Tuesday, October 18
T’was a beautiful morning. Piazza del Duomo was full of sun and people. And Paolo Zanzarelli, the classical pianist, had his concert grand set up in front of the Duomo to provide a musical underscore. Then just as we were starting to walk, bells rang out.
I asked Roman where they were.
“Maurizio is returned from vacation!”
Maurizio is the bronze knight who was put atop the smaller clock tower to strike the time for the workers who built the Duomo. He has been inactive for at least a year.
And for our final lap on the sagrato, Teo the Tabby Cat followed us.
As we came down the ramp, a police car pulled along side the piano and parked. He rolled down his window, and as we passed I could see that his eyes were closed.
I walked well, by the way, seven laps without even realizing it.
This evening we circled the Albergo Reale twice, and it was so much easier than ever before.
People are congratulating me, and I love it. But there is still a lot of repair that will happen before movement is fully restored. (I’m not complaining.)
Wednesday, October 19
I slept eight hours last night with a one hour break in the middle. During that hour, walking and sitting were better than usual, and so was typing. Also more prominent was nasal discharge, so I took two demitasse spoons of NyQuil to help stem the flow. It worked. But this morning, walking and typing are back to being awkward, and little things that were calmed or absent during the early morning break (like the mouth and tongue tremor) were back.
So, most of the afternoon I sat, and I never became uncomfortable (an hour sitting has been my limit). When I finally got to my feet at 16:45, walking was slow but steady. Typing now is decent. I still feel assured. So, perhaps this morning’s backwards movement was the result of cold medicine at 05:00.
This evening’s walk around Grand Albergo was unremarkable in all ways. I have to be careful not to let my mental habits throw out – as imagination – all the progress of the last ten days.
Thursday, October 20
A fabulous garage walk this morning, controlled, relatively relaxed, and in pretty good form. (“Fabulous” is my own highly subjective assessment, Nureyev I’m not.) (Well, okay, I never was a Nureyev, but today compared favorably to what I could do a year and a half ago.)
The afternoon was a total space-out. I don’t know why. That state of mind blended into the evening walk on the sagrato which was otherwise pretty good. Changing direction on my feet and initiating movement has been easier today than they have been in a year and a half. (Easier, not easy!)
Friday, October 21
Walked the garage this morning, did well but ran out of oomph at the end. Could barely walk afterwards, though I took the three lobby stairs so well that Roman teasingly suggested that I forego the elevator. Energy recovered moving around the apartment. Then I napped for twenty minutes while sitting upright, and woke immobile. Staggered to Roy’s car, and recovered during the drive. The walk from car to studio for Alexander was strong and relatively smooth. I took the six steps up without difficulty. The lesson was good, but a lot of work. Afterwards, I could barely walk back to the car, and once home, could barely move. I had guests for two hours, movement continued difficult. The evening walk around the hotel was smooth, and relatively relaxed. After two circles, I opted for a third, but a quarter way around I could feel the dopamine deplete, so we called it a day. All through the day whatever the quality of movement, I felt in control and assured; there was no panic or elation. That was a very good thing, indeed.
Saturday, October 22
I was wired last night and therefore slept poorly, and that made the morning walk an on again off again proposition. The afternoon featured a couple of timed naps, and much confusion with a friend trying to find my apartment (never did). That and some incipient boredom left me emotionally on edge, but it lurked threatening and never spilled over. The evening walk was steady, calm, and controlled until I suddenly ran out of dopamine in the middle of the fourth lap.
I am reminded of how important it is to actively counter the propaganda of PD’s being incurable and neurodegenerative. Falling into that habit sets up a “clinging to life” struggle which sends me right down the Pause-like symptoms rabbit hole, and results in a downward spiral into self-induced Pause-land. (Forgive me if that sentence is too jargon-y to be sensible, it is meant primarily for fellow travelers.) In other words, it is essential not to be frightened by seeming setbacks. PD is an electrical not a chemical imbalance, and recovery is therefore prone to be quirky. But progress is real and the zigzags do not invalidate that reality.
Sunday, October 23
Sleep was back to being sound, last night, and even with a very slow start, this morning’s sagrato walk was steady, controlled, and in good form. I took a timed nap (25 minutes) after lunch and woke to zombie immobility that took longer than the nap to recover from. That doesn’t happen when I wake during the night after two or more hours sleep, nor does it happen in the morning
The wake and shake phenomena, however, seems to be on the wane. Dexterity seems pretty good (with the exception of zombie-ness) as does directional change and initiation of movement (same exceptions).
I went to Maestro Cambri’s piano recital at Teatro Mancinelli this evening. It was magnificent. And I was in the wheelchair for a total of three hours without discomfort. I tried to stand for the ovation, and I did too, but couldn’t gain my balance to applaud at the same time. What a thrill, though, to be back in the Ridotto (reception room, see this week’s photo).
Later, movement became difficult again, and a feeling of being under water (best I can describe it) prevailed.
(from Recovering from Parkinson’s by Janice Hadlock)
“In addition to becoming limp during the time of day when a significant amount of healing was happening along the path of a given channel, a person who is recovering might become limp for a short while if/when the brain’s dopamine supply temporarily runs out. During these fairly short periods, which occur when there is no emergency on the horizon, the person feels limp and relaxed – which is how a person feels when dopamine is sufficient for consciousness but insufficient for motor function. Over weeks or months, as the recovering brain steadily increases the amount of dopamine in response to need, these short-term, temporary events become further spaced apart and last for shorter durations until, at some point, they never occur again.”
Monday, October 24
My personal theory as to why there are zombie naps is that with real sleep the brain prepares for being awake and a part of that is release of dopamine, which is inhibited during sleep. So, from a nap I wake dopamine depleted, or in my highly technical description, zombie-like.
As to yesterday’s quote, two or three months ago that depletion/regeneration cycle seemed to occur over a period of days instead of hours and minutes as noted above. These days, it seems to occur over a period of hours. Though because the recharged periods involve improved movement but not yet free movement, perhaps there are cycles subtle enough that I don’t notice them.
Tonight’s walk was automatic but not perfect (posture was wanting, my arms seized up, there was minor dragging of the left foot), and lasted about thirty minutes before I lost steam. Recovery took at least ninety minutes, but that’s better than several hours.