I smiled

I went to see “Cabin Fever,” a  local variety show dinner theater with the hubby.  We were seated at Table 9, right near the front center. Perfect.
As we waited for dinner to be served the table mate to the left said to me ” I want to learn about Parkinson’s Disease”.
“Ok”, I said, “What do you want to know?”
 The reply came rocket fire “I’ve watched you and I don’t see anything wrong with you.  You look like everybody else.  Oh I guess I did see Charlie helping you walk from the car”.
 “Well I work REALLY hard.”
 “And how come you are so positive and upbeat.  Most people with a diagnosis like yours just give  up.”

I smiled.

“There is no other option.  I want to live and live fully.  I am still alive, you know.

When I asked God “What am I supposed to do with this stupid disease? God replied, do something good.”

“And have you done some good things?”

“Why yes I have.  I have raised money for research, started a support group, made lots of friends and I think maybe I have brought some people hope.”

“How do you know you have brought people hope? How do you do that?”

Oh my.  I am speechless.  An escape to the restroom is necessary.  But before I go I say:

“I stay upbeat and positive because that is the only option.”

You have to wonder WHY God lets Parkinson’s disease attack so many people.  I could try to figure out WHY I have PD.  That would take so much time.  I rather spend my time doing things I enjoy.  And shouldn’t I be angry at God for messing up my life?  No, my life is not messed up.  I have had some challenging times mentally, emotionally, spiritually and physically, yes. And it takes too much energy to be angry.  So lookie here, I am saving time and energy by being positive and upbeat.

I heard this song the other day.  Performed by Stephen Curtis Chapman, these word brought me peace.  You can go to YouTube to listen of just read them here.

 Glorious Unfolding
Lay your head down tonight
 Take a rest from the fight
    Don’t try to figure it out

Just listen to what I’m whispering to your heart

‘Cause I know this is not

Anything like you thought

The story of your life was gonna be

And it feels like the end has started closing in on you

But it’s just not true

There’s so much of the story that’s still yet to unfold

               And this is going to be a glorious unfolding
          Just you wait and see and you will be amazed
       You’ve just got to believe the story is so far from over

So hold on to every promise God has made to us

And watch this glorious unfolding

        God’s plan from the start
For this world and your heart
Has been to show His glory and His grace

Forever revealing the depth and the beauty of

His unfailing Love

And the story has only begun

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
We’ve just got to believe the story is so far from over

So hold on to every promise God has made to us

And watch this glorious unfolding

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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