Tuesday, June 7
The discomfort underlying the poverty of movement is back, though more lightly than before. This morning’s walk was pretty solid until the sagrato was swamped with about sixty eight-year olds. They were lovely kids, but I don’t take to that much random movement.
But here’s the thing; I feel lousy today, and when I feel this bad, it’s because typical PD symptoms are worse. Difficulty initiating movement, changing direction, finding my mouth when drinking from a glass, tilting my head back, walking in a controlled manner, maintaining posture, so forth. I’ve had episodes when one or more of these seems to be better, but the improvements don’t seem to last.
I ask Friend about Pause quite often, he assures me I am not stuck. Today he pointed to my fall ten months ago. I went into Pause when I fell and felt neither pain nor panic, shook violently in the ambulance, and was – according to Friend – out of Pause by the time I reached the ER. He tells me I’ve not used it since, but have used sympathetic mode for emotional upsets.
Maybe this is Blocker behavior, but when I feel like I have these past couple of days, I wonder if I’m just making stuff up according to what is expected for Recovery.
However, I just found this quote by random search from Janice Hadlock’s book, Recovering from Parkinson’s:
“Recovery symptoms are not a straight line. But to the extent that there is some degree of predictability, one can assume that return of fully normal motor function might be one of the very last things that occur during recovery. What might occur prior to a return of healthy motor function is resumption of nerve sensitivity, spastic, infantile motor function, back pain, heightened sensitivity in nerves that go to the bladder, exhaustion, and very often, an overwhelming, new sensitivity to heart feelings, and so much more.”
Wednesday, June 8
Although sleep was interrupted for two hours by temperature issues, I woke feeling rested and strong. So much so, that on the way out an hour later I felt prompted to report that my legs were much better this morning. No sooner had I said that than my steps turned awkward and I began to shuffle. We did a short walk in the garage so I could save energy for an Alexander lesson at noon, and while there have been worse, none of it lived up to the promise of those morning steps at home.
I slept deliciously well after the lesson, but post nap typing was a cruel joke.
We had a fabulous passeggiata. Walking was not great, but I ran into lots of friends I’d not seen in months.
Janice says I may be resisting Recovery. I think she may be right. Friend says my dreams of Santa Cruz are related to wanting to travel again rather anything therapeutic. I think he may be right.
Thursday, June 9
Sleep interrupted again by temperature and fresh air issues. That I was stunned probably contributed to an awkward morning walk in the garage. A nap made things worse, so I took another nap after lunch and woke barely able to move, but otherwise quite happy.
The rest of the day was a blur of mixed signals.
There was one ahah! moment during the evening walk. I’ve been trying to force the striatum to wake up, when it really is a matter of letting go
Friday, June 10
I slept well until 04:30 then not again. The nightclothes I have are either too thin or too heavy for the 23 degree internal temperature, plus I was energized until about 07:30 at which point it was useless to try again for sleep. But something good happened overnight. Everything this morning was easier, more fluid, not by a little, by a lot. We walked the garage, and I went solo on the first lap, a breeze flowing through my heart. And this after two weeks of very difficult movement. I felt so lacking in fear that I almost wept.
Then after being home, napping (much needed) and so forth, I felt the heart return to “normal” and getting around the apartment lacked this morning’s several hours of surety, so I don’t know what to expect this evening.
Waiting for the evening walk, I became restless again, as I felt this morning; an eagerness to move. But, the evening walk, while better than it has been these past weeks, lacked the heart/pericardium energy that was so present this morning, which seems to have arrived on its own, and I don’t know how to call it back. Regardless, it is a good sign and presumably will happen again.
Saturday, June 11
I spent a large chunk of time last night (from about 03:00 to about 06:00) trying to find a comfortable position for sleep, only to rediscover that if I simply threw myself onto the bed in whatever position I landed that I was asleep in minutes. So by the time Roman woke me I had had about six and a half hours, total, a respectable rest in my world. But I kept falling asleep, eyes open and in the midst of activity as if I had just finished a twenty-hour journey from New York. So, after getting ready for a walk, we agreed that it would be better for me to sleep, and I did. In the recliner for two hours, then lunch and an hour more. Interesting though, I felt good the whole morning, I just couldn’t move. And I had flashes of heart energy that did not give rise to mobility, but were powerful just the same.
The evening walk in the garage was better than I expected it to be. I had what may have been an insight, however; the heart energy that took me over the top yesterday morning was pure unattached love. Love for creatures and place is great and important, but the breeze moving through my heart is what will cleanse me and make me well, and that knows no object.
Sunday, June 12
A good morning walk in the garage. Then Natalia wheeled me into town to look at the hundred or so vintage Fiat 500’s gathered in Piazza del Duomo. All that and the lulling effects of wheels on cobblestones meant that I could not nap soon enough once home. And except for the actual sleeping, I’m very uncomfortable today. Last night I woke at 03:10 feeling like my body weighed a ton. I got up walked a bit, including a series of quick meditations, went back to bed and slept well for five hours, feeling light and relatively normal when I turned over, only to return to lead once on my feet. It’s often like that. I don’t know why.
This afternoon the city joined Museo Claudio Faina to offer the Ukrainian community a free guided tour followed by a lecture and a fabulous finger food buffet provided by Bar Montanucci. I was invited too, wearing the traditional Ukrainian shirt Roman gave me for Christmas as a disguise. Everyone was so kind.
I came home to a message from Ted of the Parkinson’s recovery support group reporting that on Friday he had several hours of freedom from symptoms, and enjoyed more fluidity of movement than he has had for a long time. Rejoice!
Monday, June 13
It was a good walk on the sagrato this morning. Then I took a recliner nap after lunch. When I wake on my own I tremble, full-body now, for about thirty seconds. Waking from a nap is seldom a clean break with sleep, so it is a series of trembles – rather tiresome. And afterwards I feel utterly helpless; walking is hard, typing very unpleasant. Today it took about an hour to claw my way back to semi-comfortable.
The evening walk was a struggle, but there were two or three laps (of seven) that hit upon something worthwhile.
I want to let go of this tension… call that surrender, opening the heart, taking off the rotting jacket, dropping the old habit, or what you will… it’s what I need to do.