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English – June

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Dear XXX

In 2019, the play Colloquia (how music saved Orvieto) by David Zarko, was presented in both English and Italian at Teatro del Carmine to honor the 75th anniversary of Orvieto’s being declared an Open City during the final months of World War II. The international community sponsored the play as a gift to the city we love; it attracted capacity crowds for all six performances.

This June, we celebrate the 80th anniversary of Orvieto Città Aperta, and are organizing a slate of events in its honor, culminating in early July with a revival of Colloquia, and beginning in May with a reading and discussion of the Italian language version of the play with local students. 

On 16 June, starting at 15:00 the a cappella vocal quintet, Cherries on a Swing Set, will perform their own arrangements of popular songs of the 1940’s at Villa Clara in Porano. Motor coaches will depart from the top level of Campo della Fiera and return after a post-performance aperitivo. This event is hosted by Peter and Lora Gibbs and required reservations can be made beginning 1 June. Seating will be free and very limited – however, those making a donation of at least 80 euros (or dollars, below) during the month of May will be guaranteed a seat for each donation made. 

Later in June, Opera del Duomo will hold a series of free concerts on its organ of nearly five thousand pipes. And for the last week of June, we are working on a exhibit of student-generated visual art inspired by the theme, Orvieto, città aperta.

I urge you to contribute in any amount to help celebrate this historic anniversary. To support these events with euros or dollars, go to Classic Radio Road Show. Thank you! And watch for more details to come!

[INSERT YOUR NAME(S)]

The English language production is a project of Classic Radio Road Show, a not-for-profit arts organization registered in New Jersey, USA. 

The Italian language production of Colloquia is a project of Kamina Teatro, a registered not-for-profit arts organization in Italy.

English – Not June

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Dear XXX

In 2019 the play Colloquia (how music saved Orvieto) by David Zarko, was presented in both English and Italian at Teatro del Carmine to honor the 75th anniversary of Orvieto’s being declared an Open City during the final months of World War II. The international community sponsored the play as a gift to the city we love. The play attracted capacity crowds for all six performances.

This June we celebrate the 80th anniversary of Orvieto Città Aperta, and are organizing a slate of events in its honor, culminating with a revival of Colloquia. Watch for more info in late April.

In the meantime, we have begun to raise fund and hope you will consider making a contribution. Any amount is welcome. 

Our goal is to match the €4.000 granted by Opera del Duomo for the production in Italian, and $4,000 towards the $8,500 budget for the English language performances.

To support Colloquia in dollars, please click here.

To support Colloquia in euro, please click here – and thank you in advance!

[INSERT YOUR NAME(S)]

The English language production is a project of Classic Radio Road Show, a not-for-profit arts organization registered in New Jersey, USA. 

The Italian language production of Colloquia is a project of Kamina Teatro, a registered not-for-profit arts organization in Italy.

Italiani

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Caro XXX

Nel 2019 lo spettacolo Colloquia (come la musica salvò Orvieto) di David Zarko, è stato presentato sia in inglese che in italiano al Teatro del Carmine per onorare il 75° anniversario della dichiarazione di Orvieto Città Aperta durante gli ultimi mesi della Seconda Guerra Mondiale. La comunità internazionale ha sponsorizzato lo spettacolo come un dono alla città che amiamo. Lo spettacolo ha attirato un pubblico numeroso per tutte e sei le rappresentazioni.

Questo giugno celebriamo l’80° anniversario di Orvieto Città Aperta e stiamo organizzando una serie di eventi in suo onore, che culmineranno con la rinascita di Colloquia. Guarda per maggiori informazioni a fine aprile.

Nel frattempo, abbiamo iniziato a raccogliere fondi e speriamo che prenderete in considerazione la possibilità di dare un contributo. Qualsiasi importo è il benvenuto. Quando donerai almeno € 80 (o $ 80) a persona, riceverai un invito prioritario per un concerto unico di musica popolare degli anni ’40 eseguito da Cherries on a Swing Set. Il concerto si terrà il 16 giugno sulla terrazza panoramica di Villa Clara vicino a Porano. I pullman partiranno dal piano superiore del Campo della Fiera alle 16:00 e alle 16:30 per il concerto di un’ora alle 17:00. Alla musica segue l’aperitivo. L’evento è ospitato da Peter e Lora Gibbs.

Il nostro obiettivo è quello di eguagliare i 4.000 euro concessi dall’Opera del Duomo per la produzione in italiano, e i 4.000 dollari rispetto al budget di 8.500 dollari per le rappresentazioni in lingua inglese.

Per sostenere Colloquia in dollari, clicca qui.

Per sostenere Colloquia in euro, clicca qui – e grazie in anticipo!

[INSERISCI IL TUO NOME(I)]

La produzione in lingua inglese è un progetto di Classic Radio Road Show, un’organizzazione artistica senza scopo di lucro registrata nel New Jersey, USA.

La produzione in lingua italiana di Colloquia è un progetto di Kamina Teatro, un’organizzazione artistica no-profit registrata in Italia.

Recovery & Repair

Tuesday, July 11

Cynthia spent three or more hours daily working mostly with yin tui na and qigong techniques. The week following, that of July 3, was filled with improvements, both subtle and obvious. All of these lightenings of symptoms have happened before for a day or two, but here is a list of changes that held for five days or more.

Movement: It is easier to initiate movement, most notably with my feet. That also means no freezing in place and not halting before I change direction. Although the ease has diminished since Sunday, this is still the case after more than a week.

Restless Leg Syndrome: Incidents of RLS are both less frequent and less severe. This also survived the week.

Walking: Until Saturday there were periods of “strong” walking that felt more grounded and fluid. On occasion my arms relaxed and swung a little. This is gone, for the present.

Drool: There has been a persistent reduction of saliva, especially at night. Continues thus.

Sleep and Comfort in Bed: There is a major improvement in quality and duration of sleep, plus greater ease in finding comfortable positions, and in turning over and making physical adjustments. Turning over became difficult again on Monday night, though less so than what was previously normal.

Internal Factors: I am more forgiving of myself, kinder in my thoughts, and gentler in recalling memories, and I am grateful for joy when it appears.

I dearly wish I could live within walking distance of Cynthia for a few weeks, or find someone as generous, kind, and informed as she to continue treatment. When I can type more easily I intend to write more about what we encountered during our afternoon sessions, and of ways I am trying to continue with those practices on my own.

[the following quote is from Recovering from Parkinson’s by Janice Hadlock]

“Only if you understand what it is you are truly trying to change will you be able to rest easy in the knowledge that you are, in fact, healing from Parkinson’s disease after pause turns off. Your doctors and loved ones might assume you still have Parkinson’s disease until their snappy and highly inadequate visual assessment shows that you no longer have any residual trace of impaired motor function.

Doubt can cause people to re-invoke self-induced pause. Don’t.

You know the changes and healing you are going through even if no one else perceives them or acknowledges them. Savor them.”

Repair – March I

Tuesday, February 28

Last night during the awake between first and second sleep, my Friend offered to energize my pericardium. I said “sure”. He said, “But let me do it, nothing for you to do except observe and enjoy.” There immediately began an energy bath that started in the region of the heart and spread to parts of my upper body. It was glorious and lasted for about two minutes. When it was done, I wanted more, so tried mightily to repeat the experience. “Let me do it!” he said. I tried to let him, but nothing. It was only just now I realized that allowing needs to be completely receptive, and that even issuing an invitation is doing something. (Friend also warned me at the time that there would be a rebound, but not being sure what that meant, I didn’t write this until the week had proven his point.)

This evening’s walk featured seven garage laps of feet picked up and heel to toe steps. People have been telling me to walk that way for years and I simply could not sustain it. This evening, I could.

Wednesday, March 1

Shiatsu yesterday, so everything is a notch askew. The tremors shut off occasionally, but I don’t know why. Walking today was not bad, but I had to struggle to achieve last evening’s form for even half a lap, never mind sustaining it for several. But I was able to advance on my tax numbers, so that’s something!

Thursday, March 2

Today it became clear that for all of my adult life, if not longer, I have metaphorically had one foot on the brake and the other on the throttle, simultaneously. The PD is the result of having to work so hard to get nowhere, and finally letting go.

A twenty minute nap after lunch destroyed my energy, focus, and typing for the afternoon and evening.

Friday, March 3

Except for a few periods of spontaneous energized pericardium, it was a perfectly mediocre day. But the pericardium energized is such a glorious experience, I want to live there always. I submitted an application and am hoping to be given keys before long! Friend says to chill, and take it as it comes.

Saturday, March 4

It was a very choppy night. After repeated, and oddly benign dreams about Kristallnacht, I woke at 06:00, tired and uncomfortable, and spent a half hour throwing myself at the pillows hoping that I would find an agreeable position that would invite, or at least allow, the sleep I craved. I finally gave up and moved to the recliner where I fell instantly asleep. Around 07:00 I was awakened by creeping RLS, and still tired, threw myself onto the bed, was immediately comfortable, and was asleep in seconds. That is all so weird.

But I never did get the sleep I lacked (and I was limp as well), so despite the sun and well-wishers, I could barely walk when Iryna took me to the sagrato. After lunch I feel asleep in the recliner for two hours without a whisper of RLS, but each time I even approached waking, my body stiffened into an imitation of a wood plank, and shook violently for about a minute. Once awake, it was an hour before I felt I could risk trying my feet. 

By the way, this morning there was no tremor. At all.

Sunday, March 5

Slept well enough that I was disappointed when Natalia woke me. Walked the streets around Grand Albergo Reale for the first time in weeks. It was a bit of a challenge. After lunch I spent two hours at the computer drafting and sending a letter to sixty people. It was also a bit of a challenge. Worn out, I sat down at 16:45 to wait for Iryna’s arrival at 17:00, figuring that if I dozed she would wake me. She ran late, I did fall asleep, so by the time she woke me I’d slept 35 minutes, hence the evening walk was much more than a bit of a challenge.

Monday, March 6

Another choppy, uneven night; slept well when I slept, but in between I wrestled to find acceptable positions. Between 04:00 and 07:00 I slept for an hour, paced the hall endlessly, stretched my back, and tried to get comfortably onto the bed maybe twenty times, then suddenly after a string of aborted attempts, it fell right and I was soon asleep. So weird. The rest of the day logically followed. I succumbed to a thirty minute nap around 14:30 and spent two hours trying to recover. The evening walk was awkward and shuffling, unlike the form during early morning hall pacing which was pretty damn good.

I’ve been begging Friend for more pericardial energy, and it does happen in life, only subtler. He says not to waste time and energy on being discouraged.

History, February 20, 2023

It was two years ago on the 25th of January that I began weaning myself off the anti-Parkinson’s drugs that I had been taking for about nine weeks at a low dose of 300 mg a day. Thus began the most interesting, challenging, and transformative journey of my life. In honor of that beginning, I’m dedicating this post to how I got there.

One of the classic first signs of PD is a sudden loss of the sense of smell. That happened to me in early 1997, though at the time I attributed it to over use of nasal decongestant sprays. The next symptoms manifested as a gradual deterioration of posture. That was apparent by the time I moved to Orvieto in the fall of 2015, but as an occasional difficulty that came and went. A year later, I noticed that my left foot dragged a bit, especially while walking uphill. In April 2017 I noticed an invisible tremor in my right arm, and a tendency for that hand to turn into a claw. A year or so later, I began to experience difficulty typing, and gradually from there, constraints in indoor movement (movement outdoors remained fluent). I chalked it all up to old age.

In the fall of 2018 my physiotherapist told me that in her opinion I had early-stage Parkinson’s. That made sense to me – my father was diagnosed with PD in his early 70’s – but I tried to deny it. Nevertheless, when I experienced what could have been heart problems, I told all the doctors I saw that I was suffering from early PD. They did standard tests and told me not to worry. That happened at least six times, the final time with a neurologist. I switched family doctors and told my new one about this, and he, too, found no solid indication of PD, but ordered an MRI to be safe. Then a week later he saw me trudging up a hill and changed the order to a DATscan, the closest thing to a test for PD (nothing will detect PD conclusively). Suddenly, I began to experience stronger, more debilitating symptoms, and they continued that way for the two months between order and diagnosis.

The test results were sent at the end of May. New symptoms immediately followed. I increased my walking from five to at least seven kilometers a day. In mid-July my doctor started me on a very low dose of Madopar (Sinemet in US). After two weeks of feeling drunk, I begged off it. Symptoms improved. I was referred to a neurologist in Rome whose only offer was a higher dose of the same. I looked into a natural version of levodopa called mucuna, but could not find guidance on dosing.

I tried a naturopath, results inconclusive. In September, I heard about fecal microbiota transplants as an experimental treatment, and made arrangements to go to Bratislava for two weeks. Walking increased in distance and speed. The treatments seemed to help. But in late February, the left leg started to drag again, worse than before. I consulted Bratislava, but when lockdown happened in both countries, communication stopped. I kept walking as much as I could. Symptoms came and went. When restrictions were lifted mid-May, I was back to hiking the next day. It felt great, but as May continued, walks became less predictable. I felt very symptomatic indoors again. Then in June I injured my achilles’ tendon, and walking became impossible. I opted for surgery and I was unable to walk much for months after that.

In early November, I was convinced to try Madopar at the 300mg daily dose. My rationale for agreeing to try it was that it would buy me a window of six months or so during which I could research other less toxic treatments.

The drug made symptoms worse for four or five weeks, then gradually better. But because of the surgery I still could not easily walk. By late-December I felt more or less at par with how I was moving in October.

Then in late January, I happened to find the website for the Parkinson’s Recovery Project. What I read on the site made sense to me, so I downloaded the (free) books and plowed through almost a thousand pages over the weekend. On the following Monday, thoroughly convinced that a medication free course was the best course of action for me, I began to reduce the dosage I was taking. There was a withdrawal period of fifteen weeks, and by June I was beginning to feel the positive effects of being off the drugs. But I miscalculated the dosage of a sleep aide my doctor had prescribed and fell, breaking two ribs. That meant another month off my feet, followed by the worse movement I’d experienced until then. I didn’t regain where things were in July (before I fell) until at least January (2022).

Recovery – August III

Tuesday, August 16

Last night I woke at 02:30 and could not sleep again until 06:00 for lack of a comfortable position. When I woke in perfect comfort at 09:00 I was in a position I would have rejected a few hours before. Defeated by my own criteria. Makes me wonder if I undermine myself in other similar ways.

The morning walk was another semi-triumph. The evening walk was, by any measure, a disaster; heavy, uncontrolled, scraping, and laborious. Roman blamed the humidity. I blamed it on a nap that left me zombie-like and slow. The lugubriousness lasted for hours.

Wednesday, August 17

I didn’t get to bed until two, but slept seven hours without a break. Walking was better than I expected, today, but my expectations were very low. Other movement felt like I had tangled with a barrel of unrolled packing tape. The weather wants to rain, but as my friend Erika puts it, instead the air chooses to feel like an over-warm swimming pool. Storms have been predicted for several days, but none have given us rain. 

As for my state, if I’m limp at all today, at least it’s not in the legs.

I’ve been singing off and on since last night. I’ve been trying to sing for more than a year, so that’s a great joy. And I can make very breathy whistle-like sounds. I stopped being able to whistle around twenty years ago. Now we shall see if the music will last.

Roman pointed out that two months ago I was walking like a troll. I now walk like an old man. That’s a welcome observation. I have no aspirations toward troll-dom.

Thursday, August 18

I slept until 03:30 then not again for three hours; same no-comfortable-position nonsense. My theory that I am undermining myself holds up, but I can’t seem to control it. I walked and chanted, tried lying down, judged it bad, and paced more. The morning walk was not bad (in spite of the lack of sleep, I didn’t feel at all tired) but after Roman massaged my legs I dozed for a half hour and woke to zombie-ness again (like on Tuesday). After a difficult lunch, I decided on a proper nap. Afterwards I could barely move. Only a half hour of pacing afforded any relief. All the movement inhibition was due to unresponsive muscles, or random response, none of it to rigidity or locking, so it can at least be attributed to recovery symptoms, but it is still agony to go through, especially given how long it may last and/or how often it returns.

Friday, August 19

For several weeks the feeling of general discomfort has been largely absent. Today, I am experiencing recovery symptom of limpness to a degree I didn’t know was possible and general discomfort has returned. So, I really cannot stand to sit, but pacing the hall takes a monumental effort. Walking out of doors was a wash; I tried but couldn’t.

(from Recovering from Parkinson’s by Janice Hadlock) 

Once you get started on the recovery symptoms, you will be glad that they move along slowly. They can sometimes be overwhelming even at their moderate pace. Recovery symptoms are unstoppable (unless of course, you revert back to using pause mode). They are not always pleasant. At some point, you will be grateful that they do not happen all at once, but merely progress as quickly as you can tolerate.

Saturday, August 20

(from Recovering from Parkinson’s by Janice Hadlock) 

“In some people who had been obviously recovering from Type I PD, the panic or worry about stalled recovery based on the list of recovery symptoms often resurrected the old Blocker and even some of the old Parkinson’s symptoms. After all, even after turning off pause for good, a person can always choose to re-activate it, especially if he hasn’t yet resumed using sympathetic mode – the correct mode for dealing with fear or rage.”

For the past week or so, manual dexterity has been largely bad, production of saliva worthy of Pavlov’s dogs, and an annoying tremor has shown up in my lips and tongue. Last night was a restless night. Between three and six I got in and out of bed numerous times, and paced the hall to the border of exhaustion. While I was pacing I noticed that when the feeling of heaviness waned, so did the mouth tremor and excess saliva. It wasn’t even subtle. It was like a toggle switch. That awareness has continued into my day.

Sunday, August 21

I slept well until 05:00, then was awake until 06:30. During that awake time I noticed that the mouth tremor would switch on an off; on when I allowed the thought that the limpness I was experiencing was PD-related, off when I viewed it as a recovery symptom. I spent that time doing arm swinging exercises as Friend cautioned against walking too much. Then I slept well (really well) until 09:15. When Irina finally roused me, I found myself in a very pleasant state of not wanting to move. At all. I thought I had experienced limpness already, but this was another order of magnitude. Irina managed to pour me out of bed for breakfast and our morning routine, but it was obvious that any attempt at a walk was a waste of time, so she gave me a massage instead. I didn’t object. 

When she left for work at 11:45, I was in the recliner prepping for a short nap. One that lasted two hours! 

Now there is a phenomenon that used to happen regularly, but has only occurred once since about April – I call it the plank. It would always happen just after I woke from having napped on my back in the recliner; my feet would rigidly point, arms straighten like wood poles, and muscles stretch into a… well, a plank. That would hold for ten or fifteen seconds then release, often leaving me with increased poverty of movement for a few minutes. Today the plank woke me, released, let me sleep, then woke me again. It did that three times. 

When I finally sat up, I realized that there was no point in trying to stand so decided to watch a bit of news. From the earphone’s place on the table to my ears took at least two minutes. I regained some motion after about a half hour, and was able to claim the very Ukrainian lunch Irina had left me. The on/off switch on the mouth tremor kept up it’s warning system throughout, though with less precision than last night.

After having written this much (with pretty good typing skills) I slept for another hour. No plank, but rather severe poverty of movement afterwards. I sat and imagined specific movements for about twenty minutes, as I did last night between arm swinging.

This evening we took a wheelchair stroll (my legs being jelly) and Anna made an Italian friend named Giulia. The only language they had in common was Play, and that sufficed. I sat and watched until my body folded in on itself like an over used paper sack, but after supper things loosened up. In fact, the legs gained significant coordination. Stand by for more (crossed fingers).

(from Recovering from Parkinson’s by Janice Hadlock) 

“I will just say that the path of recovery is somewhat predictable. But recovery symptoms do not necessarily follow a straight line. Also, the recovery symptoms are sometimes subtle, sometimes blatant. The intensity of recovery symptoms varies from person to person and, in any one person, might vary from day to day.”

Monday, August 22

Well, I paid for yesterday’s much-needed naps last night when, having had two hours sleep, I never slept beyond fifteen minutes at a time. So, I spent much time imagining movement, which was immediately followed by testing the images with actual effort. It worked amazingly well. While today’s quote overstates my particular case, I do think I’ve had a habit of pushing the walking in a very pause-like manner until my system collapses from exhaustion and resets my walk to zero. It feels different this time. Limpness is still present but less profound today, and what walking around the apartment I have done feels lighter, freer, and less over-controlled. I can also turn and change direction without freezing up from confusion or wariness.

(from Recovering from Parkinson’s by Janice Hadlock) 

“I eventually came to see that those patients who could feel and imagine movement in their legs rapidly overcame this phase: mushy legs started to firm up in a few days or a few weeks. Those who were in partial recovery, who were still using self-induced pause and were therefore unable to imagine their legs moving sometimes found themselves stuck in this phase indefinitely – until they decided they could not recover, after which, they fearfully increased the use of pause mode, stiffened back up, and could use their legs again in a PD-like manner.”

I had to nap today, there was no avoiding it, but all the sleep took place before 14:00, so I am hoping that by midnight I will be sleepy enough to overcome an over-exacting attitude towards choosing a sustainable position. It is a kind of self-defeating judgement, this search for a perfectly balanced place for all my limbs, but I cannot turn it off.

Recovery – July III

Tuesday, July 12

Last night, just as I was getting ready for bed, my email stopped working. The provider was switching platforms, but I had changed the settings in preparation, so this should not have happened. I briefly tried to fix it, got very angry (in a ready to swear a lot way, not a throwing things way), and went to bed. But the a/c had quit working earlier (only a loose plug which Roman immediately found) and the temperature was higher than I could tolerate in bed, so I got up to pace. Movement was confident and fluid, my posture almost normal, and walking was in relatively good form. I was still angry and there seemed to be a connection, like maybe a flood of adrenaline had given my brain something it needed. The flow lasted for about an hour, during which time I fixed the email problem (just as Friend said I would after I relaxed a bit), then movement crept back to its more accustomed level. But the adrenaline rush, if that’s what it was, had me wired so I didn’t really sleep until nearly six.

This has happened before, that is anger has improved movement. It’s a pleasant effect, but not one I want to get used to, not if I have to cultivate rage in order to stay there.

Today, I feel internally well, and movement is a mix between awkward and comfortable. And I’m kind of dopey for having gotten only three hours sleep.

Wednesday, July 13

I slept better last night but still not enough. We had to hit the road early to get to an appointment at the questura (police station) towards renewing my permisso di soggiorno (permit of stay). I was dopey to begin with, and thank goodness for Roman. There were two officials at the counter. The one helping me spoke very quickly, the one helping others has a giant, booming voice. Between the two, my hearing aids were rendered useless. Then came the finger printing on an electronic pad. Maybe because of all the hand washing and sanitizing since the onset of the pandemic, none of my prints would read until we got to the left thumb, which was almost last in line. I was an exhausted symptomatic mess all the way home. I napped before lunch, felt a tiny bit better, then a music nap after lunch and I felt much better.

The sagrato walk was accompanied by a brass band, flags of at least 40 countries, and 900 skeet shooters from around the globe. I managed to put in five laps anyhow, as the band played marches. The actual shooting will happen in the country near Canale, not in Piazza del Duomo. The gathering will be here through Sunday. If you were planning to come to Orvieto for dinner this week, forget about it.

Otherwise, this was a two-steps-back kind of day.

Thursday, July 14

Slept well for three hours then not really again until my after lunch nap. There was a family of six very energetic, blond, and adorable little children running crisscross to my walking trajectory, and coupled with my lack of sleep, that effectively destroyed the morning stroll. The evening was a lot better. The other things that were improved on the weekend, waned, and are now coming back. Internally, I felt clear and calm for most of the day.

There is a tango floor installed in the piazza. I’ve promised a friend the first dance, but am going to have to put it off until next year.

Friday, July 15

Feet of lead, but typing has been good all day. Slept well last night. Wanting to wave my arms like a lunatic and dance like a child. To open my heart like a great cellist, and sway while I walk. Take nothing for granted.

Saturday, July 16

Even though Roman has organized my showers to be as comfortable as possible, and even though I love being clean once a week, I cannot say that I look forward to them with glee. But today as he washed my hair, it felt so good that I said so, and was rewarded by perhaps thirty to forty seconds of feeling absolutely safe. Feeling safe is vital to turning off pause and to not randomly turning it on again. And this was not a mental construct kind of safe, it was like there being a strong, vertical support running through my energy centers; supremely pleasurable, and almost beyond time.

Otherwise, walking was on the mend, and typing has been actually pretty good all day. There seems to be a weekly cycle to how well I move. Something to do with how my brain is learning about the needed levels of dopamine, perhaps?

Six hundred tango dancers descended upon Orvieto this weekend, according to the headlines. They participated in a global competition held in Piazza del Duomo, according to a friend. And in typical Italian fashion, a half dozen bars decided it was a good week to go on vacation.

Walking (and even pacing) was on the good side of form, all day long.

Sunday, July 17

Eighty-seven years today, my parents tied the knot in a ceremony attended only by a priest and two witnesses. With minimal fanfare they kept it going until my father’s death fifty-three years later. They were very different people, but loved, supported, and trusted one another, and never let their differences become exaggerated.

This morning I did a half kilometer on the north sagrato, unassisted and in relatively good form. I was exhausted afterwards. Twenty-six months ago I could do ten kilometers up and down hills without feeling the least bit tired. To say I’m out of shape is a vast understatement. But the PD seems (seems) to be letting go of my body ever so gradually, so getting back into fit is a top priority.

As the day progressed, I became increasingly tired, though there was an hour or so of quick and free upper body movement. But by the time we went out, walking felt impossible. The actual walk was pretty good, not as good as this morning, but not disgraceful. Typing is awkward, but has been a lot worse.

Monday, July 18

I got up this morning just before Roman arrived (after seven straight hours of sleep) which meant we could beat the heat when we went out. It’s extremely hot from noon to about six, which because I’m home and air conditioned during those hours, means I’m not personally affected, but I worry for others my age and beyond – and for the parched countryside. The walk this morning was pretty good, not stellar but decent. Then I went to breakfast with American friends, and collapsed when I got home. But after lunch I was energetic and wanted to pace a lot, so I did.

I’m not sure about the week’s cycle I hypothesized on Thursday; it may be more like every three or four days. Or maybe it’s random. Or in response to internal realities that are difficult to track.

Around four I ran out of steam, and crashed on the recliner. Something happened – a profound relaxation – during that nap, but that’s all I remember and as far as I can tell, there was no carryover. Wake and shake is back, I’m sorry to report. Typing this evening is quite awkward, so this is the last sentence for today. 

Recovery – May II

Tuesday, May 10

I slept well, but walking the circuit around Torre del Moro was a struggle. Nevertheless, we did two turns, and half of that was unassisted. The weather is perfect and I have wanted to walk normally all afternoon. There is not even the hint of an urge to nap.

The evening stroll was no better or worse, but at least I held my own. We stopped at Blue Bar afterwards. The cough decided to return just as there were lots of lovely people to talk to, which was disappointing.

The focaccia, half of which I ate at Blue Bar with only a hint of a drippy nose, was finished at home followed by a bucket of snot, sneezes, and exaggerated coughing. I coughed through a conversation on the phone with Gina, who I adore, my body squirming with discomfort. It wasn’t a bad day, but I’m hoping for a simpler tomorrow.

Wednesday, May 11

We walked nearly a kilometer around Torre del Moro, and half of that was unassisted. Then I lunched with my friend Cheryl at Enoteca al Duomo. By the time I got home at 14:00, I was destroyed. I slept until my Alexander lesson at 15:30 when I presented Monika with a pretzel of a tired body which she set about trying to relax and, to a large degree, succeeded. Then we did another half kilometer at the Duomo, and had a dozen street-met conversations on the way home (plus a delicious salted caramel gelato). It was a fine day interspersed with periods of abject desperation.

Thursday, May 12

Walking was difficult and noisy at the Duomo this morning, though I managed to shuffle half of it without holding onto Roman. Lunch was difficult to deliver to my mouth (no tremor, just slow coordination) and then I slept 90 minutes in the recliner; but without restless leg syndrome, and only the slightest moment of stiffness and trembling when I finally woke. 

Then after an afternoon of benign discouragement, Natalia took me to Torre del Moro where I did three completely unassisted turns around the “block”. That was more than I’ve been capable of in a year and a half, and the most in two years without medication.

One of the greatest challenges is to accept that all improvements are not going to arrive all together and all at once, nor will they necessarily stick around for very long before taking a vacation. Cherish the little things, like being able to put my pants on all the way, and without trembling; a change that also seems to be lasting.

Friday, May 13

We did two circles around La Torre this morning, unassisted. There were lots of people out, so I returned home content but tired.

I slept some.

The evening walk was on the sagrato, not easy but unassisted. Then we wheeled around, meeting people, while my spinach pizza rustica was being prepared. I returned home utterly spent and uncomfortable, and so I remained all evening.

Saturday, May 14

Sleep was made difficult by a deep discomfort and an internal heat. Indoor temperature was a pleasant 21 degrees, but after an initial sleep of 90 minutes, every attempt even at lying in bed was met with a feeling of suffocating warmth.

That was accompanied by a strong poverty of movement, and walking was not only stiff and slow but felt theoretically impossible (typing, however, was mostly fluid).

I slept around four until Roman woke me at nine. We walked the sagrato, frequently dodging tourists, but I managed to complete five laps and 90% of that was unassisted. I lay in the recliner after lunch to meditate and listen to “heart” music. When I came to, about twenty minutes later, I was in a puddle of white light, which couldn’t be a bad thing. 

The rest of the afternoon I wanted nothing so much as to take a walk on my own. Oh, well. At least a strong desire is next best to imagining, and imagining a thing can train the brain to make it real.

By three-thirty I could not sit still, so I paced the hall for thirty minutes, paying special attention to keeping my strides as long and stable as possible. 

This evening, an unassisted walk from Gonzaga to Giovenale and back. The first few steps were good; right arm loose and swinging, stride strong and stable. Then I stopped feeling safe and the arm twisted into a gnarled root. It was welcome relief to be out and moving, but I returned home feeling shaky, tight, and empty. A very short rest didn’t help. Some time and a smoothie, did.

Sunday, May 15

I woke after a sound sleep feeling loose and relaxed. We hit the streets early, before the crowds and heat, and I walked three times around La Torre, completely without assistance, stopping to hold onto a poll now and then to straighten my posture. After those three laps, we walked to Bar Brozzi for morning refreshment (a spremuta for me, caffe for Natalia), again without assistance. While there, the crowds thickened, so walking back to La Torre was more difficult, but I made it.

Both Natalia and Roman are always reminding me to stand straight. Today, I told Natalia that the disease makes me hunched, and that there was little I could do about it. “No! It’s a habit!” she said, “The whole disease is a habit of the brain! Make new and better habits.”

Otherwise, typing and dexterity are not great. And the recovery symptom of sleeping a lot has given way to sleeping more normally. I paced the hall a lot this afternoon; sitting still was difficult.

This evening we did three circuits of Torre del Moro, then walked down Corso to Cassa di Risparmia. Every so often my gait would normalize for ten or fifteen meters. Huzzah!

Monday, May 16

I lost a couple hours sleep last night hassling with temperatures. That kept me busy until seven, and when Roman woke me at nine, I was so sleepy I could barely move. A dental appointment at eleven meant shortening the morning walk to once around La Torre, and as I was only half awake, it was hardly representative of my best form.

The right leg, by the way, is still a little sensitive to touch, but the swelling is down and remaining bruises are light – almost gone. Also by the way, my appetite which has announced itself through low energy rather than direct perception of hunger, is roaring back.

The evening walk was difficult and exhausting, and I hung onto Roman like my life depended on it.

Recovery – April V


Tuesday, April 26

From the moment I woke this morning to about seven this evening I was in a state of wonder that I don’t remember experiencing since childhood. Everything and everyone was not only beautiful but captivating, exciting, and full of promise. It began subtly and grew in power as evening approached. There was in the background a little voice complaining that I had spent sixty years or so in any other state of being when I could have been living so richly, but the voice never gained power, the reality of the present was so strong. Then suddenly I became physically tired and the wonder slipped away. But not for long, I am sure of that.

Wednesday, April 27

No wonder. The right leg is much better but it hurts and wears out after one and a half laps on the sagrato. Not a bad day, all in all, but I’ll be happy when the leg is healed. We saw Leonardo, my doctor, on the street and he took a report. He said not to worry.

Thursday, April 28

A wonder-filled morning. The right leg continues to feel better, but very slowly. Its stiffness has set my walking back in quality by at least two weeks.

Yesterday Roman introduced me to a beautiful young woman from Ukraine. Roman’s wife, Maria is helping her find work. We met her, her mother, and grandmother again this morning and Roman spent a good half hour getting them free admission to the Duomo.

Another family just arrived from Ukraine, six people in all. It is the mother’s birthday, so Roman went off at one to gather the necessities for a party at his house, which will include guiding them there by foot because they know neither the town nor the language.

There is nothing more important in life than taking care of one another. 

Friday, April 29

The right leg is stronger today, but hurts to the touch almost everywhere from ankle to thigh. Yet, walking has improved even as we are taking a cautious approach so not to trigger anything worse.

As an aside, I’ve forgotten to mention that for the past three to four weeks my left ankle has been sore (at a location not previously felt); not so much as to impede movement, but painful enough to draw attention. Yesterday that pain resolved and continues to be absent today.

As an additional aside, I’ve had a periodic cough for about two weeks. If I am laying on my back when I start coughing, the fit is followed by full body shakes for about thirty seconds. Regardless of position, the fit will often give rise to full body pins and needles; they generally last for a minute or two.

And probably the last aside for today, I’ve had a persistent pain in my right shoulder for at least a year which has been gradually going away for the past month or two. It would manifest when I lifted my arm, but never so strongly as to prevent movement.

These, according to Recovering from Parkinson’s (chapter 23) are likely old injuries that were suppressed rather than healed due to my being in Pause mode (other than the cough, perhaps). Now, off Pause as a regular mode for almost a year, they are healing in a staggered fashion.

Katrin my physiotherapist gave me a treatment for the leg this afternoon. She put me into stretches I’ve wanted for as long as I can remember, but couldn’t do myself. Time (and further sessions with Katrin) will unfold that mystery.

Saturday, April 30

Walking is subtly improved but still very difficult. 

The town is bursting with spring.

Katrin instructed Roman to put cold compresses on my right calf. It qualifies as torture to me, the muscle at the top of the thigh tenses in a way that shadows pain for hours afterwards. 

Timing and ice torture left no time for an evening walk. I was on the edge of throwing a tantrum all evening, and would have had I known how without hurting Roman’s feelings.

As if to rub salt in my own wounds, I chose this evening to scan The Playwright’s Center for submission opportunities. Were I a lesbian playwright living in Kansas with two children between the ages of 12 and 16, and wanted to submit a play of 20 to 45 minutes (with ten percent of the dialogue in a non-European language) I would have had several opportunities to choose from. As I am a boring, old, white guy with full length, untested scripts to peddle, I just got depressed.

Sunday, May 1

A similar day to yesterday but without wanting to throw a tantrum or be depressed. Everything else was a tick up on a positive scale; nothing dramatic but plenty that is encouraging.

Monday, May 2

It began when I woke at 05:30 and went into the kitchen. While not “recovered” my walk was secure and fluid. “It’s gonna be a good day,” I said to myself. My hands and arms were loose, my voice was strong, the right leg was much improved. Then little by little it all fell apart. By evening I was a coughing, spasming mess. Then thanks to a phone appointment with an intuitive therapist in Oregon, it all turned around, and by bedtime I felt much improved. I slept extremely well.