Parkinson's Disease: An Unexpected Journey

It was pure fantasy.  Old, almost classical, make-believe worlds populated by strange characters with even stranger names.  And yet it was stuffed full to overflowing with significance, like a stocking hung by the fireplace on Christmas morning.

The story is about an unassuming fellow, who enjoys his books, a warm fire, good food and casual times with friends.  He had lived what we would call a simple, comfortable life in which, apart from a celebration now and then, each day was predictable.  But the unpredictable happened.  Shock, frustration, denial and confusion flooded into this unsuspecting character’s life, and in the process swept away his innocence and uncomplicated existence. 

“The Hobbit” was written by J.R.R. Tolkien 75 years ago.  It has taken Hollywood that long to do justice to its imaginary tale.  Its story is both simple and complex, suitable for children (except the very young or overprotected) and challenging for adults.  It portrays both evil and good, but recognizes the shadow of one in the other.  It shows the wizardly wisdom of Gandalf happily coexisting with simplistic naïveté of Bilbo Baggins, the hobbit.  Courage and camaraderie combine to thwart the seemingly insurmountable destructive powers of darkness and despair.  But it was its subtitle, “An Unexpected Journey”, which led me to conclude this story could be an allegory for life with Parkinson’s disease.

Seven years ago my life was pretty simple.  Staring into the future as far as I could see it all looked predictable, even comfortable.  Little did I know then that my life was about to be figuratively and literally shaken to its very core.  I was totally unprepared and left reeling from the January 19, 2006 diagnosis of Parkinson’s disease.  Life would never be the same.  The path ahead became unpredictable, leading through fields of false hope, black nights of fear and into narrow tracks in the unknown.  At times I found myself lost and alone in what seemed like a maze of caverns. 

But the truth is that, like Bilbo Baggins, I would never exchange the unexpected journey, with its challenges, friendships and adventure, for a predictable, comfortable, stay-at-home life.  No, despite the many setbacks, I would not give up the invaluable lessons I have learned along the way.  Like Gandalf said when questioned about allowing Bilbo Baggins to come along on such a dangerous journey to challenge such a formidable foe.  Some believe, he said, that “it is only great power that can hold evil in check, but that is not what I have found. I found it is the small everyday deeds of ordinary folk that keep the darkness at bay. Small acts of kindness and love. Why Bilbo Baggins? Perhaps because I am afraid, and he gives me courage.” 

Indeed, “it is the small everyday deeds of ordinary folk that keep the darkness at bay.  Small acts of kindness and love.”  The power of Parkinson’s disease in my life has been held in check by the small, everyday deeds of my friends and family.  Their reassuring words and simple acts of kindness and love give me courage to continue fighting. 

Whatever your views about Christmas (whether you are the “Happy Holiday” type or something else), there is something compelling about the story.  A baby, gifted to humanity by God yet born to ordinary peasant parents, he was destined to hold evil in check and keep the darkness at bay through sacrificial acts of kindness and love.  Why?  Perhaps because when we are afraid he gives us courage. 

Perhaps you’re a little like me as I anticipate with some trepidation the New Year, 2013.  If you are, maybe reciting words of Bilbo Baggins will give each of us courage as we embark upon the path ahead.  “I am going on an adventure” makes more sense to me than “Auld Lang Syne”.

                      

Bucket List - 2010

What are you looking forward to?

Although it is raining outside tonight, the weather in this brand-new year has not been excessively rainy. And the snow has managed to make only the briefest of appearances. Despite the gloom and gray of threatening skies, there must be a reason why this time of year causes me to think about my "bucket list". While it seems a strange and somewhat morbid fascination, or even addiction, I find a growing excitement when contemplating what might be struck from that list in the year ahead.

If you remember the Jack Nicholson and Morgan Freeman movie (The Bucket List), the 2 main characters recognized their mortality and realized that time was inevitably running out. What does one do when one faces that reality? Some would sigh and bemoan the fact that they cannot do everything they would like before they "kick the bucket". Others would simply ignore the reality of the clock winding down, effectively denying the inevitable, and continue to live life in the same fashion as it had been lived before. But, recognizing the value of the time we have to live, some of us make a "bucket list".

Whatever "kick the bucket" originally meant, and whatever one believes about the afterlife, there is certainly merit in those of us with Parkinson's disease asking the question, "what do I want to do now that I may not be able to do in the future?" In my experience, and I expect and that of others, there are a multitude of rather phenomenal benefits that occur from answering this question and then working on the resulting list.

The first benefit is that one's priorities are committed to writing.  In many cases the real important things in life are not written down. This is what triggers the imagination of the characters in the movie. The really important stuff of living is often subverted to the urgent or obligatory demands that confront us daily. Somehow it seems selfish to answer the question, "What is really important to me?"  But what could be more important than asking and answering that question?

Secondly, making and pursuing a bucket list gives one focus, a sense of priority, something to look forward to.  Rather than simply anticipating the inevitable deterioration of our physical and mental functioning, we can concentrate on living life to the fullest, as may to some extent be defined by our circumstances, but is often most limited by our choices. This exercise gives purpose beyond the daily regime we often fall into, rather than choose.

Thirdly, you can take it from me, and others who have pursued marking items off their own bucket lists, that the enjoyment and sense of achievement is thrilling. It leaves a legacy of stories to tell and encouragement for others to reach beyond their comfort zone into a land of hopes and dreams that can come true. I have found that my list has grown even as I have checked off items each year. And with it my desire to seize the day. Carpe diem! Some of my friends with Parkinson's have grasped this rallying cry, making it their solemn commitment in the fight against the corrosive effects of the disease. Every goal accomplished is a strike against the our opponent.

Fourthly, but not finally as there are too many results to discuss here, by listing the items our hearts desire we can begin to see how very much there is that we can do, instead of focusing on what we cannot do. It is in this way that we can defeat the enemy of hopelessness that so often hides in the shadows of this disease that seeks to take from us the life we had, and thought we would have.

Go around the world. Visit friends or relatives or the home you have not seen since you were a child. Write a book. Skydive or scuba dive. Go to Antarctica. Get a degree. Learn a new art, hobby, skill or language. Climb a mountain (not me!).  What are you really looking forward to this year?

Winston, War and Parkinson's

Exhausted from too many late nights at work, and having grabbed an insufficient four hours sleep before we dashed off to make the early morning flight from Vancouver to Miami, I slumped into window seat 13F, expecting to be asleep before we left the ground.  We had snagged the emergency exit aisle with the extra legroom and "reclining" seats, ensuring some ability to snooze.  As we were settling in I noticed that the movie to be played was "Into the Storm".  I had never heard of the 2009 Emmy-winning TV miniseries.  But something held my sagging eyelids open as I saw the rotund, cigar-chomping images of Winston Churchill.  I became totally engrossed as soon as I had my headphones plugged in and began hearing the fighting words of that savior of England. Those words inspired me as I began to see the analogy of Parkinson's as a war to be waged against an ever-fiercer force.

Churchill was a grand, if somewhat pompous, figure who strode confidently into the right place at the right time.  But at the time, few who knew the man considered him much more than a populist orator, an opportunist from a privileged background who succeeded to the office of British Prime Minister in the wake of Neville Chamberlain's retreat. Yet, despite his significant human failings (he smoked, drank and ate too much), he evidenced such courage, or brash arrogance, that he convinced or cajoled his nation and its leaders to not surrender to Hitler's Nazi bullies, but fight on despite formidable, even insurmountable, odds.  His determination and single-mindedness were legendary and critical to ultimate victory.  But, curiously, he was not a man for easy times, as his 1945 electoral defeat, after winning the war, convincingly evidenced.  He was born to fight.  The war made Churchill, as much as he made war.  It called out his greatness, his best.

I am inspired by Churchill's commitment to fight the enemy, regardless of his self-doubt and how futile war must have seemed.  I concluded at the end of that movie that he would be an inner voice for me, barking out encouragement or demanding improvement in the battle against PD.  Consider what he said and apply these statements to your enemy:

"Never give in - never, never, never, never...never give in... Never yield to force; never yield to the apparently overwhelming might of the enemy."

"Success is not final, failure is not fatal: it is the courage to continue that counts."

"Courage is the first of human qualities because it is the quality which guarantees all others."

"Sure I am of this, that you have only to endure to conquer."

"It is a mistake to look too far ahead. Only one link of the chain of destiny can be handled at a time."

"We shall draw from the heart of suffering itself the means of inspiration and survival."

Now ours is not a 5-year war with Parkinson's disease. Nor do we live in an age when fighting is portrayed positively.  We, of our generation, have grown up believing that all problems of conflict can be solved without sacrifice or saviors, hurt or harm. Such thinking in 1940 almost snuffed out the candle of democracy. But whatever our political persuasions, when it comes to PD we cannot negotiate.  Appeasement is not a strategic option.  We must battle its ravages until it is defeated. No wonder we feel fatigued from time to time, for it is a fierce fight.

We can be inspired by others who go to war against this daunting foe.  Like Michael J. Fox, fellow Canadian and crusader for a cure and the cash to pursue it, or Muhammad Ali, who, once as dauntless and ego-expressive as Churchill, does not hide in shame, or the hundreds who seek a better world for themselves and those who wake each day to face the enemy.  But even Churchill did not stand alone.  He has his Clementine, who soldiered on with equal bravery.  So too are there those today who prop up those trembling and stiffened hands, such as Fox's Tracy Pollan, and Ali's Yolanda.  I am reminded of my own bride of 35 years and the Churchill quote that certainly resonates for me.  Winston said, "My most brilliant achievement was my ability to be able to persuade my wife to marry me."

In times of war we need heroes.  Parkinson's is no exception.  We need inspiration and encouragement.  Maybe you know such a person who will help you to never give in.  Maybe you can be a soldier rather than a caualty.  It will take relentless, steely-eyed commitment.  But as Churchill said. "In war: resolution".

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.

Round Multicolored Bruises

Neither of us were Jewish, but somehow we found ourselves at 6 a.m. once or twice a week at the Vancouver Jewish Community Centre racquetball courts. How that was arranged so that it cost us nothing, or whether it was, I don’t remember. But the two of us, young, married prelaw university students, were there swinging and sweating profusely as we bashed that ball against the walls with a mutual determination to prevail. On occasion it was our respective backsides that took the full brunt of the black ball, but that pain was temporary. Little did we know that our respective futures would present much more enduring and serious competition and consequence.

Hugh Stansfield would have been 57 today, had he not died on May 7, 2009 after using everything he had to fight a senseless and relentless opponent, multiple myeloma, a type of blood cancer. He did not lose that competition, nor did he give up. He would have preferred to stay in the game, but it was just time to move off the court, leaving a legacy of life lived intentionally and intensely. He was a champion in every respect. Many people miss him. I miss him, especially today.

The impact he left on me was much more significant than a round multicolored bruise on the back. It was not as a fellow law student, or working in the same firm or even when he was the Chief Judge of the Provincial Court of British Columbia that he was so influential in my life. It was not even a courageous and outrageous 4 week motorcycle trip across Canada and back with him that affected me the most.  It was when he faced death that he taught me how to compete with a seemingly unbeatable adversary.

Over the last years of his too short life we shared our “weaknesses” in a way lawyers rarely do. I would spend precious time with him every week or so as he sat and drained a blood bag or two at the Hospital, which he did every 2 or 3 days.  We became teammates engaging different enemies that insisted upon inflicting maximum harm in an attempt to beat us. Cancer became his death sentence. Parkinson’s my life sentence. But I learned that neither judgment could crush our spirits or keep us in a dark room of despair.

He showed grace under intense life-threatening pressure, approaching his foe fearlessly and with his sense of humour in tact.  His commitment to "finish well" produced an awe-inspiring model of how to live.

We who knew Hugh can do him no greater tribute than playing on when the welts and scars from the game would have us  give up.  So play on we will.

Fear in the Fruit Room

Down the creaky wooden stairs and across the rough basement floor, past the roaring of the sawdust fed furnace, the fruit room waited in silence for me. It was in the far corner, where my approaching frame made only dim shadows on the door as I walked away from the single stairway light. It was called the fruit room because it stored our annual supply of home-canned peaches, apricots, pears and cherries that were sealed in Mason jars in the summer to stock the shelves for the barren months to come. It also contained all our homemade jams and a bin with potatoes that grew sprouts from their "eyes" during the winter months. It was an unheated and damp 8-foot by 8-foot room, rough 2x4 walls, with a vent leading to the outside. Spiders were the visible denizens of that coffin-like room. But most disturbing to me as a young boy was its deathly darkness. There was a bare light bulb hanging in the middle of the room with a pull-string switch but it could not be pulled without letting go of the spring-hinged door, thus plunging the room into total, if momentary, darkness. In that moment I would be alone in the dank and earthy inkiness. What was there that I could not see? “Some thing or person” my hyperactive imagination shouted inside my head. Then the goose pimples and shivers took over, crawling over me as I approached the room, a precursor of things to come. I regularly prayed when I was assigned by my Dad to make the trip downstairs for a jar of something. But it was the exit that had me most concerned. I would grab the string when leaving and lean towards the door handle, just out of reach. Then, springing through the opening, I would flee the unknown terror to reach the stairs and its welcoming light, the pull-string left snapping and swinging as if to escape the place too. I was afraid of the dark, or more precisely what might be lurking there ready to do me harm.

What am I afraid of now? Truthfully answering this question and admitting that I have fears is one thing.

PD has an insidious strategy of occupying the fruit room of my life. It is a dark and inscrutable guessing place that I do not wish to visit. What is in there? My initial response is, "Nothing good”. Only decreasing mobility, increasing shaking, painful intermittent cramping, and a litany of other strange marauders threatening to creep into my body under cover of darkness.

It is the PD "fruit room" that presents what I expect, based on my experience to date, is the worst part of the disease. Not knowing what is next or how fast my symptoms may eat away at my definition of normal.

How do we deal with our fears; our fruit rooms?

First, as I learned (rather slowly) when I was a boy, I need to find courage. Recently, my oldest son, Jordan, who saw active duty as a US Navy medic serving with the Marines, shared how fear was necessary for courage. A soldier without fear is either totally naive (and unprepared) or out of touch with reality (and dangerous). To be any help in any battle one must fight first their fear, then the enemy. And it is an ongoing battle of facing one's fears.

Second, it may be necessary at times to take someone else along. Two people entering the fruit room usually vastly reduce any paralyzing effect of making the journey there. Sharing fear requires that we first identify it clearly and then admit its powerful hold, its semi-permanent presence in your thoughts.

Lastly, we can shed new light on the darkness and its occupant, THE UNKNOWN. Educating ourselves about our feared disease may not be an encouraging task, and it may illuminate the scariness that really did reside in that windowless room. But we can deal with what we see, or at least acknowledge it.

And let us not forget that there are discoveries and sweet rewards in the fruit room. There are treasures we can share with others as we explore and expose the secrets of that scary place. And we will be the better for facing our fears.