On the list I received on 9/16, was this post:
<Date: Thu, 15 Sep 1994 16:42:54 -0700
<From: Andrew Shubin <[log in to unmask]>
<Subject: PHILADELPHIA
<I would like the name of PD specialists in the philadlephia
<metro area. While I am aware of some of the more
<research-oriented PD specialists, I am particularly interested
<in physicians who understand PD but are better able to provide
<more personal, accesible and aggressive day-to-day care.
And I would like green eggs and ham. There are neurologists
who are attentive, understanding, empathetic, personal,
accessible and aggressive, but I've only met one who fits this
category. If you scratched them very hard, neurologists are
excellent detectives, a wonderful match for a group of patients
who have all different constellations of symptoms. When you look
at the confusing array of presentations, it is little wonder that
we ever get a proper diagnosis. But it seems like you are asking
for a primary care physician - surely they fit your profile
above. Primary care can be done by a family physician, a general
practitioner (yes, a few dinosaurs exist), a general internist,
or a general neurologist.
These doctors, versus a parkinsonologist, are the best level
from whom to recieve care on a day-to-day basis. They are better
suited to repetition of instructions, puzzling out side effects
and consulting with the doctor higher on the rungs of the
referral ladder. Unless there are problems necessitating
referral, use the doctor closest to you, your primary care
provider, first. As an example, one of our members who should
have known better, called the PD superspecialist about her
constipation. Now the superspecialist did not reprimand her for
"wasting" his time, but she could have handled this discussion
with the nurse practitioner at her Kaiser clinic.
You may be able to find a PD specialist who is all that you
want, but my advice is not to hold your breath. Be your own
patient advocate, be assertive, clear, persistent. Don't be
surprised if a specialist is distant emotionally - if he/she
could have handled primary care, thst would be where she would
have been. (We've never started a list of absolutely wonderful
clinicians - maybe we should.) Peace, Don Penny
