Suggestion # ! If you can, find an established path…

How to Hike on Spree…Suggestion number 1

If you can, choose an established path

Scree fields can be pretty slippery to cross  The rock and soil are loose so a wrong step can send you for a slide.  If you want to maintain or gain elevation, you don’t want to go sliding down the slope.

An established path means others have taken this route before you.  This is a good sign.   There is some sense of relief knowing previous hikers made it to the other side.

The neurosurgeon who will oversee my DBS has done over 1000 of these implants.  He developed a mapping technique using imaging so accurate the patient does  not need to remain awake during the surgery.   The neurosurgeon will be walking on the established path, his path.

Before this surgery I am to undergo several evaluations.  I think they will test my balance for walking  (no stumbling on the scree fields) and my communication skills in case I need to relate my experiences to fellow human beings.  At any given moment I can speak complete gibberish, dontcha know it.  For example  yesterday I returned from lunch and an outing with my friends  Anne and Jill.  Exhausted, I reclined on the chaise lounge in our office room. Trying to tell my husband what I did all afternoon was impossible. It seemed like I could say syllables starting with the “M” sound and that was all.  It was as if I was talking in my sleep or imagining I was talking.  Before too long the husband threw a blanket over me and turned out the light.

Tiredness is only one of my physical characteristics of Parkinson’s;  slow gate,  diminished arm swing on the right,  tremors primarily right side  but sometimes on the  left arm or leg, very stiff glute muscles and hamstrings so tight that trying to stand up straight I can fall backward to name a few of my symptoms.

Lets get started on the precursors to the big event: DBS surgery February or March 2016

The Agenda for Monday December 14, 2016  OHSU Center for Health and Healing
Speech Therapy evaluation 3rd floor ENT 10am
Physical Therapy evaluation 11:30

ps  The last few days I have been in alot of pain.  My gluts and hamstrings just would not give it up for relaxation.  Today I knew I was going to walk with Ellen at 3:45 .  I took 3 tylenol and on the second mile my walking speed increased quite nicely.  So tonight I did all sorts of house work which usually would make me even more sore and stiff.  Instead I have no pain or tremors but very significant dyskenesia. Yikes!  

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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