NOTE
While there are steps towards recovery and repair, they are so quirky in their production and difficult for me to grasp (and even when there is clarity, difficult to describe) that I am boring myself with these reports. I can well imagine that these must get boring to read. So, thanks for keeping on. I will do the same but may change the how and when.
Monday, December 12
Nothing was quite as strong or as fluid as it has been, but still markedly improved over say a week ago. I had a booster shot this afternoon, and it left me a little light-headed, so we scratched the evening stroll.
Tuesday, December 13
The booster also knocked me out, and this morning started on that note as well. But the morning walk in the garage was much stronger than I expected, and the afternoon was slow but many of the discomforts I’ve become used to were absent. Typing was close to normal, and I mean normal, not normal for these days; close, not there, but close.
Wednesday, December 14
I ran out of steam after the third garage lap this morning and it was several hours before I regained better than slow mobility. Typing is good to very good, but placing the cursor with a mouse is agonizingly difficult.
Thursday, December 15
I feel lighter these days, in every way.
Friday, December 16
I continue to be hungry a lot. Have been sleeping well last few nights. Earlier promises of recovered typing are proving to be wobbly. Today I have been walking well and feeling odd, like parts of me are relaxing and other parts are not sure how to adjust.
Saturday, December 17
I’m walking around the apartment more swiftly and easily than I have in a long time. Typing is also improved, again (for now). I’ve been sleeping well, having much less trouble turning over. That said, there is still some flux, nothing stays exactly the same over a period of hours or days, but the trends are positive.
Sunday, December 18
A normal gait involves the heel being first to hit the ground, then a roll through the rest of the foot. For several years I’ve been unable to do that, hence the shuffle. Last night, walking at home, the gait corrected itself. This morning while walking the sagrato, and only after a dozen or so meters, Iryna noted that I was “picking up my feet”. In other words, my gait was normal. It was also largely automatic, and pretty consistent. We walked about a kilometer. I was tired afterwards, but the gait persists, even at home and after a nap. Equally gratifying was during all that time walking the sagrato, my arms didn’t painfully contract as they usually do if I don’t pump my hands. This is huge.
The evening walk was not as consistent, and I was not feeling grounded, but the arms stayed relaxed and pain-free. I think I ran short on dopamine this morning, but didn’t recover fully for the rest of the day.
Monday, December 20
As good as I felt yesterday morning, I feel lousy today. Trying not to follow the rabbit down that hole! (I didn’t)
Tuesday, December 21
I keep hoping for another day like Sunday, but it is not to be. The problem, however, with the daily log is that changes happen by the minute, so the most sparkly thing gets the attention. Typing is rather chaotic.
Wednesday, December 22
Another day like Tuesday.
Thursday, December 23
Feeling a bit looser and in the flow. Roman thinks that when I feel especially good, like I did on Sunday, that I have a tendency to overdo. Maybe he is right. Don’t know how that squares with Recovery and Repair.
Saturday, December 24
Today friends stopped by for a Christmas visit. I felt great and relaxed until the subject turned to PD, then even talking about recovery I began to feel symptomatic. Friend says that I go into Pause state of mind when that happens, then as symptoms get worse, I go deeper. On my walk, I realized how important being relaxed is for the same (non-feedback loop) reasons.
Sunday, December 25
We walked Piazza Gonzaga (asphalted) five laps, morning and night, unassisted.
Monday, December 26
Roman organized a team of Ukrainians to take me down into the nativity village at San Giovenale, wheel me around to points of interest, and get me up the very steep hill going out. Best Christmas present ever!
“Suddenly, the long years of feeling somehow apart from others, either alone in the universe or trapped in a world with what he imagined to be a silent, judgmental God, are ended. In many, many cases, the person perceived his previous mental attitude as sulking and petulant, even infantile. During the epiphany, he decided to stop sulking and – usually sheepishly accept the love and membership in the human race that he has been spurning.” (from Stuck on Pause by Janice Hadlock)
Tuesday, December 27
After four and a half hours sleep I woke hopelessly energized, and because I kept trying to sleep anyway, I got out of bed four times. Getting up on my own has been an enormously difficult challenge for over a year now. Last night, I got up without thinking or strain and in complete control, all four times! This morning I ran out of steam on the fourth garage lap.
Wednesday, December 28
Last night in bed made Tuesday night look like I’d taken a sedative. An hour and a half of sleep framed both ends of five hours of trying. I got in and out of bed a bunch of times, half were okay, half were borderline catastrophic. Walking today offered glimpses of grace and relaxed muscles in motion surrounded by chronic awkwardness.
Thursday, December 29
Last night was a little better than Tuesday, but still a reprise of the sack of ball bearings body. Walking has been tiny islands of grace surrounded by turbulent seas of awkwardness.
Friday, December 30
Sleep was closer to normal last night, also better movement in general.
Saturday, December 31
Walking today looked and felt impossible. For the first time in months I had to use the walker indoors, and outdoors my feet dragged and posture was extremely difficult to maintain. However, internally I felt exceptionally good. The town is full of jazz fans and the air is very festive.
Sunday, January 1
Internal goodness continued. Walking was difficult but only when I made a conscious effort to hold good posture. If I let my head slump forward I could walk more easily. The town was the fullest I’ve seen!
Monday, January 2
The morning walk in the garage was exceptionally good, even when posture was also good. There seems to be a cycle going on, but I can’t quite see what it is.
Tuesday, January 3
Things have been way up and way down since my last report. What has remained consistent is that internally I have felt solidly good to great. Slept really well.