Monastic Musings on Parkinson's

The meal was eaten in silence. That is, except for the reader. He was perched above us in a small balcony protruding from the wall about 8 feet above the diners. Thirty or so members of the Benedictine community sat silently on simple wooden chairs on the outside of the U-shaped table arrangement, eating and listening to an echoing essay about the Roman Catholic church in Africa. Supper was comprised of bread, salad and a rice dish, with applesauce for dessert. Not being a social gathering, it was over in about 25 minutes. The food was plain, but tasty, and certainly adequate, much like the room in which the meals were eaten. It was 25 feet high at its steeple peak, covered with wood paneling rising from colored concrete floors to windows through which beamed the unusually warm January sunrays. A vibrant, iconoclastic style mural of Christ and his disciples filled one end of the hall, evidencing a reverent and loving dedication of thousands of hours of painstaking attention to detail. I have always been honored and humbled to be eating with these men who have voluntarily surrendered many of what we would call modern life’s benefits. Father Placidus, Father Mark, Brother Luke and Father Abbot John welcome me despite the fact that I am not a Catholic. This is a community that lives St. Benedict's vow of hospitality.

This setting, Westminster Abbey in Mission, British Columbia, has become a place of refuge and peace for me for more than 25 years. I come here to a world that has no rush hour, or rush at all, to step off the treadmill for a day or 2, or more. The guest quarters provide the rudimentary comforts; a room with a bed, a small desk, chair and a lamp, and bathroom, but no more. It is here, in relative silence, beauty and solitude, that I come to think, read, write, plan and pray at least a couple times a year. I have never found a place that is better for these contemplative activities.

It took me a while, and still does each time I come here, to get used to living without the constant barrage of noise, distraction, people and obligations. I recognize that this may not be everyone's idea of a good time. But this is the place where I can unbundle the many applications that I have concurrently running on the hard drive of my life. It is a time of retreat. A time to refresh, reboot or defrag, if you will, for the onslaught of spam, viruses and phishing to which I will return.

Perhaps, most significantly for me, this brief repose gives opportunity to consider the important, instead of just the urgent, matters of living. Since being diagnosed with Parkinson's 4 years ago this month, I find I need and value these times more. Perhaps it is the fatigue or vulnerability caused by the disease. But whatever it is, these times alone at the Abbey provide a much-needed rest stop in the race I run.

I have found that, while the 2 activities may seem similar, there is a significant distinction between isolation and solitude. As people with Parkinson's it is often easier for us to isolate ourselves rather than face questioning looks and the seemingly inevitable embarrassment of social interaction. But solitude is not hiding. Rather, it is meant to prepare us for engagement with life as fully as it can be lived. But without time for contemplation, how can we determine what it means to live fully?

I wonder why we are so often afraid to be alone with ourselves in silence?

Parkinson's and the Dentist's Chair

Going to the dentist is just one of those necessary regular visits I must make that increases the visibility of my Parkinson's symptoms. It confirms that I have to keep my sense of humor.

It was quite obvious that neither Michelle nor Dr. Ray looked anything like Dr. Inkster, my dentist when I was 8. And little about this morning's current surroundings bore any resemblance to the second storey walk-up office with its brass plate announcing that the tiny waiting room belonged to Dr. J.F. Inkster, D.D.S. Inside there wasn’t a single magazine a kid could read to calm his jangled nerves. In comparison, Dr. Ray's office was bright and modern with an open airy feel, no internal doors (except for the bathroom), skylights and large windows with a street level view. Hundreds of magazines from Reader's Digest to Golfer's Digest waited in his spacious waiting room that had a special corner dedicated to kids.  The sights, smells and sounds of dentistry have changed dramatically in the past 50 years.

Despite the changes, I still suffer from dentophobia. I shake when I sit in what always seemed to me to be a converted barber chair, staring into a light that could do double duty at Yankee Stadium. The flow of adrenalin always accelerates as I get elevated and reclined at the same time, and then told to "relax and open wide". The major difference between my childhood experiences with the dentist and present is that I don't know if I am trembling out of fear any longer or just because of my Parkinson's Disease. Maybe it is both.

Despite the easy conversation skills of both my young dental hygienist and dentist (do they learn that in school?), I am still totally unable to control my tremors. My right arm jerks like that of a marionette controlled by a hidden puppet master. It is more than a little awkward sitting on your right hand when you are lying down in the grip of a sculptured lounger. My right leg immediately gets as stiff as a mannequin's, with my foot looking pointed as if it was caught stretching out the Achilles tendon. I try to relax. Michelle is more than patient as she checks and cleans my teeth. But try as I might, I return to my stiffened and vibrating condition within moments.

Dr. Inkster had a humorless disposition and could not carry on a conversation with an 8-year-old to save his bicuspids.  Despite the open window an ether-like odor permeated his old dental office. To compound matters, Dr. Inkster did not wear a mask.  A kid didn't have a fighting chance against his smoker-stained breath. Surely a dentist would know what it is like for me to be forced to breathe in (through the nose due to various paraphernalia occupying my other breathing orifice) someone's halitosis emitted from yellow stained teeth for what seemed like several hours. It was hard to hold my breath that long. Despite my impaired ability to smell, I would not notice anyone's bad breath even assuming they have any, I do catch a whiff of the peppermint goo Michele puts in trays in which my teeth take their fluoride bath. But the scent is not enough to compensate for the feeling that I am slowly drowning when the sludge starts draining down my throat as I accidentally squish my teeth together.

Evaluating the situaion, I think it is the high-pitched jet engine whir and whine of those dental instruments of torture that bring back my terror and set off my tremors each time I enter a dentist's office. In some ways, not many, it is worse now than in Dr. Inkster’s office. In the old days, the dentist would remove the instruments from your mouth long enough to allow you to breathe and lean over to spit into the white, round porcelain, permanently flushing spittoon. Nowadays, no sooner do they remove one set of tools from my mouth than they are replaced by a small but powerful replica fire hose squirting high-pressure water point blank onto totally sensitized teeth. When it gets pulled out a small chrome wet/dry vac takes its place, attached no doubt to some 250 hp suction-producing motor in the other room. I feel a desperate need to swallow or somehow hide my tongue lest it be sucked out or given a hickey on its vulnerable surface. It always strikes me as comical when some well-meaning dental assistant notices my vice-like grip on the chair arms and asks, "Are you doing okay?" I want to respond, "Oh yes, I could only be doing better if this were a day spa and I was having my toenails sheared off by a hammer and chisel.”

Michelle and Dr. Ray cannot help it if I become a paranoid schizophrenic upon walking into an instrument-laden cubicle with a chair that seems to only be missing its chest, waist and leg straps. It brings back vivid memories of Dr. Inkster leaning over me with a needle that was probably used for horses during the off hours and saying, "This will only be a small prick in your cheek ". After extracting the weapon from my mouth, wiping what seemed like blood from its tip with an already stained patch of gauze, he would go right to work as if the elixir he had pumped into my then throbbing jaw was somehow doing its numbing work instantly. Of course, I complained incessantly, as much as was possible with my mouth agape. But he was unyielding and refused to recognize that I was feeling every bit of the grinding, scraping and drilling he was so studiously undertaking on my defenseless molars.

Upon reflection, I am confident that the fear-based shaking I did as a kid when faced with the dental punishment for not brushing my teeth and eating too many toffee bars was just as pronounced as my tremors are now. Except that now Michele says I save her some effort as she can virtually hold the cleaning tools still as my head does the moving for her. She comments that I don't need an electric toothbrus.  I respond by saying, "True, but could you make sure you give me a left-handed toothbrush when we are finished. I am wearing the enamel off my teeth brushing with my vibrating right-handed one."

Now about the challenge of flossing...

Feeling a Little Shaky

"Order in court" the clerk abruptly announced, as if those of us in the courtroom were soldiers waiting for a commanding officer. I jumped unnecessarily, but characteristically, having become a little edgy lately due to lack of a good night’s sleep. Immediately my tremor spiked up a notch or two, setting me to vibrating like a paint can in the grip of one of those shaker machines at the hardware store. Bad timing!

Everyone stood up in traditional respect for the black robed judge who strode through the security door in the back corner.  She climbed the three steps to the dais and, half bowing, half nodding to those in attendance, unceremoniously plunked herself down in the overstuffed red leather chair behind her bench. It was 9:30 Monday morning and another day had begun in Court of Appeal Chambers. Unfortunately, the comparatively small area behind the "bar" that separated the public gallery from the remainder of the room had too few chairs to accommodate the lawyers who had gathered to gossip while waiting for Her Ladyship to arrive. As a result, there was a professional sort of scurrying that happened when she did arrive, as if the music had stopped in a game of musical chairs. I had come early and secured my favorite spot, close to the door so that I did not have to climb over anybody to get out.

As the judge's list of matters was being read by the court clerk, I felt my right leg bouncing up and down as if I was at a barn dance marking double time to a polka, while my right arm seemed to be furiously strumming an imaginary banjo. But before I could survey the room to determine who might be watching my musical miming abilities, number 7 on the judge's list was called. It was my turn.

It was not all that difficult an argument to make, but if my noticeable tremor was misinterpreted as fear you would think this was an appearance in front of all 9 judges at the Supreme Court of Canada. Sitting on my hand proved useless and short-lived as I had to stand to make my presentation to the judge. I chose what seemed to be the best alternative and used my hands more dramatically, gesturing and moving my papers about at the risk of spreading them on the floor around the small podium.

Fortunately, it took little persuading to get the order I needed, my opponent being firmer in stance but much less prepared. Áfter victory was pronounced by the judge I gathered the papers that I had needlessly shuffled, stuffing them into my black barristers bag, and marched as confidently as I could out into the hallway.

It would have been fruitless, and a little foolish, to stop at any time to explain to the court that I had not taken my medication in the morning due to my overly zealous and lengthy preparation. Although the idea of saying, "do not mind me, I am having a bad day with my Parkinson's", had crossed my mind, I was concerned it might have been mistaken for a lack of confidence in my argument that would follow. In the end I tried, without any success, to just ignore it, hoping that everyone else would as well.

As I walked out into the cold October rain I realized that as long as I was moving no one really noticed my shaking. Besides, I imagined halfheartedly, it could just be excessive shivering in the cold. But I knew that the events of the morning would increasingly repeat themselves in different environments over the years to come. It will become necessary to learn how to accept what my uncooperative body is doing, despite the likely discomfort of others with their questioning looks.

This is part of the PD progression that I have not yet resolved how to handle. Trying to hide the symptoms seems immature, even foolhardy. But it was a natural response, and I am now left wondering what other response might "work".

It was later in the day, while talking with another member of our firm, that I realized it was the bully, fear, that I need to wrestle into submission. Fear that I would be viewed as less capable, less competent, less confident; all necessary traits of my trade. Fear that all the things I had worked 30 years to build would crack and finally crumble under the influence of my own personal quaking.

I cannot live in fear, cowering in a cave of my own making. I must have faith and courage, both of which are often in short supply. Days like today prove that fear is often based on lies. I am the same person as I always have been; I am just feeling a little shaky today.

Parkinson's and the Fear of Forgetting

“How are you feeling?” I asked him too casually.

Fred and I were having coffee as the early afternoon sunshine warmed us through the large kitchen window. It was unusual weather for an October day. It was also unusual for me given that it was the middle of a workday and I was chatting, seemingly aimlessly, with an elderly friend as if I did not have any billable work to do at all. The opposite was true of course, but I had business near his home and was inexplicably drawn to stop in for a quick coffee with Fred. At his age and health, as well as his state of mind, and my too busy schedule, I was not sure I would see him again, at least not soon or be able to converse with him in the easy way we were doing that autumn afternoon.

"How are you doing?" I asked again when he hesitated in response to my question. Clearly troubled about something he slowly drew in his breath in a labored fashion. The worried expression on his face immediately made him look older than his 80 years. “Well” he said, "I am not as compos mentis as I once was. You see, I forget things. I lose things. I just cannot remember like I used to." When I responded, "Join the club!", that discussion ended and we moved on, the customary cheery smile replacing the anxious frown. But soon examples of what he had been trying to explain began springing up with embarrassing frequency. He asked me how my children were doing and how old they were four times during our time together, each time as if the queries had never been asked before. I felt mildly frustrated at having to repeat myself, and guilty about my internal reaction and impatience. When the phone rang, he tried to explain to the caller who he was visiting with. Finally, with a pained look on his face, he turned to me and said, "What is your name again?"

Although I was simply an observer, I felt Fred’s anguish, the humiliation and the discomfort with something happening that neither he nor I fully understood. It was something frightening. It was the fear of forgetting.

This episode with my friend, Fred, had an immediate impact. It beckoned memories of that same look on my father’s face as we drove along very familiar roads in the Coldstream Valley farm country where we had lived for all of my childhood. He looked at me confused and asked me where we were. It was like a jolt of electricity running up my spine.

Is this my future? Am I also destined to begin peering through a mental fog at some point? In the years to come will Parkinson's disease fill my head with cotton, as it has begun filling Fred’s mind?

How does one grapple with the fear of forgetting? Since cognitive impairment has a greater potential of striking those with Parkinson's, it is not groundless apprehension.

First, I asked myself, "Is there anything I can do about it?" The answer, like most answers given by lawyers and neurologists alike, was "Maybe". As unsatisfying as that may be, it is better than "No!". Studies have shown that regular mental exercise helps fend off the fear of forgetting to some extent. So keep those crosswords coming!

Second, I recognized that it would be unwise for me to let the fear of future forgetting paralyze the present (although I shudder a bit when I hesitate too long in order to remember someone's name). Focus on what I have, not what I might possibly lose.

Finally, I decided I needed to spend more time with my friend, Fred, and others like him. Facing one's fears, even when reflected in the face of a friend, allows us to nurture courage and compassion. Maybe it is like a blood donor donating blood on the premise that one day he may need it himself.

I was sincere when I asked Fred how he was feeling. The least I can do is hang around for the answer.

Deer in the Headlights

There were fewer than 100 attendees arranged around tables in front of me as the lapel mike was clipped onto my shirt. They were mostly seniors (a rank I will soon achieve, or have entered at some restaurants), none of whom I knew. Even so, I strained to discern the emotions in the eyes staring at me. Fear was what I saw. Faced with that observation, what could I say? Of course there was fear. They had recently been diagnosed with Parkinson's Disease and were attending the "New Diagnosis Seminar" sponsored by the Parkinson's Society of British Columbia. And I was there to talk about living with PD, the topic of this blog and an all-consuming focus for me.

Encouraging the small crowd was a challenge. It is difficult to convince those who's world has been rocked by news that there would be extraordinary challenges ahead. Some days might be tear-stained, painful and dark. At times a sense of hopelessness might creep into the mind and seek to blot any sunshine or smile. I knew the sense of isolation and dread that simmered just below the surface. Even those who just came with loved ones who had been diagnosed with PD were asking the question (whether aloud or in their hearts), "What do I do now?" It was the reason they had all come.

This was no time to entertain with platitudes or make shallow promises. I wanted to inspire. I was incredibly inadequate for the job, but I knew that I had to do my best. Words have great potential. They can be powerful. As Buddha apparently stated, "Words have the power to destroy or heal. When words are true and kind, they can change the world." Strangely, I had been looking forward to this moment. Perhaps it was because it required me to test the mantra of this blog: we can live positively with Parkinson's. Would that sincere suggestion, that call to arms, be enough to rally the sinking spirits of those in the audience. It is not enough to believe what I was saying; it had to be a part of me. Those listening would know if it were nothing but hypocritical hyperbole.

The strange thing about speaking engagements is that you never really know how well or poorly you did. The applause may be flat or overdone. Those who speak to you after may be falsely flattering. There is no litmus test for a well-done speaking engagement.

And if I were looking for some sudden salvation result, those I talked to afterwards still had the 'deer in the headlights' look in their eyes. But they were simply betraying a feeling I still have and try to confront from time to time. There is no easy way to replace the neurologist’s declaration that it is 'positively Parkinson's' with the determination that you can live with Parkinson's positively. The diagnosis can deafen us and often drowns out the positive. Regardless, we are left with one decision: How will we live with this?