Category: Recovery

Tuesday, December 7

Early this morning, I received a response from Janice to yesterday’s diary post about the weirdness of the coat, suggesting that I can be operating on the parasympathetic continuum, even though I can hardly walk and symptoms slip around all the time. When I ask my Friend if I am on pause, she answers with a very strong NO, and has done so for months, even when I can barely function. I’ve assumed that meant my body is in repair mode, or rebuilding after a long and calamitous war, so is not firing on all cylinders (Dad was a mechanic).

But there was still a hole there that wants to be filled. Knowing that I can be on the parasympathetic continuum while experiencing the effects of insufficient dopamine distribution somehow fills that hole and is significant to my repair process. I believe that has been my dominant state for about a month. My further speculation leads me to the possibility that after the hospital (August, September, October) my daily walk involved splinting atrophied leg muscles against strong ones until that became untenable and I experienced a crash. 

She responded “here’s the deal – did you read about how the brain, when it starts using dopamine for movement, might suddenly ‘run out’ ? and suddenly, you just crumple. it’s not that the rigidity returns, it’s that you’ve just run out of neurotransmitter, even though you’re still in parasympathetic mode.” She goes on: “if your muscle response time is slower, your ability to balance will be slower. if your muscles are getting limp, their response time might be affected. however, there should be some times during the day when you have a spurt of dopamine-driven movement, and during these times your balance should be just fine.”
Yeah, limp. Limpness is a recovery symptom I’ve experienced before, in fact I’ve thought my legs to be extremely limp, even super limp. I knew not of what I spoke! This, me, today, this is limp! Limp to the twelfth power. Limp beyond all imagining. I am encouraged but I also hope that I move along to the next thing, stat!

Wednesday, December 8

Last night I turned over in bed many times without the usual screaming and cursing. This morning movement was fairly standard – that is, restricted but not terribly uncomfortable – but by the time we left the house I was essentially a cripple. I even chose to wear a down jacket instead of the peacoat, apparently to no avail. We went to an Alexander session which showed me in bright relief what a web of tension and pain my body has become. It also showed me a way out. We worked hard, and the walk from studio to Roy’s car was a tiny bit less painful than the way in. But both ankles now hurt, even a little bit at rest, though I can’t credit the session on either.

During the morning routine I was treated to a dopamine moment manifest as a feeling of deep well-being and safety.

This is such a strange journey!

Thursday, December 9

Physiotherapists have been telling me to both straighten and bend my knees while walking for years. This morning the penny finally dropped. This afternoon I put in six garage laps before ankles began to hurt, so I may also have discovered the source of pain. I had another Dopamine Moment this morning. There was also hail. There was intense pins and needles in arms and hands.

Friday, December 10

Pins and needles continued from about 11:30. Tasks gobbled up the morning so we didn’t get to walk. I’m getting too adventurous in rolling over in bed, doing what feels natural but I get stuck in positions too awkward to extract myself without considerable vocalization. I think I scared Yuri this morning. I know this because of the way he crept in, like he might find a madman. Understandable.

Around four in the afternoon, my legs got jumpy so I decided to pace the hall using my new insights on knee flexing – when to bend and when to straighten. Walking was hard. Then I called a friend, and talking was hard. Fortunately for my self-esteem, typing is easier, relative to most everything else, which is something.

I guess I am having a “bad day” even though in most situations I don’t believe in bad days. We shall see if I can exercise and if I can, how much it lifts me.

We just came back from walking where we did seven garage laps, more or less in form, and with minimal pain. Things are looking up.

At some point during the afternoon, I seemed to have had a glimpse of what it would be like back on the para/sympathetic continuum; didn’t make it there but there were signs of its approach.

Saturday, December 11

It seems that the right arm has relaxed and the tremor is gone except when there is physical stress in some other part of the body. This has been the case since Wednesday, at least, but I think a bit longer. The right arm has put on a good show before for a few days, so I’ve become averse to recording its fluctuations (I’m foolish enough as it is) but this is acting like the real thing. We shall see. Pins and needles in hands and arms continues to be intense. Walking the garage this morning was physically impossible, Friend says that’s a darkest before dawn model, but gave no idea as to timing or degree. Typing is not too bad; fingers are more lazy than inept.

Candace did yin tui na on my right shoulder this afternoon. When she first put her hands in place, they felt as heavy as the lead blanket dentists used to use for x-rays, I asked her to lighten, but she still didn’t feel any of the twitches or mini-releases associated with the treatment. 

The trauma captured there was, I believe, from when I was thrown into a pool before I knew how to swim when I was eight or nine years old, so my body’s first reaction is to feel out of breath and like I am flailing and panicky. When that relaxed after a few minutes, Candace immediately reported that the mini-releases were starting. 

The treatment lasted for an hour, and I drifted asleep. When I woke on my own, the body responded as it always does when I wake from a nap on my own (as opposed to someone or alarm being involved) my arms both shook (distinct from the tremor) then my toes pointed and both legs became super rigid for maybe twenty seconds. This never happens when someone or something wakes me. That is so strange that I have to repeat it. 

As a result of the treatment the shoulder feels significantly freer and more open. Because I had not moved beyond the physical threat and emotional discomfort stage previously, I’d avoided having the shoulder held again, but it seemed time to advance, and I’m glad we did.

Sunday, December 12

There was no significant sleep until 05:00, so I asked Yuri to let me be and I slept until 11:00. The reasons for not sleeping were silly, like not being able to fully clear my right nostril which would then make a noise that only I could hear but sounded like a voice, and I would jolt awake in such a way as to assure that I would not sleep again for at least another twenty minutes. As a consequence I paced a lot, mostly in pretty good form, and today walking (as yet untested beyond the apartment) seems to have improved. 

Yesterday, someone observed that as of a month or so ago I seemed to be doing so well. “Then it all crashed,” I responded. Today, I have a slightly different perspective. If I have a bad cold that hangs on long enough to make me stir crazy, and I venture out before my health is solid again, I am in danger of provoking a relapse. That is what seems to have happened. I got caught up in a numbers game; walking one, then two, then almost three kilometers a day on shaky legs with uncontrolled posture, pained ankles, and always reaching for more. Then one day about a month ago the legs reached their limit and called a halt. I’m slowly building back with a more aware attitude of posture and form, but when the impatience that caused my overdoing revisits, I see only the backward slide and push responsibility for it onto a mysterious unknown operating beyond my influence.

If that is the case, rest is effective. I did eight garage laps this evening without undue stress or pain.

Monday, December 13

As often happens in the morning, I could only make two laps in the garage before I collapsed, then regardless of how light the exercise, I slept like an overstressed child. Then again, I may have fallen prey to my habit of reaching too far, too fast with yesterday evening’s walk. It may be wise to assume a ceiling of five garage laps until that becomes an easy norm.

I spent the afternoon writing letters and submitting plays. That involved a lot of typing. And typing today has been as if I were in the back seat of an old Studebaker with no suspension on a washed out dirt road. But I lost myself in the task at hand, so there was a minimum of swearing.

True to my new philosophy, I called halt to the evening stroll after five garage laps. The first three laps were surprisingly quiet. I still feel like I could go to bed and sleep.

Tuesday, November 30

I took a small sedative around midnight and it did indeed put me to sleep, and in fact it is still working well after noon. I’m grateful for the sleep, but am less sure about the tradeoff.

No walk this morning. Instead we went to Giancarlo’s where he fixed an apple strudel so we could follow a tradition forcefully abandoned at least two years ago. He’s a wonderful baker and a kind man.

I never got over the sedative today, it made me woozy and wobbly and terribly insecure. So, Yuri picked up a homeopathic sleep aid that I’ve used before with only good effect, and I was able to begin taking it at dinner. No walk tonight, too unsteady plus my ankles need rest.

Wednesday, December 1

The second session of Alexander technique was today. Monika methodically opened up areas of my body that were tight (almost everywhere) but habit pulled most muscle groups back into place minutes later. Still, it was instructive to see that I could relax on command.

Then yin tui na this afternoon on the right shoulder. It was hot to the touch immediately and caused me to feel suffocated. After several minutes I was aware of being thrown into a pool when I was about ten, and before I knew how to swim. I requested that Candace ask me aloud if I felt that my life was in immanent danger. I answered with force, YES. That was a first. 

It was a very strange day all in all. Last night I was able to pace the hall – not easily but possible. I woke up at eight feeling like I’d been encased in a block of concrete, even putting in my hearing aides seemed impossible. By the evening walk I was hardly able to move, yet a week ago I had five minutes of complete recovery. I know, that’s the weirdness of recovery, but today I found it hard not to be discouraged.

Thursday, December 2

I didn’t really sleep until 04:00, but when I did it was sound and pleasant. I woke shortly before eight, and we did the morning routine, but when it came to a short rest after leg massage, I asked Yuri to let me be and slept until 10:30. I semi-slept during the activities of the half hour after that before I gratefully collapsed into the recliner for a nap. But a nap was not to be. The right leg became restless all the way up to the thigh, and the right ankle hurt even at rest. We skipped walking, it just seemed too hard.

After lunch I did nap, so deeply that 23 minutes seemed like hours. Then I meditated, and napped again for two 23 minute chunks. 

It is raining, I’ve been weeks without a shower, so we scratched the evening walk in deference to hygene, and I feel two kilos lighter.

Friday, December 3

After sleeping for a bit more than three hours last night, I woke to find my body in what is an essentially impossible position to get into while awake. I have no memory of the effort, but it was like a miracle, as for the past several months or more, I have been limited to sleeping on my side at the edges of the bed. What is more, I was delightfully comfortable. Since sleep has become a constantly shifting challenge, I’ve been envious of the bedding in movies and how easily the characters find ease. Well, look out Meryl, Russell, and Robert, I’m determined to re-enter your league.

Getting out of bed after first sleep was five minutes to a sitting position, and ten more to stand (I timed it, I actually did). But once I got through that, I was able stand, walk, and do stretches; not gracefully mind you, but at least it was recognizably human – or at least I think it was.

After an hour, I entered second sleep for five hours straight with the aid of homeopathic drops. It could be chance, but they seem to help.

The morning and early afternoon passed. Candace did yin tui na on my ankle at 15:00, and despite our having spent the whole time chatting, it seems, so far, to have reduced the pain. Friend told me this morning to rest today. I’ve taken that advice quite seriously.

Saturday, December 4

Sleep patterns persist. I tried walking in the garage both morning and evening, and was barely able. Indeed, even walking during sleep intermission early this morning was without ease. The ankle pain is reduced, however, so at least that part of the plan is working.

I want to change format of these daily reports, to allow them to be less about sleep and walking schedules, more about the colors of being Orvieto’s newest (hopefully temporary) invalid, but the effort typing involves keeps me from it. However, there is progress just in my wanting to create in a more artful manner.

I just read an article on the website Out-Thinking Parkinson’s that includes a long list of Parkinsonian non-motor symptoms, and while some were familiar from several months ago, none currently apply. It is good to be reminded, especially during times of seeming regression, that progress has been made and that rebuilding takes its own time. 

Sunday, December 5

First sleep was deep and satisfying for three hours starting at about midnight. I didn’t enter second sleep until 05:30 or later, then slept well until Yuri woke me at 09:15. I stumbled through the morning routine half asleep. When it was over around 10:45, I begged off walking and slept another hour and a half in the recliner. Then Yuri woke me for lunch, but even though I felt like sleeping again after, restless legs had kicked in by then, so I gave up. Although I wouldn’t object to sleeping in more congruent stretches of time, I’m grateful that the sleep I get is good and the total time spent asleep is sufficient, even if oddly distributed.

The afternoon passed pleasantly and groggily.

The evening walk was at the garage, three sloppy laps. Moving around at home even sloppier. Watched television, went to bed with hope and terror.

Monday, December 6

During a two-hour gap in sleep early this morning, I did some simple exercises for the appendages and found them easy and fun, if not elegantly executed. Right after rising, movement was not bad. An hour later, I found myself clumping. The walk in the garage was a disaster, as was all movement through lunch. I rested, and movement evened out, some. Symptoms change hourly with what seems to be no cumulative effect.

Okay, I’m gonna get weird (as if that’s news). For several years I’ve been describing PD as a rotten, old jacket that needs to be taken off and thrown away – I just don’t know how, for whatever reason. 

Well, I’m preparing for this evening’s walk. I go from the studio to the bedroom. My gait is smooth, even if slow, and my body feels loose (relatively speaking). Yuri changes me into outdoor clothes (see “a character from Downton Abbey” of several weeks ago) and that goes smoothly, as well. I take the walker to the front door, my gait provokes optimism, I feel solid, even confident. I spin the walker 180 degrees to position it for our return; not a problem. Yuri takes my peacoat from the wardrobe. I extend my arms and pivot. The coat slides into place, my posture crumbles, my balance falls into a pit, my legs feel heavy as lead, my voice cracks – a high school memory of a scene from ancient Greek tragedy, Jason and the fiery cloak, pops into mind; very unpleasant pins and needles cross my arms and chest.

I told you it would be weird.

The recovery from the coat part isn’t as defined. The coat comes off, I shuffle to the bedroom where I am changed into indoor attire. I nearly topple when Yuri tucks my shirt. I shuffle with the walker back to the studio and by the time I reach my desk a degree of stability has returned. An hour later I am barely able to get to the kitchen for supper.

So, what is this coat and how do I remove it? Answer in comments!

Thursday, November 25

I slept poorly, so after breakfast I went back to bed for a couple of hours rather than walking. Besides, both ankles were very sore, and it seemed appropriate to let them rest.

The afternoon passed without note.

This evening I had an appointment with a neurologist to certify that there is Parkinson’s. That makes me eligible for a subsidy to help pay for the care givers. I imagined – better to say feared – an older doctor who was going to argue with me when I told him I don’t do the drugs. My good neighbor Ida gave Natalia and me a ride to the hospital, where we waited ninety minutes for a 5:40 appointment. Ida and I exchanged grouses about how careless were Italians, especially medical Italians, about time. We were finally called in by a youngish woman with a magnificent cascade of curly brown hair who apologized profoundly for the lateness – a colleague of hers was stuck with an emergency and she had to squeeze in three of his patients at the last minute.

She asked standard questions, I gave fairly non-standard answers. She laughed at my attempts at humor and dismissed my concerns about the unconventional approach I have taken.

“You don’t have to take the drugs, but yes you must continue physical therapy!”

She’s talking about the favorite hours of my week, I don’t think that will be a problem.

While we were waiting, Ida tried several times to call her husband to give him an estimated return, but there was no connection. “We have become completely dependent on our devices,” she said. I thought about my evenings watching video, and how glum these past six months would have been without streaming.

We arrived home at ten to eight, Natalia fixed my supper, and I soon settled in for an introductory hour of music before I chose tonight’s movie. A music video about the subjunctive case in Italian presented itself (one of my faves) so I enjoyed that and went on to the remarkable world of play-on-demand to choose how to spend the hours before bed.

“Ooops! Something went wrong, try again later.” That, or something like it, showed up on all channels and on my phone, too. I went to bed early, figuring that if I woke up after an hour or two, maybe the problem would have resolved. It is now nearly midnight and such is still my hope. I’m victim to a certain desperation – that of an addict deprived of his fix – as the empty hours roll out in front of me. I keep having to check the impulse of going to a local news site to find out when service will be restored. Ida spoke the truth.

Friday, November 26

I slept twelve hours last night, not without interruption, but I always returned to sleep within a few minutes of reorganizing limbs, bladder, or bedding. And Yuri had to work extra hard to get me to stay awake after I first opened my eyes to daylight. Then after the usual morning routine, I skipped the walk in deference to compromised ankles. We rolled out just before the rain turned heavy, did banking and got coffee. Then believe it or not, I took a nap before lunch. And after lunch.

At two, Candace did yin tui nah, first on my left ankle then on my right shoulder. (Yin tui nah is placing hands on an old injury without intention to heal. I’m still trying to understand it myself, so I’ll leave it there.) The ankle treatment made me squirm, treatment on the shoulder created an unrequited urge to howl from fear.

Since my five minutes of perfect health night before last, I’m much less anxious, so even though I can’t pin my occasional poor sleep on anxiety, maybe there is a connection. I can also visualize much more vividly, and visualization is a key component of PD recovery practice. But walking around the apartment has been various in the extreme. Setting out from a seated position is super easy one minute and almost impossible a moment later. The ankle is now more painful walking, and the shoulder hurts while at rest, which it never has before.

It was a remarkable session with Katrin, my physiotherapist, like being in the womb (and I was happy there!)

Saturday, November 27

A wonderful morning! Deferring once again to the ankles, there was no walk (for me) but Yuri, blessings on his head, first pushed me to coffee, then to market. But there was no market in Piazza del Popolo (there was instead a load-out at the end of a week of filming) it had been moved down to Piazza Cahen – not a long walk but uphill all the way back. Yuri was willing, so we took the trip down to replenish a supply of naturally dried apricots. The real fun (and my secret motive for insisting that I couldn’t wait until Thursday’s market for the cots) began the minute we turned around toward Cahen when Giorgio told us where the market was hiding, and continued with lovely encounters with Chou Chou, Paula, Patrizia, Maria, Giancarlo, Fabrizio, Bruce, Federico, and probably a few others who escape my memory. All together they were the best therapy I could have asked for.

Then lunch, naps, more naps, hall pacing with occasional use of an ankle-friendly gait I discovered, sort of a corrupted version of Wednesday morning’s symptom-free episode.

Instead of walking this evening, Yuri was kind enough to wheel me around town during a light rain. The Christmas fair is open, and those holiday lights that are up, are on. That, the rain, and the people make for a lovely wintery scene, but I miss the traditional – and still in force only three or four years ago – beginning of Christmas on December 8^th. Subconsciously or not, perhaps we’re rushing ahead of the virus, getting our gatherings in before whatever the variant-of-choice takes over. It that’s the case, then chalk up another reason for this tragic saga to end; albeit a small one, but it would buoy my spirits to see that bit of traditional Italianità restored.

Sunday, November 28

Yesterday morning I ordered a cappuccino chiaro (a half shot of espresso). When it came, it tasted stronger than usual. Mistakes may have been made or not, but I am sensitive to stimulants and depressants, and last night I slept hardly at all. I couldn’t find a comfortable position, or I would find one then dismantle it before I could fall asleep. That syndrome dates back to spring of 2019, but last night won prizes for severity. So, this morning I asked Yuri to begin with massage and if I fell asleep to leave me be. I fell asleep, but when I tried to turn over from my back to right side, it was such a travail that any hope of sleeping again was gone in a minute. My Friend told me to walk. We had skipped a few days so the ankles could recover, and my body felt that it lacked exercise (even though I spent the better part of last night pacing), so I did five laps in the garage, came home to the recliner, and fell dead away for over an hour.

Next mistake; well, when I wake on my own (no alarm, no one calling me) and after more than 25 minutes, my arms shake for about a minute before they suddenly fall still. I didn’t set an alarm, so sure enough there was shaking, but the shaking spread to the legs and transformed into an almost painful rigidity. That was new, and seemed to last longer than a minute. Even after the arms and legs stopped being active, the discomfort lingered. When Yuri called lunch, I could barely get to the kitchen.

After lunch, I tried to rest again – no go.

If this is a two steps forward one back kind of thing, it is of a new and improved order of magnitude, and one I could easily live without.

I felt gradually better as the day went on – not good, mind you, but better. We paced the garage again this evening, I timed a twenty minute nap and woke feeling closer to normal. I was also able to attend a Zoom meeting for a PD Recovery support group, or at least the first forty minutes. I like those guys, but my hearing being what it is, anything short of standard American pronunciation is tough for me to understand. But I left early because Yuri was here and the afternoon snack was threatening to merge into dinner.

Monday, November 29

Yuri tried to rouse me from my slumber several times, until he finally communicated (in what language I’m not sure) that further resistance was futile. I grumbled out of bed and, slow as warm tar, oozed my way to the kitchen. As I approached the hall window, he drew open the drapes in admirably theatrical style to reveal large, floppy snowflakes, collecting and turning the garden below into a picture postcard.

By the time we headed for the garage next door, an hour later, that momentary beauty had turned to a light slush. It had snowed just enough to delight, but not so much as to cause problems. Walking in the garage was to tread that same edge – enough to provide exercise, not so much as to hurt the ankles.

Whenever I check, these days, the pericardium is glowing a turbulence of white light and that same light is flooding into the medulla oblongata. My Friend says that I am healing at an accelerated pace. Not to be snarky about it, but rapid healing apparently causes intense discomfort.

The attitudinal challenge is not to let it get me down, that in terms of walking I am almost exactly where I was on August first, the day I began recovering from those two weeks flat on my back in the hospital, and that’s just the way it is. But it’s hard. Progress is hidden – to be kind about it – and not always expressed in obvious ways, and what seemed like well-established forward movement can vanish overnight and without explanation.

Wednesday, November 24

Around three or four this morning, I lost the sweet position for sleep, and had to get up several times to crawl up from the foot of the bed in an attempt to find another sweet position, one that I could sleep in. About the fifth or sixth try I decided that I needed to pace, that no position would work unless I did, so I got up to put on my sandals. As I picked up the first sandal I felt surge of pure anger, it was all I could do not to throw it at the bed. Then I got up to walk and for the next five minutes or so, I was on the para/sympathetic spectrum – walking was effortlessly fluid, without significant pain. I felt safe and happy in my body, and was symptom free! I also understood why pacing allows me to sleep; it releases dopamine.

For awhile it seemed that I could sustain the dopamine/adrenalin release by force of will (I could feel it in my brain), I even tried manufacturing a tantrum, but the release waned and there was no positive residual effect. Except that now I know that I can get there – be cured, am so very close – just as my heart has been telling me.

Walking later in the garage was painful and difficult, and even after a nap (gratefully taken after so little sleep last night) movement was labored and discomfort prevailed. It was striking, the contrast between those five minutes early this morning and the rest of the day.

According to the Parkinson’s Recovery Project (pdRecovery.org), people with PD symptoms function outside of the normal sympathetic/parasympathetic continuum. The problem, according to this hypothesis, is not a shortage of dopamine (decades of research have proven this, but convention overrides it) rather a deficit in its release. Anger is on the sympathetic end of that continuum, therefore it makes sense that the anger triggered a dopamine/adrenalin surge strong enough to breach the threshold of how much is required to stimulate fluid and automatic movement. That the exercises associated with PRP prepare for such a surge means that for five minutes this morning I experienced a cure; one that may not yet be strong enough to sustain itself, but it will gain stability in time. That being said, for about fifteen minutes after the surge, movement in my upper body remained easy and fluid.

This is exactly the encouragement to continue that I need just now. To my fellow travelers — be encouraged, too.

Tuesday, November 16

I woke at six after having slept straight (as far as I can recall) from midnight. I tried to sleep more, but gave up at six-thirty, paced the hall for awhile, tried the recliner, gave up again. Then I paced the hall again and after five or six laps fell into a perfectly normal stride and was able to maintain it (mostly) for twenty minutes or so. I rested ten minutes and tried pacing again, but it took several more reps before I could regain that smooth and silent gait. There was some pain in the left ankle but not much. All things considered, it was an interesting early morning (and typing this has been elegant).

Fast forward about an hour and a half, we’re ready to go to the garage for a rainy weather walk. I’m expecting to start out a little sore with the left foot which will work its way out and reward me with the normal stride of this morning, but just getting to the front door was so painful, I instantly had my doubts. By the time we got to the garage, my foot hurt while sitting, and our efforts at an indoor promenade came to nothing. What a difference an hour and a half makes.

After changing into at-home garb, I napped for a half hour and was barely able to get to the kitchen for the pain. I napped another hour after lunch, and managed to get to the study afterwards with a little less pain, but not much.

Typing continues elegant.

We began yin tui na at about 14:45. The ankle was very sore, walking to open the front door was difficult. Candace adjusted placement of hands to cover the most painful areas. I immediately felt considerable heat from her hands, and my arms and chest quickly became shaky and tight. The left leg seemed to display restless leg syndrome, but with only two exceptions, it only tightened, there was never a jumpy release. After about twenty minutes I checked to see if I felt safe. The answer was a strong “no!” so I asked her to lighten the touch. She did and there was an improvement in safety, but the tension and shakiness in arms and chest (and left leg) continued. I asked for an adjustment again about ten minutes later, and she reported that she was just barely touching me. The left leg became extremely uncomfortable, so I asked to switch legs for a few minutes. Nothing really changed, so she switched back to the left leg and a short while after, we ended the session. Candace reported that she felt none of the small releases that were present the last two sessions.

I was so tense and shaky for the next ten or fifteen minutes I could barely move. The ankle still hurt while walking, maybe not quite as intensely as before, but close.

Typing is better than I expected it to be, but no longer elegant. About a half hour has passed since we closed session. The tension gradually abated, and I was able to do ten rainy-weather laps in the garage; painful but tolerable.

Wednesday, November 17

An early morning pacing of the hallway featured only light pain in the ankle and worked wondrously well as a sleep aid. When I dragged myself out of bed for real a couple of hours later, the ankle screamed its objection. I don’t understand.

There was no morning walk today, instead I prepared for a lesson in Alexander technique. The first hour was fairly familiar stuff about alignment, wonderfully taught. Monika, the teacher, also mentioned that she had recently discovered the Parkinson’s Recovery Project, so we compared notes on that for awhile. The final fifteen minutes were face up on a massage table. Five minutes into it my arms and chest tensed up and my legs began to clench and twitch. It became extremely uncomfortable. Monika assured me that I was safe, I told her about being hit by a car fifty years ago and the injuries sustained (for more on this – http://davidzarko.us/WP/2021/03/08/). Each injury showed up all over again, similar to yesterday’s reaction to yin tui na. Tonight, I am exhausted so we did only four laps on the sagrata. To be continued.

Thursday, November 18

I slept extremely well with only one wakeful period of about 30 minutes which I spent pacing the hall. I realize that for me it is extremely important to shed the notion that sleep can only be healthy if it occurs as eight uninterrupted hours. Several years ago I read how research has revealed that historically the eight-hour night became an accepted standard only during the industrial revolution. Before that sea-change in human behavior, it was considered normal to divide the night into first, second, and even third sleeps. So, that I sleep well and spend twenty to thirty minutes once or twice during the night doing something other than sleeping is not a contradiction, and releases me from unnecessary anxiety.

When I paced during a pause last night, my left ankle was sore but not disabled. When I walked from bedroom to kitchen shortly after waking, the pain was debilitating. Normally when that’s the case, the muscles relax during the time at table eating breakfast. Today, they would have none of that. Consequentially, walking the sagrata proved almost impossible. 

Before the walk, my right arm was notably quiet and relaxed (it tremors and is often clenched in some way). When I tried walking, the pain sent “unsafe” signals to my brain and the arm would begin to tighten and shake. When I observed that, it became so obvious that all of my PD symptoms are rooted in habitual fear and contraction. This was encouraging and freeing information, because habits – even decades-long habits – can be released.

When I got home I fell deeply asleep in the recliner while Yuri made lunch, as if I’d not slept in weeks and even though I’d done very little physical exercise; once again, my brain is working hard to reconnect healthy channels and seizes upon rest like a hungry animal.

The evening walk was much easier than has been recently the case. The ankle hurt but less so. The gait was relatively quiet, though I have noticed that it is often more confident and stately at the beginning of a lap, while at the end it often degenerates into a bunch of tiny and rushed shuffles.

Friday, November 19

The morning walk was a bit better than it has been recently, and wore me out as has lately been the case. Still, we did five laps, not all shuffling, ankle pain was reduced, and the stride was more or less regular.

Candace did another yin tui na session. She started on the foot and about halfway through moved to the left knee. There were periods of calm but mostly I was profoundly uncomfortable and disturbed. I was less formal about it, but stopped short of screaming and writhing. At some point I felt as if my head were to explode.

Evening walk, ten laps and regards quality about two-thirds of the way back to where it was two weeks ago. Congratulations all around.

Saturday, November 20

The morning walk leaned a bit further towards regaining what was normal two weeks ago. Ankle pain is almost gone, and I was again able to treat the experience as relearning how to walk rather than failing to walk well. I’m reminded of Janice’s metaphor of rebuilding after a war; after hostilities cease, the real work begins. It is much more demanding of time and effort to construct than it is to destroy, and sometimes partially damaged structures have to fall to open up space for rebuilding. That’s where I am now. For all that, I really feel good, am lucky to have wonderful caregivers and friends, and enjoy being wheeled around. And I don’t mind at all not having to cook or clean up. I’ll be happy to have my independence back someday, but in the meantime I like the life I’m living.

Afternoon meditation included a symptom-free interlude of some minutes about half way through, as it often does. That was surrounded by a rather uncomfortable mass of twitching and tension. Moving about the apartment beforehand was like walking on pea gravel, afterwards like walking on a ship in slightly un-still water. Don’t worry, I am very careful.

The evening walk was a lot like this morning’s, if a bit more difficult.

But I feel good, clear, and dedicated to seeing this thing through – said Orville to Wilbur.

Sunday, November 21

It was foggy on Piazza del Duomo, and the sagrato was a bit slippery. It was also crowded with people going to mass (or maybe tourists, it was hard to know). My ankles hurt a little, and walking was difficult. All those things together equaled two laps and early retirement. 

I slept like a stone for twenty minutes when we got home as if I’d done something.

After lunch typing was smooth for like ten minutes, then devolved into chaos and hours later, there it remains. Oh right! I’m in limp mode! That also explains a three lap stroll this evening.

Call it a day off. Except that I’ve been doing a lot of the internal work associated with Recovery, both today and yesterday. I slept a lot last night and have been tired and borderline anxious all day. The work may have put things in motion in unexpected and strange ways.

Monday, November 22

It was damp this morning, so we put in 250 meters in the garage. It wasn’t pretty, but it was exercise – AND there was almost no ankle pain (yin tui na has helped, plus lots of re-association work, yesterday).  And I am still fairly limp.

I continued internal work this afternoon despite my feeling groggy and uncomfortable.

The evening walk we took on the sagrato. I shuffled much of the time, and after five laps could feel that shuffling on that rough stone is hard on the ankles. Rain is forecast for the rest of the week, but I think we’ll stick to the garage with its smooth concrete regardless of weather.

Third night in a row of not suffering tightness and discomfort (especially lower body) while watching television. Just sayin’.

Tuesday, November 9 

The left ankle was terribly painful to walk on all morning, I otherwise felt pretty good. A friend graciously agreed to read Janice’s instructions for yin tui na, and to apply them to that foot, and she gave me a session this afternoon. At some point about halfway through I became so relaxed that I thought, “that’s it, the Parkinson’s is gone”, and I remained in that state until we both realized together that the session was over, at which point the tension flooded back. The session seemed for both of us to have lasted ten minutes, but when we checked the time it had gone an hour.

Rain threatened, so Roman, Yuri, and I took the evening walk in the garage next door. At some point, Roman began telling me to walk like a rooster. That was fun and led to my doing a version of Capitano Spavento from la commedia dell’arte. That was a lot of fun, and morphed into the strut of an old time blues singer (which made walking easier) and led to my singing a jazzy Summertime. Roman was thereby inspired to sing a Ukrainian folksong (which made me tear up a tad) and I finished with Amazing Grace. I was still limping and shuffling and in pain, but I’ve not walked so enjoyably in years.

Wednesday, November 10

Slept in tiny chunks all night, got maybe a total of four disjointed hours of sleep. 

We walked the sagrato, that too was at a level I thought I’d passed at least two months ago. The ankles (mostly left) were very sore, I shuffled, posture was hard to maintain. 

Had a snack with my wonderful friend Lisa, and managed somehow to stay awake. I dozed for maybe five minutes before lunch, and 30 minutes after, before the legs started twitching and I had to give up. 

Another wonderful friend, Nan, stopped by, and after I garlanded her with complaints, her visit cheered me up. Our evening walk was in the garage, and I’ve done worse, but it was still at a level below my first attempt at walking there almost a year ago. We sang a little which kept us from crashing – or I should say kept me from crashing.

Thursday, November 11

A really sore left ankle coupled with side effects from NyQuil that I took last night to dull a sinus headache, made walking the sagrato impossible this morning. I tried, but the pain told other muscles to shut down. 

By mid-afternoon the ankle pain had lessened, but walking around the apartment remained difficult. 

Shiatsu was wonderful. I noticed towards the end that all the usual suspects for tension had relaxed. I was filled with hope, but the instant that Michele stopped working, the tension flowed back. There is insight in that, I just don’t know what it is.

The evening walk didn’t hold a candle to my embodiment of a Roman braggadocio of only two days ago (in fact it was hard to believe so little time lay between the two) or even of my regular walk of a week or so ago, but at least I got through a noisy, limping, and uneven eight laps and never needed to stop for misery checks.

Friday, November 12

I slept well save for an hour after 01:45 when I had to pace in order to reset my body’s comfort gauge. And turning in bed, even under a light cover, has become a regular and doable thing, so the variety of positions I can sleep in has also increased considerably.

Walking this morning was another thing entirely. Two laps, lots of pain in my left foot, exhausted pauses, noisy shuffling, and frustrated mumblings of mamma mia.

Candace did nother yin tui na session this afternoon. She says the foot was quieter today than on Tuesday. What may come of these sessions is unsure, but so it is with everything. The adventure continues.

Roman leaves on Sunday for six weeks in Ukraine. He and Maria are, as it turns out, heading to a homeland on the verge of a possible crisis. I dearly hope they will be safe.

My voice has mostly been strong this week (witness the singing) and word formation has posed no problems. At times last night there seemed to be an increase in production of saliva, but – if I can really tell the difference – it was not due to a defective swallowing reflex. 

But the sudden difficulties in walking are worrying. Friends have commented on how strange it was to be doing so much better in that way barely a week ago. Michele attributes that to natural cycles while the brain solidifies what it learned. Could be. It will be interesting to see what happens over the next few days.

This evening’s walk was a close copy of yesterday evening’s, which is not especially satisfying, but better than a repeat of the last two mornings.

Saturday, November 13

I seem to have hit a pattern as this morning’s attempt to walk failed at one lap. The good news is that it didn’t upset me.

I asked Janice about the twitching that Candace feels while doing yin tui na on my foot, and she replied they are releases and are a very good sign. She has had patients resolve their Parkinson’s symptoms through treatment of a foot injury. (If you want more detail on that visit pdRecovery.org and download the free book, Yin Tui Na – very interesting stuff.)

I slept well last night (only had to get up to pace, once) but had a hard time rising which is unusual for me. Then we wheeled to the Duomo, I tried to walk, failed, wheeled back home, and I napped for an hour. All my therapists say that the rapid improvements of up to a week or ten days ago, plus the brain changes happening because of yin tui na, require extra rest, and that feels like an accurate assessment. Then as if to drive the point home, I napped another hour and a half after lunch, and it was not optional.

The evening stroll on the sagrato followed the recent pattern; eight (painful) laps of medium quality.

Sunday, November 14

This morning’s laps were five, and with a very sore ankle. That is, I guess, an improvement, but I can’t help but remember that a noisy five laps with rests in the wheelchair was a triumph in early September, so I find it discouraging.

However, I napped well yesterday, slept well last night, and napped well again today, so maybe there is something to the tired brain theory. This tendency towards sleep is accompanied by an indescribable internal sensation that used to bother me, but now seems like the yawn of deep recovery. We shall see.

Also, I’ve been on and off extremely limp this past week or so.

It’s drizzling this evening, but we took a chance and went to the Duomo. After a lap, it became obvious that the pavement was too slippery for me to get comfortable, Yuri hadn’t brought the key to the garage, so we came home. The ankle I don’t think will suffer much from the rest.

Monday, November 15

I’ve had a couple of MRI’s on my left foot before where I stuck my foot in a box and chatted with the tech for twenty minutes. I guess today was the (incredibly noisy) real thing. Nevertheless, I was able to nap through most of it. Results are available online in a week.

I slept well overnight despite yesterday’s frequent naps, and got up this morning reluctantly. And I don’t know if it’s the yin tui na, or what, but the last few days I have felt vastly better. Symptoms are largely in place, but some underlying condition has shifted for the good, at least for now. The only thing I can come up with as a reliable example of an improved symptom is that lately I can put on and take off my knit jacket without it seeming that I’m violating the laws of physics. I’ve not had that ability for at least a year and a half.

By the way, there have been periods of upper body pins and needles all week, often intense, lasting five minutes maximum.

The evening walk, while painful, was back on track; eight kitty-approved laps.

Tuesday, November 2

Didn’t sleep much last night, and I had to rise early for an appointment. We did laps on Costituente, nothing remarkable, my ankle loosened as we went. I napped briefly before and after lunch. Overwhelmed with trying to plan a hot springs trip for tomorrow – in part because typing is horrible, in part because I feel rather awful, in major part because the website is confusing and doesn’t match what is actually available – after several hours I decided that to get the package we wanted, the trip was best moved to Monday. But all the planning in Italian left me really shaky and tight by the time Roman got here at five. We walked Constituente again, but this time the downhill sections I did without the benefit of Roman’s arm and the walk as a whole was good. 

Wednesday, November 3

We walked indoors because of rain, at least half of that without Roman’s arm. I was exhausted afterwards. Had a wonderful nap, one that left me slow but not uncomfortable.

By evening the rain had abated (we could see stars) so we did laps on Via delle Costituente, me without support on the decline, with support on the incline. The painful foot worked its way towards freedom, the body began to exhibit a healthy sway. I felt good.

Thursday, November 4

The annual certification of my heating system happened this morning, and immediately after that, a pedicure, so except for incidental walking the morning went by without real exercise. Unless you consider reserving and paying for a spa day in Bagno Vignoni physically demanding, and given their rambling website and a rather antique method of payment, it was at least physically draining. A nap will take care of that.

But before I napped, my doctor Leonardo stopped by to give me a flu shot. It’s always good to see him.

Despite my having gotten nine solid hours of sleep last night, I napped 45 minutes (in two sections) and it although it was delicious, it left me limp and sort of empty inside.

Come evening, my feet hurt too much for a good walk. The left ankle loosened in four laps, but the aforementioned limpness signaled an early end.

Typing was really quite good pre-nap, post-nap it’s been a disaster (until this line).

Friday, November 5

Not having a real walk yesterday took its toll last night. Whereas I’ve been falling asleep relatively early and without ceremony, I started getting restless while trying to watch television, and spent the first hour and a half in bed a mass of tightening muscles. So, I paced the hall for thirty minutes and could feel the body relax as I was doing it. Sleep came easily after that, but the quality of my walk seemed a throwback to several months ago. Until the day before yesterday I was experiencing a sharp and steady improvement generally, so I guess the two steps ahead one step back rule is playing itself out again, and on a grand scale.

This morning’s stroll was better than nothing, but just barely.

I expected little from the evening stroll, but was surprised with how silent it was, how controlled, how independent, and how therapeutic – the left ankle hurt less as we walked.

But the evening of television was made difficult again by uncomfortable and twitchy legs, and had to be interrupted several times by pacing. Sleep was sound but also needed to be interrupted twice to pace the hallway. Pacing always works, but resigning myself to the need sometimes takes more time than the actual exercise.

Intuitively I feel that all of the above is part of a healing process. Healing is seldom along a straight track and often involves discomfort along the way.

Saturday, November 6

I had great hope for my ankle during morning prep, but as soon as we took our first steps on the sagrato I knew I was in trouble. Katrin gave me a remarkable and powerful physiotherapy session yesterday, and its benefits were felt last evening. But as often happens on the day after I get slammed with the more rigorous effects of the work. I’m super limp and regards the two steps forward rule, I feel like I’ve plummeted back by two months. This morning, my left ankle was so sore I could barely walk, and movement helped but only a little. We got six painful laps in before I threw in the towel.

This evening, it was raining lightly with a chill wind by the time we arrived at the Duomo, and my ankle wasn’t going to sustain a walk, so we chalked it up to a good diversion and fresh air and went back home. I felt better getting out of the house and can pace the hallway later for exercise.

Sunday, November 7

I slept well, again, with small difficulty getting to sleep, quickly resolved by pacing. I’ve been turning over in bed at night, something I’ve not been able to do in some months; it’s not easy but I often wake up in the morning in positions I don’t remember taking before sleep. Also the swallow reflex is functioning again which means drool collects only when, due to nasal congestion, I sleep with my mouth open. There are other improvements too, harder to describe.

I start with the positive because my left ankle hurts badly and walking continues to feel more or less like it did two weeks out of the hospital, and I find that very frustrating. But I meditated just now and feel better for it instead of coming out psychically beat up. And evening discomfort watching television was less extreme yesterday than is was the day before.

Typing is very much improved, but only in spurts.

It is important to focus on gratitude, and I’ve much to be grateful for.

I am extremely limp today, which viewed as limpness (rather than weakness) means a strong recovery symptom. 

And in the spirit of focussing on the positive – tomorrow we go to the hot springs at Bagno Vignoni!

Monday, November 8

The Etruscans took the waters at Bagno Vignoni. So did the Romans. The hot springs have drawn Italians to the site for hundreds of years. You can feel it in the air, people have come there to relax for millennia.

I worried about what we would do for seven hours, so I ordered packages to include massage, sauna, and pools. That was nice, but the view across the valley was almost entertainment enough, and the waters were wonderful. Next time I’ll save the money.

What was especially delightful to me was that walking in the pool was smooth and without pain. But getting out of the car in Orvieto my legs felt better and my ankles much worse. I have no idea why. 

Still the only bad thing about our day there was that we had to leave. Hotel Posta Marcucci, if you’re looking.

Tuesday, October 26

I had an appointment with a speech therapist this morning because a couple of months ago there were problems with my voice – another victim of the hospital stay. This week I found that I can sing again, so I wondered what was the point. But the dottoressa who saw me was very nice, she spoke clearly, and I had a great time. She could detect nothing bad about my voice but asked me back next week to meet a colleague. It costs nothing so why not?

Consequently, we started our morning walk rather late, and my left ankle was very sore, so it was basically a scratch; first one in almost three months.

Afternoon was wasted trying to get a DIV-1099. The website ran me around in circles, and other things left me feeling like I’d been immersed in an episode of The Twilight Zone. That made me tired and cranky like a baby in an old diaper.

Tonight’s walk was 95% feline.

Wednesday, October 27

This morning’s walk was 90% feline with cats actually present (and playfully romping) in the piazza. The 10% of shuffling was due mainly to my craning my neck to see what they were up to, so you could say the walk was 100% and not be stretching it too much.

On the other hand, any self-respecting cat would be embarrassed to be associated with the way I shuffle around the apartment. That contrast in movement has been going on for years. A therapist I talk to long distance suggested it is a manifestation of self-imposed perception of being restrained in some way. He may be right.

I meditated just now, and my state switched several times between shaking (both arms, neck, and torso) and profound calm. My intuitive self tells me that the shaking is a discharge of static energy or electricity. I don’t know if that makes sense in terms of Asian medicine. I’ve also often had similar shaking during the night when sleeping. I usually shake lightly, and can suppress it. When I let it go it turns violent for awhile, then will suddenly stop and be followed by calm. The whole cycle seems to last a minute or two.

Evening walk, fifty-fifty, and without the excuse of having cats to watch.

Typing has been random all day.

After shiatsu, I always feel more relaxed. Right after shiatsu today, my legs were jelly, which may account for the sloppy walk.

Thursday, October 28

After Roman massages my feet and legs in the morning, he lets me rest (the massage being so strenuous for me!) for a few minutes. I usually just lie there and wish we could move on to the next thing on the morning to do list, but today I drifted into a state more relaxed than I have enjoyed in a long, long time. The same thing happed an hour or so later while we waited our turn at a very busy post office, and again at home after our walk. I could get used to that. By the way, I also slept an extremely pleasant eight hours.

My left ankle was very sore at the start of our pacing the sagrato but it loosened up after around six laps and the remaining four laps were not shameful at all.

When I came out of meditation this afternoon, I went through the shaking cycle described yesterday, then descended into feeling profoundly uncomfortable for an hour or more. Susan came over and good company helped, and by the time we were preparing for the evening walk, I felt pretty good.

The walk was all over the place. Left ankle was sore again, only it didn’t loosen up. At lap two all the cats came scampering out. At lap four they all went back inside – I suspect food was involved.

Friday, October 29

Logged eight hours sleep again with only one brief wakeful period that I can remember, and woke feeling very relaxed. Perhaps I am very limp, because walking was difficult when we arrived at the sagrato. That was partly due to a painful left ankle again, something that I didn’t even notice at home. Combine that with limpness, we only did six slow laps before throwing in the towel. But I have to also say that at various times preparing for the walk, I felt like nothing was symptomatic aside from the walk. At this moment, I would add a few things (typing is sloppy the way it is when I’m limp), but overall I feel good – if I don’t have to move around, and even then the mobility issues don’t affect my spirit.

Both post-walk nap and afternoon meditation were very satisfying, and neither left me uncomfortable.

Evening walk was the same, if marginally better than the morning.

By the way, music is often affecting me in energy centers (chakra, if you prefer). That can’t be a bad thing.

Saturday, October 30

Again, sleep was wonderful.

Again, left ankle was sore, but limpness was less pronounced so we were able to put in six laps; the ankle loosened up after three laps and started hurting again at five and a half.

Again, I feel better in all other ways (though I can’t give typing as high a score as other things).

I napped for two hours (in 23 minute chunks) after an hour of afternoon meditation. The sleep was sweet beyond compare, and I only woke when Natalia arrived. As usual my arms shook after waking, but as Natalia put things in order in the kitchen, I played with a state between waking and sleep in which there were no PD symptoms but I was conscious of my environment.

We went out shortly after. The town is full of people tonight, and I felt on top of the world. The left ankle still hurt when we walked, but a little less so. We put in seven laps and decided to quit before the ankle started to hurt again.

Sunday, October 31

I paid for yesterday’s naps in trying to get to sleep last night. I eventually did, and slept soundly, but it took all morning to wake up. After five painful laps on the sagrato, we wheeled home and I napped for a half hour until my legs got twitchy and restless. Yesterday’s euphoria seemed like a dream all morning. The town was full, and I enjoyed watching people walk and interact, but from a reserved distance. Friends didn’t see me, and that was fine. A few said hello, but I was barely able to respond. I felt invisible.

Legs are, at the same time, stronger than usual and extremely limp. That, plus ankle pain, makes for a very odd walking experience.

I managed to limit afternoon naps to one short one before lunch, which bodes better for a regular night’s sleep. Then I joined a group on Zoom of persons with PD who are following the Recovery Project’s protocol, which was an uplifting experience.

Natalia arrived with news that the city was packed with people, far too many to afford a wheelchair journey to the Duomo, so we opted instead for the almost-flat, smoothly paved Piazza Gonzago nearby. Again, the left ankle hurt enough to disrupt the perfection of my walk. And I yearned to see the town abustling, but it was not to be.

Monday, November 1

This is not a place of black umbrellas.

It is raining lightly this morning, but we headed for the Duomo just the same. My legs feel strong, but the left ankle hurts badly when I walk, so after three laps we called it a day. But what a day is was!

Remember the angel of a couple of weeks ago? A woman of about my age who lives across the piazza from the Duomo who congratulated us on our persistent exercise program? Later she told us that her husband has trouble walking but refuses to go out. A few days after that we saw them walking together in the piazza. Exuberant waves were exchanged. This morning, she threw open her windows and shouted her greetings. Minutes later, her husband joined her and we all saluted each other as if were siblings reunited after a long separation.

There was a funeral at the Duomo just ending. Flowers spilled out the side door near to us, a river of color sprinkled by the rain. From the main door another river of color was created by those mourning their loss and celebrating their memories as they unfurled umbrellas. It was the third act of Our Town without the shades of puritanism. It was la nostra città. Visitors filled the piazza, mostly Italians celebrating All Saints Day. They, too, opened their umbrellas to add to the spectacle. 

Everywhere blossoms vibrated with color, as did children dressed in their best after last night’s costumes.

We took brief shelter under a tarp in front of a shop selling postcards. The proprietor treated us like old friends, moving his outdoor furniture to afford us maximum protection from the increasing rain. When the rain subsided, Roman suggested we go to the caffe in Piazza del Popolo. There we sat near a cocker spaniel whose bobbed tail never stopped wagging even though his humans were deep in conversation and the piazza was empty of other dogs.

Sometimes life is so beautiful as to be almost unbearable.

Tonight the rain was a bit heavier, so we walked the parking garage under the palazzo next door. I did a significant part of that on my own; my feet were mostly noisy, but we were both of us ecstatic. 

Tuesday, October 19

This morning was a “step back”. We walked a full kilometer on the sagrato and my posture was good 90% of the time, but I never got a cat-like stride for more than a few meters at a time; in other words a session I would have been quite pleased with two weeks ago today was a disappointment. I napped for almost two hours after lunch but in 23 minute sections, so when I finally got up I felt refreshed. The evening walk was with Natalia to San Giovenale. I think my legs may be back to a recovery symptom called limpness, because the walk was difficult (although compared to similar walks in May and June it was elegant).

Wednesday, October 20

Movement around the house during my morning routine was so encouraging that when Roman suggested we walk Via del Duomo I agreed with only minor reservations. But limpness was still present once we were outside, and VdD with its slight incline wore me out in a single lap, so we finished up with five laps on the sagrato, also more difficult than it has been for a month or more.

I’ve been sleeping well at night, but naps yesterday and today were deep, needed, and restorative.

The evening walk would have made me proud several weeks ago, today it just felt difficult, but the shakiness and robotic gestures of this afternoon melted away during the walk so the lesson there is not to complain when expectations are not perfectly met.

Thursday, October 21

Legs are extremely limp today (a recovery symptom). The strange thing about limpness is that while it hits my legs particularly, they are also stronger than they have been for a long time.

During the morning walk on the sagrato Roman told me that the important thing is that twice a day I walk a full kilometer (two in total), that it’s nice when there is no shuffling and my posture is good, but not to fret when the gait is less than perfect. Good advice. That said my posture was pretty good and my feet were pretty quiet. 

We returned home at around noon with just enough time to change shirts and gather stuff for a lunch in the country with mostly Californians. Victoria drove, Susan helped me in and out, up and down, Sher cooked a delicious meal, Buck shared the house, terrace, and garden he built with his own hands. I ate spaghetti. No small feat that eating of pasta; it requires coordination and flexibility that I don’t have much of today. I’m having another “step back” day – feeling generally uncomfortable and not moving at all freely. But the company was good, and it was a nice escape into the countryside which is very beautiful around here.

I took two short naps between arriving home and Natasha at five, and by the time we left for a walk I was feeling pretty shaky (not tremulous, shaky – an invisible discomfort), but walking quickly calmed that. The journey to San Giovenale and back was way less than perfect, but still leagues ahead of what I could do last June.

Typing, which is kind of a bellwether, is pretty awkward and jerky, but manages to be more or less accurate.

Friday, October 22

Slept straight through last night without so much as warm milk as an aid, only waking briefly at 05:30 to adjust room temperature. When I finally got up close to nine, I felt spry and spritely, movement was more fluid than in a long time, and I imagined a similar day spreading out before me. Well, the morning walk was fine but didn’t win any awards, and, as is often the case, walking around the house is a bad joke. But inwardly I still feel spry, so here’s hoping that earlier spiritedness is a harbinger of something more sustainable.

The session with Katrin focussed on head, neck, and shoulders. Fine with me. And it feels like she planted a time bomb.

Then after a day of not feeling great (sinus headache mostly but also awkward gait) the evening walk up and down Via delle Costituente – with strolling couples, babies in trams, and dogs aplenty – was a total surprise; A+, double meow, and a purr.

Saturday, October 23

I slept extremely well, and although I logged in eight hours without a significant break, I could have slept another hour or two when Roman signaled it was time to hit the trail. However – as is often the case the day after physiotherapy – I am hyper-relaxed (or hyper-limp, a recovery symptom, I can’t tell which) and that was reflected first in movement around the house, then later in the quality of my walk on the sagrato. Roman kept reminding me that the noisy shuffling was due to limpness not rigidity, and therefore not a cause for worry, and he is right. But that there was not one cat present in the piazza this morning seemed an apt metaphor for how my walk felt.

I napped before and after lunch (in 23 minute chunks) and finally became uncomfortable resting after about an hour. When I got up I could barely move at all.

Yet when friends inquired as to how I was, I answered honestly that I felt great. And I did. It was a wonderful morning.

Sitting at my desk is the coolest spot in the house, and after the walk when I always get a change of clothes, I opted for too light a choice of shirts. So, after a half hour, I went to find a cardigan. While threading my arms through the sleeves I accidentally pressed the alarm bracelet I have been wearing at home. By the time I understood the warning signal from the main unit was sounding, it had already entered a mode in which pressing the cancel button didn’t seem to do anything. So, I raced back to the studio to grab my phone, as I was told that someone would call me to verify the alarm, then raced back to the unit in my bedroom to lean on the cancel button to see if that would have any affect. It caused the machine to show different patterns of the three indicator lights, and eventually the red alarm light went off. No one called. In the meantime I had raced back and forth with my legs ultra-limp trying to prevent a false alarm. I’m not sure what the takeaway is for all that pointless fuss.

Because I felt awkward and tired all afternoon, I anticipated the evening walk to San Giovenale to be a disaster, and was pleasantly surprised when it wasn’t. I did make the mistake of asking that we do Piazza Gonzaga (which is macadamized) twice, so the final fifty or so meters were a tired mess, but everything until then… a short meow, not too loud. 

The church bells rang as we arrived at cliff’s edge.

Sunday, October 24

I slept four hours, was up for one, slept four more. During that wakeful hour I felt like I was moving on the edge of wonderful. When I got up for real, walking was a shambles which turned my expectations for the morning stroll towards the negative, but we exited early, and were on the sagrato by 09:30. The walk was pussyfooting from the get go, and we added two laps to total almost one and a half kilometers.

We got home shortly after eleven and changed me into “house clothes” (I have several costumes that are changed throughout the day, sort of like a character in Downton Abbey) when I remembered lunch at Maria’s, so ten minutes rest, a quick change into going out clothes, and down to the street for a pick me up.

Lunch was hosted by the three Gagliano sisters, Maria, her twin Concetta, and Sabrina. Susan was also invited (having prepared an Italian thanksgiving meal for twenty-six only yesterday). We began with eggplant parmesan, moved on to a frittata with potatoes and onions, peaked with salmon lasagna, wound down with a four-cheese plate with savory jams, and finished with Neapolitan cannoli. I indulged in a half glass of pinot noir. 

I arrived home with time only for a ten-minute nap when Natalia arrived to take me on an evening walk. Back to the sagrato. I was not exactly drunk, but I could feel the wine. The first seven laps, my legs were like jell-o, and I kept saying that I had not felt so unstable in a month. Then exactly at the start of lap eight everything evened out and we did four near-perfect laps to finish with twelve.

Monday, October 25

The bean counter in me suggests reporting that I am sleeping well, there is only a normal amount of drool on my pillow, my voice is clear most of the time (and I can sing much of the time), the right arm tremor is at a minimum (as is tension), and posture improves (at least in fits and starts). Walking – always better outdoors than in – is all over the map.

We did eleven reps on the sagrato this morning, good cat-like steps when we weren’t talking, some occasional scraping when we were. The evening walk was unremarkable in either direction, positive or negative.

We stopped at Blue Bar on the way home. Antonny played a few songs on his guitar. When he riffs or plays his own music he is truly extraordinary. I wish I knew a producer.

Takeaway for the week

The importance of accepting where I am at – I only have the material at hand to work with, if I can’t accept what I have, no work can be done.

Tuesday, October 12

Aside from pleasant times with friends and gorgeous weather, nothing of note happened today. Walking, both morning and evening was like a cat on dry leaves.

Wednesday, October 13

The town was empty this morning when we went to the Duomo for my exercise routine, and the weather was bright and beautiful. Walking took three laps to warm up fully, then the remainder flowed in a manner befitting any self-respecting feline.

Lasagna for lunch, then a half hour nap that rendered me zombie-like and awkward. Pacing the hall twelve times woke up brain/muscle connections.

Shiatsu was, once again too brief (why does Michele have to quit at all?). He says my body is looser with every session. The work left me energized. 

Natalia stood in for Roman who is finally getting some time off, so we took a walk to San Giovenale without the conveyance of a wheelchair. We went to the wall, admired the view, and returned with no need to lean or grab a pole (which last spring I had to do every few minutes). To compare the walk to that of any living creature would be insulting to them, but I did it without being exhausted afterwards.

However, the combination of strenuous (for me) exercise and the energy derived from shiatsu leaves me this evening rather uncomfortable. So, I paced the hall for a while, twice, and I slept well.

Thursday, October 14

We did a full kilometer on the Duomo sagrato this morning in a manner that would make even the stealthiest of cats jealous. The grand finale should have been accompanied by bells, applause, or at least a piano, but all we got was one cat meowing. Roman speculated that the others were at work, I suggested they may have caught the high speed train south in search of warmer weather. At any rate, at about our sixth lap, a lady who lives across the piazza stopped to compliment us on our persistence, to comment on my progress, and to wish me a good recovery. There are angels everywhere if you look.

I napped for forty minutes after lunch, and remembered upon waking why I used to set an alarm for 25 minutes; forty is too long, it leaves me stupid. So I did ten laps in the hall and had a reasonably productive afternoon.

Evening walk to San Giovenale was as awesome as this morning’s – quiet, good posture, long strides, and even though we repeated Piazza Gonzago thrice on the way back, I didn’t have to stop at all. I feel clear-headed and taller. Fine, let the recovery continue!

Friday, October 15

There was a cold wind in both Piazza del Duomo and Via delle Costituente this morning, but Via del Duomo (which connects the two) was calm and sunny, so we decided to leave the wheel chair at Marino Moretti’s studio on the Piazza and walked the Via instead. Two laps. Cat-like steps most of the time, no breaks. It felt triumphant. Muscles were not quite as relaxed as I would like, as it seemed that I didn’t feel quite safe walking an active street with a long incline, so that will be something to address this evening.

By the way, I slept well again last night.

After lunch I napped for about twenty minutes and woke without zombie effects, but as is always the case when I wake on my own after sleeping on my back, both arms shook for several minutes. That never happens if someone else wakes me or it I’m jarred back to waking reality by an alarm, only when I wake on my own. Weird.

The evening stroll was equally triumphant. Regards walking, I’m on a roll. Roman has been telling everyone that next week we will walk all the way to Piazza Cahen. We shall see. He’s usually right.

On the other hand, muscles have continued to be tight most of the day; not painfully so, just distracting. And on the third hand, my spirits are high and I continue to feel unusually smart. (Watch out!)

Saturday, October 16

Today is a market day, and there was a chill breeze, so we opted for walking Via del Duomo again. When we arrived at Marino Moretti’s studio at about 10:45, there were very few people on the Via. When we started our second circuit a few minutes later, it was rather crowded, and by the time we finished it was mobbed. Hence, what began as another triumph was gradually eroded until at the very last my steps were in a high state of confusion. Lots of people scatters my calm and concentration, both of which are needed to walk really well at this point. So a short nap followed immediately, and because it was short, it refreshed.

Muscles are less tight than they were yesterday.

A series of short naps followed lunch, naps so satisfying that at each iteration of the alarm I was amazed that 23 minutes had already elapsed. And the big discovery was that I could nap for a bit more than an hour in 23 minute chunks without waking up a zombie.

A theatre in Tampa has expressed interest in one of my plays. It is one I last looked at three years ago, and since I have a Zoom meeting with them tomorrow, I thought I should read it beforehand. Well, let’s just say I seem to have learned a lot in the three years since. They want to develop the play and that’s a good thing.

Our evening walk to San Giovenale went well, but I wore out at the end. Still, it was without any breaks, and much of it was cat-like.

Sunday, October 17

Once again I slept soundly getting up only once around 03:30.

The morning walk was complicated. We tried Via delle Costituente first, but although initially empty it quickly filled up with crowds that stood around rather than walked. Valerie had joined us at Bar Sant’Andrea, so Roman suggested we walk to the Duomo for a few laps on the sagrato. Via del Duomo was already packed, Valerie is shorter than Roman, and it meant starting my walk on a long, uphill grade (however slight), so while the walk was not a disaster, I never really found a rhythm or pace. Then we paced the sagrato, some with Valerie, some with Roman, for another six laps and wheeled home via Bar Brozzi (which despite the thick crowds was completely free of customers).

For my fellow travelers; restless leg syndrome has once again all but disappeared. Either it’s a PD symptom that has gone away (at least for now) or it is finally responding to the calcium/magnesium citrate supplement that I’ve been taking at lunch and bedtime. A reluctant swallow reflex has returned in small measure; present but not nearly to the degree of several months ago. My legs are generally stronger than they have been in well over a year. And for today at least, typing is smooth and largely accurate (or was until this sentence!) Two steps forward and one step back is real, just remember that the step gained is also real.

Monday, October 18

Our morning walk on il sagrato was embellished by the presence of 22 sports cars: Lamborghini, Ferrari, Porsche, and one Austin Martin. Not in my wildest dreams can I imagine having (or even driving) such an automobile, but I have to admit that they are beautiful creations. And they made the ten almost perfect laps (one full kilometer) race by like one of those magnificent machines on the autostrada.

My afternoon naps are getting shorter as my walks grow longer. I got a little peckish around 4:30 this afternoon, and felt more symptomatic than I’ve felt in weeks, so Susan fixed me a peanut butter and jelly (actually jam) sandwich and within twenty minutes I was restored. Roman calls a P&J la merenda Americana.

We walked Costituente, also a full kilometer. That posture was good and my gait relatively shuffle-free is hardly worth mentioning anymore, it is almost automatic.