Dear friends,
On March 21, the 17th year of battling PD begins for me. The fight is
getting tougher. My trunk, neck ,arms and legs go into
total, PAINFUL paralysis within 15 minutes of wear-off
of my combined medications.
IF I do not manage for some reason to get my next dose
to bring me back up to functioning again, I am in MAJOR
trouble.
All of the brain surgeries still frighten me. Yet I have
enormous respect for the surgeons who are trying to
help us have a better life. And I am about two hours away
from trying Amantadine for the very first time.
Maybe my Parkinson's DIsease (young-onset ,paralysis type)
is derived from a childhood flu virus, and who knows??
Maybe the antiviral drug Amantadine will knock out my
paralysis., and neutralize the virus in my brain and spinal cord.
SO, to overcome my fragility, here is a boldly written,
brand new contribution to a PD-free world...
a possible Parkinson's Resolution for general use.
Perhaps this may be useful to you
if you might be able to have something similar introduced
in your state or country's governing legislature.
Friends in the PD Awareness Community who
are planning events may freely use the
draft I have posted below without reservation.
It would be great if f all 50 state legislatures.
and other countries would link through PIEN
to establish a world push for Awareness Resolutions
Let's work together to draft a POWERFUL
statement for 2002.
Ivan Suzman,
52/39/36
JOINT RESOLUTION RECOGNIZING PARKINSON'S DISEASE AWARENESS MONTH
WHEREAS, Parkinson's Disease, or Paralysis Agitans, is a tragic,
progressive disease of the brain and spinal cord, that usually affects
adults over 40 years of age, and is now recognized to occur in any of 3
forms: Later-life onset Parkinson's Disease; Young-onset Parkinson's
disease, affecting adults under 40 years of age; and Juvenile-onset
Parkinson's disease, affecting children and teenagers; and
WHEREAS, Parkinson's Disease takes a devastating emotional, social,
psychological, physical and financial toll on its patients, as well as on
their families and friends, and notwithstanding their support, still
causes many suicides; and
WHEREAS, Parkinson's Disease appears eventually in approximately one of
4 persons older than 80 years of age, in one of 10 persons older than 60
years of age, and in a significant number of young people under 35 years
of age; and
WHEREAS, according to the American Parkinson Disease
Association, there are an estimated 1,500,000 people in the United States
who have been diagnosed with Parkinson's Disease, of which an estimated
7,000 or more are living in the State of Maine, and there are likely to
be at least another 1,500,000 unknown, uncounted Parkinsonians who have
never seen a neurologist, bringing Maine's estimated numbers towards
15,000 or more persons, many of whom are thought to have a supposedly
normal "shaking palsy"; and
WHEREAS, there are an estimated 60,000 new patients
diagnosed with Parkinson's Disease annually in the United States, which
amounts to one person every 9 minutes, or 6 new patients every hour; and
WHEREAS, Maine has no Parkinson's Disease crisis, public
education curricula or programs, nor Parkinson's-oriented human services,
no established medical specialist clinics ,no specialist medical
educators, no adult care programs, no mobile diagnostic teams, no human
services specialists,no police or fire department education programs,no
justice and courtroom personnel training, no ambulance or rescue worker
training courses,no adapted housing units, no long-term home-care
planners, nor counselling and support specialists, particularly for the
financially needy and the single Parkinsonians living alone, despite
pressing need statewide; and
WHEREAS many Parkinsonians encounter precarious legal and
personal situations when they are mistakenly thought to be under the
influence of illegal or prescription drugs or alcohol, due to the their
unusual movement and gait patterns; and
WHEREAS, Parkinson's disease causes a breakdown in cell function deep
within the brain,and is still an incurable brain disorder of unknown
origin that disrupts and can end the lives of those who suffer from it:
and
WHEREAS, the visible symptoms of Parkinson's disease, which include
tremors, slowness of movement, shuffling gait, difficulty with balance,
malfunction of vocal cords, lessened facial expression,and the internal
problems, including colonic
impaction, changes in blood pressure, hypothermia, loss of visual and
auditory reflexes, urinary and kidney-related difficulties and brain
chemistry disruptions causing emotional changes, are often mistaken as a
normal part of the aging process; and
WHEREAS, medications can only control some of the symptoms of
Parkinson's Disease and only for uncertain periods of time; and
WHEREAS, there is a great need for trained advocates, especially in the
medical, justice, legal and law enforcement professions, to protect the
inalienable rights of persons with Parkinson's Disease; and
WHEREAS, there is an urgent need for a Parkinson's Disease clinic in
Maine to give patients previously unreachable access to specialists in
Parkinson's Disease, and to provide more effective support programs and
services to Parkinson's disease patients and their caregivers and
families; and
WHEREAS, increased research is needed to help find more effective
treatments and ultimately to find a cure for Parkinson's Disease; and
WHEREAS, full implementation of federal law, the Morris K. Udall
Parkinson's Disease Research, Education and Training Act of 1997, which
directs the National Institutes of Health to spend up to $100,000,000
annually on Parkinson's Disease research, needs continued support; and
WHEREAS, April 11th has been proclaimed World Parkinson's Disease Day, a
day for all to recognize the need for fundamental research,and to provide
the public with new,open channels of help as they battle against the
devastating effects of Parkinson's Disease; and
WHEREAS, the leading public officials of the State and leading medical
educators in the State's medical community are now called upon to aid in
reversing the invisibility and virtual voicelessness of its citizens
suffering from Parkinson's disease; and
WHEREAS, three great North Americans, Mr. Muhammad Ali,
Mr. Michael J. Fox and former Attorney-General Janet Reno are perhaps the
only continuously recognized and publicly known Parkinson's Disease
advocates who appear on television and in other mass media, and who are
each sufferers from Parkinson's Disease, and who have been able to cling
to better health only with great difficulty and with support from many
persons around them,
now, therefore, be it RESOLVED: That We, the Members of the One
Hundred and Twentieth Legislature, now assembled in the Second Regular
Session, recognize the month of April as Parkinson's Disease Awareness
Month throughout the State; and be it further
RESOLVED: That suitable copies of this resolution, duly authenticated
by the Secretary of State, be transmitted to the Maine Parkinson Society
, the Maine Chapter of the American Parkinson Disease Association, the
Maine Representatives of the Parkinson's DIsease Foundation and the
Parkinson's Action Network, suitable Public Schools, Colleges,
University of Maine educational units, facilities and programs,
including the School of Law, all police-training Academies, the
University of New England College of Osteopathic Medicine, the state's
publicly-funded hospitals, Nursing Education Programs, and publicly-
funded teachers in the field of Special Education and who are working
with
people living with disabilities, the Maine Department of Human Services,
Programs which train our state's specialists in Speech and Voice Therapy,
and other educational entities, the Disability Rights Center ;of Maine,
the Board of Licensure in Medicine.
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