Wednesday, June 30
My badante gives me foot massages a couple of times a day. They aren’t therapy, they’re just rubs using mustard seed oil. I’ve been urging her to do something closer to yin tui na, and today she finally made the commitment and just held the feet and ankles, made them feel safe. I fell asleep after a few
When I woke I finally understood the characteristics of limp (as opposed to weak). I was blissfully unable to move, couldn’t find my legs or abdomen or back. Everything felt so safe and cocoon like. My badante oozed me to the edge of the bed, but I could barely sit, let alone stand. She had to leave shortly after that, so a line up of friends took over for her, and an hour or two later I was able to stand and make jerking steps with the walker. The bliss wore off, sleep took over, but I am left with the sensation of having experienced something significant to my recovery.
Thursday, July 1
Day two of real limpness, of being doubtlessly limp. It still feels good, but is also a bother. Every move is a huge organizational effort, every question a riddle. I’m grateful that sleep hovers so close, most of the time. It gives me something to do I can actually accomplish.
Friday, July 2
Limpness continues. Then around noon, my badante started to melt down. Her downward spiral only worsened as she became repetitive and incoherent, until she was talking loudly to herself without a pause. I called Bruce. Claudia called my badante. Between them (and on Michael’s advice) he got her keys, we paid her, and managed to get her to leave without further incident. It was as if she had forgotten her meds the night before (entirely possible). I felt bad, I like her, but there was no way back to comfort together after that. Katrin came at five, offered to help find another badante. Katrin’s treatment passed like a dream. Sleep at night was interrupted and in brief stretches.
Saturday, July 3
Limpness continues. Spent the later part of the day writing requests to friends for badante candidates; the most time I’ve spent working at the computer in months. My gait remains soft instead of rigid. I’m encouraged. Sleep at night very spotty, no comfortable position until 05:00. Even then, did not sleep well or long; attempt at vibrating chair failed. Finally slept deeply at about 07:30. Such a dramatic change from just a few days ago when I was sleeping my life away.
Sunday, July 4
Would have been difficult to get out of bed were Lucky not here just in time, I was so limp. Needed more sleep, so chair napped for about an hour. Lucky helped me up when he left, then I dealt with correspondence for bandante search, and napped for 90 minutes (and well) on bed, always on my back (no RLS). Very tricky getting up, imagined my way as best I could, and eventually made it. Why I can’t sleep as well as that on my back during the night, I do not know. Napped again at 15:20 for less than 30 minutes – seemed like hours – also a challenge getting up. More work wrapping up badante search, grew tired and a bit nervous from all the activity. Another profound nap of about 40 minutes, woke feeling my mother’s loving presence and missing her terribly. Getting out of bed still difficult, walking a bit easier, and the gait remains soft. I re-read chapters Recovery from Parkinson’s on Limpness and Dyskinesia and understood them for the first time. Experience fosters clarity. There are subtle improvements in being able to initiate movement. I’ve not felt massive discomfort in a week or more – or rather only brief periods and of less intensity. Imagining movement is still largely confined to the next step or gesture, I fall asleep trying to do anything more, but no effort is wasted. Today sitting and rising have both been more graceful and solid than in the past few days – though to be accurate, changes of all kinds happen hourly, not daily.
Monday, July 5
Went to bed around midnight and slept in short shifts until about 05:00, transferred to vibe chair and was totally out in minutes for two hours. Returned to bed, and using the formula “commit to sleeping in whatever position I land in” slept until 11:00. The recovery symptom of sleeping 18 hours a day seems to have passed, and I’m not sure what’s taking its place. Am able to walk unaided this morning, and once the foot pain wears off (usually after a few minutes) the gait is not too ugly. Posture is wretched, but I’m slowly able to rise into it. I met Darina, new badante of unknown duration, at 12:30 (she’s great). I didn’t realize how symptomatic I was until there were guests, or… social pressure has that effect; voice hoarse, tremor more apparent. But walking drew applause from Katrin, my physiotherapist. Napped in vibe chair for more than an hour until about 15:15. Woke groggily, weather very hot. A fear of failure (of my recovery) is gone; I feel both more confident and that the process is not entirely mine to own, if I can stay connected to Friend and enjoy the unpredictable details as they mysteriously appear. The day ends with my gait less fluid than earlier, but still softer than before. Getting up and down is also clunkier. The middle of the day was stuck in a blue chair to endure the heat, perhaps all I need is to move around and imagine dancing.
Tuesday, July 6
I slept relatively well (with several interruptions) from midnight until 06:30. I fixed breakfast on my own, and was ready to go (for shot number two) when Darina arrived at 08:00. She’s bright, sunny, brave, and forward thinking. We left for the vaccination center at 08:30, arrived about 20 minutes early, were taken right away by a group of wonderfully friendly, helpful people, and were back home by 09:30. Then Darina gave me a foot rub, gentle, enjoyable and sleep inducing. I woke from the automatic nap so limp I could only imagine getting up, but once moving around, I felt stronger. And thus the day unfolded, waiting. For shiatsu, for sunset, for the big event of the evening – opening windows to the Giovenale breeze, or at least to what remains of it after the zigzags of the medieval quarter have their way with it. Shiatsu was, as usual, astonishing. I told Michele that I was aware of and working on neck tension. He said afterwards that my work has paid off, that the neck was looser, then to prove it, he worked on neck and shoulders for five more minutes. I felt like a thief. Now he’s off to work outside of town and sneak bits of vacation, but if he finds himself in town with time on his hands, he will let me know. I almost cried. Then he instructed me in a technique for imagining movement immediately before it happens, an exercise central to recovery, and one I’ve been having difficulty with. One waits for the evening breeze and it comes delivering treasures.