January 31, 2021
I have kept it no secret that I was diagnosed with Parkinson’s Disease in May 2019, just as we were beginning rehearsals for Colloquia. Due to budgetary concerns, I had decided to direct the Italian language version, a choice I regretted as soon as I realized that, except in a very generalized way, I couldn’t really understand what the actors were saying – despite the fact that I had gone over every word that Andrea had translated from the English.
Hence, most of my notes were in English. Both Riccardo and Emilio have an excellent command of the language – and after hearing me give an interview to a couple of local journalists, insisted that my Italian was good enough to function in rehearsals – but I couldn’t think in Italian as a director, and the diagnosis had made the PD symptoms stronger, so having to translate mentally from English in order to give notes in Italian was a steeper expenditure of energy than I had to draw upon. Fortunately, the actors connected well to the material and with each other, so we pulled off a series of good performances in the end, regardless of how present I was during the process. Which was not very.
The next year or so was spent trying to come to grips with my new reality. Friends with experience in observing or treating the syndrome had intimated, or outright told me, that signs were apparent much earlier than the official diagnosis. I offered the possibility of having the disease to a number of physicians along the way, none of whom agreed. I finally changed primary care providers. When my new doctor ordered an MRI, it was a bit of a victory, but from tests made in his office he was still skeptical. It was only because he happened to see me trudging up a hill one day that he changed his opinion and ordered a DAT scan, that is, one more likely to demonstrate the possibility of PD – or as close as a machine can come to detecting it.
Beginning on opening day of Colloquia, I gave the go-to pharmaceutical, Madopar, a try on my doctor’s recommendation, at the very low dose of 50 mg twice a day for four weeks. The only real difference I noticed was that it immediately made me drunk, and I stayed drunk for the entire trial. Towards the end of that month, I saw a neurologist who recommended a steeper acceleration. When the higher dose made the drunkenness more pronounced, I asked my doctor if I could stop the drug. He said sure, if it makes you feel worse, don’t take it.
But I felt that if I had PD, I was obliged to have a neurologist. The one I had visited in Rome was too difficult to get to, so I filed that obligation away and turned it instead into a mild annoyance.
Then I heard about fecal microbiota transplants and commenced my time in Bratislava. I have fond memories of Bratislava. It was not a vacation, but it was a relaxing adventure. I loved my little apartment there, as bland as it was. It was comfortable, had an elevator, a balcony, and a workable kitchen. I noted at the time that were it possible to transport my temporary abode to Orvieto, I would do so in a heartbeat.
Upon returning from Bratislava, I resumed my daily hikes, but instead of their being filled with an exuberant appreciation of the changing seasons, colors, and light, I worried my way through them. I compared today’s gait with yesterday’s. I argued with the diagnosis. I attempted to come to terms with the host of discomforts I had with conventional descriptions, treatments, and attitudes towards Parkinson’s. I observed improvements in my condition, though I couldn’t really say if they were a result of the treatments I’d received in Bratislava, a bi-product of my walking, meditation, and yoga, or simply my having achieved some temporal distance from the diagnosis. One thing I could say for sure, my digestive tract had never functioned better!
Then just before lockdown, walking became difficult; the left foot began to drag, it was hard to avoid shuffling.
Walking during lockdown was necessarily reduced to circular strolls of my courtyard and neighborhood, broken only by weekly outings to shop. I lost touch with the state of the gait, noting only that it was harder to function around the house, with its myriad small steps and detailed movements, than it was to stride the streets.
When May arrived, I hit the trails again. My first few outings showed good, healthy physical and mental habits, but over a span of weeks, they became difficult to maintain. Then I hurt my left tendon, and the shape of the next seven or eight months was predetermined. A shape that was outwardly tedious, but rich with inward growth. I came to appreciate my friends, near and far, in ways I could never have anticipated. I grew used to doing “nothing”.
In October, I took a new apartment. It is bland, comfortable, has an elevator, a balcony, and a workable kitchen. Be careful what you wish for!
Ten days ago, I stumbled across an organization in my former home of Santa Cruz called The Parkinson’s Recovery Project. They offer five, long, detailed books one can download for free. They describe the syndrome more clearly, and with keener insight and intelligence, than anything I had heard before. They present PD as curable. There’s no scam. The conclusion is based on hundreds of cases over a twenty year span and solid science. I read almost a thousand pages from two of the five books over the course of a weekend. In response to the persistent annoyance at not having a neurologist, I had finally seen one and had begun a moderately low dose of typical anti-Parkinson’s drugs in November. What I read convinced me to quit before I sustained permanent damage to brain health. Desiring some guidance on how best to proceed, I found an email address. There was an attached disclaimer that due to huge volume and small staff, reply time was several months. I wrote anyway.
Within thirty minutes, I received a reply from someone who had looked at my photo, my website, and read several of my blogposts. We began an exchange, and after a few messages I realized I was communicating with the Project’s founder and author of the books I’d been reading. She agreed to advise me on the transition off the drugs by pointing me towards information publicly available in the literature. She also said that recovery was a process that needed no professional assistance (some specific techniques within Asian medicine and physiotherapy could be useful, and those are techniques the therapists I know here are schooled in), but it was vital that I be free of the pharmaceuticals prior to beginning. She said I could report my progress to her as I found helpful.
I’m about halfway into dosage reduction and the side effects have not been horrible. So, an adventure awaits. I’ve not read the book on the specifics of recovery as I don’t want to be tempted to begin before my brain is ready, but all that I’ve read to this point is sensible to me in ways that nothing else regards Parkinson’s has been. There’s naught to lose but my symptoms, and they have already reduced in the past few days thanks to a surge of positive energy (and a diminishment of worry) that has come with my discovery of the Project. I’ve shared this new beginning with several friends, many of whom have encouraged me to document the journey. So, hello there! You are welcome to follow my progress through the posts that begin here. The posts will be occasional, and probably after the fact rather than daily reports from the “front”. But I have a feeling it will be an interesting ride! Thank you in advance for your interest. I trust it will be worth all our efforts – and more.
You can read about The Parkinson’s Recovery Project at https://pdrecovery.org