Parkinson's Disease and the Vancouver Canucks: The Trouble with Winning

Canadians seem to get excited about very few things. We are proud, but typically in an understated, apologetic, less than enthusiastic way. When it comes to things like flag-waving, oaths of allegiance (do we even have one?) and our national anthem, we lack the exuberance of our southern neighbor. We rarely make a lot of noise, considering it brash and evidence of unseemly bravado. But when it comes to hockey, our nation throws off its reserved demeanor, lets out blood-stirring cheers and expresses its partisan pride to the surprise of almost everyone. Perhaps it is because hockey brings out the heart of our great citizens: a rugged, hardworking, heads-up sort of people who are fiercely independent yet capable of working cooperatively with almost anyone. Or maybe "hockey" (the origin of the game's name is unknown) is just the kind of simple game that requires ice skates, a curved stick and the ball with 2 flat sides called a "puck" (origin unknown), which evolves in a cold climate with wide-open spaces big enough for an ice "rink" (from Middle English for "an enclosed area for a jousting competition").

Hockey is Canada's game. It was invented, popularized and made into a professional sport in Canada years before it was played seriously elsewhere. Right now, the Vancouver Canucks are on top of that game, leading all 30 teams of the National Hockey League. Maybe it is not so extraordinary, given that over half of all NHL players are Canadian (less than 25% are American). Perhaps Vancouver was stirred by hosting the 2010 Olympics last year and showing off Canada's passion by winning gold medals for both men's and women's hockey for the first time in Olympics history. Regardless, Canadian fans seemed to be bursting with national pride while standing as King of the Hill in their national sport.

But there is a problem with winning. The ecstasy of winning evaporates when it is not repeated. Choose any "winner" and sooner or later he or she will fall from the victory pedestal. The choruses of praise can turn to discordant boos and, despite what we know to be inevitable, that "all good things must end", we cannot seem to sincerely embrace a "loser".

And that is the problem with Parkinson's disease. For instance, there is some statistical evidence to suggest that a disproportionate number of "Type A personalities" end up with PD. They are used to being winners, but are then told they will face a future of numerous notations in the loss column. They will likely lose steadiness of hand, suppleness of body, stamina, sleep and stability. In some cases, this unpredictable disease often threatens one's confidence and sometimes dishes out cognitive confusion. Undergoing a series of these bubble bursting losses is often the equivalent of a career-ending injury.

As I enter my 6th "season" challenged by PD, I have become convinced that there is a great need for compassion for those dealing with losses. Who will inspire the "losers"? When our "game" is over most of us will have suffered significant and even embarrassing losses. Few of us will pass through our allotted days unscathed. Those who do, the "winners", will have missed out on the depth of human character that is formed by defeat. Frightening as it may be, we all know in our hearts that hardship in life can foster either greatness or devastation, each forged in the furnace of failure.

Winning in hockey is dependent on one thing: the number of goals scored. Everything else is secondary. There must be a winner and a loser. We all love to win and hate to lose. In fact, if one listens to the cheering crowds (and Vincent van Gogh and Vincent Lombardi) they would have us believe that, "Winning isn’t everything, it’s the only thing". But in the game of life that is just not true. We who are confronted by the apparent indignity of disease and its consequent losses are being given a great opportunity. It is a calling to compete with courage, to learn from our losses and to offer those lessons to others who walk with us or follow. In life, as opposed to hockey, it is the losses that count the most.

I see wisdom in the words of Wilma Rudolph, the first American woman runner to win 3 gold medals at a single Olympics. She said:

Winning is great, sure, but if you are really going to do something in life, the secret is learning how to lose. Nobody goes undefeated all the time.

The Adventure of a Haircut

The scissor blades opened and silently lunged at the gray hair over my ear like an angry sparrow dispatching an unlucky insect. Tufts of gray fell to my shoulders. As the silver jaws hovered slightly again before swooping in for another bite I wondered if the desired target had been hit or was the subject of repeated attempts. Instead of cringing with each strike of the shears I chose to close my eyes, hoping my blind faith in Milan, my assigned haircutter, had not been misplaced.

Milan, I had learned, was originally from what was Yugoslavia before the war tore it into pieces. He fled leaving behind his past, his friends, his family and, his eyes told me, his heart. He was part of the Serbian culture, smiled rarely and still spoke with a sad, heavy accent. He looked like “Doc Emmett Brown” (from ‘Back to the Future’)…except there were sandy-colored streaks through his swept-back gray hair. From the neck down he resembled the Eastern European immigrant he was. He wore a no-longer stylish, foam-green shirt and an unmatched pair of forest-green pants cinched in too tightly at the waist with a belt that looked every bit as old as Milan himself.

Milan was the only male worker in the hair salon into which I had wandered. When asking about the chance of getting a haircut without having an appointment, the carefully coiffed pensioners (both beauticians and patrons) all looked at him. One stylist, with a hint of a doubt in her voice, said, “Milan can help you”. Milan hesitantly stepped forward, looking anything but confident. Despite being in his late 60s I wondered whether he had been cutting hair for long. Perhaps he took it up after retiring to keep busy and earn some supplemental income. Whatever, how bad could it be?

Haircuts for me are often a leap of faith. I often too busy to have the same person cut my hair twice in a row. So each time I need to explain about the ‘cowlick’ above my forehead, how much should be left over the ears and whether the back should be blocked or tapered. I remove my glasses. Then I tell him or her about the need to remove my hearing aids for fear of them being shampooed, sprayed or snipped accidentally. Once extracted from my ears I am left in silence like a deaf and blind lamb to be sheared. Add to that my Parkinson’s tremour and it is easy to understand why I wait two months between haircuts.

Despite Milan’s unorthodox style of snipping, his other moves seemed generally what I expected. That is except for one thing. He held his right hand awkwardly and moved it slowly to catch up with his left hand, which he used for cutting. At first I chalked it up to his age, or maybe arthritis, but as he continued, and I squinted to see better, I noticed a slight tremour in his right hand whenever he tried to hold it still. Suddenly, it all became clear as I recognized the all-too-familiar movements and counter-movements. Milan, like me, had Parkinson’s disease.

I never let on to him that I knew about the PD. I was not sure that he knew, or wanted anyone else to know. I did not want to embarrass him and I was fairly sure that it would be a career-limiting disclosure if it were announced in the presence of several overly-attentive women sitting with nothing to do while waiting for their nail polish to harden or their blonde and red streaks to set. I simply tipped him an undeserved 25%, for which he seemed grateful, though a little mystified.

And the haircut? Well, it will grow out.



The Curse of Cruise Control

Too fast! The sign said 30, but a split-second glance at my speedometer read an alarming 60. Big Blue, heeled over as if crouched to enter the tight curve, I felt like I was tucked into a bobsled rather than riding my 850-pound motorcycle. I clutched the handlebars with all my might, as if squeezing them might slow down the bike as it careened into the corner. I knew I could not touch the brakes for fear of skidding out of control on the gravel sprayed like marbles across the pavement ahead. Some thoughtless trucker had recently cut the corner by dipping into the loose shoulder, leaving behind a heart-stopping hazard for any two-wheeled traveler.

Gritting my teeth, there was no choice but to ride it out, hoping the banked road would carry me through the corner. I was afraid to breathe as I pushed the bike closer to the ground while slipping higher on the seat to balance out the centrifugal force. It was a seemingly counter-intuitive move but necessary if I was to avoid permanent road rash scars, bruises, broken bones or worse.

What was the cause of this near-disastrous circumstance? Cruise control. In days gone by I would have been riding with my hand on the throttle ready to instantly respond to any threat. But due to my Parkinson’s disease my right arm stiffens and cramps more quickly than it used to, making the use of cruise control a great alternative. I regularly default to cruise control comfort when driving a 4-wheel vehicle and my right foot starts aching and shaking from trying to maintain a fixed position on the gas pedal. But this time I had miscalculated the tightness of the corner of the freeway exit, and failed to anticipate the gravel danger on it. I had waited too long before taking back control and was going too fast for a safe trajectory through the curve.

This near-disastrous motorcycling mistake could be a metaphor for my life. For most of my life I have tested boundaries, tempted fate and trusted the world and my own ability to cope with unforeseen. Despite appearances, I was never a committed thrill-seeker or daredevil. I always did crave adventure, reaching beyond the comfortable. It was not so much for the adrenaline rush, but for the challenge of pushing past the perimeters and ignoring the margins that purported to keep life "safe". It was ‘leaving the cruise control on through the corners’.

Despite my aging and its capacity to emphasize vulnerability, I still find myself relying on cruise control in many areas of my life. At work, I set goals to slow down, only to get caught up in the calling to be "legal counsel", which has led me through many adventures over the past 30 years. Physically, I forget that I can no longer maintain the same cruise control speed, endurance or dexterity that my body once permitted.

As difficult as it may be, and as contrary to the way I seem to have been "wired", I feel a deep need to regain control over the throttle of my life. The "machine" I was given at birth needs to be more careful about cruising close to the redline. Parkinson's disease demands a slower pace. I know that if I am to navigate the many challenge-strewn corners that in all likelihood lay ahead, I must the times to cast off the curse of cruise control. I must, somehow, be convinced that slowing down does not mean I am giving up, resigning or copping out. The road ahead insists that I intensify my efforts, take back control and challenge the curves without the help of cruise control. But the question remains, "How?"

Parkinson's Disease and the Constant Call to Courage

A King with a stutter is an unlikely story for a movie. And yet, “The King’s Speech" is a powerful, Oscar-winning lesson to those of us who have a tremour rather than a stammer.

As was discovered by King George VI under the tutelage of Lionel Logue, fear is a powerful enemy. It spawns real disability. Like fascism, which was the free world’s enemy of the King’s day, there are always insurgent agents of fear that must be conquered. Especially for those confronted by an incurable, debilitating disease.

Greg is a salesman and he is good at what he does. But at 51 his recent diagnosis of Parkinson’s disease has left a myriad of questions. How will his audiences and clients respond to his stiff movements, his shaking hand and arm, and his eroding confidence? How will he handle his new self-image? Having never met before, Greg and I shared a coffee and discussed our common struggle to overcome a declining sense of self-confidence that comes from feeling less acceptable in the fiercely competitive business worlds we serve. For him fear has become a participant in each sales call, a nagging doubt in each negotiation, and uneasiness in each casual interaction.

Like Greg, every time I engage in negotiating a contract, enter a courtroom to argue a case, or stand up to speak in front of an audience, the reality and power of my "disability" leap into my mind. I hear the unspoken questions. I see the quizzical expressions and sidelong glances. They all speak to me in what seems like sneering fear-inducing tones. And then there is the voice that whispers in my ear, seemingly loud enough for all to hear, "What are you doing here? People are wondering what is wrong with you? They see your tremor. They notice that you can no longer write notes, barely scratching out your signature. How can they have confidence in you? How can you have confidence in yourself?" A cold bead of sweat slips down the back of my neck, running down the channel next to my spine. Fear plants a foot inside my gut. Stepping down hard it refuses to yield to my pleas, “Leave me alone! Let me do my job as I have done for 30 years.”

The King, Greg and I have each needed courage. Perhaps all humans do, or will at some point in our lives. Courage is a key to many issues. Not the strutting stuff of movies or front-page news. It is the quiet, unassuming (not self-aggrandizing), inner courage to fight the fearsome demons that would keep us cornered, cowering and useless. But where does courage come from? Where is it stored for use when needed? How can courage raise its voice and shout, "Be gone!", to mounting panic?

For those of us who face the daily challenge of stiffened limbs or an endless tremor, it is not enough to dig down deep into a well for a bucket of bravery from time to time. For us, fear becomes a wave-after-wave attack of apprehension seeking some small crevice through which to crawl into our minds. Courage, for us, must be constantly drawn upon, like an intravenous supply of life-giving liquid.

Courage is a matter of the heart, as the word itself comes from the French word, "couer", which means "heart". A brave and strong heart is not created by some genetic predisposition. It is given its character, its DNA, by the encouragement and affirmation of others. It develops with the discipline and nurture of teachers, parents, friends and those who love. But that is not enough. A brave heart must be tried and tested, like a rope woven from strands contributed by many. Courage, as an act of the will, can overcome its smug and comfort-seeking cousin, cowardice.

For those who live in the land of Parkinson's disease there seems to be a constant call to courage. PD will require a great deal from each of us, perhaps more than we think we have to give. And while this damnable disease may shake our bodies, stoop our backs, stiffen our frames and mask our true expressions, it will not take our hearts if we will  fight with courage.

The Price of a Little Adventure

Today, as I was leaving home late to go to the office at 10 AM, it was 3°C (for those of you in the non-metric world, that is 37.4°F). A little above freezing.  Even the "banana belt" of Canada, the Vancouver area where I live, can have cold winters.
As I drove down the road, my fingers felt as stiff and as brittle as popsicles despite the fact that I was wearing gloves. It was a "damp cold", which felt much worse than the actual temperature. Even though I was dressed warmly it seemed to cut through my coat and shirt, taking my breath away as the cold crept through me.

I carefully watched the road ahead for ice, left over from last night's freezing temperatures and the morning frost. But, for the most part, the friction of speeding tires seemed to have warmed the highway, now steaming in the filtered sunlight. While icy puddles had formed in the shadows on the road's shoulder, there appeared to be no significant risk of hitting ice on the freeway itself.

Regardless of the reduced peril, I clutched the handlebars tightly, my right hand and arm stiffening against the cold, the Parkinson's tremors accentuated by the biting of the wind. I hunkered down behind the windshield; my helmet still being buffeted by the early March gusts crossing the highway where it was not lined by trees. It will likely surprise no one that I failed to see a single fellow biker on my 20-minute trip to work. But the sun was out, albeit weak and only temporary.  I was anxious to ride again, to experience the thrill of being powered down the highway on two wheels, braving the elements and enduring the surprised and scornful looks of commuters, shaking their heads as they enjoyed their climate controlled vehicles.

I, too, began to wonder why I had somewhat foolishly ventured out on such cold early spring day. But my grasping for some logic or sanity in that decision was short-lived. Riding "Big Blue", my 2007 Gold Wing, with its 1800cc’s of quiet power, was purely an expression of my passion for a little adventure. It brought a smile to my face, and a lighter step through the day. Even my late night ride home through the rain and the dark did not dampen my enthusiasm. Any day I get to ride is a good day. It is a day when my Parkinson's disease is almost forgotten, banished from my brain by better thoughts of past and future adventures astride the two wheels of my touring bike.

Despite, or maybe because of, having a degenerative disease, there are plenty of experiences to generate joy. There is an abundance of adventures; a passel of passionate pursuits. With a little imagination, we can all try to escape the entrapment of our current cycles and circumstances. Sometimes we just have to be a little crazy.

Swim outside in the winter. Ski in the middle of summer. Run in the rain. Suntan in the snow. Have a picnic in the park at midnight. Stay up all night playing Monopoly with friends. Take an imaginary journey through a country picked randomly from the Atlas, like Azerbaijan, Burundi, or Comoros. Phone a relative or acquaintance that you have not talked to in over 10 years. Sleep on the floor in front of the living room fireplace one night.

The price of a little adventure need not be high. Life is too precious, too short, and can be too predictable. Why not try something a little outrageous? Something that shouts, "I am alive!"

The Thorn in My Thumb

How easy it is for the trivial to trump the significant.

Saturday was unusual. Instead of the typical late February rainy day, it was snowing. Rather than reading in the family room beside a warm fire I was straining and slipping down the barely discernible, steep trail to the Salmon River behind our house. Making my way through the leafless and frozen scrub should have been easier than it was in the full foliage of summer a few years ago when I last made the descent. But my Parkinson's disease was more in command now and, taunted by the cold, made the going tougher on the frozen ground. Big snowflakes were being blown in my face by a gusting, icy wind, reminding me it was -10° Centigrade (14 Fahrenheit) with the wind-chill. It was a temperature I was used to when I was young, but now found difficult to ignore.
Despite the weather, the terrain and the effort required, it was a delightful time. I was seeing the sights and the swirling snow through the gleaming eyes of my 2-year-old grandson, PJ. To him it was an adventure of epic proportion, never before experienced. He needed little coaxing as he walked beside me on the flat parts holding onto two fingers of my left hand. Even when negotiating our way down the switchback path to the water he was content to hold my hand. It was only when he encountered the thatched maze of bush branches and fallen trees that he wanted to be carried.

The Salmon River is really not much more than a shallow creek. At this time of year the water is slow-moving enough to be frozen over in some places as it tumbled and twisted its way through the small valley it had formed over the years. We looked for the fish that had been plentiful during warmer months. But finding none PJ and I laughed in the simple pleasure of splashing down the creek bed in my tall rubber boots while he rode in my arms like a prince being ferried across a ford in a river.
While getting down to the river had been somewhat difficult, returning up the slope toting my grandson through the winter jumble of the once well-kept path had me sweating and struggling, resting every few feet. I felt every one of PJ’s 31 pounds, and every day of my 58.7 years. It was then, grabbing for branches while balancing on the incline, that I felt the sharp piercing blackberry thorn enter my thumb.

And there it remains, or at least part of it. The small spike is buried, invisible, somewhere below the surface, evidenced by only the slightest red spot on the surface of my left thumb. Despite its size, it announces its presence constantly.
Life seems to be strewn with its fair share of thorns. They are often invisible and impossible to dislodge but they can cause no end of discomfort and even pain. How can such small, trivial matters sidetrack our attention?

It seems to me that much of life is commandeered by trivia. It is the small things that seem to shanghai our best intentions. But maybe, just maybe, these tiny irritations can be a blessing, a reminder of something or someone important. In my case, the thorn in my thumb gives tribute to the priceless treasure of an hour one wintry day spent exploring the wonder of my backyard world with, and through the eyes of, my only grandson.

It’s Three in the Morning and He Has Returned

Luminescent green and blue eyes peer at me from the dark corners of the room. I am surrounded by the silent denizens of the night. I move cautiously, watching for shadowed shapes in my path. The eyes, gleaming stares, seem to follow every stiff, shuffling move I make. The bedside digital alarm clock noiselessly announces that it is 3 a.m. My night stalker has returned.

I will not turn on the light despite knowing that flicking the switch would send the eyes soundlessly scurrying from sight. These nighttime observers are my friends, silent sentries that keep the vigil with me, doing their duties in the dark. I am comforted by knowing they are there.

It is an oft-repeated ritual. Some hours before I had plodded upstairs to bed with barely enough energy to engage in the pre-sleep necessities that pay homage to losses that attend my age. I begin by setting out clothes for the morning, deciding whether I should start with the tie that I want to wear and then match the rest of my meagre wardrobe from there. After I glance at the confusing choices of colour, pattern and width, I usually give up. I should weed through those ties someday, but I cannot seem to shake the notion that one should never throw any out that are currently too wide, too narrow, too dramatic or too plain as the styles always seem to cycle back. Most often I default to first picking the next pair of pants in the closet "line up", then shuffling through my shirts to find a match. Belt and shoes are next, followed by the inevitable search for socks that share some shade of colour with my pants. All this decision-making so I don’t make too much noise struggling in the half-light of the next day’s dawning.

Next, I usually remember to take my meds. Only three pills to take at bedtime, always wondering if they actually are needed given the absence of any PD tremour or stiffness at night. I set out the five small tablets for the morning in silent acknowledgement that I am often in such a preoccupied state that I would forget them if they were not directly in my line of vision in their Sunday through Saturday AM and PM pill box on the counter the sink.

That done, I slip between the sheets and settle into my habitual starting position, only to be reminded of more aspects of aging. My hearing aids squeal their displeasure and my glasses press uncomfortably into my face at being crushed into the pillow. With those removed I feel vulnerable to the blurred and silent darkness as I turn off my bedside lamp. Oh…one more device reminding me of disability; my night guard. Without it my nocturnal grinding would soon erode my teeth to stubs.

Sleep follows immediately. But it is inevitably temporary, as if some old angry enemy awakes me at the stroke of 3 AM. Rarely is it nature calling, as bladder control is not a part of the list of symptoms on my personal list of Parkinson’s problems. Maybe it is timed to the intensity of my dreams, often vivid but rarely disturbing enough to be remembered or retold the next morning?

What to do then? Lie there in frustration staring into the darkness? Or do I traipse downstairs in defeat, resigned to the time-tested truth that sleep will not return for at least another hour? After a short self-assessment, and trying to recall whether there are appointments early in the morning restricting my freedom to sleep in a little, the decision is made.

Insomnia is a tyrant that tortures body and soul. Perhaps it was the earliest sign of my Parkinson’s disease when, years ago, it first stood uninvited at the foot of my bed. Regardless, I soon learned that its favourite strategy was to frustrate me to the point of anger at the unproductive hours I spent staring at the ceiling, mind churning. My counter-attack was to act. If it was a panicky thought about something I needed to remember I made a note on the glowing screen of my Blackberry that was also “sleeping” within reach on my bedside table. I have learned to quit chastising myself with thoughts like, “Just forget it and go back to sleep!” That, I knew from experience, was the very effective reverse psychology implanted in my thoughts by the enemy.

Getting up, reading, making lists of what is on my mind, responding to emails, texting a far away friend or family member or drafting a blog entry are some of the ways I fight back. I deal with the scourge of sleepless hours by making them useful. In doing so I find my initial resentment turns to the ability to return to rest, knowing that my nightly visitor cannot claim victory.

It is now 530 a.m. This post is finished. It may not offer a solution for many, but it has worked for me once again. Time to head back to bed.  Now, if I only had night-vision glasses to avoid walking into the door I had closed.