of gloves for the bowel program, and the vinyl ones are hard to get on). But for some reason neither of us thought about where those latex ones still touch him. So now we have booty-rash to contend with.

Jan 6, 2007

A little unwelcome excitement tonight – Gary lost his balance while sitting lengthwise on his bed, and the top half of him went off the bed. Fortunately, I was in the room, since he had recently called me in to put his pillows on his bed for him, and I ran over as he was falling (me, yelling “Gary!”, him, saying "Oop!Oop!Oop!"). I dove and caught him and heaved him back onto the bed. He said it was a good thing I'd been there and noted we almost had had an opportunity to try a floor-to-chair transfer. I was shaking.

Jan 2, 2007

Quote for the day: “There is a fine line between tough love and cruelty.”

– Gary Gruenhage

The above was prompted when Gary called me into the bedroom after he’d transferred into bed and told me he’d knocked one of his urine bags onto the floor and would I pick it up. I told him he could transfer back into this chair and wheel around to the other side of the bed and pick it up himself. Maybe he was also thinking of how, earlier in the day, he called me into the laundry area and, with a big pile of clothes on his lap, told me he’d dropped a sock and would I pick it up. I told him it would be a good balance exercise if he picked it up himself. He said that then I would have to pick up a lot more clothes. I said no I wouldn’t, he would.

(And yes, we were joking around both times, and I picked up the bag and the sock for him ;-))

Jan 1, 2007

Gary said he happened to look at the blog entry for May 31st. At that time, the therapists had thought we might have to hire help when we got home. They thought Gary might need one of those portable hoyers – at that time he couldn’t lift himself up in a depression lift for more than two seconds (I remembered that he couldn’t lift his head off the pillow), and we weren’t sure that with my back I could even operate the hoyer. We are both very happy not to have had to contend with that!

The new housecleaner is coming Thursday at 1. “Or so she says,” to quote Gary. ;-)

Dec 27, 2006 – Jan 1, 2007

Happy New Year!

A smattering of thoughts since the last entry.

Turns out the quotes for modifying a Toyota Sienna were turned into the Voc Rehab Dept. on Dec. 11. The person who needs to review them is out of office until Jan. 3 – don’t know when she left the office, but since there was no message from her left while we were in Day Program, we assume she hasn’t done any work on our case. She is the one who will tell us what, if anything, the state will pay for the modifications.

On the 27th Gary went to another party. I took him to the Kuperbergs. We got to practice curbs, because in order to get the wheelchair into the house we went in the back way, and there was a step up to a porch and then another step up from the porch into the house. Wlodek offered to help, but I wanted to do it, since Wlodek isn’t going to necessarily be around when Gary needs to get up such a curb ;-). It went fine – perhaps the height was a little higher than we’d practiced at Shepherd, since I found that I had to tilt Gary back a little when he did his stationary wheelie in order to get the castor wheels up on the next level, whereas at Shepherd Gary got the wheels up on his own, me just holding his push handles.

I went home and ate and laid down for a while – I was feeling tired. Besides, I’d met my quota of one party every fifteen years ;-). When I went back to get Gary, Pam Holmes came up and greeted me. Soon after, she was snapping photos of Gary and me. A inordinate number of them, I thought :-). Later I asked Gary if she’d been taking photos of everyone. Gary said he didn’t know, that he hadn’t been aware of her taking photos. He then mentioned that there is a woodpecker (the ivory-billed, I later found out) that was thought to be extinct but recently people have claimed to have evidence of; in fact, researchers from our university claim to have evidence that suggests the bird is living along a river in the Florida Panhandle. Evidently no one has a clear photo of it, however – just blurry video. Gary then went on to say that perhaps Pam felt this was a rare sighting of the “Peg Daniels bird” and she now has photographic proof that it is not extinct. Ho-ho ;-)

Gary found an email group on the web of people with SCIs. He says there are some stupid ones out there. One paraplegic said he'd fallen out of his wheelchair, and although it hadn't hurt (he has an incomplete injury, so there was the possiblility it might have), his leg had swollen to twice the size of the other one, and when his knee was in bent position, "something funny sticks out." He wondered if he should go see a doctor. Another paraplegic had a sore on his butt. He wasn't sure if it was a bedsore, but it bleeds when he touches it. He too wonders if he should see a doctor. Duh!

Gary has another common problem of paraplegics: his hair sticks straight out in the morning. Pre-injury, he would dunk his head under the faucet in the bathroom sink. Unfortunately, he can’t roll his chair up close enough to any sink in the house in order to dunk his head. So far he has not come up with a solution that would enable him to dunk his head without getting himself or his chair all wet.

He *has* discovered that with the changes they made on his chair at Shepherd – namely, the fact that they made it narrower – he can do a three-sixty in kitchen. So that is nice – he doesn’t have to roll out of the kitchen, turn around, then roll back in every time he wants to switch directions.

Speaking of discoveries, I discovered my massager that had been “relocated” during the time modifications were being made to our house. Just in time too, since I had given up and had intended to order another one the very day I came across it. Turned out that a box in the dining room/storage room that on top had things like financial statements, on the bottom had various unrelated items. Not only did I discover the massager, but I also found some story research material and a little notebook in which I had put thoughts related to the story I’ve been working on. Glad I found them! The only reason I did was I was wondering how long it would take someone to search through someone’s household box of papers . . . .

Yesterday we had another housecleaner interviewee. Before she came, Gary said, “I wonder what will be wrong with this one?” I said, “Should we ask her?” He said, “Yeah.” And then he pretended to be talking to her: “Why aren’t you going to work out?”

She was supposed to come at 1pm, and at 1:20 we figured we had another no-show. But she arrived at 1:25. She seemed nice (don’t they all), and arrived with her boyfriend who does odd-jobs around the yard – that would be handy. She is in her middle years and has lived in the area for quite some time. We’ll probably just go for her rather than interviewing several people – our careful interviews in the past haven’t done us much good!

Yesterday, Gary started doing some unsupervised transfers, not telling me when he is going to transfer from the wheelchair to the bed or vice versa, or from the wheelchair to the futon. He still wants me there when he goes from futon to chair, however.

I haven’t yet thrown him on the floor so we can practice getting him back in his chair. ;-)

One last random thought for this enty. I never posted a picture of "Nurse Mark" when I posted the other pics of the staff at Shepherd. I managed to snap a shot of him while we were on Day Program, so here it is (if you are getting this entry by email, you can see the pic on the blog at http://drpeg2003.blogspot.com/ ):