One Woman's Remarkable Journey with Parkinson's Disease by CAROL CLUPNY
Growing up on Berney Drive in Walla Walla I learned a lot about fences. The man who built our house, Ralph Bramlet, brought a load of lodge pole from his land in Dixie, Idaho. I was given the job of peeling bark and painting a sealant and holding the poles while we built the lodge pole corral at my folk’s house. Over my backyard fence, pastured by the lodge poles was a big Quarter Horse Thoroughbred cross named Shawna Alate. She was my first backyard fence connection. We spent all of my free time together.
The fence around the house was woven cedar boards. My mom stained it red. Every few years she would don old clothes and a shower cap to protect her hair and paint. I was supposed to help but ended up spilling a lot of expensive stain. What did I care. For me, it was fun to go to Van Patten’s Lumberyard to purchase more stain. I had a haircut just like the little kid on the Dutchboy paint can. I pretended it was me.
On the other side of Shawna’s pasture was the Fazzari’s. They had a short white fence so I had to keep a hot wire up so Shawna would not eat the petunias growing along the their fenceline. I played a lot with the two younger boys, Greg and Rod. As we grew up, all four boys and their mom Marie worked at my parents’s drive-in, the Ice Burg.
Greg and I developed this saying:
“Meet you at the fence at midnight”
“I’ll bring the wine”
“I’ll bring the glasses”
And once, after high school, we actually met at the fence at midnight.
No one believes I was a rascally kid, but I was. There are lots of stories about me sneaking into the school on weekends and even one about me escaping out the second floor drama room window and breaking the fall on the awning over the door of the Ala Room and falling into the flower bed…but believe what you will..this next story is true.
My friend in shenanigans was none other than Dawn Adams. Imagine that. We loved sneeking around. I think it started at 4-H camp. One night I snuck over the backyard fences of all the neighbors on one side of her street. She watched. I was good! No one switched on lights. Only a few dogs barked. I thought I had a great future ahead as a climber of fences. But I was told to keep my day job.
Walking along the French way of the Camino de Santiago in Spain, there were many types of fences. We also met animals that roamed without any fences. A few fences come to my mind…and these thoughts have nothing to do with shenanigans, Dutch boy paint or meeting at the fence at midnight.These fences brought special meaning to the walk.
It was another spectacular day on the Camino. We left Astorga as soon as we could see the yellow arrows painted on pavement, signs and curbs to guide us out of the city. I have walked this way before and I remembered these places..
We passed the modern church and wondered why the woman holding the chalice and host in one hand is blindfolded. We visited the small road side chapel and well of “living water” where the drowning boy was saved by his mother’s pleas to Jesus. We walked across the countryside and farm land and into the rolling hills and then into the mountains. I walked quietly. I listened to the stories around me, the stories of heartaches, infidelity, abuse, alcoholism, divorce, addictions, loss of children and parents and siblings…I carried all this for awhile until I could listen no more and I pushed ahead by myself. I entered an oak forest. A fence ran alongside the trail. Woven into the fence were crosses….big and little. I wanted to place my own cross there, but there were so many crosses there was no room to add new ones. I wanted to build a new fence so I could make more crosses. With no materials available I hung the sorrows I heard on the crosses that were already there. Then I thought of all of my friends at home who have followed my journey with Parkinson’s. I said their (your) names and saw their (your) faces and hung their (your) sorrows on those crosses.
As the trail joined the highway I said goodbye to the sorrows. It was good to leave all the pain behind. Out in the sunshine now I turned my thoughts to the joys and celebrations and births and graduations and anniversaries. I thought of how much I love Charlie and Luke and Loren and Maryhelen and Laura and her beautiful Mariska and how much I miss my dad and my mom. I was sobbing in joy and relief when I walked into Rabinal with Karen. Janet and Mary Jo and Deb and other friends I met along the way were there to greet me. It was a most amazing day. I wrote on the Facebook note “I am spent and full and empty all at once.”
Fences keep things in. Fences keep things out. But not me. I can climb over.
Author: 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 firstname.lastname@example.org
View all posts by Carol Clupny, author The Ribbon of Road Ahead: One Woman's Remarkable Journey with Parkinson's Disease