I turned off my DBS today

Why did I do that?

Feeling crummy today. My ankles and feet are so swollen I cannot get my shoes on. I fell hard yesterday, on my back. I don’t usually fall on  my back. My trekking pole was not tightened and when I put it down and put my weight on it it slid out from under me. I was sore, but not hurt.

I gained some introspection. I have been with this disease, diagnosed that is, 13 years. I wonder if I am starting to go downhill. I know I am not getting enough exercise. How does one get enough exercise when they can hardly move!

So why did I turn off the DBS. I was doubting myself. I doubted if the DBS really gave me that much benefit. I am still taking lots of PD meds and it makes me wonder when the bad side affects will start kicking in.

What happened when I turned it off? Immediately after I turned it off my right hand tremored really hard. The left joined in. But then they both stopped tremoring and I was having some trouble swallowing my saliva. That was strange. And my body was very stiff. I had a really hard time getting off my bed and walking into the kitchen was like walking in knee deep cement. I stayed with these feelings for 15 minutes. Then I turned it back on.

I want to cry. But that would show I am weak. Or would it? Maybe my courage would actually shine through.

I must believe. I must believe in myself, in what I know will help me.

Today, it just wasn’t in me…the belief that is.

Tomorrow is another day.

Thank God.

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

12 thoughts on “I turned off my DBS today

  1. I had a somewhat similar day. My brain is getting worse. I need surgery ndxt week. I don’t know how much longer I can work, and we’re not ready for that kind of loss.

    You inspire me. We just have to keep on and believe in ourselves.

  2. Hi Carol, I am sorry to hear of your struggles and pain, I hope you didn’t injure or break any thing. You are not alone . You are such an inspiration to me and I am sure to every one who knows you. Just an idea , think of one thing that I makes your heart glad
    and I’m sure you do . Sending you prayers, love and hugs ! Janet

  3. I have bad days, too. I get through them by remembering that there aren’t just bad days. There are good days, too. I also look for beauty, especially in nature. Right now I am looking through my window at a beautiful ponderosa pine. The long pine needles are so gracefll! I lean toward the tree and now I see that there are 7 more pines behind this closest one! Did they pull up their roots and walk toward me to comfort me by sharing their beauty? Are they a support group for the one that has taken on the task of absorbing my suffering? Parkinson’s may be making me feel horrible, but I can still enjoy beauty. What a privilege and how wonderful it is to be shown this beautiful world! Every moment is precious. Perhaps I am God’s eyes and ears on this planet. It is enough for me to be a witness to beauty. I don’t think everyone appreciates that ponderosa pine as much as I do. I don’t need to save the world. I don’t need to discover a cure for Parkinson’s. I just need to observe the beauty that is in this world. That is enough.

  4. Ufta- Sometimes we have those moments where we need to challenge ourselves and find our new boundaries. What courage it took for you to turn of your DBS and sit with the totality of Parkinson’s for 15 MINUTES!!!! You are not alone. Each of us have miserable days regardless of our relationship with Parkinson’s. I’m grateful for your courage to share what it feels like to fully embody the highs and lows this movement disease. It must of been kind of scary to feel your secretions pooling!! I’m grateful for your DBS that so dramatically improves your function and maintains your high quality of life. Thinking of you!

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