July 29, 2006 segueing into July 30

Our morning routine was about the same as last week’s, except we put off doing the bath until evening since that is what we’ll be doing for day program in order to save some time in the morning. We finished just in time for me give Gary a kiss and run off to my chiropractor appointment at 11:45. After that I went to the hospital to a) ask them what to do about the bladder situation, and b) collect Gary’s second load of stuff. Concerning a), they told me that because Gary had been discharged as an inpatient, our options were to go to the Piedmont emergency room or to try the outpatient services number, which they gave me. (Later, when Gary called the number, the only item on the recorded menu that seemed to pertain to the situation at hand was to call the urology emergency number; since he doesn’t feel bad and isn’t running a fever and has no other symptoms of a urinary tract infection, he decided to wait and see what develops.)

So I collected Gary’s stuff, went back to the apartment, unloaded a few of the items we’d decided we needed, gave him the report concerning a), then gave him another kiss (I decided we both needed lots of those today) and went off to Fresh Market. I swooped down the aisles, sacrificing my principles for convenience ;-) by buying pre-cooked items for him at the deli in addition to the fruits and vegetables (including a case of zukes for me). Gary was delighted with my choices and said that though he’d learned which items to choose from the hospital menus and which to avoid, he was really looking forward to having some real food again.

After I dashed in with the groceries and gave Gary another kiss, it was time to head out for my next session with my personal trainer. So what comes next is another accounting of my workout, be forewarned.

I started out with ten minutes on the bike as before, then we moved into the main workout. For the first exercise, she stretched an exercise tube between the posts of a squat bench at mid-shin level, and I did “step-overs,” first stepping over the tube with one leg, then stepping back with it; the tendency, she said, was to let the knee turn out during this, but the correct form was to keep it pointed straight ahead. She said my form was good. My hip flexors burned after about six reps. She had me do twenty (mean person ;-)), first with the right leg, then the left. Then another fifteen with the right leg and then the left.

Next I was to have my back against the wall and be in a seated position (the deeper you squat, the more difficult the exercise). She handed me a weight (oh, shoot – I forgot to write down how heavy it was), and the exercise was to lift the weight from a downward of about forty-five degrees to over my head until it touched the wall – so, a type of front raise, being careful not to arch my back. I did fifteen of those. (At this point she mentioned that wall squats – by which she meant simply holding the position I was in (without using the weight) for an increasingly longer amount of time– was a very good strength builder.)

Next I did a type of lunge: I started with my feet together, then took a small step forward and bent both knees in a lunge, similar to what I had done the first day, only without the arm movements and with the lunge being dynamic instead of “in place.” She said my form was good – I found it much easier to maintain my form than during the exercise on that first day when I’d had to coordinate arms with legs. I did 15 reps stepping forward with the right leg, then fifteen with the left.

Next I repeated the “wall squat with weight” exercise, twenty reps. Then I repeated the lunges. She said that that exercise could be made harder by “sitting back” farther during it, and/or bending the legs more, as long as the knees don’t go past the toes. She again commented my form was good, and I believe I can thank all my years of standing in front of a mirror watching my form while I did weights for that.

Next she had me sit on a stability ball and simply lift my leg at the knee, the goal being to keep my balance on the ball, having to recruit some core muscles for that. It was easier on my left leg than on my right, for some reason, so to make the exercise harder, I lifted my leg out straight. She said to make the exercise even harder, one could do bicep curls at the same time.

We finished up the strength-training aspect of the workout with angled pushups – she put a bar on the squat rack and I did twenty pushups leaning on that. I almost told her about Gary’s one hundred pushups, but thought better of it – wouldn’t want to put ideas in her head! I told her I found those relatively easy, and maybe we could have put the bar down lower. She said she hadn’t been worried about the strength issue with me but with how the exercise would affect my back, so she had been having me do a progression – first wall pushups, now these, next time maybe knee pushups on the floor. I should have kept my mouth shut ;-)

We next did stretching, she leading me through them. First a “plié” stretch, where one was supposed to lean to each side while in the plié. I’m glad I couldn’t see myself in a mirror and I’m glad my former-ballet-dancer little sister couldn’t see me. Next I did a chest stretch, one arm angled on the wall at a ninety degree angle. Then a couple towel stretches: stand on a towel with one foot and pull on it while using the other arm to reach across the head and stretch the neck; lie down on the floor and loop the towel around the foot to do hamstring and calf stretches. Then I hugged my knees to my chest, then from that position I put arms out on the floor at shoulder level and twisted to one side then the other. Then I rolled over and arched my back up like a cat, then went into yoga’s child’s pose. Then I stood and did a couple arm stretches, first pulling one arm across the body, then reaching down the back with the hand.

I thanked her for the workout. She told me she’d been easy on me today because on Monday I’m supposed to meet with another trainer, the one with a background in physical therapy, and he would really work me. Uh-oh.

I had seen a pharmacy across the street from the workout place, so went there to see if they had the supplies Gary had forgotten to get at the Shepherd apothecary. They didn’t, but they sent me to a nearby pharmacy that carried some medical supplies, and I was able to get everything there, so that worked out great.

I called Gary once I got to the hotel – which I hadn’t checked out from yet – and he said he was doing fine, that he’d had a nice conversation with Norma. I then made up for the fact that my workout was supposed to have been an easy one: since I had to make at least a half-dozen trips of going up and down the stairs carrying things, I’m sure that counts as a leg workout in itself.

After checking out, I had one more grocery item to get – some laundry detergent I can tolerate – so I got that at the Publix close to my hotel. I realized after I got to the apartment that I should have gotten more, given all the times we are running the washer to do the towels and washcloths. Unfortunately, the Publix close to the apartment doesn’t carry any “natural” washing stuff. I can do with just baking soda in the wash, but Gary has the psychological need for something that suds ;-).

I made it back to the apartment by six, brought in some stuff from he car, then made my dinner and turned on the oven so Gary could warm up his Italian sandwich from Fresh Market in it. While he finished dinner I tried to organize some of our stuff (I’m sure Debra is going to think the place is in chaos when she comes tomorrow ;-)). I remembered some more things I needed from the car, and went to get them. There was a fantastic lightning display going on. Two men were sitting out watching it. One was in a wheelchair. He looks to be in his early twenties and is in the Day Program (Gary had talked to him earlier and found out he’d started it last Wednesday). The other man I assume is his father. As I passed by, I greeted them, and they asked me if I could take them grocery shopping tomorrow. My stomach dropped. I made some excuse about having company tomorrow and not having the time. When I got back inside the apartment, I told Gary about it, and told him I felt really bad because while I know they are in a tough situation themselves, I just can’t help them out – I can’t take on any more (I meant psychologically, if not physically). I was upset; Gary said they’d find someone else and that he understood, that he was amazed at all I’d been able to do for him.

I don’t know what to say when I next run into these people if they ask again. I suppose I should try to be somewhat forthright, but my inclination is to park around the side of the building, go out the back of our apartment, and avoid running into them.

After Gary was done eating, about 7:15, we got him in to bed so we could give could do the bath and the rest of our regular routine. We finished about nine. He had decided to do an IC about 10:30, and I would need to help him prone after that. He dozed, but I stayed awake and worked on the blog – I figured it would be harder to go back to sleep if I dozed, then helped him prone, then went back to bed.

By the time we got him proned, it was close to 11:30. I took a five minute hot bath and went to bed. I fell asleep quickly, fortunately. Gary was going to try to delay some of his program in the morning, instead of doing a practice run for Day Program, as we’d originally planned. By delaying, his intention was I would get more sleep. I was awakened by his light at 6:15am. I peeked out and watched him a short time, but he had gotten himself turned and seemed to be doing his IC fine on his own, so I went back to bed and dozed/meditated/slept until about eight. He was sleeping lightly, and when I woke him he said he wanted to rest some more, so he did that and I worked on the blog. When he was ready, we started in with the morning routine. We are going to time it, so we know how long we need to allow in the morning to get him to day program at 9. We are going to skip his morning stretching routine during the weekdays these next two weeks, figuring they’ll do that sometime at day program.

. . . We have figured out it will take us about forty-minutes to get him dressed and into the wheelchair. About thirty-five minutes of that was spent in getting his t.e.d. hose on. And that’s not all that much of an exaggeration! I told him they should have given me classes in that.

He also figured out we’ll need to get started at six in order for him to catch the bus at 8:20. We decided to have him take the bus because with us having to transfer him into the car, we’d have to start that about 8:30 anyway, and this will be simpler on the both of us. I could ride in the bus too, but I’m going to take the car so I won’t feel stuck over there.

Debra Talley, fellow SteeleWatcher and RSFic’er came at noon. She and I went to Fresh Market to pick up something for her and Gary to eat. (She got a small uncooked pepperoni pizza .I picked up one of those for Gary for some other meal but had the Fresh Market person make up some salmon and tuna and California roll sushi for Gary. This was much less work than having Gary either push his way up the street to the restaurants, for which he would need help from me, or go through the process of breaking down his wheelchair, loading it into the car, transferring him into the car, driving about two minutes, putting together his wheelchair, transferring him out of the car, then going through the whole process again after we ate. That process will go quicker once he gets the car transfers down really well, but as with the other stuff, it’s going to take more practice.)

We returned to the apartment and had a nice conversation and a nice meal, Gary even getting a slice of the key lime pie that Debra had also bought. Then we watched Debra’s “The Matador” DVD, which we really enjoyed seeing again and she enjoyed seeing for the third time ;-). After that, Debra showed us pictures that had been taken during her L.A. interview – she is going to be in one of the extra segments (the one about the fans) on the soon-go-be released fourth-and-fifth season Remington Steele DVD. She also showed us the wonderful watercolors she’s painted – she only discovered fairly recently that she could paint! Then we said our goodbyes. I was very happy that we were able to get together with her while we were in Atlanta – this was the last chance we would have to do so before our return home.

Both Gary and I were then ready for the nap, so we got him transferred into his bed, and now I’m headed off to my own.

All for now. ;-)

July 28, 2006

You may recall (if you have a long memory ;-)) that when we took the “Been There Done That” class, the Shepherd alum had said that after leaving the hospital one had to find the new normal. Gary dryly remarked this evening, “I hope this isn’t it.” I thoroughly agree.

It was a tough day. We had planned to start the discharge process about 9am, but when I got to the hospital, Gary was still in bed. I thought maybe the nurses had left his bed bath for last since the others in his room would have to be gotten ready for their therapy sessions. But that wasn’t it. When they’d turned him from his prone position at 6:30, he’d had a large, very red spot on his thigh, and at first they thought it signified a first stage pressure sore, that he’d somehow put pressure on that area during the prone. But then they noticed a large bump there, about three inches in diameter, and the nurse thought it might be a bug bite . By the time I got there, the area was only slightly pink, and in feeling the area, I wondered if it could be a torn muscle (not that I know what one feels like – that just popped into my head). Gary’s doctor came in and examined it but didn’t offer an opinion, just told us to put ice on it. He was going to have an ultrasound done on it, but the person who does the ultrasounds for Shepherd isn’t qualified to do it for muscles. Then we heard they were thinking of doing an MRI on it, but those people (from Piedmont hospital, I think) were booked for the morning. Finally the resident who works with Gary’s doctor told Gary they thought it was a torn muscle and to basically ignore it unless it got worse. I asked for clarification, and the doctor said that at this point Gary wouldn’t need to modify any of his activities or therapies. I asked if Gary’s occasional leg spasms might have caused it, but they didn’t think his spasms were strong enough to have done it. So basically it is a mystery why this has happened.

That set us back about an hour and a half – not that we had big plans for the day, but I wanted to get settled into our apartment as soon as possible. The next glitch was the right brake on Gary’s loaner chair. Somehow overnight it had tightened so much that Gary couldn’t get it locked or unlocked without practically giving himself a hernia. Plus, in the locked position, the wheels still easily slipped along the floor. I went to the room where Gary had had his seating clinic, hoping to find our supplier there. He wasn’t, but I got his phone number, and Gary left him a message about the brake, and also about the call we’d received on our home phone about equipment being delivered, including a hoyer, which we didn’t need. Soon after, we transferred Gary to his chair, and during his weight shift a half hour later, his wheel nearly fell off! His nursing tech for the day happened by at this time, and she tilted the chair (Gary still in it) while I pushed the wheel in. These incidents did not give us supreme confidence in this chair. The next thing that happened was a bladder accident, which had never happened before (it happened a couple more times over the next eighteen hours, so now we have to have him checked for a bladder infection). We were like, why are all of these things happening today? I told Gary we should transfer him back into bed and then transfer him out again on the other side, because the side he’d gotten up on was obviously the wrong one.

Our supplier arrived at about this time, and he and the nurse did a two-person transfer on Gary to get him into his old chair. The supplier worked on the loaner chair, the nurse cleaned the seat cushion and cover, and Gary and I took care of him.

All throughout this I had been packing up Gary’s room; I know he would have liked to help, but there really wasn’t much he could do except pack his multitude of pillows into plastic bags (and talk to his roommate, who is obviously going to miss us and wanted to talk a lot! Other staff people came by to say goodbye to Gary as well – he is well-regarded around here). Gary went off to lunch in the cafeteria and I continued with the room. By the time he returned, I had almost finished – I ended up filling two hospital carts, one with the must-haves, one with stuff we could come back and get tomorrow, if need be (I had planned on returning for the second load right away, but other things intervened). Gary went down to the apothecary to pick up his supplies (unfortunately we found out later he forgot to get the ones that hadn’t been on the list given to him by Shepherd – they were necessities, but insurance wouldn’t pay for them, so they hadn’t been put on the list; we were able to improvise for the time being), while I went and got the car and Gary’s head nurse rolled down our cart of essentials. Then it was time to help Gary transfer into the car – we didn’t want to fill the car with other stuff until we could make sure his chair fit in. Naturally, because other people were watching, the transfer took a little longer than our trial runs, but it went fairly smoothly. Then came the trick of packing the stuff in the car while still allowing me to see out the rear window. With a lot of pushing and shoving (of the stuff in the car, not each other ;-)), the nurse and I accomplished this goal. The nurse, who has been great throughout Gary’s stay, gave us big hugs :-) – even though we’d probably at the latest see her when we came back for Day Program on Monday, since Gary will still go to the third-floor gym for it, only now he’ll be on the side opposite where he has been up to now.

It was now about two-thirty. Gary took his first car ride since the accident – we went across the street! The apartment we have is that close to Shepherd, which is nice. I put the wheels, arm rests, and tip bars back on his wheelchair and angled it next to him in preparation for the transfer, but we noticed the tires were slipping badly. Somehow, the brake (wheel lock, actually), had angled itself to the side and so was no longer in position to grip the tire. I wasn’t strong enough to realign it. Fortunately, we got help from the housing guy, who was right there, having just finished checking out our apartment to make sure the last people had cleaned it up properly. (Shepherd only leases four apartments in this complex; they own another building a few blocks away in which most of the Day Program people live.) The housing guy realigned the brake, showing us how to do it should it come out of place again – I hope we remember. This took a half hour, and Gary was getting hot in the car, even with the AC going, so I got him in the apartment ASAP. We were disappointed with how the place was stocked. At the hospital there are tons of towels and washcloths, etc., but here there weren’t enough to hold us through one day. We asked for more of those, as well as blankets. The housing guy wasn’t all that gracious about our requests, IMHO. Perhaps he felt he had done his duty by us (and more, with helping us out with the wheelchair), or perhaps he had a lot more to get done that day and we were delaying him. Anyway, he brought back a few more washcloths and a couple of thin blankets. Fortunately I would have my bed warmer and comforter, once I got them from the hotel, but as for washcloths and towels, it looks like we are going to be running the washing machine a lot – good thing there is one right in the apartment.

After I got Gary’s stuff unloaded, it was nearly time for the massage I had previously arranged for – my reward! It was the same guy I had used the previous Sunday, and he came to the apartment. After the massage, I decided to go get my stuff from the hotel, rather than go back to Shepherd for the second load of Gary’s stuff. While in the hotel room packing up what I would need for sleeping and cooking, Gary called with another personal emergency, so I threw my stuff in the car as quickly as I could and came back and took care of that.

He had ordered take-out pizza for dinner, and I had had my rice going in my slow-cooker in the hotel, so at least we didn’t have to worry about that meal (I forewent making zukes). By now it was almost 7:30, time to get him into the bed and do our evening routine. I was tired and seemed to be moving in slow motion, plus there was the added complication of us figuring out how for him to maneuver in the bed, as it is much smaller that the hospital bed he has been in. At one point Gary started crying, saying he was mostly okay with “this” (meaning what life after his accident entails), but that he hated seeing me run myself ragged because of him. So then we both cried some and held each other in a hug. He promised that things would get better, and I told him I knew they would. Then we got on with the routine. We finished after nine, and I still had to go to the grocery store to get him breakfast supplies. I also picked up paper towels and soap – things not supplied in the apartment. I decided we both cheering up, so I brought back a bouquet of pretty flowers as well. But I had to save my surprise, as he was fast asleep by the time I got back at 10. I knew he had to do an IC at 11, after which I would need to help him get proned, so I didn’t bother to lie down. Close to 11 I got a worried call from him – he hadn’t been aware I had returned. He did his IC, we got him positioned, and then it was time for bed (after we said some mushy stuff
;-) and joked that maybe we should try to get him checked back into the hospital). It was close to midnight. I needed a relaxing bath, so I didn’t get into bed until about 12:30. I woke several times during the night, thinking he had called my name – his hospital bed was out in the living room area, and I was in the small bedroom next to it. I woke again at about 5:15 and couldn’t go back to sleep – I knew his alarm would go off at 6 for an IC, and the possibility he would need me then didn’t allow me to settle back down – so I meditated. He did need me at six; we finished with that at about seven, I put a load of laundry in, and then I wrote some of this. Now I am going to get back into bed and see if I can sleep a little!

Oh, and his leg is looking better, so perhaps we at least won’t have to worry about that.

Thanks to Janet Rogers for sending us the Plainsman article and the editorial. I forwarded it to those who get this report by email.

July 27, 2006

I have put the pictures of Gary’s Shepherd graduation up on the blog. For those of you who receive these journal entries by email, go to http://drpeg2003.blogspot.com/ and scroll down to view the pictures.

I asked Gary how the Braves game went, and he said it was a good game, lots of home runs, and the Braves had won 6-5. I told him that was not blog material ;-). So he told me that there was an area of the stadium set up where seats could be removed to accomodate wheelchairs, and that’s where they’d sat. He’d found out that one member of their group, a man who works at Shepherd and is paraplegic, travels all around the world to fish at different locations, so Gary is going to get together with him next week to ask him questions about accessibility in different locations around the world, in this way hoping to get some useful information for future travel to math conferences.

Gary also said he was supposed to get his own hotdog, but a therapist volunteered to get him one, so he didn’t refuse. She brought it loaded with onions and catsup, and he got that all over his shirt.

Sorry, that’s all I could get out of him about his outing :-)

Gary’s last day in inpatient therapy was pretty light: an OT session, a seating clinic, and a PT session. The OT started her session with him by going through the ASIA test with him again, the one where they test him for sensation and proprioception. Her results showed that his ability to feel sensations stopped (or in certain areas, lessened) higher on his chest than they’d found when he first entered Shepherd, and that as a result he would be classified as a T2 not a T4 as they’d told him at the beginning. But as she pointed out, functionally speaking there’s not all that much difference between those designations.

At the start of this session with the OT, Gary had asked to try to transfer by himself to the mat. So the OT and I stood at ready – me in front of him, her behind – while he attempted it. Unfortunately, he landed on the edge of the mat and lost his balance backwards, which under other circumstances might have caused his butt (and therefore him) to slip off the mat. Both the OT and I grabbed him, so there was no mishap, but he can’t be “cleared” to do such transfers on his own yet. He tried again on the transfer on the way back, the OT hanging onto his pants just in case. She said she’d had to give him a little guidance during the transfer to make sure he landed in the right place. He was disappointed – he was certain he could do the mat on his own now; he hopes it was only due to nervousness that he still couldn’t do it today. I reminded him that he still has the two weeks of day program coming up to practice this, so hopefully by the time he goes home he’ll be able to do at least this type of transfer independently.

After the OT session, he went to “seating clinic” and got fitted for his loaner wheelchair (we don’t know how long it will be before the one he ordered will be delivered). This chair is the same model as the one he is getting, though slightly too wide for him. Gary found it more comfortable than the Shepherd chair he’s been in – mostly because the back is lower so it gives him more mobility, and also because the chair had less “dump” than the other one, enabling him to lift both hands up and even bring them both forward a little while still maintaining his balance, which he can’t do in the other chair. So he will most likely use this chair during day program unless some other difficulties with it arise.

The seating clinic guy went through with us how to inflate the cushion of the chair and how to test it to see that there is the right amount of air in it when Gary sits on it. The procedure was a little different than what we’d been told by the PT – easier, fortunately.

Gary wheeled back to his room in his loaner chair, and I brought the Shepherd chair along in case he runs into some problem with the loaner. Back in his room, he said he needed a nap – he hadn’t gotten back from the Braves game until about 11, and by the time he’d done his IC and the nurses had proned him it was midnight, and at four-thirty a.m. various routines for his roommates had begun, so as a result of all this he hadn’t gotten much sleep. Fortunately his session with the PT wasn’t for another three hours, so he and I did a transfer to his bed and got him settled in. His PT dropped by while he was asleep and told me he and I were officially cleared to do car transfers together. We’re thinking that for Day Program (starting Monday!) I may drive him over instead of us taking the Shepherd bus. That way not only will we get more practice at car transfers but we’ll have about another half hour of time in the morning to get him ready – and as we found, every second we can squeeze out will help!

Noonish, he did another IC and ate his lunch in bed, then relaxed a while longer before it was time to get up (he hasn’t had the luxury of relaxing like that in quite a while!). As we prepared for his transfer out of bed, I noticed he hadn’t re-tightened his binder yet, so I joked, “All passengers, fasten your gut belts!”

When I pulled his loaner chair over to the bed and angled it as we had the other one, we noticed he was going to have to transfer a farther distance than with the other chair – this chair has a wheel-to-wheel width about an inch and a half wider than the other one, and, additionally, there seemed to be something about the chair’s construction that prevented it from getting as close to the bed as we expected it to. Another thing we discovered to our dismay was that the tires of the loaner chair seemed to slip on the floor (the wheel locks were on, of course, but this still happened), and since Gary has one hand on the chair when he transfers, it often happens that he pushes against the chair slightly, which in this case would push the chair away as he was trying to transfer onto it. Because of these various factors, I helped with the transfer from in front of him instead of to his rear like I normally do (because if I’m in front it would be easier to catch him if he fell forward), and I put my hands under his sitting bones instead of on his hips. Plus, because of the slipping tires, I hooked a leg around a tire while kneeling on the other leg. (My chiropractor would not have approved of the position I found myself in ;-)) Between Gary giving a super effort to make the distance and me giving him extra help to counteract the various factors, we almost went too far the other way and I had to pull him back slightly while he was in midair to make sure he didn’t overshoot his mark!

So when we went to the exercise mat in the gym for the PT session, we mentioned to the PT these difficulties with transferring to this chair. She showed me how I could do the transfer standing to his rear, as I prefer, while still preventing the tires from slipping by keeping one foot on the handrail of the wheel (the handrail being where Gary puts his hands to push the wheels). She said that the different kind of brakes he has on this chair (“scissor brakes”) didn’t grip the wheels as firmly as the other kind, and if he was going to have this kind on his own chair (which he plans to, as they have the advantage of folding back out of the way), that someone could chisel notches onto the surface of the brakes so that they would grip the wheel better.

So then he and I did the transfer to the exercise mat. For some strange reason, when we set up for it, we didn’t notice any extra distance from chair to mat. Don’t ask us to explain this ;-). Anyway, the transfer went fine. I commented to Gary, “Of course it did. One of your therapists was watching.” I’d meant it as a joke, but he said there was truth in it – that when the therapists were there he had more confidence.

Once he was on the mat, she redid the ASIA test in the area near his right armpit. She too found that he had little or no sensation there (making him a “T2"), whereas when he first came they had recorded that area as having normal sensitivity. But Gary claimed he’d known essentially ever since the accident that that area had been affected. So the PT thought that maybe whoever had first done his testing had been extra lenient with him at the time.

After the ASIA, he practiced wheelies, the PT keeping the gait belt around his wheel axle and her hands lightly on his chair. Gary said that getting up into the wheelie from a stopped position was easier in the loaner chair, but I noticed he had a harder time when it came to actually popping the wheelie while moving. They next practiced taking curbs, and it seemed about the same as before, the PT giving him significant help. It’s fine with me that he is nowhere near being able to do these on his own ;-)

The PT interrupted her practice with Gary when some old hands at this paraplegia stuff set about demonstrating to some of the other patients floor transfers and wheelchair uprighting. Gary won’t even begin to practice these skills until his flap restrictions are lifted – and he would have to get a heck of a lot more flexible! – but the PT wanted him to see what is involved. The men demonstrating these maneuvers practically bent themselves in half in getting from a “seated on the floor” position back into their chair. Their moves looked smooth and easy; one had had lots of practice, having been a paraplegic since the late eighties, the other had arms and shoulders about the size of tree trunks. Gary’s got a little ways to go in that regard ;-)

The wheelchair uprighting, Gary’s PT explained, came in useful when someone’s chair had tipped over backwards and one needed to get back into the chair oneself. The demonstrator went through the maneuver, and it was obvious it would require a lot of flexibility and strength. I commented to the PT that I wondered how practicable this skill was – given how Gary had felt right after tipping over backwards, I don’t think he would have attempted getting himself back into his chair no matter how flexible and strong he had become. The PT gave me no argument.

And on this note, Gary ended his therapy sessions as an inpatient (tomorrow he is discharged and we move into the apartments provided by Shepherd for the Day Program). We went back to his room, and then I took an early leave until evening because I had my second session with the personal trainer to go to.

So now I am going to talk to myself again, and you can go wander off for a while if you like.

I got on the stationary bike (turned off) for ten minutes. The trainer came in while I did this, and we talked about how I felt after the first session. I told her I’d gotten sore and had been at my sorest last night, but that now, while still sore, it wasn’t too bad. She said we wouldn’t work legs today, and I immediately said, “Good,” as I certainly wasn’t up to a repeat of that workout!

But then what did we do? She had me do squats similar to the ones we did Tuesday. Only this time, I was to touch my butt back onto the exercise bench while swinging my arms forward. Though I had to go lower to touch the bench than to touch the wall, I found these easier. After twenty reps, she told me to do the same thing, only I was to swing a medicine ball diagonally while doing it, much as I had the stability ball last time.

She handed me an eight-pound ball. I handed it back. “This is too heavy,” I told her (gone are my macho days). She then handed me a four-pounder and that seemed about right. I did twenty of the squats swinging the ball in one diagonal direction, then another twenty swinging the ball in the other direction. Again, I found this easier than those we did on Tuesday – they didn’t require as much coordination. But I knew already my abs were going to be sore tomorrow, particularly because she wanted me to emphasize the twisting motion at the top of the swing. I told her I could see where this would be a functional move for me – when I help Gary with his transfers, I end up twisting from one side to the other while supporting some of his weight (of course, soon now, he won’t need me for that ;-)). She said that was why she had thought of this exercise as one I should do (I’d told her before about the kinds of moves I make in transferring him).

Next I sat on a 55cm stability ball, an exercise tube of least resistance secured underneath it, and used the tubing to do shoulder presses, 12 reps. She told me I could make the exercise harder by putting my legs closer together. She also explained that the reason for doing exercises while sitting on the ball was that in order to keep my balance I would be recruiting more of my lower back and abdominal muscles than I would if sitting on a solid surface.

Next I did rows with an exercise tube (one that gave more resistance), fifteen reps, this time me sitting on an exercise bench (she said that at home I could sit on the floor or wherever was comfortable).

Next we went back to one of the first exercises, the ones with the medicine ball. “You lied,” I said to her. “What do you mean?” she asked. “You said we weren’t going to do legs.” “Well, we’re only doing them a little,” she rationalized, then added, “You’ll find I often lie, making you do more reps than I say you will, and so forth.”

And I thought I’d been miscounting because of my CFS. I gave her the evil eye, but apparently it had no effect.

Next we did the shoulder presses again, and then another twisting exercise, that also mimicked the transfer motion: I sat on a 55cm stability ball, wrapped an exercise tube around a post at shoulder height, faced diagonal to the post, gripped the handles of the tube, and pulled from directly in front of me away from the post as far as I could go. I did twenty reps on each side. She told me the way to make the exercise harder was to bring my feet in closer, and that that applied to all other exercises done while sitting on the ball. She also told me not to let my arms go any closer to the post than the center point of my body, because that would allow the tension on the band to lessen too much and give my muscles a rest. We wouldn’t want that now, would we?

Next we did a ball placement exercise, which I told her was just another sneaky way to work in more squats. A six-pound medicine ball was on a bench in front of me. I was to squat down, getting the ball in the process of doing so, then put the ball on the floor, then stand up. Then I was to squat down and pick the ball up and put it on the bench. Twelve of those.

Then I sat on the stability ball and again did those twisting motions with the exercise tube.

And that was the end of my strength workout. It had taken a half hour, because we did some chatting here and there – intentionally on her part, so as not to overwork me (and hopefully she didn’t succeed in doing that anyway). One thing I found out during our chats was not only do we use the same massage therapist, but also the same chiropractor. She’d found the massage therapist through the chiropractor, and I’d found the chiropractor and her through the massage therapist.

I thought she would have me do stretches on my own, since our half hour was up, but she spent about fifteen more minutes doing them with me. I told her after the session that I was glad I’d found her, that I’d had fun. She said it was fun for her too, and she’d call me to let me know what time she could meet with me on Sunday.

I went back to the hotel feeling very happy with myself for completing another workout – I hope I can continue this with no ill effects. I told Gary, when I got back to the hospital, that I bet I wouldn’t have been able to do this a few months ago, that having to help him with his transfers and all the pulling and pushing and lifting I’ve been having to do have made me physically stronger than I was back then.

I did my routine with him, and then climbed into his hospital bed with him. I wondered aloud how the Plainsman (the university’s student-run newspaper) article had turned out. Janet Rogers had typed out in an email to us the editorial about Gary that had also appeared in the newspaper, and that editorial was wonderful (made me cry, and Gary said he read it about a half-dozen times), but we haven’t heard much about the main article on him yet (though I’m sure one or more of the math grapevine will send us the article before too long). Janet emailed us that the main article made the front page, that they used the publicity picture of him that I’d liked better than the one in the city newspaper, and that they’d put in the address for the blog. I told Gary I wasn’t sure the last was a good thing. I told him that when I finally “allow” him to read it (I told him long ago that I didn’t want him to read it because I thought it would inhibit my writing, and he agreed not to), he may feel terribly embarrassed and want to divorce me. “That won’t happen,” he assured me, continuing with, “Who would finish up my bowel program for me?”

Hmm.

;-)

Gary's OT, Gary, Gary's PT, and the other graduate

Gary's doctor


Gary's head nurse


Back row: Gary's PT, Gary's OT, our case manager.
Middle row: Me, Gary's therapy tech
Front row: Gary, Gary's nurse educator (she gave my first family training lectures and a couple of the lectures Gary heard)


Another shot of the motley crew

July 26, 2006 (Two entries are being posted today, so if you want to see the journal entry for the 25th first, scroll down.)

I am sore, but no other noticeably ill effects from the exercise. I’m usually worse the second day after it, so we’ll see how I feel tomorrow.

Today was a rather light day, which Gary didn’t seem to mind (he is a little worried about his shoulders, and we have been icing them several times a day). First up was the therapy tech, and today’s work was done on the queen-sized bed in the gym. He transferred onto the bed and then, sitting along its edge, did hops up and down the side. I asked if he wouldn’t get more lift if he bent more, and he said he probably would but he was afraid of falling off the bed. The tech was right in front of him and promised him she wouldn’t let that happen, so he tried it and did noticeably better scoots.

Next he got his legs up on the bed with a little help from the tech, and by himself got to the middle of it and sat up (a seemingly impossible goal when he first came here). With his legs straight out in front of him on the bed, he practiced the hops again, first to one side, then the other. I pointed out that while he was getting his head down the opposite way of travel, he wasn’t much allowing his body to follow it – only his head was dipping. So he tried to use his body more, and again the difference was noticeable. He called it “using the trampoline effect.”

Next he was to practice going from a prone to a side-lying position and then getting the pillow from under his legs to between them – the goal being not to wake Peg every single morning at 4am to do this for him ;-). The tech said she had to go get a pillow and told Gary not to move. “Don’t worry,” he told her. “I won’t run away.”

He remembered the OTs tips about getting on his side and “walking” on his elbow into a curled position, and he got the pillow put in the proper place with no problem.

His final task was to sit himself up and get himself back onto the edge of the bed for the transfer to the chair. The tech gave him only a little help with his legs.

We went back to his room, and since Gary was to go to the Braves game this evening, his flap dressing had to be changed sometime during the day while I was there, so since he had an hour’s break before seeing the OT, we did it then. The PT came around during this time to tell us that in their team meeting this morning, it had been decided he didn’t need a special mattress – or even a hospital bed – when he goes home. The PT confided to us that she and the OT wished they had known that before now, that there would have been more practice on a regular bed. But Gary and I thought it would be best if he starts out with the hospital bed anyway. It is what he is used to, and throwing in a new factor at this stage of the game makes us uncomfortable. The PT said she’d also thought it best for him to start with the hospital bed. She said he could practice using the rails on it less and less, and whenever he was comfortable with the notion, he could sleep on a “regular” bed.

The good news about this is that it means the medical staff agrees his flap is healing well, that it no longer requires he sleep in a special bed. I know from dressing the wound that it is looking so much better lately – there are just two tiny holes that haven’t quite healed up, both at the junction of two seams.

Though the PT had previously demonstrated to us how to “break down” Gary’s wheelchair for its transportation, we’d actually never done that, so when the OT asked Gary what he wanted to do during her session, he suggested that. The task is slightly more than he can handle independently, but for now the important thing is we have hands-on experience doing it so we can get his chair in the car!

She next wanted him to transfer entirely without help from the mat to his chair. He gave me a nervous grin. I told him he could do it. He said to the two of us, “And you’ll catch me if I fall, right?” and we assured him we would, the OT adding that she was sure he wouldn’t need any assistance, that he could do this himself.

It took him a while to psyche himself up, and then he tried the transfer – but he landed on the tire (very bad for the flap) and the OT had to help him over. He then made the transfer back (the downhill direction, and therefore easier), the OT saying it had been on his own (though I noticed she’d kept hold of his pants this time). She commented that it hadn’t been a very high depression transfer, however, and she said that she was learning how much help I’d been giving him, that I was stronger than I looked. She asked me how much lift I thought I’d been supplying him with, and I said it varied, that sometimes he seemed to get tremendous lift on his own, but sometimes little, that he wasn’t consistent (depending on how tired he was, etc.). I didn’t admit, but maybe I should have, that I never acted purely as a guide – I’m too scared to not give him a little lift, as I want to make sure he lands where he’s supposed to. But maybe that’s made the OT think he is better at it than he is.

She had him do another transfer both ways, the OT saying that it was “all him” both times (though she’d been hanging onto his pants), but that he wasn’t getting very high. The PT walked by, and the OT said to her the same thing, that she was learning how much help I’d been giving Gary, that I’d been giving him lift. But the PT said that she’d done the transfers often enough with him that she thought that even though he doesn’t always get tremendous lift, he still gets enough to clear the wheel.

So, I’m not absolutely sure he’ll get cleared to do even the mat transfers on his own this week – there’s really only tomorrow to go. He did confide to me after his attempts that he’d been afraid to bend as much as he normally does in the transfers because of his “balance issues”; without the security of having one of us have our hands on his hips he was afraid he might fall. And of course, if he doesn’t bend his upper body as much, his butt doesn’t lift as much – that equal and opposite reaction thing.

After the OT session he had a “group” session (an outing up the block to Chick Filet), but before they took off on their outing, there was a graduation ceremony! He and another patient are being discharged this week, so their teams members had a ceremony for them, while everyone else in the therapy gym clapped and cheered. In the background “Chariots of Fire” played, and the therapists put traditionally styled caps on the two graduates. They both got Shepherd T-shirts, which say, “Outroll, Outmaneuver, Outlast,” and fanny packs (good thing the gift shop hadn’t had any more yesterday). Each of them got a certificate of graduation from Shepherd Inpatient Therapy, and since they’d both completed their course work, they got Super Student Award certificates. The other man also got certificates for Best Tolerance of Stretching (I think that was a joke) and Best Homegrown Tomatoes. Gary got a certificate for Most Likely to Need a Helmet for Doing Wheelies and a “Shiny Hiny” certificate from the skin team, the certificate in the shape of a butt and covered with foil. Then pictures were taken – Gary’s had the members of his Shepherd team in it and me. The pictures came out pretty good, but I don’t have a scanner here, so I guess I can’t put them up on the blog until we get home.

I know it’s silly, but I cried a little during the ceremony.

After the ceremony, Gary told the skin PT, who’d handed him his certificate, that he’d now like to see pictures of his flap. She wasn’t sure they still had any, though. When he and I got on the elevator to go on the group outing, I looked on my cell phone camera and showed him a couple of pictures of the area in question – I’d taken them to make sure I'd know if things “down there” got any worse. One picture was taken at the end of June, before his flap surgery, and the other taken after the surgery. He said he was glad he hadn’t looked at them at the time.

Next came the “group push” to Chick Filet. Gary’s task was to check out the men’s room for accessibility. The PT assigned to him (not one who has worked with him) commented as she watched him maneuver to get through the door, “He never gives up, does he?” I agreed he doesn’t.

The members of the group ate their ice cream or drank their shakes, which someone else had had the task of ordering (Gary only had a little of his shake because he was worried about the effects on his IC levels), and then the Shepherd leader of the outing gave Gary the task of handing back change to four members of the group (everyone had given a few bucks to cover what they thought they’d be buying). Gary’s PT joked that since he was a mathematician, he ought to be qualified for the task. The leader gave Gary the receipt, and she started explaining to him how to make change! (So-and-so has given five dollars, and his shake cost $2.79, so you need to subtract – ) I couldn’t help it – I said, “I think he knows how to do that.” And yes, he lived up to my expectations.

On the way back, he still couldn’t make it up his nemesis curb cut, but other than that, things went smoothly. The PT assigned to him gave him help up the Blue Carpet instead of making him do it himself because she said he would be doing a lot of pushing at the Braves game tonight and she didn’t want him to tire himself out beforehand.

After he got back to his room, he and I got him transferred into bed so he could have a little rest before his Braves outing – and to get his feet up for the benefits to the IC.

So, that’s where I left him today. I went off to the chiropractor then went to the hotel and used the time I’d normally be spending with him tonight to catch up on the blog. I’ll let you know tomorrow how things went at the game!

All for now. (Except, yikes, I’ve just noticed how much sorer I am now than I was earlier today!)

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.

July 24, 2006

Today’s therapy started off with the PT, and she started by having Gary practice tub transfers (onto a shower bench in a regular bathtub, as many places he’ll travel to are not going to have a roll-in shower). At this stage, she has to help him quite a bit – 50 to 75% , mainly with getting his legs in and out, but also with the transfers – so unsurprisingly she doesn’t expect him to be “cleared” to do this by the end of this week. She claimed, however, that she should be able to clear him for bed transfers on his own by the end of the week. “Naturally” I felt uneasy about this, but Gary did too – his near slipping off the edge of the bed is too fresh in our minds. We told her about that, and she reminded him that if he found himself with less than half each thigh on the bed, he should throw his head forward and down while depressing, in order to scoot his butt back on the bed. But of course, this is assuming he has the balance to do this – as well as the immediate recognition that he should.

Our bringing this up decided her on having bed transfers using the hospital bed in the gym be the next thing he worked on – the bed is like the one he’ll be getting for home use. After he did a couple transfers back and forth (why is it he always does exceptional ones when they’re watching?), she had him try something new – “hovering.” Here he was supposed to depress upward in his chair as if he was going to do his transfer to some other surface, but then he was to hold it there for a second, and then “ reverse” the direction, literally using his head to do so, in order to end up back in the chair. A harder version of this exercise would be to actually begin to carry through the transfer to the other surface, but then reverse it in mid-air so that he ends up back in his chair and not on the other surface. (“O. . . kay,” Gary had said dubiously when the PT brought this exercise up first – she then had him do the easier version.) The application of this harder exercise would be the following: if it should happen that some time when he is doing a transfer he realizes there is something not quite right about it, he would be able to reverse his direction (thus going against the direction of his momentum) and go back to his chair without making the transfer.

He didn’t advance to that harder version of that exercise today, but even practicing the easier version would build his strength, the PT said, and Gary could see that. The PT also pointed out that it would help him develop more control with his transfers, that he needed to learn to transfer out of strength and control, not just out of momentum as he has been doing up to now (and was what they’d wanted at the time – the first goal is to always have the patient end up in the chair! Finesse comes later).

It was the end of his session with her, and he asked her what the therapy tech would do with him later (the therapy tech does what the PT tells her to do). When Gary found out it would be strength training, he brought up his shoulder problem. It now seems to be centered in the front of his shoulder, and the PT said it was biceps tendinitis. She told him not to do any exercises that gave him pain and to ice the area after his session with the tech (I brought him ice wrapped in a latex glove after both that session and this one with the PT).

We had a little break before his “Bladder Two” class, and he used it to call the people who would bring out a van for him check out. The person emailed him with the information, and later in the day Gary picked out a minivan he’d like to see (a Toyota Sienna with a ramp, removable seats, wheelchair tie-down) and arranged for it to be brought to Shepherd tomorrow afternoon.

The “Bladder Two” class was on dysreflexia, which I’ve already told you about. After that came a break for lunch and so forth, and then the first thing scheduled for the afternoon was a session with the OT.

With the OT, Gary brought up the problems we’d run into during our TLA experience, so she had us simulate the experience. First Gary and I got him transferred into bed. I went to lift his legs up, but she asked him what of that he could do on his own. He surprised himself (and me) by getting his upper legs onto the bed (by leaning on his elbow on his side and tugging at them). After that came another surprise of him being able to sit himself up from this side position by hooking his arm around his thighs and pulling (he’d done this a couple times before, but this was so much smoother than he’s ever done). He needed to do this to get himself properly oriented in the bed, i.e., head toward the top. Because of flap restrictions this was about the best he could do, which left his lower legs for me. But since that was so much less weight for me to handle, that was much, much easier than getting his entire legs on the bed. Easier on me, that is. I guess it’s going to be a matter of whose needs are greater at the particular moment he needs to get his legs up on some surface, since as you can probably see, he had to do quite a bit of work to get this far. But, he wants to be independent, and this is what he has to do to help get him to that state.

He and I then got him in the prone position, as I’ll have to help him with that for the time being. I got him padded off and put the sheet and blankets on him as I always do. Then we pretended it was that four in the morning time, and he needed to come off the prone position and go onto his side all by himself. It actually worked okay after the OT gave him a couple of tips. The blankets didn’t seem a problem – he got them off far enough that he could maneuver, and later, got them back on – whereas the previous day he’d found them an insurmountable problem (insurmountable without help, that is). We’re not sure about his foot padding, because a pillow ended up directly under one foot, whereas ideally the foot would float, so we’ll just have to try that out and keep a watch on his skin for any negative changes there.

Once on his side, he was able to get a pillow between his legs, by following the OT’s advice of getting up on an elbow and “walking” it so he ended up in a position curled enough to enable him to push the pillow with one hand and pulling it with the other (and the same technique would allow him to remove such a pillow). (Speaking of pillows, the OT remarked that in moving about the bed, he looked like he was swimming in a sea of them. Gary laughed. “And I need them all,” he noted.)

I asked him why he’d had such problems the previous day with the covers, etc., so that we could recreate the difficulties, but he said that he didn’t know, that maybe he’d just run into a mental block at 4am and given up too easily.

The OT said she had to soon leave to see another patient, and told Gary to now work at getting over to the edge of the bed and his lower legs over it from the side-lying position he was in. As he worked at it, she remarked, similarly to what she had before, that he was not at all like a member of the senior team (again, “senior team” meaning those over 55), that he was more like the twenty-year-olds she worked with (we still can’t quite believe that). She also mentioned that he was far more advanced than people she usually worked with, that people usually left here earlier than at his present level of skill. Again that surprised us. Gary told me later he would have thought it downright dangerous to leave much sooner than where he was at now, and that he would have found it scary to leave much sooner than we plan to.

Back to his task of getting over the edge of the bed in preparation for a transfer to his wheelchair: it took a lot of time and a lot of effort – and the OT left before he finished, but he did it. He said it was great to know it was possible.

Next up was a session with the therapy tech. Gary did his terrible threes, then some balance exercises. One thing he has definitely improved on is that he now catches himself well when he loses his balance ;-) (Actually, that is very important.) He even made up an exercise of his own, trying to reach out for a two-handed touch. It took him a few tries before he could do one of those with a degree of control instead of a quick bat. After the successful one, he looked up at the tech and asked, “Isn’t time up yet?” We all laughed (including Gary), though we knew he wasn’t saying this purely in jest. Time really was up, though, so we did his transfer and went back to his room. I went to the chiropractor a little earlier than usual (he expressed approval of the work done by my latest massage therapist) and then I did my usual evening routine.

Through most of the day I had still felt a little subdued by our TLA experience, but I felt back to my normal by the time I returned to Gary’s. I got there as early as I could, so we could have a bit of a phone conversation with Joe. In order for things not to go too late, I threw Gary into the bed (well, okay, we did a transfer – and in fact, Gary got his own upper legs on the bed just as he’d practiced with the OT earlier! Saved me some effort, cost him some, and at this point he won’t always have the energy to expend on that, but it’s another sign of his growing independence), and he talked to Joe while I did the stretches on him (I caught snatches of conversation about the house, the new garage, our pets and Joe and Dolores’s pets). After their conversation ended, Gary and I went through the rest of our routine.

While lying in bed with him, I had the thought that I should probably follow him around at the university his first few days – so I can give y’all a report on how things go ;-). Gary joked that if I stuck to the accomplishments at home, the entries would look like: “Today, Gary successfully fed the kitties.” He then decided that would actually be nontrivial – that he was now so slow at everything that by the time he’d opened the bag and put in the measuring cup, the cats would have dived into the bag and inhaled all the food – not a mark of success (unless you’re taking the feline point of view).

As typical, our conversation was stopped by the speaker phone conversation of Gary’s roommate. We heard him talking about the hoyer, and whoever was on the other end of the phone misheard and thought he’d said that in order to lift him, he was attached to the hoyer by his neck (he’d really said “net”). I told Gary we should tell his roommate that that was indeed the new method for using the hoyer, and demonstrate it on him. We started laughing so hard that had the rails on Gary’s bed not been up we would have fallen out. (Lest you think otherwise, this roommate is a very nice guy and we really like him – except when he talks on the phone.)

To finish, another picture taken by Janet Rogers (see the blog http://drpeg2003.blogspot.com/ ). Evidently last Saturday the math volunteers decided our family room needed more illumination. The caption below the picture is Janet's.


How many mathematicians does it take . . .?

July 22, 2006 (Bet you thought we hadn’t survived the TLA experience. Well, we did. Barely. What follows has received little editing.)

I shot awake in the early morning, thinking I was hearing Gary screaming as he fell out of bed. Gee, I wonder where that dream came from. I got up to go to the bathroom – at least, that had been my intention. My back had stiffened up, and I could barely get out of the bed. I was very worried that I had really done something bad to my back, but in the morning I just found it very sore.

Gary’s Saturday therapy session didn’t begin until 11:30, so I stayed in the hotel room until close to then, icing my back and working on the blog until shortly before that time. The PT was one we’ve seen, but she has never led one of Gary’s sessions. She was an “old-timer,” having been at this job for fifteen years. Presently she works part-time because of her fifteen month old daughter. She said she’d work more – and her employers would like her to – but Shepherd didn’t have a day care program, said they couldn’t afford it. Wouldn’t it be nice if such programs were mandatory?

The PT started him off on the rickshaw. She asked him if he wanted to try five sets of twenty. I couldn’t help laughing, but Gary said “Okay, I’ll try.” She gave me a look indicating she was impressed with him, and then walked a short distance away to help another patient. A moment later, after he’d backed into the rickshaw, Gary looked at me, realization apparently having hit. “That’s a bit more than 3 sets of 10 (his usual amount), isn’t it?” I agreed it was. He churned them out, the last ones with effort. I made comments on his form. Helpful ones, of course ;-)

Next he got on the lat machine, which he hadn’t been on before (there isn’t one in the third floor gym where he does his therapy every day but Saturday). She had him do three sets of fifteen. Problem was, he couldn’t get the bar down himself, and after a set he couldn’t release it – well, he could, but they wouldn’t have liked the weights slamming down on the stack. So I helped with that, trying to use my whole body in the effort and not just my arms.

Next she put him on the hand cycle, telling him to do it for fifteen minutes to twenty minutes. I knew he would need his muscle juice ;-), so I went off, got it, came back. Minutes later, he let out a “whoo!” and stopped for a break. The therapist smiled at him from the other side of the room and said, “Was that noise for my benefit?” He told her yeah, that he’d wanted her to know how hard he was working – and that she was torturing him. He continued with the exercise, going about eighteen minutes, taking maybe three breaks. I reminded him how far he’d come – just weeks ago, he hadn’t been able to do more than a minute of the hand cycle without needing a break. (On Sunday, however, he said he regretted doing these exercises – his shoulder is now bothering him more than it had been, though the exercises had seemed fine at the time.)

It was then time for a weight shift, and as he did it, I reminded him to extend his scapula farther (as yesterday’s PT had told him to). Today’s PT walked over just as I said this, and Gary remarked to her, “She pushes me.” She laughed and said she knew that and thought it was great. Gary said he needed me to do that, because he was lazy.

I doubt they think that of him!

She then took us to the rec room for Gary to practice transferring on uneven surfaces – in this case, from his wheelchair to a low and soft chair. The downhill direction went well, but he couldn’t transfer in the upward direction, even with her help. She suggested he use his transfer board, got it out, and placed it so it went from his wheelchair down to sofa chair. The angle was very steep, and he looked at the board dubiously. But she told him not to worry, they’d be able to do it together. So he took one of his “hops.” She held him in place so he wouldn’t slide back down the board (dangerous for his flap, for one thing), and he took another hop and made it to his wheelchair. He told me afterward that if sometime he wanted to get into an SUV, he’d have to direct the person helping him to aid him in the way she had. The thought of that makes me nervous; at the least, I’d want to make sure the person helping him was strong!

Shortly after that session ended, I left for my appointment with a personal trainer. (Good thing I didn’t listen to Yahoo! because the supposedly seventeen minute trip took me thirty-five minutes – and this is without getting lost.) I can’t remember if I told you I was going to see one. I had told my massage therapist that even though I’d been to various doctors and physical therapists, I needed more guidance on what I should do to, first of all, help my back, and now, to be physically strong enough to help Gary. She had recommended her personal trainer. I had been reluctant to try that, but I finally made an appointment to see her.

I wish I had done this weeks ago – at least, based on this first session. I told her about what I was having to do for Gary that was physically difficult and causing some pain – helping with the transfers (in which I support some of his weight and have to twist with it to guide him to the next surface), pulling the draw sheet he lies on in order to move his body around the bed, pushing the pillows slightly under him while he’s lying on his side, lifting up various body parts to get pillows under them, helping him with his stretches by providing a little more force or supporting a body part (have you ever tried to hold someone’s leg straight up in the air for them while they’re lying on their back and they can’t give you a bit of help with it?), tugging those damn t.e.d. hose up his legs and pulling them down. (Come to think of it, I think Shepherd should expand their program and give PT and OT to the caretakers – teach us the ergonomic ways to move, give us programs to increase our strength, etc.)

The personal trainer said that based on what she was hearing, she thought we should work on the areas of muscular strength (she mentioned we’d do the traditional approach here – less reps and more weight, shooting for eight reps to exhaustion), endurance, posture, flexibility, and balance. (I admit I’m a little nervous about all this, afraid something is going to set of my CFS.)

We went through a mini-session. She said a warmup of at least 5 minutes was mandatory, and that it would be best if I got to the place early and did that on my own so it wouldn’t cut into our session. She put me on a recumbent bike, but it bothered my right leg, so we tried a “traditional” stationary bike, and that was better. She didn’t turn it on, though, because if the bike was on, it would “make” me pedal at a particular rate, and I am fearful of pushing myself (too many bad memories from these past fourteen years of trying to start an exercise program and crashing a short time after that).

She then had me do a type of squat – she placed a large exercise ball on my low back, and I leaned against it and and did the squats, rolling up and down along the ball. I did two sets of fifteen reps. (And this reminds me, because such a ball was in the package – did anyone come across a package containing my Gaia chair while they were putting our furniture back in place? It had arrived the day before the accident, and Gary was going to put it together for me over the weekend.) Next we went over to an inclined bench, and she handed me two ten-pound dumbbells and told me to do chest presses – two sets of eight – while she guided the weights. I looked at the dumbbells. “Ten pounds. Are you sure I should start with that? My shoulder has been bothering me.” (Such a wimp – at my best, fifteen years ago or so, I could bench press eighty-five pounds and squat one hundred and eighty-five pounds. But as I said, I now have these fears . . . ) She told me to try them, and to ice my shoulder afterwards. I got through them fine, but I still wasn’t sure that had been all that great for a problematic shoulder.

Next came one-armed rows on a seated pulley machine. She had it set on one pound, and that was quite enough, particularly for that shoulder (if I forget to mention in the journal entry for Sunday, my shoulder doesn’t seem any worse for this – no better, but no worse).

We finished with stretching of the shoulders and back, all of which she assisted me with. I am going to try to be more assertive next time and tell her I really don’t want her to assist me – people assisting me in stretches have wrecked up my leg more than once, and I am afraid of a similar result when she does my shoulders (and I’m sure it doesn’t help when I am tensing them in fear).

Anyway, I have signed up for ten forty-five minute sessions, going three times a week. I have time for this, right? ;-)

After that session, I attempted to return to Shepherd. I was dismayed to see Lenox Square go by on my right – I had gotten back to Peachtree all right, but was now going the wrong direction on it. (Note to self: always print out a copy of the directions for getting from point B to point A. It never seems to work to just try to reverse the directions for getting from point A to point B – there is always a wormhole in that direction. At least, I’m pretty sure that is the problem.) Then I made the mistake of actually turning into Lenox Square to try to turn around. If someone knows a simple way this can be done, please publish your findings – I’m sure all of Atlanta would want to know.

So now I was all stressed out because I was supposed to be back at Shepherd by four so we could be checked into the TLA. I made it just before four, but there turned out to be another hitch. In the morning, I had called Gary and said I really didn’t think my back could handle carrying all I would need to do my cooking at the apartment down to my car from the hotel room then from the parking garage to the apartment (on the second floor of the Marcus building). I didn’t know what to do – I asked him to ask if under the circumstances it would be all right if after we checked into the apartment I zipped back to the hotel and cooked my zukes for dinner, at the same time setting my rice cooker and crockpot to cook over night, and then zipped back to Shepherd with the finished zukes, then in the morning zipped back to the hotel to get my breakfast and lunch rice. He said he was sure that was okay, and I said I thought I wasn’t supposed to leave him alone at all. He said it was supposed to be a trial run of being at home and I wasn’t going to be with him every single minute of the day while at home.

Well, I was right – I wasn’t supposed to leave him. Gary tried reasoning with the nurse, but she said it was official policy. So I went back to the hotel to get some supplies. Since there was no way I was going to carry all the stuff I would normally use in twenty-four hours (rice cooker, crockpot, steamer, zukes, rice, etc.), I just brought the rice cooker, some rice, a package of poha (flattened rice, kind of cooks up like oatmeal), and forewent any vegetables until the next evening. I had already packed my jammies, pillow, nightmask, earplugs, comforter, and two fans for white noise. Did I mention I am high maintenance?

To get us moved into the apartment, two nurses rolled Gary’s hospital bed, on which lay his clothing and supplies – for ICs and bowel program, etc. (Now he has become high maintenance.) (Since he would be sleeping on a hospital bed at home, they had decided it was best he sleep on one in the apartment instead of him using the queen bed there.) Gary pushed along his rolling bed table with his feet while I pulled it on the other end – we were both trying to save my back a little (that table doesn’t roll easily; it was needed to keep his supplies within his reach). So we formed a little caravan, going down the hall from the Shepherd building to the Marcus building, into the elevators (we needed two – the bed and a wheelchair could not fit in the same one), down to the second floor, over to the entry to the ABI (Aquired Brain Injury) unit, through that entry after a nurse buzzed us in, then into the TLA.

After getting the nurses to bring me some more blankets and to bring Gary more washclothes, they left and I “unpacked” the bed (taking the stuff of it and organizing it on the tables in the room). It was then that Gary realized he’d forgotten stuff like his grooming items and, more importantly, his plastic pan for his bed bath. So we made another trip back to his room. Then I needed to get all the stuff from my car. I was paranoid about him not accompanying me every step of the way (in case that got reported to the nurse), but he said he was going to stay in the hall on the first floor by the security desk, and I told him if we got in trouble, it was his fault! So then I made four trips out to my car, leaving the items near him each time. Then I carried them into the elevator while he prevented the elevator from closing. Then I carried them out of the elevator to the entrance to the ABI unit while he prevented the elevator from taking off with the remaining items. Then I got them inside the door to the unit while he prevented the door from closing (the door locks each time it closes, and you have to be buzzed in by a nurse at the desk). Then I finally got them into the room.

By this time – 7:30 – I was pooped, and he was tired too. So we got him transferred into the bed, we did his stretching (which first involves getting him in a straight position on his back), I changed his bandage (which first involves getting him into a prone position – and if you haven’t picked this up by now, this turning business isn’t easy for either of us), we got him undressed (first I pull off the long sleeve shirt over his head while he lifts up from his prone, then he turns from side to side so I could pull off his pants and those damned tight t.e.d. hose), then we got him turned onto his side. Now it was almost 9 pm. I got my bed ready, got into my jammies, set the alarm on my clock for 10 pm, set the clock on his bed table, and got in with him for a while. At 9:59 the nurse came in with his pills. At 10, the alarm went off, and he couldn’t hear the buzzing. So after he took his pills I set the alarm on my cell phone. He could hear that, so I set it for 4am (ychh) and put it on a bed table.

At 10, he did an IC, and I lay in my bed waiting for him to finish. In previous weeks, the OT had worked with him on his trying to get into a prone position, and the conclusion was that I was going to have to help him prone at the “beginning” of every night at least until his flap restrictions are removed. So after he finished the IC, I helped him prone, stuffing three pillows under his chest while he rose up on his arms and putting pillows above and below his knees. I couldn’t seem to get it right and I got frustrated. It was now 11pm. “I’m sorry you have to do all this for me,” he said. He had tears in his voice, which melted my frustration. I told him I was sorry that I wasn’t sure I was doing this right.

I slept pretty good – surprisingly so, under the circumstances – until that 4am alarm went off. I had been sleeping rather light at the time, so at least I wasn’t jarred awake. I heard Gary move, and the alarm stopped. But then it went off again about a minute later (I can’t figure out that stupid cell phone alarm – sometimes it turns off, sometimes it goes on snooze and sounds again one minute later, or ten minutes later, or seemingly whenever the hell it wants to). So I got up, took the cell phone out of Gary’s hand, and shut the phone off. I didn’t say anything, as I was hoping not to wake up too much. I was feeling sick, actually – I have learned from Dr. Rea at the Environmental Health Center that around four in the morning is the time when the body is cleaning itself, dumping all its toxins into the bloodstream, and so on, and that that is the time people with allergies of all sorts tend to feel their worst. No doubt making things worse was the fact that my body clock was saying this was not the time to be awake.

A minute later, I realized I was hearing absolutely no noise from Gary’s bed. I got up again, went over to him, and whispered, “Gary?” He replied, “Yes?” “Aren’t you supposed to be doing something? I don’t hear anything.” He then said he was thinking about what he was going to do next, how he was going to get out of the prone position to do his IC. I admit, I got unhappy – he was supposed to have been practicing this with the nurses. 4am is not the time to be thinking this through. I hope I didn’t let my feelings show – I guess I didn’t, as later, when I asked him about it, he said he hadn’t noticed anything amiss. Of course, it was probably hard to register anything at 4am!

He couldn’t figure out how to get out of the prone while he had the covers on, and it seemed the extra pillows under his feet were going to be a problem too. So I took the covers off him and also removed a pillow from under one ankle. Before I had a chance to get at the pillow under the other ankle, he got onto his side in a pretty good position, so it could possibly work with those extra pillows. He now definitely knows this is something he needs to work on, and he needs to add in the additional complication of covers. We also decided this would be a reason to have a mirror over his bed, so he could see what position his legs were in and if he was okay (at one point, one of his legs would have gone off the bed if I hadn’t been there to catch it).

He then did an IC, and I laid in my bed. After a while, I checked on him – his last two ICs had been unusually low, and I was afraid this one would be way too large, maybe even too large for the bag. But it was going fine. He finished and put the bag on the table to be disposed of in the morning. Next task for him (and me) – go back to sleep. Only, his covers were off and he wanted them on. I almost put them back on him, but then stopped. Feeling a bit guilty – and sorely tempted to just put the covers on him so I could go back to sleep – I asked if he could put them back on if he used his grabber – which I handed to him. If he’d told me he didn’t want to practice now, I would have put the covers on for him, but he didn’t say anything, merely attempted it. He did pretty good, but we decided this was another reason to have a mirror put over the bed, so he could see where the covers were and how to move them.

So now he settled back onto the bed for some sleep. But he had a stiff look on his face. “Are you okay?” I asked him, standing at the head of his bed. “Yeah,” came the quiet reply. The way he said it didn’t convince me. “Are you a little frustrated?” I asked. “It’s hard,” he said, his voice breaking. I leaned down, gave him a kiss, and caressed his head, saying, “I know.” His voice changed. “But I’ll get it,” he said resolutely. “Yes, you will,” I told him, adding, “it’s just not fun practicing at 4am.” “No, it isn’t,” he agreed. I told him I loved him, even if I made him use his grabber on his covers at 4 in the morning. He said, “(It was) Good for me. Tough love.” (‘Tough love’ is the term the therapists use for how the caretakers should treat their family members – not doing for them what they should be doing (or learning to do) for themselves.)

Now it was 4:50. I got into bed. Sleep didn’t come, so I meditated, then finally fell back asleep around sixish. At seven, I tore awake from a nightmare. In the dream, I had left Gary in the TLA, gone down the hall, found a bed, and gone to sleep. An hour later (in the dream), I woke up and went back to the TLA. The room was now longer and there were two beds in it. The man in the first bed wasn’t Gary, and neither was the man in the second bed. Panicked, I asked where Gary was. The nurses told me he’d called out in delirium and they’d discovered he had a horrible infection and was going to die, and no, I couldn’t see him ever again.

Do you think this could possibly have been a guilt dream related to my almost leaving him for a couple of hours to cook my zukes?

At eight, I heard Gary call my name. “Yes?” I answered, no doubt more sweetly than I would have had I not had that dream ;-). “I need to turn,” he told me. “So, turn,” I said. I don’t know if he appreciated my humor. Anyway, I got up and went over to his bed, and forty-five minutes later, he was turned onto his other side – again, I helped only when he gave up on some maneuver.

Over the intercom (which fortunately hadn’t gone off during the night) they announced breakfast trays were on the floor. I got Gary’s, then thought about trying to catch a little more sleep, but felt that was hopeless after about fifteen minutes.

So I set up his breakfast tray and started cooking myself some poha. Gary’s nurse for the day shift (from the third floor of Shepherd) came about nine-thirty with his morning pills and asked how things had gone. He said he’d discovered there were more things he needed to practice. He mentioned about the 4am IC problems in turning from prone position to side position, and so forth. She suggested that this week they try to put him on a different IC schedule, one where he extends the IC time overnight to about eight hours (his levels would have to stay low enough for this to be “allowed”), and that he stay in that prone position for those eight hours. So the idea would be he would do an IC about 11 pm, then prone until 6 or 7 am before doing the next one. If he can’t get into the proper position immediately before or after that IC, or he can’t get the covers off or on, or some other problem arises, at least it would be easier on me to help him at 6 or 7 am than 4am. Gary isn’t absolutely sure he can always take being in a prone position that long (so far, after about six hours, he has an urge to turn), so he still wants to work with the OT on that even if he is able to extend his IC time to eight hours.

And if he can’t extend his time to eight hours, I guess for a while I may have to get up with those cows that probably still live out on Gold Hill.

After he finished his breakfast, it was time to start his morning routine. First came the bowel program. He finds it easier to lie on one side than the other for that (because of his flap restrictions, he can’t sit on a cut-out toilet seat to do the program), and he was the “wrong” side. So he turned from that side, onto his stomach, over to the other side (the advantage of a hospital bed is that it has rails for him to grab; the disadvantage is there is not much room to maneuver). “There, that was easy,” he joked as he finally got into the correct position himself. He looked at the clock. “Good thing Debra isn’t coming until 12:30. I should be ready by then.” (He thought he was joking, but it turned out he wasn’t.) He then pretended he was having a conversation with her. “How did I spend my morning? Doing bowel program, then bathing, then dressing. . . . And putting on these damn gloves,” he added as he struggled to put on a second pair of latex gloves over the first pair. We laughed, and he remarked, “Good thing we can laugh about it.” I then reminded him that we also had his skin check and his stretching routine to add to that list of things we had to do this morning.

He then started in on the bowel program. Happily for both of us ;-), for just the second time ever he was able to do it all by himself, with a final “all’s clear” check by me (you really wanted to know that, didn’t you?). The only thing we took note of that we hadn’t realized before is that he may need more than one bed table to put all his stuff on.

It was already time for another IC, so I got all the washcloths ready (three soapy, three moist) and handed him all his equipment. (He had thought he’d be up by the time for the next IC, so hadn’t had his stuff prepared for it.)

Next it was time for a bed bath, so I brought a ton of washcloths and towels to bedside, and filled up his plastic pan with warm water and brought over the liquid soap. He did all but his back and legs, which I did for him. He had checked the parts of his skin that he could see during his bath, and I checked the rest.

Next came getting dressed (we were supposed to put lotion on him after the bath, but we forgot). He got his shirt on, I got the t.e.d. hose and the pants on him. He had planned on wearing the Dockers for when we went out to eat with Debra, but I asked him to please wear the stretchy pants, which he agreed to. This reminded me that I needed to see if I’d heard from Debra by email – I wanted to make sure she knew where we were. I realized I hadn’t turned my cell phone back on, and thinking she may have called, I did so. She had called and left a message to say that she was sick and wouldn’t be able to make it. I was very sorry to hear that, of course, but delaying her coming to another weekend worked out better for us too.

We next went through his stretching routine. Then, at last, it was time for him to get up. And it was almost 12:30. He joked, “Only seventeen hours in bed!” and that his work day would have to be from 2 to 4. He turned serious and said that only now did he realize that he’d been relying on the nurses a lot more than he had thought he had been – he’d thought they were only doing things for him that he would find easy to do himself, but this experience showed him this was not the case. I fear I was rather shell-shocked from experiencing how much help he had needed from me (being tired from the disrupted sleep didn’t help matters) – we’d done the parts, but never before put them into the whole. I tried to keep in mind that it would get better in time, for both of us. But in considering the immediate future, we wondered how were we going to do this on our own when he has to be at Day Program at 9am?

He joked I’d have a lot to write up about this experience for the blog, saying I should put, “We discovered we weren’t quite as ready as we thought.” Actually, that should be as he thought, since I’d approached this experience with much more trepidation about our preparation than he had.

We now had a few hours “free” but neither of us felt like going out anywhere or doing anything. I stayed in the TLA and worked on the blog, Gary watched some golf (I’m sure the golfers are groaning – it was some big tournament, a very emotional one for Tiger Woods), then he went on the one computer on the floor that was available for patients. He discovered we were front page news on the online version of the city newspaper (here’s the link, for however long it works – it’s long, so you may have to do a little copying and pasting: http://www.oanow.com/servlet/Satellite?pagename=OAN/MGArticle/OAN_BasicArticle&c=MGArticle&cid=1149189327559

In the actual article, there is a picture of him in the wheelchair in front of the volleyball net; I am the unidentified woman in the background ;-). Jack Brown sent me a pdf file of the article – I’ll try to send it through to those who get this by email, but make no promises that Yahoo! will allow a mass mailing of such a file). Gary came to get me to come read the article. I first skimmed it and noted I wouldn’t have had to spend all the time I did in talking with her . I then read it more carefully. I thought it was nice, and pretty accurate. One thing she said that wasn’t true (but is minor) was that Gary had felt panicked after touching his leg in the emergency vehicle and realizing he was paralyzed. I know he never said that, and he never felt that way. He’s always just said that it was a weird experience, though he noted it would be a natural response to feel panicked, and the reporter must have assumed it had been for him. I told him that at the time it probably hadn’t really sunk in what being paralyzed meant, and he agreed it was a gradual realization – his first thought about it was that they’d patch him up in Birmingham and after a few weeks they’d send him home in a wheelchair. We laughed at that, and Gary remarked, “Yeah, we can laugh about that now.”

Anyway, this article came out just when I needed a little bucking up. Gary pointed out a couple of quotes of mine that he’d really liked. He asked me how I liked the last one of his: "I was never depressed about this situation," he said, attributing much of that to his wife. "It’s much, much harder to go through this alone."

I told him I liked it very much – but that I wasn’t sure it was true, as I’d thought he wasn’t the type to get depressed. He said the quote was true, and that he would be depressed. He got emotional, and I gave him a hug. He said it was a good thing the interview hadn’t taken place at 4am this morning, as he would have said, “Yes, I’m depressed – I can’t move my legs around in this bed.” I said I would have said, “The hell with this – I’m outta here.” We gave little laughs and exchanged another hug.

We were eager to move back to his room – he needed to do another IC, I had to get back to the hotel for my massage, so we packed up and called the nurse to come get the bed. Gary said we could tell her our stay went as follows: We came, we got unpacked, we went to bed, we got up, we packed, we left.

Well, it was definitely a good experience to see what needed work on. Also, to realize how much time this might take us in the beginning, tho with experience we’ll get faster at it – when we can just do it and not think about it. Gary says we ought to be able to cut at least half an hour off ;-).

I zoomed back to the hotel and threw myself on the massage table that had been set up by the person I’d arranged to have a massage from (okay, it didn’t happen exactly like that, but it felt like that). This person was very good, and it was an added bonus that he came to me instead of me having to go to his office. The only hitch in that regard was, I wanted to go back to the hospital right after the massage and he was in Mellow Massage Therapist mode. (When I told this to my chiropractor, he summed up my exact feelings: “Okay, I’m relaxed, now get out.”)

Just when I stepped into Gary’s room, about a half hour later than usual, my cell phone rang. I knew it was Joe, because he had called when I was on the massage table (I hadn’t picked up but had later gotten the message that he was going to call). Gary talked to Joe while I got the bed ready for Gary to get into it. Gary told Joe we were running late and still had all our evening routine to do, so the call was a short one (Gary apologizes to Joe if he seemed abrupt – we were very tired). Gary relayed the news to me that Joe and Dolores made it back to their home safely, and the dogs survived their absence. I could also hear that they talked about the house and the crew of math volunteers.

After Gary ended the call, we got him transferred into bed. Next was supposed to come the stretching, but Gary said we should skip it. “Duty” warred with fatigue, and I asked if he was sure we shouldn’t go ahead and do it. He said it would be all right to skip one night. Fatigue won, and I didn’t put up any more of an argument. I changed his dressing, got him proned, hoodled a short time, then we said our goodnights and I told him I’d see him tomorrow. “But thankfully not at 4am,” he said with an ironic smile.

Now to finish with some odds and ends. I got emails from Janet Rogers and Jo Heath about the furniture moving. They said they’d almost made a party of it, and Janet sent us a picture of the “movers.” I’ll insert it here in the blog.






Seated, left to right: Jack Brown, Wlodek Kuperberg, Jo Heath, Michel Smith, Jack Rogers, Donna Bennett. Standing, left to right: Bob Heath, Jane Brown, Piotr Minc.

Don’t get too comfortable, guys. (I hear you freaked poor Blackjack out, when he came into the room and suddenly realized he’d walked into a roomful of strangers. In Jo’s words, he bolted out faster than she would have thought a cat his size could move. (You should have seen him the time he took off so fast he couldn’t gain purchase on the kitchen floor, and though his legs were moving like mad, he stayed in place – just like what happens in the cartoons.))





Speaking of pictures, only two pictures were saved by the people who took the publicity shots of Gary for the news article. The one they put in the paper is one of those pictures, but the one they didn’t use I think is the better photo of him. Here it is, above. (Notice me in the background trying to skulk out of the picture ;-)).

All for now.