Dec. 19

Three annoying things:

There are a few social situations related to PD that irk me and I wonder if other PDrs are bothered as well.  Let me tell you about three of them and see if you can relate to my feelings.

Memory loss sharers:

My memory is beginning to fail me, at the moment in not very important ways.  A stranger wouldn’t likely notice.  For example there is a tree in our yard that I have known the name of for all my life, but frequently I can look at it, know that I know the name and can’t remember it.  (I remember it right now, it is Sumac.)  I have done some reading on PD memory loss and dementia and the percentage of persons with PD affected by it is very high as treatment time increases..  It comes, to a greater or lesser degree, with the territory.

My social situation happens like this.  At a certain moment I am unable to remember something and I say so to the person I am with, and may add that this sort of forgetfulness is happening more often.  The usual response is for the other person to say that they forget things as well, it is an age thing.  “We all forget stuff.”  Presumably this is to reassure me that I don’t have a problem that is any worse than other people and I shouldn’t be concerned.  To me it diminishes my reality - PD does have a very adverse affect on memory and it is a genuine and serious concern.

Weight lifters who insist on helping:

There are a few people in our social group who have a (to me) warped view of my physical abilities.  In the main, except for the occasional balance and shuffling effects of PD, I am in quite good physical condition.  I work-out regularly all year and work in the garden or shovel snow as the season requires.  As well, I am quite aware of my circumstances and if I am feeling overworked or overtired, I sit down for a rest.  If I can’t do something, I ask for assistance.

Heavy suitcases are my case in point. Our family can load more into a travel bag than can be imagined.  They are always at the maximum allowable weight – heavy.  Some individuals, however, who are smaller than I and do not train with weights, invariably insist that they carry the heavy suitcases.  Perhaps they have decided that at my age I shouldn’t lift things.  It is embarrassing and I protest but at some point it’s not worth arguing about.  It does bother me.

People who assume that poor voice equals poor brain.

There are occasional situations where, because I haven’t spoken very clearly, the other person I am talking with assumes that I am simple minded.  (No comments, please.)

My speech has been affected by three things.  First, PD affects aspiration and throat muscles, we tend to speak softly, and often speed up at the end of a comment.  Second, at the end of my open heart surgery I awoke with this piece of rigid plastic tube, about the size of a broom handle, sticking out of my mouth.  It was left in place longer than usual as there may have been the necessity of doing the operation over again.  This delay has made my throat extra sensitive and has affected my speech.  Thirdly, there has been a lot of dental work done in my mouth this past fall and at various times there have been sections of missing teeth and finally a new upper plate.  None of this has made me easier to understand.

There are several examples of shop clerks reacting to my less than perfect diction.  One, situation in a Nova Scotia Liquor Store, went like this:  As I got in the line to pay for a six-pack of beer I made some friendly comment to the man at the cash.  He immediately classed me as demented and said, very slowly, “Put-your-card-in-the-slot-at-the-bottom-there- (pointing)-and-enter-your- PIN- number.”  I paused for a moment considering an appropriate reply.  I did NOT answer but considered saying: “Stick-your-beer-in-your-ass,” equally slowly.  I paid and left.  This sort of response has happened a few times – I let it pass.

 

Dec. 13

My daily intake of Parkinson’s pills is timed at every four hours (7am, 11am, 3pm, 7pm & 11pm).  If I don’t forget, I try to make a mental note of my condition as the hour approaches and as my pills take effect.  Usually there is a small decline in how I feel and also in my walking and balance – a little more shuffling and a tendency to be aware of where I might need to hang on.  It is a dip in my overall wellbeing, but not very significant.

Today was different.  I was making some little wooden book-ends in my basement workshop and I got fully involved – no shaking, no shuffling, like no Parkinson’s.  Time passed and I was having trouble with the last one.  I put one part on the wrong way, the little nails I was using often bent and I had to take it apart and do a rebuild.  Finished, it was ok, but less neat than the others.  As I left the workbench, I realized that I was shuffling badly and was reaching out to steady myself.  Then I checked the time.  I had missed the 11am pill time by almost an hour.  Two hours later I was finally getting over my clumsy period. 

 

Interestingly, when I am working on a project, I don’t seem to notice what is happening to me.  The number of errors I made should have been a big clue and reminded me of my pills, but it didn’t.  I also had left my pill alarm upstairs.  Gotta pay more attention.

Dec. 9

Wabi-sabi

I’m not a religious person in any traditional sense, but the Wabi-sabi belief that there is good or beauty in an imperfect or damaged commodity comes close to my feelings about life.  This concept is current in Japan, although I don’t know how high its level of popular acceptance.

All of us are a “damaged commodity” to some extent and for those of us with Parkinson’s it is frequently obvious.  While I may work to avoid or delay medical problems I understand that the final outcomes are not up to me.  Wabi-sabi is the acceptance of reality.  An example might be, a person driving in heavy traffic and who is angry and impatient with other drivers.  A Wabi-sabi comment could be: “You are driving in busy city traffic, what did you expect?”

 

(My source has been the internet, but confirmed by friends in Japan.)  Wabi-sabi (侘寂^?) represents a comprehensive Japanese world view or aesthetic centered on the acceptance of transience and imperfection. The aesthetic is sometimes described as one of beauty that is "imperfect, impermanent, and incomplete".^[1] It is a concept derived from the Buddhist teaching of the three marks of existence (三法印, sanbōin^?), specifically impermanence (無常, mujō^?), the other two being suffering (苦, ku^?) and emptiness or absence of self-nature (空, kū^?).

Other interpretations:

 
Wisdom in natural simplicity

The aspect of imperfect reality

Flawed beauty

Nothing lasts, nothing is finished, nothing is permanent.

 

Wabi-sabi:  A way of living that focuses on finding beauty within the imperfections of life and accepting peacefully the natural cycle of growth and decay.

I’m trying.

 

 

 

 

 

Dec. 7

 

If you don’t mind suggestions, here are three that I am happy with:

 

1 A Recording Pill Case – from Amazon – just under $30.00.  I have never used the “recording” aspect, but have it set to ring at four hour intervals for my five pill times each day.  The ring isn’t loud and alarming, but can be heard a room or two away.  I carry it in my pocket.  Has worked great.

 

2 Applesauce:  Partly because of PD and more from peripheral damage done to my throat during open-heart-surgery.  Swallowing is sometimes uncomfortable for me.  I can take pills with water, but if they don’t go right down with a big gulp of water some liquid gets in my air-way and I choke.  With applesauce, never a problem.  The spoonful with the pills goes in, my tongue swipes it off and it is gone.  If you haven’t tried it, it might be worth investigating.

3 Great but unusual weather for December – like spring today.

Dec. 6

PD has me fooled again.  I felt good all day today but for the previous three days I have felt fine during the day but lost much mobility through the evening.  Pills were taken on time.  For some unknown reason, starting just before the 7:00 p.m. pills, and for an hour or more after, I shuffled around the house and had to catch hold of things to keep from falling.  My life was basically the same each day and I wonder if, by the evening, because I am getting tired, it is partly that, not just the PD that triggered the mobility problems.  I am sure that more sleep could help.  On the other hand I am a poor sleeper so change may not be easy.           

Dec. 3

Dancing with Death - Addendum

Since writing the original Dancing with Death, I have made a few more changes that have been of benefit.  Originally I was taking four Levodopa/Carbidopa pills each day (plus two Selegiline).  A small label on the early containers said they were to be taken with food.  My presumption was that they were very strong and needed to be diluted somewhat.  Just a month ago our Parkinson’s Society group had a visiting nurse, a specialist with PD.  Taking the pills with food was only until my body became accustomed to them.  I have been taking them after meals for five years and this included a snack taken at bedtime for the late one.

This meant that I got up in the morning low on dopamine and having a hard time shuffling around and not even trying to be happy.  Taking the pill after eating breakfast not only slowed down the medication, it lengthened the time since the evening pills to more than ten hours.  This has been changed.  I now wake up at 7:00 a.m., take my first pills and go back to bed for an hour, out of harm’s way.  By the time I get up, the pills have had a chance to work and I can get around almost normally.  

With four hour spacing there were pills at 7, 11, 3, 7.   Recently I also added, on my own, half a pill late in the evening.  After the second day I phoned the doctor to let him know what I had done and he approved the change and said it could be a whole pill (at 11:00 p.m.).  Although I may nibble something, the pills are no longer taken with meals, and are consumed well before breakfast and lunch.    

The change has been remarkable.  I now get up able to do most things with little or no mobility problems and I feel better.  The last evening pill, although taken eight hours before the start of the next day, seems to help.  It must leave some extra dopamine behind, probably because I am sleeping and not active.    

 

Adventures in the dark

There has been another major improvement in my day-to-day living.  Those who don’t like bathroom-function stories can stop here.

In addition to Parkinson’s Disease I also have prostate cancer.  One of the problems with prostate cancer is the need to pee more frequently than normally, particularly at night.  During the night my dopamine level is low and trip to the bathroom, a distance, bed to toilet, of 22 feet, is no fun.  With my cane in one hand, and the other reaching for support holds, such an outing could take several minutes and dozens of tiny steps.  The street light across the road and a tiny night-light in the hall give sufficient illumination for this snail speed trip.  There was always the chance of falling

These multiple night migrations went on for over five years.  Then, inspiration struck.  If it is a problem to go to the bathroom, why not bring an element of the bathroom to the bedside?  Brilliant.  We bought a small container which just fits under a table close by.  Now, rather than staggering and shuffling to the bathroom, I only move to the side of the bed.  I have the pot, a soft kneeling pad and I don’t go far from the bed.  I will let your imaginations fill in the details.  

Today is the 23^rd anniversary for Jan and me.  We acknowledge that we have a third member to our partnership: Parkinson’s Disease and both agree that almost everything we do is in the shadow of PD.  My walking or shuffling, to a large extent, limits when and where we go, as do pill times and the need to carry something with which to swallow them; my mood swings – both to happiness or depression are hard to predict.  On the other side of the coin, Jan experiences the consequences of my symptoms and cares for me as needed.  So far, if I am careful, I can do almost everything for myself, but PD isn’t going away and I am getting older.