I thought I might write about a typical visit to my Movement Disorder Specialist, Dr. Amie Hiller at OHSU in Portland. It may not be similar to your typical doctors appointment…or maybe it is and we can share notes! I know one thing, the next several trips to Portland are going to be for DBS assessment, a bit different than what I describe here.Yes sometimes Charlie and I drive. When a routine check up is scheduled I like to experience some independence and travel by myself. My favorite mode of transportation is to FLY!
My appointments are scheduled on a Monday as that is the day my doctor is “an attending” physician at the Movement Disorders Clinic… I have been seeing Dr Amie Peterson (now Dr Hiller) every 3-6 months for almost 8 years. She knows me pretty well.
My day starts at 4 am. I need to get from Hermiston to the Center for Health and Healing at OHSU on the South Waterfront in Portland. Having showered the night before, I dash out of bed at the sound of the alarm and scramble into my clothes. I don’t really want to eat or drink because the little Cessna 9 has no toilet!
A 30 minute predawn drive finds me in Pendleton. There is no TSA there so a SeaPort Air employee checks my ID and reminds me to buckle my purse in with my seatbelt. Daylight is just breaking as the first officer runs through the safety features of the Cesna 9 Caravan. On the morning flight to Portland there is usually one or more fellow passengers.
The pilot prepares for take off. The first officer runs through the safety information at 1000 words per minute.
SeaPort Pilots love to hear what a good job they do landing this small plane.
Landed in Portland! A van takes us to the main terminal where I catch the MAX to downtown.
If I get off at the correct MAX stop, a Portland Streetcar takes me to the Center for Health and Healing
I have arrived on time! My blood pressure is usually a little high when I get here. Dr Amie asks me tons of questions and then has me touch my nose with my fingers, touch each finger to each other, stomp my feet on the floor, hold out my arms, flop my hands back and forth of my lap, stand up and sit down a few times. Then she turns my head, my arms and my feet this way and that. The most dreaded part of the exam is standing still while she jerks me backwards by the shoulder to see how my balance recovers.
Hmm. Instead of a sticker for being a good girl, can I have a choice of any of these?
I return to the airport via Portland Streetcar and MAX. At PDX I have to check-in at the SeaPort desk, go through security and walk way out on the runway to find the plane. Well worth it though because there are beautiful things to be seen from the air.
I challenged the pilot to give me a good view of Mt Hood. I did not tell him to fly over the top of the Mountain!
Some eastern Oregon farmer as a sense of humor
This late summer view shows Mt Hood as a rock pile.
Mt Adams in the distance. I have been to the top twice.
I love the target at the Boardman Naval Bombing Range
Most flights ave been pleasantly smooth with clear skies. A few have been cloudy and bumpy and I get off walking like a drunken sailor. If I have to travel to a special clinic for Parkinson’s Disease, I also have to get some enjoyment out of the trip. No matter if its bumpy, its only an hour and I LOVE TO FLY!
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 firstname.lastname@example.org
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