Author: dallanz

Repair – March V

Tuesday, March 28

For the past several days, sleep has been off-kilter and out of whack. Last night was no exception. So walking in any venue was really hard, today. Should I close my eyes anywhere, I was asleep in under a minute. Anywhere except in bed, and at night, that is. I think it’s RLS. Suddenly, a position that has promoted sound sleep for several hours turns unacceptable, and once up I have to pace for a long time. And the day that follows is wasted.

Wednesday, March 29 & Thursday, March 30

Slept better, but still not quite enough. RLS was largely quiet, but there was still lots of pacing the hall to relax tense muscles. Normal walking feels a slight mental adjustment away, but I can’t actually find the adjustment. Drool is less, typing not good but better than it has been, tremor only shows up when I am stressed. There is no better entertainment than walking, and I miss being able to walk when I want to; movies and books are no substitute. Voice and verbal expression are both strong (Italian comes and goes).

Friday, March 31

Maria Rosaria gave me the bi-monthly pedicure today. She did all the usual things to the horribly painful callous on the bottom of my right big toe, then gave me a stretchy latex “brace” to protect it. The pain ceased. Being free of that pain afforded an immediate improvement in my walking.

Overheard conversation:

FRIEND: You need to relax.

ME tries to relax his arms and legs.

FRIEND: Not just muscles, internally as well. You’re always on the lookout. Those metal habits are a part of why you are experiencing the suite of syndromes known as Parkinson’s.

The arms are swinging a bit when I walk. Janice says; “…spontaneous arm movements. That’s your brain trying out some new, effortless (dopamine-based) moves. Dipping a toe in the water, as it were. Congrats!”

Saturday, April 1

Slept an hour, awake for one, slept four. Fine sleep all of it, but not enough. Movement is an odd mix of almost dancing and uncontrolled weaving and reeling. The latter dominates. I may be super limp again, I’m not quite sure. Typing is a disaster! 

Sunday, April 2

I slept hardly at all last night, trying and failing to find a comfortable balanced position until about 05:00 when I suddenly succeeded. I slept for an hour, then my brain tricked me with a faux reason for having to get up. After that it was back to trial and error for a half hour, when I decided against all hope to transfer to the recliner. Typically when I do that I sleep for twenty minutes then Restless Leg Syndrome kicks in (pun acknowledged) and I go back to the bed, but am often relaxed enough from the nap that I can find a comfortable position for sleep. This morning I slept in the recliner for more than three hours! No RLS. But at every hint of waking my body would stiffen into a plank and that would often be accompanied by full-body trembling (not a tremor). But neither would last more than a few seconds, so sleep was not seriously interrupted. 

Because Iryna let me sleep, breakfast, washing, and changing were all late, and Iryna had to go to her restaurant job early, so there was no morning walk. As soon as she left, I went back to the recliner to try for another bit of sleep like I earlier enjoyed. Same thing, only I slept a little less than three hours.

I am curious as to what form sleep takes tonight.

In my earliest exchanges with Janice, based on photos of me from 2015 and my descriptions of what I was experiencing with health, she suggested that I had Types I & II Parkinson’s – according to her system outlined in Recovering from Parkinson’s. Type I is self-imposed and 90% of her patients have experienced it, and of Type II she writes: “almost any significant blockage along the Stomach channel might eventually cause the Stomach channel to flow backwards. Although most of my Type II Parkinson’s patients have had backwards-flowing Stomach channel qi due to a foot or ankle injury, other damage along the Stomach channel can also set the pause-type channel patterns in motion. For example, some of my patients have had Stomach channel qi blocked and flowing backwards due to an appendectomy scar.”

I have had a massive spider bite and a hernia repair on the left Stomach channel and have a large calcification on the right channel (where there was a fracture) just below the big toe. She strongly advises working on Type I causes first, in fact warns: “Hopefully, this will help convince people with Parkinson’s who intend to recover that they must recover from self-induced pause before they work on any injuries along the Stomach or Du channels.” My question is how, if Type II displays symptoms, do I know that I am recovered from Type I. 

Monday, April 3 & Tuesday, April 4

Good sleep. Good rowing. Good walking. Good typing. Good days. (“Good” in all cases is a relative term.)

Repair – March IV

Tuesday, March 21

Not as flowing as yesterday, but there are little things that remain easy where that is not usually the case. And joy. Lots of it. And everyone is excited about spring.

Wednesday, March 22

Could walk hardly at all in the morning, a result, I think, of not sleeping except in one and two hour chunks. But Roman and one of the guys from Opera del Duomo spent a good deal of time discussing how I could get in to see the Zubin Mehta concert on Friday, which touched me so deeply that it was all I could do not to cry.

The evening walk was almost the usual.

Thursday, March 23

I slept what has become my standard pattern, but was (almost virtually) asleep on my feet all day until shiatsu at 16:30 when I was able to sleep lying down. Morning walk was wiped out by the callous on my big toe; the pain overrode all good intentions. The same happened on the evening walk.

Friday, March 24

Slept until almost 10:00 having fallen asleep for good at 03:15. Then I sat for more than four hours around and at the concert at the Duomo without a hint of RLS, which is close to miraculous. Walking before and after that was a bit weird, unhinged, and random.

Saturday, March 25

After shiatsu on Thursday, Michele said that my muscles were exceptionally relaxed. Yesterday and today walking was (technical term) weird. Especially at home where there was actual, spontaneous arm movement; not coordinated or rhythmic and totally random, but still. Today walking the sagrato was similar but difficult and the arms were tight, as usual, and symptoms are as annoying as ever; weak voice, stammering, drooling, typing a mess, all of which had retreated earlier in the week. But RLS is largely absent or at least mild. What is happening??? Don’t know.

Sunday, March 26

When I have to pace at night in order to sleep (which lately is all the time) I ask for, and follow, Friend’s instructions. 

This was overheard Saturday night:

ME: How many laps or for how long a time?

FRIEND: Walk until you are walking normally.

ME: You mean without symptoms?

FRIEND: Yes.

ME: That could take weeks.

FRIEND: Yep.

ME: You can’t mean that.

FRIEND: I do.

ME walks for a long, long time. Buried in all that pacing are a few steps that are perfectly normal.

FRIEND: There! Did you catch those?

ME: Yes. And?

FRIEND: Repetitive action is difficult for you at first. Work on those. You can stop now.

Monday, March 27

Yesterday I attended a concert at Teatro Mancinelli. There was frequent clapping. Being repetitive action, clapping was difficult, but gradually I learned (again) and was able to do it.

Symptoms, so strong on Saturday, are now quite mild. RLS is lurking in shadowed corners, ready to pounce.

Attention must be paid to the subtlest changes. I am beginning to notice how the physical responds to the mental. And how even a butterfly’s fluttering of love can have a monumental effect. Just beginnings, but real.

Repair – March III

Tuesday, March 14

Sleep eluded me until 07:00 – I simply was not sleepy. At seven I sent Roman a text “If I am sleeping, let me be,” so I got four hours in. I napped an hour quite easily and am a bit anxious that my energy level threatens a repeat of last night. Other than the usual mobility and typing problems, I feel good.

Wednesday, March 15

I was in and out of bed until 04:00 then I slept a sound five and a half hours, but I was still half asleep until a brief chair nap just before lunch. For the rest of the day agility – therefore typing – was better than usual. Walking was a mess. Posture made me feel like a wadded scrap of paper with toothpicks for legs. So, while I could type fairly well, sitting at the desk left my neck and shoulders screaming with pain after about an hour. I took a couple of brief naps to rest the muscles, and woke only slightly zombified; so that was progress.

Thursday, March 16

An almost exact replica of yesterday.

Friday, March 17

Another day like Wednesday except walking a bit better and typing worse. 

This dialog happened with Friend.

FRIEND: You are minutes away from full recovery.

ME: How many?

FRIEND: How many what?

ME: Minutes. Three? Ten thousand?

FRIEND: All I’m saying is you are very close. 

ME experiences a warmth is the region of the heart, and is distracted by other things, but on the evening stroll there were lots of moments of joy.

Saturday, March 18

This dialog happened today.

ME: So, nothing yet, you must be talking thousands of minutes.

FRIEND: I mean minutes once you’ve let go of habitually retreating to pause-like mentality.

ME: How do I do that?

FRIEND: It’s a matter of love.

ME experiences love light again, only stronger and broader than yesterday, then it also fades.

ME: I can’t hold onto it!

FRIEND: No you can’t.

On the evening stroll, joy is rampant.

FRIEND: You can give up the bean counting, too.

ME: Was all that joy stuff me changing my mental habits?

FRIEND: You’ll see.

ME: It doesn’t last very long.

FRIEND: You don’t know that.

Sunday, March 19

Limp, all day and into the evening. Could barely move, let alone walk. Not rigid and not really unpleasant. Internal as well as external. Mental as well as physical.

As the evening unfolded, the limpness of water became the flowing of honey, and while I still walked like a duck, there was some strength in the waddle.

Monday, March 20

Two strong sessions with the rower, and two really good walks in the garage.

A series of five minute naps sitting in the recliner zombified me completely, but I was able to recover in just a few minutes, and that left me feeling like I’d been visited by a miracle.

Typing is a mess. Joy is frequent, simple, and loving.

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 – March I

Tuesday, February 28

Last night during the awake between first and second sleep, my Friend offered to energize my pericardium. I said “sure”. He said, “But let me do it, nothing for you to do except observe and enjoy.” There immediately began an energy bath that started in the region of the heart and spread to parts of my upper body. It was glorious and lasted for about two minutes. When it was done, I wanted more, so tried mightily to repeat the experience. “Let me do it!” he said. I tried to let him, but nothing. It was only just now I realized that allowing needs to be completely receptive, and that even issuing an invitation is doing something. (Friend also warned me at the time that there would be a rebound, but not being sure what that meant, I didn’t write this until the week had proven his point.)

This evening’s walk featured seven garage laps of feet picked up and heel to toe steps. People have been telling me to walk that way for years and I simply could not sustain it. This evening, I could.

Wednesday, March 1

Shiatsu yesterday, so everything is a notch askew. The tremors shut off occasionally, but I don’t know why. Walking today was not bad, but I had to struggle to achieve last evening’s form for even half a lap, never mind sustaining it for several. But I was able to advance on my tax numbers, so that’s something!

Thursday, March 2

Today it became clear that for all of my adult life, if not longer, I have metaphorically had one foot on the brake and the other on the throttle, simultaneously. The PD is the result of having to work so hard to get nowhere, and finally letting go.

A twenty minute nap after lunch destroyed my energy, focus, and typing for the afternoon and evening.

Friday, March 3

Except for a few periods of spontaneous energized pericardium, it was a perfectly mediocre day. But the pericardium energized is such a glorious experience, I want to live there always. I submitted an application and am hoping to be given keys before long! Friend says to chill, and take it as it comes.

Saturday, March 4

It was a very choppy night. After repeated, and oddly benign dreams about Kristallnacht, I woke at 06:00, tired and uncomfortable, and spent a half hour throwing myself at the pillows hoping that I would find an agreeable position that would invite, or at least allow, the sleep I craved. I finally gave up and moved to the recliner where I fell instantly asleep. Around 07:00 I was awakened by creeping RLS, and still tired, threw myself onto the bed, was immediately comfortable, and was asleep in seconds. That is all so weird.

But I never did get the sleep I lacked (and I was limp as well), so despite the sun and well-wishers, I could barely walk when Iryna took me to the sagrato. After lunch I feel asleep in the recliner for two hours without a whisper of RLS, but each time I even approached waking, my body stiffened into an imitation of a wood plank, and shook violently for about a minute. Once awake, it was an hour before I felt I could risk trying my feet. 

By the way, this morning there was no tremor. At all.

Sunday, March 5

Slept well enough that I was disappointed when Natalia woke me. Walked the streets around Grand Albergo Reale for the first time in weeks. It was a bit of a challenge. After lunch I spent two hours at the computer drafting and sending a letter to sixty people. It was also a bit of a challenge. Worn out, I sat down at 16:45 to wait for Iryna’s arrival at 17:00, figuring that if I dozed she would wake me. She ran late, I did fall asleep, so by the time she woke me I’d slept 35 minutes, hence the evening walk was much more than a bit of a challenge.

Monday, March 6

Another choppy, uneven night; slept well when I slept, but in between I wrestled to find acceptable positions. Between 04:00 and 07:00 I slept for an hour, paced the hall endlessly, stretched my back, and tried to get comfortably onto the bed maybe twenty times, then suddenly after a string of aborted attempts, it fell right and I was soon asleep. So weird. The rest of the day logically followed. I succumbed to a thirty minute nap around 14:30 and spent two hours trying to recover. The evening walk was awkward and shuffling, unlike the form during early morning hall pacing which was pretty damn good.

I’ve been begging Friend for more pericardial energy, and it does happen in life, only subtler. He says not to waste time and energy on being discouraged.

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.

History, February 20, 2023

It was two years ago on the 25th of January that I began weaning myself off the anti-Parkinson’s drugs that I had been taking for about nine weeks at a low dose of 300 mg a day. Thus began the most interesting, challenging, and transformative journey of my life. In honor of that beginning, I’m dedicating this post to how I got there.

One of the classic first signs of PD is a sudden loss of the sense of smell. That happened to me in early 1997, though at the time I attributed it to over use of nasal decongestant sprays. The next symptoms manifested as a gradual deterioration of posture. That was apparent by the time I moved to Orvieto in the fall of 2015, but as an occasional difficulty that came and went. A year later, I noticed that my left foot dragged a bit, especially while walking uphill. In April 2017 I noticed an invisible tremor in my right arm, and a tendency for that hand to turn into a claw. A year or so later, I began to experience difficulty typing, and gradually from there, constraints in indoor movement (movement outdoors remained fluent). I chalked it all up to old age.

In the fall of 2018 my physiotherapist told me that in her opinion I had early-stage Parkinson’s. That made sense to me – my father was diagnosed with PD in his early 70’s – but I tried to deny it. Nevertheless, when I experienced what could have been heart problems, I told all the doctors I saw that I was suffering from early PD. They did standard tests and told me not to worry. That happened at least six times, the final time with a neurologist. I switched family doctors and told my new one about this, and he, too, found no solid indication of PD, but ordered an MRI to be safe. Then a week later he saw me trudging up a hill and changed the order to a DATscan, the closest thing to a test for PD (nothing will detect PD conclusively). Suddenly, I began to experience stronger, more debilitating symptoms, and they continued that way for the two months between order and diagnosis.

The test results were sent at the end of May. New symptoms immediately followed. I increased my walking from five to at least seven kilometers a day. In mid-July my doctor started me on a very low dose of Madopar (Sinemet in US). After two weeks of feeling drunk, I begged off it. Symptoms improved. I was referred to a neurologist in Rome whose only offer was a higher dose of the same. I looked into a natural version of levodopa called mucuna, but could not find guidance on dosing.

I tried a naturopath, results inconclusive. In September, I heard about fecal microbiota transplants as an experimental treatment, and made arrangements to go to Bratislava for two weeks. Walking increased in distance and speed. The treatments seemed to help. But in late February, the left leg started to drag again, worse than before. I consulted Bratislava, but when lockdown happened in both countries, communication stopped. I kept walking as much as I could. Symptoms came and went. When restrictions were lifted mid-May, I was back to hiking the next day. It felt great, but as May continued, walks became less predictable. I felt very symptomatic indoors again. Then in June I injured my achilles’ tendon, and walking became impossible. I opted for surgery and I was unable to walk much for months after that.

In early November, I was convinced to try Madopar at the 300mg daily dose. My rationale for agreeing to try it was that it would buy me a window of six months or so during which I could research other less toxic treatments.

The drug made symptoms worse for four or five weeks, then gradually better. But because of the surgery I still could not easily walk. By late-December I felt more or less at par with how I was moving in October.

Then in late January, I happened to find the website for the Parkinson’s Recovery Project. What I read on the site made sense to me, so I downloaded the (free) books and plowed through almost a thousand pages over the weekend. On the following Monday, thoroughly convinced that a medication free course was the best course of action for me, I began to reduce the dosage I was taking. There was a withdrawal period of fifteen weeks, and by June I was beginning to feel the positive effects of being off the drugs. But I miscalculated the dosage of a sleep aide my doctor had prescribed and fell, breaking two ribs. That meant another month off my feet, followed by the worse movement I’d experienced until then. I didn’t regain where things were in July (before I fell) until at least January (2022).

Repair – February I

Tuesday, February 7

It matters, the (internal) company you keep.

Wednesday, February 8

Yesterday afternoon I had a flash of outstanding clarity. When I sat to write about it, I could only write what I entered for Tuesday. Then followed a rather strange evening.

The flash was triggered by Janice’s email response to last week’s post which she interpreted as thoroughly positive. I read the post over and she was right to do so, but some part of me resisted her reading of it. The flash was that I keep the internal company of a curmudgeon who perpetually undermines what I do and say. Recently, most of the time the friendly internal presences drown out the old fart, but for some reason (maybe Monday’s acupuncture) it didn’t work that way last night. Pacing the hall was a throwback to a year or more ago. Sleeping was all about not finding a comfortable position – all night long. Tremors were strong and random.

But also since Monday, my voice has been strong, humor intact, and rowing has been especially good.

By the time Roman arrived at five, poverty of movement had become severe, I could finish neither the rowing nor the walking routines, my mood crashed and everything felt inhibited. 

To be continued.

Thursday, February 9

Janice writes: “with PD, acupuncture can cause a dopamine high, which, when it wears off, makes a person feel worse. (dopamine withdrawal). it’s just withdrawal. you’ll be re-stabilized in a few days.”

In the meantime I feel horrible.

On the positive; I’m reminded of what I felt like 18 months ago and the improvement since then is dramatic.

Friday, February 10

This I sent to my Italian acupuncturist, regards Monday’s needling, upon request – 

Monday evening until Wednesday midday (more or less) I felt great; strong voice and energy, work on the rowing machine and with walking was especially good. High spirits, good typing.

Wednesday afternoon; severe poverty of movement set in (could still walk on my own, row for a couple of minutes).

Wednesday night; could not find a comfortable position in bed, at three I transferred to the recliner, slept in fits and starts.

Thursday; no walking unaided, speaking and writing very difficult, no appetite, difficult to maintain balance, sleep almost impossible and what I could do was in the recliner.

Friday; some walking, better spirits, terrible RLS and leg cramps. 

Saturday, February 11

I slept in bed, and soundly, on Friday night. Felt much better all day, and was able to walk the hall from time to time. RLS was horrible in the evening while trying to watch a movie. Some of it continued into the night even while asleep, but I still was able to sleep well enough to feel rested Sunday morning.

Sunday, February 12

When friends David and Birgitta arrived at five for a visit, I was at the computer and feeling quite good if you discount flawed walking. We shared pastry, and they recounted their journeys over the past two weeks with David’s grandson, Aiden. I continued to feel great until David quoted a guide they hired in Pompei on how gladiatorial games were structured. In that moment I felt my brain go numb as I entered a mindset in imitation of pause mode. Suddenly the chair was uncomfortable, I felt a bit dizzy, and my voice turned fuzzy. Examined later, I understood that the brain’s chemistry had temporarily changed in that moment and would reset itself in time. But most importantly, I witnessed as real an event I’d previously accepted only as possible and/or theoretical, I felt the difference, and understood the habits at play.

Monday, February 13

For first sleep last night I slept until 05:00, rolling and changing positions in bed more easily than I have done in months or years. I got up for an hour, walked to the kitchen ungracefully but without terrible form, and turned and reached and pivoted without having to plan every move, an accomplishment unmatched in two years. Then I finished the final, exciting half hour of a movie I was watching before I turned in, and the excitement put me back a few notches (I observed a thing similar to yesterday’s experience) and a bit of RLS kicked in again. But the whole hour was as close to symptom free (the sole exception being the hobbling walk) as I have had since this adventure in recovery began two years ago next week.

But even more significantly, I was (and am) in high spirits, and this early morning the mechanics of recovery seemed blushingly simple. The next week or two may be very interesting. Stay tuned. (Typing this was as smooth and fast as a well-thrown frisbee.)

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.