Pilgrims with Parkinsons ?

rose 2Yip…. one becomes very open and honest with fellow PWP!! We understand one another!!
~Rose Meynell Bishop, Johannesburg S.A.

When I meet a Person with Parkinson’s (PWP) there is an instant feeling of connection. Before long I have shared my diagnosis date, my outward symptoms, medications and how they are working and she has shared hers.
So it happened with my new friend Rose Meynell Bishop. I was reading posts on a Facebook page designed for women with Parkinson’s when I saw Rose’s post about walking on the Camino de Santiago. Immediately I messaged her and we jumped right into the deep end with our conversation.

Before I continue with Rose’s story, here’s a little introduction to Parkinson’s for those not familiar, and a review for the rest of us:
Outward symptoms noticeable to the PWoP (People without Parkinson’s) are mostly motor movement based. Tremors in the arms and legs, stiffness and rigidity, stooped posture, slow shuffling steps, very soft voice, flat “affect” to the face, strange jerking or movements of the body, balance issues and falling are just some of the issues faced.
Parkinson’s disease cannot be cured, but medications can help control symptoms. In some later cases, surgery may be advised. Here is the list of major medications:

• Dopamine precursor: Drug which can pass through to the brain and readily get converted to dopamine. Helps in managing Parkinson’s disease.Levadopa.

• Catechol-O-methyltransferase (COMT) inhibitors: Inhibits the action of catechol-O-methyl transferase an enzyme which is involved in degrading neurotransmitters. Entacapone, Tolcapone, Opicapone, Nitecapone

• Dopamine agonists: Activates dopamine receptors and helps in managing the disease. Bromocriptine, Pergolide, Pramipexole, Ropinerole

• MAO-B inhibitors: Increases the amount of dopamine in the basal ganglia by inhibiting the activity an enzyme that breaks down dopamine. Safinamide, Selegeline, Rasagiline

After my new friend and I have compared these notes the conversation goes deeper. We talk about the most personal of the symptoms, the non-motor issues which most people without Parkinson’s don’t see, don’t know about and have never experienced. These include disturbances is smell, sleep problems, depression, anxiety, psychosis, hallucinations, urinary incontinence, constipation, sexual concerns, fatigue, cognitive changes, weight loss, excessive sweating, melanoma, visual concerns. The list goes on.

My deep-water conversation with Rose went to her immediate concern of dealing with urinary urgency and constipation as she walked on the Camino. As if these two ailments are not difficult enough at home, dealing with them as one walks through the Spanish countryside is unimaginable. Bathrooms are not readily available. Smaller villages may not have farmacias where incontinence supplies are available, and then, there is always the language and culture barrier.
I am a problem solver. Of course, I am not going to solve Rose’s non-motor symptoms of Parkinson’s. Yet, I thought about what I would do if I was in her situation.
We chatted online in that 9-hour difference between Northern Spain and the west coast of the US, where I live. We talked about using google translate to communicate with the pharmacist. For me, alcohol, carbonated beverages and caffeine make my urinary issues more challenging. For Rose, those were the exact beverages that resulted in less urgent problems. Since it was very hot in Spain while Rose was out on the Camino, she had to have lots of fluids. I suggested she make those fluids count by drinking AquaArius, a European sports drink and having some salty snacks during the day.

Rose completed the Camino and by her report spent some time in the square where she cried about her accomplishment.
Its an accomplishment for anyone to complete even a segment of that walk. Add Parkinsons disease to that pilgrimage challenge, and the fact that she walked solo, and you have a journey to be proud of.
Buen Caminorose 1rose 2

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

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