I first heard the words Parkinson’s disease as they pertained to me in 1999. I think the exchange went something like this:
DOC: I don’t know for sure but you may have Parkinson’s disease.
DOC: Parkinson’s disease.
DOC: I can’t be certain, but, it could be. We’ll need an MRI and some blood work to rule out a few things.
It two more years before I got a final diagnosis from a movement disorder specialist.
It takes some time to zero in on the disease. Parkinson’s disease is not something you wake up with one day and say “I have Parkinson’s disease.” It comes on slowly over the course of a year or two. It dawdles along snatching a cell here and a cell there, leisurely seizing one’s ability to move, leaving a personification of itself in its plodding wake.
Additionally, PD is not easily diagnosed. Although there are no lab tests to definitively diagnose Parkinson’s disease, patients will often undergo a series of tests – blood tests, urine tests, CT scans, MRI scans – to exclude the possibility of other disorders. Ultimately, diagnosis requires a systematic neurological exam by a movement disorder specialist. The exam includes testing reflexes and muscle strength throughout the body, coordination, balance, and other details of movement.
It was a Friday when I was diagnosed. Afterward, Josa and I went for lunch. We sat, silent. I looked across the table at her. She smiled and said, “We’ll be fine.”
I believed her.
“You can handle this, I know you can.”
I believed her.
I took a sip of my beer and said the words aloud “Parkinson’s disease.” I heard the words as if for the first time, “Parkinson’s disease.” Interesting. Who would have thought? So, now what?
That night I did not sleep much. It was a long, dark, and lonely night. It was agonizing. My mind frantically raced from thought to thought. A thousand questions and concerns swirled through my head as I pondered the meaning of my diagnosis.
I finally fell into a deep sleep shortly before sunrise. My eyes popped open at about 7:30am. Although my sleep was short, it was deep; one of those sleeps that leave you wondering who and where you are when you wake. Slowly I pulled myself from the fog trying to recount the events of the day before. I remember tamales and beer at lunch and I remember Josa saying, “You can handle this.”
Handle this? Handle what?
I remember the doctor’s office. But why? What was it?
Then it hit me. Oh, yeah, I have a chronic degenerative disorder of the central nervous system for which there is no cure! Yikes!
I had to laugh and laugh I did. Life comes at you sometimes and sometimes ya just gotta sit back and say Okay, I give! We had just gone through a very costly medical situation that rendered us nearly penniless (a story for another time). Additionally, we were dealing with my ill father who was in need of 24-hour care. I, as power of attorney, was having to manage his affairs and deal with family, doctors, attorneys, real estate agents, insurance agents, Title 19 and so on. On top of that I had just started a new business, we had just bought a new home and we were in the process of adopting a child. Now this. Okay, I give!
Like a mindfulness bell it woke me. I felt alive. A sense of clarity and levity came over me. I felt oddly prepared to get on with this next phase of my life. I saw a fork in the road and I saw it clearly; two paths and just one answer. Everything in my life has prepared me for this moment. I don’t judge my luck. I accept it for what it is, a simple fact and out of my control. My journey is set. Each step along the way is the only step. No looking back. No looking forward. There is only this step. And so it goes. I have Parkinson’s disease. This must be a gift.