Category: Recovery

I’ve been struggling to find a way of chronicling what is going on as a result of my engagement with the Parkinson’s Recovery Project. I don’t want to write about the hypothesis and techniques involved, Janice Hadlock, the Project’s founder and principal practitioner, does that far better than I could ever hope to do. But without covering that ground, it’s difficult to talk about my experiences at all. So, I’m just going to write about my day, and perhaps an accumulation of days will express a process of recovery and healing.

Recovery and healing rarely travel in straight lines, no matter what the situation, and a record of my days (not all of them, but perhaps Sundays) won’t necessarily look like a healing to the observer, but rest assured, something positive is unfolding, and hopefully in a month or two that will become more apparent.

First of all, my left foot is still in pain from the surgery on the Achilli’s tendon of last summer. The pain is not in the tendon, which is, I am told, a good thing, it’s to the inside of the ankle and prevents me from walking. I’d been able to take four walks this week, the almost flat and partially macadamized route to the cliff at San Giovenale. But the foot doesn’t respond well to daily use. So, when I am crazy for a stroll, I have to content myself with pacing the apartment. That has also become the only way I can get to sleep at night; pace for twenty minutes and I’m down as my head hits the pillow, neglect it and my body waits until I get up and do it. And that was the case last night. I was tired, I went to bed, dozed for like four minutes then lay there with no interest at all in sleep until I got back up and walked the walk. It was a lousy walk, the left foot hurt with every step and I was wobbly as hell, but it did the trick.

This morning my early task was to write my friend Giuseppina whose husband Franco is a retired acupuncturist. At the first Italian language performance of Colloquia in June 2019, the audience hung out after curtain call not content that the evening had concluded. So, first Giuseppina, then Franco, stood and made extemporaneous speeches about the power of theatre in building communities. I could not have been more astonished. So yesterday when acupuncture came up in conversation with my American friend Candace, and as I watched myself reject the possibility that Franco would agree to give me treatments, I finally connected my need with their post-show speeches, and understood that I was just being shy. I messaged Giuseppina on Facebook. She wrote back immediately and Franco will make a house call tomorrow afternoon. Acupuncture has been remarkably effective in relieving pain before, so my hopes run high.

A few more tasks like that brought me to lunch. I’m sick of my own cooking. I want to walk, yes, and to an eatery where I can sample someone else’s version of lunch. But the ankle was bad and I knew a walk would be unpleasant and counterproductive, so I fixed a salad. Now eating is among those activities that can (but not always) cause my nose to run, and such was the case at lunch today. I blew my nose between bites at least a dozen times, then – had I been counting – I lost track. That enraged me, and by the time I finished, I was ready to throw things. Laundry was next, so I contented myself with kicking a plastic clothes basket a few times while shouting expletives. Then I lay down in the sun that streams onto my bed in the early afternoon.

Once I’d relaxed a bit, I tried doing some of the techniques relating to recovery, but after a few minutes I dozed. I woke to one load dry and a second ready to go in, so I did that and lay down again, this time at least touching more firmly on the techniques. My legs didn’t contract as they have been doing when I lay on my back, so I ended with a silent thanks.

After laundry was put away, I hobbled to the study to see if I could work. Now, the week was marked by the arrival of Apple TV on Wednesday. On Thursday, I was limber enough to physically set it up, and watched Cinema Paradiso because I stumbled across it. There were no subtitles, but I wept and sobbed my way through just the same. Friday afternoon, I watched The King of Hearts and realized that I’d formed crushes on every actor in that film way back in the early seventies, and had not recovered even a little in the decades since. But my goal was to watch The Dig.

I found the film on Netflix on my computer, but it would not show up on the tv. So, I tried AirPlay, and Mirroring, and whatever else was suggested. Nothing worked. I wanted to walk off my frustration, and that I couldn’t increased it. I finally tried streaming the film from my phone to the tv, and got the message that I had to use the television app instead of the phone app. Then something odd and wonderful happened. Because I had let the film play for a few minutes on my phone, it was now listed on the tv as “recently watched” so I chose “play from beginning” and the rest was history.

However, all those attempts at coupling computer and tv seemed to have had a negative side effect. Since my first effort at media magic, when I’d come back to my computer all the windows on the external display were screwed up, repositioned, and resized. This had never happened before, and as I keep a lot of things open, it is incredibly tedious to put everything back. Once I’d found the workaround for The Dig, I shut off all mirroring or streaming options to prevent the windows from going nuts again, but this morning when I logged on, everything was chaos.

This afternoon after a raging lunch and laundry, when I sat to work the windows were all screwed up, again. Need I mention that this enraged me? And I wanted to walk it off, couldn’t, so I screamed a lot and eventually found a little app that will probably fix the problem.

Two things are almost guaranteed to annoy me beyond reason; petty and bothersome bodily malfunctions and problems with electronics (many years ago it was typewriters that would make me ballistic – go figure). Today, I got a triple whammy.

One of the central tenets of Recovery is that the “patient” feel safe. Sometimes that means finding peace with things emotional. Friday, it was hole-in-the-heart sadness. Connect the dots. 

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