April 25, First Programming session for DBS

Emotional Response: When we took Charlie’s mom to High Tea at The Empress Hotel in Victoria BC she exclaimed “oh my oh my”and “oh my”over and over again. She was absolutely delighted. Today I had the first programming session after my DBS surgery. My Movement Disorder Specialist Dr. Hiller, worked with me for about 90 minutes. And all I can say is Oh My!
I think it will be like peeling an onion, more layers and layers will be revealed as this device is tweaked and I discover what I have forgotten I was able to do. But I noticed, getting out of the car was not a struggle. I was up out of the car seat and walking. OH My!
Our God has been guiding me through this. I have been protected by angels, both heavenly and earthly. So many prayers and well wishes and visits and meals and kindnesses have been shared with me. And I am so appreciative….you cannot believe how much.

OH My!

This photo was taken a few days after my surgery.  Was it worth it?  At this point in time I say “You betcha!”

This is what happened: Due to an unforeseen event, Charlie could not escort me to Portland. What to do, What to do?  How about ask some friends to help?  I discussed this with a couple different Hermiston friends and finally concluded that if I could make it to Art and Rose’s house in Troutdale and they could help me negotiate the city traffic on Monday I would be fine. I often wonder if my friends know how important it is for me to be independent.  I am not foolish about it and I felt well enough to drive.  And so I did!  I waited for the wind to settle a bit and headed out on Sunday afternoon.  Art and Rose fed me dinner, gave me a comfortable bed and also  were able to assist me to the various places I  needed to go in the big city. All went well.

I met with Dr Hiller, my Movement Disorder Specialist  for the last 8 years, at Oregon Health and .
Sciences University  9am Monday. She appeared with a first year med student on her heels and a small tablet like device.What follows is my very simplified account and may bare only some resemblance of the actual procedure!   My Doctor looked at the locations of the incisions and commented on the job well done by the surgical staff.  My only point of discomfort has been the neuro stimulator, the thing I have calling and will continue to call the  generator, which is implanted below my left collarbone. Hmm she noted that is was also a “job well done” and “many  people have this device quite more noticeably protruding”  which I took to mean there are folks out there more  uncomfortable than you Carol.  So I guess I should feel lucky ??? Dr Hiller expertly ran her handheld  device through its paces and checked out my implanted device.  Then she started working on which of the leads (implants)  to be used.  She asked me what I was most bothered by and I commented #1 being stiffness and rigidity and #2 being tremors.  So she started manipulating my right wrist and arm and upping the amps on her device.  She had forewarned me to comment immediately on any strange feelings I had.  Shortly thereafter I experienced bright flashes in my right eye.  She backed the “amps” down until no secondary effects were noted and my wrist and arm were quite flexible.  She completed this a a few more times and my tremors disappeared.  Next was the left side. I was aksed to flick my fingers and as she “amped”up my cheeks began to feel like I had been shot full of Novocaine.  Again, she backed off and asked me to flick my fingers, which were sometimes most wonderfully coordinated and other times an uncontrolled mess of fingers tangling with each other. Soon, that setting was reached.  I was asked to demonstrate walking for the Dr. and med student.  I did pretty darn well, yet after sitting for awhile the stupid sciatic nerve wanted to act up.  I couldn’t really show them my stuff.  Dr Hiller asked me what med I would prefer not to take anymore.  Of course that would be ropinerole.  We made a plan  to delete this drug, and also to decrease the carbo-levo.  The good doc carefully recorded all the settings.  Told me not to leave town for a day to be sure I was ok with the decreased meds and new settings and made plans for the follow up appointments. Before I lft she demonstrated my personal hand held device which would be used for daily device generator checks, powering up and possibly programming changes.

Tuesday I woke up early and had a busy day until I finally left Troutdale around 3 pm.  No naps.  I drove straight through to home,  Awake, comfortable and confident in my driving..  Way cool!.
I know this process is going to take more time.  But truly, it is amazing!

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 “April 25, First Programming session for DBS

  1. Wow! So happy for you. The technology is amazing and so are you for having the courage to seek it out. Hang in there. You're blazing trails for many others.

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