Parkinson's Disease IS scary and depressing. You tell it like it is,
Marling. I applaud this piece whole heartedly. (I was also under the
potentially mistaken impression that PD research was including the
reproduction of stem cells. This directly relates to a number of other
afflictions, among them spinal cord injury. Could this idea? fact? premise?
bolster your already excellent argument?)
Barb Rager
-----Original Message-----
From: Marling McReynolds <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Wednesday, July 22, 1998 8:06 AM
Subject: letters to the editor
Hello folks,
My son says the following is too depressing and downright scary.
What do you all think??
WHAT WILL YOU DO WHEN YOU ARE DIAGNOSED WITH
PARKINSON’S DISEASE?
The odds are you WILL have PD someday.
The odds are pretty good that you will have Parkinson’s Disease (PD)
someday. Why do I say this? Researchers have found that 1% (at least)
of people who reach or pass 60 years of age have PD. Some researchers
believe that PD may be age related, however this does not explain why
the average age for diagnosis is now 57, with 10% or more of the 1-1.5
million people in the US with PD being under age 50. Also the annual
incidence is approximately 20 new cases per 100,000 people, with the
prevalence at 200 cases per 100,000 or 0.2% of the population.
When your rigidity of limbs or neck, and/or tremor, and/or slowness of
movement, and/or loss of balance show up and you go to the doctor, you
will have been suffering for many years without knowing it. And when
diagnosed, if you have “idiopathic” PD, you will probably have 10 to 40
years of misery to look forward to as this disorder slowly eats your
ability to care for yourself. On the other hand, if there is a mixture of
the
main symptoms with other problems and a rapid increase of difficulties
with disability occurring within 5 years or no response to levodopa, then
you have Parkinson's Disease Plus (PD+). PD+ includes several
disorders with not only a lose of the substantia nigra in the brain, but
main changes occurring elsewhere. Or, maybe you will have one of the
Parkinson's Syndromes (PS) which have known causes and variable rates
of progression. On the other hand maybe you have been doing legal or
illegal drugs, which includes (among others) Thorazine, Prolixin, and
Haldol as well as Reglan and Compazine, and those containing MPTP
(Demerol for example). These all cause PS and all of these except the
last (MPTP) are reversible. So much progress has been made in
searching for a PD cure that having one of the PS types is no longer such
a scary thought.
All of this sounds very discouraging. However, there is real HOPE.
Back in the early 90’s researchers, doctors, and others got together and
looked at the developing therapys and models. They determined that if
the National Institute of Health (NIH) would make a concentrated effort
in partnership with the private sector, a cure could be found in 3 to5
years. This was not a weak guess. These experts looked at all that was
being done, took projections from private hospitals and research
facilities, considered how much money the private sector could and
would put into the research, and determined that if the NIH would put one
hundred million dollars ($100,000,000) per year for 3 to 5 years into
concentrated PD research we would have or be very close to a cure. Not
another surgery or drug to relieve symptoms for a short time, but a
CURE.
Thus was born the Morris Udall Bill, which passed both Houses of
Congress and was signed by President Clinton. However, even though
the money was approved, it was not appropriated, and now we have a law
which could help, but has no money behind it. In order for the miracle to
happen, Congress and the President must pass the appropriation and tell
the NIH that a cure for Parkinson’s Disease is a priority.
The Udall bill was passed because experts like Dr. Abraham Lieberman
and people with Parkinson’s (PWP) such as Muhammad Ali have testified
before the Congress, as well as thousands and thousands of calls and
letters from people like me and you to their Representatives and
Senators. We all need to keep up the pressure, telling our people in
Washington D.C. that we want the Udall bill fully funded NOW. We need
to tell those such as Rep. Wally Herger that we want him to change his
vote, and we need to tell others such as Rep. Riggs and Senator Boxer
that we are glad they co-sponsored the bill, but they still need to
convince others it is the right thing to do.
Parkinson’s is not the only movement disorder which may find a way to
deprive you of controlled movement, and perhaps your peaceful
retirement. The most common neurodegenerative disease of aging is
Alzheimer’s, which is the only one that claims more victims than
Parkinson’s. . More people in the US are diagnosed with PD than
multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS or Lou
Gerhig’s Disease), muscular dystrophy (MD), and myasthenia gravis
(MG) all together.
It is interesting in researching PD and Alzheimer’s, that break throughs in
treatment of one almost always bring new information on the other. So,
help all of us by contacting Congress at (202) 224-3121 and the
operator will answer "Capitol." Name the Legislator that you want to call.
They will connect you with his/her office. Then you can tell them what
you want, the Morris Udall Bill for Parkinson’s Research FULLY
FUNDED, NOW.
((PS the numbers are from a Young Parkinson's Handbook dated 1995.))
don't forget how to laugh (and do it often)
Marling McReynolds 49/3
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http://members.tripod.com/~marling
