Being there for a friend in crisis

As I know more people in the Parkinsons community I am starting to realize how deep this disease reaches. Its not just about tremors, rigidity, balance. Below the tip of the iceburg there are dozens of non-motor symptoms of Parkinson’s. And intertwined with these often unseen challenging symptoms are mental health concerns. Some of these emotional issues come with the disease and others come because of the disease. Those that come “with” the disease can be attributed to the lack of dopamine in the substantia nigra, the part of the brain responsible for movement and also rewards. Those emotional issues developed because of the disease occur in more people than we think. The disease changes the way we move, think and speak. This effects relationships with family members, friends, professionals and caregivers. Relationships may break up resulting in financial struggles. Medical bills pile up. There is alot in life that can get messed up,even if you are prudent about taking care of things a long the way.

A crisis may manifest itself in many forms: panic attacks, self harm, suicidal thoughts among the most obvious.

Good communication is essential. Remembering that its not about you, don’t react to what you feel may be an attack. Rather, use active listening which helps your friend feel validated. “Take” the friend’s story and “hold” it so you can feel how it weighs the

person down. Be direct. Ask questions. Don’t worry about saying the right thing. Showing that you care and are concerned and that your shoulder can be leaned upon for support. Reach out to professional help as needed. But also know that your presence in your friends life may be all that is needed to get through this crisis.

There is so much loneliness, anxiety, depression and apathy in this disease.

. Just be present .

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 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 (541) 720-4256

4 thoughts on “Being there for a friend in crisis

  1. Just being present for the person ,you are so bang on
    We were at a celebration of life for a young woman killed on a motorcycle, I said to her husband I don’t know what to say, he replied your presence is enough.
    You and Charlie are doing an amazing job of helping people deal with a devastating disease, and I hope this is helping you too

  2. ”There is so much loneliness, anxiety, depression and apathy in this disease”

    So true and I’m really feeling it today. My fellow PD friends understand this but I hate to weigh them down with my bad day. Hope this too will pass.

    Thank you for your words.

  3. Thank you, Carol, your blog has helped me understand and communicate with my brother. I appreciate the information you are putting out there for us. May God be with you.

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