5 Lessons Learned in 5 Years with Parkinson's Disease

It was 5 years ago today. On the morning of January 19, 2006 Renae and I walked out of the neurologist’s office at St. Paul’s Hospital with a diagnosis that changed my life. Nothing was noticeably different, but in fact everything was different. Try as I might to pretend otherwise, I knew it. My loving wife was stunned when as we exited the doctor's office I nonchalantly asked her, "Where should we have lunch before I get back to work?"  Inside I was trying to process the uncertainty of it all. I felt like a civilian who had just been conscripted to fight a war I did not understand. I had no idea what I would experience in the days, months and years ahead. I was afraid but did not know why because it was all so vague and alien to the point of immobilizing me on the inside, leaving me unable to process any of it. So I just continued on like nothing had happened that morning.

Five years have passed. The lightheaded days as a “newly diagnosed” PWP (person with Parkinson’s) have disappeared. My diagnosis is rarely “news” to anyone anymore. The disease has made its promised progress, slowly taking captive more of the normal functioning of my body each year. To some extent PD holds me as a prisoner of war, leaving my right side shaking most of the time and my muscles stiff and weak from the strain of it all. It wakes me in the middle of the night to punish me with sleep deprivation, leaving me rattled, anxious and craving rest. This disease is relentless, incessantly interfering with my daily functioning. When you most want to be free of its oppression it becomes obvious and omnipotent. My medications, jail keepers themselves, wrestle with PD for control, leaving me caught in the middle wondering who is the more dangerous taskmaster.

Despite the inexorable march of my enemy, it has far from defeated me. Its forward forces of self-pity and depression have not claimed a foothold, at least for now. For I have been the beneficiary of this invasion. I have been a student who has learned much from the tenacious teacher, Professor Parkinson.

These are just 5 of the lessons learned in my 5 years with Parkinson’s disease.

1. Weaknesses can make you stronger. The old Nietzsche saying, “What does not kill me makes me stronger” is almost right. PD can make me stronger. Being confronted with my own weakness and vulnerability can be a gift. I take life and health less for granted now. I have learned that time is a non-renewable resource to be cherished and “spent” with care and deliberation, but without spoiling the serendipitous moments.

2. Secrets take a lot of energy to keep hidden. I feared, and to some extent still do, that friends, colleagues, clients and others would shrink away from the disclosure of my secret. Few of us are comfortable with things we don’t understand. PD can be a scary and distracting disease to be around. I had always wanted to be transparent about who I was. But I knew that disclosure of my dearth of dopamine could risk rejection, so I hid it most of the time. This was exhausting and, while the disease does not define me, it is a part of who I am. I realized I could not be accepted for who I was when I took great pains to hide the ‘Parky’ part. My secret is now out and the risk of rejection remains largely unrealized.

3. Life’s uncertainties can produce focused living. What did I want out of life while I had the ability to pursue it? Sure, Parkinson’s might take 20 or more years to immobilize me, and a cure might be found before then, but how could I be more intentional in living the “good” years I have right now? My ‘bucket list’ and New Years Resolutions have become a focal point for thinking this through; a roadmap and itinerary for adventure.

4. Acceptance and affirmation can come from inadequacy and insecurity. My initial response to the diagnosis was a type of denial. “This disease won’t affect me much,” I said self-deceptively. But soon the false bravado lost its ‘oomph’ and a loss of confidence and sense of inadequacy began to creep in. Sometimes the PD questioned my worth as a professional and a person, my capability and capacity for contribution. It was through the support of those reading this blog and the help of many of my fellow PWP that I began to see through Parkinson's propaganda of self-doubt.

5. Obstacles present opportunities to overcome. I have always enjoyed challenges. I get bored with repetition. PD is, and will likely remain, a giant lifelong challenge for me. But with help from family and friends, and the presence of my faith, I am up for taking it on. After all, the alternative is to just quit. I am committed to defeat the enemy by living life to the fullest. If my opponent proves too strong for me one day, then I have vowed to go down fighting. My goal is to encourage others to do likewise and win this war one day at a time.

5 years, 5 lessons, and lots more to come.