Day: February 21, 2023

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).