ANDI

Andi

I just finished my conversation at the cat trikes booth when she rolled up beside me.  She took out a handheld device and after a few taps, she had initiated a conversation with the employee I had just been speaking with.  Thinking I knew how slow these devices can be, I waved goodbye and walked across the way to another vendor.  I returned to my own table.  Kat and I had been staffing it from the cold foggy morning to the sunny hot afternoon.  We were both amazed at the number of people who stopped at our booth to chat.  Many had Parkinson’s or knew someone with Parkinson’s. We had sent our care partners Ken and Charlie to retrieve an awning to shade the afternoon sun.  They had set it up in my absence.  In the late afternoon, Kat and Ken left.  By that time the woman with the wheelchair made it to our booth.  She rolled up, escorted by a handsome fellow who I soon learned was her husband.  Immediately she tapped her device and said: “Hi, I am Andi”. Thinking the conversation would be slow I stood up, grabbed my chair and took it around to the other side of the table to sit next to her  “ Hi, I am Carol. I think I saw you down at the Cat trike booth. Do you have one?” 

She took the conversation to a higher level by telling me some people get so depressed, because of their disability.  She tries to keep it upbeat. From what I could see she is doing a good job. 

We talked for over an hour.  I learned she holds a master’s degree in Disability Studies, works at a bank and is the vice-president of an organization that fights for the rights of disabled people. Involvement with people with disabilities is her passion

Our conversation was not slow at all.  I threw questions at her right and left.  I was amazed at how well I understood her answers.  With her body language, vocal inflection, vibrant face and speedy use of the communication system on her phone (which I learned that her husband programmed for her) I was able to learn many things in a short period of time. 

Andi has dystonia. She told me it’s much like Parkinson’s.  I looked it up:  a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.

She was diagnosed as a little girl.  Deep Brain Stimulation helped her, but as an after effect stole her voice. Her body is twisted from the dystonia.  But her strong heart, peaceful soul and her passion for life were very apparent for me.  It made me want to talk with her for days at a time. There was so much to learn from her.  I said “I think I have just found a new best friend. “  She reached over and gave me a tight hug and a kiss on my cheek.

In the days since our meeting, I have overwhelmed her with my numerous emails.  Some have had humorous tones meant to trick her into telling me more about herself.

 Do you have any secret powers?  Or maybe a special talent as a sound engineer with a studio in your basement?

Have you been a keynote speaker at a conference? Written? Done research?  I am sure you have not been hiding your brilliant mind behind stacks of dollar bills at the bank. What do you do to share it?

 

Andi answered my questions with carefully chosen words.  I hope she realizes that our time together was too short for me to get to know enough about her.  Perhaps for her “enough is too much.”

Time will certainly tell about that.  But honestly, I am glad for the short time spent with such an amazing human being. 

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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