Sunday, May 22, 2016

Suddenly Vulnerable

Perfectly timed. It was late Saturday evening when we arrived home after a restful vacation. I was a little anxious, having missed taking my 8 PM Sinemet tablet (Parkinson’s medication). Turning on the tap to get a glass of water, there was a sputtering sound and then… nothing. Not even a burp or a bubble. Nothing. If the water supply system was like a battery, ours was dead.  I checked everything (which only took me a few minutes given that I had no clue what “everything” was). We had no water. I felt a sudden sense of vulnerability as I began running down a mental list of things you cannot do without water… make coffee, wash clothes, brush your teeth, take your pills, flush toilets and, on the top of my mind just then, shower.
Image result for images of a dripping

I called the “water people” who had installed the pump in our well that sucked the sparkling clean and cold liquid up from the aquifer some 179 feet below the surface.  As I listened to the voicemail message, I remembered that this was Saturday night, a conclusion that was quickly made more complicated by the fact that it was a long weekend (Monday was Queen Victoria Day in Canada and, despite the fact that she died in 1901 at the ripe old age of 81, Canadians hardly seem embarrassed when they use her birthday as an excuse for a holiday). Any hopes of a quick fix in response to my call… I was hoping for something like “Flick that red switch twice with one eye closed”… were quickly dashed by the “water people” out of office recording. “Please be advised that weekend or holiday callouts will be charged at a four-hour minimum rate of $105 per hour per person, with the hourly rate increasing to time and a half after the first four hours”. I left a message for the “water people” to give me a call Sunday morning (emphasizing that I did not want anyone being “called out” without further discussion).
Image result for images of a plumber

Sure enough, Sunday morning Dave, one of the “water people”, called my cellular. When he heard the symptoms I described he quickly diagnosed the problem as a “pump failure”. Apparently, the 22 years that had transpired since the original installation of the pump was substantially longer than the pump’s life expectancy.  Who knew? Dave went on to warn me that a crane truck would be required to pull the pump up the steel straw-like well casing so that it could be replaced. This was no minor house call and, given the long weekend, it was priced accordingly. I felt suddenly helpless, having taken for granted the ready access to water at the turn of a tap.

Now, drawing water from the swimming pool solved the problem of flushing toilets. A bucket full dumped into the toilet was all that was needed. But having a shower (hot, or at least tepid) required more than innovation. It necessitated a friend, and not just any friend. This had to be someone who might be home on the long weekend just waiting for a call from a desperate, dirty and, likely, odoriferous friend in desperate need of a shower. It occurred to me that the deprivation of one modern convenience I often take for granted left me dependent on others.
.Image result for images of flushing toilet bucket
The metaphor dawned on me as I swallowed my Parkinson’s medicine, helped along by a warm soft drink from the pantry. My neurological full functioning, like the running water in my home, will no longer taken for granted. In fact, the analogy of my crippled water system, left me wondering; perhaps someday a person with Parkinson’s will be able to have their neurological “pump” replaced so that it will again function correctly. In the meantime, let’s not take anything for granted. And when we run out of independent options, we need to remember that we have each other to help us through.
.Image result for images of brain plumbing

Monday, May 16, 2016

Image result for images for lessons learned in lifeThe World Parkinson Congress is held every three years. This year, 2016, it will be held in Portland, Oregon, USA. I will be there, just as I was for the 2010 (Glasgow) and 2013 (Montréal) events. It is an extraordinary opportunity I would not want to miss. It offers invaluable understanding, innovative ideas, incredible camaraderie and inestimably important; hope. While it is an intense three days, there’s nothing quite like it for healthcare practitioners, scientists, resource people and people with Parkinson’s. It is a time when the disease actually draws people together from all over the world for a very worthwhile purpose: to better the lot of those who are challenged by this debilitating, degenerative and, supposedly, incurable neurological disorder.

This year also represents the 10th anniversary of my Parkinson’s diagnosis. I am now a decade into this strange “season” of living. Time for a look back at the most meaningful lessons I have learned (limiting the number to the top five).

Perhaps the most profound thing I have learned over the past 10 years has been to recognize the truth found in the words of the song, “Turn, Turn, Turn”, written (actually borrowed from the Book of Ecclesiastes in the Old Testament) by Pete Seeger, this song was first performed when I was 10 years old, and was subsequently performed by dozens of major artists and groups. You may remember the opening line to this timeless and classic hit: “To everything there is a season, and a time to every purpose under the heaven”. It reminds me that the one constancy of life is change. It is unpredictable. Life has its seasons. And, of course, the onset and progression of PD is neither predictable nor controllable. Change is inevitable as the seasons, and we must adapt with each change.
That leads to my second revelation. While one cannot control whether one gets PD, each of us who do have control over how we respond to that diagnosis. Whatever our circumstances, and I don’t pretend that they are exactly the same for any of us, we each have to choose what we do in response to the diagnosis received. The array of choices can be overwhelming. But even to refuse or fail to make the decision is a choice. Choose we must.

The third conclusion I have reached in my decade with this rather insistent partner called Parkinson’s is that the most important thing I choose is my attitude. PD is more than the sum total of its symptoms and causes. It is a battle for control over one’s attitude. We can remain positive, solution-oriented, determined and purpose-driven. Or you can choose negativity, self-interest, withdrawal and purposelessness. This choice is left up to you and me, to be exercised every day, perhaps multiple times each day. It is likely our most important legacy to those who watch our journey.
Image result for images attitude is everything
The fourth of my top five lessons learned is something I tried to teach my children. “Falling is part of learning”, I often assured them whether they were trying to learn to ski, ride a bicycle or achieve some success or goal. It is not how many times we fall, or fail, it is how many times we get back up and try again. PD is challenging, there can be no doubt. It may literally mean falling, shaking, or not moving at all. But whatever it is, it will require discipline and perseverance in order to deny PD the victory.

The fifth, and final (at least for this blog entry), lesson that I have learned in the past 10 years is the danger of facing this ever-demanding opponent alone. I understand the tendency to withdraw from others when you feel conspicuous, clumsy, embarrassed and intimidated due to tremors or other uncontrollable physical symptoms, but accepting oneself, PD symptoms at all, is a critical need for all of us. This means we have to be ready to talk about it, even if we are not inclined to discuss the dreaded disease. Most people will not bring it up unless we create the environment or opportunity to do so. The more people understand, the better it is for all of us. The idea of “independence” for any of us, whether we have PD are not, is often illusory. We are all part of a community, and the best way to live in community is to recognize our interdependence, our need for each of us to understand that we are better together
.Image result for images choosing not to be alone
These five lessons are not about surviving PD, but rather thriving despite, or maybe because, of the disease. Let’s chat further at WPC 2016, September 20-23, 2016. There are lots of lessons to be learned there. You won’t regret making it a priority.

Monday, December 14, 2015

Endure or Enjoy?



It was Sunday evening and I pulled up his number from my Contacts and called.  We had not talked for months, or even years.  But the email I had received from his wife hung in my thoughts like a bad dream that I had to dispel.  Apparently, my friend Art had been losing weight, was excessively tired and his skin had taken on a yellow tint.  The doctor immediately sent him for blood tests and a CT scan.  The verdict; Art’s pancreas and liver were filled with tumours.  The unspoken but expected diagnosis; cancer, likely the aggressive kind.

Over the phone Art sounded like he always did.  I have known him since we were boys, a few years apart in age, growing up in the small unincorporated district of Coldstream, British Columbia.  Our lives had intersected numerous times since we had both left the rural life for a more fast-paced existence in the Vancouver area.  We had lived together in a large residence for several years in the mid-seventies.  He married a fellow alumnus of Trinity Western College (as it was then).  We had shared a number of key life experiences like each of us going through the pain of a private adoption that fell through and having to return those babies after they had become a part of our respective families. In every circumstance of life Art had remained consistently positive, with an infectious laugh, a playful nature and a strong faith in God.  These are all being tested.

As we talked we found that, although his potential cancer diagnosis and my now 10 year old Parkinson’s disease diagnosis are incredibly different, we shared much in common.  Although we had been healthy and active before, we now both had to face the frustrations of being confronted with our mortality.  Medications, doctor visits, treatment options, symptoms and side effects were now a part of living with our respective physical ailments.  Uncertainty and its consumption of the future was a reality we both experienced daily.
But as I listened, I realized that we both spoke convincingly (perhaps to reassure ourselves, or those within earshot) of living out our lives as positively and purposefully as we could.  We found that the Christian faith we shared gave us strength and assurance of meaning amid the sense of impending loss.  We each had a hope not so much for a medical miracle (although that would be just fine) but for the ability to make the right choices in what we say to those we encounter such that our remaining days or years will communicate faith and love.

Art and I found ourselves agreeing on the phone that evening, making a sort of silent pact.  We choose to enjoy the days ahead, not just endure them.  We will not let the difficulties of the future crowd out the wonderful memories of the past.  We will seek significance through and confidence in the challenges of the present rather than succumb to fear of what may come.  Each day will be seen as a gift to be opened with a sense of wonder and expectation.  We will live life as a series of opportunities for inspiration rather than just constant threats of expiration.
As I hung up the phone I felt warmed and encouraged by our time spent talking together.  I realized again that it is in the crucible of life’s most threatening times that we can experience a peace that cannot be explained, the depth of being fully human and the richness of relationship.  I am reminded that every day I need to ask myself, “Regardless of the circumstances, will you chose to enjoy life or just endure it?”


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