This is one of a series of “sneak peek” pieces from the sixth edition of the Every Victory Counts® manual, which will be released this fall.
My Parkinson’s diagnosis arrived on my doorstep in January 2018. I was 47 years old.
I was no stranger to Parkinson’s, having watched my father live with it for 22 years. “Fair ended in third grade,” he used to say. When Parkinson’s bullied its way into my life like an unwelcome guest, I briefly wallowed in self-pity, anger, and shock. Depression and anxiety clouded my vision and seemingly strangled my hopes and dreams. I was filled with panic, anger, and incapacitating fear of the unknown. I desperately yearned for my father’s wise counsel, comfort, and love.
He had passed away six years before, so I imagined him with me. Had my father been with me that day the dreaded news arrived, he would have hugged me, cried with me, and told me that I could make something beautiful of this one life I had to live. He would have encouraged me to make the best of the situation and to give back to leave the world a little better for the next traveler.
So that is what I did. I dug in my heels, got back up, brushed myself off, and I committed to turning something scary into something magical.
Having been a nurse anesthetist (though I could no longer work in the field that I loved), I knew that being a nurse isn’t something that you can simply put down and set aside. Being a nurse was as much a part of me as my very heartbeat. Being a nurse is what taught me to advocate for others. But, because of Parkinson’s, I retired from my career, and I slowly began to fill my days with new adventures. I felt alone, so I searched for other young people with Parkinson’s. I started a support group for YOPD in my own community. I began Rock Steady Boxing, Pilates, and dance. I combined my love for travel with my newfound ever-present companion, Parkinson’s.
My father was proud to ski for 17 years with Parkinson’s, and we spent many a trip together doing what he loved most. Parkinson’s couldn’t take that away. He used to call carbidopa/levodopa his “go fast pills,” and down we went, over each hill and every bump together. Thinking of this, I went on a Parkinson’s ski retreat in Breckenridge, Colorado. There, I learned about the Davis Phinney Foundation and fostered new friendships with several board members. My love for travel took me to the World Parkinson Congress in Kyoto, Japan, then to other events. I began networking with many wonderful Parkinson’s advocates from around the globe. I became an Ambassador for the Davis Phinney Foundation. I had found my tribe!
Twelve years sober, I started helping physicians and nurses who battled addiction and substance abuse. I began sharing my story with others and spoke publicly about Parkinson’s, my own recovery story in sobriety, and about handling adversity with grace, gratitude, and grit. I started coaching and mentoring others on how to live well despite challenges.
Though it’s true that Parkinson’s took away some things I loved, it has gifted me much more than it has taken. Parkinson’s has given me the gift of presence and living in the moment. None of us knows what tomorrow might bring. Since my diagnosis, I have discovered that I love poetry. I have tried improv and writing. I am a public speaker, and I love to inspire others to overcome their own challenges. I married the love of my life. I got to retire early, which has allowed me the freedom to explore other parts of myself that I never even knew before. I learned to garden and cook. I started exercising and found a whole new group of peers, others living well with Parkinson’s. These are my friends and colleagues now. And I take the best of me everywhere I go.
Oddly enough, I feel closer to my father than ever before, and I know that he is with me. Every morning I wake up when the sun or my dog kisses my face, and I decide that today will be a great day.
Want to be inspired by more people living well with parkinson's?
Check out our Moments of Victory page, where people just like you are waking up every day, and doing everything they can to live well with Parkinson's.