Facing the Reality of the Parkinson's Diagnosis
It took about two years for my physicians to sort through the array of maladies I had before ultimately reaching the decision it was Parkinson's. In hindsight, it was a distinct diagnosis. But it reminded me of something Arthur Ashe said, "You've got to get to the stage in life where going for it is more important than winning or losing." Leaving my neurologist's office with my first prescription left me numb, not stunned. And it left me sad not glad. The name of Parkinson's was now a part of my existence; as this diagnosis becomes attached to about seven people per hour every day of the year in the USA.
Living with Parkinson's becomes the everyday reality
Within an hour of taking the first dose of ropinirole (dopamine agonist), I realized that my new life with Parkinson's had started. And there was a glimmer of goodness that day when I felt the dopamine agonist kick-in, and it melted away my stiffness. Seven years later, it's a combination of carbidopa/levodopa and dopamine agonist, but the same feeling exists each day when I take my medication. Giving me a gentle reminder, yes, you really do have Parkinson's. Reading these words reaffirmed that I had begun a new life, "This diagnosis is a reminder that this is the life you've got. And you're not getting another one. Whatever has happened, you have to take this growth and treasure and protect it." - Elizabeth Edwards
Crossing the bridge to live the new life with Parkinson's was difficult
However, I have no real explanation of why I had such a hard time accepting the diagnosis, was it stubbornness, denial, embarrassment, stupidity, what was it? For some months of the first year with Parkinson's, well, I spent it pretending that nothing was wrong. I learned to eat with my left hand, knowing that my stiffness and affected side was my right. This was based on some silly rationale that by learning to use my left side would better balance me over the long haul — sheer stupidity. Ultimately, I realized that hiding behind an invisible wall prevented me from moving forward with the knowledge of my Parkinson's.
Furthermore, it didn't keep my Parkinson's from being recognized by others. A neurologist-colleague told me, "I watched you for a couple of years convinced you had Parkinson's. HIPAA Regulations prevented me from talking to you about it. I just hoped you were receiving the best possible care." Several months into my diagnosis, I sought out this neurologist's advice. I had become convinced that pretending not to have Parkinson's was becoming a nuisance. The words of David Ignatow started to make sense, "The burden of living one's own life is experiencing sensations that no one else can share."
Choosing life with Parkinson's
Not initially facing the reality of Parkinson's was just a mistake on my part. I had told my immediate family (two older sisters), and I had informed the members of my laboratory group. However, sharing the diagnosis with close friends was just not done. Somewhere in the depths of my mind, I was also a little concerned with the notion of losing my job.
I gathered my wits and thought deeply about what mattered more, living as the real person with Parkinson's or living shielded behind a facade? I chose to live my own life in the presence of Parkinson's.
Everything got better, much better, and it happened immediately. Regaining the support of others felt like the early springtime sun and rains providing nourishment to the emerging flowers. Finally, I realized that your real friends and colleagues would not abandon you, even in the presence of Parkinson's.
“Live your life being positive, keep your life in the present moment, and be persistent and persuasive with your life in the world of Parkinson’s.” - Frank C. Church
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