32 minutes

I remember the first national speech pathology convention I attended. It was sponsored by the American Speech and Hearing Association. I was late arriving at the awards luncheon and found an open seat at a table near the front of the conference room. When I was settled and had a chance to look around I realized I was seated at the dignitary’s table. To my right was the past president of ASHA and next to her was the executive director of the Alexander Graham Bell Association. The current ASHA president was the next person and then there was Nancy McKinley and Carol Westby, two leaders in the field. I realized I had sat where I did not belong and quicky started to gather my things. “No no. Your place is right here,” the woman on the left patted the chair seat to convince me to sit back down. I don’t know who they thought I was, but for a little while, about 32 minutes before they had to get up and address the audience I was right there rubbing elbows with the champions of Speech Patholgy and Audiology.

Charlie and I traveled to Kyoto, Japan last week to attend the World Parkinson’s Congress. There are some well known characters in the Parkinsons Community. In addition to seeing them on YouTube, Facebook, Podcasts and blogs, they are frequently invited to speak at conferences.

[ ] This WPC in Kyoto had its fair share of big names from the Parkinsons community present. One person who caught my attention at the WPC in 2016 was Heather Kennedy. Heather has YOPD, young onset Parkinson’s disease. I met her in the Book Nook at the 2016 WPC in Portland and we had a short disussion about who knows what. But Heather intrigued me enough to watch for her name in the Parkinsons world. To say Heather is a performer is understating her abilities. Educating and advocating about Parkinson’s is her passion. Her intelligence and humor keeps audiences engaged. Throw in a little singing, (maybe Jolene) a bit of dance (videoed at a club or Parkinson’s event) a wink and a shrug and she communicates beyond the need for words.

My fit bit told me I had already put in 6700 steps and I also had met my goal of speaking with four new people that morning. I decided to take a break in a comfy chair. I was just dozing off to sleep when I felt someone near me and a sort of familiar voice saying ” hey, whats up. Are you doing ok?” It was one of those big name people with Parkinsons, it was Heather Kennedy. “I haven’t eaten yet and I have to talk in a little while.” “Lets go find something to eat then” I responded. We were the only ones in the Grill restaurant as our orders were taken. After a debate with the waitress as to if there was grain or dairy (now I knew she suffered with celiac disease) we were alone again. In the next 32 minutes while we waited for and then inhaled our lunches, we exchanged enough personal information that we could say we actually knew each other, well as much as you can know in that short of time. The rapid pace of the questions and answers reminded of the “Speed Dating” game that was so popular about 10 years ago.

My 32 minutes of personal time with Heather Kennedy came swiftly to an end as the clock struck 12 and she was off to her next commitment. I promised to bring her a copy of The Ribbon of Road Ahead so she could know me better, and I promised to remind her on a regular basis that her thoughts are very worthy of being preserved for eternity in a published format.

Time to write, Heather.

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

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