Sunday, October 3, 2010

Parkinson's Disease - A Bridge over the River Clyde

As the taxi driver maneuvered his way across the Arc (or the Squinty Bridge as it is called locally) over the River Clyde, entering the downtown area of Glasgow with Scotland Exhibition & Convention Centre in sight, I felt fearful and alone. I could not clearly remember why I had decided to attend the World Parkinson's Congress, and now wondered about the wisdom of doing so. I had no way of knowing that I was going to be changed over the next few days. Permanently.

It was Wednesday afternoon. I was exhausted, having traveled overnight from San Francisco to Vancouver to London Heathrow to Glasgow. That would not have been so tiring had I not just returned from Lithuania to Vancouver last Friday to participate in our law firm’s annual retreat from last Saturday to Tuesday aboard a cruise ship from Vancouver to San Francisco. To Europe and back twice in 2 weeks, with one night at home, seemed a little silly in retrospect. When asked why I was going to Glasgow, I would give the reason that I wanted to see people I had "met" over the Internet; people with Parkinson's. In some respects it was a like an Internet blind date. It suddenly seemed like a bad idea. How was I supposed to make this work, say, “Hi. I am the guy from Canada that writes a blog on PD. Remember me?”

But it was not very long after I entered the Congress venue that I recognized some of these people in flesh and blood (rather than computer generated .jpg images). In the few days that followed these men and women evolved from single dimensional flat screen cutouts to brothers and sisters in a family fighting a battle together. We came from different parts of the world, sometimes struggled with communication, but nonetheless understood each other in ways that words could not express. Some, like advance reconnaissance troops, were far ahead on the path that we walk in common. They struggled with the Parkinson's enemy in ways that caused us fear and admiration. You see Parkinson's disease attacks each of us in our family in a different way, at a different pace, with different consequences. Some it causes to shake and shudder, squirm and writhe, flailing about as if attacked by a swarm of bees or possessed by an insatiable itch. Others stiffen, statue-like and can barely move, threatening to topple over as if some sadistic prankster had nailed her shoes to the floor. Some can confidently run marathons while others carry canes and shuffle insecurely from place to place. Some portray an engaging smile while others stare blankly, unable to evidence any of the emotions imprisoned behind their PD mask. Most speak softly, even when speaking about issues of powerful importance. This one disease provides a grab bag of symptomatic surprises, a multiplicity of manifestations. It defies and confuses effective general definition, just as it has evaded definitive causation and cure.

Many of the 3000 conferees came to this Congress to hear of hope. Hope from the breakthroughs in science. Hope in the testing and treatment of symptoms. Hope for a cure. Hope from doctors and scientists and researchers. Hope from experiments and studies and learned papers. Hope that soon those of us wearying of the daily battle with Parkinson's disease would hear of a winnable war.

However, for me, I found hope in the eyes of those friends and “family” members sharing in the struggle, the day-to-day demands and frustrations, the uncertainty and unfulfilled dreams and expectations. They are my heroes of hope, my fellow warriors. Soldiers in the war against the tyranny of Parkinson's, fighting urgently to free those held captive behind enemy lines. These are the champions who give me strength to carry on.
So as the Congress ended with farewell tears and hugs and kisses, there was an open pledge to be there for one another, to fight on as bravely as possible. For one day, as difficult as this all is, we will look back to this time as one of great closeness, joined as we are in the common call for courage. And perhaps soon the Arc will become a circle; a cure, complete and permanent. A circle of friends with hopes fulfilled. Veterans of battles past who raise a glass to victory won.


  1. Bob, your writing is truly inspired and inspiring! May the time of the circle come soon and may the circle of friends always stay in touch.

  2. Bob...Thanks for the well written report of the world congress and your own personal responses. I want to pass this on to my brother who has Parkinson's and had to retire this term from his seminary teaching position because of it. Keep up the fight and the great give us a window into a world that those we love live in and we try to understand.

  3. I love this post - I do wish I had made the trip, the conference sounded wonderful. There is nothing like being in a roomful of fellow citizens who are looking at the world through the same lenses.