This is my story and I am sticking to it !

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THIS IS TAKEN FROM MY FIRSTGIVING FUNDRAISING PAGE. THANKS SO MUCH TO ALL OF YOU WHO DONATED TO THE PARKINSON’S CENTER OF OREGON ON MY BEHALF.  ANY ONE WHO WOULD LIKE TO ADD TO THEIR RESEARCH FUND I AM SO VERY GLAD TO PUT YOU IN TOUCH WITH THE RIGHT PEOPLE!

     

           

 

 

Well friends, its nearing time for me to complete this fundraising effort. Remember the Parkinson’s Center of Oregon is a non for profit entity and your donation is tax deductible. Hope you are able to help me with my goal of $10,000.

HEY…I made it home. I am so pleased to have walked nearly 400 of the 500 miles I planned to complete on foot. I learned alot about dealing with Parkinsons disease during a grueling 32 day walk! But for the most part it was a very good trip.
Thanks to all who have contributed. There have been several off line contributions. We are half way to the GOAL of $10,000. Please donate to the Parkinson;s Center of Oregon!

Thank you for visiting my fundraising page for Parkinson’s research. This page is established as a way for you to donate to research programs at the Parkinson Center of Oregon at Oregon Health and Science University (OHSU) in Portland, OR.
On June 2, 2012 I will embark on a 500 mile walk on the Camino de Santiago in northern Spain with family members and friends. I have given this group of 10 wandering pilgrims the name “C-TEAM.” This is going to be a very difficult journey for me due to my Parkinson’s as we will walk at least 15 miles a day for over 30 days. Yet, to me it is very worthwhile to raise funds for research into a disease that wants to take my mobility away.
This page provides a very simple way for you to donate to Parkinson’s research in my honor. And when you are done…hit the share button at the top and send my page to all your friends and then follow OHSU Parkinson Center of Oregon on Facebook.
The first day this was posted $1000 was donated! Any amount will make a big difference. It all adds up. I hope to reach $10,000 before I return July 17. Please join me in reaching that goal by donating today.
I will be blogging along the way. Watch for further information on how you can get on that blog and read more of my story.
The Story of my diagnosis
The year I turned the corner on the second half century of my life, I noticed more than the usual middle age-ed-ness creeping in. My balance was off, my right arm did not move as well, I experienced “pings” or tiny spasms in my legs.
My husband gave me the most wonderful 50th birthday gift…a three day women’s kayaking adventure in the San Juan Islands. Being somewhat athletic, and enjoying all things outdoorsey, I eagerly awaited the date of the trip. It was a lovely, beautiful trip and yet I had a very difficult time. My paddling partner pulled my weight and hers and on the final leg of the trip one of the guides paddled me back to the pull-out site. Something was going very very wrong with my body.
My family doctor sent me to a kind neurologist, an older gentleman nearing his retirement. As he administered the exam, I could see I was not completing the tasks easily. My mind seemed to know what it was supposed to do, yet it wasn’t coming out right. He said “Here is a prescription for some pills. I don’t want to give you a diagnosis yet. We will know more when you have taken this medication a few weeks.” He walked me to the door, and putting his hand on my shoulder said “You think you have Parkinson’s Disease don’t you? ” I responded “I’ve done my reading”. He replied “If this medication makes you feel better, we will have some answers”.
I went on with life, a mom of two active boys, a wife to Charlie, a Speech Pathologist, a Director of a Speech and Hearing Department, a hiker, climber, backpacker, horsewoman, skier, fisherwoman, traveler and now a wanna-be sea kayaker. It was a brilliant September Saturday morning and I was up early and zipping around the house doing chores and cleaning with a vengeance when I was stopped in my tracks by the thought “CRAP! I feel really good. The medicine is working. That means….”
The kind neurologist sat down with me again. He said “Now you need to get a second opinion. I am going to write a letter to my friend Dr. Jay Nutt at Oregon Health and Science University. He started a clinic there for people with Parkinson’s and it’s the best around. “
It took forever to drive the 190 miles to my appointment there. When I arrived, I got another complete neurological work up by Dr. Amie Peterson. She listened carefully as I tried to recall all the symptoms, watched intently as she put me through the examination and concurred with the diagnosis…young onset Parkinson’s Disease. She sent me to the Occupational Therapist, the Physical Therapist and I had to laugh when I saw one of my own profession, THE SPEECH THERAPIST! All answered my questions and gave good advice.
AND I asked a billion questions, read books and articles, and saw videos of people in advanced stages of the disease and decided I JUST AM NOT GOING TO GO THERE! I have too much living to do.
I took my medicine, joined a Tai-Chi class, decided to learn to play blue grass music on the guitar, shot baskets on the my lunch break, kept my chin up and kept moving.
This story can go on and on…but the most important thing is that I have a chance to give back to a fantastic institution that has provided wonderful care…and pay it forward by raising some money for research so maybe the next 50 year old woman will hear “Yes, you have Parkinson’s Disease and we now HAVE A CURE”.

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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