Thought I would share the following message that will appear in the
Parkinson Foundation of Harris County's August newsletter. Following
that is a short talk I gave at our monthly meeting today to vent my
frustration.
My husband, Joe, and I returned from a tiring, but I hope successful
trip to Washington, D.C. where we attended the 1999 Public Policy Forum
presented by the Parkinson's Action Network (PAN). From Invisible No
More, the focus changed to Raising Our Voices for a Cure. We practiced
advocacy skills, heard political and research presentations and knocked
on doors.
In 1997, after four years of advocacy efforts, the Morris K. Udall
Parkinson's Research Act was signed into law authorizing the National
Institutes of Health (NIH) to fund up to $100 million in “research
focused on Parkinson's disease.” As of this date, the Act has not been
funded and much of the research has not been “focused.”
In an attempt to rectify this, we personally met with Senators
Hutchinson and Gramm's offices. In addition to various Congressmen and
women, we visited with the chief of staff to the Chair of the
Appropriations Committee in the House and the domestic policy advisor
for Vice-President Gore.
We heard from scientists all over the country on the latest research.
The experts continue to tell us they could find a cure if they had the
necessary funds. As in the past, we left feeling optimistic although
with somewhat heavy hearts, full of frustration with the knowledge that
if we had a hurricane or other natural disaster, our government would
find the money to offer relief. Why isn’t it considered a disaster that
every nine minutes another person is diagnosed with this devastating,
debilitating disease?! With the estimated costs of Medicare,
disability, lost wages, etc. to our country, there is not a more
compassionate, more compelling, more economical way to spend our tax
dollars.
That’s why it is so important to raise your voice for a cure! Please
call me if you would like more information to help convey your message
when you write, call and visit your representatives.
Nina Brown (713-218-8888)
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If you don’t know me, my name is Nina Brown. I write the newsletter and
am a positive, upbeat person. I spoke with someone yesterday who had
been diagnosed within the last 3 years. He told me he could handle
having Parkinson’s and didn’t want to think about the future. The good
news is that Parkinson’s usually progresses slowly. The bad news is
that, by definition, it’s a progressive, debilitating disease.
I don’t want to frighten those of you who are recently diagnosed. I was
diagnosed 12 years ago. I could handle it then and I can handle it now,
but it’s more difficult now and I know it will be more difficult later.
For many years, Morris K Udall was a prisoner within his own body…no
different than people with polio who lived their lives in iron lungs.
They could handle it because they had to. The public was more
frightened of polio because it usually affected the young rather than
the elderly. When we were in Washington we met a beautiful young girl,
engaged to be married, who had been diagnosed with Parkinson’s disease
at 24 years old and she was already wearing a deep brain stimulator.
Research was allowing her to function. Watching the ravages of polio,
the public demanded a cure. Now, iron lungs are a thing of the past.
Parkinson’s is the most curable of the neurological diseases.
Scientists tell us with enough funding; Parkinson’s can also be a thing
of the past.
But it won’t happen if you don’t want to think about it and don’t help
make it happen. To those of you who can function almost normally now,
this is the time to put forth an effort to help find a cure. To those
of you whose days are more difficult, you can still make a phone call to
your representatives in Congress, take a Pennies for Parkinson’s can to
your doctor or drug store or convince someone who cares about you to
help in the search to find a cure for you or your grandchildren.
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WHY IS IT SO HARD TO MOTIVATE PEOPLE TO HELP THEMSELVES?
