Month: May 2021

Monday night was particularly weird and tumultuous, even during these times of unpredictable sleep patterns. Around four in the morning, I wrote Janice (Hadlock) at the Parkinson’s Recovery Project. I had already submitted my weekly report, but felt compelled to write again. This is that exchange.

“Dear Janice,

An extraordinary report for an extraordinary night. First, Monday’s events and changes.

At some point in the afternoon I was laying down on my back, I ‘heard’ a click, and something in my neck let go; the words that went with it were ‘from effort to trust’. Since then even though movement has been as hard or harder than ever, the sense of heaviness behind it has gone away; for example, I’ve been able to do swinging exercises easily that were very difficult as recently as Sunday.

However…

Sunday night I could not sleep. At around 05:00 I gave up, put on lounging clothes and made the bed so I could rest on my back. I was asleep within minutes and slept for three hours. So, Monday night I decided to rest on top of a made bed in something like pajamas the whole night from bedtime. I lay down at 00:30 and slept for an hour and a half. My left foot and calf were active (spasms, jerks, and twitches) for what seemed in my dream state the whole time, and almost without pause (the left foot had the surgery). Turning over or adjusting positions was as if I were dressed in fly-paper. At at least one point I began to tremble all over, and seemed it could become violent if I were able to release — but a good thing, however unpleasant. Dreams turned to nightmares, limbs to lead, left foot to a block of wood, and foot and calf to constantly active raw meat. When I finally woke I got up, had a bit of water, and went back to laying on covers, I was surprised that the bed was barely rumpled, it felt like it should have been chaos.

Then I fell asleep and repeated the whole experience.

Getting out of bed the second time was even harder, but once out the left foot fell quiet and even though standing and walking was painful, it was no more so than has been usual for the last few days. Typing is a little awkward but not terrible. Right arm is notably loose. I dread another session, so may stay up awhile. It all feels like more than it appears, and although my inner voice says that it’s ‘all melodrama’ something weird is going on.”

I stayed up for a half hour during which Janice wrote back.

“this is recovery, not withdrawal. so cool. congrats!

not for the faint of heart. this is your body coming back to life and starting to notice all the horrors that have been accumulating in your body as you were busily ignoring it.

this is fantastic news. yes, it can seem like the universe is testing you. but these are just the torments you’ve hidden from yourself and/or created in your mind to keep yourself obedient to the mindset of Pause.

fantastic.

and see why i get so livid when people say, ‘well, if a person recovers, probably the person was misdiagnosed’. no. no no. the stuff that happens during recovery is so bizarre. it only happens to people who are recovering from parkinson’s. and each person’s stuff is unique. this is not ‘projection’ due to having read my book. if you’ve noticed, the recovery chapters are nearly half the book. and keep repeating the theme ‘each person’s recovery is unique.’ because this is a mind-created syndrome. and each person’s mind had its own reasons, and created its own storyline. so each recovery is its own incredible event.

you’re doing great. hang in there.”

My response to hers…

“Wow, that is not at all what I expected to hear back! I sort of thought (and still hope) that there might be hints of what is going on with my feet in all of this. Well, great!  

My third round was preceded by warm milk with a splash of rum, and consisted of 90 minutes of good sleep mostly on my back, no Bosch paintings. I’m going for the vibrating chair now, then a ride to Bardano to get my first shot.  

Thanks so much for the quick response! And the great news! Andiamo avanti!”

That exchange says it all for now. I’ve been sleeping like a baby ever since – and on a baby’s schedule, too.

Look up Parkinson’s disease on the web and you will probably get a description that includes “an incurable, progressive, neurodegenerative disease of the central nervous system of unknown cause”. 

I vividly recall a textbook I was provided in sixth grade that divided humanity into five ranked categories in its description of anthropology; the most evolved of the species was represented by a bearded European and the least by a native of the Australian continent. When offered a choice between the standard definition of Parkinson’s and this sentence that I stumbled across last January, “Idiopathic Parkinson’s disease is not – and never has been – an incurable illness,” the contrast is stark. As I explored further, this new approach to the disease made more standard ones seem as evolved, and as accurate, as that sixth-grade definition of anthropology. Since the disease could not simply be ignored, why go hurdling towards a dead end when a viable alternative offers a strong possibility – not just of management or delay – but recovery?

Several friends reading my recent posts piecemeal or out of sequence have expressed confusion as to what I’ve been going through. So, without attempting to include technical detail on the recovery program itself (because I will get it wrong), here is a blow by blow timeline by way of a catching up for those who, because they care (thank you) are confused.

Various medically-trained friends have said they noticed signs of Parkinson’s in me as early as spring 2016. I first noticed an internal tremor in my right arm in April 2017. In the fall of 2018, it was obvious that something was going on with the nervous system, and I was encouraged by non-doctor medicals to seek a diagnosis. After several doctors rejected the idea, and my having to change a primary care physician, a test was scheduled for May 2019. While it cannot demonstrate the disease directly, it came back positive on its probable presence.

I was put on a trial run of a very light dose of levodopa medication, didn’t like it, and was granted my request to stop. Then followed a year of other issues and treatments, the Parkinson’s always in the background.

Last November, I allowed myself to be convinced to resume the levodopa medication at a higher dose. I figured it would give me a few months of relief from the annoyances of the disease during which I could seek other treatments that felt less toxic to me, and perhaps ones that more directly address the problem.

On January 21, I stumbled across the website for The Parkinson’s Recovery Project in my old home of Santa Cruz, California. There are over a thousand pages of material available, downloadable without cost, on a program that has cured hundreds of people of the disease. I started reading immediately and did little else for several days. On Sunday of that week, I wrote to the email address on the site to ask if there were anyone in my area who could guide me in pursuing the program. The site warned that understaffing meant replies could take months, but I figured it would take months for me to completely stop the medication in a safe manner, so I may as well write. The literature had convinced me that the anti-Parkinson’s drugs were best avoided – at least for as long as possible – and that my window in which to seek alternatives was one of weeks rather than the months I had earlier conjectured.

I received a reply in less than a half hour. After a few exchanges, I realized that I was corresponding with the Project’s founder and director, and she was already guiding me towards information that would allow me to begin working on a cure for Parkinson’s. She just this week explained that her quick response was due to my artistic background, which appealed to her, and that she enjoys my style of writing. Finally, a tangible advantage to having followed a theatrical career!

The first step was a four week schedule of reducing the anti-Parkinson’s drugs to zero. That was followed by a ten to twelve week period of withdrawals. Together, dosage reduction and the first four weeks of withdrawals were not difficult at all, and there were already signs that recovery had begun to take place by the end of that period. Then the fifth week of withdrawals hit, and from then to this past weekend (and maybe further) was about a body (mine) under siege. Every day brought with it a surprise, none of them pleasant. I was warned that the effects of withdrawal are like the disease’s symptoms writ large, but had not the imagination to understand exactly what that meant.

“The fifth week is when you hit bottom – and you stay there for five or six more weeks” my guide, Janice (aka JJ) warned me. I attributed to her a degree of poetic license. I was wrong. She was being coldly accurate. I have never endured anything like it (and am not open to discovering worse, thank you very much!)

This past weekend the direction of things began to shift. On Tuesday, my walking had improved to a degree that almost shocked me. Then, as Janice warned, I lost some of that ground. But the ravaged sleep patterns of the past weeks seem to be correcting themselves, several typical symptoms of PD have disappeared, and there are stirrings in my nervous system that are entirely new and promising. 

The road of recovery is littered with interesting symptoms, too, as the brain builds its post-Parkinsonian switchboard, but they are somewhat predictable, and generally change quickly, so while the weeks ahead may also be full of surprises, they promise to be pleasant surprises and towards a desirable and foreseeable end. According to what I report, JJ tells me I am right on track for the full benefits of a recovery. Perhaps even more significantly, Michele, my shiatsu therapist, and Katrin, my physical therapist – both for five years or more – tell me that my body has never been as receptive to treatment. There is hope on this path, and even a tenuous hope is far preferable to an assured dead end.

If you know of anyone recently diagnosed with Parkinson’s, I strongly encourage that they carefully review the materials available at pdrecovery.org before they are very deep into taking the drugs – or before taking them at all. There is a viable, real, and exciting alternative that requires a leap of faith and a commitment of time, but could leave them with the healthiest nervous system they have had in decades.