INDEPENDENCE OR DEPENDENCE

Independence and Dependence

I find that I need more and more help with things.  When there is something I think I can do by myself, I jump at the opportunity.  For example, on Fridays I meet my friends Ron and Anne at the Buttercreek Coffee Shop in Echo for a couple hours of bluegrass, Irish and old timey music.   I know I can get my guitar into the car.    I do a good job of  driving, and I park close to the building.  I can unpack the guitar and play the afternoon away.  Although I am tired at the end of all this jamming, it’s still possible for me to pack up and drive home.  Some days like today I even stop at the little diner for a snack.

It has been concerning to me that Charlie and I have not been out on the tandem much.  He hurt his back which has taken a couple weeks to recover from and then came down with a bad spring time cold.  I have missed riding out in the countryside.  I can ride the trainer but there is just nothing like being outside.  So today, I decided to explore the possibility of the independent action which I have not done in a year at least, taking my single road bike out for a spin. 

I chose to take the Bianci bike off the trainer just because the brake set up is better than on my newer bike.  I told Charlie what I was doing, where I was going to go and set his cell phone next to where he was stretched out on the couch.  I took the bike out of the garage and wisely decided to practice getting on and off in the driveway before I walked it on the gravel out to the paved lane which would take me to the busier county road.

GOOD IDEA!

I was able to lay the bike down, step across the frame and pick the bike up.  That’s as far as I got because then my right foot froze.  This is a familiar phenomenon to me as it used to happen occasionally when I rode the single.   My solution came when someone would ride up next to me and then I could step right over and get my foot on the pedal. Not today.  I was by myself.  I had the bike up but the foot would not lift the few inches off the cement to get on the pedal. I worked on this for some time with no luck.  Finally I looked out across the pasture and that was enough distraction to release the hold on my foot and I succeeded.  Then I gave a couple pushes with the left  foot and as I lifted it up to the pedal my left ankle gave me some extreme pulses.  I could literally see the contraction of the muscles.  I had not seen anything like that before.  I scooted the bike back and forth across the driveway, trying to get my left foot on the pedal and go.  No Luck. I could hear Charlie’s voice  remind me  that it’s a smart person who knows when to stop and come back to it later.  So I put the bike down on the driveway.  Now I would need to step back across the frame with the right foot.  I swear, I was there at least 30 minutes trying to pick up  my right foot.  I tried moving the frame, and the wheel and the handlebars in different orientations. None helped. The foot was stuck.  Here I am in the driveway, not 25 feet from where Charlie is sitting watching the game on TV and I am stuck.  Hoping no neighbors had their telescopes out spying on me and my ridiculous situation, I kept trying. Sweaty and hot , but still in control of my emotions, I reached into my back jersey pocket for my cell phone to call Charlie.  The distraction released my foot and I was able to lift it and step it across the frame.  Oh my!

 I leaned the bike against the wall in the garage and went inside. Forty-five minutes had passed.  My face poured  sweat. I had chain grease on my leg, and looked basically like I  had been out for a ride.  “How was it” said Charlie.  “How far did you ride?”  “I didn’t even get out of the driveway” I answered and then told him what had occurred with my feet and the pedals, and what I thought I might do to work on this problem so that some day I could ride my road bike again.  He said “You are a smart woman, Carol”.

Another piece of independence lost? Or another item that just needs work.  I have to decide how badly I want to ride out by myself, or to meet up with girl friends.  It will happen, it just wasn’t happening today.

Remembering a time when I could ride out by myself.

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

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