^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine, USA land of lighthouses 35 deg. F / mostly
cloudy
***********************************************************
On 12 Mar 1998 17:17:44 -0500 "Fairbrother, Marc"
<[log in to unmask]> writes:
Here's last year's proclamation. Please make the necessary revisions and
e-mail back to: [log in to unmask]
If you are having problems sending it to her (her e-mail has been doing
funny things lately), feel free to e-mail it back to me and I'll be sure
she gets it.
Thanks, and best of luck!
Marc
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Hi Marc,
Immediately below, please find my draft for the Governor's upcoming
Parkinson's Awareness Month Proclamation. I am posting it to the World
Parkinson's List for comments. Please thank Governor King again for his
support.
We who have Parkinson's Disease are very grateful for the effort you
are making on our behalf.
Sincerely,
Ivan Suzman, Maine State Coordinator for Parkinson's Awareness Day (
April 11,1998 )
_________________________
Whereas, Parkinson's Disease, or Paralysis Agitans, is a devastating,
painful and incurable brain disorder of unknown origin, that disrupts and
can end the lives of those who suffer from it, as well as overwhelming
the lives of their families and friends; and
Whereas, it is estimated that the total costs in lost wages, lost
caregiver wages, nursing home, hospital and at-home care, physicians' and
surgeons' care, and medications is estimated to cost the United States
$26,000,000,000.00 annually, and to cost the State of Maine approximately
$13,000,000.00 annually; and
Whereas, the livelihoods of dozens of Maine families are dependent on the
discovery of a cure for Parkinson's Disease, in the absence of which,
these families may incur imminent financial devastation; and
Whereas, Parkinson's Disease often takes an enormous emotional,
psychological and physical toll on the families surrounding their
suffering loved ones; and
Whereas, although usually affecting adults over 60, Parkinson's Disease
is known to appear as early as in the late teenage years; and
Whereas, Parkinson's Disease is being detected in increasing numbers of
individuals between 25 and 45; and
Whereas, Parkinson's Disease appears eventually in approximately 1of 4
persons older than 80, and in 1 of 10 persons older than 60, thereby
directly touching the lives of at least 1 of 10 families in Maine; and
Whereas, according to the American Parkinson's Disease Association, there
are now approximately 1.5 million people in the United States diagnosed
with one of the forms of Parkinson's Disease, of which 7,000 or more are
in the State of Maine; and
Whereas, Maine's true number of persons inflicted with Parkinson's
Disease, given the poor and rural nature of the population of the State
of Maine, and its large number of senior citizens, may be far greater
than the 7,000 most recently suggested; and may well be closer to 13,000;
and
Whereas, many hundreds of citizens of Maine living with Parkinson's
Disease never have access to treatment by either a knowledgeable
neurologist or an out-of-state specialist, cannot afford the medications
currently on the market, and cannot afford health insurance to pay either
for treatments or for qualified care providers; and
Whereas, in the State of Maine, there is still not one physician,
physician's assistant, nurse or nurse-practitioner, social worker,
psychiatrist, psychiatric worker, counsellor, occupational therapist,
physical therapist or massage therapist, medical educator or medical
writer, in residence, who is a Parkinson's Disease specialist; and
Whereas, no Parkinson's Disease clinics, treatment centers, home-care
services, legal protections or public education programs exist anywhere
in Maine, to advise and support the families and caregivers of persons
living with Parkinson's Disease; and
>Whereas, more Americans suffer from Parkinson's Disease than the total
of all those who suffer from three equally tragic conditions, those being
multiple sclerosis, muscular dystrophy, and Lou Gehrig's Disease,
combined; and
Whereas, the symptoms of Parkinson's Disease in its various
forms--including stillness, tremor, loss of vocal and facial expression,
slowness or absence of movement, and difficulties with balance and
walking, are often mistaken for a normal part of the aging process; and
Whereas, failure of the body's internal thermostat, failure of the
digestive and urinary systems, disturbances in speech, sleep and
personality, and eventual physical and mental exhaustion,
are difficulties encountered in the more advanced stages of Parkinson's
Disease; and
Whereas, because the underlying causes of Parkinson's Disease, in its
various forms, are unidentified, and anti-parkinsonian medications are
only able to assist in controlling some of the symptoms of the disease
for a limited part of one's lifespan, so that the progression of the
disease, although slowed, is still unstopped; and
Whereas, in the absence of diagnostic blood or other tests, genetic
screening, and specialized counselling, many individuals in Maine with
Parkinson's Disease live in an atmosphere of fear, and suffer various
forms of discrimination and isolation;and
Whereas, the historic and crucial Morris K. Udall Parkinson's Disease
Research, Education and Assistance Act, which would provide up to
$100,000,000.00 of Parkinson's-specific funding, has recently been passed
by the Congress after a courageous, four-year struggle by Parkinson's
sufferers usually too sick to go to Washington; and
Whereas, this Udall Parkinson's Act is yet to be funded by the Joint
House-Senate Appropriations Committee and lingers there at this very
moment; and
Whereas the entire Congressional delegation from Maine was the first
delegation from any State to join in co-sponsoring the Udall Parkinson's
legislation; and
Whereas people living with Parkinson's Disease are frequently elderly, or
severly disabled younger adults, who have difficulty being heard, and who
are often institutionalized or home-bound; and
Whereas, substantially and compassionately increased research, public
education and aid to families and individuals living with Parkinson's
Disease are all needed urgently, to make life with Parkinson's Disease
somewhat more bearable, somewhat less frustrating for caregivers, and
ultimately, to aid in finding a cure for the various forms of
Parkinson's Disease, whether of genetic, traumatic or developmental
origin; and
Whereas, the leading public officials of the State of Maine and in its
medical community are now called upon to aid in reversing the
invisibility and voicelessness of its citizens suffering from Parkinson's
Disease; and
>Whereas, April 11 has been proclaimed globally to be World Parkinson's
Day, a day for all to recognize the need for more research and help in
dealing with the devastating effects of Parkinson's Disease; and
>Now, therefore, I, Angus S. King, Jr., Governor of the State of Maine,
do hereby proclaim April, 1998 as Parkinson's Disease Awareness Month,
and Saturday, April 11, 1998, as World Parkinson's Day,
throughout the State of Maine, and urge all citizens to extend their
support for those struggling with Parkinson's Disease and to their loved
ones trying to help fight the battle.
Submitted by,
Ivan Suzman, Portland
