C minus 17, but who is counting

Getting up off the bedroom floor and looking down at the carpet I see the complete shape of my body. It’s an outline left from my sweat. I would have drowned in that pool if the carpet had not  been there to soak it up!

Just a few minutes before,  I came in from the walk and plopped down on the couch.  Both hands were tremoring.  And I mean TREMORING!  I called to Charlie.  “Come here, you have got to see this!”  He took a look and said “Oh yeah. Look at that.  Remember you have just put a big strain on your body.  It was really hot out there. Cool off and rest”. I managed to remove my boots and socks and stagger a few steps before collapsing on the bedroom floor. The walk was the fastest I’ve walked 5 miles, I am sure of  it.  I didn’t have my backpack on thank goodness!   It was enough to be out in the almost 90° weather walking  on sidewalks, roads and a paved path. I learned from bicycling that  heat  generates up from black top. In addition to the 90° air temperature that makes over  hundred degrees walking. Add to that,  I woke up this morning with a terrific headache. Charlie and I talked about being able to have the discipline to keep moving toward our goals in adverse conditions and today’s walk was a great example of it. I am TOUGH!

About three years ago I joined the pilgrims of the Portlandia chapter of the American Pilgrims on the Camino for one of their Sundays strolls. Even with my trekking poles I was so slow  that I fell way behind the entire group.  Pilgrim Robin had the “sweep up” role on the hike.  She and I visited about our camino experiences as the dust settled from the other pilgrims ahead of us.   I was slow, uncoordinated and in pain.

This past  Sunday my friend  Carol and I joined the Portlandia group for the third Sunday stroll and the “shells ceremony”. This lovely tradition is a  blessing from past pilgrims to the new pilgrims who will be walking the Camino within the next month. Two things were especially meaningful to me as I shared this experience with the 60 plus pilgrims gathered. First,  to be able to walk unassisted with a strong pace near the front of the group while carrying on a conversation amazed me.  For two miles I easily navigated speedy straightaways,  tight switchbacks, traverses up and down  steep creek-bed banks. Wow! I’m sure that no one else  could understand what it meant to me to be able to move with such agility.The ear to ear grin may have been seen yet not questioned.  At first  I held this other picture in my mind, the one of the slow pilgrim disabled by Parkinson’s Disease. This walk greatly diminished that image.
Secondly,  I was touched to receive a blessing from people who have walked before us  and who will be walking with us on the Camino in their hearts.I will carry the new shell for them.

As Charlie and I left the driveway of  our  house this morning I recalled the time  I just started to walk again.  I walked out the front door  to the mailbox and back.  Next time I walked out door, I made it across the street. Then  I made it to the sidewalk and down to the next driveway, out  the corner of the street, to the hospital and back around the hospital and back of the Butte. And before too long I was up and down the Butte three times in a row.

There’s no putting a price tag on these experiences.  There is no measure of  my gratefulness.

Charlie and I talked more about discipline. The discipline to walk when you have a splitting headache. The disciple to walk when recovering from an injury. The disciplie to walk when your body is frozen with Parkinson’s Disease. The discipline to walk even if that means slowly putting 1 foot in front of the other.  Discipline to keep moving. Keep Moving. Keep moving. keep moving. Discipline  and the spirit of determination to fight Parkinson’s as it tries to gain  controll   That’s what keeps us going in life.   You  have to put one foot in front of the other when your heart is broken when your spirit is shattered when you have lost a loved one when your job sucks. Take one little positive action,  one little step at a time, moving forward. Soon the miles are covered, the hardship is overcome and you come to that  place of peace and where you can rest for a while.

 C minus 17 days. The countdown has begun. 

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

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