The Ribbon of Road Ahead: One Woman's Remarkable Journey with Parkinson's DIsease

by Carol Clupny

At forty-nine years old, Carol Clupny was an active, driven woman with a career, a family and a zest for adventure. A mere year later she struggles with strange symptoms of internal tremors, frozen shoulders, and a serious intestinal infection. She doesn’t understand why she can’t paddle a kayak or throw the ball for her dogs. Then comes the early onset Parkinson’s Disease. “How can I keep going?” she asks her doctor. “Keep exercising and taking your meds. You have five to ten years before things get more difficult.”Carol finds she can no longer work. From her easy chair, she watches videos of people in advanced stages of Parkinson’s. “I can’t go there,” she tells herself. Struggling out of her chair she shuffles outside to the mailbox and back. These first steps begin her training for the trip at the top of her bucket a pilgrimage on the Camino de Santiago in Spain. Completing this adventure once is not enough, she returns again and again. She reads in an article that bicycling helps mitigate the symptoms of Parkinson’s disease. Dusting off a seldom used bike in her garage, she leans it against the mailbox to mount up. Away she goes with new-found freedom to train for the RAGBRAI (the Des Moines Registers Annual Bike Ride Across Iowa.)On her trips, Carol faces challenges she never could have foreseen. She forges lasting friendships and confronts the reality of living with a progressive neurological disorder. Crashing her bike, slipping along muddy paths with a heavy backpack, suffering through blisters and tendonitis, using a field as a bathroom she approaches every aspect of life with an attitude of adventure. Carol is not afraid to face the apathy and depression that come with Parkinson’s. Instead of being drug down into darkness, she finds strategies for lifting herself, and others around her, up into the light. After eight years on medication, Carol's doctor suggests deep brain stimulation, not a cure for Parkinson’s but a procedure to control her symptoms. In preparation for this brain surgery, her sense of humor is revealed. She banters with the lead nurse about shaving her hair and lectures the surgical staff to “do your best job”. Playing catch with strangers at a bluegrass music festival and talking her husband into a late-night horse ride demonstrate just some of the positive outcomes as her body recovers lost skills. This book is a story of resilience, strength, and a belief in oneself. It is a beautiful read. Claude Tranchant, author of Boots to Bliss

309 pages, Kindle Edition

Published March 15, 2019

About the author

Carol Clupny grew up riding horses, climbing trees and tubing down the creek. The fish would not stay off her line nor the tales off her lips as her love of outdoor adventures grew. It came as a blow when at age fifty she was diagnosed with Parkinson’s Disease. Retired from her career as a speech-language pathologist she quickly became fed-up with sitting in a recliner and feeling sorry for herself. She decided to travel but needed to get her diseased body moving. Her first steps, walking out her door to the mailbox, lead to treading the pilgrimage trails of the Camino de Santiago in France and Spain. A dusty bike discovered in the garage resulted in three rides on the Des Moines Register’s Annual Great Bike Ride Across Iowa.

Carol is active in the Parkinson’s Community as an ambassador for the Davis Phinney Foundation, an advocate for people with the disease and support group facilitator. She and her husband Charlie have raised two boys, two horses, numerous dogs and cats, and calves on their small acreage in Hermiston, Oregon.

Reviews

[Kerry Browman]

I have been diagnosed with Parkinson's disease since 2010, by the VA. I found that none of the current medications worked (side effects for me). I currently take pramipexole dihydrochloride three times daily. It isn’t working well neither. I still have some tremors. Was on carbidopa levodopa but only lasted 90 minutes then wore off. Down side of carbidopa is after reaching max dosage it will no longer give relief, nothing was working for me and to make matters worse there has been little if any progress in finding a reliable medical treatment for Parkinson's disease without spending thousands of $, finally this year I was introduced to Health Herbs Clinic and their effective Parkinson’s herbal protocol. This protocol relieved symptoms significantly, even better than the medications I was given.. No case of Parkinson’s, hallucination, weakness, muscle pain or tremors. I’m strong again and able to go about daily activities. Visit Health Herbs Clinic website healthherbsclinic .com

[Julie Fitzgerald]

Carol is an incredible writer and storyteller. I haven’t put the book down since I started. I’m savoring every word of her courageous journey. She tackles unbelievable physical feats with grace and humor and makes you feel like you are on the road walking beside her. BUY HER BOOK. It’s a must read for anyone especially if you have Parkinson’s or love stories of triumph over insurmountable odds. ❤️

[Ken]

Carol Clupny's wonderfully written memoir is filled with inspiration, grit, and resilience. Being the partner of someone recently diagnosed with Parkinson's Disease (PD), her story helped me to better understand what my PD partner is going through, and what we may expect in our future. Our live's don't stop with a PD diagnosis! I recommend this book to anyone recently diagnosed with PD, knows someone with PD, or is a partner of someone with PD.

[Wilma Dotson]

Books that are in some way medical are ones I always enjoy! The story of Carol's journey with Parkinson's disease will help me to be more empathetic to people who I personally know who are living with the same disease. The correlation between physical exercise and lessening the PD symptoms is fascinating. Want to look more into that.

[Kym]

I highly recommend this book. She is proof that you don’t have to stop living because you have Parkinson’s. 💜

[māris šteinbergs]

iedvesmojoši un paliekoši

[Alise Avota]

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.