Not even Nemo. Reposted from June

Not even Nemo could keep me inside the MRI.  I was snug in the narrow MRI tube.  Under my knees was a pillow.  A wedge kept my lower back and pelvis in a comfortable position. Soft blocks held my shoulders in the tray. My head was enclosed in a cage that reminded me of a Lacrosse helmet.  A handsome young man, Sam, was at the controls. “Ramp up the air, Sam”.  Full blast was not enough!  I watched the beginning of “Finding Nemo” through a mirror strategically arranged to catch the projection of the movie from Sam’s laptop. The beginning of Nemo is quite sad. Tears started slipping from the corners of my eyes. “Breath  Carol Breathe” I chanted to myself.  “Soon you and Dorie will be swimming with the turtles”.  Then, a cramp in my back.  Tears came harder.  I realized I was not going to make it through 70 minutes of this brain scan.   #2  scan completed its pinging and banging sounds. Thank God it was quiet for a second.  “Sam ?” “Yeah Carol. Ready for the next scan?”  I choked on my words.  I didn’t have the courage to stay in and didn’t have the courage to tell Sam I wanted out. “Carol, what’s going on? Carol?” “Get me out Sam!”. Sam must have run from the control room because he was right there when the tray slid me out.  

Some months ago I was contacted by a research assistant in the Gait and Balance lab at Oregon  Health Sciences University.  He described a study that fit me perfectly, except for one part…….15 scans of my brain in an enclosed MRI with  no PD meds and no ingestion of a calming agent of any kind.  The study was looking for correlations between balance and cognitive skills.  I had already completed three hours of cognitive testing without much break before I was lead over to the OHSU hospital for the MRI. I was tired , a little weepy over poor Nemo’s Dad losing his wife and kids. Except for little left uneaten Nemo, Dad Clownfish was alone in the world. I felt alone…in the busy hospital, with caring researchers and my husband of 33 years nearby…I felt alone.

We PWP can feel alone sometimes.  We can feel unwanted because we are different, or uncertain because of the physical and mental challenges we face. Left behind because we can’t keep up.   Nemo followed the “skippers” away from the “school” was drawn by the big blue sea. For awhile he was lost and alone. There were lots of scary things “out there”.  Things that wanted to eat him up, or misguide him, or sweep him away.  Although getting caught up in the big net can be such a bummer, Nemo and PWP survive by following Dorie’s advice to “Just keep swimming swimming swimming.”

They let me come back the next day. This time we traveled to Beaverton. The research team had identified some value in the data I provided.  So the wiring began at 9:15 am.  I walked fast, walked slow, turned right, turned left, spun around, walked a tight rope,  stood on foam cushions with and without eyes open. These activities were simple enough until I had to double task; balance and walking and spinning while counting backwards from 297 by threes or naming every other  letter of the alphabet.  After a  couple hours of this rodeo, I was whisked off to Dr Dan’s office where more cognitive tests were administered.  One test I had to name as many words beginning with “f” as I could.  Made me wonder what some people say cuz I was in such a mood by then that the “f” word almost snuck out. Hungry, tired and craving meds we got on MAX and snoozed to the Lloyd center for food and fellowship with an old friend.

I saw my friend Brandi today.  She asked if I received compensation for my time.  I told her I was given lunch money. She asked me how I felt about being a research subject.  I feel, as I have from the very day I was diagnosed.  I have to find some good in this miserable disease.  If my experiences as a research subject will one day make another PWP’s life easier, than by golly its worth any bit of inconvenience its caused me.

I think I will watch the rest of Nemo now.

Author: 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 she was diagnosed with Parkinsons. Retiring from her career as a speech-language pathologist she decided to “take to the road” to battle the disease. Her 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 her to write a memoir The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease. Carol blogs about her everyday life as a middle-aged woman in the mid-stages of Parkinson’s disease. Her honest, humorous and casual narrative style brings the reader to an intimate understanding of Carol’s resilience and acceptance. Her blog, sharing the name of her 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 Carol received certification in School Leadership and Administration from Lewis and Clark College. She provided speech pathology services and was a program director for 32 years in the wide geographic expanse of eastern Oregon. Active in the Oregon Speech-Language and Hearing Association she received honors of the association and the presidential award for her work on recruitment and retention of speech and hearing professionals. Carol presented numerous papers and projects at local, state and regional professional conferences. She was appointed by Governor Ted Kulongoski to two terms of the Oregon Board of Examiners of Speech Pathology and Audiology, the state’s licencing and consumer protection agency. Since her diagnosis in 2008, Carol 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. She 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 Carol to participate in the Parkinson’s Policy Forum in Washington DC. As an attendee at the World Parkinson Congress in 2016 in Portand, Oregon, Carol presnted a poster session examining the decision making process for patients considering deep brain stimulaiton. At the 2019 WPC in Kyoto, Japan she presented a poster on vision concerns of women with PD and lead small group discussions. Her 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 she rejuvenated her voice and narrated her book. It became available as an audio book in 2021. As part of this project she 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

5 thoughts on “Not even Nemo. Reposted from June”

  1. Thank you for your insights, Carol. I enjoy reading your posts. Your strength and determination to keep on going despite the pain, frustrations and challenges of PD are admirable. Thank you for sharing your experiences. Also, your desire to help future PWP despite inconvenience, frustration, anxiety, and even pain now is inspirational.

  2. Thank you for your insights, Carol. I enjoy reading your posts. Your strength and determination to keep on going despite the pain, frustrations and challenges of PD are admirable. Thank you for sharing your experiences. Also, your desire to help future PWP despite inconvenience, frustration, anxiety, and even pain now is inspirational.

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