Month: January 2022

Tuesday, January 25

Slept deliciously well, had dental work, walked on the sunny side of the Duomo. It was a fine morning, splattered with dots of joy. I napped perhaps too much (tonight will tell the tale) and got annoyed at the bottomless font of mucus that is my nose at mealtimes. I read in Recovering from Parkinson’s about how symptom free episodes rise and fall in chemical terms and was encouraged by having had exactly the experiences described, myself. We watched camera crews from RAI recording imagery around piazza del Duomo, both morning and night, for a show called Da dove sei. I felt profoundly unsettled after dinner, but the feeling passed.

Wednesday, January 26

Slept very well, had a great class in Alexander Technique, walked in the garage, morning and evening.

A few days ago some supplements ordered early in December finally arrived. They included a bottle of l-Tyrosine, a dopamine co-factor that in my impatience I decided to try. Janice at Parkinson’s Recovery Project had written nothing about it, but she does warn against flooding the system with non-natural dopamine, one of the reasons being that the brain responds by cutting natural production. I don’t know if l-Tyrosine is in any way analogous to synthetic dopamine, but just to share my experience with fellow travelers, the three days of l-Tyrosine trials rendered me heavy, stiff, and hopeless. Not all the time, but much more than I have experienced before, so I’ve stopped it. Stand by for a follow up…

Thursday, January 27

It has been several weeks since I’ve needed to stretch my lower back in order to fall asleep, so last night when I awoke electrified at 04:30, it took me until almost 07:00 to remember to stretch. I did and was asleep in minutes. Then the post-walk nap was momentously serene (because, I later realized, my right arm is especially relaxed today), no wooden leg phenomenon when I woke on my own, and as has been the case for at least ten days, no RLS. I began my post-lunch nap with great optimism, and it was justified until the ending series of awakenings, the last of which was punctuated by a long session of wooden legs – presumably to make up for lost opportunity.

Typing today is mostly good.

Rhinitis after breakfast was unrelenting, after lunch, it barely registered. The joy of dining is often stolen by having to blow my nose throughout a meal.

Friday, January 28

Slept beautifully, and Roman, who intuits my needs incredibly well, let the sleep continue until 09:30. I woke feeling like I could do anything, then I tried and discovered otherwise. The morning garage walk was okay but exhausting. Post-walk nap was short but profound, and I anticipated with glee continuing it after lunch, but that didn’t happen – there was neither need nor inclination.

Typing is pretty good despite intense pins and needles in my hands, intense to the point of being distracting.

A curious thing happened at supper. I walked into the kitchen and almost said “wow, whatever you’re cooking smells great!” Then realized that my sense of smell went away around twenty-five years ago – a classic early symptom of PD. At that point my being able to smell the food Roman was preparing vanished, and did not return.

After supper at some point I went through about an hour of feeling stiff and hopeless, the same as I theoretically attributed to l-Tyrosine several days ago but without having taken any, so that suggests there is no connection. After the hour or so, I felt good for the remainder of the evening; still with difficulty walking but movement in general was a bit easier and my mood was fine.

Saturday, January 29

Slept well in two sections, and once again woke feeling like I could do anything, which in reality was again not the case, except when I stood and moved towards the kitchen I had the oddest feeling of being taller. When I fell last summer several health professions said it would be six weeks before my legs would begin to recover, and six months before I would recover the mobility I had at the time of the fall. That seems about right at a week or so shy of six months since my release from hospital. Feeling taller may be connected to that, I don’t know.

My left ankle was a little sore this morning, so Roman took us out to San Giovenale to take in the panorama and bask in the sun. I stood at the wall and we paced the little piazza several times, both for the first time since I fell, and against all evidence I felt like I could do anything – but couldn’t.

Took a short but powerful nap before and after lunch. The one after lunch I woke up from on my own, and while there have been no wooden legs for several days, it seems that has been replaced by about twenty seconds of full body trembling. After that I was treated to my left foot rising on its own and fluttering like a butterfly; because it was pleasant I interpreted that as recovery dyskinesia rather than RLS.

Typing is comfortable if occasionally approximate.

A curious event happened during my brief evening nap. Fully asleep, both arms jumped up, then the left arm swatted away the right with some anger while a voice said, “that’s the Parkinson’s” which I took to mean “we’re swatting away PD”. I await the results.

Sunday, January 30

I slept really well, waking briefly at 03:20 and again at 06:30. The second time I felt great and walked to the kitchen for water, perhaps not exactly as Nureyev would have done but better than usual. I had the water and returned to bed where I slept well until I woke again at about 08:15, shivering as if from cold. That continued off and on until Roman opened the shutters at 09:00. Then during my post-lunch nap, the shivering happened again. True, after seeing how much gas had been used since the end of September, I adjusted both nighttime and daytime temperatures downward by a half degree when I woke at 03:20, but I couldn’t imagine it would make that much difference. Just the same I restored both settings just now.

The morning walk on the sunny side of the sagrato was difficult, and that after feeling that I was capable of any movement even after I got out of bed. But much of the journey to and from the Duomo was effused with joy, so it didn’t upset me. I got home and into the recliner and fell deeply asleep for twenty minutes, whatever else the morning was, it was exhausting.

Pins and needles in my hands continue (and annoyingly so), also occurring generally (and briefly) when I make a strong physical effort (like dragging myself out of bed). By the way, moving in bed has been vastly easier in the last week or so, or rather, the improvement continues.

Typing today is acceptably good.

Evening comes. Walking was shambling, but not bad. At bedtime, my first attempts at sleep were met again with shivering, but the temperature of the room was, if anything, too high. The shivering only occurs when I’m prone, it doesn’t happen at all sitting or walking, and what right arm tremor there is (and it is slight when it is anything at all) is calmed by stretching the muscles in my wrist and forearm. 

Monday, January 30

I slept well until 04:00, stretched the lower back, and slept until 08:00. The shivers of yesterday have not repeated themselves so far, except as a minor echo towards the end of a short nap this evening. Wooden legs have not happened for almost a week (knock on wooden legs).

Lots of intense work dealing with understanding and organizing things for the pending sale of my Scranton property, mostly how to notarize documents. Having an Italian notary do it was fraught with time taking and expensive complications, but both Florentine consulate and Roman embassy were not taking appointments as late as today at noon. To be safe I made an early morning appointment in Napoli, but wasn’t happy about it. Then at about two I checked Firenze again on a hunch and was able to get an appointment. So, Roman and the wheelchair will be joining me there on Friday, and maybe Erika – I hope. All we need is a ride. I’m actually excited.

Tuesday, January 18

Work. Glimpses of joy.

Wednesday, January 19

Work, walks.

A sleepy session of Alexander technique.

The evening walk wanted to turn into a dance, and at times it almost did. 

Thursday, January 20
I took some NyQuil before bed last night and have been sleeping every chance I get. It also seems to have reduced today’s rhinitis, but I’m not sure the trade-off is worth it. 

Today, only glimpses of that remarkable joy, they may also be a victim of cold medicine. Janice wrote that the joy is a sign that dopamine is being released in the mid-brain which is a strong recovery symptom. That’s encouraging, as the joy is the realest and most inarguable thing that’s happened to me.

I think I’ve finished the rehearsal script for Soup.

Friday, January 21

This morning at about 03:30 I woke up coughing, then sneezing and blowing my nose. It was as if I’d ignored my snot quota during day and my body was catching up. It went on for a long time, and I was finally driven to take a half dose of NyQuil with predictable results for the day following.

And that most peculiar phenomenon; when I wake myself while asleep on my back, it is always followed by about 20 seconds of rigid legs and feet, and shaking (or rigid) arms. No idea how to categorize that, either, but it just happened four times as I was struggling to wake from a nap.

Otherwise, our roll to the Duomo this morning included frequent periods of sublime joy. By contrast, the walk on the sagrato was iffy because the pavement was slippery wet, and my body reacted like it was strewn with marbles.

Saturday, January 22

Lots of sleep. Some work. Walking was difficult this morning, but almost silent this evening. Many glimpses of joy.

Sunday, January 23

The past two nights I have slept seven hours straight without so much as getting up to pee, plus many hours napping during the day. My declaring sleep marathons a thing of the past was clearly premature. I have also gone the week without one incident of RLS that I can remember (knock on wood). Today I have intense pins and needles in my hands and forearms, that after a rather substantial break. And typing is better than usual.

The evening walk on the sagrato was easy, shuffle free and scattered with moments of profound joy. Roman told me of a time when an ice rink was installed on the north piazza for two or three weeks during winter. I hope they revive that, someday! 

Comparatively speaking I feel rather well.

Monday, January 24

I slept too much yesterday, so last night there was nothing resembling sleep visited upon me until six. Roman let me sleep until 09:30 so I got a good top of the day nap, but it still meant that despite my feeling genuinely better in a broad way, walking the sagrato was nigh impossible. Interestingly, napping has also been impossible, but that’s probably a good thing.

Tuesday, January 11

Early this morning I walked to the kitchen and there was a spring to my step, it was completely spontaneous and natural. It lasted a few minutes then faded, but was the first time I could walk that way in at least two years.

I walked morning and evening for a total of nearly 1.5 kilometers, not perfect form but not bad either.

I think my marathon sleeps are over, replaced by a totally screwy schedule, but good sleep and a reasonable number of hours.

Typing is mixed.

There are no straight lines in recovery.

Wednesday, January 12

The marathon sleeps are over. I woke at 04:15 and had nary a promise of sleep again. I am, in fact, unusually alert, the wakefulness owed nothing to discomfort. But Lord knows I tried. I finally gave up at 07:15.

Had a wonderful session with Monika on Alexander Technique. We found lots of tension in the upper body, but rather looser than usual in the lower. That might explain why walking this morning felt like my legs were made of rubber.

Two naps were successful in that they made twenty minutes seem like forty.

The evening’s twelve garage laps where stronger than this morning, not as strong as yesterday. Nature still knows no straight lines, so it’s okay. I frankly feel terrific.

Thursday, January 13

First sleep, two hours. One hour working on my play, second sleep six hours, and perfect. Roman had a surprise for me in the sitting room. While I slept he removed all the stuff that has not been in use for months. Such a gift!

Legs are rubber. Movement is slow. Agility various but mostly awkward. And I felt wonderful all day. I’m embarrassed to admit that the glow was dimmed a bit by trial watchings of two movies both of which the first twenty minutes threatened to depress me for opposite reasons. At least I had the good sense to quit.

We took an evening walk at the Duomo. It was cold.

My voice has been full, relaxed, and resonant since Tuesday. My vision became a little fuzzy today, like my prescription is suddenly wrong.

Friday, January 14

Slept well but with an oversized period between first and second sleep.

Walking the Duomo last evening made my ankle a tiny bit sore, so we opted for a short garage walk at the conclusion of which Roman proposed we wheel out to San Giovenale. The air was crisp and dry, the light beautiful, and he went slow. Once there he placed me in the sun and let me doze “like an old cat”. It was pleasurable beyond description. 

A sweet hour’s nap followed lunch.

A jovial meeting in the garage with Hans, Ida and their Jack Russel Terrier, Amber was followed by a pretty clean kilometer. Legs are still rubbery, typing is exceptionally random, voice is still strong, and vision still fuzzy.

I feel fantastically well.

Saturday, January 15

Woke feeling very alert, and that lasted through the morning. My muscles were also tight and I expected to have a difficult time walking, but our garage laps were pretty easy, and even included some rocking with the stride and some swinging of arms. In deference to a slightly sore ankle we stopped at five laps.

I am very aware of how important attitude is; there is no room for self-pity, non-acceptance, or impatience. That certainly applies to recovery from PD and probably applies to most everything else.

First sleep last night was four hours spent in sprawling, informal positions. Intermission was two hours, second sleep three. Then after lunch my state of high alert suddenly vanished, and I napped in the recliner for almost three hours, the last half with legs crossed.

Ten garage laps happened early because of a Zoom meeting at five (a read-thru of Soup).

Vision is clear again, voice became a little fuzzy.

Sunday, January 16

There was no first sleep last night. No lack of comfort prevented me from sleeping before nearly 05:00, only the fact that I was not the least bit tired. The upshot was two hours sleep, but I woke with such joy. After breakfast and getting dressed for the outdoors, we waited an hour for the fog to break and I got an hour’s nap that I devoured like a wood oven pizza. Afterwards, I was asleep on my feet so Natalia suggested a passaggiata in the wheelchair. Wisps of fog remained at first and a handful of tourists scattered across the piazza, but by the time we reached the Duomo there was sun and the number of people had multiplied. We went slowly along and the beauty of it all was overwhelming. I often find myself overcome with joy these days.

Voice is a little phlegmy but otherwise clear. Vision is clear. Typing is various.

Monday, January 17

Feet of lead, legs of rubber. Walked a kilometer, just the same, but nothing gracefully. For the past couple of days my right arm has been relaxed and quiet 90 percent of the time; that is a gift. 

The anti-skid socks I wear are showing holes so Roman got me a pair with Disney characters on them. “How are the Gypsy Day socks?” he asked. “The what?” “They are American animated characters, you know them!”

I tried later to explain how Chip ‘n Dale was a play on words, and while it was fun trying, I’m not sure I did a very good job.

Tuesday, January 4

A repeat of Monday. I slept so much on Tuesday I expected to sleep not at all at night, but I slept well and long, then slept all the next day, too. These are all classic recovery symptoms, replaying from early last summer. The sleep, I am happy to report is delicious.

Wednesday, January 5

Last night I went to bed at midnight and slept easily and well until 04:30, then after a horrendous struggle physically to get out of bed, and some pacing, did not sleep again until 07:00. My celebration of comfort and ease of good position felt premature, but in truth it was somewhat more complex than that. The first discomfort was temperature, I found the usual setting to be too warm; that aborted several otherwise decent attempts at sleep. The second was muscular tension, but at some point in one of my experimental trials in the recliner I found I could jiggle my thigh muscles with my hands; they were very loose but felt really tight from within. Also the lower back, which sometimes needs stretching, was resistant to any and all attempts at reducing soreness (as it turns out, that is a recovery symptom, but that didn’t occur to me in the midst of the struggle). The third was emotional and that culminated around 06:00 while pacing. I went from a pretty good gait to one barely moving on one turn around at the kitchen table and never recovered. That made me a bit depressed. When I did finally sleep, it lasted only a few minutes, so when Yuri arrived I was on my feet shuffling and shambling. At 09:30 after the morning routine, I lay down in the recliner (that had only inspired RLS at night) and slept gloriously until Alessandro arrived to process my documents for a new health system card two hours later.

A post-lunch nap never really materialized as I kept going in an out of sleep, and every waking would be accompanied by the usual shakes and wooden feet so my body never got to relax. I made up for it later.

Typing so far has been relatively excellent.

I read that frequent pee urgencies is a recovery symptom, too; the recalibration of the brain in how to interpret no-longer numb bladder responses. That’s good because it’s driving me nuts.

Thursday, January 6

Save for Yuri waking me for meals, I slept from 01:00 this morning to 15:00. Except for the last hour or so, sleep was blissfully comfortable and sound. For the last hour, I woke briefly every few minutes and whenever I wake on my own I experience a few seconds of arms shaking and feet pointing woodenly, so that happened a lot but even that did not deter me from falling back to sleep. It is significant that while in bed (from 0:01 to 09:00) I rolled over, changed positions, and even got up for short periods, all without significant difficulty or discomfort. These kinds of sleep patterns are classic recovery symptoms. I’m encouraged by all this and the sleep itself is delicious.

The evening walk was quick, relaxed, and in good form (though not Alexandrian) for twelve garage laps. Generally, movement is the same – at least much freer and secure, though probably evident only to me. Incredibly, only two hours after having slept eleven out of thirteen, I’m ready for a nap!

Took a nap, woke feeling vague, so I will exercise a bit.

The vagueness persisted but at a much less acute level, but replacing it was a mild general confusion. Or maybe it was the movie I tried to watch, in Italian (Roman) that I understood almost none of, and even with subtitles was difficult to follow – but maybe it was just I found it boring except for the pizza (I’m so lonely for good food, Yuri as cook has settled into a rut). That muddledness wore off over a half hour, and I was in bed by about one.

Friday, January 7

First sleep lasted two and a half hours, there was a thirty minute break, and second sleep lasted five hours. Then from about 09:30 I napped three more hours. All this after having slept until almost 15:00 yesterday. I would have taken a nap after lunch but RLS prevented it.

During the night, I rolled over and changed positions easily and comfortably. I virtually woke with a smile, the sleep had been so delightfully normal.

The exaggerated pee urgency seems to have calmed down today. 

I am experiencing, however (mid-afternoon), a reluctance to focus on anything, like all my shields are up in the form of general resistance. I’ll exercise a bit, see if that changes. I received the Smovey rings I ordered and find them to be remarkably effective exercise tools, even in the brief time I’ve used them.

The evening walk was 16 garage laps, fast, in good form, and very enjoyable. The laps left behind a wonderful agility that did not, sad to say, survive the next nap.

While watching a movie, the ice-crystals vision distortion happened briefly (about ten minutes) which also caused a mild befuddlement, and I remembered three or four incidences of this in the spring of 2019, not repeated until this week.

Saturday, January 8

Sleeping a lot continues to be the rule of the day (and night). 

Last night I was even more comfortable during sleep than night before last, turning over easily into a variety of positions unimaginable since maybe four years ago. That comfort and agility has carried over into waking movement a little, but is most notable in typing, which is slow but much cleaner than it has been in years. Also, in pacing the hallway, I can control speed and regularity down to a walking meditation.

Something is changing. I hope.

Sunday, January 9

Racked up nine hours sleep between 02:00 and noon, all of it good and comfortable. Movement around the house once I got up has been more fluid than usual. Typing is relatively excellent, if still a bit slow and hesitating.

I couldn’t sleep after lunch or at all during the afternoon, RLS threatened. But had another good walk, somewhat less solid but still swift and fluid. Typing lost its luster, however, but is still possible. The general isolation without the blanket of sleep will wear on me in time. I hope I can become engaged with a writing project!

Monday, January 10

Odd hours of sleep continue, but I’m not sure the volume I’ve been getting is still the rule. The after lunch nap was punctuated with small awakenings, thus with shaking arms at each one, but (thankfully) no wooden feet. I dreamt about a road trip across country I took with three friends during the summer of my junior year in college – a theatre tour, Ashland Shakespeare, Stratford (Canada), Shaw Festival, New York. I didn’t research it as well as I might have so we spent a lot more time in cars than in audiences. But one of our number ended up with 25 plus seasons in the company at Ashland. Looking back, we should have saved the gas as stayed in Ashland. I woke nostalgic, not in a healthy way.

We did sixteen garage laps, swift, smooth and controlled. Watched a good movie, and was uncomfortable in the chair the whole time. The isolation, lack of work (and real walks), and difficulty writing is getting to me. A familiar complaint for many of us these days.

Tuesday, December 28

I slept in chunks, but there was very little time or activity separating them. Woke before Yuri arrived, had breakfast, then after the leg rub took a nap of about another hour under covers. I woke up in a position that I can only obtain accompanied by loud and foul grunting and cursing. I had no memory of how I had gotten there without waking. If I can roll over while asleep, why not while awake? 

After lunch I took an absolutely delicious nap of a little more than an hour in the recliner without significant restless leg syndrome and essentially no wooden leg and shaking arms (or distorted vision) afterwards. And I’ve felt pretty loose and happy despite appearances. Also typing is relatively smooth.

The evening brought with it a decision to report honestly but not to dwell on the annoyances. Instantly, I became physically more comfortable. Obsessing on the negative details is an expression of my impatience.

Wednesday, December 29

Around 04:10 I got up for something to drink. I rolled off the bed and stood without the usual grunting, and the walk to the kitchen, while not the symptom free experience of several weeks ago, was smooth, graceful, controlled, and largely without shuffling. I forgot my thirst and did laps. The gait improved over the next few laps as my body gained confidence then settled into a rhythm. It stayed there for thirty minutes before it began to tire. 

I secretly hoped for some carryover on the walk between Roy’s car and the Alexander class – the path curves around the building and includes 8 steps – and to be fair there was a slight improvement, but nothing approaching the small miracle I wished for. Alexander was hard, I walked back to the car exhausted. 

There was better carryover in the garage come evening, and it lasted four and a half laps. Then the brain suddenly grew tired, so we stopped.

I love those periods of clarity like the one this morning. They keep me going.

Thursday, December 30

I slept in chunks, had breakfast and slept another two hours, all of it ambrosial. Walking is clunky, so far today there is no echo of yesterday morning’s half hour of nearly normal. That’s okay, the brain needs to recharge. Still, I am hoping for a brush with brain health again sooner rather than later.

Just to note, RLS has been essentially absent the past few days, as have the wooden legs and shaky arms. I make no declarations, there is nothing to assume they won’t be back, but for the record. Also for the record, typing today is not so bad.

I must report something that happened during another nap I took after lunch, also ambrosial. At one point the usual dream imagery was interrupted by a female presence that introduced herself as my mother. I had a close up of her face, and there was a strange resemblance. She leaned in and it occurred to me that I was dying, and that it was okay. This lasted for a short while, then I returned to my usual dreamscape and forgot about the experience until about an hour after waking. I checked the book, Recovering from Parkinson’s because I recalled something similar in one of the patients’ experiences, and found a phenomenon called “brain shift” that described pretty closely what I’d just experienced. (for those of you who have downloaded the book, page 342).

Since we’re catching up, pins and needles continues but in a much milder form, mostly in the face and hands. By chance when looking for brain shifts, I read a description of mid-recovery tremors that fit my current experience; that the tremors, when they manifest, are only muscular, they lack a brain component, and are therefore without that deep sense of disquiet that I associate with them historically. The internal tremor is gone.

Another change that has come to the surface in the last day or two – when a negative or judgmental thought passes through my brain, I am able to let it pass without attaching myself to it or becoming fascinated. An early gift from that gift; I don’t need to play to the largely imagined skeptical peanut gallery. Know my truth.

Friday, December 31

The day has been about sleep until 14:30, when I paced the hall for twenty minutes to make sitting tolerable. Then I read Majesty, a play I wrote over a span of many years but had not looked at in two. If I can fix the opening there’s a very odd play about Emperor Norton I, a very odd San Franciscan.

Starting Wednesday my left knee occasionally gets a stabbing pain and sometimes threatens to buckle. It was injured in 1971 but never really bothered me. Nothing bad, just strange, and to be noted. I’m desperately tired of insufficient movement, but managed to put away a dozen garage laps this evening, some of them in relatively good form.

Typing is terrible.

It is a struggle to stay awake. And remained a struggle until midnight when I suddenly became super alert. I have to reset my clock. [The alertness didn’t last.]

Saturday, January 1

Memories of Christmas trees and the Rose Parade on television. 

The last stretch of sleep came in a good four and a half hour package, so we got to the garage early. But mobility was bad, and I wore out after four laps. Then I slept two and a half hours in the recliner with only the slightest hint of incipient RLS that never came to fruition. Another peaceful forty minutes followed lunch.

I had a Zoom meeting with the director and artistic director for Soup. My voice was clear and strong during and after the meeting and until bedtime. Right after, I was so energized that I did twelve garage laps before I even thought to ask Yuri how many we had done. Then I worked on targeted sections of the play, typing not perfect but not terrible.

Yesterday, I could hold my pee for three hours, tonight I’m doing good for an hour, and typing is a disaster. Also very uncomfortable watching TV. And moving around the house is awkward. Friend says this will pass. I hope so. The worst is that I feel helpless to do anything to improve.

Sunday, January 2

I slept from 01:30 to 14:30, not exactly straight, but nearly, and now that I’m writing this I realize that I’ve been sleeping more or less on that schedule for several days, now. Massive amounts of sleep is a recovery symptom, one that I’ve experienced before. And I believe that this one began shortly after Wednesday morning’s period of normal walking, which makes sense. The brain is repatching itself.

Monday, January 3

I slept the day through except for ten very sloppy garage laps.

One very significant change, however. For several years finding a comfortable position in bed to fall asleep in has been a constant challenge. For the past few nights, not so. I had sometimes reached a workable compromise in that I could fall into a position and freeze – resisting the urge to adjust – and eventually fall asleep. But this is back to normal. I can adjust or not, be comfortable, and sleep well. Believe me, it’s a huge big deal. I hope it lasts!

Knee pain is gone for now.