NOTE: All quotes below are from Recovering from Parkinson’s by Janice Hadlock.
Tuesday, January 24
Limpness was extreme, all day. Morning row, walk, and prep were all cut short. I napped for an hour in the recliner and was zombified for hours after that. The evening walk was easier, not by much, but movement after dark became stronger, and even though I slept in chunks separated by what seemed like impossible turnings over in bed, I woke rested and relaxed.
Today was the second anniversary of my first day of reducing (eventually to zero) anti-Parkinson’s medication. The final dose of meds anniversary will be the one to celebrate – 20 February.
Wednesday, January 25
There were several things to do before wheeling down to my dentist’s, so I rose early, but I was moving much more easily than yesterday so we ended up with an extra twenty minutes. Roman suggested I rest in the recliner. I tried to imagine walking instead because I was afraid of triggering zombiness, but napped in spite of myself and didn’t feel at all bad after waking. Limpness was much milder overall, but I kept falling asleep in my dentist’s waiting room and again even while he filled a cavity.
As is the case almost every day and whether or not I mention it, I am almost always at least a little hungry, and not for lack of food.
Thursday, January 26
I stumbled across this bit of text yesterday. I think it’s relevant, or at least I hope so. “Again, of the four types of PD, people with Type I PD are the ones most likely to manifest the Parkinson’s personality. When they recover, they instantly drop much of that personality and become, in their own startled words, ‘back to my real self!’
This ‘real self’ turns out to be much less fearful, less inhibited, and less critical of others or self. It is more comfortable being around others and is, in turn, a lot easier to be around.”
This was a very sleepy day, but all those naps (plus shiatsu) didn’t at all have a negative effect on sleeping at night, so good.
Friday, January 27
Ditto Thursday… (but without shiatsu)
Saturday, January 28
Had a good workout on the rower, an okay morning walk, and a very good walk this evening. The contrast between the habitual and undermining negativities of pause-like mentalities and the calm, solid, and happier state of mind on the normal para/sympathetic spectrum, becomes more obvious daily, even when symptoms remain.
“The rapid personality change […] that might occur almost immediately when pause turns off, is pretty typical. Of course, the person […] also mentioned with disappointment that, even though he felt recovered in his heart, his symptoms were only slowly starting to ease up and recovery symptoms were just starting to occur. He wondered why, if he’d turned off pause, he still had any symptoms at all. I replied to him something along the lines of ‘the war might end abruptly but the rebuilding after the war will take some time.’ His symptoms have since steadily decreased.”
T’was another very sleepy day. I continue to smell random odors; soap, chocolate, lavender. Oddly, I’ve never lost my ability to smell tobacco smoke or (at least some of the time) coffee. I was never a smoker, myself and am ambivalent towards coffee.
Sunday, January 29
All the interesting stuff happened Sunday night.
Maybe two weeks ago, I was suddenly able to go on all fours as an alternative to turning over in bed. Then on Saturday night I discovered I could also crawl backwards (previously impossible) so that when I threw myself at the pillows, I ended up other than smashed against the headboard. I spent a lot of time that night doing this, partly because I was searching for a comfortable position, and partly because the new mobility was fun. Sunday night I went to bed confident that my new freedoms would build on the experience of Saturday night.
So, I slept okay for an hour, tried adjusting by crawling, failed, and finally got up for some stretching and a reset. Then the next two or more hours were spent searching for a good position, and unable to do much of anything that had kept me entertained the night before; I felt heavy and the sheet against my night clothes stuck like velcro. Finally, for no real reason, I slept for two more hours. From a blissful dream I was awakened by a sore right shoulder. Piece of cake, I thought, I’ll crawl into a better position. No. Crawling and turning were both near impossible. But in the midst of trying, at one point I easily sat upright from having been flat on my back, in fact I did it twice, a maneuver that has not been possible for at least a year and a half. After another hour, the heaviness went away and bedclothes went from velcro to silk and I slept two more hours, turning easily and comfortable in any position I found myself in. Who’s to say what that was all about?
Monday, January 30
So, on Sunday evening’s walk, I used both legs almost the whole time. That may seem a little obvious, but I usually feel that I’m using the right leg and the left one kind of fills in. Last evening, they were equal.
Last week, I referenced a Friend adjustment. Here’s the story. For the last several months Friend was played by my best friend immediately after college, and he did a fine job, too. Lately, I kept forgetting he was there, then my mother suggested we give a parasocial relationship a try. That made sense. Since she died 16 years ago, I often share with her. And the first five or six days were great! Then I tended to forget to include her, too. So, now it’s whoever presents themselves. As Mom explained, the whole purpose is to activate the striatum by connecting with an intimate who exists outside our usual reality, so a few spares can’t do no harm.
“A strong habit of mentally conversing with someone who loves you and with whom you can laugh and comfortably be yourself, whether it’s your late cousin Larry or some aspect of God, helps keep your attention on the waves generated or received by the heart. Conversing with a trusted, irreverent friend also stimulates the currents that run through the midbrain, keeping the striatum and thalamus activated and keeping the body circuits running predominantly in parasympathetic mode patterns.”