What do I look like?

 

I once asked a very honest friend “what do I look like?”  “What do you mean, what do you look like?”  was her response. “ I mean do I look like a woman with a disability?”  “Yes Carol, you look like a 50 something-year-old woman with Parkinson’s Disease.”

I feel as if I have aged more in the past ten years than the calendar or mirror should show. Having a scapegoat in Parkinson’s Disease doesn’t make me feel any better.  Let me tell you what has changed in this once trim athletic clear skinned girl. I gained 50 pounds. My blue eyes seem to be sinking back into my head and are often reddened as I seem to have developed allergies to just about anything I put on my face.   My once blonde hair is darkening and thinning.  My skin is riddled with age spots, middle-aged freckles, moles and those funny patches of discolored skin that came on with the entacapone and amantadine and just never went away.  I concentrate to take big steps and to stand tall as my body wants me to shuffle around with a slight bend in my neck and upper spine.

What do I look like?  A sixty-something-year-old woman with Parkinson’s Disease.

Last Sunday we rode our tandem up the Yakima River Canyon on a fundraiser for Crime-Stoppers.  At the halfway point we took a short break before heading down the canyon on the second half of the ride.  Chatting with other riders is always fun, and we were notable in our “brain” helmet covers and asked to pose for pictures.  One woman stayed close by as Charlie and I mounted Grepedo.  Just as we started to leave she took a step closer and said: “We are proud of you?”  At first, I thought proud of us, why?   Then it hit me. I saw myself as the stoker on a green tandem bike.  She saw me as the sixty-something woman with Parkinson’s Disease.

The reality is I have Parkinson’s.  I look like I have Parkinson’s, whether I want to or not.  I can only change a few of the things about me as the disease progresses. My attitude towards the disease is one thing I have control over.

My only option is to let my Parkinsons shine.  If  I can make even strangers proud, well heck, let me flaunt it!

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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