MORE OR LESS IS BETTER.  You Decide.

Advance warning!  If you are embarrassed by discussions of bodily functions, you may want to skip over this blog post.

People with Parkinson’s are well aware of the non-motor symptoms of the disease.  Let’s do a quick bulleted review to educate and inform everyone else:  

Motor Symptoms

·         Rigidity

·         Bradykinesia (slow


·         Tremor at rest



Non Motor Symptoms

·         Cognitive impairment

·         Dementia

·         Psychosis

·         Depression

·         Fatigue

·         Sleep disturbances

·         Constipation

·         Sexual dysfunction

·         Vision disturbances

·         Urinary Incontinence


Let’s address the very last non-motor symptom as it is one I have been challenged with:

Incontinence and urinary urgency. These may two are sometimes classified as the same. Incontinence is not being able to hold the urine in the bladder.  Urgency is when you head for the bathroom because you really have to go, NOW! PRONTO!! QUICKLY!!! 

These two symptoms have caused me more stress and concern than many of my other challenges.  Why is this?  As a small child I (and my parents) had to work hard to learn to control my sphincter muscles.  I needed to know when to hold ‘em, and when to let ‘em go, so to speak.  With that came a huge amount  of independence, which I have enjoyed my entire life since.  Well, up to now.

It seems as if I need to visit the bathroom every hour.  This is not always convenient such as when I am off on a bike ride or camping away from a bathroom.  When I feel the “urge” to go, I head as quick as my body will move to the bathroom.  Opening the door and seeing the toilet brings it on!  This phenomena has been reported to me by other women.  The toilet seems to have a remote control, maybe even a blue tooth connection to the bladder. Heaven forbid if I can’t get my pants down and myself turned around to the toilet because there is no stopping it!

I have only had a few instances where I have totally lost control of my bladder.  The warm stream of fluid down my legs and filling my shoes was not pleasant. The most recent occurrence happened to be in Japan, at the conference hall where I was attending the World Parkinson’s Congress. 

During the afternoon session, I felt very fatigued.  The conference organizers knew this might happen to people with Parkinson’s and set aside an area for rest and rejuvenation.  I found a mat in a curtained off area, took my shoes off and fell instantly asleep.  I was having a dream about needing to go to the bathroom and it woke me.  BING BING BING my bodily alarm went off.  Toilet Oh toilet where are you?  I didn’t bother to put on my shoes (in anticipation of them getting filled with pee anyway) and ran  (as if I can run) around the corner, down a set of stairs and into the woman’s restroom area which consisted of individual floor to ceiling stalls.  As lectures were going on, thankfully there was no line at the rest area.  I grabbed the door of the nearest stall opened it and there it was.  THE TOILET.  This was not just any toilet, but a fancy Japanese toilet with all the bells and whistles.  Seeing this extraordinary porcelain thrown set off my bladder control unit and the flood began.  You would have thought I drank two gallons of water. It just kept coming, soaking my tan-colored cotton pants, underwear and socks, as I was smart and left my shoes off.  Smart.  Right.

 Now what was I going to do?  There was no way I could sneak out of the building unnoticed.  There was no way to call Charlie.  And what could he do to help anyway. I WAS NOT going to open the door to the stall as the floodwaters were deep enough to leak out.  And then I remembered the multi-functionality of Japanese toilets. 

The first button I touched on the toilet gave me the sound of some nice calming birds tweeting away.  I got a grip and gathered my thoughts. I had already removed the bottom half of my outfit.  There was another button on the toilet that indicated spray.  From the diagrams, I could choose a front spray or a back spray.  Glad that it was not me getting sprayed, I put my clothes in the toilet and utilized the front spray to rinse them.  I squeezed the water out as best I could and rolled toilet paper on them to absorb as much liquid as possible.  I looked at the diagrams on the toilet for any other options that might assist.  AH HAH it had an air blower.  The air was one-directional, but I managed to keep it going with one hand while holding my pants with the other hand.  Within approximately 30 minutes I had dried my underwear enough to wear them and my pants looked dry.  I noticed I had completely forgotten about my socks.   Being fed up with this entire situation I looked around for a garbage can.  They went in the little bags supplied for feminine hygiene products and into a tiny swinging door on the wall of the stall, never to be seen or smelled again, I hoped.  I carefully stepped over the puddle and in bare feet went to the sink to wash up.  I caught a view of my pants in the mirror.  They could have used a little touch up with an iron, but I don’t think the bathroom at the convention center was the place to find that.  On the way to the relaxation and rejuvenation room to get my shoes and bag, I pinned a big grin on my face and nodded my head to anyone I met.   I had a secret  that only I would know.  Japanese toilets are multipurpose units, only limited by the user’s imagination.

I have been careful to not drink soda, caffeine or alcohol after about 5 pm as these things seem to be instigators. I use the bathroom regularly and especially when I know I will be away from it for more than an hour.  I have found some discreet panty liners to help slow the flood if that should ever happen again. I may not be able to control my bladder urgencies, but I can control actions to eliminate (no pun intended) some of the challenges presented by this non-motor function of Parkinson’s 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 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

One thought on “MORE OR LESS IS BETTER

  1. Hi Carol…..yes yes yes….I can identify with your loss of bladder control. It isnt a pleasant experience either! My urologist has put me on 3 drugs now…Vesicare, Betmiga and Epitherine. If they don’t work then he spoke about injecting botox into the back of my bladder to try control the urge to “go”. I never thought I would be a botox babe but at least my bladder won’t have wrinkles! Hahaha!! Thankfully the combination of drugs seem to be helping and no real panic moments unless I don’t empty my bladder after a glass of water/drink/cuppa tea etc….

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