Dear All,
This one went out (fax) to the St Louis Post Dispatch this morning.
If anyone sees any Udall letters to the Editor would you please send me a
clipping or a copy of that letter?
Regards,
WHH
"Heck no I'm not OK, I have Parkinson's Disease!"
Mention Parkinson's Disease (PD) to the average person and one hears things
like: "My great aunt Sofia had that, her fingers wiggled." The image that
comes to mind is an elderly person, slightly slow and with a tremor. However,
many people with PD (PWP) got the disease before their fortieth birthday. PD
is not often kind to them.
This is a complex, but not uncommon disease. The onset is insidious.
.Doctors often believe an early PWP is malingering or having "mental
problems". Later, the stiffness the patient has felt for months or years
starts to show in body movements. Eventually the diagnosis becomes obvious.
The PWP is started on some "wonderful pills" that return them to a normal
life. Unfortunately, PD is progressive and the medicine that worked so well
the first several years begins causing side effects of increasing severity-
mostly involuntary body movements.
That's what was going on one day last year when some concerned citizens asked
me if I were OK. I was thrashing around, fogging up the car windows, in a
store parking lot. I felt a flash of anger. They were genuinely concerned
but the question demanded a trivial answer ("fine"). I was not "OK" but there
was nothing they could do, and it took a lot of effort for me to explain that
I lived with this.
Bless their hearts, they located my wife and told on me. She reassured them.
Once before, someone had dialed 911 to report "a guy in the parking lot having
a seizure".
PD is an expensive waster of lives and treasure. Studies have shown the cost
to the US Economy is about $25 billion a year. As the baby boomers age, the
country will pay even more.
The medicines are expensive, very few can continue working past about six
years, and there usually is another ("caregiver"-CG) who is also taken out of
productive pursuits. With social security disability, lost taxes from
disabled workers, medicines for veterans, etc. what the US Government pays
must be substantial. A conservative guess is 5 billion dollars a year (over
$13 million a day). That would go through $100 million in a week (7.3 days).
PD should be eradicated ASAP. Fortunately, today there are many hopeful areas
of research. They include neuroprotection, cell replacement, and stimulation
devices. Funding has been lacking.
Legislation (The Morris K. Udall Parkinson's Research and Education Bill) for
the government to invest in a cure and start recouping some of that waste has
been around since the spring of 1995. Unfortunately, Congress has been
squandering both lives and money by failing to pass that legislation until
last year. Even today with a huge budget excess, they have yet to fund this
legislation.
If a cure is found and applied to end PD, it saves the United States 5 billion
dollars, year after year. That rate of return is 1000% the first year that
the costs of PD go away. Lesser therapies give lesser rates of return.. Help
us be OK and do yourself a favor. Call your Congressperson at (202) 224-3121
tell him/her to get on with it. Tell him/her to "Fund the Udall law. Pass
the full 100 million, now.!"
541 words (excluding these and the name block)
