Repair – March II

Tuesday, March 7

A week ago I experienced walking well as I’d not done in years. Today, I could barely walk at all. I’m sure there are brain reasons for this kind of random progress, but I find it difficult to adjust. Movement in general today was reluctant to an extreme. I may have been limp all day, I’m not sure. I know it wasn’t rigidity I suffered, nor frozen action, but it was close enough to PD to seem threatening. The evening walk was smoother than the morning. Connections with people on the street were marvelous beyond description.

Wednesday, March 8

My father was diagnosed with Parkinson’s in 1983, and the drugs stopped working in June of 1986. I was in Williamsburg at Virginia Shakespeare Festival that summer, so was not able to make it back to California until September. But I shouldn’t have worried, my parents discovered a better remedy; Certs breath mints, preferably the wintergreen, as I recall. They worked, too – for a time.

“…some people with PD who are convinced that some vitamin or supplement will cure Parkinson’s might see their problematic symptoms completely go away in response to the vitamins or supplements – until they have some new life crisis or indulge in a negative thought.” (from Stuck on Pause by Janice Hadlock)

Thursday, March 9

After five good hours of sound sleep, I suddenly woke with fifteen legs, each wanting to go its own way. After several attempts at rearrangement, I removed myself from bed to try the usual tricks, but none worked. Roman arrived in the midst of these efforts, and distracted me with the morning rituals, including breakfast – which today featured for the first time a sugar-covered donut. Given that I was too wasted to walk or row, and neither bed nor recliner offered any comfort, we opted for the vibrating chair, usually a safe bet so long as I have help in and out of it. Today, after only a few minutes my repose was ruined by a particularly strong form of RLS, which I tolerated for awhile. When it crossed the line into super annoying, I called for Roman. No answer. He’d gone shopping. I learned a lot about sucking it up and dealing.

When Roman returned, we decided to try the recliner. Miraculously, there was no RLS and I slept for two hours. Roman claims that my snoring caused Roberto’s dogs one floor down to bark.

I try to apply the principles described in the Recovery literature, as to why stuff happens, but usually feel that I come up short. Friend tells me that if there is something I really need to do or pay attention to, that he will tell me. Otherwise, observe, relax, enjoy the journey. Even when the waters are rough.

Friday, March 10

In Scranton, my favorite forms of exercise were walking and swimming, but for those mornings I could not make it to the pool, I purchased a rower. When I moved to Orvieto, I left almost everything behind. A few months ago, I was suddenly possessed of the idea that rowing would be good for me, so I ordered the same model that I had in Scranton. The first day I used it, I was able to do fifteen minutes of full-bore rowing without pauses or slowdowns. Since that first time, I can barely do six minutes with structured light periods. This particular health adventure of recovery from PD defies logic, and as crazy as I am, I still rather foolishly expect logic to prevail. Of course there is a logic to it all, just not one my brain can wrap itself easily around.

Saturday, March 11

A local hotel that is upgrading under new ownership donated eighty beds, with bedding, to Ukrainian relief efforts, and Roman took on its planning and organization. Then the huge delivery truck showed up a day ahead of schedule. The beds had to be shuttled from the old town to the truck parked in a lower suburb, so yesterday Roman left suddenly after Iryna arrived to untangle all the now chaotic remnants of formerly perfect order. It all worked out fine – and this morning he was jubilant – but the day began late so I wasn’t able to walk.

The rest of the day, whatever walking I did at home was subtly improved. Taking that out to the sagrato, this evening, was a challenge but not a failure.

Sunday, March 12

Was up and down all night. Finally, at 06:00 I took a tiny dose of Medinait and slept until Natalie woke me at 09:30. The result has been a day of extreme poverty of movement. Add to that a painful callous on the bottom of my right big toe, and walking was practically impossible. That is all.

Monday, March 13

Another spotty night. Consequently, I napped a couple of times today, but naps have lost their zombie sting. For now. And I didn’t have one serious incident of RLS. For today. I’m going to try to resist reporting incidents as trends. At least try.

I feel good! Walking, typing, and sleeping are unpredictable, but I have been able to read in comfort. Of late.

Repair – February IV

Wednesday, February 22

Today, my invisible Friend read me a riot act. For the first time in a while, I slept poorly last night and all due to an inability to arrange my limbs into a comfortable position. So this morning I was too tired to walk (we tried, though) and that allowed me to sulk come my alone time in the afternoon. Friend’s response was basically this:

“You have spent your life undermining, minimizing, or dismissing every gift, advantage or talent you were granted, and now you are treating recovery in the same fashion! Stop it! Forgive yourself and move on! The universal struggle is to avoid self pity for having to live within the same borders that all creatures do. Engage, cherish, and contribute.”

The evening walk was much stronger even though I still felt off.

Thursday, February 23

The day was dominated by a non-functioning email account that I’ve been struggling to fix for three days. Today introduced a customer service person I couldn’t describe my problem to, and who sent me instructions to do what I’ve been doing for days without success. The whole experience frayed my nervous system and sucked the life right out of me. Otherwise, I walked well and slept a lot.

Friday, February 24

Towards the end of an afternoon visit with friends, and after about an hour of good conversation, the bottom fell out of my energy and I could effectively do nothing. It was only after Roman’s changing me and taking me to the Duomo for an evening stroll that I realized that I had probably gone limp when the dopamine ran out. Ideally, I should have done nothing while the brain recharged, but I was already committed to movement, so I did five laps (about a kilometer) and felt at least more normal, if not energetic, afterwards.

Saturday, February 25

Very unusually when Iryna woke me at 09:15, I didn’t want to get up. I remained half asleep until a fifty minute nap at 14:00, which needed about an hour’s recovery before I could walk. But I felt especially well underneath it all, like I was watching all this play on the surface to no real consequence. At some point during the morning, it seemed that the tremor turned off for an hour or two. I’d been trying to turn it off at the sacrum yesterday and before bed last night, but this morning it seems to have happened on its own.

(from Recovering from Parkinson’s by Janice Hadlock)

“I hypothesize that the origin of the electrical ‘static’ driving the tremor is in the sacrum (bone at the bottom of the spine), not the thalamus. I have seen that, in people with PD, when the pause-driven sacral tremor is temporarily turned off (using a type of visualization exercise described in the book Stuck on Pause), the brain’s internal tremor also ceases.”

Sunday, February 26

I woke after eight hours with the tremors turned off, or at least at such a low volume as to be barely noticeable. This lasted through lunch. After lunch I napped for 35 minutes and that sent all the comforts of the morning to the trash heap. Not quite all. I still felt a deep sense of wellbeing with a strong and affectionate connection to my Friend. Slowly through the afternoon and evening, the brain stabilized, and I was still again by bedtime.

Monday, February 27

It is said that PD patients have an internal life characterized by sulkiness and petulance – and maybe not just internal. Letting go of those habits for me is like peeling an onion. But it is necessary because the recovery process depends on their absence or exposure.

I woke this morning rather still, and like yesterday, maintained the stillness until after lunch when naps and their aftermath destroyed it. Stillness returned after the evening walk, prompted in part perhaps by a felt presence of my sweet parents. I also asked my Friend for help in quieting the sacrum, and it was forthcoming.

Repair – February III

Friday, February 17

Monday night I slept eight hours, Tuesday, nine, Wednesday, ten, Thursday, eight. All of those days I also slept at least three hours in the afternoon. For most of that, there was no discomfort in bed, neither real, nor (as has often been the case over the past four years) oddly imagined or based in hard to describe attitudinal habit. When the brain is healing, it needs sleep.

The flashes of improvements in movement that I have been experiencing over the past few weeks have been stabilizing into regular and sustained patterns; many of the differences are still tiny and subtle, but repeated and undeniably real. They include sitting instead of plopping, a gait that begins at the heel and rolls through the foot, some postural improvement, and reduction in over production of saliva.

All that is mixed in with back and forth frequency and nature of tremor, stiffness, and poverty of movement, so it is often difficult to give my brain full credit for all that it is learning, but when I really pay attention, I am rightfully encouraged.

In the random-pain-that-works-itself-through category; a week ago commenced a discomfort sitting (practically everywhere) sourced deep in the muscles of the extreme lower back and hips. For several days it felt like I would never sit again without pain. Today it vanished. (That may have been a deferred healing, or it may have been the result of yesterday’s shiatsu, or both. In any case, I’m pretty happy.) I hope it stays away.

Saturday, February 18

A step back on most fronts today. Not unusual in this process but always disappointing. I should mention that sleep was still deep and plentiful, and that under a thin layer of depression lay a solid sense of wellbeing.

Sunday, February 19

Holding steady on award-winning sleep for both duration and comfort. Naps are not so benign, leaving me shaky and with poverty of movement for a longer period than was the nap itself. Overall, however, I feel better than yesterday. Walking sucks but less so. I continue to be hungry most of the time.

Monday, February 20

Today is the second anniversary of my being free of anti-Parkinson’s medications. If you want to read the history of how I got there, click here. It’s not my best writing, but it’s informative.

Regards the tremors being brought on by stressors, today was a fine example of how that works. First there was a pre-lunch nap that left me shaky, then sauteed zucchini that was difficult to pick up, then another nap. That was followed by the putting in of long-use contact lenses, and a two hour attempt at getting my email account to work again. After an hour of the last I was tremoring everywhere I have ever tremored, then suddenly I sat up straight, I could feel a change in my brain, an inner voice said “NO” and all tremors instantly ceased. For about a minute, maybe longer. This was intriguing so I tried repeating it with some early success. It’s not the first time I’ve been without tremor, but it was the first time I observed the brain’s process behind it.

Repair – February I

Tuesday, January 31

Another night that included everything from blissfully sleeping wrapped in silk, to not being able to move in any useful way, at all. I got very little sleep and that determined my day until evening.

Wednesday, February 1

Another night like yesterday’s (and another day, following), except that in spite of the tendency to fall asleep anywhere, I felt particularly light and open. Walking was awkward but not tight. Typing was fairly smooth so long as I didn’t try to go at an accustomed speed. Tremors and shakes were 90% absent. And postural reconstruction continued to become evident. Posture began to improve about a week ago when suddenly I didn’t need a neck pillow when reclining. That was further supported by my ability to lie down on my back with my head more easily following. Neither has been possible for at least 18 months.

Thursday, February 2

I slept nine hours, broken only by a half hour in the middle. After a walk, shower, and lunch, I napped an hour more. During the hour that necessarily followed the nap (for de-zombification) I noticed that my default state is, for now, tremor-free, but that certain mental habits or stresses can turn tremors briefly on again. Stressors include (but not always and are not limited to) opening and passing through doors, positioning the on-screen cursor using a mouse, engaging in conversation with more than one person at a time, and eating spinach or anything else difficult to spear with a fork. Mental habits are harder to identify but all seem to involve fear of an imagined threat. I theorize that although a real threat may be followed by trembling, the brain would be too busy trying to confront the danger to indulge in a lousy tremor.

Friday, February 3

So, revisiting the tremor. I slept nine hours last night, plus an hour break in the middle. We walked the garage for a half hour, then bumped on cobblestones for twenty minutes to the dentist, had my teeth cleaned and bumped back. I read for a few minutes while Roman fixed lunch, and watched a YouTube on New York City architecture. Then I took a fifteen minute nap. Aside from arm clenching during some of the walk, there were no tremors until after the nap when arms and jaw tremored for about fifteen minutes, so add naps to the list of possible stressors.

Saturday, February 4

Revisiting naps. I usually doze for fifteen minutes while waiting for lunch, and the quality of that sleep is so delicious that I don’t resist trying for a longer nap after lunch. That almost always turns out to be a mistake. Zombification sets in, often joined by restless leg syndrome, and can take an hour or more, and lots of hall pacing to resolve. Even, then, it is now four in the afternoon and I’ve done nothing since lunch except to deal with the aforementioned annoyances, and am fighting to stay awake as I write this. The good news is that I have been tremor-free since about three.

Sunday, February 5

I slept well but heavily (in that it was hard to roll or adjust) for about three hours, was happily awake for one, then slept for four moving progressively more easily to where I really expected, once awake, to bound up and run around the apartment. Instead, I was super limp but oddly light rather than dragging, like I was in danger of floating if I didn’t concentrate on my feet. 

Irina changed my clothes after breakfast and we went to Piazza del Duomo to walk. When we arrived, there was a tractor meet slowly filling the square, tractors of all sizes and shapes, all immaculately clean, and they just kept coming, maybe 100 of them in total. We tried walking the sunny side of the sagrato, but the combination of arriving tractors and feeling odd on my feet doomed our accomplishing a real walk, so we gave up and went to the Cat Park where I napped in the sun among contented felines for twenty minutes. The nap did not spawn zombi-ism, somehow miraculously.

Once home, the feeling of wanting to limply float away persisted, but tremors were almost entirely absent all morning, and the couple of times I experienced a poverty of movement freeze, they were accompanied neither by tightening muscles nor by shaking of any genre.

However, after lunch I took a short nap (because I had to) and woke with RLS and mild zombi-ness. When I paced to free the legs, walking was speed-erratic, something I thought I’d left behind several months ago. Recovery follows no straight lines but damn it’s hard to accept sometimes. 

Monday, February 6

Sleep was often interrupted and stubbornly difficult, but one way or the other I got six and a half hours before Roman dutifully shook my foot at 09:15. Walking was a little better than yesterday immediately on my feet, but most important, the feeling of oppression so prevalent yesterday was gone. In its place was a giddy acceptance for exactly where I am in this process.

Had an acupuncture treatment to open up the Du channel, left me even more floaty than yesterday, but also more relaxed in various ways.

Repair – January III

Tuesday, January 17

In a mirror image of yesterday, I slept well until 05:30 then never again. Again raw energy, but as we were preparing to go out for a walk it ran out and I slept instead of walking.

Two general positives, the stabbing pains in my feet were a regular and frequent feature and have essentially gone away (I had one last night and that reminded me of how rare they have become). And getting out of bed gets easier every night, sometimes startlingly so.

Wednesday, January 18

Slept well, but not enough and was sleepy most of the day. Yesterday my left hand was plagued by sharp (but not stabbing) pains, but this morning there were none. Today I woke with a sore jaw, but by Thursday midday it was fine.

Thursday, January 19

Slept a straight eight, but was sleepy anyway. A short nap after lunch did not help, zombified, I struggled to walk or move. I imagined that shiatsu would help, but the session provoked a lot of restless leg syndrome, and as soon as it was over, all my muscles tensed and stayed that way. I expected the evening walk to be a disaster, but it wasn’t bad.

Friday, January 20

It was difficult going to sleep, and once sleep became sweet it was time to get up. Poverty of movement typified most of the day. It was hard not to nap, but when I gave in to it, I had to suffer the zombificated consequences. However during a post nap pacing of the hall intended to reverse the worst effects of zombie nap, I had several symptom reducing flashes of safety, longer and more distinct than before, and it was clear that I always have the safe path as an option, but aside from the flashes I cannot make the choice real… yet. Walking was okay but both times I ran out of steam at about the fifth lap.

The left ankle hurts.

Saturday, January 21

The safe flashes lengthened today and clearly showed themselves as a matter of choice, rather than involuntary happenstance. My imagination characterizes the flashes as “clean sheets of paper”, and during these periods, symptoms are reduced a bit, but most remain, the difference being that the entire state of mind associated with symptoms (PD, not recovery) is secondary to the sheet of paper rather than dominant.

Roundup: food is more flavorful than it has been in memory, even when I’m not paying attention. Occasionally I smell something, at random. The pain in my left ankle is gone today. Janice tells me that plopping into a chair is a recovery symptom; I’m plopping again, but not as heavily as before.

I feel astonishingly myself, as if a mask I didn’t know I was wearing has suddenly fallen away.

(from Recovering from Parkinson’s by Janice Hadlock) 

“Not only might your doctor, friends, and family unwittingly push you into a negative mindset with their comments such as, ‘Well, you still drag your foot, so you’re obviously not getting better,’ but you yourself, your own mind, will be constantly attracted to the comfortable familiarity of saying, ‘I’m not recovering: I’m just kidding myself.’

A person can develop a powerful mental habit of doubt during the years of being on pause. Even after pause turns off, the mental habits of pause, the reinforced brain wiring you’ve created that supports negative thinking, might still be well established. Months, maybe years of retraining might be needed before your brain habits are firmly rerouted into something closer to the range of normal positive attitudes. During recovery, doubting that the recovery is real is very common, due to the long-running mental habit of being negative and skeptical.”

Sunday, January 22

I was up every forty-five minutes last night until about 07:15 when I finally got comfortable (the position felt simple) and I slept like a baby… for two hours. Needless to say I’ve not been very much in form today. On a positive note, a flurry of short staccato shuffles as I approached the bed just now reminds me to say that I rarely do that or lose control of speed anymore, whereas six months ago it was an hourly occurrence. Also, about all those times getting out of bed by bending at the waist and rolling off, they would have been impossible a few weeks ago. Less happily, the clean sheet of paper was glimpsed today but never became of state of being as it did yesterday. That’s okay, that will cycle around.

Typing is awful.

Monday, January 23

Slept okay last night. As usual moving about the apartment was harder than walking the garage, and the garage was not great. Both morning and evening walks were difficult and a bit boring.

The clean sheet of paper is hovering in the background.

If I could type more easily I would write about the invisible friend adjustment, but while typing is better than yesterday, it still chokes inspiration and obliterates style, so that tale can wait.

Repair – January II

Wednesday, January 11

I ran across a passage in Recovering from Parkinson’s about how scar tissue along the Stomach Channel can block the qi or make it run backwards: “the channel qi can eventually start to get backed up and then set in motion the various channel qi and muscle behaviors that ordinarily should only occur during pause.” I had a huge spider bite just below the waist, left side, July 2013 and hernial surgery, same side/area, November 2014, so that sounded important. I wrote Janice. She encouraged me to find an acupuncturist to examine and correct this, if needed. I replied that the finding an acupuncturist who speaks English would be the challenge. “Ask your Friend to make it happen.” 

Okay.

So, as we were preparing for a walk I asked my Friend to help me find an acupuncturist who speaks English. On the way home a neighbor stopped in her car. I asked how she was. “Just got back from an orthopedist. He also does acupuncture.” And he speaks English and is based in Orvieto.

Thursday, January 12

It is written that when experiencing limpness (a recovery symptom I know too well) should something happen the brain categorizes as an emergency, normal movement will kick in to resolve the crisis. So, today the door bell rang. I was in the recliner which I cannot rise from without using its eject function. Roman was in the kitchen with the door closed and didn’t hear the bell. I was expecting a delivery from a place to which packages have been returned before when no one was home. The bell rang again. I was on my feet and at the intercom before I knew what happened. Rather a thrill, that.

Friday & Saturday, January 13 & 14

Limp!!! (And back to work on my novel.)

Sunday, January 15

Limp and light-headed around the house, steady and walking well in the garage; right arm has tightened hardly at all this week. Slept a straight eight.

Monday, January 16

Wide awake until 05:00, no thoughts or real discomfort, just raw energy. Hungry all day. Flashes of feeling safe that last only a few seconds signal a reduction by half of all symptoms for the duration of the flash.

Quote 2022

“Suddenly, the long years of feeling somehow apart from others, either alone in the universe or trapped in a world with what he imagined to be a silent, judgmental God, are ended. In many, many cases, the person perceived his previous mental attitude as sulking and petulant, even infantile. During the epiphany, he decided to stop sulking and – usually sheepishly accept the love and membership in the human race that he has been spurning.”

From Stuck on Pause by Janice Hadlock

And for the music and the faces, it’s the time of year again for THIS

Recovery – October 31

Tuesday, October 25

Yesterday’s personal theories about zombie naps and related subjects were blown to bits by today’s reality. The details are not worth getting into. Suffice to say that I will try to suspend my mental habit of figuring everything out for myself, and turn instead towards taking each day as it comes.

Things that came with this day include:

Roman has been massaging my legs morning and night since early July 2021. He said that for the first time the calves are supple instead of hard. (Six days later, they continue to be so.)

There were several periods of ecstatic love, Sunday, yesterday, and today.

The feeling of assurance regardless of how talented (or not) movement is, continues.

Janice’s response to this week’s report; “that gradual improvement is really the test. NOT having all the symptoms be completely gone by today or tomorrow.”

Wednesday, October 26

Walking has been wretchedly difficult all day (though it started down that path yesterday) and putting on glasses or inserting hearing aides (and the like) is arduously slow, but typing is good enough that I wrote and edited an 800 word article for Orvieto News on last Sunday’s concert. That felt like a return to life.

As far as movement goes, I let it be what it was. Interesting result perhaps; Teo the Tabby walked four out of five laps on the sagrato with us and waited for us at the ramp for the fifth; dogs were friendlier than usual (and so were people).

Thursday, October 27

I slept nine hours with an hour break around four. Movement is laborious, though typing is not bad. I still feel safe. To our great disappointment Teo didn’t show up for our walk tonight. I hope he knows he is always welcome.

Friday, October 28

Sleep last night was interrupted at around 04:30 by a dream-induced need to reposition my limbs. When attempts at doing so yielded no relief, my sleeping mind decided to crawl out of bed without plan or strategy. I flailed and twisted and groaned and finally pulled myself over the edge, heart pounding like a hammer. I’d done something similar several months ago. The difference this time was that while my body was frightened by the experience, the mind was not. Nevertheless my body’s fear discouraged further quality sleep.

I mentioned last Sunday that I could not stand and clap at the same time. What I didn’t say is that I couldn’t clap at all for longer than about three seconds. A couple of weeks ago, Janice responded to my post by saying that I was essentially recovered with mopping up to do. I prefer the war metaphor; the longer the conflict the longer the reconstruction – meaning such things as relearning to execute repetitive movement. I decided to apply effort towards that relearning, and by this morning I could clap. Stand by for more.

Saturday, October 29

Walking was so hard in the morning, and I was so tired all afternoon, I was surprised when the evening walk turned out to be pretty decent; controlled, rhythmic, and quiet.

Sunday, October 30

A week ago when I wanted to give Maestro Cambri a standing ovation, I couldn’t clap my hands. In truth, I’ve been unable to clap for well over a year now. Repetitive movement needs to be automatic in order to sustain itself, and one of the characteristics of Pause mode is the lack of automatic movement. So, Sunday before bed I began to re-train my hands to clap. By Wednesday evening I could applaud for ten seconds before I ran into a wall. By Saturday evening, I was able to clap for a minute or more.

As I mentioned before, Janice recently responded to a week’s report that I have recovered from the root cause of PD – being stuck on or habituated to Pause mode or Pause mode mental habits – and that now I have mopping up to do. The example of clapping is, I believe, what much of mopping up will look like.

Natalia helped me regularize my inter-lap exercises, this morning, and they coincidentally involve repetitive movement, as well as isolation of movement and tension. For the past several weeks, my hands tighten when I walk. The more fluid the walk, the tighter the hands; they want to grab hold of something for stability, and the aftereffect is severe muscular pain on the outside of the wrists. Today we discovered that when I slowly close and release my fists and fingers while walking, the hands remain relaxed.

The next few months are going to see a lot of that kind of thing. They are also going to see my becoming suddenly tired during exercise as the brain learns how much dopamine to produce and where and how quickly to release it. In the meantime, there may be accompanying mood swings. I will deal. Just be careful not to spill on others.

Monday, October 31

The streets were filled with angels and demons, witches and wizards. My evening walk included a few echoes of Bob Fosse (unsustained but fun). I didn’t wear out during the five laps, but was fairly wasted afterwards. Yesterday’s Zoom meeting of our PD support group was profound. Typing today were better done by a team of hyperactive kittens. Have a good week.

Recovery – October III

Tuesday, October 18

T’was a beautiful morning. Piazza del Duomo was full of sun and people. And Paolo Zanzarelli, the classical pianist, had his concert grand set up in front of the Duomo to provide a musical underscore. Then just as we were starting to walk, bells rang out. 

I asked Roman where they were.

“Maurizio is returned from vacation!”

Maurizio is the bronze knight who was put atop the smaller clock tower to strike the time for the workers who built the Duomo. He has been inactive for at least a year.

And for our final lap on the sagrato, Teo the Tabby Cat followed us.

As we came down the ramp, a police car pulled along side the piano and parked. He rolled down his window, and as we passed I could see that his eyes were closed.

I walked well, by the way, seven laps without even realizing it.

This evening we circled the Albergo Reale twice, and it was so much easier than ever before.

People are congratulating me, and I love it. But there is still a lot of repair that will happen before movement is fully restored. (I’m not complaining.)

Wednesday, October 19

I slept eight hours last night with a one hour break in the middle. During that hour, walking and sitting were better than usual, and so was typing. Also more prominent was nasal discharge, so I took two demitasse spoons of NyQuil to help stem the flow. It worked. But this morning, walking and typing are back to being awkward, and little things that were calmed or absent during the early morning break (like the mouth and tongue tremor) were back.

So, most of the afternoon I sat, and I never became uncomfortable (an hour sitting has been my limit). When I finally got to my feet at 16:45, walking was slow but steady. Typing now is decent. I still feel assured. So, perhaps this morning’s backwards movement was the result of cold medicine at 05:00.

This evening’s walk around Grand Albergo was unremarkable in all ways. I have to be careful not to let my mental habits throw out – as imagination – all the progress of the last ten days.

Thursday, October 20

A fabulous garage walk this morning, controlled, relatively relaxed, and in pretty good form. (“Fabulous” is my own highly subjective assessment, Nureyev I’m not.) (Well, okay, I never was a Nureyev, but today compared favorably to what I could do a year and a half ago.)

The afternoon was a total space-out. I don’t know why. That state of mind blended into the evening walk on the sagrato which was otherwise pretty good. Changing direction on my feet and initiating movement has been easier today than they have been in a year and a half. (Easier, not easy!)

Friday, October 21

Walked the garage this morning, did well but ran out of oomph at the end. Could barely walk afterwards, though I took the three lobby stairs so well that Roman teasingly suggested that I forego the elevator. Energy recovered moving around the apartment. Then I napped for twenty minutes while sitting upright, and woke immobile. Staggered to Roy’s car, and recovered during the drive. The walk from car to studio for Alexander was strong and relatively smooth. I took the six steps up without difficulty. The lesson was good, but a lot of work. Afterwards, I could barely walk back to the car, and once home, could barely move. I had guests for two hours, movement continued difficult. The evening walk around the hotel was smooth, and relatively relaxed. After two circles, I opted for a third, but a quarter way around I could feel the dopamine deplete, so we called it a day. All through the day whatever the quality of movement, I felt in control and assured; there was no panic or elation. That was a very good thing, indeed.

Saturday, October 22

I was wired last night and therefore slept poorly, and that made the morning walk an on again off again proposition. The afternoon featured a couple of timed naps, and much confusion with a friend trying to find my apartment (never did). That and some incipient boredom left me emotionally on edge, but it lurked threatening and never spilled over. The evening walk was steady, calm, and controlled until I suddenly ran out of dopamine in the middle of the fourth lap.

I am reminded of how important it is to actively counter the propaganda of PD’s being incurable and neurodegenerative. Falling into that habit sets up a “clinging to life” struggle which sends me right down the Pause-like symptoms rabbit hole, and results in a downward spiral into self-induced Pause-land. (Forgive me if that sentence is too jargon-y to be sensible, it is meant primarily for fellow travelers.) In other words, it is essential not to be frightened by seeming setbacks. PD is an electrical not a chemical imbalance, and recovery is therefore prone to be quirky. But progress is real and the zigzags do not invalidate that reality.

Sunday, October 23

Sleep was back to being sound, last night, and even with a very slow start, this morning’s sagrato walk was steady, controlled, and in good form. I took a timed nap (25 minutes) after lunch and woke to zombie immobility that took longer than the nap to recover from. That doesn’t happen when I wake during the night after two or more hours sleep, nor does it happen in the morning

The wake and shake phenomena, however, seems to be on the wane. Dexterity seems pretty good (with the exception of zombie-ness) as does directional change and initiation of movement (same exceptions).

I went to Maestro Cambri’s piano recital at Teatro Mancinelli this evening. It was magnificent. And I was in the wheelchair for a total of three hours without discomfort. I tried to stand for the ovation, and I did too, but couldn’t gain my balance to applaud at the same time. What a thrill, though, to be back in the Ridotto (reception room, see this week’s photo).

Later, movement became difficult again, and a feeling of being under water (best I can describe it) prevailed.

(from Recovering from Parkinson’s by Janice Hadlock)

“In addition to becoming limp during the time of day when a significant amount of healing was happening along the path of a given channel, a person who is recovering might become limp for a short while if/when the brain’s dopamine supply temporarily runs out. During these fairly short periods, which occur when there is no emergency on the horizon, the person feels limp and relaxed – which is how a person feels when dopamine is sufficient for consciousness but insufficient for motor function. Over weeks or months, as the recovering brain steadily increases the amount of dopamine in response to need, these short-term, temporary events become further spaced apart and last for shorter durations until, at some point, they never occur again.”

Monday, October 24

My personal theory as to why there are zombie naps is that with real sleep the brain prepares for being awake and a part of that is release of dopamine, which is inhibited during sleep. So, from a nap I wake dopamine depleted, or in my highly technical description, zombie-like.

As to yesterday’s quote, two or three months ago that depletion/regeneration cycle seemed to occur over a period of days instead of hours and minutes as noted above. These days, it seems to occur over a period of hours. Though because the recharged periods involve improved movement but not yet free movement, perhaps there are cycles subtle enough that I don’t notice them.

Tonight’s walk was automatic but not perfect (posture was wanting, my arms seized up, there was minor dragging of the left foot), and lasted about thirty minutes before I lost steam. Recovery took at least ninety minutes, but that’s better than several hours.

Recovery – October II

At some point this afternoon while I was sitting on the edge of my bed, I spontaneously experienced the five steps of turning off Pause; a “hug” from my Friend, full body tremble leading to feeling safe, a deep breath, head wobble/shudder, a thrill of energy up the spine. The experience was involuntary and very strong. Where to put this episode in relation to being on Pause is unclear to me, but it was undeniably significant.

Janice’s response to this event was: “your spontaneous Five Steps means that, the most recent time you automatically, from habit, turned pause back on, your brain, with no input from your conscious mind or any ‘techniques’, said to itself, ‘oh. we can turn off pause. there’s no danger here.'”

Then there is this from Janice in response to last week’s report.

“…when you go limp this last week, you’re able to accept it with bemusement, not terror. that’s really the difference. you are using a different personality to deal with life. that’s the real recovery. the symptoms, they are not the measure of your change. the ability to say ‘ha! and now i am limp.’ without having an emotional self-attack, that’s what’s really important. the symptoms will go away as fast as they can, once you are no longer using pause.”
This makes total sense to me and jives with my experience. Huzzah!

Wednesday, October 12
I’ve been doing a kind of medical qigong on the left knee and ankle, and both are better. Walking today was lighter and easier. Roman was in a very silly mood, which was also nice.

This pretty much sums up how I feel about living in Orvieto – We are happy from ORVIETO

Thursday, October 13

I felt better today in terms of movement than I have for a long time. Nobody is going to ask me to dance or run a race, but from my perspective the improvement is huge. Also agility is smoother; putting in hearing aids, showering (with help, but also with pleasure), putting on glasses, rising from a chair. I can actually feel that I am not using Pause mode at all, and the result is silky and pleasant, which I guess is the natural state of those not on Pause, but to one who has been on Pause for who knows how long, it feels like a miracle.

Walking shows great promise, typing is in a world of its own (some good, some not so much).

Friday, October 14

This day left intentionally blank (too busy). Except! I moved to Orvieto seven years today. In many ways it seems a lifetime.

Saturday, October 15

I can feel that I am off Pause, can catch myself leaning towards it by habit, and can choose not to go there. Staying off Pause most often results in a moderation of symptoms, but not always. It does, however, create a lightness of being which is very encouraging. And symptoms are gradually releasing their grip, overall.

By evening I was feeling a tad restless. Then Natalia came and took me on a gradually expanding walk through town. It was hard towards the end but I stayed off Pause and was not too tired afterwards. And my right arm, which tenses up while walking, stayed relatively (not completely) relaxed. And while the streets were crowded, the activity didn’t’ freak me out, like it usually does.
(from Stuck on Pause 2022 by Janice Hadlock)

“Stories abound of saints who are unharmed by, who even play with, animals that are usually considered highly dangerous. This is because those saints feel safe. Their feeling of safety has nothing to do with any logical assessment of the odds for physical safety in a given situation.

“If the self-induced pause habit was used for decades, it might have become deeply entrenched. If so, then even after turning off self-induced pause for the first time, the person might find himself reverting into self-induced pause mode again in response to even a mild emotional or physical upset: if the phone rings, or if someone knocks on the door. If this is the case, the person might need to turn off self-induced pause repeatedly over a few months or years, until he starts solidifying the new habit of feeling safe. When that habit can be invoked on command, he can destroy the pause habit and replace it with the new healthy habit.”

A curious phenomenon exhibited itself this evening, a feeling that all movement was confident and fluid, while in reality there was no objective change. The fear and wariness were gone.

Sunday, October 16

That confidence lasted through the night, and reappeared in bursts on our walk from Piazza Gonzago to San Giovenale. (From cliff’s edge the valley was filled with fog, and it gave the illusion of our being high in a plane.)

The feeling of self-generated confidence waxed and waned through the afternoon, then stabilized again come evening. Natalia took me on a tough-love walk to the far edge of Piazza Gonzago – head up! back straight! longer steps! pick up your feet! I understand better why the Ukrainians are winning. Then she gave me supper with polenta, funghi, cingale, and grilled vegetables. I am totally spoiled.

Monday, October 17

I slept nine hours without a break last night!

I’ve a new word for how I’ve felt these past few days; assured. This morning’s walk on the sagrato was smoother than usual, enjoyable, and… I felt assured. Typing is a mess, but it’s not bothering me, just preventing work on projects. Talking and voice are in and out, there is some shakiness, and there is far too much saliva being produced, but I am okay with all of it. Underlying everything is a feeling of safety.