The Best Day Ever

In January of 2020, I was preparing for a great road trip. Charlie had our Coachman Crossfit camper van, Dooley, mechanically ready for our journey. I had arranged for 12 speaking engagements along the way and figured out how to get to each location and where we would stay at night. We packed healthy food and a couple bottles of red wine. Two sets of dress up clothes were hung up in the closet, and my baseball caps, Wranglers and sweatshirts in the cupboards. And the gas tank was filled, not with regular, but with super premium.

Ready to go, we waved goodbye to house and dog and said a prayer of protection for our travels. Charlie drove the van out onto the paved lane that goes by our house and shut the gate behind us. Ready? Really? Physically maybe. I was unsure about the speaking part. I prepared a bunch of slides to illustrate my talk. The content had been written out over and over again and finalized in size 20 bold font in a small three ring binder. I knew after an impromptu presentation to two ladies in the knitting club who were kind enough to stay and hear me talk at the bookstore in tiny Haines, Oregon what needed to happen. They were genuinely interested in me, a stranger who pulled into their town in a shiny new van . The slides and that fancy stuff were not necessary. And because of this first unplanned experience in telling my story, I started to think about speaking events differently. By the last presentation a month later, I got it down to just a smattering of slides and one great dance song. And I talked about me.

I talked about apathy and depression. I hoped to inspire my audiences to turn these challenging symptoms of Parkinson’s into tiny little adventures to be completed one by one, starting as small as changing chairs, or stepping outside the door; anything that the individual chose to do and the Parkinson’s didn’t. The control of mind and body over Parkinsons could then grow into larger tasks and accomplishments. After giving examples of how we people with Parkinson could “take a bad hand of cards and play them well” and turn “every challenge into an adventure”, I concluded by wishing them the “best day of their life”…and that every day could be the best day of their life…so far.

I have definitely had some of the best days of my life so far during this pandemic. Dooley has taken Charlie and I on 3 more road trips and we have met people and been to places I only knew virtually. I have written and drawn and played music and rode my trike in the mountains, at the beach and in the forest.

I have also had some rough days, but they have not been the worst days of my life. These downer days have come from loss. We could write pages and pages of what was lost during the pandemic. what has me thinking this day is the loss of people. We lost Charlies sister, Cece in March. Four friends who had been battling Parkinsons have passed away. Two friends died with Covid-19. And we didn’t really get to properly say goodbye to any of them.

But then yesterday Susan called to tell me that Mick was gone. Suddenly, loss was no longer acceptable. With Susan at his side, Mick had fought Parkinsons as well as other health problems. He was diagnosed around the same time I was. Why am I still here?

Is it because I am given more time, more opportunities to have that “best day ever”

A great need has arisen in me. Bet you can’t guess . That is to practice what I preached during those talks last year.

Have the best day ever.

What does it mean to me. It means to do my best. To give my best. Not being sucked up by apathy and blame my lack of action (or motion) on that. I will work against that cement that surrounds my feet as I try to walk in the morning. I will work on balance so I can stand up tall. I will work on breathing and speech. I will work on getting out of a chair, out of the car, up off the floor. I will climb the stairs, fold the laundry, do the dishes, cook some meals. These activities of daily living are what I can do keep myself active and my care partner less burdened.

Each day will be better than the last. That will make today the best.

The best day ever…so far.

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

10 thoughts on “The Best Day Ever

  1. Another great post, Carol you are a great inspiration to all of us who have Parkinson’s, always look forward to reading what your write. can’t wait until our support groups can get started again.

  2. Hi Carol….
    I’m happy to hear you both are doing well. Yes..staying busy is key for my husband. Everyday I leave a “honey-do” list of simple things such as filling the bird feeders, maybe vacuuming, etc…it makes him feel good and useful. He takes the dog for a walk when he can, otherwise, he takes a walk by himself. Thank you for your inspiration and words of wisdom 🙏

  3. Love your inspirational messages! Worrying never helps any of us! Boldly and happily we set our course to be happy, give our best! Love j

  4. Carol this is a great article filled with love and dreams and hopes. I like how you can pull yourself up by the bootstraps so to speak and carry on. Keep up the good work.

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