Tuesday, November 30
I took a small sedative around midnight and it did indeed put me to sleep, and in fact it is still working well after noon. I’m grateful for the sleep, but am less sure about the tradeoff.
No walk this morning. Instead we went to Giancarlo’s where he fixed an apple strudel so we could follow a tradition forcefully abandoned at least two years ago. He’s a wonderful baker and a kind man.
I never got over the sedative today, it made me woozy and wobbly and terribly insecure. So, Yuri picked up a homeopathic sleep aid that I’ve used before with only good effect, and I was able to begin taking it at dinner. No walk tonight, too unsteady plus my ankles need rest.
Wednesday, December 1
The second session of Alexander technique was today. Monika methodically opened up areas of my body that were tight (almost everywhere) but habit pulled most muscle groups back into place minutes later. Still, it was instructive to see that I could relax on command.
Then yin tui na this afternoon on the right shoulder. It was hot to the touch immediately and caused me to feel suffocated. After several minutes I was aware of being thrown into a pool when I was about ten, and before I knew how to swim. I requested that Candace ask me aloud if I felt that my life was in immanent danger. I answered with force, YES. That was a first.
It was a very strange day all in all. Last night I was able to pace the hall – not easily but possible. I woke up at eight feeling like I’d been encased in a block of concrete, even putting in my hearing aides seemed impossible. By the evening walk I was hardly able to move, yet a week ago I had five minutes of complete recovery. I know, that’s the weirdness of recovery, but today I found it hard not to be discouraged.
Thursday, December 2
I didn’t really sleep until 04:00, but when I did it was sound and pleasant. I woke shortly before eight, and we did the morning routine, but when it came to a short rest after leg massage, I asked Yuri to let me be and slept until 10:30. I semi-slept during the activities of the half hour after that before I gratefully collapsed into the recliner for a nap. But a nap was not to be. The right leg became restless all the way up to the thigh, and the right ankle hurt even at rest. We skipped walking, it just seemed too hard.
After lunch I did nap, so deeply that 23 minutes seemed like hours. Then I meditated, and napped again for two 23 minute chunks.
It is raining, I’ve been weeks without a shower, so we scratched the evening walk in deference to hygene, and I feel two kilos lighter.
Friday, December 3
After sleeping for a bit more than three hours last night, I woke to find my body in what is an essentially impossible position to get into while awake. I have no memory of the effort, but it was like a miracle, as for the past several months or more, I have been limited to sleeping on my side at the edges of the bed. What is more, I was delightfully comfortable. Since sleep has become a constantly shifting challenge, I’ve been envious of the bedding in movies and how easily the characters find ease. Well, look out Meryl, Russell, and Robert, I’m determined to re-enter your league.
Getting out of bed after first sleep was five minutes to a sitting position, and ten more to stand (I timed it, I actually did). But once I got through that, I was able stand, walk, and do stretches; not gracefully mind you, but at least it was recognizably human – or at least I think it was.
After an hour, I entered second sleep for five hours straight with the aid of homeopathic drops. It could be chance, but they seem to help.
The morning and early afternoon passed. Candace did yin tui na on my ankle at 15:00, and despite our having spent the whole time chatting, it seems, so far, to have reduced the pain. Friend told me this morning to rest today. I’ve taken that advice quite seriously.
Saturday, December 4
Sleep patterns persist. I tried walking in the garage both morning and evening, and was barely able. Indeed, even walking during sleep intermission early this morning was without ease. The ankle pain is reduced, however, so at least that part of the plan is working.
I want to change format of these daily reports, to allow them to be less about sleep and walking schedules, more about the colors of being Orvieto’s newest (hopefully temporary) invalid, but the effort typing involves keeps me from it. However, there is progress just in my wanting to create in a more artful manner.
I just read an article on the website Out-Thinking Parkinson’s that includes a long list of Parkinsonian non-motor symptoms, and while some were familiar from several months ago, none currently apply. It is good to be reminded, especially during times of seeming regression, that progress has been made and that rebuilding takes its own time.
Sunday, December 5
First sleep was deep and satisfying for three hours starting at about midnight. I didn’t enter second sleep until 05:30 or later, then slept well until Yuri woke me at 09:15. I stumbled through the morning routine half asleep. When it was over around 10:45, I begged off walking and slept another hour and a half in the recliner. Then Yuri woke me for lunch, but even though I felt like sleeping again after, restless legs had kicked in by then, so I gave up. Although I wouldn’t object to sleeping in more congruent stretches of time, I’m grateful that the sleep I get is good and the total time spent asleep is sufficient, even if oddly distributed.
The afternoon passed pleasantly and groggily.
The evening walk was at the garage, three sloppy laps. Moving around at home even sloppier. Watched television, went to bed with hope and terror.
Monday, December 6
During a two-hour gap in sleep early this morning, I did some simple exercises for the appendages and found them easy and fun, if not elegantly executed. Right after rising, movement was not bad. An hour later, I found myself clumping. The walk in the garage was a disaster, as was all movement through lunch. I rested, and movement evened out, some. Symptoms change hourly with what seems to be no cumulative effect.
Okay, I’m gonna get weird (as if that’s news). For several years I’ve been describing PD as a rotten, old jacket that needs to be taken off and thrown away – I just don’t know how, for whatever reason.
Well, I’m preparing for this evening’s walk. I go from the studio to the bedroom. My gait is smooth, even if slow, and my body feels loose (relatively speaking). Yuri changes me into outdoor clothes (see “a character from Downton Abbey” of several weeks ago) and that goes smoothly, as well. I take the walker to the front door, my gait provokes optimism, I feel solid, even confident. I spin the walker 180 degrees to position it for our return; not a problem. Yuri takes my peacoat from the wardrobe. I extend my arms and pivot. The coat slides into place, my posture crumbles, my balance falls into a pit, my legs feel heavy as lead, my voice cracks – a high school memory of a scene from ancient Greek tragedy, Jason and the fiery cloak, pops into mind; very unpleasant pins and needles cross my arms and chest.
I told you it would be weird.
The recovery from the coat part isn’t as defined. The coat comes off, I shuffle to the bedroom where I am changed into indoor attire. I nearly topple when Yuri tucks my shirt. I shuffle with the walker back to the studio and by the time I reach my desk a degree of stability has returned. An hour later I am barely able to get to the kitchen for supper.
So, what is this coat and how do I remove it? Answer in comments!