To Robin Elliott, Melinda Brown and others,
Following Barb's example I re-read the Parade magazine article, and
I do see now that in subtle ways the author does depict the toll
Parkinson's Disease has taken on his life. Definitely it is important to
increase public awareness, and it is great to hear that NPF received so
many inquiries. Perhaps the door willl now be opened for additional
publicity. I didn't mean to criticize people that I know are
working very hard, and I should have taken some time to reread the
article and think about it first, rather than just posting my immediate
reaction. I think the article did serve the purpose it was intended to.
However, I still worry that we are sending out contradictory
messages. For the last three years, we have been telling the
politicians and anyone else who would listen, about the terrible toll PD
takes on our lives. We've complained about how underfunded Parkinson's
research is, that $100 million dollars is needed if a cure is to be
found. That the NIH is not funding PD research at the level it is
supposed too. That promising research is going unfunded. Our supporters
in the Senate - Senators McCain, Specter, Wellstone, Cochran and Craig
clearly conveyed these facts in the Senate Appropriations Report. But I
think most people reading Parade would conclude that with so much
progress being made - there is no funding problem. Why do we need so much
more research money
with all the new drugs and surgical treatments now available? People are
doing so much better now, aren't they? It would have helped to include
some facts about the funding issues as well.
I suppose part of the problem is that the media oversimplifies
whatever it reports, and this is such a complicated issue. About a year
ago, there was a wonderful program on PBS by Morton Kondrack (I'm not
sure of the spelling.) dealing with the controversies about medical
research funding and focusing on his wife who has Parkinson's. It so
powerfully depicted the effects of PD on patients
and their families. In my area though, the program was broadcast on a
Sunday afternoon (probably opposite a football game), and I doubt that
many people saw it. Yet whenever a short, sketchy report appears on the
TV magazine shows, or the evening news, or in the newspaper about some
"new, miracle" treatment for PD (usually not so new, and definitely not a
miracle ), I know I'll receive a call from a well-meaning friend
tellling me the "cure" has been found.
I can understand the author's desire to be as positive about life
as possible, in spite of this disease. Indeed most of us probably answer
"we're fine," when asked how we're doing. I am at the beginning of this
journey, and generally am okay. But I think of all the letters I've read
from our list members who are not fine, who are struggling as their
disease progresses, who are forced to stop working when they are 40 or 50
years old, who have difficulty caring for their children, for whom even
the new medications don't really work, and I wonder why is it so hard to
get their stories told as well.
I don't know if there is any answer to all of this. I suppose the
Parade article is a start, and hope we will go on from there. I apologize
if my letter insulted anyone. However, I still insist that the words "
lucky" and "Parkinsons' Disease" do not belong in the same sentence.
Linda Herman
