Countdown to DBS 15 days to go

Today I overheard my husband tell a friend  that I am anxious and nervous about the DBS surgery only 15 days away.      I wish I could say I was anxious, nervous, excited or scared…or any emotional feeling at all.       Actually I only feel physical sensations.  Tremoring hands, inner tremors throughout my body, extreme stiffness and tightness and the pain that goes with it and a sore hip.  At this moment in time its difficult to stand up straight and I am going to regret getting in bed because there is just no comfortable position. Will I feel joy, relief, or happiness or any emotion after the surgery? Will it be a change in the physical sensations with no emotional counterpart?

My life amazes me.  Is it OK to be amazed by yourself?  I think so!!!

This afternoon I spent quality time with Nan Little, who we brought to our community as a speaker about Parkinson’s Disease and her new book.  If she had not been diagnosed with Parkinson’s Disease would she have climbed Kilimanjaro, trekked to Ana Purna Base Camp, visited Machu Pichu, cycled across IOWA 5 times, hiked, skied, kayaked?  Would she have met me?

Where did this PD journey take me?  If I had not been diagnosed would I still be working?  Would I have made 5 trips to Europe, three which were long distance walking treks.  Would I have cycled across Iowa, not once but twice in the middle of summer, or logged hundreds of miles at home training.  Would I have taken up Tai Chi, started to Kayak, put a punching bag up in my garage? Would I have met all of these kind and wonderful and smart people who are my friends and health care providers.  Would I have met Nan Little if I  had not been diagnosed with Parkinson’s Disease?

The physical sensations I feel from PD are annoying.  Yet I can live  with them. Its a  choice to take my meds, to eat reasonably and exercise hard. Its just as possible to ride across Iowa with PD as it is to stay home with PD. I decide  how much I want to put into fighting the symptoms.

The big stormy rain cloud does hide a silver lining. I am amazed at what  I have accomplished.  I am amazed at what my friend NAN LITTLE has accomplished.  Its in the choice.

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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