You Can’t Always Get What You Want

This is an undated entry.  I think I wrote it in March 2020.

No, you can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometime you find
You get what you need

Songwriters: Keith Richards, Mick Jagger

© Abkco Music, Inc.

 

My current health situation does not reflect that of poor mother earth and her inhabitants.  Although my personal wellness is not in question, there are many people in dire need right now.  I want very much to do something.  I want something big to happen, so everything will be ok.  I don’t like this new “normal” or the newer “normal” that appears every day.  This spoiled princess brat wants what she wants and she wants it now! I want the old “normal”.

I find it really easy to give up.   I can slip into an apathetic state and not want to do anything.  What I realize I need to keep at it, keep trying, keep living as close as I can to “normal”

I need to put  my nightclothes on at bedtime, and shower and dress in  day clothes on for the day. I need to get up at a decent hour which means going to bed at a decent  hour.  Keep my medication and meals routine.  Eat as carefully and cleanly as possible  (ok the blizzard I had last night doesn’t count).  Brush my teeth, brush my hair, wash and wash and wash my hands.

I need to reach out to other people, by phone if possible.  I called one friend to hear her say “hey you are on my list to call”.  Its not only good for me, but good for others to hear a real live voice.

I need to get fresh air by going outside or even just opening a window. Exercise is so important, especially if I want to maintain health.

Because of trying to keep things normal, I am getting what I need.  I am having conversations that count.  Thanks to ZOOM I am drawing with Lorraine in the Sketch class, dancing with AMYSAYSDANCE, cooking and cleaning like I haven’t done in years.  I am reading out loud for Madonna Bradys radio show. And I have started writing again.

Not one of us is getting what we want right now.   I believe by keeping things as normal as possible, and trying, not sitting and spewing or grieving but really trying, we can get some of what we need.

What do you think?

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

3 thoughts on “You Can’t Always Get What You Want

  1. I love your book! Thank you for writing it so honestly. Thanks for letting us look into your life and mindI You are truly courageous. Courage is what we need to keep at it day after day.
    I’m glad to hear that you are writing again! Your public needs you!

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