Included below is the text of a letter I sent to the editor of the Hamilton
Spectator (Hamilton, Ontario, Canada). It is in response to a page +
article by Nina King. The article itself is on the web at:
http://www.southam.com/hamiltonspectator/
For a list of media available by email, go to:
The Canadian Newspaper Association: http://www.cna-acj.ca/english/
and follow the links to a treasure trove of media including the Globe &
Mail article.
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Thank you for your article by and about Nina King's
battle with Parkinson's. Living and working with
Parkinson's is, indeed, a battle that millions of
people fight each and every day. I'm one of them. I
am also one of over 1600 people from more than thirty-
four countries on the Parkinson's Information Exchange
Network, (and the list owner) an internet discussion
list for people with Parkinson's, their caregivers and
others with an interest in Parkinson's. The list is
accessible at: [log in to unmask] The
archives of the list are maintained at:
http://james.parkinsons.org.uk/. These searchable
archives contain each message posted to the list since
it began on November 8, 1993.
I have two concerns about Ms. King's article, "Without
a Happy Ending". The first is that the drug, Tasmar,
identified in the article as a new drug for
Parkinson's, has been withdrawn from the market in
several countries due to three deaths attributed to it.
I understand that it is still available in Canada after
patients sign an 'informed consent'.
Patients who are currently taking the drug must see
their doctors before attempting to go off it.
The second concern is that people who have recently
been diagnosed with Parkinson's will be horrified by
Ms. King's experience (and that of Michael J. Fox)...a
fairly rapid downward progression followed by brain
surgery. This is not the usual course Parkinson's
follows; it usually progresses quite slowly. I was
diagnosed in 1992 and am still working full time as
well as continuing my involvement with the Parkinson's
list. Many of the people on the list are also
functioning well after many years with PD. Living
with Parkinson's becomes a balancing act: medications,
stress, diet, exercise.
Dr.'s Anthony Lang, & Andres Lozano (both from the
University of Toronto), in the first of a two-part
article, "Parkinson's Disease" published in the October
8 issue of "The New England Journal of Medicine" state
"Age is the single most consistent risk factor, [for
Parkinson's] and with the increasing age of the
general population, the prevalence of Parkinson's
disease will rise steadily in the future." The aging
of the baby boomers will certainly cause an increase in
the 100,000 people with Parkinson's now in Canada.
The average age of diagnosis is about 55 which means
there will be as many diagnosed younger as older than
55 which will put a great deal of pressure on the
health care system in Canada ... already experiencing a
great deal of difficulty.
Increased funding for Parkinson's research is
desperately needed.
Joan Samuelson, in her testimony at the Hearing of the
House Appropriations Committee, Labor, Health and Human
Services Subcommittee, February 4, 1998 re the Morris
K. Udall Bill (directing $100,000,000 specifically for
Parkinson's research) said:
"Every person afflicted with Parkinson's can describe
the effort to manage their medication so they are at
their best when out of the house. And then, one day,
that person starts disappearing, as the act of coping
becomes too much. Perhaps if we died soon as a
function of Parkinson's its impact would appear more
dramatic. Instead, we slip out of the functioning
world and are forgotten."
On the Parkinson's list, we have a motto; "INVISIBLE NO
MORE". Thank you for making Parkinson's more visible.
Barbara Patterson
99 Head Street
Dundas, Ontario
L9H 3J1
905-627-1832
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Barbara Patterson [log in to unmask]
HSC 2J22 905-525-9140, ext. 22403
School of Nursing
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