August 3, 2006

Today Gary started out on the standing frame. He didn’t feel so great after the first few minutes, so I took him back down, but then he was fine and after I brought him up again he went for about forty-five minutes total. We played cards again – Concentration (we each won a game, evenly matched, me with my CFS brain fog and him with his SCI-induced dizziness ;-)), and War – an extremely mindless game of pure luck (we didn’t finish that one).

Next he had a session with a PT – again, a different one – and she taught him a different way to scoot in a hospital bed (shifting his body katy-corner), which worked quite well. He also worked on turning himself from lying on one side to another in a hospital bed while at the same time keeping the proper padding (which is more strict for him than for others because – let’s say it all together now – because of his flap). The problem is how to get a pillow tucked behind his back so that if he should try to roll over on his back during his sleep, his hips would still basically stay where they were, namely perpendicular to the bed so he is off his sacrum (the pillow can’t be placed ahead of time because of all the maneuvering he needs to do to get into various positions on the bed). He could get a single pillow behind him, but it wasn’t thick enough to do any good. The therapist had the idea of doubling the pillow over and taping it, but I took the pillow, doubled it over inside the pillow case, and wrapped it in the remainder of the case. The therapist applauded my creativity. Gary noted with a smile that I was highly motivated to solve this problem (since it would arise about 4am), thus implying my creativity was born of desperation. I am so insulted ;-).

Gary practiced this turning from one side to the other after the therapist left (he had a half hour before the next scheduled activity), but he couldn’t get the pillow quite right to do any good. Maybe it’ll just take more practice or maybe something like a wider pillow would work.

After this, he went off to do an IC, and then he went on a group outing to T.G.I.F’s, a restaurant just before Fresh Market. The rec therapist wanted him to go without me, saying he’d probably be surprised at how much he had depended on me when we had gone on our previous (supervised and unsupervised) outings. I had argued against that, saying I never helped him unless he asked, and he never asked unless absolutely necessary.

It was clear she didn’t want to take my word for it (or maybe it was to see how Gary would do without me – Gary said later maybe she had noted he had a protective wife and she thought he might fall apart without me ;-)), so he went off on his own. He told me later I would have been proud of him, because of the following. On the way back (and you may recall what a hard time he had on the way back from Fresh Market, his very first outing), a therapist started pushing his chair to aid him, and he said to her, “If my wife were here, she wouldn’t push my chair unless I asked her to.” She asked him if that meant he didn’t want her to push him, and he told her that he thought he could do it himself. He did need just a little pushing, but he did it mostly on his own, with rests – a vast improvement over his first outing!

When he got to steep ramp that led up to Shepherd, one of the construction workers there (they are expanding the hospital), came to help him up it. Gary told the man, thanks, but he could do it on his own, and he did (he certainly couldn’t that other time!). Later, the rec therapist who hadn’t wanted me to come complimented him, saying she wished she had videotaped that encounter because his assertive response was perfect. She asked him how he thought he’d done on an outing without his wife, and he told her his wife gave him less help than the therapists did (which we have both noticed on past outings), so I got my revenge ;-).

I returned to Shepherd at 2pm for a session with the psychologist. She asked Gary how things were going, and he said fine, that things took a long time, but we’d get faster when we got the routine down and didn’t have to think through every single step. He also brought up that he was afraid I was getting stressed out. I agreed that I had found the transition stressful, having to do essentially all the moving of his stuff, then of my stuff, then having two medical complications arise over the weekend, plus having to take over the aspects of his care he is not yet capable of doing on his own (much of which the nurses had been doing for him), plus, because the apartment isn’t accessible, having to do the majority of the domestic drudge work (which is more a psychological hang-up of mine than the actual labor involved), plus having the interrupted sleep (which I think is the major factor in making me feel stressed) – made worse by being afraid I won’t hear him if he called – plus not having the 24-hour backup of the nurses for medical situations, particularly those he is relying on me for (like, I wonder if his flap – which he cannot see in the skin check mirror – had actually shown signs of being worse Saturday night, but I had missed it until it was so obvious Sunday night).

The psychologist emphasized that things would only get better from here on, which of course, I know, and that in time I would get more comfortable with feeling he was safe on his own (which I’m not sure is a major source of stress for me, but she and Gary seemed to think it is – I mean, true, I had kept in touch with him on Saturday when I’d spent several hours of the day away from him, but that was not because I thought some dire emergency would come up – I hadn’t want him to be sitting around needing a change of clothes due to the leaking problem which had just arisen, which since he as yet can’t get out of his chair on his own and he can’t change his pants on his own means he would be uncomfortable until I got back; I didn’t think to bring this up to them). She also suggested the obvious thing that I could rest some of the time in the 9-4 schedule that I’m not required to be there. I said I knew that, but that I wanted to be there, I liked being there. I didn’t say it so explicitly to her, but watching Gary’s progress, helping with it, and sharing it and our other experiences with y’all by writing about them is what gets me through this. I told her I knew I was responsible in part for the overload, that, for instance, I was doing this thing with a personal trainer that used up time I could be resting, but that I wanted to do that too, since I had the chance, and that I had already decided I could “take whatever” until the end of Day Program, and that after that I would be able to build more rest into my schedule. As we left her office, I said to Gary, “So, you think I’m stressed out, huh?” “If you had seen your face at 2 a.m. . . .” he replied. I hardly think that is the time of day to be judging someone’s state of being, do you? I told him to not look at my face at 2 a.m., that I was trying to stay asleep then, so that at that time he should just tell me what to do and not expect a lot of conversation on my part – and certainly no perkiness!

Next he had a PT session, where he learned several things. One was that if he couldn’t find something in the backpack on the back of his chair (he was looking for his action pad, a.k.a. “chicken fat,” to put on the tire of his chair to protect him from hitting it when he does a transfer) he could do a little depression in his chair while twisting his body to the side, and from that position lean around the chair and look in his pack. I remembered he had been told that a long time ago, probably before his flap surgery, but at the time he hadn’t had the skills to do this, and since that time both he and I had forgotten about this rather obvious solution. He then did a transfer to the double bed in the gym, the therapist saying she hadn’t done anything but have her hands under his legs. Then he got his legs up on the bed on his own, and then she had him practice scooting in various directions on the bed with his legs straight out in front of him. She showed him another technique for doing this – bouncing a bit on the bed to make use of that momentum. Gary called it the trampoline effect and really got into it, which had the three of us laughing – he told us that when he was a kid, a neighbor had a trampoline, and he used to jump on it all the time. “Bet you’d be surprised if I did a flip,” he said. I agreed I most certainly would, and that they’d probably call over everyone in the gym to watch. He got really good scoots with the bouncing technique and later he used it to advantage in the hospital bed in the apartment, so it is a very useful technique.

She then had him circle sit in the middle of the bed, “circle sit” evidently being the PC term for “Indian sit” (that, or “ring sit”). She suggested that this position would be a good one for him to get into and practice balance exercises on his own, it being a “safe” position, and balancing being something major he needed to work on (she noted as he lost his balance and landed on his back on the bed). She asked him if he found the circle sit position comfortable, and he said he did. “Finally, right?” she joked (meaning that with all the things they’d made him do in his therapy, finally they had him do something he found comfortable).

To finish the session, she had him get over to the edge of the bed on his own and transfer into his chair – again, she said she hadn’t helped him with that except to provide a bit of balance – but no lift.

Next on the schedule was something called “Nursing Game,” which he wondered what it was and I said knowing them, it wasn’t going to be fun and games but something where they asked questions, and that was, in fact, what it turned out to be. Only Gary and one other person had this on their schedule, which I think made the session go quicker.

Some of the questions were as follows:

What size shoes should you buy and why (a size to a size and half larger, as your feet tend to swell (because not moving your legs tends to cause fluid to build up there), and you don’t want the shoes to put pressure on your feet).

When you go home and are looking for a primary physician, what two questions should you ask (1.If they are familiar with treating someone with an SCI and if not are they willing to learn about the condition, and 2. Is their office accessible to your particular needs).

When is the best time for bowel program (depends on the individual).

How often do you do skin checks, and what are you looking for (twice a day; changes in the skin. And, if you see redness, you stay off the area until it is no longer red; if the skin on a pressure sore has broken open, see a doctor).

Name two ways to prevent burns that those with SCIs may be especially prone to (don’t put hot food, etc., on your lap; keep the water temperature of your hot water heater at 120 degrees and make sure no hot water is dripping onto your feet from a leaky shower head).

How often should you replace your wheelchair cushion (every 2-3 years; check it once a week to make sure it is properly inflated so you don’t get skin sores)

Name foods high in fiber (whole grains, beans and peas, the “p” fruits – prunes, peaches, plums – blueberries, raspberries, blackberries, many vegetables)

You wake up with an area of redness on your sitting bone, and you need to be at work/school by 9a.m. What do you do? (You have to stay off the area, i.e., you can’t sit, so unless you can participate by staying in your bed lying down, you’re going to have to miss out).

What are the symptoms of a blood clot? (One limb swollen and/or red/and/or unusually warm compared to the other limb.)

You start leaking during the night, but your IC volumes are low during the day. What do you do? (Drink most of your liquids (and have your liquidy foods) early in the day, and restrict the amount taken in after 6pm.)

What can you do to prevent pneumonia? (Stay healthy by eating right and exercising, etc.; dress for the weather; stay away from sick people and smokers and don’t smoke yourself; cough out any secretions (aided by someone else if necessary); get pneumonia and flu shots)

What are natural aids for constipation? (Fiber, fluids)

So, class, how did you do? :-)

That was the end of the therapy day. I already forget if Gary came back by bus and I took the car, or if I drove him back, but I do know I got things ready for our meals and then left for another session with my personal trainer. After I had warmed up on the bike, she put ankle straps on me and attached them to “the lightest weight,” which didn’t feel very light to me (!) and I found out later was twenty pounds. I did exercises to strengthen the muscles in the upper front of the leg. First I just lifted up at one knee; then I lifted up slightly at the knee, kept the knee in place, and flexed and extended the lower leg; then I lifted the entire leg up and down from that extended position, working the quad muscles. The legs were alternated, 15 reps of each exercise on each side.

Next I lay on my back on a bench and did a bench press motion, only my trainer took the place of the barbell. She pushed against my hands on the way up, and on the way down I was also supposed to press up against her hands, resisting her as she pushed my hands down (I can tell you, I was sore from this the next day!).

Next she looped an exercise tube around my waist (protecting my waist with a barbell cover), and I had to walk around the room as she pulled back against me. I’m not absolutely sure why we were doing this , but I felt it in my shins and glutes, and so forth. I felt like a horse in harness ;-).

We finished up with a balance exercise. I stood on a pad, closed my eyes, first lifted a leg at the knee, then after awhile, extended the leg forward, toe pointed, then after awhile, extended it back, toe pointed, then did the same with the other leg. (I forgot to ask how long we did this.) She kept a hand on my arm to aid my balance.

We then finished with stretching. After that, I went back to the apartment and Gary and I went through our routine. Gary told me he had let the math people know that we weren’t going to come home for the trial run this weekend. I had told him before I left for the trainer that in the short run, I would rather just stay here and rest up for next week but if he thought it would be better in the long run that we go home and see if anything came up that we needed to work on back here next week, that that was okay with me. He decided he’d rather just stay here and rest too – we’re both rather pooped!

August 4, 2006

Today started with a “group push” to Chick-Fil-A (I just realized at that time that I’ve been misspelling the restaurant’s name all this time – shows you how aware of this restaurant chain I was before this) – the therapists must have a thing for this place, as this is the third time Gary has been on an outing to it. I think his time could have been spent more profitably doing something else, but they didn’t ask my opinion ;-).

On the way back, Gary and another Day Program person, a person we’ve seen around here for as long as we can remember, were split off from the others to practice curbs and wheelies. The other guy, a young man I would guess in his twenties, was fairly proficient – he could hold his wheelies effortlessly, and he made getting up the curb using the wheelie technique look easy, having the timing down perfectly on the way up – though a couple of times he came out of the wheelie too soon in going down the curb. As others had, he told Gary he needed to be more zen when he tried to hold the wheelie position, to give it a light touch, using only the palms of his hands on the handrail; Gary tends to grip the handrail tightly, which they say actually makes it harder to make the small corrections needed to keep in balance. On the curbs, Gary still needs lots of practice – he tends to pop the wheelie too soon – which means he has to take two strokes to get up the curb – and too high, which tilts him too far back – and since he can’t have the tip bars on to take the curbs, this is not a good position to be in! Again, he needs to be more relaxed when he practices curbs, they said (easy to say, hard to do), saying that it looks like he goes into “freak-out syndrome” whenever he gets close to the curb. Gary told me afterward that the four or five times he got to practice the curbs at this session really didn’t help much, adding that he needed to practice them about forty or fifty times.

They did show me how I could help him practice if we want to do it on our own – put the gait belt around his axle and hold onto it from behind him, pulling up on the belt if he overbalances, plus keep one hand in front of his chest so he doesn’t fall forward in the chair should he come down too fast. I’m not absolutely sure we’ll practice this on our own – my fear being I don’t want to be responsible for him falling on the back of his head. If he wants to practice it with me, I’m going to try to persuade him to wear a helmet until he gets it down (he may not need much persuading). We’re thinking he probably won’t need this skill for awhile, as we don’t think our town has many curbs to contend with, and there are usually ways to avoid them; if worse came to worse, he could always back down them, which he can do without help – it’s just that that takes time, and if one is trying to cross in a pedestrian walkway at a light, the light may change too quickly.

The session finished up with the other guy going down a steep ramp while in the wheelie position (with the help of the therapist). I believe I mentioned this before, but the purpose of staying in the wheelie position down a steep ramp is that if one goes down it otherwise, one’s weight is forward, and if there is some unevenness at the bottom of the ramp, one’s chair could tip over forward since the small front wheels would hit it first.

One change that was made as a result of this wheelie session was that Gary’s tip bars were raised to a less conservative height. The other guy noticed that when Gary had tried to take his nemesis curb cut across from the CVS store, his tip bars had dragged, and that may be what has always caused Gary to veer to the left there, as the curb cut is uneven and the left tip bar probably is hitting first, causing him to pivot on it.

After this session, there was another group weight-training session; as before, I held Gary’s shoulders for some of the two-handed exercises, though he always tries to do them by himself first (which at one point, resulted in him saying, “I can do this – oops!” and I caught him as he went forward, having lost his balance). They did three sets of twenty of shoulder shrugs, lawn mowers, bicep curls, triceps extensions, side raises, and wrist curls; Gary did dips in his chair when they did bent rows.

Then we were done with therapy for the week! Yes! (Well, not quite, as nearly everything is still therapy.) As we were about to leave, Gary’s head nurse from his inpatient team (the one in the previously posted picture) came up and gave us goodbye hugs, saying she was going on vacation and wouldn’t see us next week. We told her how much we appreciated her help – she was really great. Earlier in the day, one of his inpatient nursing techs had come up from behind me and given me a hug, and then hugged Gary, so that was really sweet.

We then left in my car. We decided after his transfer out of the car at the apartment that maybe he should ask them to help us with those some more; while we can do them, the transfer out is still time-consuming and awkward (I had to grab him as he nearly slid off the transfer board, him having gone too far forward in his hop); maybe these new-to-us therapists would have more pointers for Gary.

Inside the apartment, as Gary savored not having any formal therapy until Monday, he declared as I brought him his lunch, “Now you can spend a relaxing afternoon waiting on me.” I gave him a look. After lunch, he decided it was time for a nap. After helping him transfer into his bed, I decided this would be a good time for me to take a nap too. Gary said later that he was out as soon as his head hit the pillow; it didn’t take me much longer. I slept for an hour and woke up feeling insane ;-) (lots of times I feel terrible for a short time after taking a nap); Gary slept for another half hour. When he decided to get up, instead of helping him as I have been doing in the mornings in the interest of time, I said, “So, Gruenhage, how much of this are you going to do yourself?” (After all, this was some of what he’d been practicing with the therapists all week.) He looked at me and said, “Well, I’m not going to bed to sleep, so I can’t use that as an excuse.” He thought some more, then said, “They didn’t work me hard, so I can’t use that as an excuse.” He thought even harder, then said with a silly smile, “Because I don’t want to?” I was about to say that if he really didn’t, I would help, but he started maneuvering himself on the bed so I kept my mouth shut. He reached behind him a moment, and then said with an even sillier grin, “Because I can’t find the clicker?” I reached behind him, found the bed controls, and handed them to him. His last excuse shot down, he worked at getting himself to the edge of the bed, and then we did the transfer to his chair.

We piddled around awhile, me working on the blog, he finding us some outing to do over the weekend (we decided on seeing the Prairie Home Companion movie on Sunday). At six, I had a massage from the guy who has come over previously. After that, it was time for our usual nightly routine, and then glorious bed.

August 5, 2006

I managed not to wake up for Gary’s 2am IC (yea!), but I did wake up at 5:30 for some odd reason, and didn’t really go back to sleep after that (boo!). But at least this is a sign (I hope, I hope) that I am getting used to this schedule. I’m sure knowing that Gary didn’t have to be in therapy at 9 am helped my sleep. At 6:30 he called me to supervise his turn, since instead of getting up he wanted to sleep in a little, and thus needed to change his position to lie on his other side. His final position wasn’t textbook perfect, but it may be all right for him to stay in for an hour or so – we’ll just have to keep an eye on his skin, as that is the test.

I got up at eight and started catching up on the blog. About 8:45, Gary wanted to get up; I got his t.e.d. hose on him (I had a therapist give me a tip on that, but it doesn’t seem to always work), he got his shirt on, and we went through his stretching. But then since we didn’t have to be anywhere, I quelled the urge to save myself some time (in the short run) and after I took the bed rails off I suggested (demanded? ;-)) that, firstly, he maneuver himself over to the edge of the bed by himself, if possible, and secondly, that he try to get his pants on after he was in his chair.

It took some thinking on our parts, but the only problem we ran into with him getting himself situated upright on the edge of the bed was that the hospital bed has these tubes where the rails go in and they seem to be placed just where his feet always go down, so I have to guide his feet past them so he doesn’t cut himself on them.

Once in the chair, he applied some of the tips he learned this week in dressing. He got the first part great – he got his shoes off (which I’d put on him for the transfer), then got the legs of his pants up over his knees (after he made a small correction, deciding he would not make a new fashion statement by putting both of his legs in one pant leg), and he also got his shoes back on (while a leg is still crossed over the other one after putting the pants leg on, a shoe goes on the foot that is up, rather than waiting to put the shoes on at the end, which would mean getting each leg up again). Getting his pants up his thighs was done with some depression scoots and some leaning over in his wheelchair onto another chair and tugging his pants up his hips – this part was where I had to supervise, because on the scooting he goes far forward in the chair and then leans back and we want to make sure he doesn’t slide off the chair; he is probably safe with the leaning, but better safe than sorry. The problem was the last little part – he couldn’t quite get the pants up over his booty. We called it quits after half an hour at the dressing task, and he depressed up in the chair while I pulled his pants up the rest of the way.

I then ran off to the chiropractor and from there to a place down the block where the chiropractor had said I could get my glasses adjusted (I had used a temple from an old pair of glasses (same style as my present ones) to replace the temple I broke, but the adjustment was not quite right, and I’d been seeing cockeyed all week (no remarks from the peanut gallery, please)). I came back to the apartment, got Gary’s pizza ready, wrote in the blog, and then went off for another session with the personal trainer.

Which I am now back from, but I think I will post what I have now before continuing!