There is no way to truly know how many people have Parkinson's without a
registry, and that is not welcome to many. So many become invisible(Joan
Samuelson's famous ("Invisible No More"), her theme for years, as PAN founder. We
began with 50 dedicated advocates 20 years ago,.and have progressed to the
huge organization we have now.
People gravitate to their sanctuaries when the disease progresses that far,
and we loose contact, they pass away, either from Parkinson's or something
else. They may have never seen a Neurologist, only a GP with little
Parkinson's experience, though, some are very informed. I have done presentations at
hospitals where doctors have commented, "I wasn't aware of that". Then you
deal with Hippa laws and information cannot be given out. Support groups
can't contact them, only if the doctor recommends a group......
Gerry
Chairman, Lehigh Valley Support Group and Chapter -NPF and
Pennsylvania State Coordinator.
Parkinson's Action Network
"Do something good for someone you least like today."
St. Anthony of Padua
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