Tuesday, July 5
From Recovering from Parkinson’s by Janice Hadlock, “When attempting to come out of this [pause] mode, the body often exhibits tremor behaviors, also known as ‘shaking.’”
Whenever I wake on my own accord, I shake all over. If someone or something wakes me, I don’t. The shaking can last ten to thirty seconds, or it can come in waves for a longer period. I can successfully resist it if I try. It is not necessarily uncomfortable, but it can be tiresome when I am trying to catnap and every slight lean towards wakefulness provokes shaking. Around 13:15 I sat in the recliner to nap while listening to forty minutes of chakra-tuning music on YouTube. That auto-followed into videos of various pieces by 2Cellos, and I let them play for another hour. There was no shaking, though at several points it seemed there might be.
Walking this morning was awkward and wore me out. But internally, I feel great. The evening walk surrounding Grand Albergo Real was hard to control at first but got better. Then I joined Erika for soft drink and conversation, and managed to avoid a symptomatic crash despite the heat, my extreme slowness of movement, and moderate discomfort.
Wednesday, July 6
I remembered as I was going to bed last night why I went on about the music in yesterday’s post. When 2Cellos started, instead of “waking” I played the edge of consciousness, still in the lovely part of sleep, but completely aware of the music… in fact, hyper aware, noticing its beauty and structure like never before. I tried again today, and occasionally could get there, but it’s almost an hour after 2Cellos started and I’m still shaking.
Thursday, July 7
I wanted to quote Janice on this, but I can’t find the passage. So, to grasp at its essence: Once off pause, the brain can go through a process of relearning how much dopamine to produce and distribute and to where. So, after a few minutes of fluid movement, the supply may deplete, and will take an hour or two to restore to effective levels. I’m just guessing, here, but if you change those units of time to hours and days, that might explain the cyclic phenomenon I experience with walking.
Today, walking was close to the bottom of its cycle, but interestingly enough, typing is fluid (though my muscles aren’t used to this so my fingers are quickly fatigued). Also, I have been dreading putting my hearing aides in, the precise movement required was sheer agony. Today they went in easily. Also my Italian became more spontaneous; I was cracking jokes all day and better understood what was being said. And all things requiring dexterity became suddenly easier.
Friday, July 8
Dexterity, language skills, and spontaneity continues improved. The morning walk was easier, smoother sooner, enjoyable enough that I wanted to keep walking when it was time to quit. Slept well last night but with a three-hour hole in the middle, but cannot nap this afternoon, nor am I especially tired. My attempts at napping, because they are attempts and shallow, end in shaking.
Janice dropped a hint in her last email suggesting that “in my experience, the majority of people with Type I PD from self-induced pause have demonstrated traits of sulkiness and petulance.” Historically, and in relation to the inconveniences of the disease, I can see that is exactly right and that the sudden openings of the past couple of days have to do with relaxing away from those habits.
The evening walk was not as smooth as the morning, but there were positive aspects. For one, I saw clearly how important it is not to feed the fearful, wary part of the brain, because I enter a downward spiral if I do. In this case courage is not just a noble sounding noun, it is an integral part of the recovery. Courage is to accept that this time walking is rough, and be cheerful. For the other, there was a rehearsal going on for a concert tonight on the front steps of the Duomo; classically-inspired rock. The concert features a small orchestra, several solo vocalists, and a choir. The music was beautiful.
Saturday, July 9
From Stuck on Pause (2022 edition) by Janice Hadlock
“Many readers have been baffled by the way that they keep slipping back into self-induced pause mode, and wonder why it returns after they have first turned it off. […] Using self-induced pause is a mental habit. So long as this habit is retained in the brain cells, self-induced pause – and all the old motor malfunctions that the body has developed to accompany it, such as rigidity, tremor, soft voice, etc, – might resume any time a person employs the mental habit of inducing pause mode. No matter how many times self-induced pause is temporarily turned off, it might be re-employed as soon as a person stops feeling safe.”
So far the newest edition of Stuck on Pause reads a little like a well-crafted crime novel, and corresponds exactly to my recent (and not-so-recent) experiences with recovery – at least those parts that describe the slow version. Today my legs are not so useful. But agility is better (therefore typing), language skills are more available (therefore Italian), and my arms and hands are freer.
There is another concert tonight in Piazza della Repubblica. For me, that is the hardest part of this adventure – not being able to attend live musical events.
Continuing on.
Sunday, July 10
Walking the sagrato this morning was pleasurable again, not perfect but in relatively good form. Likewise typing, and other small things like putting on my glasses, getting up from a chair, moving around the house. On Natalia’s encouragement I discovered that I can lift my hands above my head without feeling like I’m going to fall over backwards. Again, a little thing that is a major event in my day.
Monday, July 11
Walked well this morning, and as is often the case, was dead tired afterwards – by the fifth lap, actually. That means extreme slowness and difficulty speaking with Italian friends on the way home; even with English-speaking friends, to be honest. I slept like a stone post lunch, and was happy to note that after a dopey half hour the agility returned and I was moving at closer to normal speed. I slept really well last night, but have been taking little, almost involuntary, naps all day. Possible good news, the wake and shake phenomenon was much reduced today. I hope that holds.