Relationships

It weighs heavy on my heart, my dear friends and acquaintances who are challenged in their relationships due to the horrid disease process. After reading through hundreds of responses to a post on social media by a heartbroken man who experiences Parkinson’s I decided I needed to write it out.  (like, write it out of my system)

What happens to the loyal spouse when her mate of 30 something years drifts away into dementia from a degenerative neurological disease. She is lucky to get a day away now and then and recently visited my home.  Continuing to work provides for insurance and a break from everyday stress. He seldom talks but does express a simple thank you for a meal. She has taken care of all the necessary financial and legal responsibilities in preparation for the eventuality of his passing.  He mostly sleeps now. She misses his companionship and is lonely even when he sits across the table from her.  Admitting she is no longer in love with him, but still loves him and will honor their wedding vows “in sickness and in health until death does us part.”

A second person I recently spoke with is an attractive woman in her 60s.  Her husband divorced her years ago when she was diagnosed.  There have been other men in her life, but none was willing to enter into a permanent relationship.  As the disease progresses she is frightened for her future. Where will she live? Who will make important life decisions for her should she be incapacitated?  She doesn’t want to die alone. Who does?

The man who posted on social media, he was devastated.  After he was diagnosed with Parkinson’s his wife of 34 years filed for divorce.  As if this wasn’t enough, she attacked him with vicious comments “you are ugly, no one will want you” spewed from her mouth.

Linda Olson and her husband were driving a van that was stalled on train tracks. The train demolished the van and yet she and her husband survived. She was unconscious for days, awakening to discover both her legs and one arm had been amputated. She carefully planned the words she would say when she saw him, not expecting him to want her incomplete body.

His immediate comment was “I didn’t marry your arms and your legs … if you can do it, I can do it.” In the following days as they were recovering, they chose to focus on what they could do, not what they couldn’t do.  

Linda was diagnosed with Parkinson’s three years ago. Isn’t it enough?

Enough is too much.

Isn’t it enough that we have an incurable disease?  Isn’t it too much that our partners suffer from fear, from physical breakdowns?  They suffer so much that they lash out and mistreat us.

Linda and her husband made it through.  There are others who have too.

Please respond to this post with your thoughts about what happens to relationships when one of the partners has an incurable neurological disease.

 

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

4 thoughts on “Relationships

  1. I gave my 41 yo husband the opportunity to leave, but he was having none of it. He says he’s here for the long term, no matter what happens to me. I’m 61, almost 62. He works too hard now that I can’t work full time, but he’s chosen to stay with me. I’m very lucky. People who are alone, or are left after they’re diagnosed, I feel for them. I can’t imagine what it would be like. I see some of the same things you do, and I wish everyone could have the same kind of support I have.

      1. I do too. Why am I so lucky? I don’t know. Part of it is picking the right partner, of course, but one doesn’t ever really know how someone will react at these times even if one thinks they do. A twinge of guilt is okay, we merely recognize our good fortune, but it isn’t something we should feel guilt about. We do because we recognize that not everyone else is as fortunate as we are, and we have empathy for others. So not a bad thing in itself.

  2. Thanks for keeping the mud and guts of true love in front of us… the paradigm shift of moving from our often undefined ideas and expectations of what life is ‘supposed’ to be like wilt when the real turns and twists of life are realized. Your resolve and determination to keep what matters most in full view takes some of the sting out of the possible shock of what we don’t expect. This is where we live.

Please comment. I love to hear your thoughts!

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: