Sunday, July 10, 2016

When I’m 64!

“Will you still need me, will you still feed me, when I’m 64?”

Anyone under the age of 50 probably won’t recognize the title of this blog. The Beatles (who most people have at least heard of) recorded the hit, “When I’m 64”, at the end of 1966, 50 years ago. It became one of the lead songs on the four time Grammy award-winning album, “Sergeant Pepper’s Lonely Hearts Club Band”. 32,000,000 copies were sold, more than any other Beatles record.
As of today, July 10, 2016, I can no longer sing this song in anticipation. I remember first hearing it when I was 14 years old, a mid-teen country boy consumed with dreams about the adventures and exciting opportunities that would fill my next 50 years. The age of 64 seemed like an eternity away. But here it is, my 64th birthday has arrived much faster than I thought it would.

The lyrics of the song are somewhat of an enigma, especially when you discover that Paul McCartney had written the lyrics at the ripe old age of 16. Sung from the perspective of a teenager wondering what it would be like at the age of 64, the song is a series of questions posed to his prospective lifelong partner. See the lyrics below. The song expresses personal insecurities and asks questions that remain relevant even after 50 years. Will we still celebrate life when it’s not quite as romantic as it once was? Will we consider the needs of each other? How will we spend our time together? Will we continue to live meaningful lives? Will we have enough money? Will we have family to enjoy? Will we be secure in the commitment we have made to each other?

When I get older
Losing my hair
Many years from now
Will you still be sending me a Valentine?
Birthday greetings, bottle of wine?

If I'd been out
Till quarter to three
Would you lock the door?
Will you still need me
Will you still feed me
When I'm sixty-four?

I could be handy
Mending a fuse
When your lights have gone
You can knit a sweater by the fireside
Sunday mornings go for a ride
Doing the garden
Digging the weeds
Who could ask for more?
Will you still need me
Will you still feed me
When I'm sixty-four?


Every summer we can rent a cottage
In the Isle of Wight if it's not too dear
We shall scrimp and save
Grandchildren on your knee
Vera, Chuck, and Dave


Give me your answer
Fill in a form
Mine for evermore
Will you still need me
Will you still feed me
When I'm sixty-four?


For my part, it has been an extraordinary 64 years. Far from shallow, boring or tedious. Renae and I, both 64, have had, and continue to have, phenomenal adventures and meaningful opportunities far beyond our teenage dreams. But alongside the fullness and blessings of the past 64 years there have also been times of great pain, loss and struggle. I’m sure that when the Beatles first performed this song they did not anticipate that two out of the four (John Lennon and George Harrison) would not make it to the age of 64. Paul McCartney would not have likely guessed that he would be married three times.


The final three lines of the song’s chorus continue to strike a chord of insecurity. Even at the age of 64, and perhaps even more so, I sometimes wonder whether I am needed. Given the reality of Parkinson’s, a degenerative, currently incurable, and quite likely debilitating disease, I may well need to rely on others to feed me. Yet, despite any insecurities, there is a great deal of living to do at the age of 64. Aging presents us with a remarkable opportunity. It gives us a chance to be thankful for so much, which attitude in turn helps us to be positive, from which follows a willingness and desire to care for others. At 64 we have some questions to answer. But they need not be the ones asked in this song. Rather, we can ask ourselves; how can we help others? How can we encourage and value members of our family, our friends, or simply those we encounter from day-to-day? And for those of you who can still sing the song with anticipation, you don’t need to wait until you are 64 to ask yourself these questions?

Saturday, July 9, 2016

The Battle of the Button

Standing and staring into the bathroom mirror in the early morning does not count as one of my favorite moments in the day.  First, even without my glasses, I am instantly aware again that the unshaven person with tousled gray hair that I see reflected has aged considerably since he was 18 (the age that I feel on the inside!).  Second, since I haven’t taken any of my pills the stiff movements and uncontrolled shaking remind me of the Parkinson’s disease prison that I occupy.  But thirdly, I quickly start thinking about the battles I will face in the day ahead.  Fighting bone-deep fatigue, trying to ignore the aching pain that develops in my shoulders and arms, and managing to eat with a fork despite its tendency to catapult its contents onto the table, floor and the person seated next to me; they are all challenges I will have to deal with because of PD.

But some days are worse than others.  Now that I am the president of a small university (Trinity Western University), I am often required to wear a suit and tie in order to appropriately play host to special guests of various cultures.  Of course, this necessitates that I wear a dress shirt, and my favorite dress shirts that I wear are the Nordstrom’s “boat” shirts.  Comfortable, crisp and durable, there’s just one problem, THE BUTTON.  Actually, there are five buttons with which I wrestle each time I put on a dress shirt.  There are the cuff and sleeve buttons, four in total.  However, usually after 6 to 8 attempts, I can squeeze the little plastic spheres into their too small stiff-cotton slots where they will stay until the shirt is laundered and returned to my closet to wait its turn to be worn. 

However, one button, strongly stitched on the edge of my collar next to my throat just under my beard-hidden double chin, remains to be conquered.  I pinch one half of the button with my right forefinger and thumb as if to squeeze it flatter.  At the same time, while trying to bridge the chasm that separates my collar band, I pull with my left thumb and forefinger to "stabilize" the buttonhole that awaits insertion by the approaching button.

Now all this sounds quite typical and easily accomplished, but not so with Parkinson’s.  For someone with PD, attempting to place the mini discs through the appropriate reinforced slits can be like trying to thread a needle while standing up in a storm-tossed dinghy.  Each desperate try results in deeper frustration, and increased shaking, often ending in exhaustion even before the day has started.

There is some things about the way I fight that battle with the button that are important.  For starters, the time-consuming process teaches me patience, demanding that I go slower than I would like.  Attempting to rush the task is certain to lead to failure.  Further, the simple war I wage with the button any given morning trains my spirit to be determined, refusing to give up too easily when it seems hopeless.  It may seem to the outsider that this is just being stubborn.  Be that as it may, I believe we need to be stubborn in our fight against PD.  But there is one more lesson I have learned from the button: the humility to know when I need help.  It is a balancing act: asking for assistance too readily on one side and exercising prideful insistence on the other.  It takes wisdom to know when to enlist your ally to win the battle of the button.


I have the battle of the button.  What is your battle? 

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 (MontrĂ©al) 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