a view of pd

[Sid Roberts <sirobert@xxxxxxxxxx>]

          As with everybody else who has recently been diagnosed with
Parkinson's disease ( 4  months ago but with symptoms for a year and a
half), I am angry, depressed, anxious, and pessimistic about the future.
I have read a good deal about parkinsonism, have a knowledgeable neurologist,
take my medication (elederpryl, sinemet cr 25/100 and sinemet cr 50/200),
exercise daily, and read this list religiously.  Too frequently, however,
what one reads here are worst case scenarios, negative prognosis, and
accounts of debilitating medication side effects.  Not to disparagput
down the very important role of this net list and its contributors, but every
once in a while those of us in the early stages of PD could use an encourag-
ing word or two.
          To that end I'd like to emphasize the idiosyncratic and non-
linear nature of parkinsonism.  While PD is currently incurable, everyone's
symptoms are somewhat different.  Debilitation is a matter of degree.  Some
people have the same symptoms lasting for a number of years rather than have
a  condition that rapidly declines;  some parkinsonians remain outgoing while
others become reclusive.  Although 'the future' for us 'aint what it used to
be' it is important to be positive and keep in mind the fact that no one
can predict with any certainty the route that pd will take in any individual.
Jon R. Pierce in his book LIVING WITH PARKINSON'S DISEASE OR DONT RUSH ME!
I'M COPING AS FAST AS I CAN (1989) attests to this point emphatically when
he writes:
         The worsening of Parkinson's disease symptoms in my own
         experience and with others with whom I have compared notes,
         does not seem to be a linear decline where there is a pre-
         dictable loss of capabilities each year.  Rather, it seems
         that the disease progresses through any number of plateau
         intervals, inspersed with sometimes percipitous declines
         which can be set off with trauma, stress or uncertainty.
         One would expect that once a level of competence has been
         lost it would be gone forever.  Again, in my experience, this
         is not always the case. (13)

David L. Carroll in his book LIVING WITH PARKINSON'S:A GUIDE FOR PATIENT AND
CAREGIVER (l992) makes the same point of uniqueness of PD's symptomatic
impact even when he discusses 'The Five Stages of Parkinson's Disease' and
the 'Hoehn and Yahr Scale.' (51-54) which he describ 'an approximate
guideline, not a prophecy.  Despite its neat numbered stages, the experience
of innumerable PD patients demonstrates that there are many gray areas
between each stage, and that there is much room for variation, improvement
and surprise.' (54)

Hope this view is as important to others as it is to me!
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          |  Sid Roberts              sirobert@xxxxxxxxxx    |
          |  Youngstown State         History Department     |
          |  University               Youngstown, OH 44555   |
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