Presenting the Dichotomy of Parkinson's Disease

I was caught. Pierced by both proverbial horns of a dilemma. The puncturing took place as I was exiting the Annual General Meeting of the Parkinson's Society of British Columbia. Diane Robinson, the CEO, was saying her goodbyes to the several hundred who had attended. They were in various states of ambulatory awkwardness, from motorized wheelchairs to walkers to canes to writhing with dyskinesia to limping. Each one represented a stage of PD's progress that, to put it mildly, I did not look forward to. I was the last to leave, as if marking my beginner’s place in devolution of the disease.

While discussing this blog, and the recent posting on avoiding words such as "suffering with" or "afflicted by" when describing those of us with Parkinson’s, Diane asked, "Then how do I draw attention to the need for awareness of and research funding for this terrible disease?" The question set off a chain reaction of realizations for me, like the long line of dominoes we, as children, painstakingly stood on end, perfectly spaced, only to watch them sequentially collapse, one striking the next along the snaking path we had created until none remained vertical. I could not keep my logic from collapsing.  There, prostrate, lay my arguments for a singular commitment to positivism.

Perhaps I realized what I have known all along; people with Parkinson's are faced with a conundrum. If you ignore the pain and pathos of the disease you create a falsehood, relegating the disease to virtual obscurity. It becomes, as it was before being profiled by the likes of Michael J. Fox, ignored as an old person's disease that is just part of aging. But, if you focus on the reality of the suffering, you risk communicating a desperate hopelessness that leaves depression in its wake. Truly, this represents a dichotomy.

For a few minutes I scrambled for an answer to the conundrum. Was I misguided? Should I rename the blog? Was this all my charade of denial? In my desperate attempt to be positive had I become Pollyanna-ish?

Of course, you must be saying, there can two equally valid premises (the Greek root for the word "dilemma"). Both can have their place. Like the concluding line from that old chewing gum commercial where twins are debating whether it brightens teeth or freshens breath, "Stop, you're both right!"

The solution is like a lawyer’s favourite answer to almost any question, “It depends”. PD has more than one face. Like those struggling with the daily battle, each person will describe it differently at different times. Sometimes when dyskinetic thrashing takes over there can be little doubt the disease is cruel and demoralizing, tossing its powerless victim about like a rag doll caught in the mouth of a vicious dog. At other times when toes curl upwards with distonia, or posture bends as if under some unbearable weight, even ‘painful’ is an inadequate descriptor. But those of us who have PD rarely want pity or anyone feeling sorry for us for fear that we too will feel that way. We want to be encouraged, made to laugh in the face of this adversity. Yes, we want to be honest with others so that they might understand the reality of living with Parkinson’s disease, at least to some degree. But we cannot live there, lest that reality block the sunshine from our days.

Like most things, telling folks about PD requires balance, that ever-changing dynamic state that varies with the speaker, the listener and the circumstances. The repertoire to describe must not be limited. There is room, and indeed a need, for both humour and tears, stories of defeat and victory, statistics and sincere smiles. Parkinson’s does not come in ‘one size fits all’. Nor should it be described as such.