Countdown to DBS. Day 11

A little bit of excitement gets the blood flowing.  Or maybe when the heart pumps a little harder you feel excitement.  (Which came first the chicken or the egg).   Lets review the past few days in detail then I will tell about this mornings fun.

Thursday morning we left for Portland for my day of surgery preparation.  On the way I was able to pick up the OSAA radio broadcast of the Lady Bulldogs in the 5a playoffs.  That incited my blog post about basketball and teamwork.  
On board in the pickup we had the tandem “Grepedo” and my Bianci road bike.  My search for someone to help fit the bike to my special needs found Annalisa Fish, A physical therapist and competitive cyclist. I scheduled with her for Friday morning.  We dropped the bikes at our friends Art and Rose so we would not worry about their safety and we headed into the city.

Charlie and I met with Dr Burchiel, my neurosurgeon at the OHSU Center for Health and Healing.  We discussed the placement of the probes. The Globus Pallidus Thalamus is the structure of choice.   I learn that I will have alot of stitches, yet they will be dissoluble. What a relief as I don’t think I can handle that many staples.  Dr Burchiel also noticed I have a shorter haircut.  But he said he is going to have to shave some large patches so I may consider a somewhat shorter approach. Buzz or bald is my decision.  We talked about the medical “fellows” who will be involved as this is a teaching hospital.  After signing the consent forms, he released me to the pre-op department.

Charlie got  tram tickets and up the hill we went to the OHSU main hospital.  We were greeted by a long legged volunteer who guided us to the department.  Trekking poles came in handy as we practically ran trying to keep up.  A young medical assistant  drew blood and gathered all my vitals.  Then I was introduced to a nurse practitioner who was very thorough collecting a complete medical history and exam.  My nose was swabbed for MERSA, Strep and a half a dozen other bad germs.  Results indicated I am a pretty healthy girl.

From there we found our way to the Imaging Department. Today’s MRI images and live CAT SCAN technology during the procedure   will direct the implant of the probes.  When  I checked in and I  took some sedative. I was shown to a rest room to remove my bra as it was the only clothing item with metal. By then I was a bit whoozie and I got totally tangle in my bra.  I just had to laugh at myself..it was almost to the point of calling for help… The sedative did what it was ordered for and I am glad I did because once in the MRI  it was bam, pound, zing and rip (MRI sounds) and I was out in 30 minutes.  Food was first on the agenda, then getting back down the hill on the tram and to the pickup in the parking garage.  Medication really took affect and I hallucinated that the pickup was an MRI machine.  Arriving back at Art and Rose’s home Art “caught” me out of the pickup, guided me to a couch as a literally crashed and asleep I was!

Be glad when you can sleep dear people. 
Friday morning we found our way to Annalisa Fish’s Physical Therapy office.  Steve is a maestro of bike fitting and had my Bianci worked over and adjusted pretty good.  But then, it came to a crucial adjustment and the bike didn’t have it to give.  Annalisa took the measurements and went online to find a bike that would fit.  Guess what?  There was one right there in downtown Portland, and 1/3 off the regular price. We scurried down there and picked up that bike, even though we should not be buying anything. Returning to Annalisas office Steve went to work Checking the fit  The “Grepedo” was fit to me also.

I learned about bike short, riding position, pedals, exercises to strengthen and on and on.  I have been on that bike twice now and it only gets better.
Well, I could tell about the long dreary ride home, how Charlie slept the entire Saturday away and how I slept through the night.  Whats important here is I got excited about something. Parkinson”s disease tends to steal some of that emotion away.  It is just plain good to “feel.”

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 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

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