“The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.” Ben Okri
“Affliction comes to us, not to make us sad but sober; not to make us sorry but wise.” H.G. Wells
An opening story: Many years ago, I had someone visit my undergraduate class (Biology of Blood Diseases) to describe his life with leukemia. He gave a complete account of his cancer that included two bone marrow transplants and numerous cytotoxic chemotherapy/radiotherapy treatments. He then described his life-passion as a full-time physician and a competitive triathlete. He was now working part-time and instead of training for triathelons, he was walking and riding a bike. He had refocused his career on outreach, service and cancer education. He closed by saying “At the end of the day, you decide to either live dying or die living, and I choose living.”
He had no regrets.
Life with Parkinson’s: Having a neurodegenerative disorder like Parkinson’s is not like having acute leukemia. What unites them is the person’s attitude in dealing with the disorder; it helps to have a hopeful attitude with resilience, and importantly, the will to live positively. Yesterday, I played 18 holes of golf (my usual Sunday game); I walked 9-holes and then rode a cart for 9-holes. Was I upset that I had to ride a golf cart for half-the-round? No. Each day I balance the dopamine I have left with the daily doses of dopamine agonist I take versus the total amount of energy expended. It was a beautiful day to play golf with some dear friends.
No regrets. Live positively.
Two big unknowns for anyone with Parkinson’s are the rate of disease progression and the extent of affliction. How do you describe the typical rate of progression? Parkinson’s is not like sticking your hand into a hornet’s nest and the resultant instantaneous stings; it’s more like being covered in beach sand at low tide while you patiently wait for the slowly approaching ocean’s high tide. The working plan is to maximize my effort to slow disease progression and to effectively manage my symptoms. Thus, I strive to live positively and hopeful in the presence of my shadow named Parkinson’s.
No regrets. Remain hopeful. Live positively.
Positively Parkinson’s: We balance our personal-rheostat between life and career, family and friends, and service and other activities. Living positively will certainly augment your meaningful life. My daily life is much like yours except for some interruptions by Parkinson’s. I now need 15-20 extra minutes before I’m ready to leave home for work. If needed, I can now use my left hand for many tasks if my right hand tremor acts up. I stretch frequently to remind my body of what it once felt like. I now require more sleep then you, yet achieving it remains a nightly challenge. Life could be much worse, these are just some of the daily inconveniences of Parkinson’s.
No regrets. Remain hopeful. Stay strong. Live positively.
In “Man’s Search for Meaning”, Viktor Frankl wrote about being a Holocaust survivor and his search for the purpose of life. Achieving a meaningful life today resonates well with Frankl’s purposes of life: seek out purposeful work and service; fill your world with loving relationships; and when faced with hardship and/or suffering, bring forth courage with resiliency. In the absence or the presence of Parkinson’s, achieving a meaningful life is a formidable challenge; nevertheless, enjoy your life immensely.
No regrets. Remain hopeful. Stay strong. Choose courage and use compassion. Love passionately. Live positively.
“We must be willing to get rid of the life we planned, so as to have the life that is waiting for us.” Joseph Campbell