July 25, 2006

The therapy morning started out at 8a.m. with another “wet run,” the OT and PT saying they wouldn’t open their mouths unless they saw something dangerous (which turned out not to be true – one of them asked if we really wanted to keep Gary’s shoes on while he was showering (hey, give me a break – you know I don’t sleep well when I have to be somewhere early, and he needs to wear the shoes until he has actually transferred onto the shower bench (one never transfers without wearing shoes – the feet act as pivots and will have some body weight on them, so they need to be protected. Is this enough parenthetical thoughts for you?))). We speeded through the wet run, finishing it up in an hour (yes, I am being ironic). The OT next wanted Gary to practice dressing while in his wheelchair (this was his first attempt at doing so). While it is the case that if he is lying in bed, he can get his pants on the rest of the way once I have put them on over his knees, if he can learn to dress while he is in his chair, he won’t need to go back to bed after his shower in order to get dressed.

I put his t.e.d. hose on him and got the pants up to his knees (he should eventually be able to do all of the pants himself ), and he attempted to get them up the rest of the way. He alternated trying to lean way over to the side of his chair to get the pants up his thighs with trying to do a depression with his thumbs hooked inside his pants to try to slide into them. After half an hour of this, he still couldn’t get them up over his butt. The OT decided to call it quits for now. (But I guess he could still get dressed in his chair even now, with me pulling his pants up for him as he does a depression lift.)

After this he needed to get back into bed so I could dress his flap wound. We were running a little late, and while I was doing this his rec therapist came to the room. Gary said she could come in, that he was used to everyone seeing his butt. I finished what I was doing, and as he and I went through the routine of getting him back in his wheelchair, she informed him that two people had cancelled out on seeing the Braves game, and as he was second on the waiting list, he gets to go to it on Wednesday night (we didn’t ask about me – when I’d found out that the soonest they would get back is 11pm, I’d said I didn’t want to go; sorry to disappoint you, Jack Brown ;-)). Then she asked him about his rec therapy goals for Day Program. They decided on the Easystand, on getting onto the recumbent hand cycle, on billiards, and possibly on going out to a driving range for golf if Gary’s shoulders are up to it.

Next she began testing his knowledge of what had been covered in the rec classes; this time the test concerned the ADA. She asked him what areas it covered. He first said public buildings, and she quizzed him about various aspects of that, including businesses. She summarized by saying that the law says that businesses, etc., need to make their services available to him in a reasonable way, which of course can get a little gray, as one person’s interpretation of “reasonable” may not seem reasonable to another. She asked if any buildings weren’t covered, and he said privately owned buildings and those that were “mom and pop shops” (less than a certain number of employees). She told him he’d forgotten one, but he couldn’t remember. I was in the background about to burst ;-), so she let me answer: historical buildings (would sort of ruin the idea of being historical if Abe Lincoln’s cabin had ramps and so forth added to it).

The next area he mentioned as being covered by the ADA is government buildings open to the public, and she told him that was true only of state and local government buildings, not federal! (Odd!) That hadn’t been stated in our classes, and she said she’d only recently found that out.

Next he mentioned job discrimination, and they covered various aspects of that – if an employer can ask you about your disability (only the aspects of it directly pertaining to the job you will be doing), what if the workplace isn’t accessible, and so forth.

Gary was stumped on the last two, so I got to answer: transportation and telecommunications. (Gary asked me how I remembered all this, and I told him it was because I’d heard the lectures twice and I’d written about the stuff in the blog.)

The telecommunications aspect won’t apply to Gary, but for those unable to open a phone book, for example, they are entitled to free 411 (information) service. Transportation was the other area. Buses we pretty well knew about – the public system and paratransit services (first brought to our attention by Phil Zenor), but she went into rail systems as well – similar principle, though they will probably only offer a cutout area and not a tie-down system for the wheelchair. She said the main thing there was to make sure the desired stop was accessible (I didn’t think to ask – wouldn’t that be required by law?).

She then asked him how assertive he thought he was, on a scale of 0 to 10. He said “two.” She asked him what he’d do if he went to a restaurant and they said he couldn’t come in because they didn’t have the facilities for him. He said he’d tell them about the ADA, but that he wouldn’t feel comfortable insisting they accommodate him – he’d leave. She told him that opening a dialogue with them by telling them about the ADA was an assertive act, then asked him what other kinds of responses disabled people might have in that situation. He said to leave or to get angry, which is basically what she was looking for – an assertive response, a passive one, and an aggressive one. She said she understood he might not always want to make a fuss about a situation – that one had to choose one’s battles – but that if there was a place he really wanted to go to, he had the right to pursue the matter. And even if he wasn’t comfortable with being assertive, there were times he should be, or else he might miss out on something he’d enjoy. She gave the example of going to the Braves game tomorrow. If a lot of people were there and he waited for them all to get through before he made his move, he might miss the game!

She then asked him why he thought recreation, in any of its forms, was important to him now. He said he needed to stay healthy and fit with the more active forms of recreation, and that he needed to fill his life with more than just work and ICs ;-), though he considers much of his work to be recreation because he enjoys it so (except for grading tests). She made the point that those with SCIs are more susceptible to secondary health complications (urinary tract infections, pneumonia, skin problems), and that by maintaining an active lifestyle he was less likely to have these complications. She finished up by reminding him about the Bridge Program, that they’ll be asking him about his working out and his traveling plans. This reminded me to ask about how exactly the Bridge Program worked – if there was something we needed to do to start the process or if it would just happen; they’d talked to us so early in the process here, Gary and I have both forgotten the details. She said she’d find out for us. She also told us she’d be giving him a list of Home Care Instructions before he is discharged on Friday, and that he’d be getting such a list from everyone on his team.

One thing I think is a little odd – the rec therapist spent two sessions quizzing him on the material they cover but there is no such “intensive” quizzing of the medical-related stuff, though he did get a little multiple choice test to fill out.

After lunch, he had a session with the therapy tech. She laughed to herself as she read her list of things to do. He was to start with – you guessed it – pushups. One hundred. He looked at her, dazed by the news. “You can do them in sets of twenty-five,” she comforted him. “How generous,” I said as Gary just laughed in disbelief. But, as you’ve guessed again, he did them, giving mighty groans at the end of each set. After the fourth set, he remained unmoving for a rather long time, and I had to check for a pulse ;-).

Next was the “terrible threes,” and Gary told me he needed a second hit of Juven (he’d already drunk his allotted one pack for the day), so I went off to get him some Purple Power (the choice of flavors is grape or orange). On my way to get it, the case manager stopped me and told me Gary should pick up his “going home nursing supplies” and any prescriptions at the apothecary on Friday. She also said he needed to see the Day Program manager to sign paperwork agreeing to have a new case manager take over once he goes to Day Program.

I came back to find Gary doing the threes. After them he took a long swig of Juven and was glad to find he had no time to do dips. So we did balance exercises for the last five minutes, him reaching for my hand. I’m not sure the PT wanted him to do them this way, but he found he had much more control if he put a hand behind him and reached with the other.

Next he did the paperwork for Day Program, then wearily wheeled his way back to his room. He had an hour’s break before the next session, and he said he needed a nap after all the work of taking a shower and the tech’s session. So I got him settled into bed. Dietary came around; he hates missing her because when he does he gets the “non-select” menus for the next day, which have always been things he hasn’t liked. But he didn’t want to stay awake until she got to him, so he told me to choose for him. I told him I was worried I wouldn’t choose what he wanted. He mumbled, “At least I’ll know it’s healthy,” and went out like a light. I chose his food (he later approved of my choices), then worked on the blog a little. While I was doing this his nurse for the shift came to introduce herself to him but fortunately didn’t wake him when she saw me there. She asked who I was. I told her Gary was my husband. She was surprised – she said for weeks now she’s been seeing me all the time around the hospital, seemingly always there, rolling my suitcase along. She said she had no idea I was a family member – she’d thought I was in the biomed department and was wheeling my equipment around. She said she should get an honorary name tag for me. I said I’d take it ;-).

The mail also came during this nap time: Thanks to Justin Towe (my little sister’s son), Mom G (what, no picture? JUST KIDDING), Ella Schmidt and her daughters Mariana and Lucia, Marilyn Foreman, and the approximately sixteen people (not sure I counted the signatures correctly) who signed a card from Sofia University, Bulgaria, attending a conference dedicated to Pioneers of Bulgarian mathematics.

Speaking of mail, for the next little while, it should be addressed as:

Gary Gruenhage
c/o Marilyn Taylor
Shepherd Day Program
Shepherd Hospital
2020 Peachtree St. NW
Atlanta, Ga 30309

Again, the mail here isn’t delivered in the most timely manner, so you may not want to risk sending anything up much after this week.

It was soon time to wake Gary up, which I did reluctantly, to get him back in his chair for his PT session. Gary says I have to admit on the blog that I put his shoes on the wrong feet (hey, I get confused when they’re not my own feet).

The PT had the two of us practice car transfers in and out of my car. It did not go as smoothly as Gary’s Saturday session with the other PT, but at least the objective was accomplished. It’s hard to recreate being in exactly the same position, and so forth.

Also at this time, the PT suggested that when we go to buy a new car, Gary go along and try transferring in and out of various models to see what ones are easiest for him. She suggested we get a car with a low profile, which I guess means it’s slung low to the ground and so has more head room. The wisdom of this became apparent when I got his cushion beneath him (he always has to sit on that, or an equivalent, no matter what he transfers to) and his head was nearly touching the roof.

The PT told us who Gary’s PT and OT will be for day program. She has talked to them and told them what she thought the goals for Gary should be – this is so they don’t waste time doing their own evaluation. She told them she thought he should continue to work on transfers between uneven surfaces. Also, right now he is at “minimal assistance” on his various transfers, meaning others are giving between 25 and 75% assistance during them. She would like him to be at the “supervision” level (meaning I or someone else would just be standing by in case of problems – maybe still with hands on for balance, I’m not sure) for his transfers to and from the exercise mat and the bed. They both are confident he’ll accomplish this for the exercise mat, but she admitted she wasn’t sure he’d be able to reach this level for the bed by then.

We ran out of time for him to practice curbs and wheelies, but those are of secondary importance anyway, she said, since there are always ways to avoid them. But, being able to do them would increase his independence.

On our way back to his room, someone stopped us – maybe our Bridge Coordinator? (I have a hard time keeping everyone straight) – and gave Gary a packet on the Alabama Vocational Rehab department. Turns out there is an office right in our town.

We had a short time before the van from a local dealer was supposed to arrive for Gary to check out, so Gary decided it was time for a shave (FINALLY ;-)). While he did that in the other room, the assistant chaplain came in. She asked me how the TLA went, and I told her it’d taken a long time for us to get through his routine. She asked me if I was worried I wouldn’t be able to handle it, and I said “a little,” adding that I knew it would get easier as time went on and we got the routine down and he was able to take on more and more. She told me it said a lot that I was here with him, that in general (not at Shepherd) many people didn’t make it this far – they couldn’t handle dealing with their family member who’d suffered this kind of accident (reminded me of how many people with CFS are abandoned by their families). Gary wheeled in and she asked him how he felt about it almost being time for us to take on his care on our own. He said he felt ready to handle it but was a little worried it might be too much for me, though he intended to be as independent as he could be as soon as possible. She told him not to worry about me, that I was tough, that whenever she saw us in the hallways we were always smiling or laughing, so we’d obviously kept our senses of humor.

After she left, we went down to the gift shop to see if they sold fanny packs – Gary wanted something to carry his money in at the Braves game. They were out, and when I asked where around here they might sell them, they suggested the CVS drugstore. There were a few minutes to go before the van was supposed to arrive, so I dashed up the street to CVS. No fanny packs, but they did have something called a “Munchsak,” like a thermally insulated lunch sack. I would have preferred something a bit smaller, but since its handle could be threaded through Gary’s seat belt and it only cost $5, I decided to get it. (Gary thought it would work just fine.)

By the time I got back the van was there. The man showed us how the ramp was automatic: he pressed a button on a remote control and the side door opened and the ramp came out. Gary couldn’t get up it unaided, but that turned out to be due to the extra slope of where the van was parked – later, after I’d left, they moved the van to another spot, and Gary got up the ramp fine. The Transfer Seat for the driver turns ninety degrees to facilitate the transfer from wheelchair to driver’s seat (because of its cost – $2000 – it is usually not put in the passenger’s side, as the person in the wheelchair can just transfer into the rear seat). The man cautioned Gary that should he buy a van now, not to have a Transfer Seat installed in the driver’s side, because when Gary has his driver evaluation they need to clear him not only to drive, but to drive in such a seat (as opposed to his wheelchair, which confused me a little since Gary was cautioned against doing as being less safe).

I had to leave at that point – time for my first session with the personal trainer. Now you may want to skip down in the journal, because I am going to talk to myself ;-) (so you all talk amongst yourselves). I am going to record what she made me do, so that when I go home I can (hopefully) carry on with the workouts.

First I did about a ten minute warmup on the exercise bike (set to “off”). Then she had me do wall squats: I put my back to the wall, stood some distance from it, and squatted down while sticking my butt out to touch the wall; this exercise can be made harder by moving farther away from the wall. She told me to do about twenty reps, but I’m sure I did more since she was talking to me at the same time and we both lost count. Next I was to do the same movement, only this time with a large (twenty-two inch diameter) “stability ball” in my hands, which I was to swing all the way diagonally upward as I came up from the squat and diagonally downward as I went into the squat. It was hard to swing the ball and remember to “lead” the squat with my butt (let alone remember to push up through my heels, then my quads, then squeezed my glutes). She told me in general I was supposed to do ten to fifteen of those, but I counted twenty-three before she made me stop; then of course I had to swing the ball in the opposite diagonal direction, and we didn’t stop at fifteen there, either.

Next she had me stand with my legs at shoulder width, one about five inches in front of the other. I was to bend my knees so that I was doing a modified lunge. My butt was supposed to go back first, as in the squats, and my rear foot was supposed to rise up on its toes and my arms were supposed to rise forward together to act as a counterbalance – she must have mistaken me for a coordinated person. To top it off, my vertigo got in the act, adding to my difficulties of staying balanced. She had me do twenty reps. Then she had me do another twenty, this time reaching across my body with the hand that was on the same side as my leading leg in order to touch her hand. Then another twenty, reaching the opposite hand forward and pulling it back as if I were starting a lawnmower (the old-fashioned kind, of course). Then I had to switch legs and do all this again! (I had told her I had CFS and needed to get into this gradually – I shudder to think what the workout would have been like if I hadn’t told her this.) When I would do the ones where the arms were sawing back and forth, my rear knee kept turning out, and she would correct me. So there was a constant litany of : “Watch your knees! Lead with your butt!” I thought Gary would have loved being there and getting his revenge by hearing this person constantly correcting my form.

She told me that, for future reference, to make the exercise harder, I could widen my legs, and to make it even harder, add weights. I decided not to test that out now. By this time, I felt that “dead leg” lactic acid buildup and could hardly follow her into the other room for the next exercises. Fortunately, they weren’t for the legs. They were wall pushups. She had me put my hands lower than I would naturally have put them, and wider, so that my elbows were bent at a ninety degree angle when I was in the down position. She had me do twenty of them, nose to the wall if I could (which I could). Actually, those weren’t nearly as bad as those leg exercises. She told me they could be made harder by moving back farther from the wall or by lowering my arms or by pushing off from the wall at the top of each pushup, then fall back toward the wall. I was afraid of getting too sore, so I didn’t make them any harder. As it was, when I reached down to pick up my notebook from the floor after this exercise, my legs cramped. I hope I can walk tomorrow!

After that I did twenty reps of side raises using an exercise tube, standing with one foot on the tube. That can be made harder by using a thicker tube. Or by stopping the downward motion of the tube when the resistance slackens. As she pointed out, any exercise can be made harder by stopping just when resistance slackens, and starting the exertion phase again, thus not giving the muscles a chance to rest.

She also pointed out during this exercise that one should never hold one’s breath during weight-training exercise, that one breathes out on the exertion phase and in on the rest phase. I had mentioned this to Gary just weeks ago. Actually, nothing she had told me was new to me, but it’s been a long time since I’ve put it in practice.

Then it was time for stretching (thank God!). She told me that at home I should do each stretch two or three times, holding the stretch for twenty to thirty seconds, but that now we only had time for one repetition of each stretch. We did a sitting hamstring stretch, one leg on the bench; I got the feeling she would have liked me to stretch farther, but this is the kind of stretch that sets my leg symptoms off. Next we did some shoulder and back stretches that I was familiar with from my swimming days – arm across the body at shoulder height; reaching down the back with one hand; interlacing fingers behind the back and bending forward and down; arms straight out in front grasping some stationary object while sticking the butt out and flattening the back. I finished up with a quad stretch (grasping your foot behind your back and pulling), and a calf stretch (the one you always see runners do – hands on the wall in front, one leg bent forward, the other straight back, and stretch the back leg).

At this point she also mentioned that a stability ball was good for stretches – you could relax forward onto it, or lie on it on your back.

As I left, I told her I’d had fun, and I had. When I got back to Gary’s, I showed off my free T-shirt (not that I totally agree with their motto, “Choice, not chance, determines your destiny,” as to me destiny is determined by an interplay of them both) and told Gary about my workout. He said we could now commiserate and thought it pretty cool I’d been able to get through the workout. He hopes, as do I, that I will be able to handle it so I can get stronger (he has a little vested interest there ;-)).

A little later, when I was getting him blanketed for the night, his speaker phone roommate called out and asked if I was in the room (as he knows I am there much of the time). I said I was, and he asked me to come over when I got a chance. So I finished putting the covers on Gary and went over. The man’s nursing tech had forgotten to put his call button where he could reach it. I looked around for it but couldn’t see it, and I said it must not look like Gary’s. He told me it was “the red thing,” and I realized I was a little slow. The man’s injury is an incomplete one at the C-level – he has a little use of his hands and arms, but not much, so of course he wouldn’t have a call button of the type Gary had. His was a long tube that he could blow into. I hope I hid my shock and sadness at the renewed realization of what he was going through. I am so thankful Gary doesn’t have that level of injury. And I really wonder how I could borne having to take care of him to that extent. No doubt we would have had home care. But I think of all those people who probably can’t afford that.