Month: November 2022

Tuesday, November 22

I had to hand sign a document today, and the result actually looked like my signature; a first in at least two years.

Wednesday, November 23

Slept well, but walking was difficult from the get go. So was movement of any kind. Things finally began to loosen mid-afternoon. Then after the evening walk, they tightened again. By nine I was convinced that I had not felt so plagued in months. Then I had a phone call with an empath and felt much better. Go with the flow.

Thursday, November 24

I slept two and a half hours, got up restless and stayed up for four hours, pacing, stretching, and unsuccessfully seeking a good position for going to sleep. I happily left this syndrome behind several weeks ago, but it has been creeping back over the last few days. Makes me mad. I finally went to sleep around 06:30, and slept like a baby for three hours.

The morning walk was surprisingly good, especially regards the right arm and hand which stayed unusually relaxed. Even better for the evening walk. Shiatsu was powerful and very effective. Dinner with Roman, David, and Birgitta was delicious and delightful despite my brain’s distrust of a new environment and how laborious it was to use a fork.

Friday, November 25

I slept well last night, getting up only once for about twenty minutes. That one interruption was precipitated by a dream that I needed to look up the Italian for “hit and run”. That was my initiating motive, and in my dream-addled mind continued to be the reason while I rolled over, jack-knifed my way off the mattress, and strained to stand. Only then did I understand my brain’s deviousness. Every night I swear to myself that I won’t be fooled, but almost every night I am.

The day went well enough until my nap at around 13:30, short as it was it left me tremulous and borderline despondent. I tried walking but could barely stand. I finally shook it off around four after having listened to a longish podcast while waiting for my body to simmer down.

The evening walk was groundbreaking. I’ve been trying to find movement for the upper body aside from the very rare and slight automatic swinging of the arms. Tonight I discovered sports imitation works well; throwing various imaginary objects not only gets my upper body moving, it encourages automatic movement of the legs and is lots of fun!

Saturday, November 26

The cavalcade of sports theme continued during both walks today. In the morning I tried to jump into the routine at the same level we finished with last night and was instantly exhausted. This evening I was more gradual and enjoyed better results.

After last night’s walk, I came home spent. That lasted until about ten when I got a second wind until bedtime at 00:30. I slept two-plus hours and woke fully rested, so there was a lot of pacing from then to 06:00 when I finally was able to sleep. During those circuits of the hallway, my arms remained relaxed about ninety percent of the time, and my gait was pretty solid.

This morning’s walk ended with a gentleman coming up to me, obviously an acquaintance but one I could not place. He finally identified himself; it was my former doctor Stefano Gazzurra. He looked great! “Oh, you know… retirement will do that.” He was so excited to see me walking, “instead of being stuck in a recliner”. I was so happy to see him. It’s been two years since he retired.

A by the way I always forget thing, last few weeks have featured some urinary incontinence when first standing from sitting or lying down; either seems more psychological than physiological because there is no urge until I think about getting up or think about peeing. The incontinence rarely involves more than a small leak. This current period comes several weeks after a week long period of improved urinary retention.

Sunday, November 27

Happy 115^th birthday, Dad!

My dreamt motive for getting up at 03:20 was to prevent my becoming a Dutch windmill. Go figure.

Then followed the worst night I’ve had in a long time. For three hours I mostly paced, stretched and tried to sleep. When I finally did sleep, it was for 90 minutes that ended in not being able to put my body into a comfortable position. I tried pacing again, but my gait was barely in control. I tried napping in the recliner but as soon as I drifted off I was wakened by restless leg syndrome, and immediately after that the wake and shake phenomenon. I tried going back to bed, but was immediately uncomfortable. So, I wrote this. And something else I keep forgetting; after a week’s respite several months ago, the drooling began again and has not lessened.

Typing, however, isn’t terrible.

The morning walk was as could be expected after a terrible night, but it all struck me as rather funny. Then Iryna wheeled me over to the Cat Park where she let me sit in the sun. No cats, though, until about five minutes later when a striped gray walked out on the wall. A single tourist came into the park, and the cat met him to pose for pictures. I closed my eyes and when I opened them again, the single tourist was gone and thirty more were there to replace him. The cat stayed put and continued to pose.

I took a nap after lunch and woke feeling like I would never move again. I did, though. But feeling a tad despondent. Then a meeting of the Zoom PD Recovery support group completely turned my mood around; they are such a blessing.

The evening walk was also difficult, but was merely a reminder that there are no straight lines in this recovery process.

Monday, November 28

I slept well last night, but walking today feels like I’ve taken a huge step backwards.

A possible metaphor. Imagine that you have inherited a house whose owner was a hoarder. The only entrance is through the living room, so that must be cleared first. Then as subsequent rooms are cleared, that trash must be taken through the living room, and must occasionally be stored there for a short time when the dumpster gets full. From the perspective of someone whose main objective is the cleaning of the living room, progress seems short-lived before it is inundated again with trash, when in fact the house as a whole is gradually becoming organized.

Maybe that’s what is happening to guys like me? At any rate the evening walk was good and typing is a disaster.

Wednesday, November 16

Last night between first and second sleep I paced the hall for forty minutes. My arms remained relaxed after five minutes, and everything sort of let go. My left ankle hurt badly, as did my wrists when there were tiny tense moments, but all in all it was the most enjoyable walking I’ve done in recent memory. This morning I woke with a sore left haunch. I don’t believe the two events are related. Walking today has been more relaxed than usual, but never quite as wonderful as last night.

A long-term realization; the PD walk can be characterized by a lack of speed control. That has largely disappeared for I know not how long.

Michele did shiatsu, emphasized the left ankle.

Thursday, November 17

I tried some Fosse on the sagrato, morning and evening; it was fun and it helped rhythm, but the right claw would not relax unless it was doing choreography. I keep trying.

Later in the evening, after watching an episode of The Crown, I got up for some kefir, and then paced the hall for a few laps. Everything was relaxed and flowing, as it was Tuesday night (above). I enjoyed that for awhile, then determined to find the difference between those hall laps and the troll that I turn into when walking the sagrato, I made an effort to correct my posture. Immediately, the fists clenched, my arms trembled, and the troll started metaphorically to harass passersby. I feel as if I discovered a kind of switch, but don’t understand it at all. By the way, fifteen minutes after all that, typing is remarkably smooth, and the troll was nowhere to be seen as I made my way to the study to write this.

By the way, I slept a straight eight last night.

Friday, November 18

It seems the really good stuff happens in the wee hours of the morning when there are no others to bear witness.

I couldn’t get to sleep last night. It wasn’t a problem of not finding comfortable positions, or pain, or jumping muscles, or overactive mind. I was able to lie still in a blissfully comfortable position for an hour at a time without result. I simply wasn’t tired. So, I got up and paced. The pacing was relatively relaxed and became more confident as it went. That feeling of confidence was so strong, I felt on the verge of letting go of all PD symptoms, that I was so close! At about 04:00 I decided to have a yoghurt. Now, when I sit at the kitchen table, I ease myself about half way down then drop the rest of the way. This morning, I sat normally, coming to a soft landing. That’s been almost two years I’ve been unable to do that! Emboldened by what seemed an almost athletic feat, I tried scooting the chair closer instead of pulling the table towards me, and was able to do that, as well! That also represents a change of two years.

Then I went to bed and slept five hours.

This morning, movement was slow and heavy, typing a bit chaotic, but I was not bothered. This afternoon, confidence returned and remained into evening. I’ve seen the future, and it is good.

Saturday, November 19

It was a good night, and a good morning. There were lots of little things I was able to do myself. Cynthia came over for a visit in the afternoon. We had done no more than greet in the two months she’s been here, and it has been three years since she was able to be in residence, so it was beyond wonderful to catch up.

Then I fell asleep sitting upright in the recliner while waiting for Natalia. I woke up a zombie with a tinge of non-specific fear dancing in my stomach. I saw it through and it went away, but I didn’t care for the taste of it.

My newly refound agility for sitting and scooting survived until the post-zombie period, so will presumably be there tomorrow.

Sunday, November 20

The comfort and agility reported on Friday has in large part gone away (for now), but walking this morning was okay. Thing is, I can move around the apartment with arms and hands fairly relaxed, but as soon as I walk outdoors (or in the garage) the hands clench and tremble and my forearms and wrists hurt. Friend says to let it play through, and I try, but the most difficult part of walking is what happens to my arms. However, during the evening walk, I remembered that several weeks ago while doing the “grande U” my arms were clenched, but there was no shaking. So, Friend is correct, the thing with the forearms is a part of a progression, and will change.

Iryna massaged my arms and that helped a lot. For the evening walk we did almost a full kilometer without much arm discomfort. Of course, it meant letting posture collapse into a stoop, but, hey, everything has its price.

Monday, November 21

I had a difficult time getting to sleep, and I blame it on couple of unintended naps yesterday afternoon. As a consequence, I was a bit dopey this morning and the walk was less than stellar. But my mood – attitude, point of view, internal energy – has been open and content. During the evening walk there were periods when my gait felt almost normal (with the exception of immobile arms).

Tuesday, November 8

I slept too little last night and spent the morning in a stupor. The day followed accordingly.

Wednesday, November 9

When I walk around the house I can keep the tension that creates away from turning my hands into a claw (especially the right hand). I cannot do that when walking anywhere else. I find that very bothersome. The claw is also often accompanied by shaking. Even more bothersome.

I’ve been doing abbreviated qigong on my left knee and ankle with wonderful results, but I have to do it often.

Once again I feel generally better than I felt earlier in the day.

Thursday, November 10

My mother would be 112 today. Happy birthday, Mom! You are the best!

Movement was compromised, today but nothing out of the ordinary. Realized that I can go up my dentist’s stairs while those in our foyer are hit and miss, because I approach them already on my feet whereas at home I approach the steps right out of the wheelchair. A small triumph neutralized. However, I also realized that the phenomenon of full-body rigidity after a nap disappeared weeks ago and has not come back, though I do get a very slight (and brief) taste of it after shiatsu. Just in the past few days “wake and shake”, where waking even after only touching bottom would always be quickly followed by full-body shaking (not just after naps, but intermittently during the night as well), has been absent or at least fairly light; fingers crossed on that staying away. Finally, restless leg syndrome seems to be on the wane, but that’s a race too early to call.

Friday, November 11

Walking felt better overall than it has been last few days. It also feels frustratingly close to a breakthrough, but maybe that’s just native impatience.

Saturday, November 12

Sleep has been ragged all week. I wake up after an hour or two, kill another hour or two, then sleep until 08:30 or nine, for a total of six or seven hours, and can nap for no more than thirty minutes. The quality of sleep is good, except that turning over is often back to being a lot like wrestling a sack of ball bearings. Walking today has been all over the place. Friend says not to worry, so I try to observe and marvel at all the different ways my brain has of moving poorly.

Sunday, November 13

During the morning walk: I was able to straighten my back for several paces at a time; there were periods during which my arms were relaxed (sans claws) and (gasp!) swinging automatically – slight and rare, but real; some evidence of shoulder movement. The evening walk was a bit better than this morning’s and with the same characteristics.

Monday, November 14

Sleep last night was frequently interrupted by a need to move or stretch or reset positioning. When I slept, I slept well, but the first half was very much sack-of-something turnings over, while after four (as is often the case) I moved more easily and felt physically more agile. The morning walk was a bit better than last night’s. Typing is 65 percent normal on a totally unscientific scale. I tried incorporating some Fosse in my evening walk but even Roman couldn’t sustain it – but at least I tried. From mid-afternoon to now the Normal Typing Scale tumbled to 25, like Wall Street after a jobs report.

Tuesday, November 1

Lost energy halfway through the morning walk and never got it back. I can still clap though, and can gorilla-beat my chest again for more than five seconds. This evening I am physically restless and spent at the same time.

Wednesday, November 2

What sleep I had was great, but there was large hole in the middle. Morning walk reflected that. Even though it took half the afternoon to get any energy back, I couldn’t really nap either. The evening walk was above average. Then while having a Blue Bar visit with Erika, a dental implant fell out. Oddly that put me on the cusp of entering Pause mentality, but Friend counseled patience and a half hour later I was fine. Typing is still chaotic.

Thursday & Friday, November 3 & 4

Nothing especially different happened, good nor bad.

Saturday, November 5

Everything is subtly, slightly better. Everything. Across the board. Nothing is easy, yet. Everything is far from perfect. However, I will take universal improvement, even if slight and it only lasts a day.

Sunday, November 6

Two weeks ago, Janice told me that I was recovered and that what is left may be several months of repairing the damage done by what could have been sixty years of being on Pause mode. I’ve decided that she is correct, although I am a bit afraid of jinxing whatever progress I have made by leaping for the finish line. But even if each case is different, she’s seen this process hundreds of times and knows what the signs are.

Or as Natalia put it, “you need the courage of a goose”.

In light of this development I’m retitling these post as “repair”, and they may change format (depending in part on how quickly I can rebuild my typing).

But for today, the morning walk on the sunny side of the sagrato went smashingly well from my perspective. Yesterday’s general improvement survived the night. Then I took a nap and never quite recovered. I asked Friend why this happens, and he explained that dopamine levels plunge while asleep and it takes an hour or more for my brain to catch up. Then I had visitors, and at about the 75 minute mark I collapsed again. (Friend said I’d run out of dopamine – chill, refresh). I fell asleep bolt upright while refreshing, and woke shaking and barely able to walk. (Friend explained that my brain has also forgotten how to use the para/sympathetic spectrum, and will need time and repetition to relearn.)

Off we went to the garage where I tried to replicate this morning’s walk. Wasn’t working until Natalia starting hitting me which made me laugh, then legs loosened (though arms never did) and I walked rather well. Then I walked home without support and even held the door for Natalia and climbed the steps myself, and normally, too.

A note about Friend. At first I had difficulty with the concept because it smacks of talking to the dead and seems to want a supporting cosmology. Forget that. The point isn’t to form or follow a religion, the point is to stimulate the striatum, so just do it regardless of how illogical it might seem or if it makes you self-conscious. It works, and that is important.

The courage of a goose.

Monday, November 7

The morning walk on the sagrato was relatively quiet, strong, steady, and controlled. Even posture was fairly good. Moving at home is also freer and more confident. The evening walk, also sagrato, wasn’t as relaxed as this morning’s, but I was able to get some opposing arm swings going for the final two laps. It took effort, but even with effort that is not something I’ve been able to do for any length of time for at least two years.