Category: Recovery

Wednesday, July 7

After a very spotty night trying to sleep in bed, I moved to the vibrating chair at dawn, and despite some interruptions for additional magnesium (to counter RLS) and for comfort adjustments, I slept a solid three hours. An early foot massage gave me an hour or so more. Darina fixed a lovely breakfast (even brought a fresh cornetto from Palace Cafe) that included coffee, and the day showed promise. But when lunch was had, the proffered new desk chair rejected, a shave and shower was accomplished, and another hour’s nap was taken, and there were still six hours to fill until sunset, and the summer ahead seemed impossibly long. That blandness would be relieved by a comfortable seat at the computer and some air conditioning. Both are on order, and a part of me is still surprised they are of such importance. Comfort didn’t used to be so sought or so difficult to find. Now finding it seems accidental. As the day wore on, comfort grew more elusive. By midnight, an accidental crossing of paths would have been most welcome.

Thursday, July 8

After very little sleep in bed, I transferred to the vibe chair shortly after four and slept well for a couple of hours. When sustaining that became impossible, I went back to bed and instantly discovered a way of sleep on my side which gave me another couple of hours. Movement to and from those various locales was as slow and tentative as can be imagined, limp had clearly won this morning, no question of confusing it with weak. Foot rub followed breakfast, then another good nap in any position I wanted to; it was liberating and refreshing. Alternating waves of feeling like I’d been hit by a bus and waves of anticipated full recovery. Sometimes together. I napped well and often all day. By sunset I was feeling more solid than slammed, but discomfort was fairly acute and fluidity level was low. It also became apparent that the overriding discomfort was limpness in legs; it was not Parkinsonian weakness. The limpness varied in intensity, but the later half of the day it was dominant.

Friday, July 9

Sleep was random and fragmented, but for the first time in a long time, without extra pillows. I was able to find comfortable positions quickly, they were simple and easy. It makes the months’ old difficulty in finding comfort in bed nothing more than a mental error, a construct based on a false premise. I wonder how many other of the symptoms will follow down that path. Still squashed in reaction, I now think, to shot #2. Many attempts at naps. My lovely sleep was cut short too early by gusts of cool air blowing on my back. By the time I’d remedied that, I was committedly awake, so spent the rest of the day searching for the perfect nap. I never found it. Meetings about badantes commenced at four and went on for three hours. The result is Roman, a very kind fellow who will become a friend. By the time Katrin left, I was dizzy. I lay down on bed for twenty minutes but was repeatedly jolted awake by what I would call RLS, except that it was not limited to the legs. Recovery dyskinesia? 

Saturday, July 10

Simple new positions for sleep notwithstanding, after a few hours, my mind made them complicated and tedious unless I took a break, in this case, a stretch in the vibe chair just before dawn. That attempt at recapturing a delicious sleep was successful only insofar as I was able to tolerate dyskinesias as elaborate as a foot lifting into a long imitation if a bird startled from its nest. That happened several times, while filler entertainment was provided by more mundane versions of twitches and spasms of the legs, though as before occasional full body or arm movements were featured. After dawn, I returned to bed for a couple of hours, and was able to find and enjoy what has come to call itself, the lawyer’s side (that is lying on the right). I rose shortly before Lucky arrived to take another chance on the black chair, fortified with an extra dose of magnesium citrate, all vibe zones off except for the neck and shoulders, and slept for two hours. Since then it’s been all about fighting boredom and discomfort, not in that order. My mood is improved by knowing that a new desk chair will arrive on Monday, and that with luck an air conditioning unit will be installed sometime next week. Also, that my new badante, Roman, comes today with his wife to fix weekend meals, and (I hope) to give his first foot massage. The next big event after that is sunset. After that, the day is pure pleasure.

Sunday, July 11

Roman’s usual line of work is as a handyman, and he attacked massaging my feet just as one would expect; like they were old wood in need of oil. Little by little I coached him for what felt good, and he adjusted, but not before he left a protective coating of mustard seed oil on my parched lower extremities that was as much a preservative as it was therapeutic. His wife, Maria checked out the fridge and put together a lovely plate for last night’s dinner, perfectly suited to the heat. Still stunned by my reaction to shot number two, I wandered from uncomfortable chair to uncomfortable chair, grateful for any and all distractions from the clock. Today began with solid sleep from about four this morning to about eight when my quota of comfort ran out. I showered and shaved, then sat in the vibrating chair and fell into a coma of a nap until minutes before Roman was due at eleven. He put the place in order and gave me a foot massage so improved it was as if he’d taken classes overnight. I’d mentioned in passing to him yesterday that I am a fan of Slav cuisine, and lunch was a fabulous potato and tarragon soup, with a plate of perozhski and sweet peppers. After years of Italian (which I also love) the change of cuisine almost made me cry. Then he went off to the lake to picnic with friends and I weighed my options between hot rooms with flawed chairs. The recovery symptom of 18 hours a day asleep may be reaserting itself, or if not 18 at least a lot more than is usual. I hope so. I prefer too much to not enough when talking about sleep. I napped in the vibe chair after a short visit from David, then resisted napping again to no avail, falling deep asleep for a few minutes at a time for more than an hour. I finally gave in and slept first on my back, then on my side, and finally in the psoas stretch for a total of about ninety minutes, and had to force myself awake to get back on my feet. 

Monday, July 12

First of all, let it be known that umbrichelli is anarchistic form of spaghetti; difficult to eat for the most skilled of us, almost impossible for those of us recovering from Parkinson’s. Green salad is close behind. Roman provided both for lunch. Delicious to be sure, but challenging. Sleep was a bit better last night with the usual quirks. Roman gave his third foot massage at nine, and as yesterday, it was exponentially better than before. I fell asleep a few minutes in. He told me later that he didn’t wake me because I was sleeping like a baby. But I was fully aware of his finishing, moving his chair, and leaving, but lacked the ability to move or speak. I’ve felt decidedly more limp ever since then, after feeling solider during the night. The heat continues to eat at my spirit. I’ve been facing blank days for almost a year now, but they are no more welcome now than they were then. Nor has my typing much improved. The new desk chair arrived, but there was no time for Roman to put it together. I do wish I felt stronger today, but on the bright side I’m beset with numerous recovery symptoms all at once. Towards evening I encountered an isolation panic. Too much heat, discomfort, and pain. Too little I can do, entertainment, and company. Bruce talked me down. I’m still frothing at the pain and increased awkwardness, but feel I’ll make it through to morning. A lovely friend characterized me as stoic. I am not stoic, or at least am not trying to be.

Tuesday, July 13

Same patterns for sleep last night, perhaps I snuck in a few minutes more than usual. The usual massage was followed by the usual coma during which Roman put together the new office chair. It is an improvement, how much of one depending on having someone here to help make adjustments. We threw open all windows around 13:00 because indoor and outdoor temperatures were equal and were served by a gentle breeze. Lunch was preceded and proceeded by naps. Walked the hall, if you can call it walking. Walking relieves soreness in feet, but a few minutes sitting is to start again almost from zero. I seem to have an anti-social time from about six to eight, frequently nap, and am unable to talk or remain pleasant. Or it may be that my recent lack of meaningful sleep is catching up with me.

Wednesday, June 30

My badante gives me foot massages a couple of times a day. They aren’t therapy, they’re just rubs using mustard seed oil. I’ve been urging her to do something closer to yin tui na, and today she finally made the commitment and just held the feet and ankles, made them feel safe. I fell asleep after a few 

When I woke I finally understood the characteristics of limp (as opposed to weak). I was blissfully unable to move, couldn’t find my legs or abdomen or back. Everything felt so safe and cocoon like. My badante oozed me to the edge of the bed, but I could barely sit, let alone stand. She had to leave shortly after that, so a line up of friends took over for her, and an hour or two later I was able to stand and make jerking steps with the walker. The bliss wore off, sleep took over, but I am left with the sensation of having experienced something significant to my recovery.

Thursday, July 1

Day two of real limpness, of being doubtlessly limp. It still feels good, but is also a bother. Every move is a huge organizational effort, every question a riddle. I’m grateful that sleep hovers so close, most of the time. It gives me something to do I can actually accomplish. 

Friday, July 2

Limpness continues. Then around noon, my badante started to melt down. Her downward spiral only worsened as she became repetitive and incoherent, until she was talking loudly to herself without a pause. I called Bruce. Claudia called my badante. Between them (and on Michael’s advice) he got her keys, we paid her, and managed to get her to leave without further incident. It was as if she had forgotten her meds the night before (entirely possible). I felt bad, I like her, but there was no way back to comfort together after that. Katrin came at five, offered to help find another badante. Katrin’s treatment passed like a dream. Sleep at night was interrupted and in brief stretches.

Saturday, July 3

Limpness continues. Spent the later part of the day writing requests to friends for badante candidates; the most time I’ve spent working at the computer in months. My gait remains soft instead of rigid. I’m encouraged. Sleep at night very spotty, no comfortable position until 05:00. Even then, did not sleep well or long; attempt at vibrating chair failed. Finally slept deeply at about 07:30. Such a dramatic change from just a few days ago when I was sleeping my life away.

Sunday, July 4

Would have been difficult to get out of bed were Lucky not here just in time, I was so limp. Needed more sleep, so chair napped for about an hour. Lucky helped me up when he left, then I dealt with correspondence for bandante search, and napped for 90 minutes (and well) on bed, always on my back (no RLS). Very tricky getting up, imagined my way as best I could, and eventually made it. Why I can’t sleep as well as that on my back during the night, I do not know. Napped again at 15:20 for less than 30 minutes – seemed like hours – also a challenge getting up. More work wrapping up badante search, grew tired and a bit nervous from all the activity. Another profound nap of about 40 minutes, woke feeling my mother’s loving presence and missing her terribly. Getting out of bed still difficult, walking a bit easier, and the gait remains soft. I re-read chapters Recovery from Parkinson’s on Limpness and Dyskinesia and understood them for the first time. Experience fosters clarity. There are subtle improvements in being able to initiate movement. I’ve not felt massive discomfort in a week or more – or rather only brief periods and of less intensity. Imagining movement is still largely confined to the next step or gesture, I fall asleep trying to do anything more, but no effort is wasted. Today sitting and rising have both been more graceful and solid than in the past few days – though to be accurate, changes of all kinds happen hourly, not daily. 

Monday, July 5

Went to bed around midnight and slept in short shifts until about 05:00, transferred to vibe chair and was totally out in minutes for two hours. Returned to bed, and using the formula “commit to sleeping in whatever position I land in” slept until 11:00. The recovery symptom of sleeping 18 hours a day seems to have passed, and I’m not sure what’s taking its place. Am able to walk unaided this morning, and once the foot pain wears off (usually after a few minutes) the gait is not too ugly. Posture is wretched, but I’m slowly able to rise into it. I met Darina, new badante of unknown duration, at 12:30 (she’s great). I didn’t realize how symptomatic I was until there were guests, or… social pressure has that effect; voice hoarse, tremor more apparent. But walking drew applause from Katrin, my physiotherapist. Napped in vibe chair for more than an hour until about 15:15. Woke groggily, weather very hot. A fear of failure (of my recovery) is gone; I feel both more confident and that the process is not entirely mine to own, if I can stay connected to Friend and enjoy the unpredictable details as they mysteriously appear. The day ends with my gait less fluid than earlier, but still softer than before. Getting up and down is also clunkier. The middle of the day was stuck in a blue chair to endure the heat, perhaps all I need is to move around and imagine dancing.

Tuesday, July 6

I slept relatively well (with several interruptions) from midnight until 06:30. I fixed breakfast on my own, and was ready to go (for shot number two) when Darina arrived at 08:00. She’s bright, sunny, brave, and forward thinking. We left for the vaccination center at 08:30, arrived about 20 minutes early, were taken right away by a group of wonderfully friendly, helpful people, and were back home by 09:30. Then Darina gave me a foot rub, gentle, enjoyable and sleep inducing. I woke from the automatic nap so limp I could only imagine getting up, but once moving around, I felt stronger. And thus the day unfolded, waiting. For shiatsu, for sunset, for the big event of the evening – opening windows to the Giovenale breeze, or at least to what remains of it after the zigzags of the medieval quarter have their way with it. Shiatsu was, as usual, astonishing. I told Michele that I was aware of and working on neck tension. He said afterwards that my work has paid off, that the neck was looser, then to prove it, he worked on neck and shoulders for five more minutes. I felt like a thief. Now he’s off to work outside of town and sneak bits of vacation, but if he finds himself in town with time on his hands, he will let me know. I almost cried. Then he instructed me in a technique for imagining movement immediately before it happens, an exercise central to recovery, and one I’ve been having difficulty with. One waits for the evening breeze and it comes delivering treasures.

Monday night was particularly weird and tumultuous, even during these times of unpredictable sleep patterns. Around four in the morning, I wrote Janice (Hadlock) at the Parkinson’s Recovery Project. I had already submitted my weekly report, but felt compelled to write again. This is that exchange.

“Dear Janice,

An extraordinary report for an extraordinary night. First, Monday’s events and changes.

At some point in the afternoon I was laying down on my back, I ‘heard’ a click, and something in my neck let go; the words that went with it were ‘from effort to trust’. Since then even though movement has been as hard or harder than ever, the sense of heaviness behind it has gone away; for example, I’ve been able to do swinging exercises easily that were very difficult as recently as Sunday.

However…

Sunday night I could not sleep. At around 05:00 I gave up, put on lounging clothes and made the bed so I could rest on my back. I was asleep within minutes and slept for three hours. So, Monday night I decided to rest on top of a made bed in something like pajamas the whole night from bedtime. I lay down at 00:30 and slept for an hour and a half. My left foot and calf were active (spasms, jerks, and twitches) for what seemed in my dream state the whole time, and almost without pause (the left foot had the surgery). Turning over or adjusting positions was as if I were dressed in fly-paper. At at least one point I began to tremble all over, and seemed it could become violent if I were able to release — but a good thing, however unpleasant. Dreams turned to nightmares, limbs to lead, left foot to a block of wood, and foot and calf to constantly active raw meat. When I finally woke I got up, had a bit of water, and went back to laying on covers, I was surprised that the bed was barely rumpled, it felt like it should have been chaos.

Then I fell asleep and repeated the whole experience.

Getting out of bed the second time was even harder, but once out the left foot fell quiet and even though standing and walking was painful, it was no more so than has been usual for the last few days. Typing is a little awkward but not terrible. Right arm is notably loose. I dread another session, so may stay up awhile. It all feels like more than it appears, and although my inner voice says that it’s ‘all melodrama’ something weird is going on.”

I stayed up for a half hour during which Janice wrote back.

“this is recovery, not withdrawal. so cool. congrats!

not for the faint of heart. this is your body coming back to life and starting to notice all the horrors that have been accumulating in your body as you were busily ignoring it.

this is fantastic news. yes, it can seem like the universe is testing you. but these are just the torments you’ve hidden from yourself and/or created in your mind to keep yourself obedient to the mindset of Pause.

fantastic.

and see why i get so livid when people say, ‘well, if a person recovers, probably the person was misdiagnosed’. no. no no. the stuff that happens during recovery is so bizarre. it only happens to people who are recovering from parkinson’s. and each person’s stuff is unique. this is not ‘projection’ due to having read my book. if you’ve noticed, the recovery chapters are nearly half the book. and keep repeating the theme ‘each person’s recovery is unique.’ because this is a mind-created syndrome. and each person’s mind had its own reasons, and created its own storyline. so each recovery is its own incredible event.

you’re doing great. hang in there.”

My response to hers…

“Wow, that is not at all what I expected to hear back! I sort of thought (and still hope) that there might be hints of what is going on with my feet in all of this. Well, great!  

My third round was preceded by warm milk with a splash of rum, and consisted of 90 minutes of good sleep mostly on my back, no Bosch paintings. I’m going for the vibrating chair now, then a ride to Bardano to get my first shot.  

Thanks so much for the quick response! And the great news! Andiamo avanti!”

That exchange says it all for now. I’ve been sleeping like a baby ever since – and on a baby’s schedule, too.

Look up Parkinson’s disease on the web and you will probably get a description that includes “an incurable, progressive, neurodegenerative disease of the central nervous system of unknown cause”. 

I vividly recall a textbook I was provided in sixth grade that divided humanity into five ranked categories in its description of anthropology; the most evolved of the species was represented by a bearded European and the least by a native of the Australian continent. When offered a choice between the standard definition of Parkinson’s and this sentence that I stumbled across last January, “Idiopathic Parkinson’s disease is not – and never has been – an incurable illness,” the contrast is stark. As I explored further, this new approach to the disease made more standard ones seem as evolved, and as accurate, as that sixth-grade definition of anthropology. Since the disease could not simply be ignored, why go hurdling towards a dead end when a viable alternative offers a strong possibility – not just of management or delay – but recovery?

Several friends reading my recent posts piecemeal or out of sequence have expressed confusion as to what I’ve been going through. So, without attempting to include technical detail on the recovery program itself (because I will get it wrong), here is a blow by blow timeline by way of a catching up for those who, because they care (thank you) are confused.

Various medically-trained friends have said they noticed signs of Parkinson’s in me as early as spring 2016. I first noticed an internal tremor in my right arm in April 2017. In the fall of 2018, it was obvious that something was going on with the nervous system, and I was encouraged by non-doctor medicals to seek a diagnosis. After several doctors rejected the idea, and my having to change a primary care physician, a test was scheduled for May 2019. While it cannot demonstrate the disease directly, it came back positive on its probable presence.

I was put on a trial run of a very light dose of levodopa medication, didn’t like it, and was granted my request to stop. Then followed a year of other issues and treatments, the Parkinson’s always in the background.

Last November, I allowed myself to be convinced to resume the levodopa medication at a higher dose. I figured it would give me a few months of relief from the annoyances of the disease during which I could seek other treatments that felt less toxic to me, and perhaps ones that more directly address the problem.

On January 21, I stumbled across the website for The Parkinson’s Recovery Project in my old home of Santa Cruz, California. There are over a thousand pages of material available, downloadable without cost, on a program that has cured hundreds of people of the disease. I started reading immediately and did little else for several days. On Sunday of that week, I wrote to the email address on the site to ask if there were anyone in my area who could guide me in pursuing the program. The site warned that understaffing meant replies could take months, but I figured it would take months for me to completely stop the medication in a safe manner, so I may as well write. The literature had convinced me that the anti-Parkinson’s drugs were best avoided – at least for as long as possible – and that my window in which to seek alternatives was one of weeks rather than the months I had earlier conjectured.

I received a reply in less than a half hour. After a few exchanges, I realized that I was corresponding with the Project’s founder and director, and she was already guiding me towards information that would allow me to begin working on a cure for Parkinson’s. She just this week explained that her quick response was due to my artistic background, which appealed to her, and that she enjoys my style of writing. Finally, a tangible advantage to having followed a theatrical career!

The first step was a four week schedule of reducing the anti-Parkinson’s drugs to zero. That was followed by a ten to twelve week period of withdrawals. Together, dosage reduction and the first four weeks of withdrawals were not difficult at all, and there were already signs that recovery had begun to take place by the end of that period. Then the fifth week of withdrawals hit, and from then to this past weekend (and maybe further) was about a body (mine) under siege. Every day brought with it a surprise, none of them pleasant. I was warned that the effects of withdrawal are like the disease’s symptoms writ large, but had not the imagination to understand exactly what that meant.

“The fifth week is when you hit bottom – and you stay there for five or six more weeks” my guide, Janice (aka JJ) warned me. I attributed to her a degree of poetic license. I was wrong. She was being coldly accurate. I have never endured anything like it (and am not open to discovering worse, thank you very much!)

This past weekend the direction of things began to shift. On Tuesday, my walking had improved to a degree that almost shocked me. Then, as Janice warned, I lost some of that ground. But the ravaged sleep patterns of the past weeks seem to be correcting themselves, several typical symptoms of PD have disappeared, and there are stirrings in my nervous system that are entirely new and promising. 

The road of recovery is littered with interesting symptoms, too, as the brain builds its post-Parkinsonian switchboard, but they are somewhat predictable, and generally change quickly, so while the weeks ahead may also be full of surprises, they promise to be pleasant surprises and towards a desirable and foreseeable end. According to what I report, JJ tells me I am right on track for the full benefits of a recovery. Perhaps even more significantly, Michele, my shiatsu therapist, and Katrin, my physical therapist – both for five years or more – tell me that my body has never been as receptive to treatment. There is hope on this path, and even a tenuous hope is far preferable to an assured dead end.

If you know of anyone recently diagnosed with Parkinson’s, I strongly encourage that they carefully review the materials available at pdrecovery.org before they are very deep into taking the drugs – or before taking them at all. There is a viable, real, and exciting alternative that requires a leap of faith and a commitment of time, but could leave them with the healthiest nervous system they have had in decades.

Suddenly, there was a flurry of pigeon activity outside my bathroom window; always a pair, sometimes a trio. I watched this for a day or two before I realized they were scoping out a cote. This made sense for the pair. The third I imagined to be an anxious mother-in-law or the avian equivalent of a real estate agent. There were dozens of inspections before the first twig was brought in to construct the heap that would eventually serve as a cushion for mama’s eggs. They were shopping – buyer’s market.

The hardware to secure the left shutter to the bathroom window doesn’t function, and the enclosed space that defines is perfect for holding a pigeon’s sloppy nest. But the interior wall is glass, so while the couple may enjoy all the modern amenities of a dream cote, they wouldn’t have much privacy. As the nest piled up, I figured my frequent invasions on their space would convince them to move to a better building, but when, a few days later, I cautiously lifted the curtain to check, I was greeted by two beautiful eggs nestled on a little pile of soft trash. From then on, as soon as I came into the room, mama pigeon would spring to her feet and fly away. I tried to limit my intrusions, but it was difficult. It’s a bathroom.

Then a curious thing began to happen. I had been mentally apologizing each time mama’s brooding was disturbed, and after a few days, she stopped hopping to her feet. She just sat there, her inquiring eye alert but not afraid. We had learned to coexist.

Not so with the drugs I’d been taking for Parkinson’s. When it turned out that what I thought was my ninth and second-to-last week of withdrawal was actually the “dreaded fifth” the drugs were sent to a friend’s house on vacation. I was taking no chances with reacquaintance. 

The dreaded fifth is aptly named. Bottom was identified and hit with a loud, painful slam. I’m now approaching week seven, and I’m beginning to feel vaguely human. But only sometimes, and the progression is neither steady nor straight.

My first reaction when JJ broke the news to me that – due to my having started the ten-week countdown at the beginning rather than at the end of the dosage reduction period, I hadn’t skipped blithely through withdrawals but was just shy of the halfway point – was horror. Great! I get to feel indescribably awful while living alone, in a walking town I’m unable to walk in, during a lockdown. And it could last for at least five more weeks. But in many ways being alone has been a blessing. For a few days last week, the presence of even my most cherished friends caused me to tremble uncomfortably. And knowing that my brain’s putting me through unpredictable emotional and physical contortions was alarming only me, was rather a relief. No one was going to send me to a hospital to be force fed the drugs I had spent weeks flushing out of my system. I was miserable, but I was safe, and on this path feeling safe is essential to a good outcome.

I’m now approaching week seven. Week five was simply awful. Week six was full of surprises, but overall a lot easier to bear. There is a fair amount of variation in how I feel hour to hour even as the week as a whole is less burdensome, but I am confident (as I can be) that week seven will see at least sparks of normality.

Then yesterday, while randomly reading from JJ’s book, Recovering From Parkinson’s, I ran across a series of passages that together delivered a narrative that exactly described my experiences of the past two weeks; case studies of patients who were by chance in withdrawal and recovery simultaneously. That reassured me.

I’ve been keeping a daily log of no literary merit, but anything narrative requires dexterity and a tolerance for being at the computer with all the tiny movements that that demands, and my body quickly rebels, so writerly writing (like with grammar and stuff) had to be put on hold. Fortunately there is Netflix (which works “most” of the time) and YouTube and PBS, with movies I’ve loved and love seeing again, and others I’ve long wanted to see. That Netflix has different films available on my computer than it does on the television is a mystery. But now that I am not in the rage phase of withdrawals, solving it allows me to use up time going back and forth between the two screens trying to effect a work around I discovered which is also maddeningly inconsistent. Everything that takes up time without agonizing side effects, is welcome.

Each day yawns wide at waking, often with only a shiatsu, a visit, or a phone call as punctuation, but I somehow get through the hours to bedtime. Then sleep may happen for two hours or ten, depending on what I do not know, but nights are got through as well. That it has been a year of variations on this theme for millions of us prevents me from dissolving into self pity. We all recognize the outlines of those yawning days, even if the particulars are different.

I’ll get through this, and it will be worth it. We are getting through this, and hope dearly the larger resolution will be worth it, too.

In the meantime, mama pigeon grows ever more used to my presence. I can sit right next to her and admire her soft iridescence without provoking a ruffle. I read that pigeons reproduce over the full course of their lifetimes, so this brooding is something she is probably really good at. Perhaps in admiring her I will learn something about hatching my own promising outcomes. Nothing is for naught.

While I was visiting my Croatian cousins in 1975, a neighbor who objected to the weekenders from Zagreb driving past his dining room twice a week as they came and went to their cottage, hung a gate off his house to stem this rush of one-car traffic that was ruining his illusion of solitude. The town went nuts. “He’s blocking a path,” my cousins explained, “paths are what connect us, what hold us together. Only crazy people block paths!” By the time I left a week later, the gate was down and the couple from Zagreb were once again free to use their driveway on Friday evening and early Monday morning. Sanity had prevailed.

Paths are what connect us. Paths can also represent habit, good or bad. A new path can be the difference between health and illness.

When, a couple of years ago, I finally sat down to begin work on the play, Colloquia, I was not at all sure I was up to the task of completing it; but over the next year I did, and at least I and a few friends thought it rather good. It eventually took on a life of its own and helped to celebrate the anniversary of an important event in Orvieto’s history, one made possible by two men who discovered paths that connected them.

When I sat down to write my first blogpost in November 2015, I had no idea of where it would lead me, or if I could follow. This one will be number 207 (and that is a surprise, even now). The journey has taken me down paths previously unexplored, and caused me to forge new ones.

When I first encountered the literature of the Parkinson’s Recovery Project, that it expected me to become aware of subtle channels – pathways of electrical and luminescent energy as described by Asian medicine – seemed an impossible challenge to meet. A few weeks later, and I am spontaneously and vividly aware of those channels at least a dozen times a day, and often for minutes at a time.

What we imagine as being beyond our grasps can, with a little persistence, become a path. Stop now, and recall a few examples of this same phenomenon in your life. It happens to everyone.

Just for our amusement, behold a roadmap.

My posture is still hunched, but it no longer feels pressed into that position; less of a stoop and more of a droop.

My gait is still unsteady and random, but there is a security in the legs that has been absent until this week.

There is often tension in the thigh muscles, but it goes away for hours at a time, now, where as before (like last week) it was a feature of my so-called physique.

The right arm, for four years the home of an internal or external tremor and annoying heaviness, has been mostly quiet for days (even in tremor’s favorite, secret positions), and today the weight has lifted. Sometimes the arm even swings when I walk.

I’ve been going to Michele (or he has been coming to me) for shiatsu on a regular schedule for almost two years now – barring lockdowns – and irregularly for two years before that. After last Wednesday’s very undramatic session he remarked that he had never in all that time found my body so relaxed. I felt it, too.

And all this is framed within a reminder from Janice (at the Project) that it is ten weeks after ceasing medication before withdrawals end; for me that’s mid-May, another reason to look forward to the glories of spring. A spring, I hope, that will include a walk or several on a woodsy trail.

Still, when I’m asked how I feel, I fear saying “better” with too much confidence. I suppose I do the same when someone asks how a writing project is coming. Insurance is a human concept. It is also a way of hanging a gate across a path.

I did find a rather startling internal gate this week; not something I’d been totally unaware of, but the habit fell under a strong spot light. Whenever I recall a particular embarrassment, something I did that was stupid or insensitive, or a moment of arrogance or selfishness, something collapses and I say to myself “I wish I could die and get it over with”. Not exactly an affirmation, and a nasty way of returning to a state of numbness in lieu of celebrating my imperfect humanity – and my survival as a living being. It is of value, I suppose, to recognize the idiotic things I’ve done or said, but there is no reason to punish myself over them on a daily basis. And with every choice to forgive, a surge of electrical energy surges up my spine and into my head. Learning to be kind and loving to myself is an integral part of healing. Those paths must be maintained and routinely cleared to allow for movement.

And so I creep forward. It’s not easy opening myself to patterns and concepts foreign to my western mentality, but it is always worth the effort. And as a friend recently pointed out, I’m doing this for my own health – my own recovery from a condition that conventional thought routinely describes as incurable – but each effort I make is also an effort on behalf of a community of people with like symptoms. 

My father is long gone from this world, and although I cannot do his work for him, my efforts benefit him as well – to heal his Parkinson’s in memory. My cousin Shirley passed into a reality beyond Parkinson’s the day before I discovered a similar reality in the form of the Recovery Project on this side of the gate. Their company has encouraged me to move forward on a remarkable journey towards an option that was not offered them. And as I begin to know what to look for, I see that the way is well-marked and moving on its twisted course can become a source of joy and wonder. 

If, as my cousins told me, paths are what connect us, then movement along them is the essence of life.

I think it was February, I know it was 1970. I was crossing East Broadway in Tucson, at a corner but one not marked for pedestrians. I didn’t see the lady from Tombstone in the gray Nash Rambler, and she didn’t see me. The car clipped my right hip, sandwiching my right hand between metal and flesh. I spun, and fell into the two lanes of opposing traffic.

I obviously survived, but in those moments on my back as I watched oncoming vehicles trying to come to a stop, I wasn’t at all sure I would.

Wednesday is my usual day for shiatsu massage. Michele comes to the house now. The route to his studio is not long, but it involves stairs and hills, and I’m not yet ready for those. So, he brings his pads and sets up on the rug in the living room. The sessions have been my favorite hour of the week for several months. Wednesday before last (that would be February 24) the session turned odd half way through. The first part I was laying face down, and as always, it was paradise. Then I turned over onto my back. Within a few minutes, the muscles in both legs began to clench, and that was followed by trembling in both arms. To be fair to that particular day, similar things had happened before at the halfway mark, but Michele was able to quiet my body, and the second half would end as happily as the first. But on Wednesday before last, it took him longer and I came out of the session feeling a bit torn up.

This last Wednesday followed the same pattern, only Michele was able to do nothing to quiet the movement which only continued to grow in severity and discomfort. Neither was I able to control it, and all attempts only made it worse.

“This is not the Parkinson’s you’ve been diagnosed with,” Michele told me. I agreed, something else was going on. “There’s stuff inside that needs to be released.”

“The first part was heaven, and this, on my back, is like the other place!” I managed to croak between violent trembling.

“You’re more vulnerable on your back. No one wants to live in hell. Let go of it.”

So, I did.

Now the accident in Tucson had been playing in my mind for a week or ten days at that point. The central tenet of the protocol I’m now following (The Parkinson’s Recovery Project – www.pdRecovery.org) is that the body gets stuck on what is called Pause Mode, that point of high threat to existence when all awarenesses are shut down save those that are essential for continued survival. In some people, Pause is never turned off. There are chemical compensations that the body makes to afford its functioning, and at some articulative point in life – the kids all graduate from college, the house is paid off, one has retired – the reduced pressure to function undermines that effort of compensation, and Parkinsonian symptoms begin to appear. This is a short-handed version of a much more nuanced and varied process, so suffice to say that I have been entertaining the idea that the accident of 1970 is what threw me into Pause. Symptoms began to show shortly after I retired.

But playing through in the back of my mind was not what was happening on Wednesday. When I took Michele’s guidance and let go, I began in many ways to re-experience the accident, and writhed and screamed and groaned as I did that day in 1970. And shook, and felt myself seconds away from death.

The usual one hour session took two hours to complete. I had scheduled a phone call for an hour after shiatsu was supposed to be over. The call came as Michele was leaving.

The call involved a meditation session. During that, I relived the accident numerous times again. The first time, I realized that I had been seeing the entire ordeal from a vantage point outside and to the left of my body. With each repetition, the experience became more detailed and more embodied. By the end of meditation, I had replayed the accident several times from an associated perspective, each time more clearly.

I was hit as I described above, spun, landed on the pavement on my left hand, knee, and forehead, then flipped onto my back. As I struggled to rise, I saw the oncoming vehicles, turned onto my left side and dragged myself to the shoulder of the highway, where I again fell onto my back. It all took about fifteen seconds.

As he was packing the pads and readying himself to go, Michele noted that we had been talking for several minutes without my having put my hearing aides back, and I’d had no difficulty understanding. When I put the left one back, everything was way too loud. A month after the accident, my hearing disappeared one night at a performance of a graduate thesis project. I went to a doctor who gave me niacin infusions, and it was seventy percent restored – and there it stayed.

Michele also told me during that conversation that I should probably expect a few days of stronger Parkinson’s symptoms, and according to several similar experiences recorded in Recovering from Parkinson’s, they may be followed by those same symptoms going away entirely over subsequent weeks or months. So far, such has been the case for the first part of the expectation. Here’s hoping that the second part will also be borne out in time; as of Sunday night, there seem to be good beginnings.

One of the things that has gotten me through the days of strong symptoms since Wednesday night has been watching The Queen’s Gambit. One of the overriding themes that story touches on is the advantages of having a team. I am blest with health practitioners who, although many of them have no direct connections with one another, are working together to help me recover from what is almost automatically described as incurable. I am also blest with a global circle of friends who are willing to listen to – or read – my periodic rants as I grapple with re-wiring the mental and emotional habits that have brought me to his juncture. 

I hope someone is working on the stirring music for the teary-eyed finale. That’s my favorite part.

I’ve been struggling to find a way of chronicling what is going on as a result of my engagement with the Parkinson’s Recovery Project. I don’t want to write about the hypothesis and techniques involved, Janice Hadlock, the Project’s founder and principal practitioner, does that far better than I could ever hope to do. But without covering that ground, it’s difficult to talk about my experiences at all. So, I’m just going to write about my day, and perhaps an accumulation of days will express a process of recovery and healing.

Recovery and healing rarely travel in straight lines, no matter what the situation, and a record of my days (not all of them, but perhaps Sundays) won’t necessarily look like a healing to the observer, but rest assured, something positive is unfolding, and hopefully in a month or two that will become more apparent.

First of all, my left foot is still in pain from the surgery on the Achilli’s tendon of last summer. The pain is not in the tendon, which is, I am told, a good thing, it’s to the inside of the ankle and prevents me from walking. I’d been able to take four walks this week, the almost flat and partially macadamized route to the cliff at San Giovenale. But the foot doesn’t respond well to daily use. So, when I am crazy for a stroll, I have to content myself with pacing the apartment. That has also become the only way I can get to sleep at night; pace for twenty minutes and I’m down as my head hits the pillow, neglect it and my body waits until I get up and do it. And that was the case last night. I was tired, I went to bed, dozed for like four minutes then lay there with no interest at all in sleep until I got back up and walked the walk. It was a lousy walk, the left foot hurt with every step and I was wobbly as hell, but it did the trick.

This morning my early task was to write my friend Giuseppina whose husband Franco is a retired acupuncturist. At the first Italian language performance of Colloquia in June 2019, the audience hung out after curtain call not content that the evening had concluded. So, first Giuseppina, then Franco, stood and made extemporaneous speeches about the power of theatre in building communities. I could not have been more astonished. So yesterday when acupuncture came up in conversation with my American friend Candace, and as I watched myself reject the possibility that Franco would agree to give me treatments, I finally connected my need with their post-show speeches, and understood that I was just being shy. I messaged Giuseppina on Facebook. She wrote back immediately and Franco will make a house call tomorrow afternoon. Acupuncture has been remarkably effective in relieving pain before, so my hopes run high.

A few more tasks like that brought me to lunch. I’m sick of my own cooking. I want to walk, yes, and to an eatery where I can sample someone else’s version of lunch. But the ankle was bad and I knew a walk would be unpleasant and counterproductive, so I fixed a salad. Now eating is among those activities that can (but not always) cause my nose to run, and such was the case at lunch today. I blew my nose between bites at least a dozen times, then – had I been counting – I lost track. That enraged me, and by the time I finished, I was ready to throw things. Laundry was next, so I contented myself with kicking a plastic clothes basket a few times while shouting expletives. Then I lay down in the sun that streams onto my bed in the early afternoon.

Once I’d relaxed a bit, I tried doing some of the techniques relating to recovery, but after a few minutes I dozed. I woke to one load dry and a second ready to go in, so I did that and lay down again, this time at least touching more firmly on the techniques. My legs didn’t contract as they have been doing when I lay on my back, so I ended with a silent thanks.

After laundry was put away, I hobbled to the study to see if I could work. Now, the week was marked by the arrival of Apple TV on Wednesday. On Thursday, I was limber enough to physically set it up, and watched Cinema Paradiso because I stumbled across it. There were no subtitles, but I wept and sobbed my way through just the same. Friday afternoon, I watched The King of Hearts and realized that I’d formed crushes on every actor in that film way back in the early seventies, and had not recovered even a little in the decades since. But my goal was to watch The Dig.

I found the film on Netflix on my computer, but it would not show up on the tv. So, I tried AirPlay, and Mirroring, and whatever else was suggested. Nothing worked. I wanted to walk off my frustration, and that I couldn’t increased it. I finally tried streaming the film from my phone to the tv, and got the message that I had to use the television app instead of the phone app. Then something odd and wonderful happened. Because I had let the film play for a few minutes on my phone, it was now listed on the tv as “recently watched” so I chose “play from beginning” and the rest was history.

However, all those attempts at coupling computer and tv seemed to have had a negative side effect. Since my first effort at media magic, when I’d come back to my computer all the windows on the external display were screwed up, repositioned, and resized. This had never happened before, and as I keep a lot of things open, it is incredibly tedious to put everything back. Once I’d found the workaround for The Dig, I shut off all mirroring or streaming options to prevent the windows from going nuts again, but this morning when I logged on, everything was chaos.

This afternoon after a raging lunch and laundry, when I sat to work the windows were all screwed up, again. Need I mention that this enraged me? And I wanted to walk it off, couldn’t, so I screamed a lot and eventually found a little app that will probably fix the problem.

Two things are almost guaranteed to annoy me beyond reason; petty and bothersome bodily malfunctions and problems with electronics (many years ago it was typewriters that would make me ballistic – go figure). Today, I got a triple whammy.

One of the central tenets of Recovery is that the “patient” feel safe. Sometimes that means finding peace with things emotional. Friday, it was hole-in-the-heart sadness. Connect the dots. 

January 31, 2021

I have kept it no secret that I was diagnosed with Parkinson’s Disease in May 2019, just as we were beginning rehearsals for Colloquia. Due to budgetary concerns, I had decided to direct the Italian language version, a choice I regretted as soon as I realized that, except in a very generalized way, I couldn’t really understand what the actors were saying – despite the fact that I had gone over every word that Andrea had translated from the English. 

Hence, most of my notes were in English. Both Riccardo and Emilio have an excellent command of the language – and after hearing me give an interview to a couple of local journalists, insisted that my Italian was good enough to function in rehearsals – but I couldn’t think in Italian as a director, and the diagnosis had made the PD symptoms stronger, so having to translate mentally from English in order to give notes in Italian was a steeper expenditure of energy than I had to draw upon. Fortunately, the actors connected well to the material and with each other, so we pulled off a series of good performances in the end, regardless of how present I was during the process. Which was not very.

The next year or so was spent trying to come to grips with my new reality. Friends with experience in observing or treating the syndrome had intimated, or outright told me, that signs were apparent much earlier than the official diagnosis. I offered the possibility of having the disease to a number of physicians along the way, none of whom agreed. I finally changed primary care providers. When my new doctor ordered an MRI, it was a bit of a victory, but from tests made in his office he was still skeptical. It was only because he happened to see me trudging up a hill one day that he changed his opinion and ordered a DAT scan, that is, one more likely to demonstrate the possibility of PD – or as close as a machine can come to detecting it.

Beginning on opening day of Colloquia, I gave the go-to pharmaceutical, Madopar, a try on my doctor’s recommendation, at the very low dose of 50 mg twice a day for four weeks. The only real difference I noticed was that it immediately made me drunk, and I stayed drunk for the entire trial. Towards the end of that month, I saw a neurologist who recommended a steeper acceleration. When the higher dose made the drunkenness more pronounced, I asked my doctor if I could stop the drug. He said sure, if it makes you feel worse, don’t take it. 

But I felt that if I had PD, I was obliged to have a neurologist. The one I had visited in Rome was too difficult to get to, so I filed that obligation away and turned it instead into a mild annoyance.

Then I heard about fecal microbiota transplants and commenced my time in Bratislava. I have fond memories of Bratislava. It was not a vacation, but it was a relaxing adventure. I loved my little apartment there, as bland as it was. It was comfortable, had an elevator, a balcony, and a workable kitchen. I noted at the time that were it possible to transport my temporary abode to Orvieto, I would do so in a heartbeat.

Upon returning from Bratislava, I resumed my daily hikes, but instead of their being filled with an exuberant appreciation of the changing seasons, colors, and light, I worried my way through them. I compared today’s gait with yesterday’s. I argued with the diagnosis. I attempted to come to terms with the host of discomforts I had with conventional descriptions, treatments, and attitudes towards Parkinson’s. I observed improvements in my condition, though I couldn’t really say if they were a result of the treatments I’d received in Bratislava, a bi-product of my walking, meditation, and yoga, or simply my having achieved some temporal distance from the diagnosis. One thing I could say for sure, my digestive tract had never functioned better!

Then just before lockdown, walking became difficult; the left foot began to drag, it was hard to avoid shuffling.

Walking during lockdown was necessarily reduced to circular strolls of my courtyard and neighborhood, broken only by weekly outings to shop. I lost touch with the state of the gait, noting only that it was harder to function around the house, with its myriad small steps and detailed movements, than it was to stride the streets.

When May arrived, I hit the trails again. My first few outings showed good, healthy physical and mental habits, but over a span of weeks, they became difficult to maintain. Then I hurt my left tendon, and the shape of the next seven or eight months was predetermined. A shape that was outwardly tedious, but rich with inward growth. I came to appreciate my friends, near and far, in ways I could never have anticipated. I grew used to doing “nothing”. 

In October, I took a new apartment. It is bland, comfortable, has an elevator, a balcony, and a workable kitchen. Be careful what you wish for!

Ten days ago, I stumbled across an organization in my former home of Santa Cruz called The Parkinson’s Recovery Project. They offer five, long, detailed books one can download for free. They describe the syndrome more clearly, and with keener insight and intelligence, than anything I had heard before. They present PD as curable. There’s no scam. The conclusion is based on hundreds of cases over a twenty year span and solid science. I read almost a thousand pages from two of the five books over the course of a weekend. In response to the persistent annoyance at not having a neurologist, I had finally seen one and had begun a moderately low dose of typical anti-Parkinson’s drugs in November. What I read convinced me to quit before I sustained permanent damage to brain health. Desiring some guidance on how best to proceed, I found an email address. There was an attached disclaimer that due to huge volume and small staff, reply time was several months. I wrote anyway.

Within thirty minutes, I received a reply from someone who had looked at my photo, my website, and read several of my blogposts. We began an exchange, and after a few messages I realized I was communicating with the Project’s founder and author of the books I’d been reading. She agreed to advise me on the transition off the drugs by pointing me towards information publicly available in the literature. She also said that recovery was a process that needed no professional assistance (some specific techniques within Asian medicine and physiotherapy could be useful, and those are techniques the therapists I know here are schooled in), but it was vital that I be free of the pharmaceuticals prior to beginning. She said I could report my progress to her as I found helpful.

I’m about halfway into dosage reduction and the side effects have not been horrible. So, an adventure awaits. I’ve not read the book on the specifics of recovery as I don’t want to be tempted to begin before my brain is ready, but all that I’ve read to this point is sensible to me in ways that nothing else regards Parkinson’s has been. There’s naught to lose but my symptoms, and they have already reduced in the past few days thanks to a surge of positive energy (and a diminishment of worry) that has come with my discovery of the Project. I’ve shared this new beginning with several friends, many of whom have encouraged me to document the journey. So, hello there! You are welcome to follow my progress through the posts that begin here. The posts will be occasional, and probably after the fact rather than daily reports from the “front”. But I have a feeling it will be an interesting ride! Thank you in advance for your interest. I trust it will be worth all our efforts – and more.

You can read about The Parkinson’s Recovery Project at https://pdrecovery.org