We have, our APDA chapter here in Tucson, developed a good relationship
with our local (morning, and liberal) paper. This editorial was done
because the editorial people felt that their own local PD news piece,
jump-started by MJ Fox's announcement, didn't go deeply enough into the
problem.
I spoke with the writer of this piece for 50 minutes. She is very
inquisitive, and very understanding. Her 71 year old mother has
Parkinson's.
But she was apparently confused between "authorization" and
"appropriation." Later this week my response to that confusion will be
published, either as a letter or an op-ed piece. I will forward it to the
list.
I could have let the semantics issue pass - who the hell cares about the
difference between an "authorization" and an "appropriation?"
But differences and distinctions like that CAN make a difference!
Letters to the editor, building a relationship with your local press,
bringing issues forward for public scrutiny, can bring public attention to
Parkinson's disease. That, of course, doesn't guarantee more research
funds, or that a better therapy or cure is around the corner. But it does
keep the disease in the public's eye, and develops a public awareness, and
sympathy.
And that is useful.
Bob Dolezal
Parkinson's emerges
Sunday, 27 December 1998
COMMENT 2F
THE ARIZONA DAILY STAR
Tucson's beloved Mo Udall died a long and sad death. Though his final
years were as
comfortable as a nursing home can be, his end was one neither the
Parkinson's victim nor the
family should have to endure.
The thing is, the time he spent in a vegetative state is not at all
unusual for people who suffer
from the debilitating disease. In fact, with the logical progression of
the neurological disorder,
Parkinson's victims know they are doomed to slip into the same vegetative
state that eventually
took Udall.
News accounts describe Parkinson's as a disorder characterized by tremors
and stiffness. But,
in some cases, it is so much more painful and debilitating.
In fact, it is a progressive disease that robs sufferers of youth and
energy. The sometimes
uncontrollable tremors cause much of the pain associated with the disease.
What's more, some
of the medications induce side effects that are just as debilitating, if
not more, than the disease.
Udall's misfortune, though, has become the rallying point for Parkinson's
disease sufferers.
With the Udall name on a bill, Congress authorized $100 million for
Parkinson's research. The
authorization elevated the disease to its rightful status among the more
researched diseases in
this country. And it offers some hope for victims of a malady that had
largely been ignored,
despite the large numbers of victims.
Perhaps one of the most encouraging signs emerging from Udall's misfortune
is that
Parkinson's is becoming a more recognized affliction. His name is among
the growing list of
high-profile victims that includes Katherine Hepburn, Janet Reno, Mohammed
Ali and Pope
John Paul II.
Actor Michael J. Fox is the latest name to be recognized. For advocates,
the actor's addition to
the victims' list has the advantage of striking down one of the most
crushing mistruths about
Parkinson's - that it is an old man's malady. Nothing could be further
from the truth. Fox is
not the first, nor will he be the last, active thirty-ish adult to be
struck nearly immobile by the
disease.
The past few years have seen advances for advocates and victims of
Parkinson's disease. The
growing awareness among the public has been bolstered by the congressional
authorization for
research. That money should go a long way in finding help - maybe even a
cure - for the
cruelty that Parkinson's inflicts on its victims.
In Arizona and around the country, Udall will always be remembered for his
conservation
work. He'll always be remembered for his good humor and sharp wit.
But this kind and compassionate man had even more room to help others.
Long after he graced
the halls of Congress, Mo Udall will also be remembered as a man whose own
pain and
debilitating illness helped us all see the need to end the suffering of
Parkinson's disease.
EDITORIAL DISEASE RESEARCH
