STAYING POSITIVE WITH PARKINSON’S (Part 1)

Speech given to Parkinson's Society of British Colunbia Conference "Moving Forward" (October 31, 2010) - Part 1 of 3 Parts.

1940 was a magical year for movies. Bob Hope hosted the 12th Academy Awards for the first time, and the competition was extraordinarily fierce.  There was Stagecoach, Goodbye, Mr. Chips, Mr. Smith Goes to Washington, Of Mice and Men, and, perhaps the most famous, Gone with the Wind (which walked away with 10 Oscars).

Now, tell me which film is missing from that list of 1940 Academy award-winning movies?  Let me give you a hint. What do Bert Lahr, Ray Bolger and Jack Haley have in common?

The Wizard of Oz. While it only won a few second tier Oscars, it has become a rival to any of the other nominees from that year of great cinema.

There were 3 curious co-venturers that accompanied Dorothy on her magical mystery tour of the Land of Oz. They were all searching for something.   Little did these 3 oddities appreciate that they were, in combination, representative of people with Parkinson's disease. In fact, the movie itself can be seen as an allegory for how to approach this downright nasty neurological disease called Parkinson's. To use the words of Dorothy, those of us who have been diagnosed with PD can say, "Toto, I've a feeling we're not in Kansas any more." Life will never be “normal” again after entering this new reality of Parkinson’s.

As the story goes, soon after Dorothy is transported from Kansas to Oz she encounters her new friends with their interesting problems. First came the scarecrow. He struggled to keep his balance, found it difficult to walk straight, was weak and had poor posture. He apparently lacked some mental functionality and was searching for a brain. With Dorothy's help he set off to find one.

Next they meet the tin man. Dorothy found him in the forest, frozen, his joints unable to move, unable to speak, and somewhat helpless. With a little care, he was restored to some semblance of functionality, and joined with his rescuers in his quest for a heart.

Last came the cowardly lion. He wept easily, jumped when startled, and generally was shaking in fear about virtually everything. He desperately wanted to be brave. And so, with his newfound friends, they were off to see the Wizard who would solve their problems.

Despite their various needs and inadequacies, Dorothy and her 3 new friends endured numerous adventures and disillusionments. The cruelest of which was the unveiling of their false Messiah, a Wizard with more whiz than wisdom.

Now despite the fact that the Wizard was a hoax, Dorothy and her 3 friends seem to be willing to suspend their disbelief long enough to be convinced that the Wizard had the ability to get them what they needed.  Perhaps we can together learn something from them about how to move from PD victim to victor.

It was January 19, 2006. I was 53 years old, the founding partner of a successful law firm. I loved my job and had no plan to retire. I had been healthy my whole life, having competed in recreational triathlons for more than a dozen years. I had a great relationship with my wife of 32 years, and our 3 children were launching into their adult lives. I was blessed beyond what I had ever dreamed. And I believed that life would hold more of the same in the freedom years ahead. But all that was before I walked into a neurologist’s office to ask a simple question about an intermittent mild tremor in my right hand.

What followed was not tears or anguish, but simply shock.. It was really a form of denial. I fully believed that the doctor was right, but somehow could not imagine the diagnosis translating into anything other than an inconvenience. I did not want to believe that any disease might steal my profession, my athleticism or my confidence.

Well, it has taken a little time, and it has evolved very slowly, but it has become more than a minor convenience. I have become mostly left-handed. From shampooing my hair, brushing my teeth, using a fork to eat, I need my left hand to perform most of the things that my right hand would have normally done. I stopped being able to write, and shortly after could no longer effectively type.  I often found myself incredibly tired with a bone-deep fatigue.. I now have developed stiffness on my right side and sometimes experience pain, especially in my right big toe and right forearm, both of which seize up from time to time. I have lost my sense of smell almost entirely. I have gone through some times of sadness, which I would characterize as low-grade depression.

On the other hand, my balance has remained good, my cognitive functioning reasonably normal, and I have not had an episode of freezing up or dyskinesia. While I have made no particular secret of my PD, many people do not know that I have it, and when they find out they are surprised because I seem to have developed a knack for hiding its symptoms. While more than an inconvenience, life goes on pretty much as normal. I still work too much, exercise too little, say "yes" too many times.

But, like the 3 friends who accompanied Dorothy to find the Wizard, all ofus who share the diagnosis, at least to some extent, share an increasing number of problems.

Our response might be summed up in one tough question:

How do we defeat Parkinson's?.

Without sounding like a Wizard, let me suggest that there are 3 ways by which we can defeat Parkinson's disease and thereby stay positive.  We can beat it, treat it and cheat it of power, meeting it head on every day.  We will explore each in turn.

Part 2 tomorrow