Quote 2022

“Suddenly, the long years of feeling somehow apart from others, either alone in the universe or trapped in a world with what he imagined to be a silent, judgmental God, are ended. In many, many cases, the person perceived his previous mental attitude as sulking and petulant, even infantile. During the epiphany, he decided to stop sulking and – usually sheepishly accept the love and membership in the human race that he has been spurning.”

From Stuck on Pause by Janice Hadlock

And for the music and the faces, it’s the time of year again for THIS

Repair – December II

Tuesday, December 6

I’ve been tired all day without an obvious cause. I’ve been hungry for a week. The two themes of last week, reduction of shuffling and a more relaxed right arm and hand, continue to develop; still sporadic but still improving.

Wednesday, December 7

I took a sitting-in-the-recliner nap of about 25 minutes and woke up utterly zombified, and that lasted about two hours! Janice points out that dopamine is normally very reduced during sleep, so I guess maybe the brain is trying to find appropriate recovery levels. Walking up mornings is not nearly so difficult.

Thursday, December 8

It is the traditional start of the Italian holiday season, and right on cue the town went from deserted to mildly bustling. I’m secretly pleased that the local effort to start shopping on November 25 failed. I like the custom of a season that is strictly defined as December 8 to January 6, it helps a bit from turning the winter holidays into a mercantile fest.

Roman assembled the water rower this morning, so I missed a morning walk, but look forward to trying the rower this evening. It is the same model as I had in Scranton and I think it will help speed the transition from Pause-oriented to Para/sympathetic modes. Time will tell.

The first use of the rower was slow but rhythmic and felt great.

Later in the evening I could feel the dopamine running out and the override kicking in. This quote describes that: “During recovery, a person… can still use the norepinephrine override if they need to, even though doing so will feel mildly unpleasant and a bit stressful – a symptoms-free reminder of the mental intensity of one’s Parkinson’s days.” (From Recovering from Parkinson’s by Janice Hadlock)

Friday, December 9

Typing today, totally terrible. Try tomorrow.

Saturday, December 10

I seem to have turned a kind of corner. While walking I feel taller even without consciously trying to keep a straight posture. Night before last I was able to get out of bed in an almost normal manner (last night I slept soundly through and didn’t have to try getting up). I feel completely healthy with mobility issues. My right arm is loose and natural much of the time. I can almost whistle. The morning walk I stayed energized for the full seven laps (garage). The evening, I ran out of dopamine at five and a half laps. Recovery time was difficult to gauge, but it lasted at least an hour. Walking around the apartment later was strong.

Sunday, December 11

The morning walk was on the sunny side of the Duomo (somewhat longer a lap than in the garage). The gait was very strong, assured, and natural until four and a half laps when I abruptly ran out of steam; recovery took several hours, but the good news with all these walks is that recovery happens. It had been a week of garage walking because of rainy weather, so the improvement in stride was very apparent compared to the last time we walked the sagrato. Typing, by the way, is remarkably strong and fluid, and although I can feel my fingers getting tired, even that is not causing chaos.

The town is full of music and lights and clowns. I walked the equivalent of ten garage laps at the Duomo, all enjoyable, all accompanied by the sweet chaos of a seven-year-old scampering around me as I did. A month ago all that random movement would have freaked out my brain. Tonight I was even able to look around as I went.

Monday, December 12

Nothing was quite as strong or as fluid as it has been, but still markedly improved over say a week ago. I had a booster shot this afternoon, and that left me a little light-headed, so we scratched the evening stroll.

Repair – December I

Tuesday, November 29

A good walk in the garage with sports-like motifs. Then we went to Blue Bar for a visit with Erika (and Antonny). Then lunch and a zombie nap sitting up in the recliner. Flashes all day of walking shuffle-free, not very sustainable but give them time.

Wednesday, November 30

Some of the warmup moves Roman has encouraged over the past week of walking are beginning to pay off. Not shuffling is a tad more sustainable than it has been. There have been pins and needles in my hands, which may foretell improvements in manual dexterity (like typing!). The hands are much less likely to snarl and claw when I walk. All little things, but undeniably positive.

Thursday, December 1

I woke around 05:30, got up an hour or so later, tried for twenty minutes to finish in the recliner, failed, and went back to bed. I have vague memories of noisy turnings over, and of hearing Iryna arrive around eight, then everything is a blank until we got back to the apartment around 11:00. Iryna filled me in this evening and it was as if I had been sleepwalking all that time; I rose without help, then followed breakfast, teeth, toilet, dressing. I asked for a nap before we left, repeatedly inquired as to the day. We wheeled to the Duomo, did three laps on the sunny side and one across the front, went to the Cat Park where I took a nap, met and conversed with three people on the way home; and I remember nothing until we were in the elevator going up, maybe even later. Iryna said that the strangeness of my behavior this morning worried her. Worries me.

The rest of the day was pretty normal.

Friday, December 2

Friend says not to worry about the sleep activity episode, that Janice would explain. Janice says that higher-than-normal levels of dopamine while asleep will cause the phenomenon, and that if it happens again that there is an easy fix. It was still weird. She also affirms that the brain is seeking an effective level of production and distribution of dopamine and overshot the mark.

But today, even though there is little change in movement objectively, I feel more solid, less like I’m trapped by the symptoms. This may be another passing phase, but the feeling of distance is welcome. 

Yesterday, Roman bought three generators with money donated to Ukrainian relief and shipped them to Ukraine. He could have bought more, but there were none left in the area.

Saturday, December 3

Distance from symptoms continues. Good walks, morning and evening. Creeping around the apartment. Nothing noteworthy, except an uptick in typing skills.

Sunday, December 4

A lazy day with good walks morning and evening. The rain makes me want to be out, alone with an umbrella. Typing continues improved. Tension in right hand and arm considerably reduced (and tremor).

Monday, December 5

The left knee hurt like hell this morning’s walk, this evening no pain at all, not even the random pop. The right arm continues to be looser. Had a zombie nap this afternoon that took at least an hour to recover from. In many ways I feel stronger, in other ways I am fundamentally confused. The following quote helped alleviate some confusion.

From a footnote on page 34 of “Recovering from Parkinsons” by Janice Hadlock:

“Myth about Parkinson’s disease debunked”; ScienceDaily, 9-16-2014, www.sciencedaily.com/release/2014/09/140916084909.htm, based on “Three mechanisms by which Striatal Denervation causes Breakdown of Dopamine Signaling”; J.K. Dreyer; Journal of Neuroscience; 2014; 34 (37): 12444 doi: 10.1523/JNEUROSCI; 1458-14.201.

This article, like others, points out that, at the time of diagnosis, people with Parkinson’s have more than enough dopamine in the brain. This article’s point is that, for some inexplicable reason, dopamine is present in the brain but isn’t used to provide motor function in people with Parkinson’s.

This is not actually inexplicable. Dopamine release for motor function is supposed to be inhibited when a person is sleeping or on pause. After decades of not using striatal neurons because of being on pause, the brain, ever efficient and thrifty, begins to modify some of the un-used striatal neurons. Based on resumption of normal motor function that I’ve seen in recovered patients, it seems as if the brain restores these neurons when pause is turned off and parasympathetic mode’s dopamine-driven motor function is called for once again.