Month: February 2023

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.