A Parkinson's Metaphor

 3/21/16

I am often asked how I'm doing by friends and acquaintances who know I have Parkinson's.  While I am sure they care, I know that most of them don't really want an honest answer because it would make them uncomfortable.  This does not make them bad people, it is simply human nature.  So I say "I'm fine" or "no complaints".  When I do decide to try to share something real, more times than not I will get a response that attempts to minimize what I am telling them like "I have had that happen too - that's a normal part of getting old".  I guarantee that if you ask a PWP about their "pet peeves" this will be on the list.

Another factor is that it has become S.O.P. to at least try to project that things are under control, even if they're not.  At least part of the reason for this is that we (PWPs) understand that it is important to stay as positive as possible and to "not let PD own us".  Not only for our own sake but for the sake of our fellow PWPs, care partners, families and friends.

What would I say "behind closed doors" to doctors or other people we know who really are interested in an honest answer?  Because my dominant problem is mild cognitive impairment, my first reaction would be to try to explain how this has made life for me, and even more for my wife/care partner, more challenging. Obviously, I am willing to do this since I wrote a book on this subject (Window of Opportunity). However, my explanations are typically vague because, at this point, I can’t remember many of the details or examples.  

I am not sure what made me think of this, but I thought of an image that provides a good idea of the impact of this problem on my life.  It does not explain what is happening,but rather explains how I feel as a result of what is happening.  The image is that of“Wilson”, the volleyball with the blood-stain face that Tom Hanks becomes attached to in his movie Cast Away.  We can clearly see how distraught Tom becomes as “Wilson” is jarred loose from the raft and slowly floats away.

Projecting myself into “Wilson’s” predicament, I imagine the raft as “normal” and myself slowly drifting away.  “Normal” here is loosely defined because, like many with PD, “normal” is an abstract concept that changes over time until we no longer have a frame of reference for “true normal” pre-PD.  Regardless of what “normal” we are talking about, I am inexorably floating away from it.

So I have taken off my “game face” in order to try to describe, futile as it may be, what I and many other PWPs are going through.  I feel obligated to try.  The good news is that the PD world is now willing to address this subject and is doing so openly, a big change from the not-too-distant past.