I have learned many lessons since  being diagnosed with Parkinson’s.  One of these lessons was taught to me by my friend Nan Little.  We were discussing her climb of Kilimanjaro and I brought up my desire to do some similar fete with a group comprised of individuals with the same diagnosis.   Nan shared this wise comment  “Do you really want your whole life to be about Parkinsons?”   Her statement caused me to pause.  

So with that explanation, I share this piece I wrote two years ago at the beginning of the Advent season, a time when Christians prepare for the coming of Jesus at Christmas.  

(hint…its not about Parkinsons)


Scissors Nov. 27, 2017
4-H horsemanship was a wonderful experience in my life. My parents were not “horsey” people, so I relied on my 4-H leaders and neighborhood “horse people” for guidance in preparing for shows.

A big bay quarterhorse-thoroughbred mare, Shauna Alate, became my companion, best friend and confidant to see me through my tumultuous teenage years. I met her through a trainer who lived a short distance from our family home in Walla Walla, and purchased her, boarding her there for free in exchange for feeding and exercising horses. Shauna would do anything for me, as I would for her.

Shauna somehow got me to the grand championship round of the 4-H Fitting and Showing contest at the Southeastern Washington State fair. We didn’t win, but for me to show her at that level was about the coolest thing I had done horse-wise up to that time in my life.

During the training I received from 4-H, I learned that using a clippers or scissors on a horse was determined on the breed type and could be necessary to prepare a horse for show, but never was to be used a replacement for good grooming.

I thought about this a lot yesterday as I was checking over my horses, and combing out their wind twisted manes and tails. CJ had a big knot in her mane. I tried several different techniques to get the knot untangled, and then I took the easy way out. I got the scissors and cut it. Immediately I heard a voice say “scissors should never be used in place of good grooming”.

What complicated lives we lead. I know my life consists of so many tangles and twists and turns. Big knots develop. It hit me hard: follow the practice of keeping things straight, of keeping up the practice of “grooming”, the discipline of working on friendships, relationships, marriage, my personal faith journey, my weight, my level of fitness. The world that surrounds me now is so much different than my 4-H world of the 1960’s and 70’s. This world tells me if I don’t like the political affiliations of my friends, I unfriend them on Facebook. If there is an unwanted pregnancy the unborn person’s life can be terminated. A relationship with a once dear friend is lost in unanswered calls and texts. The bonds of marriage can be cut with a divorce decree. Adult children become estranged from the family.

Taking scissors to Shauna my 4-H horse was out of the question. I spent hours and hours with her, building trust and confidence, brushing her and working on her mane and tail. It was so worth the “grooming” to be able to enter that “championship round”.

The message here should be obvious. It was obvious to me. “Work” on it Carol. If people are important to you don’t cut them out of your life because of twists or turns or big tangles or rats nests. Use technology to contact them, but then put the technology away and look into their eyes as you speak in person. Work on that good marriage you have by uplifting your partner, communicating clearly, getting outside help if needed. Talk with those adult kids often, it’s so easy to forget them when they are far away…geographically or in mind and spirit.

Although I felt awful for getting the scissors out, CJ’s mane did not look too bad after I cut the knot. Yes it took some hard work to repair, hand pulling the mane around the big knot to even the hair length. I brushed her for quite some time. I checked her hooves and ran my hand over her entire body looking for wounds or sores or bumps. I talked and sang to her.

“Scissors” should never be used in place of “good grooming”.

This advent I will think about and act upon this thought.

Prepare ye the way of the Lord.

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 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 (541) 720-4256

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