Learning to Read

Learning to read 11.18.20

I know the reason a teacher would want to be assigned to a kindergarten, first grade or second grade class.  By third grade most students are reading to learn. In these earlier grades, as children learn to read the magic of words comes to life.  Have you ever watched a child’s eyes light up when she discovers those squiggly lines on paper match up with sounds coming out of people’s mouths. It’s truly  a magical moment.

I don’t remember the day when words printed on a page first made sense to me.  I do remember reading voraciously as a child.   Mom would take me to the Carnegie library to choose several books.  I poured over those books for hours every day until it came time to return them to the library.  I reluctantly put those cherished stories in the book return box. Sometimes this made me cry.  When I reached school age my mom would buy me a few books from the Scholastic book order flyers sent home each month.  Soon, I had my own little library.

My high school had a small library.  I vowed to read every book in the two shelves of fiction by the time I graduated  I had to read over the summer, but the school librarian had a pleased smile when I returned the stack in the fall.  And I met my goal.

Almost 50 years later I have great difficulty reading a novel. My concentration fades after two or three paragraphs.  My attention span for reading and decreased motor movement in my eyes are undoubtedly caused by Parkinson’s Disease.

This is strange as I wrote a 294 page memoire. And currently, I am narrating it into a totally accessible audio book; print words accompanying the narration. Because of my choice of audio formats, each word I narrate into the microphone at Opal Studio in Portland must match exactly with the printed book.  I am in my sixties.  I have been diagnosed with Parkinsons for almost 13 years.  At one time my voice was very quiet and I ran out of air to speak more than just a few intelligible words at a time.  After a deep brain stimulation procedure in 2016 my voice started to come back.   When I was encouraged to narrate my own book, I thought the idea crazy.  But I set a goal.  Practicing breathing techniques seemed to improve lung capacity. My enunciation of multiple syllabic words was strengthened by working in “Voice and Articulation Drillbook”  by Grant Fairbanks.  First published in 1939, it showed that some things never change. I built up my out loud reading time from 5 minutes to 45 minutes a day.  By the time I arrived at the studio on Nov. 9, I was as ready as I could be.  I made many mistakes.  I tried to go back and correct them at the moment, but one day the producer told me I had 400 “pickups” to do.  I stuttered, mispronounced words, read too fast, slurred, didn’t show enough emotion, showed too much emotion, swallowed, yawned, made a noise when I scrolled a page.  Yikes!   She had diligently listened to each word in the book and now it was my turn to correct them. The engineer, Kevin played the two sentences before the “pick up” and I read along out loud trying to match loudness and tone.  He faded my previous narration and I kept on reading.  When I was done, he played the following sentence to be sure we had matches on both ends. Before long I became an expert at “impersonating” my own recordings from a week ago.

As of today, I have one more session in the studio.  The recordings will be “mastered” by the producer.  The book cover will be updated.  And then…it will be alive and available.

 

Like the child experiences magic over discovering she can read, I am thrilled beyond measure. Each time I hear the small sample of completed work, my eyes sparklef from the tears wanting to leak out, and my face glows.

The Camino walks, cycling RAGBRAI, writing and self-publishing a memoire, and now this. Parkinsons, my spirit comes out ahead again! 

 

 

 

 

 

photos by Patricia Moak

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 “Learning to Read

  1. I am looking forward to the release of your audio book. That was a challenging project and you met it head on, just as you have met Parkinson’s Disease. I am honored to call you Friend❤️

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