Please feel free to use this in any way that would be useful in ensuring
funding of the Udall Bill. Barb
This is one Canadian voice asking you to do your utmost to ensure
full funding for the Udall Bill. I was diagnosed with Parkinson's in
September, 1992 and I am still working full time, although it is becoming
more difficult as Parkinson's progresses. I would like to be able to
work until retirement age but that is rapidly becoming an impossible
dream.
As Joan I. Samuelson, President, Parkinson's Action Network said in her
address to the Hearing of the House Appropriations Committee Labor,
Health and Human Services Subcommittee on February 4, 1998: "In a 1988
study, a group of researchers at the University of Rochester calculated
that of the 44% of Parkinson's patients in the first stages of the
disease, 31% would lose their jobs within one year as a result of
Parkinson's. Despite the common myth that Parkinson's only affects the
oldest sector of the country, in fact the average age of symptom onset is
57, with a third of all victims' symptoms starting in their 20's, 30's
and 40's. As a result, Parkinson's-caused early retirements and forced
disability are the norm. Some lose their jobs simply due to the stigma."
In November, 1993, I started a Parkinson's discussion list on the
internet. We now have more than 1600 members in more than 31 countries.
We have one thing in common: Parkinson's. For each one of us who has
Parkinson's, there are several others affected by it: loved ones,
caregivers, co-workers. We share a wealth of information about living
and working with Parkinson's. Reading their stories is both
inspirational and heartbreaking. An example:
"I watch my body systems malfunction. I can't smell my food, my memory
plays tricks on me, my hands can't do surgery any more, I fall asleep when
I don't want to, my blood pressure regulator is acting up, my thermostat
is sticky. My voice is weak and slurred, and my balance is poor. My gait
is unsteady, and sometimes people think I'm drunk. My medication causes
hallucinations and flashbacks. Too little and lethargy drags me into
sleepy oblivion, too much and my mind races from thought to thought so
quickly I can finish nothing. I am dragged on a Cooks tour of psychiatric
symptomatology by L-Dopa, a drug whose hallucinogenic properties have not
yet been discovered by the young. My lungs don't work properly, my
hormones are out of wack, I can't work like I used to. My wife has left
for a life of peace and quiet, so I don't need to worry about the libido
and impotence."
According to the World Health Organization at:
http://www.who.ch/inf/fs/fact152.html
"Prevalence: There are few reliable data of global prevalence or
morbidity of Parkinson's disease, but it is known to affect all ethnic
groups. The overall prevalence of Parkinson's disease in Europe, for
example, is estimated to be 1.6 per 100 in persons over 65 years of age.
In 1990, worldwide there were an estimated 4 million people suffering
from the disease. It should be emphasized that more than one in ten
sufferers are diagnosed before the age of 50."
These numbers are only the tip of the iceberg. Please fund the
research. Time is running out for many of us.
Barbara Patterson
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Barbara Patterson [log in to unmask]
HSC 2J22 905-525-9140, ext. 22403
School of Nursing
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