Recovery – August III


Tuesday, August 17

Walked morning and afternoon. The Duomo porch this evening was occupied by a dozen or so children swooping back and forth like swallows, and flying close enough that I could feel the air move as they did. Rich and I decided it was more excitement than it was worth. Otherwise, a pleasant day marred only by my occasional emotional droopings when I lost present awareness and indulged in what was and what might be. We ate at Il Dialogo. The pizza was excellent, the panna cotta superb. I slept well enough, but was up by six again, with more energy than I have resources to burn.

Wednesday, August 18

Remained energetic through the morning, though the meeting with Chiara, the attorney helping with setting up a line of command in case of my disability, was (with my minimized hearing) tiring. Both ankles were a bit sore during the walk, but I still managed to complete six laps with two rests. Recovery seemed possible from that vantage, and one that goes on for weeks rather than months. But a longish meeting with an attorney left me exhausted, as I suspect it did her, as well. Napped for an hour, woke to a jumpy left foot (the usual of late) and a great desire to move (unfullfilable). Evening walk was a bit more stressed, mostly left ankle, but other body parts felt loose except when they were reacting to the left ankle pain. There was a bit of generalized discomfort while watching a movie which served to remind me that there has been none for quite some time. Went to bed about midnight, woke three or four times to pee using the papagallo, had no trouble returning to sleep.

Thursday, August 19

Woke feeling powerful, like I could go out and walk on my own, all systems go. Such was not the case, but I view the feeling as real nevertheless. The feeling of one-ness and integrated systems returned at several times during the morning walk, and later while watching people at the market and contemplating the remarkable power of friendship. Then, I returned home to find a dozen declarations of friendship from all over and in various formats. Heartwarming to be sure. I took a short nap before lunch, left foot jumping all over the place (as it has done for several days at this time). Longer nap after lunch, restful but woken by the cough, rather violently and with a sharp insistence that is new. I wrote Leonardo about that and a slightly sore right nipple. Also, left hearing improved to where I can hear when I scratch my ear – but no more.

Friday, August 20

Woke at six and transferred to the recliner, just because it was time to sleep on my back but I’d made of shambles of the bed. It was easier to change. The cough came and went, I don’t remember much more than that. We walked a bit earlier than usual, and I felt strong and like I could maintain a good through-step at the beginning. By the first rest after three lap, my left foot was beginning to tire, and by the end of the sixth lap I was exhausted. I don’t know how long I slept upon returning home, but I do know there were no jumpy feet, I just clunked out. Jana came for physiotherapy at 12:30, and I semi-slept through that as well. At the end she told me to rest, as if that were my job. I did, and again after lunch. Apart from that I’ve noticed since last night that I don’t have to move slowly except when on my feet, all other movement is a choice, and may even be in imitation of my father. The Parkinson’s feels largely gone, replaced by cough, hearing blockage, and weak legs and sore feet derived from other sources.

Saturday, August 21

Left ankle hurt badly straight out of bed. We changed the order of the walk to one lap, pause, two laps, pause, three laps. That seems to have taken the pressure off the ankle, and allowed the pain to walk out. Came home, snoozed for a bit, ate lunch, and napped for three hours, coughing intermittently. Each fit of coughing is (and has been) followed by shaking in the right arm (occasionally both arms), but not the Parkinson’s tremor which is of a specific frequency. It is a shake not a tremor and lasts more or less as long as the cough that caused it.

I’m not sure about yesterday’s observation about slow movement; it applies to some movement but not all. In fact, may apply to a specific movement one day but not the next. It’s worth watching. Hearing is a bit better, cough is not, but as of mid-afternoon yesterday’s fever is gone. Magnesium citrate seems to take care of RLS (or post walk jumpy feet, whichever it is). Evening walk same as morning, except we were plagued by wasps.

Sunday, August 22

Five laps straight in the morning, pause, and an attempt at a sixth. The brain got tired after five. Not much pain, but lost the ability to be smooth. No fever in the morning. Slept an hour, lunch, slept another two hours. Cough continues especially when sitting or standing. Hearing remains nil. The tremor is back, not just the shake after coughing, but a frequent right arm tremor, day and night. Hitched my arms behind my head during a recliner nap and the tremor went went away for the rest of the day (and night, I think). Temperature was 38.2 as of about 18:00, Leonardo said it was too high for a walk, but we’d already taken one by the time he wrote back.

Monday, August 23

Temperature 37.3 in morning Roman interpreted Leonardo’s walk ban as applying to all temperatures above 37, so no walk was taken. Because of the possibility of covid, Roman spent the night, unbidden (but appreciated). A lot of napping and semi-napping points to my need of more movement. So much sleep has rendered typing (for example) halting and clunky. I just had a coughing fit that ended in throwing up – is was at least clear and singular, but one more thing for Roman to clean up. And two hours after lunch and my nose still runs, a phenomenon unique to meals at home. Afternoon fever 38.2. Leonardo suggests staying in lest I run into a temperature check. He gave me a covid test (negative) and prescribed antibiotics. I hope they help. He also set up a private appointment with an ENT who speaks English for Saturday morning. In the meantime I’ve never felt less healthy in my life, which I suppose declares me pretty healthy, overall.

Recovery – August 24


There is no need to burden you with every ripple and current of these endless days, so this is more of a newsletter. If you want the diary format, that’s here, too.

Around August 7, I developed a cough that is provoked by any sudden intake of breath, like speaking for annoying example. On August 10 I woke up with normal hearing in my left ear (normal being less than perfect but workable) and within a few minutes all the hearing left that ear. Because of the timing (that it seemed to have to do with inserting my hearing aide) II thought it was earwax, but when the doctor did what seemed to me like a very half-hearted attempt at cleaning them and with no improvement, he concluded it was blocked eustachian tubes and began treatment for that. In the meantime, the cough got worse, and occasional fevers set in, so he tested me for Covid. The results were negative, so he put me on a short course of antibiotics and threw in a few dietary restrictions – lots of carbs, reduced intake of fluids – for good measure. I’m feeling a bit better today, but I still can’t really talk and the hearing is unchanged.

What has been most annoying through all this is that doctor and caregiver don’t seem to understand that wearing my aides is not going to make a difference. There is a little fanfare that plays when the aides turn on. I can hear the right one, but nothing at all for the left.

“I could hear it clear over here!” shouted my heroic caregiver Roman. “How come you can’t?”

Because the hearing in that ear is gone.

“The aide needs adjusting to your new levels, that’s all!”

First of all, why are there new levels to begin with? Second, the new levels are at zero, there’s no room for adjustment.

All this in Roman’s Ukrainian influenced Italian.

My doctor who speaks good English got me an appointment with a private specialist for Saturday, one who also speaks English, so I hope to break the language barrier then. I’m still not convinced it isn’t wax, but try to explain to the pharmacist why you want a removal kit with hydrogen peroxide and see how far you get. Worse, try to explain what you want to your Ukrainian caregiver who asks the pharmacist. It’s like a game of telephone.

A similar thing happened 18 years ago. I went to doctors and specialists, who all told me it was a freak but permanent hearing loss. So after a few weeks I went to Mark Seem, my acupuncturist is New York, he treated the gall bladder channel, and the hearing was restored by the time I left his office. An acupuncturist here tried the same yesterday (he didn’t feel quite as dynamic or enthused as Mark) with no result.

Anyway, Recovery has been on autopilot. I’ve been able to do almost none of the inner work. The cough wears me out, and the only position I can escape it in is flat out on a recliner, in which I instantly fall asleep. Symptoms are all over the place. Sometimes I can barely walk, other times (like today so far) I can walk pretty well. The tremor comes and goes throughout the day and night. I feel like I want to move more, but when I try to, nothing happens. I have to be careful not to slip into I just want to die mode.

Plus, my phone now shows date information in Chinese, the emergency bracelet I signed up for turns out to be a clunky and unwearable necklace, and Netflix won’t find movies I know are on it when I search (some I’ve seen listed minutes before). Very Kafkaesque.

Janice already said it with her comment about an emotional jolt can scramble the program, and that feels where things are at. Too much going on to untangle. Just a no-progress report.

Recovery – August II

Tuesday, August 10

Today was air conditioner day, so we were up at six so that Roman could make me and the apartment presentable by the time the crew arrived at 08:30. There had been quite a bit of confusion as to where the unit could be installed, and it was finally back to the first conclusion; the bedroom in the corner to the right of my bed. I was not happy with this. It meant having cold air blow on me while sleeping, and given the bedroom is at the extreme western end of the apartment, nothing else would ever be cool. Roman and I discussed this last night, and came up with what seemed like a reasonable alternative, which he proposed to the crew as soon as they arrived. There ensued a lot of shouting. Roman popped into the salotto where I was waiting to update me; it would mean a longer run of tubing.

“I’ll pay for it!”

“And instead of one side of the hall, they’ll install it over the bathroom door at the end of the all, so they can run the condensate tube into the shower.”

“At least it’s not in my bedroom.”

The shouting calmed, and we went for our morning walk.

Later, when I checked my phone, Janice at Parkinson’s Recovery had answered my weekly report, one I thought was rather banal.

“This is profound,” she said, and went on to describe recovery not as something I was still going through but as something I’d done. I was feeling strong and in balance, and ready to believe it; we had walked 1.4 kilometers today. I became aware that each step has its origins in the thigh and buttocks, and that awareness helped to made the gait smoother. Recovery made sense.

But my feet still have a tendency to swell. When I mentioned this to my doctor, Leonardo, this afternoon, he suggested compression socks. The calves had become weak in the hospital and their activity is essential in drawing blood back up from the feet. He also suggested trying a medication mornings to increase urine production.

Roman understood about the socks but expressed his disappointment that he would have to suspend leg massages.

Wednesday, August 11

While putting my hearing aids in this morning, I seem to have pushed a plug of earwax deep into the left ear canal, and am now temporarily deaf. I wrote Leonardo. He told us what ear drops to buy, and promised an appointment on Friday for wax removal. I had already developed a cough that bothers when I try to speak, so now I am cut off from speech on both ends. Enforced silence. Appointments and phone calls were canceled, friends who plan to visit have been notified. 

I was able to walk almost as well as yesterday, but more effort was involved. I took a urinary production pill with breakfast, as instructed. The new air conditioner works well.

Thursday, August 12

When Leonardo suggested the pee pill be taken in the morning, it was so that it would have lost its potency by evening, so as not to add to how many times I have to… well, this deserves some explanation. I keep telling Roman that he doesn’t need to stay overnight anymore, but he insists that he does.

“Call me every time you need to pee. I don’t want to find you on the floor because you overreached for the papagallo. Each time.” That was yesterday evening, and I swore I would. But the pill didn’t lose its potency, as hoped. I called him a dozen times during the night, or at least that’s what it seemed like. This morning we were both of us ragged. 

“No more pill,” Roman said this morning. I agreed.

My morning walk was not nearly as fluid or strong, and we stepped back in distance as well. I slept all afternoon. My hearing had not improved. The PD shuffle was strong. I reported to Janice.

“Things like fluidity when walking will be affected by things like sleep and emotional state for some time to come. You don’t have a lot of reserves. You have the ability to be healthy now, but it will take time before you can smoothly get past rough spots such as no sleep.” Or like not being able to hear or speak, I may conjecture to add.

Friday, August 13

Walking this morning was extremely disappointing. Every attempt at keeping stride was met with left ankle pain. The pain itself is not unusual, but that it showed up on the first lap, was. Then we wheeled over to Leonardo where he flushed out my ears. No difference. 

“It’s not wax,” he said, half sighing. 

“Eustachian tubes?”

“Yes, it’s probably related to your cough and runny nose. There are sprays to help with this.”

An hour later, Jana my physiotherapist of the hour came on a house call. She worked on freeing my muscles. 

“You have your entire body protecting your ankle pain by turning in. We’ve got to open it up again.”

My friend Richard arrived from New York via Nice at almost midnight. He has worked as a caregiver so will be able to give Roman the weekend off. That makes us both very happy. I’m not sure how happy it makes Rich.

Walking was hard, due mostly to pain in the left ankle. Movement is generally slow, and the gradually increasing isolation from now not being able to hear or speak is depressing. Typing remains okay, but slow. But I am sleeping like a baby!

Saturday, August 14

Ears continue to be blocked, hearing is nil, the cough welcomes every word I even attempt to speak. Walking around the apartment is a joke, movement is slow. The right arm tremor is back after several months’ absence. Morning walk at the Duomo was difficult; any regularity of stride was soon met with left ankle pain.

I slept a lot in the recliner which provided relief from the cough, and the usual products of oversleep never made themselves evident. Rich and I lunched at a pizzeria on Via Signorelli. The food was good, but (for me) a challenge to eat. I spent the day having to pee every fifteen minutes. Typing is middling. All in all, this is the most discouraging and uncomfortable day I have had in a long time. I feel bad being a burden on Richard’s Orvieto sojourn. He says he does’t mind. 

Then, the evening walk, which because of extreme heat was delayed until 10 pm, encountered mobs of people on the Duomo steps who were all out for the same reason, and was moved to Piazza Febe in front of San Francesco. It’s a dark, circular, freshly paved little piazza, perfect for walking at night. We did five laps without stopping and no ankle pain until the very end. Again, I slept like a baby.

Sunday, August 15 – Ferragosto

For the first time, I wasn’t looking forward to my morning walk. The pleasantness of last night’s walk was overshadowed by yesterday’s overall coloring of defeat.

We beat the really bad heat, but it was still hot. I was able to put in four laps before my ankle gave out, but the reason for the ankle was a sudden influx of people swarming the porch, my concentration went nuts and I stepped wrong. Nothing injurious, just uncomfortable.

The cough is looser today, the hearing a wee bit better, and except for this morning, I feel like moving (ill-advised in this weather, but a positive sign). 

I hit bottom again during the afternoon. The cough would only be still if I were flat out on the recliner. It reminded me too much of hospital. 

Rich and I went to Bottega Vera for a dinner platter, then we walked the Duomo, but my left ankle kept giving away to pain, especially, it seems when I get in “stride” all movements connected, no shuffling. “Hey, I can do this! Ouch!!!” Pretty much like that. I expect to sleep well. (I did.)

Monday, August 16

Roman was back for the morning session. Rich has been a great help, but it was also good to be in familiar hands. We did the morning walk only with the support of Roman’s arm, resting briefly after each lap. The stride is much easier to maintain without pushing a wheelchair, but also more tiring as different muscles are being used.

From there, the day was an emotional roller coaster.

Roman fixed Rich and I a wonderful Ukrainian meal that I could barely eat, due in part to a compromised appetite (heat, blahs) and in part to not wanting to have to blow my nose through the eating of it, as I do with every meal I have at home. Eating out with a drip free nose has already spoiled me. I kind of thought the air conditioning would help, but it hasn’t.

I took an unneeded nap after lunch, and woke soon to wait for Rich to come back and wheel me to the nearby playground which is a perfect spot for an afternoon walk. Waiting is not something that I can tolerate much of lately, though I have plenty of opportunity to practice. I am quickly approaching the sick of the sickroom stage. 

The other oddity… well for four days after hospital I could not produce a bowel movement to save my life – typical of when I change residence, even just a short distance like that one was. Then once started, it has been five to seven robust deposits a day. That caused quite an excitement among my badante. However, the trend has turned into a new normal. Almost every urge to pee is accompanied by an equal urge to sh*t. That’s a good thing, I suppose, but it is also isolating, and when left alone it can be a bit scary. 

Evening walk at Duomo was also only with arm support, and in total I did nearly two kilometers today. Parkinson’s symptoms have gone back into hiding except for whatever effect they may have on walking and periodic slowness. Went to bed a tad too early, and peed my way through the night, though I could recall drinking very little and sweating quite a lot. I gave in at six and got up on my own to wait – for Roman.

Recovery – August I

Last Saturday evening, fresh out of hospital, Roman wheeled me to the Duomo for our first walk. The north terrace has an access ramp, and is shaded most of the day, five full laps equals a half kilometer, so it’s made to order for recovering legs and feet after twelve days of nothing. I was shocked at how difficult walking again was at first, I’m still shocked. But walking the Duomo has become our twice-daily routine, and we are up to a full kilometer a day. Is walking easier? Maybe a little, but the quality of the walk has improved – most of the time.

This last Friday, someone asked the dread question “How are you?” Dreaded because there is no easy answer. Parkinson’s Recovery seemed to be going ahead nicely, then I fell and a host of complaints and symptoms arrived with the fall. Then there was recovery from the hospital and another lot of symptoms and confusion. But day before yesterday I could honestly report that Parkinson’s symptoms were all at a very low ebb, and that the only exception to that were sore feet and weak calves which may not have much of anything to do with Parkinson’s anyway. Then last night I slept wrong on my right side, and woke with a swollen back and amazingly painful reaction on my right neck and upper right shoulder. The pain persists, and all day it has been affecting my energy, appetite, and mood. It is a setback on top of a setback on top of a setback. And discouraging because on the heels of a little clarity comes another stream of confusion.

Today, the neck and shoulder pain has abated and the swelling gone down, but last evening, and this morning my feet – mostly the left one which had surgery a year ago – hurt while walking. In each case I could, after a bit of warming up, achieve a normal, long, and shuffle-free stride, but after a few meters the ankles give out and begin to hurt. This may just be compounded weakness of the calves; they atrophied in the hospital to a rather astonishing degree and were already weak from lack of training after last year’s operation. But the residual back pain, plus a good stride subverted by foot pain, took the steam out of me.

“You look like you’re working yourself through a terrible meal,” Roman observed. 

“I just want to be home and asleep in the new recliner,” I answered sourly.

Roman allows what I need, but only gives me as much slack as is absolutely necessary. 

On the up side of things, the Ukrainian group that Roman brings with him has been a marvel of lent resources. It began just before the fall when Roman brought home a wheelchair. We took it out on a spin and for the first time in over a year I saw Orvieto without the intervention of an automobile. Then I had the poor grace to fall and stared at a wall for almost two weeks. When I returned, talk turned to finding a sick-room potty. Two days later Roman brought one home, also on loan. The next goal was a motorized recliner. On Friday, Maria and Roman came in very excited. They had mentioned it to a friend whose mother she had cared for for years, and they immediately offered one on loan.

“We got you a recliner, and Slavic is here to help move it. Go into your bedroom and don’t come out until we call you.”

“Right now?”

“Right now.”

But all that sidesteps the central issue; that the Parkinson’s Recovery seems to be working, but leaves me with having to deal with unwalkable feet. My doctor comes over tomorrow to look at feet, and Giaccomo, who trains people with walking problems makes another call on Wednesday. My job is to see this all as steps in a process, and to try to let go of the notion of setbacks. 

In the meantime, I’ve met some extraordinarily generous and wonderful people.

Recovery – July IV

Wednesday, July 21

I have no notes of my first full day in a hospital bed. I’m sure there were terrors about having to be there for at least ten more days, but those blended with the rest. I do remember realizing in the morning that I was without any of my props; documents, cellphone, clothes, not even a memorized number of a friend. Roman came in the evening like a saving angel with all that I needed. He was the first of many angels.

I learned something about prayer during my stay. The lessons took many forms, and what I mean by prayer would not necessarily qualify to someone who is religious (I prayed to my own deities in my own words), but something new was lodged into my experience of life that looks a lot like trust or surrender. It’s not easy to hold on to but it feels to be a very good thing.

Thursday, July 22

Early in the day, I began to have a distinct out of body experience. It was preceded by a “flight” over a gigantic pool that was bordered by beautiful rock formations and plants. The experience was crystal clear, and what I was flying over evolved and developed as I grew nearer, but unlike in a dream, it never altered is overall shape or character. My flight ended over a small area to one side that was like a terrace, and I was drawn to rest there. There was a pad of white light that I rested on, then my “body” floated above this flower-like pad of white light, always drifting down but never really moving. It all began just after I woke, and persisted through the morning’s prods and pokes, the doctors’ mass visit (there were four doctors that day) and through the afternoon and evening. After noon it was a bit less consistently clear, but remained there to tune into when I needed it. It was so wonderful that it totally obliterated any worries, discomforts or concerns. Whenever anyone asked how I was, my answer was “right now I feel wonderful”. Most were surprised by this response. I was, myself.

Friday, July 23

The white light phenomenon continued. On this day it was preceded by a flight over a beautiful city such as I have never seen. It stretched like an enormous Italian village over hills and through green valleys. The rooflines echoed domes and the hulls of ships, the decoration was rich and varied, the colors blended with the natural colors around it. Then after quite a long time flying over this landscape, I again found the flower-like pad of white light where I floated on my back, always with the sensation of sliding upwards. This lasted most of the day and into the night. It felt welcoming and healing, and I was convinced that the broken ribs were being given an extra shot at a quicker than normal recovery.

Saturday, July 24

Early in the day the white light pad made itself available again, but I didn’t have the energy to allow myself to enter, or had forgotten how, I’m not sure which. But I had a very real X-ray, and word filtered back from somewhere that the healing was remarkably strong. I smiled a secret smile.

Sunday, July 25 – Thursday, July 29

The voice notes I made for this period are incomprehensible, but there were themes and stand-out events that I remember.

Imagine Movement

An integral part of Recovery is to imagine how it feels to move/walk well; a way of retraining the brain to send the right signals in the right way. The hospital stay afforded a great atmosphere for this training, and I was surprised at how exuberant and filled with color and light the imaginings were. Now that I’m home and walking again (after a fashion), I’m curious to know how they play out. I have also been having more difficulty imagining being home.

Night Terrors

I asked for a sleep aid sometime this week and was given a full dose of something wicked. Understand that I had to remain on my back 24/7, so the first thing the drug made me want to do is to turn on my side, and in the rather paranoid state the drugs induced, every other impulse it inspired seemed deliberately subversive, like someone had designed this medication to destroy your life. I got through the first night without screaming fits, so I requested a half dose the next night. The drug started in the same way, but quickly progressed to scenes that could have come from the movie Clockwork Orange. The isolation was profound. The dream ended with me in a building, white and empty, in a prison that resembled my fenced-in bed. There was an unseen presence pushing me to accept a soulless existence that was somehow being promulgated by corporate culture. I screamed for help, but was frightened by my utter aloneness. Desperate to prevail, I turned to begging forgiveness from my Mother; who was more than my physical mother, but also the Earth Mother and Feminine Principle. The persistent pushing stopped and left me in an exhausted heap. It was a long time before I awoke.

I declined the sedative from then on, but they lingered in my system long enough to cause another psycho-terror nightmare two days on. I don’t remember the details, but it left me wondering if I’d become paranoid schizophrenic for several hours after I woke. No fun.

Day of Doubt

I spent one day doubting every decision I’ve made, or so it seemed. 

Day of Gratitude

There was also a day of revelation, when every detail of my life, pleasant or no, fit perfectly into a puzzle of wonderful complexity.

Recovery — July III


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 86th 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. 

Recovery – July 30

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.