Living in the now

Living in the now

 

Today has presented several lessons about living in the now. I am really pulling out of my memory banks a saying something like “you can worry about tomorrow, agonize over yesterday but the only thing that gives you peace is living in today”.

I woke up before sunrise this morning and saw a friend was on a social media chat.  Hmm, pretty early so I sent a message asking her “What’s up?”     She replied “I am having twins”

WHAT? GREAT!! CONGRATS!!!

Her responses were not filled with glee.

I can’t. I am worried. Everything is going to double, my body, my expenses.

You need to celebrate.

Celebrate?

Everyone is a little scared about having a child.

I am scared to death. I am impatient. I cannot cook. I need a lot of alone time. I am going to look like a giant. I will never be beautiful again.

Oh, honey you will be more beautiful than ever.

The sun was glorious, peeping its golden head over the horizon. It was to be a fantastic day. My young friend could not see it. She was caught in the unknown of tomorrow.

 

A little time later I participated in Amy’s Dance group. Tuesdays are choreographing days and we are learning to put together moves into a group dance. Amy proposed that we each choose a dance move that represents something between our past before Parkinsons and our future. Steve’s move was the ASL sign for “now, or present”. You have to know Steve, he is a genius with words, has a pun for everything. His choice was so meaningful, so perfect. It represented where I want to be…in the now.

In the afternoon, I decided to rewatch the Davis Phinney Victory Summit from Baton Rouge. There was Amy again, not dancing but speaking on “Living Well with Parkinson’s”. She recalled her shock with her diagnosis. And now, it is a reality of life. She commented “If I think about the past, I want to remember things like when I took my son skiing. I have no control over the future. I could walk out into the street and get hit by a Fed Ex truck. Life is right now.”

The majority of my life I  hid my worry in planning. I wanted to be considered a well-planned and highly organized person. It was a cover-up of sorts.  Because of always having to plan, I had a really hard time “shooting from the hip.” It took a lot of energy to worry about my plans. So at this late stage in life, I am just learning spontaneity. I am learning to take each day as it comes to me. I like to think I am learning to dance.

 

Can you recall a day when you didn’t have anything planned? You just let it happen…what did you do?

 

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 www.ultreiablog.org 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 caclupny@gmail.com (541) 720-4256

One thought on “Living in the now

  1. Carol, you are already a great dancer and the best thing about learning dance is that there is no end, there is always something more to explore. The second best thing is that there doesn’t need to be a plan for dancing, the best dance is that one that comes out of nowhere. Much love to you, I so enjoy seeing your face each morning.
    Amy

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