signing books at the Friends of the Library event

 

 

 

 

 

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?

I absolutely loved  your book. Reading it was almost like listening to your stories at the dinner table at a gite on the chemin.  Your style of writing is so natural.  I love it!  Lena Sorge,  Germany.

This is a must-read for anyone who often get attacked by the little words “can’t” and “this is too hard for me”, and also those who have PD themselves or someone close to them is diagnosed with it – you’ll see how a person can truly LIVE with it (caps intended).

The author of this book is one of the lightest, most active, wise and liveliest people I have ever met, and Carol’s stories show how to accept and shape the reality instead of feeling sorry for oneself. It also gives a clear insight on the nature of PD from a first-hand point of view, which is super useful, because no, we cannot imagine.

It is a beautiful, fun and inspirational tribute to a fulfilled life, taking it as it is and accepting what cannot be changed. In one sentence – it teaches you to sit in the driver’s seat of your life, not in the passenger’s one.
I am lucky she is my friend. You’re lucky that she writes so well and has shared her stories.  Alise Avota, Latvia