moments of victory

This appeared on the Davis Phinney Foundation FaceBook page today.

Moments of Victory® – Carol Clupny Doesn’t Let Parkinson’s Slow Her Down
Living Well, Moments of Victory
March 16, 2019
What has your journey been like since your Parkinson’s diagnosis?
After being diagnosed in 2008, I continued to work as a Speech-Language Pathologist. When I retired at age 52, I took to the road, literally. In the following years, I walked over 1000 miles on ancient pilgrimage trails in France and Spain. My husband, Charlie, and I started cycling and pedaled three times on the Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI) with the Davis Phinney/Pedaling for Parkinson’s team.
Deep Brain Stimulation and major back surgery in 2016 provided amazing changes in my physical and mental skills. I wrote a book about some of my adventures which will be released in mid-March 2019. The completion of The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease was certainly a victory for me.
How do you live well each day?
Both my dad and my grandpa lived until they were 94. That’s a lot of years for me to live well. Recovering from back surgery and writing the book kept me off my feet for a while. Now I am recommitted to my health. Good nutrition and exercise are priorities. I approach each challenge with a positive view; never saying “I can’t” but rather “How can I do this”?
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
When I was first diagnosed, I wasted time being discouraged about my future. I wish I would have had a glimpse ahead to see how well I would live. So much good has come into my life in the way of friends, opportunities and adventures that may not have occurred if I had not received a diagnosis of Parkinson’s.
CAROL CLUPNY’S PHILOSOPHY
What do you wish everyone living with Parkinson’s knew about living well?
“The more you move the better you feel.” “You are what you eat.” “Attitude is everything.” “Love yourself.” “You are going to be okay.”
We hear these phrases so often in our lives that we take their truth for granted. Actually, they hold the keys to living well with Parkinson’s. Exercise, nutrition, a positive outlook, loving the body you are in and knowing in your heart that everything will work out are keys to living well.

Published by Carol Clupny, author The Ribbon of Road Ahead: One Woman's Remarkable Journey with Parkinson's Disease

I am a middle aged woman with Parkinson's Disease. When I was first diagnosed I spent a lot of time researching the disease. Seeing a video of a man in the advanced stages of the disease attempting to get out of his chair and then "freezing" as he tried to walk across the room got me off my butt and moving. Great adventures on the Camino de Santiago and with TEAM Pedaling for Parkinson's across IOWA, as well as the day to day adventures of life have lead me to writing. My first novel, a memoir, was published early 2019. It is called, you got it THE RIBBON OF ROAD AHEAD. Living with the degenerative neurological disease Parkinson's, ULTREIA is a word that guides me. I have chosen it as the name of my business ULTREIA BOOKS. It comes from Latin and old French and means "unfailing courage". In the old days, pilgrims would call "Ultreïa" to each other as encouragement "Go up, go further!" Nowadays we would say "You can do this thing". It takes courage to live with Parkinson's. May I face each day with unfailing courage. Ab Here is more about me; I was living an active lifestyle riding horses, hiking, climbing and snow skiing when at age fifty she was diagnosed with Parkinsons. Retiring from her career as a speech-language pathologist she decided to “take to the road” to battle the disease. Her first steps, walking out her door to the mailbox, lead to trekking over 1000 miles of pilgrimage trails on the Camino de Santiago in France and Spain. A dusty bike discovered in the garage resulted in four rides on the Des Moines Register’s Annual Great Bike Ride Across Iowa with the Pedaling for Parkinsons Team. These adventures inspired her to write a memoir The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease. Carol blogs about her everyday life as a middle-aged woman in the mid-stages of Parkinson’s disease. Her honest, humorous and casual narrative style brings the reader to an intimate understanding of Carol’s resilience and acceptance. Her blog, sharing the name of her book ”The Ribbon of Road Ahead” can be found at www.ultreiablog.org After completing a Masters of Science in Speech Pathology from Eastern Washington University Carol received certification in School Leadership and Administration from Lewis and Clark College. She provided speech pathology services and was a program director for 32 years in the wide geographic expanse of eastern Oregon. Active in the Oregon Speech-Language and Hearing Association she received honors of the association and the presidential award for her work on recruitment and retention of speech and hearing professionals. Carol presented numerous papers and projects at local, state and regional professional conferences. She was appointed by Governor Ted Kulongoski to two terms of the Oregon Board of Examiners of Speech Pathology and Audiology, the state’s licencing and consumer protection agency. Since her diagnosis in 2008, Carol has become active in the Parkinson’s Community as an advocate, an Ambassador for the Davis Phinney Foundation and support group facilitator for Parkinson's Resources of Oregon. She was appointed the regional patient representative for the Parkinson's Foundation’s Women with PD TALK study. In September of 2019 the Michael J Fox Foundation selected Carol to participate in the Parkinson’s Policy Forum in Washington DC. As an attendee at the World Parkinson Congress in 2016 in Portand, Oregon, Carol presnted a poster session examining the decision making process for patients considering deep brain stimulaiton. At the 2019 WPC in Kyoto, Japan she presented a poster on vision concerns of women with PD and lead small group discussions. Her book The Ribbon of Road Ahead has provided many speaking opportunities for Carol. In 2019 and early 2020 she visited 24 support groups in Washington, Idaho, Oregon and California to share her thoughts on living well with the disease. In addition, she has presented talks for The Center on Aging in San Francisco, Parkinson's Place in Las Vegas, Northwest Parkinson's Foundation in Richland WA and virtually through their HOPE online program. In late 2020 she rejuvenated her voice and narrated her book. It became available as an audio book in 2021. As part of this project she read stories over the airwaves on RadioParkies Australia with DJ Madonna and in Great Britain with DJ Johnny Parky. She and her husband Charlie have two adult sons. They live on a small hobby farm in eastern Oregon. Contact Information: Carol Clupny PO BOX 128, Hermiston, OR 97838 caclupny@gmail.com (541) 720-4256

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