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Donna,

Your Dad's situation sounds somewhat similar to my Dad (79/~9 mos.).  My
father was first tentatively diagnosed with PD last summer when he was
living in Florida, after 9 months of tests for heart and upper/lower GI,
which didn't show anything.  His GP at the time started him on
Carbidopa/Levodopa 3x a day.  The first day he experienced diarhhea and
much tiredness, then he seemed to get used to it.  But it wasn't making a
difference in his condition--loss of strength in his right arm, stooped
posture, shuffling walk.  That doctor up and died on us, so he found
another GP, who told him to stop taking the meds and immediately sent him
to a neuro.  MRI was done.  The neuro just said "It will get worse--get
used to it" and sent him home.  Naturally, we were kind of unhappy about that!

In January, Dad moved to Georgia to be near me.  Having been widowed about
a year ago, he was lonely.  Through this list I had learned about the
Movement Disorder Clinic at Emory and, with some sort of amazing luck, got
him an appointment with a neuro there mid-January.  This Dr. says Dad does
NOT have PD.  He thought it might be a brain lesion and sent him for
another, very extensive MRI.  That didn't show anything.  So, the neuro's
diagnosis was Multiple System Atrophy.  I think this is sometimes called
ParkinsonISM or Atypical Parkinson's.  The doctor again prescribed
carbidopa/levodopa, building him up over a 12 week period to 8x a day in
hopes that a larger dosage would have some impact.  Unfortunately, the same
side effects occured and worsened with each dosage increase.  Poor Dad was
losing it from both ends and when you can't move to the bathroom quickly,
that's quite a problem!  He called the neuro who suggested he take the
pills with meals rather than 1/2 hour before.  It didn't help.  Midway
through the 2nd week of 4 pills a day
he stopped taking them and the stomach upset went away.  Through all of
this, his PD symptoms did not improve, in fact we think they are gradually
getting worse.  He has had two rather bad falls.  He has yet to call the
neuro and report on his voluntary cessation of the medication, but we may
find ourselves going through the same routine your Dad has had with the
alternatives.

I don't have a whole lot of suggestions here, except to try and determine
if your Dad has "regular" PD or this other, similar disease which is not so
responsive to medications.  The neuro should be able to determine this
through examination and the MRI.  It seems the reflex responses are
different with PD and ParkinsonISM.  Also, my Dad is going to physical
therapy 3x a week and, while it's no cure, it does help with loosening up
the muscles, strength and balance.

Otherwise, I look forward to hearing from the list family with any
experiences and suggestions that might help both our Dads.

Best of luck,

Jane Koenig
Marietta, GA
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