How I want to Scream….

 December 14, 2015

(A year ago today I said goodbye to my dad. I sat with him a couple hours after he passed, and told stories about him to anyone who stopped by.  His forehead was cool when gave him a final kiss.  Peace finally.  He had wanted to die for months. I thought about him a lot today.)
Today was a bit crazy…and at times I wanted to scream.  It seems as if I had just fallen asleep when  I heard “Carol we overslept”.  It was six am.  We were supposed to be on the road to Portland for my appointment at OHSU  by 6 am.  There was a truck of meat to load for delivery, all the stuff I needed, Charlie’s clothes needed to be packed and the animals needed  to be fed.  Charlie would not leave the house until he had brushed and flossed his teeth.  I was really ready  to scream at him but it would take too much time. We had three hours twenty two minutes and four seconds to get to my appointment in Portland.  The big Ford F-350 named Gertrude can move when it has to.  I was urging it on with whip and spurs while Charlie kept it reined it right at the speech limit.  Can I commence screaming NOW?
We made it across the I-5 bridge perfectly negotiated the turn to Lake Oswego and then turn back to The South Waterfront when my phone buzzed.   Luke: ” mom can I go home.  My back hurts.” Then before I could answer “Mom I got a ride home “.  Five minutes passed.
Mom I took two hydrocodone.”   What the…I did scream!  By then Charlie dropped me off at the door to the Center for Health and Healing and I was running for the elevator. “Start drinking lots of water. Eat something and take no more medicine of any kind today,”  my text screamed at Luke.
 Where is this appointment anyway? First floor. Speech therapy.  No wrong speech therapy. I am supposed to be at the Northwest Center for Voice and Swallowing.  Big difference.  Regular rehab therapist vs evaluation specialist with TECHNOLOGY. The receptionist says “Did you bring your paper work along?”  If I had been sent paperwork I would have had it done. You know my fetish with paperwork.  No paperwork came to me. She hands me a pen, a clipboard and a pile of papers to fill out.  How many surgeries have I had?  Do I smoke? Drink? Eat I eat cream at midnight? Am I a professional singer?  Why am I here? The questions are endless.  The evaluator calls me into the exam room and I sit in one of those funky ENT  chairs. Like an fancy upright dentist chair.  She says “Oh I see you brought paperwork.  But you are already a patient here at the hospital.  We know all of this.  Just fill out the last page.  But we don’t have time to do this now so you can do it when we are done.”  She puts a microphone up to my face and keeps the distance from my mouth consistent by an unattractive metal space bar.  An intern comes to observe. AN INTERN.  We know how I love speech pathology interns. I am on it. Where are you from? Where did you go to school? What is your area of specialty?  Do they pay you good here? Wanna come out to visit eastern Oregon? I’ll show you around, buy you lunch and offer you a job (oh back to reality) it’s revealed I am one of “them”. Charlie arrives on the scene and now it’s a room  of speech pathologists, from young to old we have it covered.  Both the intern and evaluator are delighted that one of Oregon’s former premiere speech pathologist couples is in their exam room. Now to the voice evaluation. It remains the  same as it has been through the ages from the beginning of speech pathology. It’s the tools of measurement  that change. “Read the Rainbow passage.”  (Gag or scream, which do I do first) “Give us a one minute narrative about your home town. How long can you say “ahhhh”. Let’s hear your range… pitch from low to high, high to low” Her laptop spews out charts and graphs. What, no oral exam? No hearing evaluation?  Nope. This is the Voice Lab. Recommendations: LSVT Loud.  The evaluator is very surprised we have local practitioners. I laugh. My former colleagues will now become my therapists!  
As I return to the waiting room to finish the only page of the questionnaire I hear the intern say to some unknown Voice and Swallowing Clinic professional “You know that couple that just left? They are both speech language pathologists. Aren’t they cute?”  Should I scream “you just broke your vow of confidentiality?  Ah no, they didn’t really…just insider chat heard on the outside.  
I am so tired, but there is more to tell….so stay tuned.
Disclaimer:  this summation in no way reflects the true professionalism of the Speech Pathologists I encountered today. 

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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