Wednesday, October 1, 2014

C2C For a Cure

C2C for the Cure

Can I still do it? It has been a long time. Why has it taken so long? Simply put, my plate has been more than full recently. I have no other excuses. Perhaps nothing but an audacious challenge could have roused me from my backslidden blogger status. Even now there is a certain apprehensiveness that goes along with having not written a blog post for over a year. My Parkinson’s has progressed as one would expect such that everything is a little more difficult than it used to be. In more ways than one it is now time to determine whether I can rise again to the challenge.

I’m currently in California preparing for the start of the 50 CC Ride. For the uninitiated, that is shorthand for coast-to-coast on a motorcycle in 50 hours. Very few riders accomplish this endurance feat. But most who try start out in San Diego, California, and end up in Jacksonville, Florida. That is approximately 2400 miles (3860 km). If you drove it without stopping you would have to average 50 miles an hour (80 km/h) to do it in 48 hours. Given that motorcycles require fuel, and human beings require pit stops for food, liquids and other natural bodily functions, not to mention a short nap or two, the average speed will have to be more than 50 mph.

This all started as a bit of a dare, or at least that is how I interpreted it. My good friend, Jim Goertz, told me about how he had completed the 50 CC Ride recently. He rides a Harley-Davidson. If motorcycles were assessed on the basis of loudness, Jim’s bike would win over my “Big Blue” Honda Gold Wing hands down. But when it comes to driving long distances comfortably, nothing beats the Honda Gold Wing. The seed was planted and grew quickly into a full-fledged plan, which was readily adopted by another Honda rider, Andrew Westlund.

On October 7, early in the morning, Andrew and I will be departing San Diego en route to Jacksonville on a journey which we intend to finish within 50 hours at the most.

When I explain to people what I am doing, most of them are shocked that someone who was diagnosed almost 9 years ago with Parkinson’s disease would attempt such a crazy idea. But in some ways, that is exactly the reason I am choosing to do the ride. To prove that I still can do it, yes. But also to prove that anyone with Parkinson’s disease can do things that may seem outrageous at first, but are just challenges that test our  willingness to fight back against this disease, or any other ailment that can have the effect of sidelining us.

So there are 2 things that can be accomplished  by this ride in terms of Parkinson’s disease. The first is to raise awareness that life need not stop after leaving the neurologist’s office with a handful of prescriptions for pills you will have to take for the rest of your life. In fact, life has been a more exciting adventure since my diagnosis than it was before PD (and it wasn’t too boring before either). The second purpose is to raise the money to help find a cure. On that front I have decided to partner with Michael J Fox Foundation.
There you have it.  C2C (Pacific to the Atlantic) in less than 50 hours. To keep updated on my 50 CC adventure, or to make a donation ("buy" 1 mile for $10, or more if you can afford it) to the Michael J. Fox Foundation for Parkinson’s Research, please visit Kuhn’s Team Fox fundraising page, or the C2C for the Cure Facebook page. You can also follow my C2C for the Cure ride via Instagram at c2cforthecure and Twitter @TWU Bob.

Wednesday, July 3, 2013

In the Interim

If you read my most recent blog post, you will note that recently I was appointed the President of Trinity Western University.  Among other things, this is meant that I have little time to give to Positively Parkinson's.

As somewhat of a consolation for those of you who may wish to follow my life as the interim President of a University  (some might call me "Parky Prez"), please find my most recent blog at:

http://twupresident.blogspot.ca/

Why not follow along.  It's bound to have some interesting twists and turns.  And when the "interim" is over, I intend to return to writing Positively Parkinson's.

Bob

Saturday, May 25, 2013

Challenge

 The call display had my heart beating faster instantly.  The voice on the other end of the phone announced the beginning of an adventure the likes of which I had never known.  One could argue, and some did (and still do), that to accept the assignment was foolhardy.  Were there not enough challenges in my life; grappling with the degenerative effects of Parkinson’s disease, maintaining a thriving practice of law as part of a dynamic team of professionals, and contributing “spare time” to charitable causes (including serving as an ambassador for World Parkinson Congress 2013 in Montréal in October)?  Certainly, I had not been looking to take on any additional responsibilities.  In fact, the opposite might have been true.  But I knew this was a call I needed to answer.  Despite any superficial lack of logic, the clarity of the “call” struck an unmistakably responsive chord in me.  Not only was the risk worth taking, any resulting fear was worth fighting.  I was compelled to “answer the call” in the affirmative.  I felt a deep sense of peace in agreeing to the proposition made over the phone that day.
My time at Trinity Western University has, for more than 40 years, represented a major turning point, a metamorphosis, in my life.  It provided an incomparable environment for me to grow and flourish.  In the space of 2 years (that was all that was offered at the time, being a junior college), I learned invaluable and lifelong lessons in virtually every area of my life.  Spiritually, intellectually, athletically, relationally, and in matters of leadership, through its professors, staff and my fellow students, Trinity gave me transformative encouragement which endures to this day.  When its Chairman of the Board of Governors asked me to serve as the part-time, interim President of TWU during the search process for a long-term replacement, I was surprised, not being an academic or experienced in institutional leadership.  But, despite that it seemed, strangely, like a challenge that I had been prepared for.  Despite some questions and concerns, I felt confident that with the right support from people I could serve my alma mater, giving back out of my deep sense of gratitude.

Perhaps the biggest questions (asked by me and by others) in responding to the call were, “Will Parkinson’s impede performance?  Will the role exacerbate the Parkinson’s?”.  The response to both was a lawyer’s favorite answer to almost any question: “Maybe, it depends”.  Can anyone truly predict how he or she will respond to the uncertainties of any challenge?  So, starting July 1, 2013, with the support of my wife and the dedicated students, staff, faculty, administration and other stakeholders, I will take up the challenge with all its uncertainty. 
Years ago, shortly after being diagnosed with Parkinson’s, I made a commitment to myself regarding how I would respond to the fact that I had a degenerative, debilitating and currently incurable neurological disease.  I vowed to confront the challenges that it represented head-on, refusing to concede its dominion over me as a person while not denying its seemingly unstoppable march into new territories of my body.  Perhaps, most importantly, I made a pledge to myself that I would not easily surrender when faced with opportunities to serve simply because of the disease.  In fact, PD has provided an abundance of opportunities, and a depth and quality of life that I never imagined would be available.

I am often left asking myself this question: “Will you limit your challenges, or challenge your limits?” 
[My desire to continue “Positively Parkinson’s” on a weekly basis remains undimmed.  However, my learning curve with respect to my anticipated duties at Trinity has been steep.  Further, pressing my full-time law practice into halftime for up to one year is requiring additional effort.  All that to say the frequency of posts on this blog may be somewhat less predictable for the next number of months.]

Monday, April 22, 2013

The Truth?

“To tell you the truth…”. To be honest…. Without a word of a lie…. The truth, the whole truth, and nothing but the truth…. Figures of speech, perhaps, but why do we use them? Who are we trying to convince? Why don't we just tell the truth?  What is the truth?

Situation #1: I had just escorted the new client into the boardroom. We sat across from each other exchanging pleasantries until he leaned towards me, placed his elbows on the broad oak table and clasped his hands together as he told me his story. It seemed as if he could easily slip to his knees on the floor in an attitude of prayer, as he might have knelt beside his bed when he was a child. He seemed earnest, too earnest. He was trying too hard to make me believe what he was saying. Insist that we might, he was not believable. I found myself backing away from representing him.
Situation #2: It was a typical stand-up cocktail party, the kind where you move aimlessly around the room making small talk with people you may have never met before, and may never meet again. Everyone seemed at least slightly uncomfortable, most of them thinking about something other than the superficial conversations they are apparently engaged in. But the couple I was speaking to responded with more than the easy answers to my relatively innocent inquiries. It seems as if there was a reason for them to be disclosing, to be honest, even transparent. Within minutes there were tears shed, great pain acknowledged and difficult things shared. The truth had drawn virtual strangers together, if only briefly.

Situation #3: Our paths had crossed at several junctions, yet we had never had an opportunity to exchange more than polite pleasantries. But the couple I was seated next to at the wedding reception seemed to have a story to tell, a confession to make. In short order the secret was out. Despite the pained expression on their faces, there was also relief. The truth was known, and it was freeing. Of course, the admissions of past failure were not made without risk. There is always risk in the telling of the truth or a lie. So what is the difference? There is no potential for freedom in telling a lie. There is no potential for depth in relationship when wearing a disguise. One can only be loved to the extent one is known.
And so, too, with Parkinson’s. It seems that, despite the long history of this disease, there are many who know nothing about it. Of course, we who have it are anxious to disguise its symptoms.  Self-conscious, we sit on our shaking hands or stuff them in our pockets to avoid the questioning glances. We avoid social situations that demand agility and fine motor skills to navigate crowded room with a drink in one hand and a plate of canapés in the other. We hide the ever-increasing loss of control, as if admitting to our ailments were a sign of weakness, the painful recognition of our diminished value in a society that praises proficiency and power.

April is Parkinson’s Awareness Month, but I find myself wondering what that is supposed to mean. Sure, there are fundraising events and television campaigns. And, perhaps, the general public becomes marginally more aware of something called “Parkinson’s disease”. But in a culture where life is lived at the speed of a Google search, and retention of information is limited to the overloaded capacity of human (and digital) memory, “awareness” often becomes a vague and overstated achievement. Ask any person at the end of April how much more he or she now knows about Parkinson’s disease. Not much, I expect. Why?


I have a new idea for “Parkinson’s Awareness Month”. Let those of us who have this chronic, degenerative and incurable disease just tell the truth to a few who might be interested in listening. Certainly, there are risks, but isn’t it better that the truth be told, the whole truth and nothing but the truth? How can we advocate awareness when we are afraid to share the truth?

http://www.youtube.com/watch?v=IH-1-00cQok

Friday, April 12, 2013

At Peace with the Unsolved Problem?


The newspaper lay open on the restaurant counter. Whoever had last been seated there had left either in a hurry or in frustration, as an incomplete crossword puzzle advertised the departed patron’s defeat.  That abandoned puzzle drew me, challenged me, taunted and tempted me. “Can you finish me off? Try it! I dare you."  My eyes darted from the tiny number in an empty square to its twin in the list clues. The instant I knew I had the answer, mentally filling in the empty spaces, I knew it had me. Like a net it engulfed me until I had solved every clue and filled in every blank, freeing myself from its grip. I closed the newspaper and ordered supper.

I enjoy solving problems, or at least trying to do so. I find myself attacking them, studying them, turning them over and over in my mind until I (hopefully) find that unexplored niche, that secret portal that lets me in. I am blessed by a calling that allows me to exercise this passion for problem-solving. I resonate with our mission statement:
“We serve as trusted problem solvers”.

But every problem is not so easily solved as a crossword or a legal dilemma. There are the big problems like terrorism and violence, oppression and ignorance, hunger and crime. There are the emotional problems like divorce and abuse, addiction and abandonment, hatred and hurt. And then there is the problem of diseases such as Parkinson’s, an unsolved mystery like a crossword puzzle the size of a city block cut into millions of pieces and thrown into a hurricane. In order to find the answer we must first find the right question, the clue.

When it comes to problem solving there seems to be 4 kinds of people. There are those who choose to ignore the problems altogether, denying their existence. “Ignorance is bliss” they say, not knowing that the 17th century poet Thomas Gray had tongue-in-cheek when he said:

"Where ignorance is bliss, 
'Tis folly to be wise."
Second, there are those who solve the easy problems but stop there in fear lest they be defeated on the more difficult ones. Like those who master, and remain satisfied with, the simple crosswords but never move on to take on the more challenging.
And third, the “A” type personalities who climb progressive steeper slopes, becoming stronger as they go; winning gold and glory for getting to the greatest heights. We honor them and give these heroes praise for their success.
But there’s an oft-forgotten few who toil away against all odds, the unadorned but unrelenting who maintain the faintest flame of faith. They are the humble few who will not bow to failure, but insist upon believing that answers can be found for the incurable. With passion-driven tenacity they battle on, refusing to make peace with the unsolved problem.

Which one are you?  Which one do you want to be?

Saturday, April 6, 2013

The Progeny of Pain and Parkinson's Disease

It was 15 years ago.  Good Friday.  Black Friday.  It became the epicenter of a personal earthquake the aftershocks of which I still feel today.  There was no physical pain, but a decision I made that day led to lifelong professional consequences, strained relationships, significant economic setbacks and a profound sense of loneliness.

At the time, it had no connection with Parkinson’s disease, although, in retrospect, it may have been early evidence of its onset.  Despite the lack of any association with PD then, that dark day was preparing me for another difficult one 7 years later; my diagnosis day. 
Good Friday, 1998.  As one would expect, none of the firm’s lawyers were in the office.  Except me.  I was sitting at my computer, reading and rereading the short note I had just typed.  I hesitated, staring out the window.  It was a beautiful day outside, but inside my head I saw nothing but ominous clouds, a storm I could not survive seemed to loom immediately ahead.  I felt that the only responsible step was to do something to avert its impact.  I hit “Send”.  The almost inaudible click of that key started a chain reaction I could not have anticipated, at least not in the state that I was in at the time.

There was anger and accusations of disloyalty and betrayal.  In the minds of some I had broken a trust that could not be repaired.  There was no way forward.  No explanation was satisfactory.  My words sounded hollow as they seemed to rebound off those faces that no longer smiled at me.  The harm done was irrevocable.  My partnership in the law firm ended, unhappily.

Unintentionally I had caused fear, sadness and anger, not just for myself but others I cared about.  I was guilty and the painful consequences followed.  But in the 15 years since that fateful Good Friday, I have learned something about that pain; it was necessary. 
On April 3, 2013, “Kuhn LLP – Legal Counsel” had an open house and invited its clients and others to celebrate the new facilities we had moved into.  But we were also celebrating our 15th anniversary.  As the day arrived, I began to see our new offices and the anniversary as poignant testimonials of the value, even the necessity, of pain as an instigator, a change agent.  You see, were it not for the dark days following that Good Friday of 1998 I would never have left the law firm I was with.   I would never have ventured out on my own in a humble, 150 ft.² office using borrowed furniture.  I would never have experienced the growth of that solo practice to a midsize firm of extraordinary professionals, already fully occupying more than 5000 ft.² of first-class office space.  There are a lot of people to thank, but the genesis of it all was pain.

Pain is still producing progeny in my life.  But now the source of pain is Parkinson’s disease.  Of course, PD brings with it physical pain, but like the pain of 15 years ago, it is complex.  Both involved an indescribable sense of loss, unavoidable and sweeping change, and the undeniable need to redefine myself to some degree.  However, just as I am incredibly thankful for that painful catalyst that occurred 15 years, I am finding myself increasingly aware of the growth and perspective gained from having Parkinson’s.  I may not yet be in a place to celebrate my PD diagnosis.  But then it hasn’t been 15 years since diagnosis day (January 19, 2006).  Who knows, maybe I will have a party in 2021!

Saturday, March 23, 2013

Order in Court – Parkinson's Disease on Trial


“Order in Court!”, the court clerk announced as the judge entered the courtroom.  Everyone rose from their seats, standing respectfully while the robed Madam Justice Daniels took her seat in the large oak and red leather chair behind the dais called the “bench”.  Legal counsel nodded at her deferentially, a poor excuse for the waist deep bow of yesteryear.  The somewhat respectful motion was returned by Judge Daniels.  Lawyers took their place at the long counsel table facing her ladyship.  The oak table was divided in the middle by a small speaking podium which was to become the focal point of the next 3 days’ argument.  Taking their cues from counsel, the interested parties in the gallery took their seats on the padded pew-like benches.  These seats were behind a sturdy wooden handrail, the “bar” that historically was meant to separate the lawyers from the public just as the “bench” separated the judge from the lawyers.  No one spoke except the court clerk who announced the case to be heard, “In the matter of… My Lady”.  There was no smile on any face.  Everyone in the courtroom knew this was serious business.  The war of words was to begin.  In the end there would be a winner and a loser, a victor and a vanquished. 
I stood to introduce myself to Judge Daniels, as is the custom at the beginning of trials, despite the fact that I had known her for many years before she became a judge.  As I did, I knew that I was facing two battles.  In one, my opposition was my “learned friend”, as legal counsel are prone to politely (usually) refer to each other in a courtroom.  But the more imposing opponent was that which caused my hands and legs to shake uncontrollably: Parkinson’s disease.  Its presence was so obvious that it needed no introduction.  However, feeling less than the confident advocate I wanted to portray, I felt compelled to explain or excuse its influence over me, as if to fail to do so in this austere and controlled environment would be disrespectful.  As the explanatory words tumbled awkwardly out of my mouth I immediately regretted my decision.  As I listened to the language I used it somehow sounded to me more like a plea for sympathy than a factual clarification.  I felt it sounded weak; an excuse for anticipated lackluster performance.  
That’s the way it is with Parkinson’s disease.  I always seem to struggle with how to introduce this rather intrusive character who accompanies me everywhere.  At times, it seems safe to ignore his presence, pretend he doesn’t exist.  In some social circles it can become a silent pact of mutual denial.  “Don’t ask.  Don’t tell.”  Somehow, it reminds me of the Hans Christian Andersen’s fairytale, “The Emperor’s New Clothes”, a sad story about dishonesty, self-delusion and prideful hypocrisy.

At other times, I have been tempted to use the “PD Card”.  It is a membership card that is intended to make available special privileges reserved for the disabled, for whom such privileges are necessary as opposed optional.  It is like wearing a handicap parking sign around your neck just to ensure you get a spot closest to the door.  I expect that I may need that privilege card someday, but at present I can walk a few extra steps to the door and rarely need special treatment (other than a little patience when I am getting the necessary change out of my pocket or quickly trying to fill in a form).
 
And between the two alternatives lies the vast middle ground marked out by everything from understatement to complaining, from making excuses to refusing a helping hand.  Whether in a courtroom or on the street corner greeting a fellow lawyer or old friend, it is in this middle ground that I struggle to find the right words.  I suspect other people with Parkinson’s face a similar dilemma.  Trying to choose my words carefully and find a convenient place to introduce my companion, PD, into the discussion is often, to say the least, awkward.  How do I raise the subject, and at least satisfy the other party’s obvious curiosity, without the Parkinson’s proclamation banishing all other topics of discussion?  How do I avoid becoming the subject of someone’s pity while honestly communicating the reality that I have an incurable, chronic and degenerative disease?  This is my dilemma.  
The way I process this problem is to ask myself several questions.  First, is an explanation necessary or appropriate?  Not everyone I meet needs to know I have Parkinson’s.  But a short description may be helpful even to a store clerk whom I will never meet again.  Often, a simple admission, a label without more, is enough.  Most people are more self-conscious about asking about what’s wrong with me than I am about telling him or her.  But the benchmark question that I find most helpful to ask myself is, “What would I want to be told if I were in the other person’s shoes?”

After 3 days in court, my unrelenting tremors seemed less obtrusive.  Other than struggling a time or two with turning the pages of my written argument, the shaking had minimal effect on my performance.  And while Madam Justice Daniels probably didn’t realize it when she delivered her reasons for judgment late that Friday afternoon, I experienced a double win; a resounding victory over opposing counsel, as well as my mortal enemy, Parkinson’s disease.