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.