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.


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.

Jesus is their Passion

I wrote this over a year ago.I came across it while looking for a another document and thought it worth reposting.

Jesus is their passion

March 29, 2018 ·

Charlie has been visiting the prison for a Saturday morning bible study for almost 18 years. The men come and go, but the small group of religious volunteers from the Catholic Church have been steadfast in opening scriptures for the prisoners there. They invited Charlie and I to come to the Wednesday night Mass so they could pray for us as we prepare to leave. Charlie is a regular visitor and has a badge but I had to get clearance and then go through security. It was a minor inconvenience to the special evening I was about to experience. Some of you may have read my short story “Wednesday night at the Prison” written almost exactly two years ago when I attended Mass there just prior to my brain procedure for Parkinson’s disease. This Mass was no less special. First the singing is amazing. Fr Daniel Maxwell, the presider, commented on the robust song lyrics brought off the page of the St Michaels Hymnal by the masculine voices. After the reading of the Passion, Fr. Maxwell summarized what it means to have passion in your life. It is to love in such a way that you make unbelievable sacrifices, as Jesus did when he was handed over be crucified. Reflecting on this reading, which I know I have heard at least 60 times and always gain more understanding, I thought about how much love it takes to love someone enough to lay down your life for them. In the Catholic Church Jesus is still hanging on the cross. He didn’t die for us and then we remember his death by a neat and tidy cross. The gruesome passion he suffered is there as a reminder He is still with us IN OUR MESSY AND OFTEN GRUESOME LIVES, ready to forgive our sins no matter how bad they are. He hasn’t left us, although we may leave him. He will welcome us back if we only ask.
Warm handshakes, smiles and good wishes were exchanged as the inmates left the chapel and returned to their cells. We went another direction, out into the cool night air. Laughing and joking as we walked to our cars. We are free. Many of the men we met tonight, although living behind these walls and wires are also free.They have reclaimed Jesus and made Him their Passion.

Kudos for The Ribbon of Road Ahead

Here are some comments I have received

Carol. Thank you. Wow, amazing work on your book.

Thank you for sharing your story, your journey.

I have admired you in your work, and even more now in the way you have been tackling your Parkinson’s.

I know many who have a chronic illness, my mom being one of them, and see how all of you with your ups and downs, manage to be an example of perseverance,  strength and faith in God.

You are an example to so many. 

God bless you.


Carol is an incredible writer and storyteller. I haven’t put the book down since I started. I’m savoring every word of her courageous journey. She tackles unbelievable physical feats with grace and humor and makes you feel like you are on the road walking beside her. BUY HER BOOK. It’s a must read for anyone especially if you have Parkinson’s or love stories of triumph over insurmountable odds. ❤️ Julie F

The literature of disease, illness and disability is full of books that make me feel guilty for not being a “super-hero.” Carol’s book is not one of those. She makes it clear throughout her memoir how relentlessly hard life with Parkinson’s disease is. I can relate to her struggles, setbacks, and obstacles because I have them, too. I identify with her. What enriches her story and gives me real-life inspiration is how she keeps thinking up wild and wonderful things to do anyway–things that make her life even more difficult but also more meaningful and worthwhile! She provides a role model for continuing to live well when it seems impossible to do so. I need this; I need to see how I can still have goals that are attainable for me, but require a strong sense of purpose and commitment. Her victories make mine seem possible. The title of her book reveals her perspective: it’s not about the destination, it’s about the long, hard journey, and I can do it, too! Every “parkie” should read this book, and those who care for someone with Parkinson’s will benefit, too. Gilbert

This memoir about Carol’s struggle with and determination to overcome affects of Parkinson’s Disease is remarkable! The author opens up her deepest feelings and yet is never afraid to laugh at herself in her struggle. She is an inspiration to not only those with Parkinson’s, but any other debilitating disease. I love how she hears of important research and results and then goes for it! It was fun being along for the journey of the Camino and RAGBRAI. She never glosses over the pain or the difficulty but instead uses her faith in God and the encouragement of her family and friends to keep her moving forward. So glad she was inspired to write this!

Carol takes us along on her personal journey through the trials, challenges and traumas of adjusting to a Parkinson’s diagnosis at 50 years old. One might expect that this would be boring, tedious and dull, but not with Carol. She will have you laughing and crying along the way through multiple treks on the Camino de Santiago, the RAGBRAI bicycle rides through Iowa on the back of her tandem bike and the ultimate trip through deep brain surgery. She entertains, inspires and challenges anyone struggling with a tough patch in the road. If you are looking for encouragement on your own journey or just want to follow along with this fun, positive, resilient lady, grab this book and read. You will be glad you did. Mary Kinsch

Through her personable writing style, Carol shares her Parkinson’s journey with the reader in a way that inspires, educates, and warms the heart. Through the ups and the downs, and from darkness and into the light, this story offers encouragement and a nudge to each of us to “do something good,” with the challenges we face. Jenny Davis

Carol Clupny takes readers on an incredibly honest and brave journey through her challenges and many victories after her diagnosis of Parkinson’s disease at age 50. As she travels on the Camino del Santiago in Spain, not once but three times, the reader is right there facing the hills and rain and able to celebrate her pushing the limits of this incurable neurologic condition. From travels walking through Spain to biking across Iowa, to brain surgery back in her home in Oregon, she takes on life’s challenges with spirit, love, faith and a contagious sense of humor. The story is a true inspiration for anyone. Jill

What’s in the ditch?

In my book “The Ribbon of Road Ahead” I wrote about what I did to entertain myself while riding in the “stokers” seat on the tandem bike.  I think I built a car and ran it on whiskey fumes from items found in the ditch on Despain Gulch Road, but you will have to read the book to be sure  Being in back has its benefits, one is I always know where Charlie is. The second, because I cannot see around him, I spend a fair amount of time looking at what’s on the side of the road. 

The original title of this post was “Shoe shopping on Edwards Road”.  I only saw one pair of shoes next to the road on that ride.  Although I was glad it was a pair or someone would spend their whole day looking for their one missing shoe, the shoes had no laces and honestly, were not in retail condition.

I thought my story would be called “Shoes and socks” when I saw something white going by on the left.

But what I spotted was a little girl’s white fleece glove.  This was on the trail near the flooded park.  Had it come downstream with the waters as they spilled over the banks and undercut the path?  I think not.  The white glove appeared to have been out in the weather, but not in a flood.  Without its partner anywhere nearby I could only suppose it dropped out of a pocket when she reached inside for that last bit of the brownie she had brought home from the school’s party that day.   Without its partner and a good cleaning, it was not in condition for retail resale.

The hat I spotted was out in the road near the sign “END of 30 MPH ZONE” and had not yet been smashed by a passing car.  My thought was that a farmer had taken it off and set it on the cab of his pickup while he kissed his wife goodbye for the day.  He did not notice the missing hat until the linger of the kiss was gone from his lips.  I looked at the hat with its sweat-stained band and faded emblem, and thought  “no, not worth stopping for”  as it has no retail value.

There wasn’t a lot to see out there in the ditches today.  I didn’t collect anything of any retail value. I didn’t sell a book to the man throwing a ball to his beautiful red dog, or the guys getting ready to pour a foundation for a new house.

What I did collect was sunshine, a soft cool breeze, a couple hours of bicycling and the undivided attention of my husband. 

Much more valuable and I didn’t have to go into a ditch to find it!


Dont sweat the small stuff

I am 5 days into a transition of medications. I am changing from one antidepresent that I have used for many years to a new mediucation which may help me with some of the neuropathy in my feet. The transition has been going well.

Not that this is a bad thing, but today I felt some emotion. I mean real emotion in that I got angry. A strange but familiiar feeling, we all know. Yet I have been medicated against feeling it I guess.

It was a dumb thing, I got angry because Charlie said he didnt know something on the computer that I was sure he did.

My short burst of anger totally exhausted me. For three seconds of anger, it took me twice as long to get ready for a bike ride. I could not walk out to the bike. I shuffle stepped my way out the door. I could not pick up my feet walking across the lawn and the gravel drive and had to be careful not to fall.

How stupid. Its better to take a couple of deep breaths or leave the room. It certainly wasnt worth the energy to get upset.

I got on the bike. I rode. And after a few minutes of being back in the saddle, life returned to normal.

Sleeping in

It has been a wild three weeks.  We put a few miles on our typically garaged Ford Fusion.  It served us well in rain and cold.  A fuel miser it was as we got 41 mpg!  I had three traditional book launch parties and two presentations I added time into to talk about the book.  And in Eugene, we listened to some speakers at the PRO conference.  I sold some books, just enough to make the trip worthwhile. This was help at Hotel Eugene, formally the Eugene Hilton.  They are tearing that place apart, but the meeting rooms I spent hours and hours in presenting or listening over the years were still the same. We had planned on taking Grepedo the bike along but the weather did not cooperate. Gertrude the truck has a great heater but would not have gotten 41 mpg!

After the whirlwind trip to Coos Bay, back to Eugene and driving home, we didn’t even unload the car.  We couldn’t even sleep in!  We got up and drove to Moses Lake where we spoke to their Parkinsons support group.  What great, brave people we met. At the conclusion of the meeting, we visited for a while.  Driving around and round Moses Lake was fun, but the real fun began when we finally found our friends John and Carol at their new house.  It was an evening like we used to have on the Blue Couch with snacks, beer, and story after story until 9 pm rolled around.  Then it was keep the eyes open with tooth picks kids because we had a two-hour drive home.

This morning I slept until 10:30.  Charlie came home from Mass and slept from 8 am to 1:30  pm.   I think we were tired.  I know we are tired, still.  He had big dark circles under his eyes when he left to teach a class. Maybe tomorrow he will sleep in again.

How fun! Meeting new friends and seeing lifelong buddies.

Since The Ribbon of Road Ahead was officially released on March 15, I have spoken to 4 groups and did two impromptu “readings”.

On March 21, I hosted a gathering at Prodigal Son Brew Pub in Pendleton, OR. It was truly fun and a delight to see friends, former co-workers, community members and even the gentleman who hired me for my first “grown-up” job out of college.

March 24th I spoke in Hermiston at my church sponsored by the Catholic Daughters. My relatives Al and Delora Clupny were there along with other former co-workers, community members, church friends and my first “boss” in the first “grown-up” job.
This day, book sales totalled over $1000 AMAZING

On March 31 Charlie and I travelled to my home town of Walla Walla for an event sponsored by Jeannette Barrow. Mary Rose Clupny was present! There were 11 Speech Pathologists, including the next “boss” who I followed in administration, friends from childhood and members of the Parkinson’s Community in attendance.

April 1, in honor of the designation of April as Parkinsons Disease Awareness Month, I addressed my home Parkinson’s Community at our support group meeting. Our special guest was a county commissioner who read a “Proclamation” declaring Parkinsons Awareness Month in Umatilla County.

The impromptu readings? Pendletons First Draft Series and Hermisotn Library Writers group.

Back on the bike…

There are still patches of snow where the warm finger of the sun’s rays have not been able to reach.  Mounds of ugly snow are pushed to the ends of parking lots,  their melt water streaming to find a drain.  The temperature has risen up to the 40’s.  It’s time to get the bike out.

But its not just any bike.  Its a Co-motion tandem,  Oregon green with bright yellow trim. And it has a name.


The green periscope torpedo tandem.  It takes a captain and a stoker to ride a tandem. Communication between the two has to be good or you end up getting really frustrated with each other.

As we get back on the bike (today is the 2nd day we have ridden) we are reminded how important communication is.  Its a reflection of our life, of our marriage.  It makes things work.


moments of victory

This appeared on the Davis Phinney Foundation FaceBook page today.

Moments of Victory® – Carol Clupny Doesn’t Let Parkinson’s Slow Her Down
Living Well, Moments of Victory
March 16, 2019
What has your journey been like since your Parkinson’s diagnosis?
After being diagnosed in 2008, I continued to work as a Speech-Language Pathologist. When I retired at age 52, I took to the road, literally. In the following years, I walked over 1000 miles on ancient pilgrimage trails in France and Spain. My husband, Charlie, and I started cycling and pedaled three times on the Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI) with the Davis Phinney/Pedaling for Parkinson’s team.
Deep Brain Stimulation and major back surgery in 2016 provided amazing changes in my physical and mental skills. I wrote a book about some of my adventures which will be released in mid-March 2019. The completion of The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease was certainly a victory for me.
How do you live well each day?
Both my dad and my grandpa lived until they were 94. That’s a lot of years for me to live well. Recovering from back surgery and writing the book kept me off my feet for a while. Now I am recommitted to my health. Good nutrition and exercise are priorities. I approach each challenge with a positive view; never saying “I can’t” but rather “How can I do this”?
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
When I was first diagnosed, I wasted time being discouraged about my future. I wish I would have had a glimpse ahead to see how well I would live. So much good has come into my life in the way of friends, opportunities and adventures that may not have occurred if I had not received a diagnosis of Parkinson’s.
What do you wish everyone living with Parkinson’s knew about living well?
“The more you move the better you feel.” “You are what you eat.” “Attitude is everything.” “Love yourself.” “You are going to be okay.”
We hear these phrases so often in our lives that we take their truth for granted. Actually, they hold the keys to living well with Parkinson’s. Exercise, nutrition, a positive outlook, loving the body you are in and knowing in your heart that everything will work out are keys to living well.

In the news

For the past several days I have received emails with links to newspaper articles inviting people of the community to one of several book parties. These articles were written by what I will call “e-interviews.” I sent a press release, a response was given for some pictures, or “please answer these questions”. Amazing how this interview process has changed in the technological world. It actually works well for me as some times I cannot keep a string of thoughts going in the right direction. It gives me the opportunity to reread, reflect and restate. These articles have been accurate, using my words.