Jimmy Choi
As painful cramping from dystonia, a symptom of Parkinson’s disease, shapes my left foot to resemble the club face of a 9-iron, my friend Jimmy Choi and I are sending texts to one another, just as we have done for years.
I met Jimmy seven years ago because we both have Parkinson’s. Our friendship has deepened over the years and means a great deal to my family and me.
My diagnosis came at age 48, and Jimmy’s at 26. I am now 56, and Jimmy is 49. Although it is appropriate for me to honor him for the wisdom and insights that came from stepping on the Parkinson’s road before I did, every now and then, I also remind him that I will always have the standing of his elder.
Jimmy and I met in New York while attending an event hosted by the Michael J. Fox Foundation for Parkinson’s Research. Displaying his many enviable and exemplary personal qualities, I quickly observed that he lives with an amplified and contagious hope for all who seek to get better at being human, whether they have Parkinson’s or not.
Within the Parkinson community, there are more stories about Jimmy’s gifts and graces than time or space for me to retell them! Many people touched by Parkinson’s know Jimmy—or at least know of him. He would hold a deserved place on any Mount Rushmore of Parkinson’s disease.
Go-To People
As one of my “go-to” people, I am texting Jimmy on this occasion out of concern for what I perceive to be symptomatic changes.
Now approaching eight years of living with the Parkinson’s Beast, I still feel well most of the time and can still enjoy doing what I did before my diagnosis. However, there are now occasions when my medications fall short of being as effective as they once were, at least at the same dosage; and I now enjoy less time between dosages than I did a year ago.
To move normally, I now require more of my primary medicine called Rytary (extended-release carbidopa/levodopa). My body hurts more than it used to, especially from dystonia’s cramping feet and toes. Also, the dreaded phenomenon of dyskinesia, involuntary movements that include rocking back and forth, swaying, and headbobbing, among other movements–what I call the wiggles–is no longer a stranger to me.
The doctors refer to the phenomenon I am experiencing as motor fluctuations. Whatever one calls them, they highly suck. Dyskinesia can wear you out and wear you down–physically, emotionally, and socially.
Unanticipated Surprises
I knew what would eventually happen, what would most likely mark my daily existence someday, at least on an intellectual level. I learned about all of this one beautiful, sunny October morning in 2016, a few months shy of my 49th birthday.
My primary care doctor at the time, a rockstar physician and even better human named Robyn McCarty, examined me and referred me to a specialist. One month later, I sat with this gifted, experienced, and wise neurologist, Dr. Tom Hill, who, with compassion, care, and candor, told me the truth.
More Human
As it turns out, progressive diseases really do have the audacity to progress—just as Tom said. What is more, this particular disease doesn’t give a damn about anything you or I think we can do to stop it, nor about any strategy for finally preventing it from going where it wants to go.
Nevertheless, I am confident that we will find even better ways to relieve Parkinson’s symptoms, to tame this Beast. So many brilliant, committed, and compassionate scientists and physicians are working tirelessly and devoting their professional lives to getting us there.
Eagerly, I await the day when no one navigates life, much less suffers, under any of Parkinson’s burdens. Tens of millions of people around the world eagerly await this day.
Its difficulties notwithstanding, Parkinson’s offers occasions for personal and relational transformation. Day after day, an illness I loathe calls upon me, regardless of how I am feeling, to offer others and to receive from them something akin to what the ancient Greeks called phileo–a deep-seated, embodied, deeply human form of love.
We recognize this love in ourselves and others as it emanates in principled kindness and consistent compassion, helps us value and strengthen our commitments to others and ourselves, and finally compels us to live—to live fully—with a sustained awareness of what matters most to us.
In these ways, a life with Parkinson’s invites lasting gratitude.
I am especially grateful for the sacred gift of “go-to” people, mine and yours.
Whether we meet them when receiving a diagnosis or as we learn to navigate unfamiliar and sometimes treacherous roads, we need people with contagious hope, just as we need truth-tellers.
We need people who understand that it is in our relationships—in mutually giving and receiving—that we discover our fuller humanity again and again.
Jimmy and Tom understood before I did that lasting in the Parkinson’s fight requires having people in our lives who are go-to people because they encourage us to be more human.
A generous view of humanity offers something more.
It extends to all of us the permission, and sometimes the encouragement, to stand face-to-face before life’s hardest challenges, including an insidious and inhumane illness—and with feet cramping, hands shaking, and body wiggling—to stand tall, arm-in-arm with one’s “go-to” people, and extend a most principled, authentic, valiant, and surely deserved invitation:
Kiss my most human ass!
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Allan Cole is Dean of the Steve Hicks School of Social Work at The University of Texas at Austin, where he also serves as the Bert Kruger Smith Centennial Professor in Social Work and, by courtesy, as Professor of Psychiatry and Behavioral Sciences at the Dell Medical School. Diagnosed with Parkinson’s in 2016 at the age of 48, he is the author or editor of 15 books on a range of topics related to chronic illness, bereavement, anxiety, and spirituality. His latest books are Jumping to the Skies: Additional Lessons from Parkinson’s Disease (Cascade, 2023) and Riding the Wave: Poems (Resource Publications, 0ff-press soon). Other recent books include Discerning the Way: Lessons from Parkinson’s Disease (Cascade), In the Care of Plenty: Poems (Resource Publications), and Counseling Persons with Parkinson’s Disease (Oxford University Press). With filmmaker and his creative partner Vanessa Reiser, his documentary titled “The Only Day We Have” aired in April of 2024 on PBS. You may watch it here.