PLEASE DO NOT FEED THE…

What is your first impression upon reading this sign?
What “fears” do you have?
Don’t tell me you are afraid of spiders.
That’s not what I am talking about.
 My recent announcement of the possibility of  DBS surgery occurring in the near future has brought on many inquiries as to my level of fear.  There should be a “fear schedule” not unlike the “pain scale” at the doctors office.  The FEAR schedule would be  based on a emotional and physiological state.  When we arrive the med tech taking our vital signs would say “Rate your fear today on a  scale of 1-10, with 1 being  there are no physiological manifestations to 10 where you are so scared you might just pee your panties.”  I would tell the Dr’s office folks that I am not a 10 in fear and they would be most happy they don’t have to call  building maintenance for a “clean up in exam rm 4”.    
Two years ago we planned to do some long distance bicycling riding.  Most everyone I spoke “tospotry abpout a bike wreck, if sine ibe”   
I saved the above line because Charlie watched me type it in  my sleep.  Not too bad huh?  
Now I am awake, lets try this again.   Most everyone I spoke with about the rides we planned to do made comments about the dangers of bicycling.  Everyone had a story of someone getting injured or worse on a  bike.  I needed to have the sign nearby to let others know that I don’t want or need to hear those stories.  Distance cycling when you have a degenerative neurological disease can be scary enough without visions of bicycle spokes spewed across the highway.
The mention of Deep Brain Stimulation Therapy seems  to bring up fears in all the people who ARE NOT going to experience it. There have been more comments if “how scary” than I can count. I could  not be more excited about this procedure. !  The idea of improving my mobility is so awesome!  My fascination with all things medical both helps and frustrates me.  I would love to be in the gallery at the surgical suite to ask questions as they came up.  But I really think the surgical team will do a great job without interruptions from me.  
Out walking this dreary afternoon I told Ellen about the DBS procedure.  Her response  “Cool!”.

Perfect Ellen.  You followed the directions on the sign. 

  Acknowledge, comment, agree with, encourage. 

Just please help me out.

Don’t feed the fears.



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

One thought on “PLEASE DO NOT FEED THE…

  1. I'm so glad you are sharing this journey with us. I. too, think it is exciting and I'd like to think if I were in your position I'd be brave enough to try it. If I ever try to tell you a horror story, just tell me to shut up! Hang in there.

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