Thanksgiving and Parkinson's Disease

The room was filled with an expectant hush as Tom Isaacs, co-founder of Cure Parkinson's Trust, struggled to the platform to speak at the morning plenary session of the World Parkinson's Congress. Despite the early hour, and my recent arrival in Glasgow, having endured two 14 hour trans-Atlantic flights in the prior 5 days, I was there to hear from someone I consider a champion for those of us battling Parkinson's disease. His movements were clearly dyskinetic, illuminating his words as if brilliant multi-coloured neon was flowing though them. Together the content and physical context of his presentation portrayed a powerful message. For here was a man who did not just speak about the disease, he lived it, unashamed and out loud.

"My glass is always half full," he quipped, "mostly because I spill the rest." The message: Despite the disease dogging his every step, this optimist's cup was full to overflowing. He spoke of the positive aspects of Parkinson's and, given the title of this blog, I resonated with his theme, made all the more poignant by contrast with his uncontrollable demonstration of the disease. He was constantly moving. It was not a tremour like I get in stressful circumstances, but full-blown dyskinesia; squirming, almost flailing, movements that would have kept many speakers from ever daring to climbing to the podium. But instead of distracting my attention from his words, the movements were like punctuation, bringing the message to life. It was real life in its unadorned state. Life with pain, discouragement, frustration and fear that the worst is yet to come. Life where one is constantly misunderstood, mislabeled and pitied.

On this day before Canadian Thanksgiving, I am reminded of his attitude. His speech's alliterated headings stuck with me as hooks upon which hung the fabric of optimism. Being. Belonging. Becoming.

Being is the definition of who we are. We who share the diagnosis are easily led to believe, either by our own misguided introspection or the ignorant assessment of others, that we are defined by the disease. Indeed, we attended the second World Parkinson’s Congress because we are “Parkies”. It is like the colour of our skin, our language, our creed.  It is our genetic predisposition and the accumulation of a life of absorbed toxins. But it is not who we are. On the other hand, we need to accept this unwelcome disease as a part of who we are so that others can do likewise. But we will no longer be those of the “hidden disease”. We are 4 to 6 million people with Parkinson’s, a disease that we are dedicated to defeat.

Belonging is not limited to identification with our fellow Parkies, marginalized in society by our membership in those ranks. We belong in the world of healthy people who often vacillate between ignorance and pity. We can contribute much to a world that must realize if one suffers then, to some extent, all suffer. Like the worldwide economic collapse we are currently seeing played out, we are incapable of insulating ourselves from each other. We who share Parkinson's are the vanguard for others who will face a fearful future of aging and its attributes, including, for some, PD. I am thankful for my PD family, but I cannot allow the comfort of that community to isolate me from a belonging beyond its boundaries.

Becoming is a word for the future. We need not accept a fatalistic destiny of demoralization. True, a degenerative disease has invaded our sovereignty, but how and at what speed it will advance cannot be predetermined.  Yes, the disease will likely challenge our definition of "normal", but just the process of aging, surviving, in this rapidly changing world will do that.  But do not lose hope.  Just think of the medical and pharmaceutical advances made in the past few years.  We are making significant headway in understanding what 200 years ago James Parkinson called the "shaking palsy".  In the meantime, what are we becoming?  How are we confronting this ominous opponent?  How are we living so that others are encouraged to fight on, to have hope and turn the tragedy of PD into the triumph of our God-given human spirit?   Rather than becoming more disabled, are we becoming more empowered?

Tomorrow, Thanksgiving day in Canada, I will not be thankful for Parkinson's disease, but I will truly be appreciative of Tom Isaac's reminder that I am not a victim but a warrior.  And I fight not alone but among a formidable fellowship of brave and supportive souls like Tom, Bryn, Jon, Vicki, Sara, Becky, Jo, Karen, Mark, Paul, John and others too numerous to mention.  They are my heroes for whom I am thankful.  They help me to become more than I would be without PD. 

Happy Thanksgiving from Canada.

See last year's Thanksgiving post,