This is my story and I am sticking to it !








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 Ultreia Books

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, will be 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.

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