how writing a book can change your life, or what I learned from the road trip

I have never been one for fanfare.  I would rather be acknowledged for my hard work in the everyday world than to be put in the limelight.   The readings at church yesterday stated, “don’t hide your light under a bushel”.  I don’t want to hide just my light, I want to hide all of me under that bushel.

Writing, publishing and promoting a book has thrust me into the open. The first book talks were basically for the book.  I talked about how I came to write it, how I found someone to edit, the specifics of design I considered to make it easy to hold and read. Reading a few of my favorite stories made the crowd laugh.  Since I wasn’t facing a whole group of people with Parkinson’s masked faces, I got positive feedback from the smiles and head nods.  I made jokes about what GOOGLE said about Book Launch parties and I made sure there was plenty of food and drink. I was speaking primarily to people who knew little to nothing about the disease.  I “normalized” the events to fit “them”.  It is said that a good speaker knows her audience.  I did.  I gave them what they needed.  I now wonder how different those first gatherings had been if I had let them see inside my Parkinson’s.

Who would read my book.  Friends, yes.  People with Parkinson’s, yes. Some Camino lovers, yes.  But get this: The first on-line order was from the executive director of the drum and bugle corps our oldest son Loren marched with during his young adult years.  I would have never in my life guessed that.   A very knowledgeable and well read person in the Parkinson’s community read it and  commented “I  have read a lot of Parkinson’s memoirs and yours is by far the best”. Again, I would have never anticipated  hearing that from this individual.  The president of a local school board got a hold of a copy, read it in a day and wrote a lovely response.  I now know I don’t need to worry about WHO will read my book.  Rather I need to make it more available to be read.

We just returned from a 4000+ mile road trip which included 12 speaking engagements.  These events were primarily focused on people with Parkinson’s.  They were well educated people with Parkinson’s as they had heard every doctor and every specialist in their area speak to them.  What they had not heard was the thoughts from one of their own.  I put away my big slide slow, added a fun movement break, tied in stories from the book and talked about tough stuff that the outside world does not see.  And then I urged them all to develop an attitude of adventure.

I observed, I listened. I met people who were really challenged by the disease.  There were folks who felt very lonely. Partners had left on account of the disease. Some were saddened because the doctors told them not to ride their bike anymore. Others were inspired by their exercise classes.  Some were single parents of young kids and worried about them.  We talked about medication, and off times and falling and DBS.  But the themes  of depression and apathy, seeing the pain and frustration and loneliness behind the masked faces.  This made me pause.  

 I hear how the book and my talk inspire,  how I inspire people to get up and move. What I don’t get is how.  I mean, why are they inspired by me?  I feel like an average person.  

That may just be it.  Quiet, peace filled, unassuming Carol Taking care of myself so I can get out and have adventures, and showing others they can have adventures also.

I dont think I am finished with this topic.  Good smells are coming from the kitchen though and my stomach is rumbling in response.

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

2 thoughts on “how writing a book can change your life, or what I learned from the road trip

  1. 🚘 The “quiet, peace filled, unassuming Carol” allows God’s spirit to flow through her to touch the hearts, minds, and souls of so many people!
    Awesome! You inspire me more than anyone I know!

    Marilyn

  2. Carol,

    I’m not unaware of the challenges that Parkinson’s symptoms bring. In many ways, they steal the dexterity and mobility that brings function and joy to life.

    What is inspiring about “quiet, unassuming” Carol is that those potentially devastating changes in you’re life did not inspire you to give up. They inspired you to keep learning, keep trying, keep moving and then to share what did and did not work with others.

    Well done,

    John

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