Friday, December 7, 2012

Adapt, Adopt and Ad Lib

Life with Parkinson’s disease demands a great deal from its captives.  To avoid being sucked into the deep vortex of despair, swallowed by self-pity, banished from normalcy, we must be able to adapt, adopt and, when all else fails, ad lib. Let me explain.
5555.  There was no particular reason to choose that number, except perhaps that it was located in the middle of the screen of my iPhone, within easy reach of my slightly more reliable left thumb.  It also solved a developing difficulty.  My normal 4-number password required dexterity I could only rarely display.  I know, even healthy people have difficulty typing in their password correctly some of the time.  But multiply that times 10, along with the resulting exasperation and sense of ineptitude, and you have someone dealing with Parkinson’s disease.  Trying to unlock my iPhone one day in the presence of my friend, Carson, I explained my problem.  “I either hit the wrong button or, more typically, the right button too many times!”  This tremor-induced typo would result in the bold message, “Wrong Password.  Try again”, emblazoned across the top of the screen.  After the third or fourth time of being reminded how uncoordinated I had become, frustration, even anger, bubbled to the surface.  Stubbornly failing over and over again seemed unavoidable until my friend said, “Why don’t you make it same number.  That way you can hit it any number of times without getting a failure message flashing at you."  Painless adaptation.
It was 12:38 AM.  As usual, I had been able to fall asleep easily, but this time, as I had a few times before, I awoke after what amounted to a short power nap.  My right leg was throbbing and stiff, while my right arm seemed to compensate by shaking uncontrollably.  How do you ignore that disobedient duo, one cramped, the other flopping about like a flag on a brisk fall day. It was impossible to rest or to return to sleep.  I got up.  For a few minutes I walked aimlessly around the bedroom.  It seemed to provide some relief.  Fearing I would wake my wife, I found myself wandering around the house.  On one of my circuits I noticed the dusty treadmill in the corner of the TV room.  I remembered my wife suggesting I could use it to walk off my restless leg syndrome if it was too wet or cold walk outside.  In a few minutes my feet were hot from striding along the moving belt (I know, you are not supposed to go barefoot on a treadmill).  The cramping muscles began to loosen up and my shaking right hand calmed down considerably.  Within 20 minutes I was ready to head back to bed.  I adopted a new strategy.
Over the last few months I've learned to eat with my left hand. Ad lib. Improvisation.  Spontaneity.  Call it what you will, these words enlist our imagination, suspend our disbelief to allow us to reach for things we have never seen.  For most adults, creativity is a frightening exposure of the child within, the raw reality hidden deep in our souls.  People with Parkinson’s can easily feel chained down by their ever-expanding list of disabilities.  We sense the insidious and endlessly reminders of the disease as if it were an incessant tap, tap, tap, tap on the shoulder.  PD demands attention, insisting upon repetition; pills, therapy, rest then more pills.  But its boring refrain can be silenced from time to time.  When was the last time you tried something different?  Took a walk in the rain?  Drove home the long way?  Wrote a poem?  Asked a person about his or her tattoo?  Ordered something off the menu you had never eaten before?  Allowed yourself to make a frivolous, spontaneous decision?
Most of us are people of repetition, habits ingrained over the years.  Let’s face it, it works…for the time being.  We often suffer from narrowness of vision, shrinking horizons, and…well…boredom.  We could all use an attitude adjustment.  Let's be prepared to adapt, adopt and ad lib.


  1. Bob, I am first time visitor to your site and two years post-diagnosis (if we discount the months spent in denial). Thank you for your thoughtful, articulate postings. They challenge and inspire me to think more deeply about what this journey means to me and those who love me. Oh dear, so many first person pronouns....

  2. I know it has been a long time and no reply but I could not pass this by. You are so on the mark today, Bob. At the moment I am fighting hard just to make it day to day though I am walking mind scares me at times. I have always been a free spirit and there are fewer and fewer places for us ya though, Pokie

  3. Another great post Bob. PD is not easy..... Please keep on writing.....

  4. We are new to Parkinson's just being diagnosed in May 2012. Your column was refreshing. Thank you

  5. I have a friend who has PD and she is the type who throws herself wholeheartedly into any endeavor she starts. She was teacher of the year in our district about 4 years ago and then was sort of forced to retire the next year by a young principal who didn't understand the PD diagnosis.

    This lady didn't let this stop her. She started tutoring at other schools that had principals who remembered her as an outstanding teacher and who were mature enough to look past the visible symptoms. So this lady read everything written about PD and tried all the things she was reading about. She is now the first PD patient to be president of the local support group.

    But I divert - about a year ago she was on vacation up north and went to a professional baseball game. Her tickets seated her next to a very nice young lady who happened to be a PD doctor at a major hospital. She noticed the symptoms in my friend and they bonded. One thing she said was that no medicines, or other therapy would do as much good as just riding a stationery bike. So my friend went home and started riding, and she has felt so much better and her PD has not progressed as fast as it was moving. So she adapted, adopted and ad libbed and seems to have found what works for her - all from a chance meeting at a ballgame.