The Ribbon of Road Ahead

                                                           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

      movements)

·         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.