Author: dallanz

Tuesday, April 12

I’ve read that the brain takes 72 hours to adjust to new physical patterns, which may explain why this morning’s walk was the exact opposite of yesterday evening’s pleasant surprise. My legs were rubber, stability was almost non-existent, and while the gait improved slightly, it never reached the minimum on the imaginary quality meter. Be still, my heart.

RLS is very strong and annoying. There are episodes of recovery dyskinesia but they are poses, whimsical flips, and amusing gestures that involve the arms, hands, and feet, and are not annoying. RLS is mainly in the legs and is deeply uncomfortable.

The evening walk between Piazza del Popolo and Corso Cavour was better than this morning at the Duomo. It reminded me of walks of a year ago when we had to stop frequently for me to grab a pole and rest, and when talking while walking left me breathless. It was a good reference for how much I’ve improved with the exception of days like these.

Friend says not to become discouraged, that discouragement is self-fulfilling.

Wednesday, April 13

Morning walk was a shambles, in part because the nail on my right big toe hurt. Fortunately, we were to meet Claudia at Maria Rosaria’s at ten, so while we were there we made a mini-pedicure appointment for eleven, and my toe got scraped and prodded and fixed. But despite a good night’s sleep I felt good for nothing all morning, so immediately after lunch I took a nap. A nap that lasted three and a half hours.

The nap rested me, but deepened the sense of ennui that followed me around this morning, so our evening Costutuente/San Leonardo circle was more organized, but still listless.

When I was a boy, my father, who was an avid restorer of antique cars, was given a 1913 Mighty Michigan touring car that had been stored in a barn for thirty-five years. The barn doors had to be cleared of soil and composted vegetation for them to open, and the car itself was a mess, but it had an electric starter, so my dad and his brother hooked up a fresh battery, topped off the oil, and gave it a try. The engine ground away and eventually turned over once or twice. They switched off the ignition, let it rest, and gave it another try. It turned over a few more times, sputtered into action, and died. They repeated this several times, until it finally caught long enough for them to back it out of the barn. (To be safe, they towed it home.)

I often feel like that car, and like my father trying to start it.

I watched the new West Side Story. I started to cry almost immediately and never really stopped; for the sheer artistry.

Thursday, April 14

I’d say there is something to the 72 hour rule noted on Tuesday. This evening’s walk saved my day. When we arrived back in Piazza Gonzaga after admiring the stunningly beautiful view from San Giovenale, Natalia suggested I walk on my own to where we had parked the wheelchair. I wobbled a bit at first, but then I began to imagine what real walking would feel like and lo! I began to walk for real. Not a full recovery of skills, but close enough that it made Natalia giggle. As we approached the wheelchair I panicked from excitement and fell into tiny shuffles, but only for a half meter. For the next ten minutes I kept repeating “every day I need to walk a bit on my own” until I’m sure Natalia began to think I had lost my mind. But I was a little discouraged all day (contrary to Friend’s advice) and those twenty or thirty meters absolutely changed my view of the world.

Friday, April 15

It is surely spring. It is also April, so spring takes a week’s holiday when the temperatures drop precipitously on Sunday. This morning’s walk was pretty good, but I never quite rose to the point of volunteering solo meters, and neither did Roman suggest them. My marathon sleeping is on another break. I slept well last night, but when I offered myself a nap, my body gracefully declined. Which leaves me wanting to walk on my own out in the spring; but that’s surely not happening.

Saturday, April 16

Confidence has returned. So has a massive need for sleep. Consequently, there is not a lot to report, except I did walk solo again on Piazza Gonzaga, and it followed the same contours as before. Natalia noted that I walk much better on my own than when I am assisted. I’m not sure what to do with that information.

I should mention that for the past week I’ve had muscle pain on the inside of my thighs at the groin. The pain would only show up while turning over in bed. Then late yesterday the pain moved further into the groin and localized on my right side, and hurt only while rising from a sitting position (or turning in bed). According to Recovering from Parkinson’s this is caused by improper flow in the Du or Stomach channel, and will pass. I find that reassuring.

Sunday, April 17

The pain in the groin was still strong this morning, but has begun to gradually disappear.

The big news was that after going to sleep at midnight, I woke around 02:00 and slept not again until 08:00 when I snuck a half hour in before Natalia woke me. What is odder, I’ve been unable to nap in a satisfying fashion all day, not even after a long walk on a crowded sagrato this morning. It is a problem of being unable to relax muscles, which is not a part of my usual repertoire. So, I looked it up. Sudden awareness of stiffness is a harbinger of the return of sensation and function to those muscles.

Internally, for the past few weeks distant and vivid memories are coming back to me; events, friends, moments long buried suddenly there again, and without judgement or excessive emotion. It’s rather wonderful.

Some days I cry at the least (positive) suggestion, most frequently being overwhelmed with gratitude, but also when confronted with beauty in anything, beauty that connects to something great and vast and indescribable.

I was finally able to nap for thirty minutes at about five, and woke much improved.

By the way, for weeks people have been telling me that I look much better. I just now realized that they are seeing the return of muscle function in my face. This is what recovery looks like!

Monday, April 18

That pain in the groin that seemed to be disappearing bothered me all night, and still hurts when I rise from sitting, turn in bed, or cough. So, sleep was often interrupted. I did, however, nap for three hours this afternoon. Anyway, that thing erased all attention to anything else.

Except this: the mucus flow after meals that has been a regular feature of eating for I don’t know how long, suddenly ceased today. I mean, almost completely. I have no idea why.

And this: today is Pasquetta. Seconds out of the front door, Ida and Hans drove up, “There is a solid line of traffic from the autostrada to Piazza Cahen,” she reported. Minutes after that as we turned into Piazza della Repubblica it became obvious that a whole lot of Romans had chosen Orvieto as their after Easter getaway. Piazza del Duomo reminded me of Bethesda Terrace in Central Park on a Sunday afternoon. I found it glorious.

Wednesday, April 6

A turbulent night, not without sleep, and one that would have been treasured several weeks ago, but for the first four hours my awareness was stuck in how difficult it was to move. After that, looser, lighter. In between I paced the hall thirty or so times.

Walking was heavy this morning, awkward this evening, and tiring both times.

I did a lot of computer work, mostly getting finances in order.

Thursday, April 7

I discovered during the night that if, when I wake unable to return to sleep, I do thirty sets of leg lifts at my walker, that I sleep instantly afterwards. This happened twice. Good news because it’s faster, easier, and safer than pacing the hall. So, I slept well, got up chipper and ready to roll, but when it came to leaving the apartment, I could barely walk. Then after wheeling around town (poor Roman) looking for a hat, going to the Duomo showed the same result. After two very slow and exhausting laps I gave up. After lunch I slept two hours.

The evening walk in a circular route between Corso Cavour and Piazza del Popolo was laborious but better than this morning’s. 

Aside from walking (and typing) I feel good!

Friday, April 8

Habit.

This is speculation founded finally on observations I made during our morning walk in the garage. I risk making a further fool of myself by writing this, but it seems that symptoms of PD have reduced themselves to excessive saliva and some restless leg syndrome, and with the latter it may be a recovery dyskinesia, I cannot honestly know for sure. Everything else is habit or damage repair. The habit of applying tension to remedy a feeling of not being safe. Damage repair for muscles that have atrophied over the past twenty to thirty months, and nerves that are frayed from fifty-plus years of holding on to avoid panic.

Alexander technique teaches how to think a muscle relaxed. I applied that during this morning’s walk and it worked every time. I could also see how the arms were connected to the legs and the neck was connected to the pelvis. The trick is to learn to sustain the relaxation.

Today before Alexander, I spent a half hour meditating (sort of) to one of those open the heart chakra musical sequences which I enjoy but am skeptical of. When Monika arrived she took one look at me at said “you are glowing, brilliant”. Maybe my skepticism is another habit that needs relaxing.

Dexterity is good, as is typing.

Saturday, April 9

In my eagerness to be done with this process I may have jumped the gun yesterday. Walking was easier this morning, and I was able to relax my body into it more than yesterday, and while there are definitely recovery symptoms at play, there is more going on (it seems) than atrophied muscles and exhausted nerves. Maybe. I have difficulty with seeing things for what they are, sometimes.

I’ve been tired all day, and come evening, even more so. Bone tired. We walked Piazza Gonzaga and the potential was there for a good one, but the nail on my left big toe hurt badly and one lap wore me out, so we finished off with the wheelchair.

Sunday, April 10

That I thought my sleeping a lot phase was over, was a mistake. Walking was very difficult at first, but got better. Sleeping was terrific all night – and day – long.

Monday, April 11

A varied day, wonderful moments of clarity and calm interspersed with trembling, tight, painful muscles. 

But what a surprise — the evening walk was wonderful; muscles loose and flowing, balance better than usual, half of it on my own. Mind you, progress in these cases rarely follows a straight line, so I may not see the like of it again for weeks, but the immediate payoff was nonetheless welcome.

Tuesday, March 29

I hesitate to write anything, today, for fear that it will sound either redundant, ridiculous, or will be something I have to retract or qualify in a few weeks’ time. Well, had I applied those restrictions six months ago nothing would have been written at all, so I guess I’ll take my chances – but keep it simple.

Maria Rosaria changed my ugly feet into less ugly ones through the use of scrapers and wheels and other tools that looked like they belong in a dentist’s office. Her work reduced pain caused by callouses and other dead-skin phenomena. 

I slept a lot, and always soundly and with great pleasure.

I’m redirecting my efforts at being open to energy from the medulla (base of skull) to energizing the pericardium (heart).

Wednesday, March 30

Walked as usual, slept a lot and well.

Through music, meditation, and simply paying attention, I can feel the heart energy opening up. Every therapist of any kind that I’ve ever been to has emphasized the need to open my heart. It takes a particular kind of courage. And today I’ve had episodes of energy pouring through the medulla oblongata without any conscious effort on my part, so attention to the pericardium pays dividends!

During the evening walk, one lap involved the swaying and swinging that is typical of a healthy gait. It happened spontaneously and I could not summon it back.

Thursday, March 31

It seems like I slept more than I was awake.

A woman who keeps a shop on Piazza del Duomo greeted us and made sure to note that my walk was improving. I have an audience!

Friday, April 1

I walked, I slept, I slept some more.

Saturday, April 2

Repeat. Except…

While watching television I usually spend a lot of attention trying to comfortably position my right arm, and except for a few minutes now and then, I fail. Last night the arm gave me no grief at all. That, to me, is pretty major. I hope it’s a new norm.

Sunday, April 3

Did some street-walking before the garage, this morning. Umm, I mean…

Spent the rest of the day doodling at the computer (I now know a bunch about Diocletian’s Palace in Split, Croatia including the factoid that much of the stone that went into its construction was quarried on the island my paternal grandmother was from), and wishing with my aching thighs that I were able to take a brisk and spritely stroll at will and at length.

I got my wish, sort of. Maybe the stroll was neither brisk nor spritely, and I held on to Natalia the whole time, but we walked to San Giovenale and back without any real rests, so good. Wore me out, it did, so I’m thinking I ought to take that route more often than once a week.

For the second night in a row, I was up for three hours after sleeping one, and my body felt impossibly heavy.

Monday, April 4

The last few weeks have been characterized by needing lots of sleep. That phase is taking a break.

And after yesterday’s stroll to San Giovenale, this morning’s walk was with lead feet. This evening’s was better, and my legs (although sore from the exercise) feel stronger and more stable.

I am also studying Italian again with Yabla.com, and am cleaning things computational, neither of which I have felt like doing for almost two years.

Janice has said that recovery often begins inwardly, and that the physical symptoms can be among the last things to go. So much has changed internally in the last year or so, I can’t begin to describe it all. When I write my book I’ll let you know; all the changes will be in there, encoded.

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.

Tuesday, February 22

I’ve noticed a tendency to go blank at about 11:00 am, and to stay that way for about two hours. Because Roman has my days scheduled, I move regardless of my inclination not to. The result is two hours of euphoria when everything is breathtakingly beautiful. Okay, the view from the cliff this morning at San Giovenale was especially spectacular for its vibrant colors washed in air so clear it sparkled, but so was the plywood and corroded wire protecting a cellar door under repair down a rusticated alley. All that is a variation on a recovery symptom, which makes those two hours doubly special.

From the list of little things; I’m walking with my whole foot, rolling from heel to toe, something I may have never noticed until I stopped being able.

We went to Blue Bar after an evolving walk on the sagrato, visited with Erika, and petted her dog Teah. The small repetitive movements it takes to pet a dog properly have been beyond my skill set for many months until today; big bonus. Very nice end to the active part of the day. I was very tired after supper, listlessly watched some video, went to bed earlier than usual and slept eight hours.

Wednesday, February 23 

We walked nearby Piazza Gonzaga, but not long enough to get the kinks out. Alexander lesson was arduous but very effective (and coincided with my blank period). I’m supposed to lay on the floor of the study for twenty minutes a day but getting down and up again is rather demanding. We shall see.

I napped after lunch and so sweetly it surprised me. Naps in the recliner of late have not been so rewarding.

The list of little things: typing is especially good, the right arm continues to be loose, pins and needles in my hands are very intense (and spread when I cough).

The toddler metaphor holds; a few days of euphoria, solid energy, and occasional physical spontaneity, followed by being really tired and cranky. Nuff said. Good night.

Thursday, February 24

I slept very well, woke to a dream of beautiful music being sung by three fabulous sopranos. Shared coffee with my very special friend, Lisa (during my zombie hours). Lamented the pointless tragedy of Ukraine with Roman and others of his community. We walked alleys near Piazza Scalza, hilly and twisted; not easy but psychologically healthy. I napped for ninety minutes like I needed it. Walked the sagrato with increasing confidence. Talked with Emiliano who was re-opening his Osteria del Duomo. We stopped for gelato on the way home, saw Sara for the first time in well over a year. Once home, I obsessed with the news. 

Friday, February 25

We walked Piazza Gonzaga to San Giovenale during the 11:00 to 13:00 blank period, and while it was pleasant enough, walking itself was a hundred percent deliberate. Then, while still blanking, I was given a shower and ate lunch. As Roman left, I took up residence in the recliner and slept deliciously for two and a half hours!

If you had asked me at five this afternoon how I would be walking this evening, I would have predicted awkward, noisy, and deliberate. So it was a great surprise when it was spontaneous, smooth, and silent – and accompanied by birdsong. There were also waves to all the people who live or work in the piazza and have become friendly. It called for gelato on the way home.

Saturday, February 26

Slept like a stone again, although my right shoulder was particularly painful for some of the night. Was hazy all morning through prep and walk and after. But walking was smooth, silent, and generally spontaneous. Napped a total of two hours in separate shifts, and woke feeling alert and focused. I spent a little moderately useful time on the novel. The evening walk was better than usual, and agility is for the most part spontaneous and quick.

Sunday, February 27

Another great sleep, more comfortable than I’ve been in a long time. I woke feeling like icebergs of symptoms had fallen away. After actually rising I understood that was a tad optimistic, but some of my early walking included a bounce, equilibrium is much improved, my sense of smell is occasionally active, and agility is (for the most part) astonishingly quick. Also, I can go hours without peeing (and it is seldom urgent anymore), ankles rarely hurt, left knee is also hugely better, the stabbing pains in my feet are rare, and restless leg syndrome has calmed way down. I can still sleep any time and anywhere, but that’s probably because my nervous system is working hard to heal and needs the rest. No complaints, here.

Well, maybe one or two. At around seven this evening, I became suddenly droopy tired, apparently a replacement for the morning droop of the past few days. That lasted until about nine, then followed a wilting pain in the right shoulder and forearm.

Monday, February 28

I slept two hours, then two awake, then five more in blissful sleep. So, okay, that’s an odd step backwards but not bad. Pins and needles, always in hands but sometimes elsewhere, have been constant. They are a recovery symptom, but that doesn’t make them comfortable. Otherwise dexterity, speed, and ease of movement is good – not yet with walking and definitely not changing direction on my feet, but both are better than usual. Typing leans towards awesome (viewed in context), or at least it was until evening when it took a dive.

Tuesday, February 15

Oh, did I sleep so sweetly, all spread out and splayed, arms and legs akimbo, discovering places I could put my body I’ve not explored in two years or more. And I dreamt of friends long-lost and it was such joy to see them again.

Walking leaned towards deliberate, everything else (except for typing) leaned towards spontaneous.

In the evening we went to Blue Bar. Only Antonny the proprietor and our friend and barber, Alessandro, were there, so we settled in for a wide-ranging conversation about movies. Haven’t had such good fun in awhile.

Wednesday, February 16

Everything leans spontaneous today. Alexander lesson was so subtle I found it difficult, but I felt more balanced afterwards, so good. I want to work on the book but typing lags a little behind the rest of my movement. But I am also experiencing a kind of writers’ block; afraid to go forward for fear of painting myself into another corner. In the meantime, my spirits are high, my heart is light, and my body has shucked off a layer or three of oppression. It’s hard to describe, but I feel as if I’d been wrapped in plastic film and suddenly it’s been cut away – or most of it. I’ve not felt this free and joyful in (maybe) decades. And my Italian is smooth and confident despite a constant stream of errors.

Thursday, February 17

Walking fit into the deliberately spontaneous slot, today. The best example of what movement was like rests with the putting in of my hearing aids. Until two or three days ago, just getting them tucked behind my ear was an acrobatic feat; I dreaded doing it. Then that started to change, and today it was as easy as two years ago. 

I continue happy and relaxed socially, more so than I have been since I was a kid. I slept a lot today, but easily, without RLS, and without grogginess in between. My voice has been clear for several days, and my arms loose. Typing is better than average.

Friday, February 18

Typing continues to improve, if I don’t watch out I’ll lose my best excuse for not working on the novel. Lots of small actions continue to improve, things I notice during the day that are too difficult or embarrassing to describe in this journal. Walking is improved, too, but still awkward, and that sets up a tension between my body’s craving the exercise and my legs not being up to it. Arms are loose. And I am happy, speaking well and freely, reveling in company as it presents itself, glad to be alone when it doesn’t. 

The evening walk was a strange hybrid of elegant spontaneity (relatively speaking) and trodding deliberateness. I am, however, getting in and out of chairs with such (relative) ease that I do so unnecessarily for the fun of it. 

I had a chance to pet the adorable little black dog at the tobacco store in Via del Duomo. Made my day.

Saturday, February 19

Today feels mixed. Walking was definitely in the deliberate side of things. Dexterity leans largely spontaneous. Hands are covered with pins and needles. Getting in and out of chairs is much better than it was two or three weeks ago, but harder than it was mid-week – or yesterday. Typing is better than it has been in awhile, but still wouldn’t win any stenographic awards. I want to walk briskly up a hill but know it is not possible. I want to work on the novel but am weighed down by lassitude and self-doubt, maybe a soupcon of brain fog. 

The actual walking this evening was unremarkable, but the town had gone from empty last night to an explosion of energy tonight as families took to the streets to celebrate Carnevale ten days early. My favorite costume was a dinosaur in a stroller, sound asleep. The celebrations begin a week or two after New Year, the confetti thickening as the actual day grows closer. It’s Italy, where Carnevale is at least as long as Lent – as it should be.

Sunday, February 20

This morning Natasha wheeled me to Piazza Gonzaga and we walked to San Giovenale and back. Deliberately. Slowly. But without undue strain. This puts walking almost to where it was before I fell, except that today I didn’t shuffle and posture was pretty good. 

Then we wheeled to Torre del Moro, listened to a couple of street musicians, admired the ways people were dressed, interacted with little children. I watched a toddler’s fascination with the music; his wobbly approach and unplanned sit that drew a protective jerk from his mother until she saw that he was not bothered by his sudden change of elevation.

I thought about the novel without advancing it in any way.

What works in the morning, works at night – repeat the walk.

Monday, February 21

This from an earlier email by Janice (The Parkinson’s Recovery Project) describes the first part of the day perfectly:

“you are recovering. isn’t it glorious? and yes, it can be slow, and seemingly unpredictable, and frustrating at times. but it’s actually very predictable, if only you could see what is going on in your brain. anyone who has raised a child will be able to compare this to the baby who magically does a new motor skill one day, and does it beautifully. the next day he does it very poorly. and then he doesn’t even try for a week or two or three. and after that, he owns it and never loses it. and in the meantimes, he sleeps more than usual and is cranky and emotional.”

And so followed the evening.

Tuesday, February 8

I slept in bed with no problems turning over or adjusting position for about six hours without interruption; Roman arrived, I peed, and slept another hour and a half. Movement is more fluid today, and our three rounds on the sagrato, while not up to the ease felt on Saturday, were distinguished by lack of shuffling and good posture, both automatic and without deliberate mental effort. The evening stroll was a little better than the morning, but in the same general category, and six rounds. Words are difficult to put together and typing is halting, but neither is extreme. The right arm is very relaxed.

Wednesday, February 9

Both morning and evening walks were on a par with yesterday evening or better. I slept for 7 hours last night without rising for any reason! I can get into and out of chairs without strain. Typing ain’t great but has been worse. Had a wonderful session in Alexander Technique. Life is good.

Thursday, February 10

Walking is still good, but without spontaneity and bounce. Those were on the way out yesterday evening, so no surprise. I slept well again last night and took only one relatively short nap today, so sleep patterns feel fairly normal. Eating lunch was logistically challenging what with a right arm tremor and general lack of dexterity, but eating an afternoon snack and supper was normal. I am emotionally trigger happy about anything and nothing. Typing is not bad but pretty irregular. Life is still good.

Friday, February 11

I lack the word. There were two or three days this past week when the prevailing state of movement was spontaneous and relatively strong and fluid. I don’t mind calling those good days, they are and I enjoy them. But last Saturday’s good day was followed by Sunday’s day of my body’s regrouping and learning, and brain recalibration. Good stuff is happening on those days so I don’t want to call them bad. How about movement spontaneous and movement deliberate? That’ll work for now.

Well, then after several movement spontaneous days this past week, I’m having a movement deliberate day. But compared to last Sunday, today is spontaneous. True, getting out of a chair is harder than it has been so far this week, but I still can and with minimal struggle. Walking today lacks spontaneity so it takes conscious attention to maintain good posture and stride, but I’m not hunched and shuffling. So, if this is as far as my brain needs to go towards deliberate this cycle, things are looking good! 

On the theme of looking for words, I happened upon this from the text of Recovering from Parkinson’s and it filled another gap I’ve been feeling about my reporting.

“Doctors see Parkinson’s as a problem of motor function and a problem of tremor, only. Because of this, doctors and patients alike usually only look for a return to motor perfection or cessation of tremor when they look for evidence of recovery. But normal motor function and cessation of tremor might be the last changes to be realized.

“Recovery from Parkinson’s is tentatively happening when your mind even fleetingly starts to enjoy parasympathetic mode again: you start to laugh more and don’t care so much about what others think. Recovery from Parkinson’s is happening when you start to realize it doesn’t matter or not if you are vulnerable, or not as perfect as possible, and that it’s just fine if someone makes fun of you. These are the earliest changes that show a person is recovering from Parkinson’s disease. The invisible changes, not the improvements in motor function, are the ones that prove you have turned off pause and are in the process of healing.”

Saturday, February 12

Rose early so to get to a dental appointment, and consequently had an early breakfast. We went to the Duomo for a walk after the dentist. I started with tremendous energy and wore out at a half lap. Too hungry. Otherwise, movement is rather fluid, dexterity good, and speed of movement is increased. Typing is very good. 

I feel emotionally a bit down, perhaps brought on by the prospect of a pointless war advanced by yet another psychopath who is eager to wage a battle based on 70 year old geography, and who makes the Guelphs and Ghibellines look rational by comparison. My Ukrainian friends refer to him as the “mad dog” which is unkind to dogs.

Sunday, February 13

Movement is deliberate today. Again, both walks began with bursts of energy that quickly depleted. Neither were spontaneous, and both left me tired. But I feel happy and clear, getting in and out of chairs is relatively graceful, and typing is tolerable; so tolerable that I started in again on my book. Only a few pages, but at least it crawled forward.

I look forward to another day of spontaneous movement, but am trying to be careful not to expect one.

Monday, February 14

I slept seven hours straight, getting up not at all, for nothing! (Does it show that I am happy about that?) Then we walked the garage, briefly, and I napped for 90 minutes afterwards. Walking leans toward deliberate, but all other motor functions are leaning towards spontaneous. I especially enjoy that gestures and reachings are quick and agile, that my arms are relaxed, and that I can get into and out of chairs without undue effort. Also, balance is improved.

The evening walk was pure spontaneity.