A Challenge Just When I Needed One

A Challenge Just When I Needed One

April 20, 2021

I have not been having a good time lately.  You read my last post, didn’t you?  My mind seems to be thinking clearly but the words are getting mixed  up.  I cannot walk any distance at all without support.  Up and out of the chair is an impossible task. The list goes on

I just wrote my Dr a long letter.  She’s the one to hear all my complaints, not readers of my blog.  You can just know that I have been struggling more than usual.  I know you will understand in the way all people with Parkinson’s understand.

 So, I stay true to my form.  What form?  The form of me that says no matter of bad I have been feeling, no matter how hard things are for me to do, if I have a chance to  go try something new I will do it…except for hang gliding, bungee jumping  off of bridges, or cliff diving.  These things I have no  need for. But there are other challenging things I might try…yes,  there are.

A camping trip with long time friends was an immediate spirit booster.  I reserved two spots across from each other at the Deschutes River recreation area.  What fun we had telling stories on each other,  watching the baby owls preparing to leave their nest, sharing meals.  We also played hours and hours of cutthroat Kings in the Corner.  When they had to go back to work,  we got to stay another day at the park. (can you spell r-e-t-i-r-e-d?  Another night of watching the baby owls lead to me telling my Parkinson story in detail to other campers parked nearby.

Time for the bike ride. Charlie borrowed a mountain bike.  My tires are larger and heavier than a road bike so I thought it was good.  The old railroad bed had a slight grade of 3% at the most.  The challenge here was to stay in the smooth part of the track because there were patches of solid rock, loose rock, deep gravel, pea gravel some sagebrush,  limbs downed. 

In town I may ride at 12-15 miles per hour.  I thought we would easily pedal along at this speed on this gravel dirt road, taking an hour to ride to the end of the trail and return the same route  I actually hit the top speed of 6 mph at that rate we certainly would not get back to camp before dark. 

My DBS stimulator was bouncing in  my chest  and on the worst bumps I had to place my hand there to keep it from bouncing around.   That gave me less control than if I had both hands on the wheel.

Charlie thought something was wrong and came up beside me.

“Are you ready to turn around”. 

“No way” was my response.

I didn’t come here for some half done rodeo BBQ.  I wanted adventure and I was going to get adventure. 

Adventure it was. Bumpy road.  Avoiding rocks.  Making room on the narrow road for forestry trucks to go by.  Turkey vultures swooping for the critters we scared up.

 Charlie wanted some pictures with the river  canyon in the background. This could only be completed by my maneuvering the trike within 2 inches of the drop off.  I felt like my trike was going to take the leap with me on it.  We didn’t take that picture, but did find photogenic flowers in bloom.

Sometimes you just have to look at some new scenery.  Do something that’s a little challenging.  Get your mind off your woes while you wait for the doctors response.  Fresh air, campfire smoke, telling stories, star filled skies.  Lazy mornings. 

It’s a familiar scenario.  A rough path, a little push through the deep gravel  and I am back pedaling fast on smooth pavement.

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

6 thoughts on “A Challenge Just When I Needed One

  1. Carol, I love you! I learn so much about never giving up or giving in; I learn to face challenges with determination and humor instead of “woe is me”. I’m so glad you came into my life and ZI call you friend!

  2. Thanks again, Carol (and Charlie). You always tell the story in a way that gives me hope. My life is enriched by knowing both of you!

  3. Love your get up and go even when its tough. Parkinson’s seems to be hitting me harder, both hands shake all the time now and seem to be non stop. still have not the call as to when my surgery for knee replacement will be, going to call next Monday will be 1 month from when i saw the Dr in Portland. Hope your doing ok, your little trips are so interesting to read about.

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