A Spastic Night

Thursday, April 8

9:15 am

I went to sleep shortly after finishing my previous entry and snoozed until they came in at two o’clock to do my catherization. I went right back to sleep after that. But then I started having a bizarre and realistic-feeling dream that I was having severe muscle spasms (which I probably was) and that the nurse still needed to come clean me up after the catheterization. In my dream, I was confident that they would come back to clean me up because they were up for a Good Housekeeping award and couldn’t risk a negative point on their application. But I was kept waiting, and in dream time, the waiting continued until almost six in the morning. By that time, I was having pretty severe spasms in real life, and I woke up enough to ask Siri the time. It was 2:31, and I realized I had only been sleeping a few minutes. So I hit the call button.

The nurses came in, and they were visibly concerned by the severity of my constant muscle contractions. Many of the spasms were full-body; others were contained to my legs, lower back, and occasionally arms. There was nothing they could give me without authorization; I’d already taken all the baclofen I could have at that point. So they called in the doctor on call, who asked my pain level. I responded that it was a solid 8/10, so the doctor eventually agreed to increase my baclofen dose for the night. We then had to wait until the order went through for the pharmacy to release it—another 20 minutes. During that time, I was able to get my mind collected enough to start doing some self-hypnosis relaxation, so that the spasms were occurring less frequently and maybe even a little less severely. Still, it was a relief when the medicine arrived, and I was eventually able to go back to sleep.

Aside from an early catheterization and scheduled medication administration, I was able to sleep for a few more hours. At one point my head dropped off to the left, like it had last Friday night when Christine was in the hospital with me. My neck must be healing, though, because although it caused some soreness it didn’t result in nearly the kind of pain I’d felt then. They gave me ibuprofen and heat pads, which have helped enough that I almost feel normal now—or, at least, like my new normal.

One positive thing about the night is that I realized my postnasal sinus issues have completely disappeared. I don’t wake myself up snoring anymore! I think it’s because Sheltering Arms is a brand-new hospital with better filters.

Dr. Miller and Dr. Nolan came in together this morning. Dr. Miller was personable and almost fun this morning. He made me grip his hands and remarked, “Show off!” Today I can move my left wrist much better, which was previously weaker than the right, and there are certain other movements in my right arm that are stronger than they were yesterday.

Here is my schedule today:

• 9:30–10: Recreational therapy

• 10:30–12: Physical therapy

• 12:30–1: Lunch

• 1–2:30: Occupational therapy

Then I will need a nap!

9:00 pm

The one positive aspect of having severe spasms last night was that a couple of them went down the shoulders and arms and hit the fingers, making them spread out. Spreading my fingers is something that I have unsuccessfully tried to do since the day I had my accident, and the couple of spasms that splayed my fingers almost felt good. When I woke up this morning, I found that I could voluntarily spread my fingers a little bit on both hands, which I had not been able to do at all before. It’s a function that I’ve been asked to attempt every single day until now, and the most I’ve been able to do is move my pinky a barely perceptible amount. This is a very exciting movement, because it means that some of the fine motor skills are likely to come back in my hands.

I had no idea what a recreational therapist was before this morning. Her purpose today was to discover what I like to do—games, hobbies, activities. We talked about how Linda and I played gin and bananagrams a lot during COVID, and we like playing boardgames with the family. I told her all about the Coogle Family Fun Farm, and we talked about my woodworking quite a bit. She’s going to bring me some sandpaper and plywood and let me practice sandpapering. (I’d hate to tell her I use an electric sander.)

When Brian came in for PT, he got me in my wheelchair and took me to the third-floor gym, where there was a large, padded bench. I sat on the bench, and he had me lean as far as I could to the left and come back up, then lean as far as I could to the right and come back up. He probably had me do this 15 times per side. Most of the time, I got to where I could touch my elbow to the pad and come back up. When he told me I was done, I did two more on each side. He then had me lean back until I touched his hand hovering behind me and then come back up. It’s kind of like doing crunches. I told him I’ve always hated doing crunches, but I did one more than he instructed me to.

We then went to the big CORE gym and Brian put me in the harness that is attached to a track overhead. While in the harness, which was initially set to support 26 pounds, I practiced sitting and standing up. He put a big mirror in front of me while I did this, so that I could see where my feet were and adjust, which he said helps my brain figure it out. After I had done that three times, he told me we were going to do it 20 times in total. Like hell we are, I thought. But I did it. The exercise was not just about standing up and balancing but also about sitting back down with as much control as possible, learning to keep my weight forward instead of flopping back into the chair. It was a hard workout for those thigh muscles that have been cramping all week. On the last few, he lowered the harness support from 26 to 10 pounds. Several times when I stood up I beat the harness, so I essentially had all my weight. After we did 20, I looked at him and said, “I’m not doing 21.”

Brian then had me use my legs to propel my wheelchair out of the gym, down the hallway, and to the elevator. When I got back to my room, I asked him to put me back in bed so I could fit in a quick nap. I think the extra baclofen I took last night may have made me more tired than usual this morning; throughout my morning therapy, I’d just wanted to take a nap.

In the afternoon, my occupational therapist took me down to the stim bike I had pedaled yesterday, but this time she put the electrodes on my arm muscles and instructed me to use hand pedals. We did the same sequence of testing the minimum and maximum currents that I had done with Brian yesterday. To turn the pedals, I didn’t have to put much effort into turning the crank; rather, my hands were tied to the pedals and the machine was doing the work for me. The point was to make those muscles fire at the right point every time, giving feedback to both the brain and the muscles. I did that for 16 minutes while chatting with my OT.

When I got back to my room at 2:30, I got back in bed and made a couple of phone calls and took a half-hour nap until my angel of a wife flew in. We were busy as usual trying to get everything done before visiting hours ended at seven—catching up on my emails and work messages, eating dinner, and filling her in on my day.

My sister Sharee wrote today that she looks forward to every step when YET turns into NOW. So do I.