Author: dallanz

Tuesday, June 21

I went to bed around midnight and, faced with a sensation of balancing on the edge of a crater (which, with this mattress is accurate) was up at 03:30. No surprise, really, as I slept so much yesterday, and all of it sweet beyond description.

My dream before I woke yesterday morning was interesting. I have a recurring dream of having forgotten to check out of a hotel and not discovering it until the bill has become astronomically high. Yesterday’s variation was that I had checked myself in to take a nap, and when I finally found someone to pay for the privilege, they wouldn’t take my money. Oooo! What does it all mean?

I returned to the lunar landscape of my mattress at around 04:30 and slept like a baby for five hours.

We walked the sagrato with difficulty, however around the house there were lots of little things that were easier today than yesterday: shifting weight, adjust feet positions, initiating movement. Friend reminds me that our connection is as real as we make it, in the way that many of us talk with deceased loved ones, but that I must try to commune with love and joy rather than as a means of activating the striatum.

The discomfort gauge is on the high side, today, not terrible but just enough to make me weary when I wish for a quick resolution. Janice frequently says that recovery is hard for most people, but the hundreds that she has seen recover affirm that the difficulty is easily worth it. Hang in there.

Wednesday, June 22

Today is a clear example of the difference between a good mood and an open heart. A mood can be mental and can disguise a frightened heart. An open heart is a way of being. A breeze through the heart can be the harbinger of recovery, a good mood is much less likely to be so. Today I woke with an breezy heart which also happened to spawn a good mood. The heart has given me a genuinely happy day and the confidence in recovery that determines itself. This is not the first time this has happened, but it is the first time I have noticed how this state is distinct from mood.

I slept soundly and happily again last night and napped in the same manner this afternoon.

Thursday, June 23

I slept nine hours without getting up, and could hardly wait to get home after the morning walk so I could nap. I napped most of the afternoon.

I’ve had some insights as to what is going on in my brain, but before I attempt to put them into words, here is some excerpted text from Stuck on Pause by Janice Hadlock. I hope this will help what I am trying to say be more available to those who have not read any of the Parkinson’s Recovery Project’s literature.

“A neurological mode is a specific combination of certain motor (muscle movement) behaviors, stomach, intestinal, and digestive behaviors, neurotransmitter releases or release-inhibitions in the body and/or the brain, and highly specific mental behaviors. The physiological conditions of a living system have ever-changing physical and/or emotional needs that can vary from one second to the next. They are reflected in the ever-changing ratio of one neurological mode’s usage amount relative to another’s.

“Western medicine only recognizes two modes: parasympathetic and sympathetic. Parasympathetic mode activates the physical and mental behaviors of playful curiosity and healthy digestion. (This is a gross oversimplification, but gives us a starting point.) This mode activates the release of dopamine in specific areas of the mid-brain. Dopamine is a neuron (brain cell) stimulator (neurotransmitter), used in various parts of the brain for various purposes. In parasympathetic mode, dopamine is released from the brain’s substantia nigra, in response to instructions from the nearby striatum. The substantia nigra and striatum are both located along the midline of the brain, in very nearly the exact center of the brain. The striatum can signal for release of midbrain dopamine for motor function in anticipation of playful, joyful, unself-conscious mood and movement.

“Dopamine has many functions in the brain. In the mid-brain, dopamine is the ‘feel good’ and ‘effortless movement’ neurotransmitter. However, on the sides of the brain, dopamine is the neurotransmitter for anxiety, wariness, and risk assessment. Healthy people, when awake, are always using a blend of parasympathetic mode and sympathetic mode. When use of parasympathetic mode decreases, dopamine release for midbrain-directed motor function decreases. If one is awake and moving more into sympathetic mode or lurching into pause mode – moving away from parasympathetic mode – one might have an increase in dopamine release in areas on the sides of the brain. Again, dopamine in these areas can activate negative-mood responses, such as anxiety, wariness, or risk assessment. In people on pause, midbrain dopamine release for movement and feeling good is severely inhibited. In people on pause, dopamine release on the sides of the brain for risk assessment is greatly increased. (see footnote)

“Muscles can be activated using either parasympathetic mode’s mid-brain, striatal dopamine system or via the brain chemistry of sympathetic mode. Sympathetic mode powers the “fight or flight” response. To the degree that use of sympathetic mode is increased, adrenaline release is increased and the striatum’s midbrain instruction for dopamine release for carefree muscle movement is correspondingly decreased. Other brain molecules also play a part in sympathetic mode, but I’m keeping it simple.

“Almost all people, when they are awake, are using a blend of these two modes: parasympathetic and sympathetic. The more content a person is, the more he is using parasympathetic mode for movement, thoughts, and sensory awareness. The more stressed he is, the more he is using the sympathetic mode chemistries for movement, thought, and sensory assessment. Again, nearly all people, when awake, are always using a blend of the two modes: a blend of drivers for motor function, a blend of thoughts, and a blend of types of sensory awareness and assessments. For example, a person driving a car while eating is using the alert intensity of sympathetic mode and the digestive behaviors of parasympathetic mode.

“Chinese medicine, for more than a thousand years, has recognized that there are four neurological modes. The third mode, sleep, allows us to lose consciousness and become fairly motionless. In this mode, dopamine release in the brain and adrenaline release from the adrenal glands are both highly inhibited.

“The fourth mode, pause mode, allows us to be somewhat physically and emotionally numb in response to a life-threatening injury or trauma. In this mode, the release of both dopamine (in the brain area for motor function) and adrenaline from the adrenal gland is inhibited. Dopamine release for risk assessment is increased. If motor function is necessary in spite of the body being dangerously damaged, the brain can release norepinephrine, another neurotransmitter (known as noradrenaline, in the UK). Norepinephrine makes possible emergency use of hyper-powerful motor function. This type of motor function is not spontaneous and flowing from the imagination, like that driven by dopamine. Instead, norepinephrine drives super-powerful motor function in response to mind- or instinct-based commands.”

Footnote, June 23

“Personality traits and brain dopaminergic function in Parkinson’s disease”; Proceedings of the National Academy of Sciences USA 98:13272-7; Valtteri Kaasinen, MD, PhD et al; 2001.

“This 2001 study describes the utterly unexpected discovery that people with idiopathic Parkinson’s disease (PD), which is a manifestation of pause mode, have elevated levels of dopamine activity in the brain’s anterior cingulate area, an area that is involved in risk assessment.

“Since the 1970s, Parkinson’s disease researchers assumed that dopamine levels in the brains of people with Parkinson’s should be pathologically low across the brain’s board. This wrong conclusion grew out of the observations that people with PD had increased motor function when they were given brain-swamping levels of dopamine-elevating drugs. It turns out, people with PD have more than enough dopamine – but their brain’s release of dopamine for motor function is inhibited because they are stuck on pause mode. Even though dopamine release for motor function is inhibited while on pause, dopamine release in some other brain areas is increased. For example, in people with Parkinson’s, their dopamine levels in the risk assessment area of their brains are at higher levels than is seen in healthy people, while dopamine levels in their midbrain for motor function are lower than normal or very nearly turned off.” 

Friday, June 24

I slept through from midnight to 10:00 with only an hour break at 03:00, all of it blissfully sweet.

Last night, as I often do, I asked Friend if I am stuck on pause mode, and received a typical “no”. I then asked if I used pause mode as a way of dealing with emotional stress, and as usual received another “no”. Then I changed the question to ask if I go in and out of pause as a habit, like one would with substance abuse, and was given a “yes”. 

In her writing, Janice discusses how what begins as discomfort can expand to a dark mood, that flips the experience into symptom-rich pause. She also says… (this is strange and has happened before, but the next thought formed and as I try to give it words, it remains stubbornly inexpressible. It’s as if the thought were locked away and some element of my personality steals the key just as I place it in the lock. Trying again…) She also says that the brain channels we use most regularly are those most likely to attract us, that if I regularly go in and out of pause, that habit will override the open heart if I let it. That’s still not quite what I need to say, but will have to do for now. Either way, my fate is in my own hands. Whether or not I am symptomatic is a function of choice. That is enormously hopeful but also gives rise to a visceral fear. I can exit this cycle if I am strong, but what if I am not? And there is the switch right there – fear opens the way to pause.

Saturday, June 25

Janice has personally told me many times and has written it in her books; the symptomatic habits (mind grooves) don’t go away, we just choose, minute to minute to open the heart fearlessly and create new symptom-free habits. It finally makes sense. That is what I have been trying to put into words. Simple. But it takes awareness, focus, and persistence. 

I applied this principle to walking this evening; adoring Natalia’s tough love instructions, relaxing the wariness and fear, and gradually my gait improved. It’s that, only all the time, repeatedly, and with everything.

Sunday, June 26

I feel I’m moving slowly today, not because it is a symptom, but because I don’t want to break the delicate thread that runs through my heart. I’ve been looking at everything backwards. Those days when I feel an inner clarity I’ve been viewing as a bonus to symptomatic recovery. In fact, the inner clarity is the point, not necessarily the number of laps I manage to do. Carrying that clarity is a relatively simple adjustment, and is the way of recovery, but it takes constant monitoring and great care in not letting symptoms distract or infuriate. It also means dropping impatience and fear.

Walked well, slept well.

Monday, June 27

Recovery! Hello, I’m David, and I am addicted to pause mode. Recovery. I get it. Finally.

Today the heart connection was like a wavering candle. Walking was okay, all unassisted but a bit heavy. Sleep was good but insufficient. Typing, above average. The new mattress arrived today. Roman found a tag on the one I bought two years ago that showed a manufacture date in 2002. Mattress technology has improved since then.

Tuesday, June 14

I slept an hour or so, woke and was awake until 07:00, hassling temperatures and trying to find a comfortable position. Janice puzzled that I seem to be avoiding recovery.

So, I asked Friend why I’m afraid to recover and got a rather long and indirect answer. This is the short version, from his point of view: “You (me) deserve to recover, your work deserves to be produced and shared and published, you still have much to do. But it’s not all about you. You want to thank your friends who offer so much support, there is no thanks better than recovery. And recovery is to admit that you can do nothing by yourself, everything is about the web.” (The bit about my work is a response to a mental habit I have of thinking that I’m too old to hang my hat on a professional peg; the same mental habit I was deflated by at the age of 25, 32, 44, 51, and 65. Probably other years, too.)

The day that followed was marked by difficulty walking, rising, sitting, and typing. I remained in a good mood throughout, but enjoyed little comfort. A short nap before lunch was delicious, but otherwise attempts were soon greeted by restless leg syndrome and trembling each time I traded deep snooze for something lighter. Friend says it is all about the brain looking for balance.

Wednesday, June 15

Another night like last, very little sleep, pacing the hall for long periods, hassling temperature, little comfort. Lots of swearing. However, walking, turning, and rising were all improved during my relentless pacing.

This morning’s was the worst session walking the garage ever (or at least for a long time). An hour nap in the recliner left me shaky, frozen, and with something resembling nausea. Chest tight, mouth twitchy, feeling awful, and for the first time afraid to be alone. Friend says it’s brain recalibration. Have never felt worse that I can remember.

Then Monika arrived to give me a lesson in Alexander Technique, and bit by bit we deconstructed the mental habits and physical locks that were making me miserable. And I realized that I resist help and treatment, that I cheer for the bad guys. That I relish every imagined “proof” that the disease is getting worse and is rendering me disabled.

I’ve suspected this for awhile now, but today’s lesson gave me the real proof that the official propaganda of “degenerative” and “incurable” is the first mental habit to release – and the most insidiously clinging – that those of us in recovery have to face. And this is all somehow woven together with my father’s PD in that since he suffered who am I to do otherwise? So each notion of worsening symptoms is embraced as a demonstration of my love; that I am willing to suffer as he did, and that even as in so many other ways I may have disappointed him, in this we can exercise solidarity.

Monika (and Janice) also advise embracing rather than resisting how I feel, accepting it as a way of remaining in the present, which is the only place that healing can happen.

Then I took a fifty minute nap in the recliner and woke feeling mentally clear but physically awful; nothing new, the same stuff as earlier, just without the anger. For now.

Thursday, June 16

Got to bed around midnight, slept until 03:30, then spend a sleepy 90 minutes opening windows to create a draft and waiting for the temperature to fall (for some reason the a/c stopped being effective). Thereafter, I remember being aware of Roman in the room, but had no awareness of his trying to wake me. He later told me that he tried five or six times but I would just roll over and continue sleeping. He finally decided that I must have needed the extra sleep and let me be.

I woke some hours later and tried to roll over to look at the clock. I couldn’t do it. I called for Roman. No response. After struggling for awhile I got up on all fours and managed to sit on the edge of the bed, but it was a heart pounding, sweat inducing workout. After a few minutes I was able to rise and walk to the bathroom. Then I called Roman on the phone who had taken advantage of my unconsciousness to run an errand. It was only then that I noticed the clock; a few minutes shy of noon!

Roman was right not to wake me, I had become dangerously tired. But after breakfast (at noon) and a wash and change of clothes, I napped in the recliner for almost an hour.

It is tempting to indulge in a freakout. Friend is constantly warning against it. The brain, he says, wants to maintain the status quo, and is overreacting in its efforts. I tried to do the habit-changing exercises that Janice recommends in Stuck on Pause, but fell a bit short. The habit I want changed is pushing away love (or you could call it “undermining my every effort”) from the false assumption that love (or success) is not safe. Love is the only safe thing there is. If the brain craves safety, and it does, there is no safer refuge than in the heart. I’ll keep trying. 

I paced the hall a bunch, had lunch and finished watching a movie. 

By mid-afternoon, I was uncomfortable everywhere, and continued to feel bad regardless of my state of mind, though not falling into fear made it all more bearable.

My former neighbors threw a party for me in my former garden. Roman helped organize it, Renzo made sure everyone showed and made a fig and walnut crostata. An amazing number of plants managed to survive the summer of 2019 when I was forced to abandon the garden, and Lavinia, who lives there now, has done wonderful things. It was so good to see everyone. The street won awards for most beautiful, as it always does, and always deserves.

Walking, standing, sitting continues to be difficult, which makes me both angry and sad.

Friday, June 16

I blew up yesterday, frustrated with my physical state, and Roman happened to be there. “There is no utility in anger,” he warned. He’s right. Acceptance is an important part of healing and anger arises from denial.

I slept three and a half hours in bed last night, followed by 90 minutes pacing, one hour in the recliner, another hour pacing, and an hour in the recliner. The shaking as I’m waking phenomenon has spread to shaking for many minutes after I get up (even my tongue and lips vibrate), and RLS didn’t leave me much peace in the recliner. In less than a week, I’ve gone from being on the verge of sprinting to rapidly increasing poverty of movement. Friend quotes the Parkinson’s Recovery pioneers (“I don’t know what’s going on but it sure ain’t Parkinson’s”) because, unlike PD, the symptoms change constantly, and I hope he’s right.

I napped quite a lot in the recliner and paced quite a lot in between. Muscles are weird and tight. Walking the sagrato was a complete shambles, a flashback to almost a year ago just after two weeks in hospital for broken ribs – only no hospital, ribs, or atrophied muscles.

The evening walk on the sagrato was much better, and despite my naps, it wore me out. A light supper of mozzarella and tomato triggered a ten minute episode of sneezing and nose blowing. I have no idea why. I feel lighter tonight than I have felt in awhile, and while current symptoms continue to branch into interesting varieties, my relationship with Friend becomes more constant and that keeps me happy. Tonight is Corteo delle Dame which I am sorry to miss. Next year.

Saturday, June 18

I went to bed at midnight, slept well for an hour and a half, then felt the need to get up. Like on Thursday, I could barely claw my way out of bed, gasping and shaking. Once up, I asked Friend what to do (we’ve become especially close last few days) and he answered, pace until you feel grounded. I found walking (and typing) to be relatively easy, so I paced for two and a half hours, going to bed at four, figuring that would put me close to Roman’s arrival at eight in case of a repeat. I slept for another 90 minutes, needed to get out of bed and repeated the whole thing over except for the pacing. I admit, I am frightened. The recliner gives rise to RLS, and the bed traps me, I don’t know how I will sleep.

Well, I took several pleasant naps during the course of the late morning and early afternoon, and Roman took me to order a new mattress. So steps have been taken.

Sunday, June 19

This morning around three, I suddenly woke and bounded out of bed. I sat on the far edge from where I had slept, half conscious, and convinced for a half hour or more that I was waiting for someone to arrive before I returned to sleep. To my knowledge no one ever did, and I eventually crawled back to my spot and fell into an instant slumber. Natalia woke me about five hours later. I was groggy and not ready to get up even after eight hours, but she convinced me that we needed to be outdoors before the heat arrived, so I acquiesced. Once up, I noticed that I felt great even though I could hardly walk.

We went first to the garage where I proved that I could hardly walk. That effort was quickly abandoned, and Natalia wheeled me into town. Perhaps she had told me of her plan – I thought we were just going for a spremuta (fresh orange juice) – but after the juice we continued to snoop around for places in the shade, and I realized that she was setting us up for Corteo Storico, the male costume parade in celebration of Corpus Domini. We found a spot across from Montanucci, and parked the chair.

For the next hour we watched a modern corteo pass on the street, featuring costumes of a daily sort, many of them quite beautiful. Then the drums and trumpets sounded, and shortly thereafter began another hour of men in doublet and hose carrying weapons and flags representing Orvieto as it was in about 1265. It’s beautifully done, but I prefer Corteo delle Dame, honoring women of the same period. By the end of the parade I was massively uncomfortable and nodding off. But it was lovely of Natalia to have taken me there.

The afternoon was spent napping and pacing the hall. 

Last night I spoke with Ted, a member of the PD Recovery support group who lives outside of Amsterdam. We have been leading parallel lives with regard to recovery; a day of rather startling fluidity followed by several days of better than usual movement, then profound limpness (jello legs, hardly able to walk). We both were thrilled by the former and freaked by the latter, and trading notes was a great help.

This afternoon was marked by several short naps, and with hall pacings in between.

Monday, June 20

I slept nine hours last night with only one short break in the middle. Then I fell asleep waiting for the dentist, in his chair, and right after lunch. After checking messages, I napped more. Our only walk today was an evening on the sagrato, and while it won no prizes, it wasn’t bad.

The lesson for the week is to do the best I can with what I have at the moment, not to frustrate myself by trying to replicate yesterday’s successes.

Giuseppe, my dentist, shook my hand after his work, and held it and squeezed it, and so did two other friends on our way home. I love it here.

Tuesday, June 7

The discomfort underlying the poverty of movement is back, though more lightly than before. This morning’s walk was pretty solid until the sagrato was swamped with about sixty eight-year olds. They were lovely kids, but I don’t take to that much random movement.

But here’s the thing; I feel lousy today, and when I feel this bad, it’s because typical PD symptoms are worse. Difficulty initiating movement, changing direction, finding my mouth when drinking from a glass, tilting my head back, walking in a controlled manner, maintaining posture, so forth. I’ve had episodes when one or more of these seems to be better, but the improvements don’t seem to last.

I ask Friend about Pause quite often, he assures me I am not stuck. Today he pointed to my fall ten months ago. I went into Pause when I fell and felt neither pain nor panic, shook violently in the ambulance, and was – according to Friend – out of Pause by the time I reached the ER. He tells me I’ve not used it since, but have used sympathetic mode for emotional upsets.

Maybe this is Blocker behavior, but when I feel like I have these past couple of days, I wonder if I’m just making stuff up according to what is expected for Recovery.

However, I just found this quote by random search from Janice Hadlock’s book, Recovering from Parkinson’s:

“Recovery symptoms are not a straight line. But to the extent that there is some degree of predictability, one can assume that return of fully normal motor function might be one of the very last things that occur during recovery. What might occur prior to a return of healthy motor function is resumption of nerve sensitivity, spastic, infantile motor function, back pain, heightened sensitivity in nerves that go to the bladder, exhaustion, and very often, an overwhelming, new sensitivity to heart feelings, and so much more.”

Wednesday, June 8

Although sleep was interrupted for two hours by temperature issues, I woke feeling rested and strong. So much so, that on the way out an hour later I felt prompted to report that my legs were much better this morning. No sooner had I said that than my steps turned awkward and I began to shuffle. We did a short walk in the garage so I could save energy for an Alexander lesson at noon, and while there have been worse, none of it lived up to the promise of those morning steps at home.

I slept deliciously well after the lesson, but post nap typing was a cruel joke.

We had a fabulous passeggiata. Walking was not great, but I ran into lots of friends I’d not seen in months.

Janice says I may be resisting Recovery. I think she may be right. Friend says my dreams of Santa Cruz are related to wanting to travel again rather anything therapeutic. I think he may be right. 

Thursday, June 9

Sleep interrupted again by temperature and fresh air issues. That I was stunned probably contributed to an awkward morning walk in the garage. A nap made things worse, so I took another nap after lunch and woke barely able to move, but otherwise quite happy.

The rest of the day was a blur of mixed signals.

There was one ahah! moment during the evening walk. I’ve been trying to force the striatum to wake up, when it really is a matter of letting go

Friday, June 10

I slept well until 04:30 then not again. The nightclothes I have are either too thin or too heavy for the 23 degree internal temperature, plus I was energized until about 07:30 at which point it was useless to try again for sleep. But something good happened overnight. Everything this morning was easier, more fluid, not by a little, by a lot. We walked the garage, and I went solo on the first lap, a breeze flowing through my heart. And this after two weeks of very difficult movement. I felt so lacking in fear that I almost wept.

Then after being home, napping (much needed) and so forth, I felt the heart return to “normal” and getting around the apartment lacked this morning’s several hours of surety, so I don’t know what to expect this evening.

Waiting for the evening walk, I became restless again, as I felt this morning; an eagerness to move. But, the evening walk, while better than it has been these past weeks, lacked the heart/pericardium energy that was so present this morning, which seems to have arrived on its own, and I don’t know how to call it back. Regardless, it is a good sign and presumably will happen again.

Saturday, June 11

I spent a large chunk of time last night (from about 03:00 to about 06:00) trying to find a comfortable position for sleep, only to rediscover that if I simply threw myself onto the bed in whatever position I landed that I was asleep in minutes. So by the time Roman woke me I had had about six and a half hours, total, a respectable rest in my world. But I kept falling asleep, eyes open and in the midst of activity as if I had just finished a twenty-hour journey from New York. So, after getting ready for a walk, we agreed that it would be better for me to sleep, and I did. In the recliner for two hours, then lunch and an hour more. Interesting though, I felt good the whole morning, I just couldn’t move. And I had flashes of heart energy that did not give rise to mobility, but were powerful just the same.

The evening walk in the garage was better than I expected it to be. I had what may have been an insight, however; the heart energy that took me over the top yesterday morning was pure unattached love. Love for creatures and place is great and important, but the breeze moving through my heart is what will cleanse me and make me well, and that knows no object.

Sunday, June 12

A good morning walk in the garage. Then Natalia wheeled me into town to look at the hundred or so vintage Fiat 500’s gathered in Piazza del Duomo. All that and the lulling effects of wheels on cobblestones meant that I could not nap soon enough once home. And except for the actual sleeping, I’m very uncomfortable today. Last night I woke at 03:10 feeling like my body weighed a ton. I got up walked a bit, including a series of quick meditations, went back to bed and slept well for five hours, feeling light and relatively normal when I turned over, only to return to lead once on my feet. It’s often like that. I don’t know why.

This afternoon the city joined Museo Claudio Faina to offer the Ukrainian community a free guided tour followed by a lecture and a fabulous finger food buffet provided by Bar Montanucci. I was invited too, wearing the traditional Ukrainian shirt Roman gave me for Christmas as a disguise. Everyone was so kind.

I came home to a message from Ted of the Parkinson’s recovery support group reporting that on Friday he had several hours of freedom from symptoms, and enjoyed more fluidity of movement than he has had for a long time. Rejoice!

Monday, June 13

It was a good walk on the sagrato this morning. Then I took a recliner nap after lunch. When I wake on my own I tremble, full-body now, for about thirty seconds. Waking from a nap is seldom a clean break with sleep, so it is a series of trembles – rather tiresome. And afterwards I feel utterly helpless; walking is hard, typing very unpleasant. Today it took about an hour to claw my way back to semi-comfortable.

The evening walk was a struggle, but there were two or three laps (of seven) that hit upon something worthwhile.

I want to let go of this tension… call that surrender, opening the heart, taking off the rotting jacket, dropping the old habit, or what you will… it’s what I need to do.

Wednesday, June 1

A few of our favorite cats were let roam the piazza this morning – always a treat. The one we call Il Sindaco (the mayor) put in an appearance for the first time in weeks. Rumor is that he has been on a much-needed vacation at Lago di Bolsena. This has not been independently confirmed.

My walking was okay, quite a bit of it on was my own. An Alexander lesson followed. The big discovery there was that after having attained a nicely relaxed state, all the tension will reappear after a few words spoken aloud.

Our evening on the sagrato was accompanied by what seemed like a girls’ gymnastics team; ten year olds doing cartwheels, and handstands, and backbends. I, on the sagrato’s other end, tried semi-successfully to walk on my own with a minimum of scraping shoe sounds.

I’m tired of my routine, tonight. It’s about 20:30 which means a movie plus an episode of “Rita” (“Rita” is a Danish series set in a public school. Almost everyone is so blonde it hurts, but the writing and acting are good.) Most of the movies (previously unknown to me) have been good, too, but when they are not, they are horrible. Fortunately, I’ve learned to spot the bad ones pretty quickly. But what I really want to do is to join friends for an aperativo, followed by a light dinner and a concert. Then to round things off with a slow stroll home at midnight. This evening I feel like that will never happen again, and it makes me sad. I need an events buddy who can mobility assist at least once a week.

Thursday, June 2

Today was a holiday honoring Italy’s decision to drop the monarchy and become a republic, and Orvieto was filled with visitors, even on the quiet side of the Duomo’s sagrato. It was also the first day that I noticed the Piazza’s strong and summery evening wind. For most of my walk these elements were threatening distractions. Then the next to the last of I don’t know how many laps (quite a few) something shifted internally and I found a fearlessness and strength that I had previously tried to fake, made real. The change was subtle, but the gait became quiet and the stride became long, and my arms began to swing. The remaining lap was difficult because the many laps we did had made my legs tired, but I know now what to aim for.

Friday, June 3

I emphasize walking and typing in these reports because that is what I miss most, but there are many other interior changes going on that may be more important. For example, I am less impatient, less self-absorbed, less arrogant, and more generous with my appreciation. I am more connected to children, more relaxed about affection, more aware of beauty without wanting to own it, more grateful. Less fearful. 

Walking today did not meet yesterday’s promise, but I did put in forty minutes pacing the hall at home and in pretty good form. I was woken by a cough that, with accompanying nasal discharge, kept me awake last night for over two hours, and the morning walk never really woke me up. So, I have mixed feelings about the day. I found out that my long-time feline pal, Tito, who lived next door to where I am now, died this past winter at the age of fifteen, so I don’t have to listen for his very loud and insistent cry every time I leave the house. But I will, anyhow. I am deeply grateful that we got to say goodbye, in my lap (for the first time, thanks to the wheelchair) with purrs, last December. And that – said my lovely neighbor who answered my question about Tito’s whereabouts – is life.

Saturday, June 4

I slept well but woke wanting more. My first impression upon rising was that today would be good for movement, then bit by bit it was as if my brain reconstructed the disease – and made it worse – just to punish me for my optimism. Walking was hard. Drinking from a glass was hard. Changing directions was super hard. Blowing my nose, sitting, and rising – all were hard. Then after the walk I slept in the recliner for an hour and a half as if I had slept not at all last night. (But I did seem to have discovered the right angle of incline to discourage restless leg syndrome.) Still, after lunch, sitting was uncomfortable enough to propel me into pacing the hall to oil the muscles, and it did help.

My dear friend Erika writes that she dreamt (or had a vision) of me walking alone on Corso, and that that was my future. Her timing is perfect, and keeps the day from slipping into despair.

The evening was one for the spirit. Walking in the garage was a great escape from the heat, then Natalia took me to four of the many exhibits of the first Orvieto in Fiore since 2019. The first floral mosaic we saw was in Sant’Andrea – an image of Saint Francis embracing a figure wearing a surgical mask. I burst into tears. Kudos to the young designers from Liceo artistico.

By bedtime, even though movement had not improved, the terrible discomfort that accompanies poverty of movement was gone. Tomorrow is, after all, another day.

Sunday, June 5

The discomfort is still on vacation as of early evening. Walking the garage this morning was good. Typing is a struggle, but has been worse. Movement after a long post-lunch nap in the recliner was poverty-stricken indeed, but some pacing and qigong helped.

Allowing the heat outdoors to calm, we left the apartment later than usual and walked the welcome coolness of the garage. Natalia has constructed a beach there for me to imagine, complete with a rowboat made of old wood. Early in our walk she stopped me. “This is a disease of the brain. The brain is plastic, you can teach it to be different. So teach it healthy habits.”

Something tells me that the PD is actually gone, and what I am dealing with now is reconstruction. Another part of me says I’m a damn fool for thinking that. My Friend tells me to follow my bliss.

Monday, June 6

I woke up on my own this morning, and felt more energetic than I have in months, if not years. I got up from the far side of the bed with little effort and sat waiting for Roman, amazed at my strength and agility. By the time we left for the morning walk forty minutes later I was stiff and wobbly. The walk was pretty good but difficult and the next half hour of errands and partaking of morning beverage exhausted me. Once alone after lunch I felt stiffer and less mobile than I have felt in months, if not years.

What is going on? My Friend repeated last night’s advice; follow your bliss.

A nap helped energy a bit, but was constantly interrupted by a fly’s landing on my nose.

Come evening, I had an appointment at my dentist’s for a cleaning. On the way back we stopped at Via delle Costituente where we have had many successful walks this spring. I could barely move. 

Now, here’s the thing; I am convinced that the approach The Parkinson’s Recovery Project takes is valid and effective, but I am not convinced that I can follow it alone – without personal and professional guidance. So, lately I’ve been dreaming of somehow returning to Santa Cruz, where the Project is based, to pursue in person treatments with Janice or one of her colleagues. I was dreaming of strolling the beach at Twin Lakes on our way back from Piazza del Popolo when we passed a woman with words of gold emblazoned on her t-shirt: “Follow Your Dreams, they are always right”. In English. We turned onto Corso Cavour to refresh ourselves at my favorite gelateria, but the only table not filled was one with a fellow named Fernando sitting at it, so we asked if he would share.

I’ve said hello to Fernando when we pass for three or four years now, but we have never had a conversation. I asked him where he was from. “Rome, Los Angeles, Santa Cruz…” When in Santa Cruz? “Nineteen seventy four through eight.” He majored in economics and art history at UCSC, and one of his art professors was my landlord.

A journey to Santa Cruz would be complex to plan and daunting to make, and may only seem necessary when I feel as I do tonight. But who knows? There might be someone up for a two-month house swap, house sit, or rental. And maybe Roman would see it as an exotic vacation. Puttin’ it out there!

Tuesday, May 24

The feet hurt (callouses and corns) and little else of any note happened that I can remember. Except! I was drawn toward medical qigong for my left foot, which re-associates old injuries that never fully healed. For lack of a stronger description, the foot immediately felt more present.

Wednesday, May 25

Maria Rosaria did her magic on my feet, sculpting them and removing a handful of dead skin and tissue. The evening walk was therefore much improved; first lap ugly, second lap less so, third lap not bad. All day I felt that I was divided in two, though I can’t identify what those parts might be. Whenever I checked in with Friends, instead of partying they were meditating. I did my best to adjust.

Thursday, May 26

The morning began dual, but that sensation faded as the day progressed. The left foot hurts because of the qigong, but in a good and not incapacitating way. Morning walk was a repeat of yesterday’s three-part special. The evening walk began the same way but on the fourth lap I went solo, and the walk got smoother and stronger for five more laps, all of them unassisted! I was exhilarated. Friends continued to meditate. 

Friday, May 27

I slept a straight eight, and Roman still had difficulty waking me. The morning walk went five laps (two unassisted) and could have gone more, but we ran out of time. I paced the hall during the afternoon, and my gait was solid. But the walk to Roy’s car – and from there to the Alexander studio (and back) – was tortured. The lesson itself was wonderful (and free of restless leg syndrome, for maybe the first time) but was nearly nullified by the getting home. The evening grew fresh after a heavy-aired, humid day, and windows were thrown open to welcome the breeze.

Saturday, May 28

Morning on the (north) sagrato saw us do six laps, half of those unassisted. There were rivers of colorful tourists everywhere, flowing through the piazza and into the cathedral. I particularly enjoy those who exchange greetings with us, believing as they do that they have interacted with a real Italian. Takes me back to my traveling days.

I slept a straight six last night, not turning in until late as I waited for the air to cool. I had gotten it down to a comfy 20 degrees by midnight, then decided with unwarranted generosity to share the air with other rooms by opening doors. That foolishness will not be repeated. But, making good use of the time, I put in at least a kilometer pacing the hall while I waited. The walking improved, the turns and suspensions of movement did not.

Come evening, we paced the garage because of threatening rain. I’ve been fighting discouragement all day (as I do about once a week) and the quality of my walk this evening caused me to lose the fight. (A bit of lemon gelato helped.)

Sunday, May 29

Slept another straight eight last night, did five laps on the sunny side of the Duomo due to first communicants on the shady side, napped before lunch, after lunch, and again an hour or so later. Mobility is nil right after sleeping, but improves with use. Dexterity is rather astonishingly good. 

A wonderful exchange during the Zoom meeting of the Recovering from Parkinson’s support group led to my increased confidence that the path we are taking is ultimately effective. The evening walk right afterwards included a healthy sway, swinging arms, and a confident stride while holding on to no one. 

Monday, May 30

The morning walk on the sagrato reflected last evening’s, but with more of it unassisted. I slept well last night but with an hour’s gap, and due to work on the little balcony off the bedroom had to be up before eight, so perhaps that’s why after our walk I collapsed into the recliner for an hour’s nap (my first of three). Naps in the recliner of late are characterized by stabbing pains in feet and toes which trigger episodes of violent shaking. There is some occasional shaking in bed, but nothing as extreme or frequent. None of this is new, rather a new wave.

I noted last week that I’m experiencing hunger again, and double that for this week. Also, the jasmine is in bloom (and is everywhere) and yesterday evening I got a whiff of it for the first time in decades. And for this evening’s walk, much of the time my gait was automatic — such pleasure from such simple things.

Tuesday, Wednesday, Thursday, May 17 – 19

Walking was difficult all three days, improved a little on Thursday. Likewise with typing. Wednesday, by the way, we stopped at Bar Sant’Andrea with Erika and Michelle and joined an expat group that included several favorite friends. But the conversation was laced with how important health was, and each reference caused me to decline. No fault of theirs, but my reaction was recognizably self-conscious and the result predictably symptomatic. 

Friday, May 20

Walking continues difficult, but it is increasingly necessary. I paced the hall for an hour yesterday afternoon until it was pretty fluid, but put on shoes and take them outdoors onto a cobbled street, and it turns into an exercise in terror. Then I paced again for an hour yesterday before bed, hoping to secure a full night’s sleep – no dice. I slept four hours, then was up for three before I finished it off with 90 minutes in the recliner. Then, shoes on and onto the sagrato, it was shuffling and jerks for two rounds, but finished with a surprise third that was “much, much better” according to Roman.

My Friends keep telling me to get out of the way of recovery, and mixed in with that I see an almost lifetime habit of feeling unworthy. So, a mantra arose; I am worthy of complete recovery. It, and variations, repeated during pacing last night and today, gave me a thrill and made me feel grounded. 

Saturday, May 21

I woke at 04:30 and once up for water, could not rediscover the comfortable spot in bed that had satisfied me for four hours of delicious sleep. So, I paced. For an hour. And after a few minutes was walking well; not perfectly but easily and enjoyably. But every attempt to return to bed in comfort failed. At 06:30 I gave up and used the recliner. An hour later RLS set in, and shortly after that general shaking, but I somehow slept through it all until 09:15.

Having paced the hall so happily, I expected a good walk on the sagrato. Nope. A horrible walk; hunched and shuffling and difficult. By the time I met Ida for coffee, I was a trembling, inarticulate mess. I returned home to the recliner with results similar to this morning’s.

For the first time I can remember we gave up on the evening walk almost immediately. For one, the corn on my little toe was very painful, but we also experimented with a site and time of day that didn’t work out. My mood was improved by watching two dogs fall in love, but as soon as we returned home, I collapsed into the recliner for a late, long nap. There might be hell to pay tonight… and maybe not.

Sunday, May 22

I didn’t really sleep until four, but once I did, it was a solid five and a half hours. Walking outside has been a challenge all day, while I spent at least two hours, cumulative, pacing the hall in fairly good form. Part of the difference is due to painful corns and callouses, made more so by shoes or sandals.

I seem to have regained the Recovery symptom of sleeping a lot. Also the limp period between 11 and 13 is back, and was so profound today that I wondered if I wasn’t actually paralyzed. Nope – 13:30 arrived and I was no longer averse to movement, just slow as a drunken turtle. 

Monday, May 23

The brain, says Janice of The Parkinson’s Recovery Project, is by nature conservative. When there are significant changes in neural circuitry, the brain’s job is to return the system to the status quo, to stabilize. Okay, I get it. Do your job, brain, and let me move.

A key element of Recovery is to replace the ever-present inner monolog (which can often be negative and grounded in destructive habit) with a dialog with an “invisible friend”. It is suggested that the Friend be someone who is physically departed, but still close to the heart and fun to be with. My Friends have come and gone over the past year and a quarter, and I had settled on one full time Friend bolstered by guest appearances from a couple of others. Then two weeks ago a chum more recently passed came knocking at my door, and it wasn’t long before I let her in. My two Friends never met in life, but (however it works) they have now, and they are having a wonderfully theatrical time of it! Whenever I check, I’m greeted by a burst of color and laughter and song. “What’s up?” I ask. “We’re celebrating your recovery,” they reply. I hope they know of what they speak.

Free Bonus!

From one of Janice’s recent letters, quoted here with her permission:

“Recovery is crazy, it is not a straight line, but at some point, as we start to have good movement instead of bad, we have to admit the ‘degenerative’ nature of PD seems to have turned around.

Your report, esp on [last] Saturday, really tells the story: you’re having various good behaviors that you haven’t had in years.

It’s all very interesting. It isn’t as if bad symptoms slowly, steadily change into good ones. When they are bad, they are still bad, and when they are good, they are glorious.

This has to do with the brain behaviors. When the mind goes into negative past thinking patterns all the brain links for pause-mode movements might be activated. When the brain is in the new, ‘I’m safe’ way of thinking, movement might be great, even though there are recovery symptoms due to weak muscles and dormant nerves.

What really changes, really, is the amount of time one is spending with the positive mindset. That determines how much time is spent with ‘good’ movement and with recovery symptoms, which are actually good, a form of healing.”

Tuesday, May 3

My right calf was much stronger and pain-free for the first hour after rising, but by the time we reached the sagrato, it was tired and achy. After lunch I slept for three hours. The evening walk around Torre del Moro was magical; filled with friends and well-wishing. Then on the way to Blue Bar, and just past the Torre, it showered while sun lit the raindrops. We stopped at the gelateria and watched, stunned by the beauty of it all. It was a very local rain, just between La Torre and Piazza della Repubblica, which only added to its magic. An hour at Blue Bar with very special friends and home.

Who cares about an aching leg when surrounded by such beauty? Oh, by the way, my doctor came over this morning and gave me stuff for the leg, then we ran into him three times on the street, each time treated like we’d not seen each other for weeks. I slept a lot.

Wednesday, May 4

Leg quite sore, walking a real challenge. I slept a lot. Friend teased and prodded me all day, which kept me out of dark moods.

Thursday, May 5

The cough provoked by trying to speak was persistent all day – very annoying. The leg ached at rest and was very painful when first standing, but by evening it became rather benign. I was able to attend Kansas State’s student architecture exhibit on my own feet with the wheelchair parked outside the main space. It was hard but not so much as to be an impediment. The cough was far more bothersome, and interrupted not only speech itself but word choice as well. My arms were loose much of the day, tightening only when faced with possible pain or physical challenge in some other body parts. I slept a lot.

Friday, May 6

The cough was brought significantly under control by being more regular with using an inhaler my doctor prescribed for the same cough last summer. I walked about half our perambulations in the garage on my own. Even though the right leg still hurt and was a bit swollen, walking was much more fluid than it has been. Katrin, my physical therapist, gave me a late afternoon stretch that was remarkably relaxing, but there was no time afterwards for an evening walk. I slept a lot.

Saturday, May 7

Thirty-four years since my father died – half a lifetime and more.

This morning I woke at 05:30 and padded to the kitchen for some water. I was already back in bed when I realized that my walk was solid, fluid, and involved appropriate upper body movement. So, I got up and paced the hall, enjoying the normalness of it all. The gait was not perfect, but the arms swung in a way I’d forgotten they could, and turning was easy. I went back to sleep confident I could return to that gait during the morning walk. Not quite so simple as all that. Our pacing of the sagrato was better than it has been lately, and I did half of it on my own, but the coordinated magic of my morning trip to the kitchen was barely represented.

Fast forward to evening. Just getting up from my desk I knew things were different. We wheeled to La Torre del Moro to do a circuit around the block, and as soon as we had begun the early morning gait returned. I ended up walking three-quarters of it on my own.

Otherwise, I slept a lot.

Sunday, May 8

We did two circuits of the Torre del Moro this morning, and I walked most of that unassisted. It wasn’t pretty, but to be fair, it wasn’t a shambles, either. But we did eight evening circuits in the garage, all of it unassisted! My sense of balance is stronger which makes walking easier. Upper body response today was not as engaged as yesterday, but movement in general was more solid. Otherwise, I slept a lot.

Monday, May 9

I was hoping to end this week’s report on a triumphant note, after all there was a good setup for it, but instead the day is one step back. In the long view I’m doing okay, but walks today were more or less equal to yesterday with the shine knocked off, my voice was hoarse, and connection with others was labored. I wanted to sleep a lot but couldn’t.

Tuesday, April 19

Today was about pain in the groin. It got so bad that no position was comfortable. My doctor gave me a shot after a “wait and see” period that felt unnecessary, and within an hour the pain began to subside. It never went away, but at least I didn’t terrorize my neighbors with my screaming when the muscles in question spasmed in bed.

Wednesday, April 20

All activities were suspended in deference to groin, only a session in Alexander survived. By all opinions it is a pulled muscle (how it got pulled is a mystery), but to be safe I’m having an eco-doppler on Friday morning.

Thursday, April 21

The small bruise that showed in the fold of my right thigh grew huge overnight, and this morning the swelling had traveled down my leg as far as the knee. I sent medicos photos, and am on course for an eco-doppler to see what is going on.

My dear friend Jeff is here today and tomorrow, and although in a general way that makes everything better, PD symptoms are heavy, made nervous by the pain and discomfort in the flank.

Friday, April 22

Last night as I sat watching a movie, the pain in my hip was suddenly familiar to about sixty years ago. It was during a swimming lesson when I was nine that the instructor, in showing me how to kick, grabbed both feet and tore a muscle in my groin. Some time later the pain settled into the right hip and remained there whenever I sat for a long while. At some point during my teens that pain stopped bothering me. I bring this up because injuries can become disassociated and healing can be deferred for decades when a person is in Pause mode. The doctor who did the eco-doppler today kept wondering aloud why my leg would have reacted as it did without having been exposed to a recent trauma. Deferred healing would explain that.

Today I was still hyper PD and Recovery symptomatic, but less so than yesterday. Last night I hardly slept (not from pain but from discomfort in the leg) and although today I had only two hours rest to make up for it, I feel that I will not sleep well tonight. All of that seems to have been brought to the fore by the deferred healing process.

However, lest I be viewed as unhinged, I save my speculations for all of you and my friend Jeff – who leaves for Venice early tomorrow morning. We dined out tonight, my first time since last summer. Not once did I have to blow my nose, and the liter of water I drank stayed put until after I arrived home.

Internally, another layer has peeled itself off the onion of fear.

Saturday, April 23

I was right about not sleeping last night; one hour then nothing until five. Today the right hip hurts less while seated than it did yesterday, with the exception of being seated in the wheelchair. The bruising is also less, and the swelling, although it continues to spread downwards, it feels less severe. 

That all of these are signs that a deferred injury is finally healing is astounding to me, and that it is happening to me is on par with my winning a mega lottery.

Sunday, April 24

I slept well and for seven hours. Because the right leg is still swollen and bruised, Natalia gave me a ride into town without a corresponding walk, and it still tired me so much (in part because the hip pain required sustained adjustment in how I sat) that I slept three hours after lunch. The leg looks and feels better, however.

Had a good meeting with the Parkinson’s Recovery support group on Zoom. Some of the members have had really positive developments during the past few weeks, and all were generous with their sharing and attention.

Natalia was late. Eight people including babies and a woman of 88 arrived today from Mariupol with nothing but the clothes they were wearing, and she made sure they had food enough for several days. There are 2,000 Ukrainian residents in the greater Orvieto area, and they, with the larger community, have welcomed more than 500 refugees.

Remember, always, to find reason for gratitude.

Monday, April 25

Slept two, was awake for three, slept three. The right hip is still sore as is a muscle on the inside of the right thigh, but the bruising is almost gone, and the swelling is gone above a distinct point just below the knee. 

I’m tired tonight. Will find a means of staying awake and hope for a good sleep.