Month: March 2022

Tuesday, March 22

After a fairly stable walk on the Duomo’s sagrato, we stopped at La Magnolia to meet the Ukrainian mother and her four children. (Roman explained that the City pays for refugee lodging at a reduced rate offset by a tax break.) He rang and the family emerged several minutes later looking like they were going to a picnic; Mom, three girls and a baby (it was later explained to me that the father and the eldest – a boy of 18 – had remained home to join the fight.) The youngest of the girls (named Dasha) looked at me, smiled, and handed me a chocolate wrapped in green foil. Then she smiled some more, and went off to make friends with a small dog. Roman wheeled me off in the midst of the family and parked me in the sun opposite the supermarket while the family provisioned. It all seemed so normal.

Something I’ve wanted to mention, but forget. I have an itch that extends upward from the middle of my spine, and ends at about the hairline above the forehead. It is there at least 40% of my waking hours. I have no idea why.

I’ve continued to do stretches once or twice a day. While my muscles are incredibly tight, stretching them is easier every time I try.

Wednesday, March 23

I slept in hour long chunks with walks and exercises in between until about 04:30 when I gave my lower back a good stretch and fell asleep immediately for four hours straight. Perhaps because it was half a restless night, it was a very difficult walk on the sagrato, this morning. I slept through massage, essentially slept through lunch, then napped in the sun for two hours more. The evening walk started heavy, but I was on my own, on the sagrato, for half a kilometer after the fourth lap.

Confidence is back. Typing is great.

Thursday, March 24

This morning was a repeat of yesterday (even though last night’s sleep was less problematic) except that walking was a tiny bit easier. At about 11:15 I was hit hard with a limp period that lasted well into my first nap that began around 12:30. I slept, did some computer chores, slept again, more chores, and another walk of similar shape and effort as this morning. And if it hadn’t been suppertime when we arrived home, I could have napped again. During the day I saw several of my favorite people – Claudia, Maria, Erika, Giorgio, and Roman was traveling in a humorous vein – but all I could do is nod and grunt; nothing mental wanted to function. I could barely understand Italian, or English, or body language. And when I wasn’t sleeping, or wishing I could be, I was hungry. A bit like a baby.

Friday, March 25

It was a moderately difficult stroll in the garage this morning, that cleaved more or less to the recent norm. Slept from 11:00 to 12:30. Alexander technique in the afternoon helped ease what by then was a pretty massive frustration with everything. The evening walk was very pleasant. Am taking magnesium for the restless legs and it seems to help.

Saturday, March 26

Very difficult walking the sagrato, this morning with Roman. In all other ways I felt great. It was difficult falling asleep last night, and that may have contributed to the difficulty. Natalia took me for the evening walk. The objective was to pace the garage, and since the garage is close, she suggested foregoing the wheelchair and doing the 30 meter trip on foot. As we passed the alley between buildings, I was seized by a notion of walking to Piazza Gonzaga. She agreed. Once there, I wanted to walk to Sant’Agostino, and having done that, a walk to the cliff at San Giovenale. The way back is slightly uphill, but we made it without my having to rest. And I did 30 meters or so without holding on to Natalia. Huzzah!

Sunday, March 27

I slept immediately last night, and woke after two hours as I usually do, but it was two more hours before I could sleep again. The reason was a combination of being too warm (simple solution, I had worn the wrong pullover, but it was more than an hour before I realized the mistake) and as soon as I lay down I was plagued by pins and needles. Once asleep, however, it was glorious.

But walking the garage was slow and difficult. Friend said not to worry, that it was a matter of clearing out channels and developing new energy flows. Okay, I can accept that.

Restless legs bothered me less last evening while watching TV, so I will continue with magnesium and drinking lots of fluids. 

This evening, Maria (Roman’s wife) wheeled me to this end of Piazza Gonzaga and we walked from there to the cliff, where we spent a long time admiring the view and lamenting Ukraine. Walking was not as fluid as last evening, but I’ve read where the brain needs time to catch up after a ground breaker like yesterday’s marathon. So be it. I slept a lot today, and am bone tired tonight.

Monday, March 28

Morning walk was difficult, walking around the house even more so. Feeling very uneven – disturbed in some deep way. I slept well, and the couple of times I had to, getting out of bed was easier than usual. But after lunch I felt wadded up; wanting to walk vigorously but utterly unable to, wanting a longer nap in the sun, but dreaded getting into position in order to do it. The confidence of early this morning has evaporated. 

I finally gave in to the second nap and feel vastly better for it (though walking remained restricted). But my walk must be improving overall, because many of the associated muscles have been sore, some of them for almost a month now. To watch me walk the word “normal” would not be the first to spring to your lips, but there must be something normal going on. 

Tuesday, March 14

I slept eight hours with only one brief interruption at about 02:00. There were other points during which I was conscious enough to note my twirling and rolling between positions and that it was impressively agile. Then we walked the garage. By 10:15 I could barely remain awake. At 10:55 I got into the recliner and immediately slept until woken by lunch call and an twitching left leg. After lunch I returned for what felt like a fifteen minute snooze, and woke at 14:30! 

The evening walk was very instructive. There is a pattern. The first two garage laps I shuffle and groan and hold onto Roman’s arm like dead weight. By the fourth, the feet are silent and I’ve lightened up. Then I walk solo with Roman shadowing. Tonight, at every turn I took a pause to straighten posture, beat my chest like a gorilla – or like Tarzan, or Charlemagne, or Harriet Tubman, some other strong individual – and went forth with atteggiamento sicuro.  It was exhilarating. Then we went to Blue Bar and enjoyed Antonny’s amazing social skills.

Wednesday, March 16

We kept the walk routine, morning in the garage, evening at the Duomo. In between I slept a lot, and had a wonderful lesson in Alexander Technique.

Thursday, March 17

Slept well, woke spritely, was already tired when we went to the garage at ten. We came, we walked, we left. I slept through the leg massage and kept falling asleep through the back massage (given in a chair, so not so easy to do). I went straight to the recliner at 11:10 and slept profoundly for a bit more than an hour. Then lunch, but the nasal mucus flow began about three-quarters through and I lost interest in food. Roman left and I retreated to the recliner and slept for another hour. Then I spent an hour catching up on news public and personal and slept another hour. I woke feeling fantastic.

Back to the mucus; has anyone had the experience of taking Zyrtec for allergies, having it work for a day or two, then not at all?

Back to sleeping a lot; it is a recovery symptom that, for me at least, comes and goes periodically. I rather like it, but it’s hard for me to explain in Italian. So sometimes I feel like a sleepoholic who hides my naps and denies that I am as sleepy as I act and feel. That deception doesn’t keep me awake nights, but I do have a need to confess.

This evening we walked the Duomo. I did over half the distance on my own. I learned a lot. Everything leaned heavily spontaneous. Confidence. I brimmed with confidence. Doesn’t matter about what, it is a clear, crisp state of being that we can carry with us like a rose. By 8:30 that rose had withered, but is wasn’t dead, just not as crisp. As the flower drooped, the body grew a bit stiffer, but not for long. The confidence lurks, promising to bloom anew, and I am confident it will.

To add to the list of little things: for the last two days I’ve been able to finish a beverage to the last drop, something I’ve not been capable of in a long time because I couldn’t tilt my head back. This is a special thrill when the beverage is hot milk and honey.

Friday, March 18

Walking this morning was great. There was no shuffle, I did more than half on my own, and speed was entirely under my control. Then off to the dentist for a cleaning, followed by a pizza by Tempio di Etrusco’s new pizzaiolo (and my longtime favorite pizza maker) Kamal. It was telling that I ate an entire pizza without provoking more than a few drips from my nose; at home it would have been, well, a mess. There is something about my apartment to which I am allergic.

Having enjoyed a wonderful morning, I took a short nap and woke feeling really strange. Was up for an hour, then slept another thirty minutes and felt better. The confidence of the last few days is taking a rest and is replaced by a non-specific, mild dread. Also, sitting for more than a half hour at a time is very uncomfortable. But even at home, when I get up and walk to relieve the discomfort, my stride is smooth. But sitting is a parade of clenching muscles, mostly in the thighs. A couple of minutes pacing resets them to neutral, but it isn’t long before they are at it again.

Typing has been good all week.

Saturday, March 19

The morning walk was up to par again, and I bettered it in that arms were loose and free – even showed a bit of swing. I feel some confidence returning. After massage and bathing, I sat a few minutes early to nap and fell asleep before I knew what was happening. Slept for about 90 minutes (that, after a solid eight last night, with relatively easy turnings and rollings) and was woken again by muscular jumps and twitches. I sat back down after another 90 minutes and slept undisturbed by anything for an hour.

The evening walk went from the top of Piazza Gonzaga, two full circuits, a stroll to the cliff at San Giovenale, and a return (about half of which was on my own). It was difficult, but good to do.

As evening comes I feel the strangeness of the past couple of days creeping back, eroding the confidence. Trying very hard to keep the medulla oblongata at full flow, but it seems to top off at eighty percent.

Typing is very good, as are all things requiring manual dexterity.

Sunday, March 20

I begin this entry very early Sunday, in fact just after midnight. I rewatched episodes from season one of The Marvelous Mrs. Maisel, earlier, with my legs and back hurting and clenching, but even with those distractions I enjoyed the episodes as if they were new. There were moments I had not remembered at all. I took a needed break from sitting in front of the television, and read a piece of Recovering from Parkison’s. Passages I’d read before were not at all familiar. 

I had spoken with my friend Nan earlier in the evening and out of nowhere she asked if I did stretches at all. I used to. I took a forced break when I injured my Achilles tendon almost two years ago, picked it up again once that had healed, then stopped again during and after hospitalization last summer. Last night I got down onto the floor and restarted. It seemed impossible at first, but Friend kept whispering that it would quickly grow easier, so I persisted. 

This afternoon I tried again, and what was nigh impossible last night was relatively easy today. I’m only doing four or five poses/stretches so next I will try to remember my old routine and we shall see what happens.

The other major change requires some background. One of the principal goals of recovery is to reactivate the striatum and thalamus in the mid-brain; both are involved with management of dopamine production and distribution. Brain scans have shown that when a person is in heart-felt prayer, or anything like it, these areas become highly active.

So, what Janice advises is to form a parasocial relationship, that is to replace our inner monolog with a dialog with an invisible friend, someone close who has died and with whom you had an easy, humorous, and loving relationship. I had read that section in Recovering From Parkinson’s at least a dozen times, but last night saw it with new eyes. A natural shift in who I had chosen for my Friend had occurred a week or two ago that saw three connected relationships functioning as one, but another shift occurred last night when I finally understood the importance of the connection’s being a deeply personal one, like a best friend or favorite aunt. So, with all due respect I thanked and turned aside from two thirds of my inner troika and began to converse directly with my long-deceased best friend. The difference was immediate and profound. Love flowed. I felt safe.

Going over familiar territory for another look is rarely a waste of time.

Standard reports: walking unremarkable, sleep (a lot of it) very pleasant, typing and dexterity better than average, voice is often so strong that I occasionally startle myself when I speak.

Monday, March 21

I slept in any damn position my body fell into last night; there is great freedom in that.

Welcome to spring! Benvenuto alla primavera!  We stayed out longer than usual this morning in celebration, and when 11:00 came around the limpness exploded upon me like a stage effect. I began a recliner nap at 11:30 but was somehow able to remain limp and tense at the same time. A quick lunch ensued followed by a shift of venue to finish the nap – on the bed in the sun. That was very relaxing, so I napped in bliss until 14:00. Then I napped again for thirty minutes at 16:00. Altered sleep patterns are a recovery symptom (and usually in the direction of excess) but it goes on and on, takes a break for a few days, then returns overwhelmingly. Fortunately, most of what I could categorize as work does not demand my wakefulness these days, so this interpretation of narcolepsy is tolerable. 

When Roman arrived for the night shift, he was telling me about our needing to stop at B&B La Magnolia on the way to the Duomo. I missed some of the references so didn’t get what he was trying to make me understand. 

Then I did.

“A Ukrainian woman arrived here yesterday. She knows no one in town, doesn’t speak Italian, and has four kids with her, one of them an infant. Serena at La Magnolia is giving them a place to stay. I got her a few things she needs,” said Roman.

I burst into tears. We all need a good cry these days.

Tuesday, March 7

Rolling around and flipping over was easier last night if not exactly graceful, but getting out of bed was back to the terror it was five or six weeks ago. I slept in chunks, too (also something I had hoped to leave behind) but the sleep was good and I was comfortable when I wasn’t moving.

The morning walk was stellar and didn’t wear me out.

The evening walk was lunar and totally wore me out. That, or the evening blank spot, started a half hour early. (By the way, Janice says those periods of not wanting to move are normal and that deep healing occurs.) “Wore me out” yes, but not in such a way that it led me to nap. I was stunned but energetic, and when the stunnedness went away shortly after nine, the energy remained and prevented sleep (or any inclination towards sleep) until almost five in the morning.

Wednesday, March 8

Walking happened, twice; nothing remarkable about either.

I had a really wonderful session with Monika in Alexander technique, got so relaxed for a few minutes it made me wonder where the habits of tension came from.

Monika left and Roman came in. He was elated having run into Monika on her way out and a half dozen of my friends between Santo Stefano, where Ukrainian relief efforts are centered, and the farmacia. We were able to name or identify all of them except for the tall Italian lady with long hair (and sometimes a dog) whose name has two “L’s”. I’ll be thinking about that for a week. (It turned out to be Lucianna. L, M, N – close enough.)

All symptoms, both residual and recovery, match walking; nothing remarkable, either way, except that around 7 pm I entered a blank period, stronger than most.

Thursday, March 9

I slept remarkably well, plus Roman let me sleep until 09:15 so we didn’t leave for a walk until after 11:00. My body decided to enter a blank phase promptly at 11, so walking was very difficult. Then at 13:00 I snapped out of it almost on cue. Then an hour or less later, I became extremely sleepy, so I napped for another hour and was glacially slow for thirty minutes or so afterwards. Through all of that (except during the nap, of course) typing remained accurate and relatively fluid.

Walking was easier this evening, though it was four laps before I warmed up.

It seems that today is a double regards blank periods; at seven I felt one descend like a warm blanket. The next two hours were profoundly whatever “blank” is (the word doesn’t really describe the phenomenon) and even though there is nothing unpleasant about it, tonight I am looking forward to its finishing.

Friday, March 10

Walking was hard this morning. Part of that was that we got to the sagrato at 11:00, about the same time as I entered my “blank” spell. After lunch I rested for a few minutes, not sleep, more like meditation, and at around 13:00 I felt the blankness turn off with a distinct but gentle surge of energy. I seem to have convinced Roman to get me out and walking by ten.

I’ve been to places before similar to what I experienced today, but there is something different. Yesterday, dexterity was awkward even though typing was not, today both are smoother than usual. And I feel confident in ways I have not felt in years.

But the evening finds me with a knot in my stomach as I contemplate Roman and Natalia’s families in Western Ukraine where Putin is now sending his bombs. Give to charities aiding Ukraine. Please.

Saturday, March 12

I continue to feel confident today, though I have no idea what I feel confident about.

Roman changed the morning schedule today to give me time to be limp between 11:00 and 13:00. What a blessing! I lay down just before limpness began, and rested in bliss until lunch call at 12:20. It felt like a healing, too. I tried to finish the two-hour period after lunch, but all I did was tremble.

A twenty minute nap just before Natalia arrived either resulted or had nothing at all to do with the most difficult walk I’ve had in a couple of months. Plus my voice was cloudy. And I wore out after about twenty meters.

Summary of phenomena that I’ve experienced less of recently (to cheer me up); wooden legs after a nap haven’t occurred in weeks; during leg massages (which Roman does daily – poor me!) muscles don’t twitch and contract; I can enjoy lower temperatures in the apartment; for the time being at least, the right arm tremor seems to have gone away (again) except as a reaction to physical or emotional stress; what I could interpret as restless leg syndrome seems actually to be a recovery dyskinesia; I’m sleeping comfortably again (big yippee, that one); knees and ankles rarely hurt at all anymore.

Sunday, March 13

Natalia and I walked the garage this morning. The first four laps were warmups, not pretty but necessarily so. The next two resembled real walking; quiet, light. Then Natalia told me to walk on my own, and it was glorious for four more laps. One odd thing, walking so normally put the brain into a panic – I’m not safe, I have to hold onto something or I’ll fall – and the arms trembled and tensed like I was scaling a cliff without shoes on. Or something. But the walking itself was almost pre-Achilles injury, meaning my walk of two years ago come May. I so look forward to more!

We had adjusted the schedule to allow the two-hours’ blank period that begins at 11:00, so were home and finished by 10:30. I did some stuff at the computer (writing the above paragraph for one), then suddenly lost all desire to move at 10:55, so I took myself, slowly, to the salotto and spent time in the recliner in a state of suspended animation until lunch was called at 12:30. It was the first time I’d been able to fully honor that (almost) hour, and it felt right.

The evening walk replicated the morning, only there were four laps assisted and seven on my own, the arms were not as reactive, they occasionally swung, and I rocked from side to side like a real person. This is good.

Monday, March 13

Because the weather this morning was pleasant, we chose Piazza Gonzaga (on the way to San Giovenale) as our walking grounds. I was hoping for another day like yesterday. But the garage is smoothly paved and level, whereas Gonzaga rises and falls and tilts; nothing radical to an average walker but a raging topographical wonderland to someone who is essentially re-learning how to use his legs. The result was a lot of scraping and lurching, and solo walking was double that.

We made it back home by eleven, and I was in the recliner ten minutes or so later, but RLS (or recovery dyskinesia?) asserted itself in my right leg after about twenty minutes, so the limp period that arrived pretty much on time didn’t receive its due honor. I made amends and slept for an hour at four.

We walked the garage this evening, and I was able to do half of it without Roman’s physical assistance, then we went for a “stroll” towards our favorite gelateria. On the way we meet my friend Emilio, he asked how I was, Roman made a legend of my solo pacing, and Emilio supported my gathering health with an Italian phrase, that because of his mask, he had to repeat several times: atteggiamento sicuro. I just looked it up. It means confidence.

Tuesday, March 1

I slept soundly but only for three hours, which left me groggy all morning. Around 7 pm a blank period began during which I wanted to cease all movement. That lasted until about 9 pm, but I remained tired from lack of sleep until bedtime.

Wednesday, March 2

I slept well for about 6 hours but not comfortably. Walking is in good form. My blank period was again from 7 to 9 pm. I had a very good Alexander lesson in the afternoon. Pins and needles in both hands was very strong, though mostly confined to morning.

Thursday, March 3

Slept well enough, but at least for the first half of the night the relative ease of moving, positioning, and rolling over was missing. That came back somewhat as morning approached, but never reached the comfort level to which I have lately become accustomed. In similar fashion, the first fifty meters of the sagrato were smooth and silent, then I suddenly wore out and the rest of the walk was a drag. The day’s blank spot seemed to have been from 11 to 13 today. I napped briefly, ate lunch, and napped again for ninety minutes. I woke up thinking of Roman’s countrymen huddled in subway stations not knowing if they will have a place to live next week at this time, and of the needlessness of all they are going through, and my heart broke.

The evening walk was a bit better than the morning, but same general shape. A headline in the local paper informed us that “The laughter of American students has returned to Orvieto,” which I found charming. Typing is nearly back to pre-PD levels!

Friday, March 4

As we exited for the morning walk, there was a woman of about fifty, with rainbow colored hair and a voice like a French horn, on a video call while she moved down the middle of Via Pecorelli against traffic. I was tempted to judge her, but decided not to, and she became beautiful. That beauty spread across the city and all the creatures in it. 

At the other end of the morning walk, I was parked outside Farmacia del Moro waiting for Roman. A toddler of maybe two-plus came out with his mother. He stopped and we exchanged glances. His mother breeched the crowd and as they moved on the boy twisted back to me, waved, and shouted a hefty “Ciao!”. It rang out like a gong.

Movement is a bit compromised today (meaning beyond the usual). I think the sadness of Ukraine is affecting me. I also watched too much of a crime series last few nights; well-done but darker than is good for me – imagined badness can confuse a vulnerable brain.

The little boy with the sparkling eyes banished that confusion with a single word.

For the daily list; almost no pins and needles, could not identify a blank period, walking outside the apartment was exceptionally smooth, walking in the apartment exceptionally slow. Typing is almost normal.

Saturday, March 5

The early part of the night, my body was like a sock loosely filled with lead pellets. Things got better after I stretched my lower back, and I slept well, but turning and rising lacked the relative grace of a week ago. Similarly, the morning walk was okay, but was a lot more deliberate than I want it to be. Then I had an 11 to 1 blank period, and slept for most of it, plus an hour afterwards. And another hour after that.

The evening walk in the garage (there was a cold wind a-blowing) featured yours truly walking unassisted for four or five laps; okay, Natalia helped the turns, but otherwise…

Typing continues to be good, almost normal (depending on when I compare it to).

Sunday, March 6

This afternoon at four began a demonstration of solidarity with Ukraine. About 250 people, mostly Ukrainian, gathered in Piazza della Repubblica displaying their colors, and singing along with traditional music and the Ukrainian national anthem (I obviously sang only with my heart) and listening to music by John Lennon, Bob Dylan and others. There were speeches in Italian and Ukrainian, including one in both by the bishop of the Greek Orthodox Church. Then singing on our own, and led by young boys in scout uniforms, we walked to the Duomo while Italians lined the streets watching and waving. Included in the crowd were dozens of little children, only one dog (but one of my favorites) and two women dressed in white lab coats wearing clown noses.

There was a lot of hugging. Roman and Natalia made sure I stayed warm. The atmosphere was a mix of disbelief, pride, and deep affection. Almost everyone attending has family in harm’s way.

Monday, March 6

Both walks today were good. Let’s call them semi-spontaneous.

Beginning Tuesday of this week, the ease of turning, rolling, and placement in bed that I’d been enjoying so much since early last month began to wane. This has been very disappointing to me. On Monday I began again taking L-Tyrosine morning and evening; it is a cofactor for dopamine and by some reports is supposed to help with symptoms of PD. I’d tried it before a couple of months ago and found it seemed to enhance rather than diminish symptoms, so I quit and asked Janice (The Parkinson’s Recovery Project – www.pdrecovery.org) what I should do. She recommended against it.

But I’d invested good money in a bottle of the stuff so I decided to try again. I quit on Thursday, and the nighttime difficulties continued until last night when things began to crawl back to what had become normal until this week. I speculate, but I’d advise my fellow travelers to be careful.