hi all

At 22:35 1999/07/16 -0500, nina wrote:
>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)
>
>*************
>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.
>
>***************

imho
an excellent article
bravo!

>WHY IS IT SO HARD TO MOTIVATE PEOPLE TO HELP THEMSELVES?

imho
fear.
denial.
fear.


janet

janet paterson
52 now / 41 dx / 37 onset
snail-mail: PO Box 171  Almonte  Ontario  K0A 1A0  Canada
website: a new voice <http://www.geocities.com/SoHo/Village/6263/>
e-mail: <[log in to unmask]>