I'm sitting here in my wee office simply buried under mounds of "Cyberwork,"
(my job is online, ergo much of what I do is also online), plus I've had major
email delivery and receipt problems over the past two weeks (AAAAAARGH!), but
felt compelled to respond to this message (and pray it'll make it thru MSN's
email problem and onto the PD List)
For some reason, I found this message and IT'S message to be strangely and
intensely moving to me. It was almost a bland message in a way, yet the very
fact that one of the 50 states in the nation that I live in FINALLY has
dedicated itself to publicly acknowledging the disease I live with day-in,
-day-out touched me.
In the USA there are states which dedicate days, weeks, months to every sort
of occasion imaginable. You wouldn't in your wildest dreams begin to imagine
some of the bizarre things that have received state or national recognition!
Why we even have "Groundhog's Day!" <grin> But as far as I know there's been
no "official" public notice by one of our states of Parkinson's Disease. Mind
you, there may be several states recognizing PD but I've never heard of 'em.
I've often wondered just WHY Parkinson's is so 'invisible" a disease. And
frankly, I've come to the conclusion that most of us having PD are just too
damn TIRED all the time to take physical action - excepting Dale Severance -
<smiling> (GO GET 'EM, DALE!).
That tiredness ends up being apathy, and I can understand it, because I'm no
different than the "average tired Parkie." I can understand it... but I don't
LIKE it.
What I CAN'T understand is why a gigantic bunch of our family members, our
nearest and dearest after all, aren't out there beating down the doors of the
governmental offices, the CDC (Center for Disease Control), the NIH (National
Institutes of Health), and every other sort of agency or institution which
funds medical research.
Why aren't our friends writing to the media about Parkinson's? Why isn't
Oprah, Rosie, Maury... and the host of other TV talk show hosts inviting
Parkies and their families on their shows to show the world what this
miserable disease does to the lives of millions of people throughout the
world?
Why isn't there hundreds...thousands... of "squeaky wheels" out there in the
public eye DEMANDING the recognition of Parkinson's Disease as a major threat
to not only the lives of it's sufferers, but to the quality of life of those
PD victims and their families?
And why isn't it recognized that the paltry sums devoted by the government of
the United States (and I DO recognize there is a larger world out there
inhabited by others having PD, but since I live in the USA, I refer only to it
in this instance) to Parkinson's research is but a mere pittance when compared
to the vast amounts of money that it spends on Social Security Disability, and
other expenditures that are made to help support and provide medical care for
the PD sufferer throughout the years of their lives as the disease grinds
slowly away at them?
Are we THAT invisible to the majority of well people? Don't they SEE us?
I've been with a small group of Parkies at local restaurants after our support
group meetings, and HAVE seen other diners get up in the middle of their meal
and move to another table where they don't have to see the wild gyrations of
one or another of our group. I can even understand why someone wouldn't want
to look at others flailing around, especially when the onlooker is dining, but
what about the rest of the time? ARE we invisible to most people? Is OUR
suffering causing discomfort in the WELL population to the point where they
refuse to see us?
As I reread this message, (while thanking God for spell-checkers!), I can't
help but wonder if it's not US that the world needs to see, or even famous
movie stars and other luminaries advocating for the eradication of Parkinson's
disease. I wonder if we don't need to hire a upscale, Madison Avenue-type
advertising agency, and have a media news-blitz? (picturing a chorus line of
tuxedo-wearing tap dancers, complete with top hats and canes dancing in
perfect unison while the guy in the middle fumbles with then drops his top
hat, stumbles on his cane, and begins to teeter as he dances....) <all to the
rock and roll beat of a groups singing "Parkinson's ain't a fun disease....>
I guess what I've been trying to say is that all along we've gone the
conventional route in seeing funding (short of holding up banks and
convenience stores), AND public recognition, and mostly that hasn't worked.
To the majority, we're STILL invisible. How cna we go about making
Parkinson's known without turning of the general public completely?
Jeeeeeez! I gotta get back to work... Seems that I just have QUESTIONS when
I'd like to have ANSWERS.
Barb Mallut
"Lil_Honey" on the PD Chat
[log in to unmask]
----------
From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of will johnston
Sent: Friday, February 07, 1997 7:33 AM
To: Multiple recipients of list PARKINSN
Subject: CERTIFICATE OF RECOGNITION - VIRGINIA
____________________________________________________________________________
CERTIFICATE of RECOGNITION
By virtue of the authority vested by the Constitution in thhe Governor of the
Commonwealth of Virginia, there is hereby officially recognized:
PARKINSON'S DISEASE AWARENESS MONTH
WHEREAS, Parkinson's Disease is a brain disorder that usually affects adults
over 40,
although it can appear in younger patients; and
WHEREAS, more individuals suffer from Parkinson's Disease than multiple
sclerosis,
muscular dystrophy and Lou Gerhig's Disease combined; and
WHEREAS, according to the American Parkinson's Disease Association of
Virginia, today
there are over 13,000 Virginians affected by Parkinson's Disease; and
WHEREAS, in 1995, there were over 4,000 individual cases of Parkinson's
Disease reported
at Virginia hospitals, and there were 270 Parkinson's Disease fatalities; and
WHEREAS, the symptoms of Parkinson's Disease -- stiiness, tremor, slowness
and poor
movement, and difficulty with balance and speaking -- are often mistaken as
a normal
part of the aging process; and
WHEREAS, although the cause of this disease is unknown, Levodopa and other
antiparkinson
drugs can effectively control Parkinson's Disease symptoms; and
WHEREAS, increased education and research are expected to help find more
effective
treatments and ultimately a cure for Parkinson's Disease and will provide
more effective
support programs and services to Parkinson's Disease patients, their
caregivers and
families;
NOW, THEREFORE, I, George Allen, Governor, do hereby proclaim April 1997 as
PARKINSON'S DISEASE AWARENESS MONTH in the COMMONWEALTH OF VIRGINIA, and I
call this observance to the attention of all our concerned citizens.
G I
R N
I I
V A /S/ George Allen
Governor
SIC <SEAL> TYRANNIS
SEMPER
/S/ Betsy Davis Beamer
Secretary of the Commonwealth
____________________________________________________________________________
_____
And here's to long "ons" and short "offs"
WILL JOHNSTON 4049 OAKLAND SCHOOL ROAD
SALISBURY, MD 21804-2716
410-543-0110
Pres A.P.D.A. DelMarVa Chapter
