Tuesday, December 28
I slept in chunks, but there was very little time or activity separating them. Woke before Yuri arrived, had breakfast, then after the leg rub took a nap of about another hour under covers. I woke up in a position that I can only obtain accompanied by loud and foul grunting and cursing. I had no memory of how I had gotten there without waking. If I can roll over while asleep, why not while awake?
After lunch I took an absolutely delicious nap of a little more than an hour in the recliner without significant restless leg syndrome and essentially no wooden leg and shaking arms (or distorted vision) afterwards. And I’ve felt pretty loose and happy despite appearances. Also typing is relatively smooth.
The evening brought with it a decision to report honestly but not to dwell on the annoyances. Instantly, I became physically more comfortable. Obsessing on the negative details is an expression of my impatience.
Wednesday, December 29
Around 04:10 I got up for something to drink. I rolled off the bed and stood without the usual grunting, and the walk to the kitchen, while not the symptom free experience of several weeks ago, was smooth, graceful, controlled, and largely without shuffling. I forgot my thirst and did laps. The gait improved over the next few laps as my body gained confidence then settled into a rhythm. It stayed there for thirty minutes before it began to tire.
I secretly hoped for some carryover on the walk between Roy’s car and the Alexander class – the path curves around the building and includes 8 steps – and to be fair there was a slight improvement, but nothing approaching the small miracle I wished for. Alexander was hard, I walked back to the car exhausted.
There was better carryover in the garage come evening, and it lasted four and a half laps. Then the brain suddenly grew tired, so we stopped.
I love those periods of clarity like the one this morning. They keep me going.
Thursday, December 30
I slept in chunks, had breakfast and slept another two hours, all of it ambrosial. Walking is clunky, so far today there is no echo of yesterday morning’s half hour of nearly normal. That’s okay, the brain needs to recharge. Still, I am hoping for a brush with brain health again sooner rather than later.
Just to note, RLS has been essentially absent the past few days, as have the wooden legs and shaky arms. I make no declarations, there is nothing to assume they won’t be back, but for the record. Also for the record, typing today is not so bad.
I must report something that happened during another nap I took after lunch, also ambrosial. At one point the usual dream imagery was interrupted by a female presence that introduced herself as my mother. I had a close up of her face, and there was a strange resemblance. She leaned in and it occurred to me that I was dying, and that it was okay. This lasted for a short while, then I returned to my usual dreamscape and forgot about the experience until about an hour after waking. I checked the book, Recovering from Parkinson’s because I recalled something similar in one of the patients’ experiences, and found a phenomenon called “brain shift” that described pretty closely what I’d just experienced. (for those of you who have downloaded the book, page 342).
Since we’re catching up, pins and needles continues but in a much milder form, mostly in the face and hands. By chance when looking for brain shifts, I read a description of mid-recovery tremors that fit my current experience; that the tremors, when they manifest, are only muscular, they lack a brain component, and are therefore without that deep sense of disquiet that I associate with them historically. The internal tremor is gone.
Another change that has come to the surface in the last day or two – when a negative or judgmental thought passes through my brain, I am able to let it pass without attaching myself to it or becoming fascinated. An early gift from that gift; I don’t need to play to the largely imagined skeptical peanut gallery. Know my truth.
Friday, December 31
The day has been about sleep until 14:30, when I paced the hall for twenty minutes to make sitting tolerable. Then I read Majesty, a play I wrote over a span of many years but had not looked at in two. If I can fix the opening there’s a very odd play about Emperor Norton I, a very odd San Franciscan.
Starting Wednesday my left knee occasionally gets a stabbing pain and sometimes threatens to buckle. It was injured in 1971 but never really bothered me. Nothing bad, just strange, and to be noted. I’m desperately tired of insufficient movement, but managed to put away a dozen garage laps this evening, some of them in relatively good form.
Typing is terrible.
It is a struggle to stay awake. And remained a struggle until midnight when I suddenly became super alert. I have to reset my clock. [The alertness didn’t last.]
Saturday, January 1
Memories of Christmas trees and the Rose Parade on television.
The last stretch of sleep came in a good four and a half hour package, so we got to the garage early. But mobility was bad, and I wore out after four laps. Then I slept two and a half hours in the recliner with only the slightest hint of incipient RLS that never came to fruition. Another peaceful forty minutes followed lunch.
I had a Zoom meeting with the director and artistic director for Soup. My voice was clear and strong during and after the meeting and until bedtime. Right after, I was so energized that I did twelve garage laps before I even thought to ask Yuri how many we had done. Then I worked on targeted sections of the play, typing not perfect but not terrible.
Yesterday, I could hold my pee for three hours, tonight I’m doing good for an hour, and typing is a disaster. Also very uncomfortable watching TV. And moving around the house is awkward. Friend says this will pass. I hope so. The worst is that I feel helpless to do anything to improve.
Sunday, January 2
I slept from 01:30 to 14:30, not exactly straight, but nearly, and now that I’m writing this I realize that I’ve been sleeping more or less on that schedule for several days, now. Massive amounts of sleep is a recovery symptom, one that I’ve experienced before. And I believe that this one began shortly after Wednesday morning’s period of normal walking, which makes sense. The brain is repatching itself.
Monday, January 3
I slept the day through except for ten very sloppy garage laps.
One very significant change, however. For several years finding a comfortable position in bed to fall asleep in has been a constant challenge. For the past few nights, not so. I had sometimes reached a workable compromise in that I could fall into a position and freeze – resisting the urge to adjust – and eventually fall asleep. But this is back to normal. I can adjust or not, be comfortable, and sleep well. Believe me, it’s a huge big deal. I hope it lasts!
Knee pain is gone for now.