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---------- Forwarded message ----------
Date: Sat, 11 Nov 95 15:43:00 EST
From: Monica Burke <[log in to unmask]>
To: [log in to unmask]
Subject: my parkie dad
 
  Hi Barb,
 
  It's great to hear that you feel all your work to maintain the list is
  worth it - I ceratinly think so!  I mostly lurk on the list, but find
  much of it helpful.
 
  You asked us for our stories.  I subscribe to the list because my dad has
  PD.  He was diagnosed in 1988 or so, at age 55.  We suspect he'd had it
  for a while, becuase the driving trips to visit me at college 6 hours
  away had become increasingly uncomfortable for him.  He would have to get
  out and stretch every hour or so.  Mom is a nurse, and suspected it
  before the diagnosis.
 
  Luckily, he was able to become a patient of Dr. Duvoisin in New
  Brunswick, NJ, not far from where we live.  He soon after became a
  patient of Dr. Margery Mark at the same center, and she is terrific.
  Interesting features of his diagnosis are that his father may have had a
  mild case of PD, and later we learned that his older brother Bill has it,
  too (he has five brothers and one sister.)  Bill does not see Dr. Mark,
  however.  Dad's also had two severe psychotic episodes related to Permax.
 
  Of course the diagnosis itself was a shock, but the worst of it has been
  lately, as Dad's cognitive loss becomes more substantial.  He had visited
  Dr. Kelly at NYU for a shot at qualifying for a pallidotomy.  He couldn't
  tell the doctor what a quarter, a nickel, and a dime add up to.  He was
  rejected because of this kind of permanent disablilty - pallidotomy can't
  help him.  It breaks my heart to see him become so - - inconsequential,
  if I can use such a cruel word.  He was "The Dad," who we all looked to
  for sage advice, and who Mom counted on to pay the bills and all the
  "Dad" stuff.  Now he is "off" most of the time, with his eyelids forced
  shut quite often, feeling terrible.  When he is "on," he is confused, he
  interrupts conversation and contributes barely relevant or even
  nonsensical dialog just to have something to say.  It's like having a
  three-year-old around constantly interrupting the adults.  Of course we
  all hate ourselves for becoming annoyed at it.  What I dislike most is
  how he works my mother like a pack mule.  He won't let my brothers or me
  help him or get him something, he always wants Mom.  Sometimes I tell him
  I'm not going to call Mom, and he'll have to tell me what he wants.
 
  So anyway, our struggle has been mostly with tolerating changes which we
  know he can't control, and masking our exasperation.  I wish there was a
  way to become more "saintly" about this, but it is a trial.  I live three
  hours away, and am thinking of moving closer to at least help get Mom out
  of the house for a few hours.
 
  Thanks for listening,
  Monica