Write your Story

The Ribbon of Road Ahead gave me the opportunity to compile stories of events and the lessons I learned from the events. There are many many, and I will say it again, many more stories I could share about events in the same time period. When I recorded the book in the studio, many of the unpublished stories came back to me. There was something about hearing myself in the headphones that made words come alive. I could see the characters move and hear them speak. I smelled the spray coming from the huge tractor-trailer rigs in the vinyards, and the rough feel of the heavy wool blankets in the albergues in Spain.

I have been told that my book has inspired people with Parkinson’s disease to get up and move. To think that my words gave someone hope has been is unimaginable to me, but true I ‘spose.
So if you have a story in you that needs to get out, put it on paper. I know that takes alot of courage. Sometimes it means you “out” your self from something you have hidden for awhile.

In The Voyage of the Dawn Treader, third book in the series the Chronicles of Narnia by CS Lewis, the character Eustace goes through a spiritual transformation. But first he must embrace the truth of his own brokeness.

After my diagnosis with Parkinsons, it took awhile to get over the shock and accept that this disease was not going away. It wasn’t until I accepted that I was a damaged diseased person, that I could get on with life.

It was in “this truth” that I embraced that I came to a new understanding. And I was able to help others.

“Your story could be the key that unlocks someone elses prison. Dont be afraid to share it.

We learn lessons in our storytelling. And, like the quote, our stories might be just what another person needs to unlock their prison.

So, Tell your stories

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 I was diagnosed with Parkinsons. Retiring from my career as a speech-language pathologist I decided to “take to the road” to battle the disease. My 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 me to write a memoir The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease. I blogs about my everyday life as a middle-aged woman in the mid-stages of Parkinson’s disease. My honest, humorous, and casual narrative style brings the reader to an intimate understanding of my resilience and acceptance. My blog, sharing the name of my 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 I received certification in School Leadership and Administration from Lewis and Clark College. I provided speech pathology services and later became a program director completing 32 years in the wide geographic expanse of eastern Oregon. Active in the Oregon Speech-Language and Hearing Association I received honors of the association and the presidential award for work on recruitment and retention of speech and hearing professionals. Il presented numerous papers and projects at local, state and regional professional conferences. I was appointed by Governor Ted Kulongoski to two terms of the Oregon Board of Examiners of Speech Pathology and Audiology, the state’s licensing and consumer protection agency. Since my diagnosis in 2008, I 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. I 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 me to participate in the Parkinson’s Policy Forum in Washington DC. As an attendee at the World Parkinson Congress in 2016 in Portand, Oregon, I presnted a poster session examining the decision making process for patients considering deep brain stimulation. At the 2019 WPC in Kyoto, Japan I presented a poster on vision concerns of women with PD and lead small group discussions. Myr 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 I rejuvenated her voice and narrated her book. It became available as an audio book in 2021. As part of this project I 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

3 thoughts on “Write your Story

  1. You are such a inspiring person and make me feel that i could do more than i try, but then when i try things happen that i don’t want. take lastnight for instance, i was sitting on the edge of the bed trying to get my shoes off and get into my jammies when all of a sudden i found myself sitting on the floor and i could not get up no matter how hard i tried, with my bad knees i can’t get on them at all. finally after quite awhile i yelled loudly for my husband, he came in and tried to help me up but we just couldn’t do it. (he has cancer) so i said give me my phone and i called our oldest daughter here in town, it was going on 9 PM and i hated to bother her, but she and her son who is in is 20″s came up and got me up in no time. I am a little bruised today and sore but no broken bones. This darn Parkinson’s just likes to get me down every once in awhile. I sometimes don’t feel that i have a very good attitude about Parkinson’s but i at least try. I know you are really active Carol and you don’t seem to let it get you down. God Bless you. and Happy New Year.

  2. Caro every since the Covid 19 virus hit which is coming up on a year, i have felt like i was living a different time one than before. It seems that it is much harder to live with Parkinsons an really puts me in a down mood, I am sure i am not the only one that feels that way, when i read your stories its like turning on a light and you open my eyes to what is really going on, you have a wonderful outlook on life. thanks for sharing with all of us.

Please comment. I love to hear your thoughts!

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: