An Apple, Some Peanut Butter and a Bottle of Water .

Tears.  Months  go by without tears finding their way down my cheeks. Then they come.  Tears sting my eyes as I try to fight them back.  I dam them up until they overwhelm my efforts and spill. Wiping them away with the back of my hand I say “Damn, what are you crying about?”  Its this stupid disease.  And even worse than that its what I have done to my back and how the pain is compounded by this stupid disease. And even worse than that I am crying about it.  I am letting those tears, the ones I cry inside, slip out into the world.  The disease is winning.  It now can be seen by the world.  By my tears, by my noticeable limp, by this weakness on the entire right side of my body, by this tremor that no longer hides itself, by the fact I am crying so much lately, it is winning.

Cindee (yes Cindee my physical trainer) starts the treadmill and says “Where are you walking today?” ” I am on the Tour du Mont Blanc”.  Tears well up and creep out.  I keep walking the treadmill trails and then I start talking.  But I can’t say the words. I can’t say “I am scared shitless about this walk around Mont Blanc”. So instead I talk about how I have found a route I know I can do and neither Charlie or I will know any different because its all new. I suck up those tears and attempt to put myself in the place of optimism. The place where all my dreams come true

Cindee keeps me going at the 8 elevation for awhile.  She notices how its become easier for  me over time.  I notice I am walking at only 2 mph.  She notices how quickly my heart rate returns to normal. I want to say what  I am thinking “Its going to take me all day to go 5 frickin’ miles.” She puts the weights back on the rack “Remember when that was hard for you? Look how much stronger you are”.  My thoughts spiral down and down and I want to say “Right. We both know better.  I have these grandiose ideas.  There is no way I am going to complete my trifecta. Not this year, Not ever. Who do I think I am.  I have Parkinsons Disease”.

“I have been afraid Cindee.  For some reason I am afraid to  go out by myself.”  “Hey you rode your bike here the other day”. “That I did, but I am liking that less and less.  I am losing confidence. I need to get walking and there is no one to walk with.”

“What are you going to do when you leave here Carol.  Walk or ride?” “Probably walk. I need to walk”. “Let me know when you get to the top of the Butte”.  Ok, there’s the accountability. I am not one that doesn’t “show up”.  I am not  one who does not follow through.  And I would be quite ashamed if I did not do what I said I  was going to do.  She had me!

Back home from the gym I get my toe socks on, then a pair of  light wool hiking socks.  My hiking pants.. what size are these anyway, they are fitting pretty loose.  OMG these are  men’s pants?   A tech shirt, my favorite guide shirt, my famous pink camino (camino yes not flamingo) baseball cap, Boots tied and I am ready for my pack.  To the pack I add a pair of scissors and some leuko tape just in case a hot spot  or heaven forbid a blister needs protection.  Oh, I should bring a snack and some water.

What do I want for a snack?  I pack the perfect things. An apple. I can’t eat an apple without being glad about it. We just happened to have some lovely crisp apples so I grabbed one.  What goes good with apples? Working in Joann Pringle’s preschool class, (where I developed a love for little kids with disabilities and learned the REAL words to “Bringing home a Baby Bumble Bee”)  I developed a taste for her favorite snack, apple and peanut butter  I put a little peanut butter on a WHITE tortilla (because as you remember not even Nutella makes a whole wheat tortilla taste good!) A bottle of water fit nicely in its place on the side of my pack, right where it belongs, where I am used to it. Familiar, even comfortable, the pack goes on. Trekking poles in hand I lumber out the door and off to the Butte. I am not walking even two miles an hour today.  But I am walking.

As I walk I think how horrified my son Luke would be if he  drove by  with friends and one said “Hey isn’t that your mom?” We are not used to seeing a middle aged woman marching down the sidewalk with trekking poles, hiking boots and a well worn backpack here in Hermiston. That it would embarrass him makes me smile. Then I imagine a police officer pulling up and questioning me “Ma’am we have had reports of a  possibly intoxicated homeless female weaving across the street.  What’s in your backpack,? “No officer I’m not drunk. Its JUST Parkinson’s Disease! I am carrying an apple, some peanut butter and some water.”   I hope to get to say this sometime because this scenario brings a chuckle.
Then, while climbing the Butte, I see the Cross.  I think “Keep your eye on the Cross.  No one ever stumbles when their eye is on the Cross”  Just then I trip and fall to my knees.  Oh my that leads to a need for introspection!.
Well, when one falls down one must get up but I am having a hard time because now I am laughing hard.  I have many memories of falling and laughing so hard I could not get  up.

My day has become brighter.  Forgetting to eat my snack, I get to the Cross on the Butte, down and back home without any of the above situations actually occurring, except the falling of course.
I plunk myself in the recliner, take off my boots, finally eat my snack and take a nap.

Do you ever, like me, make life so complicated that it makes you cry.  You spiral downwards in frustration, worry, fear?

 Then its time to take the challenge.  Pack up a snack, take a walk and look to the Cross.

Smile. Laugh when you fall. Get up and when you are home, take a little nap. You’ll feel better. Its that simple. I promise.

All is well, with my soul, all is well.

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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