Show up

Do I need to bring anything?

No. Just show up.

“Parkinson’s disease is a disease of the brain” Davis Phinney Foundation Ambassador Edie Anderson’s Dr. told her upon diagnosis. Edie used this same phrase with her physical trainer when he suggested a balance exercise. She wondered how that would improve her symptoms. Trusting that he knew what he was doing, she showed up at the gym and after a few months improved her one-foot balance time from 3 seconds to one minute. We all know how significant balance is to a person with Parkinson’s. (Living Well with Parkinson’s virtual Victory Summit, Omaha)

A long time ago, when the world was “normal” I wrote about having some “tools” handy. I might need them if I got myself in a mess like falling off the step into a pile of cardboard boxes, getting up off the freshly mopped kitchen floor where I just landed on my behind or getting out of a deep bathtub in a convent in Spain where I was the only houseguest and the nuns were already secluded for the night. These kinds of events are things you cannot train for! Maybe If I lived in the jungle, I could use some Jimmy Choi, the American Ninja Warrior with Parkinson’s moves to swing from tree to tree. In reality, I live in a desert and I can hardly do a chin up, yet.

More recently my blog post titled “Lessons Learned from the Ladder” reminded me that what I do now in the way of exercises (physical, mental, and spiritual) will affect my future. It takes some level of physical strength to hoist myself out of my kayak (maybe about the same as a deep bathtub), so it’s important to keep exercise up. In the movie Titanic, two scenes come to mind. One is the scene where the band is playing as the ship sinks. What discipline they had to continue! They were experienced musicians, familiar with their instruments, playing standard songs that they had memorized years ago. They had the discipline to stay at their post. In another scene, the ship is listing to the side as a priest leads a small group of people in praying the rosary. (If you do not know about the rosary it is a reflection from the birth through death and resurrection of Jesus.) There are three prayers used in the rosary that Catholic children memorize and grow in understanding as their intellect matures: the OUR FATHER, the HAIL MARY, and the GLORY BE. The people gathered with the priest on the deck of the Titanic resorted to those rote prayers to bring them comfort and to connect them with God. By the rote memorization from childhood, they had a tool they could fall back on. The familiarity brought a calming effect.

I developed some “practices” during the pandemic. These practices help me to develop the “tools” needed to get out of deep bathtubs or get myself going when I feel like becoming a permanent fixture on the couch. The biggest tool was to keep to a routine. During the routine of my day I did these things, not necessarily in this order: Get up at 7 am. Reach out to one person in a low-tech way (phone call, write a note, drive-by or ride by their house). Exercise. Take some quiet time for reflection. Go to bed at a decent hour. Take my medicine as scheduled. Participate in online groups such as AMYSAYSDANCE. (Facilitated by Amy Carlson, Davis Phinney Foundation Ambassador)

But the most important practice was that I “showed up”. By “showing up” for my day no matter how bad I felt, I experienced some relief from my issues and got something accomplished. Having a fun activity at 8:15 AM helps. For example the other night I had weird spasms and my legs cramped horribly. I got the cramps settled down and took a warm shower. I showed up for AMYSAYDANCE and danced like a crazy fool. After that,blogger-image-1211957437.jpg I was able to participate in my morning boot camp boxing workout (Kimberly Berg And I managed a bike ride in the afternoon. Just because I used the tool of “show-up”. Today I had another “just show up” day. I had a terrible sinus headache. Four extra-strength Tylenol, two cups of coffee, a Claritin, and finally a Sinutab got rid of the headache but made me sick to my stomach. After “showing up” I was able to do 45 minutes of my 60-minute-high intensity workout and after a short nap and a bite to eat, I am finishing this post.

If you do nothing else, show up. The discipline of showing up is just one tool that can lead to other useful tools. Who knows, you may just find yourself stuck in a deep bathtub in a Spanish convent and the strength you gained from all those bicep curls from class to get you out.


May18, 2020

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 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 (541) 720-4256

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