Countdown to DBS. 9 days to brain surgery.

DBS Countdown to DBS 9 days to brain surgery.

I think it’s Monday.  It’s also the day after the “Spring Forward” time change.  I would like to say that the change does not affect me. I would also like to think that the wind  does not affect me. Or the change in barometric pressure when a weather front pushes through our area. Yesterday we had all three and I think it’s a trifecta. Wish I could win money, but I am not coming out on top of the betting game.  I need to take action.

Having a conversation with me is like trying to herd cats on the Hermiston Butte.  Who would even think of doing such a thing? Yet if you did… you might experience this…The big cat sees a rodent, the black cat is scared to death and hugs close, the young  cats don’t follow trails and those stray  cats we picked up on the hike  turn this way and that and totally have their own agenda.  The cats, like me, may never quite get to where they are supposed to be…the end of the story…but I will try to get the whole though through without “bird (cat) walking” too much.

Time changes throw everyone off just  little.  Young children may take awhile to adapt.  We all enjoy a bit more daylight yet it throws the dinner schedule off.  I make mention here as it throws my medication off by an hour.  Knowing that  a change is coming I need to make some decisions.   Prince Charlie hasn’t adjusted and brings the med box around, I let him know I  am on top of this one.  I can  suffer through one hour and get back on schedule with the time change.

Bird walk #1.  Skipping back a day to Saturday.   Nancy on keyboards and me on guitar
accompanied Sara, Doreen and Charlie for  Mass music  The parishioners who had lingered in the foyer were gathered up and witnessed as Fr. Maxwell anointed me. Feeling blessed and hoping for healing, Charlie drove to the  GP in Pendleton where we had been invited to listen to the Irish Singers. Their music  was fun. We met up with so many friends new and old and former fellow 
coworkers and friends of friends, and their daughters and sister’s friends and boyfriends  and girlfriends and husbands and wives that well, I truly listened to maybe one song.   

Bird Walk #2 Sunday was busy, but in an nice sort  of way.  I wanted Charlie to see me ride the new bike. By the time we were dressed for the possible rain, it had arrived.  Good thing we have the gear because it rained hard and we rode hard.
Then the wind blew. Hard. I mean really hard.  We were home just in time.
The weather cleared off just as Fr Maxwell and our builders arrived to bless the new house site…
In was clear blue blue sky and that green green grass of early spring.  We had nice visit with the three.   Glad to know the workers will be protected from injury and the land ward off evil.
A stiff  stiff and sore and tired Carol fell asleep on the couch.  Like so many times when I fall asleep early I woke up at midnight (Today so I am back on track) and was wide awake until 5:30.  I looked at the computer screen the entire time.  Made no decisions, bought nothing, read nothing, wrote nothing.  What a waste.  Falling back to sleep I started having cramps in my toes, then my calf, then my hamstrings. Prince Charlie arrived on the scene with my medication and the “cramp pills”. And I slept to 9. woke, then back to sleep…awake, sleep and finally up at noon.  Wind was up, Charlie was gone, I felt wobbly.   No bike ride today.
I set out to put the laundry away.  While doing so, the top closet shelf came down  on me taking the next shelf and all the clothes to the floor. Ok its mess.  But I am not hurt.  I gathered everything up, replaced  the shelves and start putting putting the clothes away when the darn thing falls again. Apparently I needed stronger little brackets as the current ones  were bent. Sitting there on the floor, under a pile of  clothes that had escaped the closet… I had to grin. I started to giggle. No one else would see the humor in this mess, or would they?  Would you?

Something strange occurred while I was giggling,and it made me stop and ponder. My Acoustic Celtic station on Pandora Radio changed.  The station was different, very different indeed.   Digging out from under the fallen clothes, I reach for my iPad to see whats on.  The new channel was “Slightly Stupid Radio”. How perfect for this catastrophe!

I changed it back.

The pile of clothes from the shelves  was left on the floor. The iPhone was near a comfortable couch.  I started to type  this blog post  and  there is an “error”. How can there be an error on my iPhone? There was no opportunity to save.  I lost what I wrote. Saddened, I turned on the computer, opened the blog, and there it was…everything I had written. Relieved, I fell asleep right then and there.
Only three things knocked  me off kilter (time change, wind, barometric pressure) and three happenings (shelf falling, shelf falling again, no, was it music or iPhone…or maybe those cats!) Survival with good humor was the key.

Ice Cream is good in Spain as is  napping

The point of all of this is…little irritations can add up to big issues. Anger can escape over the smallest things.  Being irritated and upset is a waste of personal energy.  Not going to let my energy be wasted.  No, won’t do it.   I will just grab a couple of spoonfuls of Cherry Garcia and take a little nap.

Ice cream and naps in just the right amounts do  wonders. Don’t waste the energy on anger.
Ice Cream in Iowa often comes with pie attached

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

One thought on “Countdown to DBS. 9 days to brain surgery.

  1. Ah Carol…hitting the nail on the head…anger is a waste of energy…good reminder…wishing you well…you continue to inspire me. Light and Live Ingrid

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