Why I write. Jan 29 16

Why I write . Feeling anxious, agitated and not at all my usual self so sending the husband safely away while I take it out on PLASTIC!  Away you go ZipLock. I am GLAD to toss toss toss. Where did I get 6 sets of measuring cups and so many misc. measuring spoons.  And three sets of silverware in two drawers? No more!  Next the linen drawers and the duplicate kitchen utensils.  Mom’s.   Dad’s. The Ice Burg’s ( ok I will keep the great onion slicing knife, hamburger turner and mayo/relish spatulas) PS the house is going too(actually it’s staying and we are going) so if anyone wants  a nice big house with a huge shop on an acre personal message me.

I know you all think I am on a cleaning spree.  That I am.   Yet if we look past my sock drawer and the kitchen cupboards, there is more to learn about what is going on.  People with Parkinson’s Disease have a multitude of symptoms.  In a way it should be called Parkinson’s Cafeteria Syndrome.  (Everything is Parkinson’s but you may get a little of this and a lot of that served up on your plate and you don’t really have a choice). Most recently the symptoms have been tight rigid muscles accompanied by constant pain, topped with a smattering of restless leg syndrome and last night, Mr Parkinson’s forgot the whipped cream and cherry and topped off my day with a sense of panic and impending doom. Attacking the kitchen was my attempt at avoiding a tranquilizer or alcohol to calm the nerves.  I sent hubby to the movies and turned up the music.  Cleaning therapy worked well this time as by nine o’clock the sorting and packing up was done and my body, mind and soul were at peace.  There are alternatives to medicating oneself and given the chance they might work!
It’s been over 8 years since my diagnosis.  I know now that the disease was active in me long before that. When I asked God “what am I supposed to do with this?”  The answer came back “Do some good”.  How the heck can anything about this slowly progressing neurodegenerative disease be good. Then it came to me that I could share my life as a Person With Parkinson’s with all of you. And that by my adventures in travel and my poking fun at everyday life,by my sharing my struggles and accomplishments, by revealing my hopes and dreams. …  You can see beyond your own personal, physical and emotional challenges.  There is good in this world. There is hope. And comfort  really can be found on a Friday Night in Hermiston Oregon in my very own kitchen matching plastic containers and lids.   
In a nutshell that’s why I write about my life. Just trying to “Do some good”.  May you never have to visit a cafeteria where life gets “served up”. Go down the street until you see “Buffet”. You can “choose” there.

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

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