What does the DOC say?

 Monday November 9, 2015

My Doc (Dr. Amie Hiller, Movement Disorder Specialist at Oregon Health Sciences Center in Portland Oregon)  says:  “Its better to get the DBS surgery done sooner than later”.  “By later what do you mean Dr.?”  “Two or three years down the road”.  “So you are saying I need this surgery done NOW”.  “Yes, you will  have better results if you do it now. Its a process that begins with Speech, Physical Therapy, Neuro-Psychological and Neurological evaluations. These evaluation determine if you are eligible for the surgery.  The surgery will have you in the hospital just one-two days.  Then you return to have the power pack activated and the system tuned to its best potential.  That usually takes three visits.  When completed this is about a 6 month process.”

So  that’s what the Doc says.

Charlie and I talk during our drive back to Hermiston.  We realize that I am going on Medicare in February.  I send a quick note and I hear back immediatley that it might be in our best interset to wait unti then.

As the week progress I am feeling worse.  The dyskinesias are picking up, especially in the evening.   I have periods of significant stuttering or word finding issues.  As a Speech Pathologist these speech and language difficulties are quite concerning to me.  Friday rolls around and I am so uncomfortable.  I call  my current insurance MODA and talk to one of their advisers who explains more about the evaluations and what my current policy will do for me.  Sounds good.  I am going to get some of these preliminaries done and go for the big cost items when the Medicare kicks in. 

Friday Dr. Amie orders ua schedule of tests. I get a message from the Neurology Rehab Department at 4pm..and then I get a message from Dr Amie at 5 pm (this  is Friday) both letting me know the referral has been made.

Sunday morning my phone is turned off.  When I turn it on there has been a message from OHSU in regards to scheduling.  Sunday evening at 8:30pm there is a message from Dr. Amie.  Do these people ever take time off?

What else does the Doc say?  Back at the appointment she tells me the arrogant surgeon will promise me the moon.  She then reads me the list of side effects and possible complications.  I look her right in the eye and say “Let’s do this thing.  I am not afraid!”

It can’t be any worse than I am feeling right now.

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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