This week, we've invited our YOPD Council leaders (Amy, Steve, Gaynor, Kat, Tom, Erin, Heather, and Kevin) to take over the blog and share their stories. We hope you're as inspired by them as we are.
Written by Amy Montemarano, Davis Phinney Foundation YOPD Council Leader
Those of us with YOPD have told our stories many times. In my mid-forties, I had a busy life as a mom, wife, lawyer, professor. I met my friends for 5:30 a.m. runs and planned vacations around biking adventures and road races. I felt rich with relationships, and I was strong and healthy. I had never taken a pharmaceutical drug in my life.
Then there were little things.
My pinky started to hurt and stiffen, as if it had a lot of scar tissue, although I couldn’t remember injuring it. My arms trembled uncontrollably after a second push-up. People started passing me on my daily two-mile march to work. Everything ached – my wrists, hips, neck, back.
Then my arm stopped swinging. My 12-year-old daughter noticed it first. She laughed at my “zombie walk,” and I laughed too and pretended that I was doing it on purpose. Soon after that, I sometimes couldn’t remember how to walk. I had to concentrate. Everything felt misaligned and off-kilter, like I was walking on the deck of a sailboat that was at full tilt, yet my eyes saw the flat horizon of the sidewalk in front of me. Within a few months, I had to stop every few blocks to reboot my body and prepare for the next few blocks.
I went to the neurologist late on a Friday afternoon; three medical students were observing as she put me through the ten minutes of basic toe-tapping and fingers-to-nose tests. After the tests, the sum total of the neurologist’s words to me, other than setting up another appointment in several months, were, “It’s Parkinson’s. Do you want to take the meds?” I wanted to turn to the students – who by that time were visibly uncomfortable watching me try to maintain my composure – and tell them not to learn from that neurologist how to tell someone she has Parkinson’s. I left the doctor’s office convinced that my life was over.
I wondered where I would get my courage. I soon learned that I wouldn’t have to dive too deep to find some because there was a whole ocean of courage already created by people like Davis Phinney and Michael J. Fox and Brian Grant and so many others whose names are not as recognizable but whose lives are just as inspiring.
And five and a half years later, my life is far from over.
Instead of describing all the different ways Parkinson’s has made my life difficult, I want to explain some of the ways my life is better. And those ways are captured beautifully in what someone said to me after I told her about my diagnosis. She said, “You have no idea what a gift you have just been given.” When I tell other people about her response, they are taken aback by her callousness and they become offended on my behalf.
The person who said this to me was a woman from my neighborhood who I would see regularly while we walked our dogs. She had just buried her mother after caring for her as Alzheimer’s took over her mother’s mind and body. As we walked our dogs, we often talked about the awfulness of what they were both going through. What she meant when she said I had received a gift was this: Parkinson’s is not a death sentence. We’re all living on borrowed time, and through my diagnosis, I just got the wake-up call to remind me of that. The veil was lifted for me while mostly everybody else is distracted by their screens and workaday lives.
That’s the gift. What I do with it is up to me.
I have tried to honor her mother and every other person whose life has ended too early by making the conscious daily decision to not dwell on my complaints and instead live the hell out of life. Since being diagnosed, I have continued teaching full-time, built a career coaching practice for people who have experienced similar full stops, had wild family adventures in New Zealand and Europe, reconnected with old friends, confirmed that I married well, met SOOO many people living through difficulty with grace, and best of all, been amazed by my daughters as they grow into good and beautiful young women. I’m so grateful for all the others who have decided not to stay hidden and have shared their courage.
I don’t mean to sound too sunny. Make no mistake about it: Parkinson’s is a thief who robs you of your most precious possessions right in front of you while you stand there helplessly watching. I still work hard on a daily basis, and not always successfully, to let go of the sadness, fear, and loss. And on the days when I’m really struggling, there’s one thing I turn to in order to flip the script: revenge.
It’s a little hard to explain, but it works like this.
One of the emotions that rises to the surface of life with Parkinson’s is anger. I’m pissed, pure and simple. At everything. At that neurologist who diagnosed me, the med students who stared at me like I was an exhibit instead of a person. I’m way pissed at the U.S. government and at Syngenta, the ag-tech corporation that continues to profit from increasing use of its herbicide paraquat in the U.S. even though it’s banned in other countries because of its strong correlation with Parkinson’s. I’m angry that Davis Phinney had to leave the pinnacle of sport before he was ready; that all Michael J. Fox wanted to do was act and entertain, not become the brave face of suffering for generations. I am so angry for all the people every year, especially the young ones, whose lives shift from underneath them when they get the diagnosis.
Anger, however, is not particularly useful on its own. It usually just depletes the angry person. You have to put a twist on it. If you research the psychology and neuroscience of revenge, you’ll find that engaging in the act of revenge – or even just thinking about it – activates the same reward circuitry of the brain that dopamine does. Which I have taken to mean, accurately or not, that thinking about getting revenge on Parkinson’s may actually be therapeutic.
It’s all in how you frame things. Parkinson’s is the relentless bully who only wants me to give up, leave the game, and go home. I won’t do that. Every moment I spend laughing or crying with abandon, leaning into my husband on the couch as we watch an episode of Schitt’s Creek, teaching my daughters how to drive, holding my dog tight as he trembles with fear through a thunderstorm, waving to my mom over Zoom, sharing confidences with a friend, connecting with a student, walking, hiking, kayaking, dancing, feeling the warmth of the sunshine, planning trips with my sister, reading a good book, hearing my brother’s laugh, beating my own PR on the bike, doing yoga, pilates, lifting weights, singing badly, dropping my oldest daughter off at college, FaceTiming her every night, learning new things, watching my younger daughter play soccer, smiling back at her one-in-a-million grin, helping a stranger – all these things that I still can do – these are moments that Parkinson’s wants to steal from me. And in each one of these moments, I imagine myself to be like Robert De Niro as Vito Corleone returning to Sicily to exact his revenge, and Don Ciccio is Parkinson’s.
And it feels really good.
This condition (I refuse to call it a disease) called Parkinson’s forces you to be creative. Which is a good thing, because if I could give only one piece of advice to those who are newly diagnosed, it would be this: you have been given the gift to rewrite your story.
May it be as good as The Godfather, Part II.
With Love, Amy
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