The well-intended subterfuge worked for about five years before the condition forced my hand, as it were. Those who saw me on a regular basis began to notice symptoms that were not so subtle anymore, and were kind enough to gently inquire. Again I deflected, feigning ignorance.
Privately, I had been researching neurological conditions for over a year. I didn’t fail to notice that the Michael J. Fox I saw in televised interviews discussing his battle with Parkinson’s Disease looked disconcertingly like the Michael J. Haley I saw when I looked in the mirror each day. By this time, I was convinced that if my doctor told me it was something other than Parkinson’s, she’d be wrong. So, I finally submitted myself for medical evaluation in the summer of 2003 and, after the diagnosis of Parkinson’s confirmed my worst suspicions, I finally came clean with my family, close friends, and professional associates. I was a month shy of my 43rd birthday.
What is Parkinson’s disease?
Parkinson’s disease is a long-term degenerative disorder of the central nervous system that affects the motor system. The symptoms of the disease result from the death of cells in the substantia nigra, the region of the brain that produces dopamine. Dopamine functions as a neurotransmitter, carrying messages from our brains throughout our nervous system, enabling the control of motor functions.
Parkinson’s is commonly characterized by uncontrollable shaking and tremors on one end of the spectrum, freezing and the loss of speech and dexterity on the other end. All physical activity is impacted. For example, when I am at my worst, my feet feel like they are planted in cement when I attempt to walk. Minor tasks like tying shoes, buttoning a shirt, handling a wallet are accomplished only after an exhausting effort.
The action I take:
I take levodopa – the enzyme my body no longer makes on its own – four times per day.
What happens in my body:
Levodopa is converted to dopamine via the action of a naturally occurring enzyme called DOPA decarboxylase. This occurs both in the peripheral circulation and in the central nervous system after levodopa has crossed the blood-brain barrier. When this barrier is crossed, the resulting dopamine surges through my central nervous system, unlocking blocked pathways and delivering the brain’s messages. When this chemical process works as designed, it is a glorious, liberating feeling. On my worst/best days, I can transform from depressed and immobile to skipping in elation within a span of 20 seconds. Witnesses to this transformation will look on in astonishment. It’s a beautiful thing when this happens – even though I know the liberty is fleeting (a few hours at best).
The PD Community:
I am so thankful that I was born in the very year that the treatment for Parkinson’s was finally developed to a point that medication was readily available to me when I was diagnosed a dozen years ago. I’m so appreciative of the scientific method and the work of hundreds of researchers the world over. I’m a lucky guy; if I had walked the earth just 20 years earlier I’d be struggling to take each step without the medications that are available to my generation. I am also fortunate that I happen to live in close proximity to the Parkinson’s Institute in Sunnyvale, California, where their teams of scientists are hard at work searching for a cure, as well as a better understanding of the underlying causes of the disease. I participate in every clinical trial I can qualify for in an effort to help them build a larger body of knowledge.
What I have learned:
I’m beginning to realize that living with Parkinson’s must be a little like managing a Major League Baseball team. It’s a long season. Even the best teams are going to have the occasional losing streak. One of the keys to success is to recognize you’re going to have great days when all your moves work to perfection, and, conversely, days when nothing works at all and you get your butt handed to you. The trick is to remain even-keeled mentally and emotionally through both ends of the spectrum of success. Sure, there are going to be days when I’m tempted to flip the post-game spread in frustration, but taking a steady, measured, patient, long view of the season is the most sensible, winning strategy.