Source: Davis Phinney Foundation

After the Diagnosis: An Elite Athlete Chooses Resolve

Personal Perspective: Lessons on living well with chronic disease.

By Connie Carpenter Phinney

My husband, Davis Phinney, was 41 years old when he was told, “You have Parkinson’s disease.” We accepted the news together in a worn and windowless Denver doctor’s office from a neurologist who later told us he was on the verge of retirement. We didn’t wonder about the number of times he’d dispensed this news, but by the weariness on his face, it must have been in the thousands.

What they don’t tell you upon diagnosis is how lost you feel when the rug containing your future is pulled out from under you. And, with a degenerative neurological disease like Parkinson’s, they don’t tell you about the myriad often-debilitating symptoms that you might experience, both seen and unseen. Later, we’d learn to refer to it more poetically as a constellation of symptoms as if they were entwined within the Milky Way. But diagnosis felt more like we were riding our bikes into a dark storm. We didn’t know how we would endure it, but we knew we were in it together. We resolved to live well together.

We could have waited, like many we have met who resisted telling employers, coworkers, family members, and friends. But Parkinson’s was a thief. It had stolen too much to keep his job as a television sports analyst, dampening his voice and making his hand tremor too violently to hold the microphone. It robbed him of his ability to work the long hours required of his job and took his ability to think clearly when he was fatigued, which was, by the time of diagnosis, too often. His television producers asked him why he wasn’t better prepared when he had trouble recalling key facts or statistics. Previously, his almost photographic memory had served him well, but now it failed him under pressure. When he slurred words together or his hand tremored holding the microphone, he was asked if he was nervous—or worse, had he been drinking? The more he tried to hide the symptoms, the worse they appeared.

We knew little about the disease when we told our children about the diagnosis before we made a public announcement. They had seen his hand tremor and knew he’d been more tired than normal, but when we put a name to it, our son—age 10—wanted to know specifically if Dad was dying.

I knew it was a life sentence, meaning there was no cure for Parkinson’s, but it wasn’t going to threaten his life—not then—and I did my best to ease his mind. Our daughter, a spry 6-year-old, wrapped her father in her arms and promised to cure him with kindness. Later, she’d study neuroscience to continue her quest for a cure and then get a master’s degree in public health because of her deep concerns about health equity.

The news wasn’t all bad for the kids: We told them he planned to reduce his travel schedule and be home more. We all missed him when he traveled so much for work.

The reactions of my children left me wondering what it had been like for me and my three brothers when our mom was diagnosed with what is now called the relapsing and remitting form of multiple sclerosis. What did my parents understand of the disease without the internet to search? Did our parents discuss Mom’s symptoms and diagnosis with each of us in an age-appropriate way, or had they shied away from disclosure? Had they explained why Mom wore a patch over the eye that no longer could see or used a cane to steady her balance when one leg was lame?

My mom was in her early 30s, I was 5, and the youngest of us had just been born at the time of her diagnosis. None of us remember the eye patch or the cane, or the news. We don’t remember her complaining, but we do remember having difficulty pronouncing “sclerosis” and how Mom preferred to refer to it as her condition. We knew she was tired and had to take daily naps, but she was still our chief caretaker. She would always be Mom.

We knew something was different—that she was different—but ours wasn’t the house you avoided; it was the house you were drawn to because of Mom. Her smile was kinetic and her demeanor inviting. Our playroom shimmered and buzzed with games of Risk and Yahtzee. It was full of crayons and markers, we had balls to take out into the yard to play with, and a basement where my brothers shot hockey pucks against a wall. She taught me to sew on her old Singer sewing machine.

Our house was full of life, not disease. It was full of ability, not disability. Mom always tried to put us first, often neglecting herself. It was her resolve that got my attention as I grew older. She was steadfast in her desire to normalize her experience with chronic illness; with her condition.

Recently, I’ve thought about the distinction between the steely resolve I developed as an Olympic athlete and the resolution my parents made when confronting MS. My resolve was focused on a sport where I could choose when to push hard, when to take it easy, or even quit. Not so with disease: Mom didn’t have the option to take it easy. Her resolution to raise her kids nourished her through the hard times when MS extracted its greatest toll. Dad resolved to come home from work promptly at 5 p.m. to never miss a chance to help at hockey practice or throw a ball in the backyard. He didn’t run away from his responsibility; he ran toward it.

His example inspired me when we confronted my husband’s diagnosis and were introduced to the constellation of symptoms. “We can do this,” I said with resolve, even when I had no idea what “this” was or what would be asked of me as a caretaker and care partner. Being a former elite cyclist gave me a level of fearlessness that suited the demands of my sport, but the seeds of my capacity had already been planted and taken root in the deep soil of my childhood. The examples set by my parents provided sustenance for me then, and now.

My mother passed away before my kids were born, and many of the questions I have for her about parenting and about coping with chronic illness have been left unanswered. However, her example outlived her, helping us to not let disease be center stage, to strive to live well, play hard and smile often. My father’s affable and attentive caring example was stamped in my own DNA. I live by their example, resolving to show up, do my best, and pass it on.

About the Author

Connie Carpenter Phinney, a former Olympic speed skater and cyclist, is the co-founder and board member of the Davis Phinney Foundation for Parkinson’s.  For more information, visit https://davisphinneyfoundation.org/

Article courtesy of Psychology Today – https://www.psychologytoday.com/