Grit and determination can help you get ahead when you have Parkinson’s

“Singing a happy tune stops you from thinking bad thoughts. Next time you feel a panic attack coming, try singing, humming or whistling, or even just smiling”

Carol Clupny

That was just one of the insightful comments that author Carol Clupny shared with us today at a meeting for women with Parkinson’s. Carol was diagnosed with Parkinson’s 12 years ago. Like many of us, Carol did nothing, spending much of her time at home in a comfortable chair for awhile. One day she decided to take her life back by forcing herself out of her easy chair and walking to the mail box. The next day she  crossed the street. She continued walking and a year later she walked the Camino de Santiago*, a 500 mile trek across northern Spain. That first walk was the beginning of her Adventures with Parkinson’s. She kept returning until she had walked over 1000 miles.  Carol then went on to do things, mostly physical challenges, that she never would have considered, even before her diagnosis.

The Ribbon of Road Ahead

Last spring, Carol published her book The Ribbon of Road Ahead, which recounts 3 of the 4 times that she walked on The Camino in a 4 year span, as well as her 4 rides across Iowa on a tandem bike RAGBRAI (Register’s Annual Great Bicycle Ride Across Iowa) bicycle ride, and her experience having DBS (Deep Brain Stimulation) surgery to relieve her PD symptoms.

After reading an article on cycling as it mitigates some of the symptoms of Parkinsons, Carol and her husband Charlie started cycling and have ridden the RAGBRAI four times.  First on a borrowed tandem they nicknamed THE BIG YELLOW MOSQUITO EATER and in three subsequent rides on their own University of Oregon green and yellow colored tandem GREPEDO.

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Carol and her hiking backpack
photo by Sharon Krischer

In the last 10 years, Carol has been determined to beat PD what ever way she could. Before the onset of PD, Carol and her husband Charlie would go horseback riding, hiking in the nearby mountains in eastern Oregon, and traveling. Sometime after her diagnosis, everything changed. Carol sought out more and more difficult challenges, with international travel, long distance biking and hiking. And now she has shown how grit and determination to do something enabled her to become, in a sense, superhuman. Doing things she never would have dreamed possible such as getting involved in the Parkinson’s community, writing a book, and public speaking.

We talked about that during our time together. So many people we know with PD have taken on challenges that the average person would never dream of. Someone like fellow person with PD, Jimmy Choi, and his exploits on American Ninja Warrior is just one extreme example. Were we always like that or is it something new after our PD onset? What is it about Parkinson’s that many of us approach life in this way? Is it the lack of dopamine? Our medications?

Carol and Charlie on the Road

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Mr. Twitchy, Carol, Sharon and Doolie
photo by Charlie Clupny

Carol and Charlie pulled into our driveway on Saturday with their new 22 foot camper van Doolie. This has replaced the old camper that they used to get to and from Iowa for the bicycle ride. With the van, they are traveling in comfort, often for weeks at a time, all around the US. For their current book tour, Charlie even had window clings made to fit the windows, advertising Carol’s book! Now that is dedication.

Carol and Charlie, I have one suggestion for you. Since the RAGBRAI starts when you dip your back bicycle tire in the Missouri River and ends when you put your front tire in the Mississippi, why don’t you shorten the ride to just a few hours by starting on the Missouri just west of St. Louis, my home town, and finish 30 miles later at the Mississippi where the two rivers meet. Mr. Twitchy and I would join you on that ride!

* The Camino de Santiago (the Way of St. James) is a large network of ancient pilgrim routes stretching across Europe and coming together at the tomb of St. James (Santiago in Spanish) in Santiago de Compostela in north-west Spain.

The Ribbon of Road Ahead is available either on Carol’s website or on Amazon.

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2 responses to “Grit and determination can help you get ahead when you have Parkinson’s”

  1. Victoria King Miller Avatar
    Victoria King Miller

    What an inspiration Carol is! I want to read this book! Being from Iowa, I am inspired by her trek across the state. I have gone to variious places to “watch” the cyclist ride but have never ridden myself.

  2. Is there anyone in the Parkinson’s community that Jimmy Choi and Allie Topperwein’s stories haven’t influenced?!! We need more people like them and Carol (and you) living fully in spite of PD to inspire us all (including people without PD). It’s easy to get apathetic and fatigued. Here’s to all those stories that keep us YOPDs creating new dreams! I love these heroic overcoming stories!

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A Note To My Readers


I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.