Tuna breath and Stinky Feet DBS Program Session3 June 13

The medical assistant called me in to the exam room, and suddenly I became very self conscious.  I was going for the third programming of my Deep Brain Stimulation Neurostimulator, which meant Dr Hiller would be “up close and personal”.  There had not been enough time to find a breath mint to take care of my stinky breath.  You see, I did not “hunt and gather” enough healthy type food for the three hour trip to Portland so I sent Charlie to forage through the nearby cafe and coffee shop.  He made an excellent find and brought back to me tuna on a bed of greens.  I wrapped the tuna up in some lettuce and ate it sandwich-like right there in the crowded waiting room..  Actually, I snarfed it down, being so hungry.  Glancing up from my grazing, I realized that other patients were watching me, and probably smelling the tuna also.  And maybe my feet.  I had chosen the wrong shoes.  Perhaps my whole outfit was just WRONG, but we’ll stick with a rant on the shoes.  They were old Keen sandals.  Not hiking sandals or water sandals but nice ones.  Well maybe they are actually maryjanes but Keen I am sure of.   They felt loose this morning, probably because they are so old they are broken down.  So I put on a  pair of white socks..  At some point in the day  I noticed Charlie was wearing mid calf white socks with his Keen hiking shoes and shorts.  It was then I  realized how ridiculous my white socks looked with my Keen maryjanes.

  Taking off the socks required taking off the shoes (well of course Carol)  When the shoes went back on my feet they were loose again without the socks.  I asked Charlie to assist with tightening the buckles and it was then he noticed..the SMELL..my shoes and/or my feet stunk!

Dr. Hiller with 2nd year Medical Student Art in tow got right to business.  I am sure she did not give a rip about my breath or my feet, unless we figured some way to relate those two things with Parkinson’s Disease.  First thing I realized and she realized, I had not followed the instructions to TAKE MY MEDS as usual.  I was off my meds and a twitching mess.  So I took them immediately.  She arranged for me to come back after her next patient to continue the programming.  Medication in effect, I returned to the exam room.While she was turning knobs and punching in numbers  on her handheld  unit, Charlie told her about the recent adventures with the Parkinson’s Women Triathlon team.  Dr Hiller has a way of slightly revealing her delight with a tiny smile, and then its ever so fast gone. Both Charlie and I saw it!   All business this woman.  I tried to get information from her.  “Why did my friend have to be awake for 5 hours during his DBS?””Why does one doctor use staples and not the nice dissolving sutures I got?”  ”  I had a great surgical experience here at OHSU, why hasn’t this method taken on everywhere?”  No responses, nada. Dr Hiller is hyper-focused on my tremoring right hand.  Med Student Art is intently watching over her shoulder.

Before long the PD pain is gone.  Tremors are under control.  I am given instructions to learn to walk properly again.  There are complicated things I must do with adjusting my med dosages and different ideas and therapies to try. “See you back again in three months” she says as she whips down the hall.  And three hours later I am home, exhausted, tuna breath and stinky feet and all the rest of me.

This surgery has been a miracle.  Now I need to work to get my body’s atrophied muscles and rusty  joints to be functional again.

But at this very moment  am going to brush my teeth and shower.

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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