Category: Recovery

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 will depens 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. Waking relieves soreness in feet, but to take 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, July 14

Could not refind comfortable sleep last night save for brief periods when I succeeded in throwing myself onto a couple of pillows and accepting the form that resulted. But the longer result is numerous naps with groggy and grumpy periods in between, twenty-four hours a day. Nights are for despair as I reach the end of what options I have for taking, doing, or finding something to allow or encourage sleep. But I somehow keep going. When I am groggy grumpy during the day, I feel sometimes like I’m dying, probably from the heat. I called Bruce in a panic on Monday more or less committed to the idea that I was going to become a statistic for old people dying in overheated isolation, a victim of climate change. But each need is addressed in the mysterious way that I see more and more of. This morning I told Roman that I needed a pedicure (my feet are a tangled mess). Around six I hear from Lisa who does not know Roman that she has found a lady who can give me one on Saturday. Small town life, but also miraculous.

Thursday, July 15

Terrible night trying to sleep. Mind up to its old tricks again, subverting every comfortable position, RSL subverting any that involves lying on my back. Groggy as hell early, slept hard after foot rub, had a hard time shaking myself awake afterwards. Doctor Pimpolari arrived early. His English is perfect, his mind open, he’s pleasant and prepared. He ended with “We’re a team, nothing will be encouraged that is apart from your wishes.” I could not be happier. Naps happened, both intentional and otherwise. Walking extremely tentative at times. Also limpness very strong at certain points. By the way, limpness is a symptom of recovery, it stands in contrast to the rigidity of Parkinson’s. Many of the recovery symptoms could be characterized as being opposite to the symptoms of the disease. I have, or have so far experienced seven of the ten major categories of recovery symptoms. Some, I found to be difficult to ascertain, while others like red fungus, are clear. Limpness has been both.

Friday, July 16

I took eight drops of the sleep aide the doctor prescribed. I slept. Next morning I felt drunk. Even walking with the walker got out of control. The feet hurt so badly in the early part of the day that is was both scary and discouraging. I slept through the foot rub and for two hours after. Difficult to stay awake all day. Session with Lisa was mixed, but I still enjoyed it. I went away convinced that I have distorted my voice – in whatever ways those words can be understood – for all of my life. We decided to work on an Italian art song for next time, and find my voice in that. The rest of the afternoon was filled with friends, all of them leaving tomorrow. But I ended feeling a bit sad and discouraged, without real reason – but still. I’ve grown tired of bean counting (this little pain is gone, this little annoyance is back) and still find it challenging to imagine healthy movement, a practice central to my healing. But for a super lucid moment with Lisa I understood that freeing my voice is somehow essential to my healing, so I must give that the power it deserves. 

Saturday, July 17

My parent’s 86^th wedding anniversary. I took an appropriate dose of the sleep aid last night, slept well through 07:30, then opted for the vibe chair where I enjoyed an hour without restless legs, then went back to bed until Lucky arrived. I felt different. Parkinsonian symptoms seemed lighter, a lot lighter. Feet were still sore, but they were less wooden, less burdensome. When Roman arrived, he celebrated my return to health, a bit prematurely, but something in his observation was correct. I ate a late breakfast (“It’s almost lunchtime, why bother?” said Roman) there was a foot massage, I rested, everyone left and after yet more rest, arrived Maria Rosaria to give me a pedicure. My feet were an ugly mess, and she makes house calls. After more than an hour of trying to repair them, she declared them half finished and that it would be best if she were to pick me up on Thursday morning and take me and my feet to her studio for the the remaining half. They look a lot better, but I saw her point. By the one hour mark, the need for lunch, the uncomfortable position, and the conversation in Italian had worn me down. She helped me rise and get started on lunch, then I showered and shaved and – you guessed it – sat in the vibe chair for what turned out to be a significant nap. Again. Again, Parkinsonian symptoms seemed somewhat lighter afterwards. The most annoying stuff has to do with the feet. Nevertheless, I woke despairing of ever again having a sense of purpose beyond that of survival between naps. So, I took another nap. Then, with Roman’s admonitions ringing in my ears, I did a dozen laps in the hall, stopping at the turn for each to imagine what it will be like to walk well again, and soon I saw the light in my spine and felt its potential to heal. 

Sunday, July 18

I’m sleeping a lot again. That may be the medicine (though I took a smaller dose last night) or the recovery symptom reasserting itself, or the first triggering the second. But the sleep is of very high quality and spread equally through day and night, so whatever it is, I’m grateful. Again I woke feeling less Parkinsonian than usual. Again, I can’t quite pinpoint what that means. The feet hurt strongly when I first walk after a rest, but I got through that to walk the hall for twenty minutes, and for the first time, was regular and consistent in imagining what it would feel like to walk well at each change of direction. Roman continues to astound me. He is the best caregiver I could imagine having. Today’s lunch was borsch followed by vegetarian lasagna; both unique and delicious. I’ve lost a bit too much weight over the past year, and he seems determined to reverse that trend. I took a walk with Bruce at 18:40, and warmed up for twenty minutes pacing the hall. Wore my strap on sandals. We made it as far as Piazza Gonzago, then sat for a half hour or so. It was wonderful to be out, but walking was painful and extremely difficult. Perhaps the long warm up was a mistake. I’ve not been taking ibuprofen this last week or so, would that make a difference? I month ago I was walking to the cliff awkwardly but without pain, can’t imagine doing that right now. The pain is in the feet and ankles but it moves around. The PD symptoms seem less and less of a bother while the foot pain takes center stage.

Monday, July 19

Slept soundly on a half dose of sleep drops until 08:30. We followed the usual morning routine, then took the wheel chair Roman borrowed out for a spin. It was wonderful beyond expression to be out and on the streets again, more than a year and one pandemic later. Business have closed, moved, opened, expanded, and changed. I saw friends. The weather at that hour was perfect. We stopped at the Duomo for a bit of a walk, and I discovered that I am very limp today. Very. Returned home, took a nap, had lunch, napped again. Feet hurt, but not as much as yesterday. Bruce commented on yesterday’s walk that my lean-forward posture was probably stressing my ankles, and I tend to think he’s right. I tried to correct that during my hallway walks, and even just that seems to have improved things. Red fungus (a recovery symptom) is more extensive on my feet than I thought, having established itself between my toes. It seems that the red blotches above my eyebrows and on my chin may be the same. I find it reassuring. It’s one recovery symptom that cannot be the result of interpretation or projection. It is what it is. I’m being much more disciplined about hallway pacing and imagining a strong walk between laps. Yesterday I was downright joyful, just pacing and imagining. 

Today was epic in my own tiny, tiny world so deserves a proper post apart from the weekly diary format.

I slept almost not at all last night. I listened to the full set of Rodrigo, glorious stuff that on a good night will absorb my mind with flourishes and musical surprises. It did none of that. It was merely entertaining, and barely that. What did absorb my mind were the muscles in my lower back. They were tense. I needed to stretch them. To try would have been dangerous. I realized with a certain dread that being in bed 24/7 was no longer a treatment, it had flipped into the cause category. But I had to do something. My options were still limited to a flat on the back position, so creative posturing focussed on arms and legs, mostly on the legs. They could be crossed like a lazy lotus, propped up to create small cathedrals, set askew to mock a cathedral whose engineering was off, made to look like chopsticks, knitting needles, and border collies. They were all interesting positions, but in the end the lower back still hurt.

Word was I would be released today or tomorrow. Sometime yesterday morning that announcement changed to Saturday or Monday. That shift created in me a mild panic that cued the rest of my day.

There are things I’ve really loved about my hospital stay; the regular IV’s of painkillers that make me pleasantly drowsy, the washings, the diapers, the catheters. Yes, I’ve really loved the freedom to pee and crap whenever I felt like it, push a button, and have a pair of angels clean it up without the disgust that my warm creations deserved. It was like being a baby again.

That being confronted by a babble of mostly local accents, backed up with abrupt mannerisms and lots of shouting, would tie the Italian I have into knots was also infantile, but when trying to determine facts, request services and adjustments, and beg for water and air, it was a lot less fun. 

An important aspect of recovery in the Parkinson’s Recovery Project is coaxing the Du Channel to run again in the right direction. When people experience that shift, they report it as an almost shockingly animalistic surge of power that threatens ideas of polite society. When I asked a young man if he could remove a tube that seemed to have been attached to an empty bottle all night, thus adding to my miseries, he snapped full-throatedly “No! I just changed that”, and walked away, somehow without even having to turn to alter directions. “Now there’s a man with a well-functioning Du Channel” I thought. Two hours later he decided that a port in my arm should be changed when, halfway through an antibiotic injection, I winced at the pressure. He set about installing a new one without inflicting the least pain. I told him it was very comfortable, and spied a smile behind his mask. All the same energy but funneled into a different emotional mode. Du again, but with easy and intense love.

When the doctors came in for their mid-morning round up, they were only one. A young man, again dressed in black silk on a day that was breaking heat records, he rolled in his black wheeled podium that held his black notebook computer so suddenly that I had no time to put in a hearing aid. He stopped at the foot of my bed, glared, smiled slightly, and looked at my records. “Giangiummo carpadoctrollo” he said, as neither question nor statement. “Scusi?” I mumbled back. As I tried to find my aides, he blurted the same sounds four more times, dismissed me with his hand, and wheeled to my new roommate, Giorgio where he was rewarded with a glorious flood of unembarrassed Italian from Montecchio. I finally inserted an aid as he left, and practically shouted my questions of the day at him; when do I get out, and who is removing the stitches?! He paused, said I would be dismissed on Saturday or Monday, and to ask a nurse about the stitches. “I would greatly prefer Saturday” I said. He swatted at his private mosquito and made an escape I envied.

Claudio the physiotherapist came next. As I “walked” the hall with him, he explained that walking was needed daily, but that physiotherapists don’t work weekends, and that I wouldn’t be allowed to walk without one. My panic resumed.

I couldn’t eat lunch. No appetite. I blamed the heat, but that was the smaller issue.

By four I was contemplating suicide. I could not stay the weekend. To do so would be not only counter productive but dangerous to my recovery. I brewed a host of plans. The most elaborate involved Giorgio. I would call a nurse who would rush in talking at the speed of light, and Giorgio would explain what I needed by talking her into submission. As it happened, the nurse, also with a happy Du Channel, silenced him, explained that I was trying to alter firmaments that could not be adjusted, and was gone.

My next scheme involved my base doctor, Leonardo, whose English is brilliant. “I have no power, but you do,” he said. “When your case doctor comes in tell him you want to go home. You are not in prison. He has to send you.” Who is my case doctor? “I don’t know”. There are between one and four doctors visiting every morning, and mostly all different. “Ask a nurse.” NO! (temporary Du Channel kicked in) You ask one! So, I summoned a nurse and was to call Leonardo back as soon as she came in. She had good instincts – she took her time. When she finally arrived and saw me phone in hand, she immediately refused to have anything to do with such an underhanded undertaking as finding my case doctor’s name. “When he comes tomorrow morning, tell him you want to be released.” How will I know which one is mine or if he’s even here? Giorgio got involved, tried to explain my position. Nothing changed. She left.

Then it occurred to me. I have a well-placed friend; Franco, the retired doctor who worked pronto soccorso (ER) for more than twenty years.

I called. I explained. “We’re on vacation but let me see what I can do. Call you back.” Five minutes later, “Can’t call your doctor directly this evening, but I will tomorrow morning and he’ll have everything ready for your release.” 

How very Italian.

It hasn’t happened yet, but Roman is packing my bags.

Tuesday, July 2o

Have I mentioned in this log that I am extremely sensitive to stimulants and sedatives? I noticed before Monday evening that the sleep drops the doctor gave me periodically made me walk funny, and there were a couple of times I leaned against the wardrobe while pacing the hall and fell asleep. I had been warned.

Because I had slept many naps on Monday, I was concerned that I’d have problems sleeping, so machismo got the best of me and I took a half dose of the sleeping medicine. The strongest dose I had taken up to then was a quarter and that fairly knocked me out. Machismo prevailed again when I had to pee at four on Tuesday morning, and instead of using the pappagallo that sat on the bedside table, I insisted on getting up and groping my way to the bathroom. Just after entering, my walk went funny, I fell, gashed my forehead, turned, tried to get up, fell backwards and broke two ribs.

The next few minutes were interesting. In terms familiar to those who follow my reports on the Parkinson’s Recovery Project, I went into Pause Mode. I became extremely focussed, there was no panic or energy wasted on anything unnecessary. There was a lot of blood from the head injury, and it didn’t bother me at all (a guy who has grown faint, crawling to the floor of the grange hall that was screening it, while watching a black and white film in which a character cuts himself). I adjusted my mode of crawling to take advantage of the bathmats that would follow me and provide traction. I called the two people whose phones might be on, had keys, and lived nearby. I reached Roman, he was on his way before he put down his phone. I leaned against the bed, breathed deeply, and relaxed. I was safe. It was only a matter of minutes. Then I noticed that my back really, really hurt.

Roman and the ambulance arrived together. My new pair of shorts of which I was so proud was cut off my body, I was put into a diaper, my head was wrapped, and I was strapped onto a hard plastic pallet to be carried every which way down three flights to the street. The ride to the hospital felt quicker than I expected. There, they washed, and stitched, and organized the lump of flesh thrown so suddenly into their care, they send me through an MRI, then up to a room in general medicine. I was given an IV of a painkiller, and I fell asleep. Previous worries about not sleeping were painted absurd.

When I woke, the kind and smiling face of my new doctor greeted me on one side, and that of an orange clad nurse on the other. My doctor’s smile is conjecture, as his face was covered with a mask, but his eyes attested. He has a beautiful smile, and as if to give me its benefit, he briefly pulled down his mask. It was sheer joy to see him. He explained that I’d had several stitches (numbers weren’t my thing at that moment) and that I’d broken my wrist which explained the back pain. I rotated my right hand, and considered the possibility wilder than anything I’d lately learned from Chinese medicine. He told me I’d be in for at least ten days, to rest, and not to worry. He probably said other stuff too, but after hearing ten days my capacity for mental absorption suddenly abandoned me. I blurted that I wanted to be given no anti-Parkinson’s drugs. He agreed. 

Then I was alone. I was an American in central Italy without his phone. Without his id card, health system card, any money, his hearing aides, any clothes, or even a memorized phone number of a friend. I wondered how all that would be resolved, but had not quite enough energy to worry for more than a minute at a time. I slept, was given IV’s, fed food, and washed. That evening Roman walked in with a smile, some clothes, all my official documents, and my phone. He held my hand and shook his head, said something in his Ukrainian-accented Italian, and gave me a tour of my regained identity. He looked absolutely angelic.

It wasn’t until Wednesday sometime that I realized the broken wrist was actually a rib, and a call from Katrin clarified that there were two. The healing: to lie flat on my back at all times for at least ten days.

I’m writing this on the tenth day. This evening I was given the honor of an arm chair. If all goes well tomorrow, I’ll be released on Saturday. If not, Monday. The diary will pick up again as soon as I have enough chair time to catch up. Writing or talking on my phone from bed is cruelty enough, using my notebook is impossible. Anyway, my body is mending, and I am able to write again.

And my friends have been amazing. So has the crowd of nurses. Andiamo avanti!

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.