Congratulations Murray!

FROM:  the Medtronics New Hope for Parkinson's web site:
Living with Parkinson's:

Murray Charters: Charting the Course for People With Parkinson's

By Leah Galle

"Upon hearing the name Murray Charters, my first thought was that it
sounded a bit more like the name of a guide service (perhaps a charter
fishing service that helps others navigate and explore the pristine
waters of Canada) than that of an actual person. What I discovered,
however, is that Murray Charters is in fact very real, and while he does
hail from Vancouver, British Columbia in Canada, the waters Murray helps
people with Parkinson's (PWP) throughout the world navigate are the
overflowing waters of the World Wide Web (WWW).

Anyone who has attempted to look something up using the Internet knows
that while it is an incredible depository of information, it also can be
overwhelming. For instance, a simple search for "Parkinson's disease" on
the Google search engine results in a listing of 495,000 links. On Yahoo!
there are 365,000. Chances are the information you're looking for can be
found on just a handful of sites, yet most likely you must tread through
countless others in an effort to uncover the select few of actual use to
you.

One-stop surfing
For PWP, this isn't a problem. In fact, if you're looking for the latest
information on any topic related to Parkinson's disease (PD), you need to
visit just one site: Parkinson's Resources on the WWWeb by Murray
Charters. Murray, who still works full time as an elevator mechanic, was
diagnosed in 1994 but believes he can trace his first PD symptoms back
many years, possibly as early as 1968. It is said by one of his coworkers
that when Murray retires in September the elevator field will lose its
most brilliant mind.

On Murray's Web site, you will find links to everything including the
most popular PD news and discussion forums, as well as to PD-related
topics such as a typical doctor's visit, imaging technology, sleep
disorders, clinical trials, exercise, medications, nutrition, speech and
swallowing issues, advocacy and employment/legal considerations related
to PD. But that's not all, not by a long shot. Murray's site also
includes the history of e-mail and the Internet along with links to help
the Internet challenged become seasoned surfers.

Murray is quick to point out that he is not a doctor and that he is not
providing medical advice. He cautions visitors to review the information
they obtain via his site with their physicians. And, while he claims to
be "jus' an ol' red-necked mechanic who happens to have PD and a PC",
those who have benefited from Murray's ability to ferret out Parkinson's
related information on the Internet know the truth.

A wealth of information
"Murray has taken information from nearly every PD source and compiled it
in one easy-to-use package," says Judith Rogers, who has contributed a
significant amount of information to the online PD community herself.
"Almost everything a Parkie wants to know can be found quite readily on
his web site. And, for those of us who have PD and often can't get our
fingers working, or can no longer spend a lot of time searching for
needed information, this site is a Godsend."

Gail Vass, who Murray calls his cyber sister and who he credits as the
inspiration behind the site, says "Murray's Web site is so quick to
download, navigate, read and understand. It doesn't have all the bells
and whistles because people with Parkinson's don't need
entertainment—they need information."

Murray has tailored his site with what he calls VIP "Magic Links," which
require minimal typing or mouse usage to accommodate the physical
challenges many PWP face. VIP stands for Very Important Parkies. Gail and
Murray's wife, Brenda, serve as his primary site reviewers and provide
feedback not only on content, but also on readability and usability.
"Murray is very open to feedback because he wants to make his site as
informative and easy to use as possible," says Gail.

Barbara Patterson, founder of the PARKINSN Information Exchange e-mail
LISTSERVE and a fellow Canadian, says that Murray's dissemination of
Parkinson's related research information is invaluable. "He has
contributed more information to us (PD community) than most neurologists
have about PD."

Kathrynne Holden, premier PD nutritionist and regular contributor to this
publication, says that she uses Murray's web site daily to gather
information for her own forum. She also regularly posts information from
his site onto hers, as well as refers people to his site.

Greg Wasson, co-coordinator of the Parkinson's Action Network (PAN)
grassroots advocacy program, believes that Murray may not fully realize
what a valuable asset he is to the PD community. "I would say that in the
last two years, almost all of the important stories—breakthroughs,
backgrounders and what is cutting edge PD research—comes from Murray's
posts. I don't have to search myself anymore."

A humble, compassionate man
Murray, who is as humble as they come, won't take all the credit. On his
site, he credits a number of cyber friends for its creation, including
his "cyber sis" Gail and two other PWP, Jerry Finch, who volunteered to
set up the site for Murray, and Janet Paterson, who provided the initial
HTML coding of 31 pages for the site. In 2002, Murray, who built his
first computer from a kit back in 1979, taught himself HTML coding and
assumed the role of "Webmaster" of his site.

Gail says that she first connected with Murray on the PARKINSN list when
she was seeking information about the disease for her sister, who was
diagnosed eight years ago. Gail liked the way Murray answered questions
from other PWP and their loved ones. "He was seeking information about
his disease, yet was always so kind and generous in trying to help other
people. He's a humble, brilliant, gentle and generous man, and I am proud
to call him my brother."

A recent posting on the list clearly illustrates this. A mother wrote, "I
found your site by way of an assignment for an Internet class I am
currently taking. I was not aware of such lists and our assignment was to
join two. I chose this because my 34-year-old son was just recently
diagnosed with PD. I am still in shock and thought it might be helpful to
hear from and about others. I am a nurse but still feel very helpless.
Thanks."

Murray replied, "Welcome to the ‘Club' ... You needn't feel helpless
anymore, we are a large diverse group and there are many whose footsteps
trod these paths before you... You will find answers, friendship, and
compassion here..." Murray goes on to refer her to his web site and ends
with "Isn't the Internet a wonderful invention?" And his standard
signature, "cheers …….murray."

"Houston, we have a problem"
This spirit of compassion, willingness to help and positive nature has
endeared Murray to many on the various forums to which he posts. So, when
Murray posted his now infamous, "Houston, we have a problem" message on
the Massachusetts General Hospital PD discussion forum August 4, 2003,
there was an overwhelming outpouring of support. That initial message and
a number of others hinted at the possibility and eventually confirmed
that Murray had lung cancer.

True to fashion, Murray shared his journey through cancer with others via
his web site and on PD discussion forums. His thoughts on this experience
were told with humor and grace and testify to the power of positive
thinking. "My father often said ‘If you think you're sick, then you soon
will be sick. If you convince yourself you're not sick, then you will
soon find you aren't sick at all.' It seems attitude is the key to coping
well."

Murray signed each forum post with "Keep smilin'…I am." His standard
signature changed from "cheers…murray" to "cheers….Chemo Savvy (murray)"
after some challenging times with chemotherapy. His posts generated
tributes and poems from some of the most well known PD advocates. (They
can still be found on his site.) Barbara Patterson says, "Despite
Murray's own personal fears and discomforts, Murray continued, with wit
and wisdom, to share this time with us and to continue to be a tower of
support to those of us with PD."

Recognition abounds
"The outpouring of support for Murray has been incredible," says Ken
Aidekman, co-founder of the Parkinson's Unity Walk, which will honor
Murray with the 2004 Alan Bonander Humanitarian Award. The award is
presented yearly to an individual or individuals deemed to make an
exemplary contribution to Parkinson's education and advocacy. Alan
Bonander was a PWP who was selflessly devoted to patient advocacy through
research and direct interaction with physicians. "He had a knowledge base
as wide as any neurologist and would help anyone who asked," Ken says.
"He spent close to 100 percent of his time trying to help others with
Parkinson's disease, and when he passed away in 1996, there were e-mails
of gratitude from all over the world."

"Murray fits the spirit of the award very well," Ken says. "He provides a
unique and extremely useful service to the PD community. I can say that
thanks to Murray's e-mails, every day I find something that provides me
with new information about Parkinson's disease."

In addition to his web site and e-mail lists, Murray has taken on the
role as one of the leaders of the Parkinson's Pipeline Project tracker
task force, a group that voluntarily searches for information on
potential new PD drugs in an effort to speed their development and
ultimate Food and Drug Administration (FDA) approval.

Murray, who devotes anywhere between two hours and 10 hours per day to
tracking down information for his Web site, e-mail lists and the
Parkinson's Pipeline Project, said that when he learned that he would be
receiving this year's Alan Bonander Humanitarian Award, "My jaw dropped.
It took a little while to sink in, and then I thought, ‘this is huge.'"

Murray will receive the award at this year's Parkinson's Unity Walk,
which he will be attending with his loving and supportive wife Brenda.
There, he'll also have an opportunity to meet many of his cyber friends
for the first time. Murray and his cyber sister, Gail, have been talking
via e-mail daily since 1997 yet they have never met. That's about to
change when they join forces on Team "Fidgety Feet" on April 24th in New
York's Central Park and walk to raise money to help find a cure for PD.

Not long after learning about the Alan Bonander Humanitarian Award,
Murray learned that he also will receive the first annual Fishman Award
for Outstanding Service to the Parkinson's Community at the 10th Annual
Parkinson's Action Network (PAN) forum on Tuesday, March 30.

"Failure is not an option"
And that's not all. In addition to receiving the good news about the
award, in early February, Murray was given even better news: According to
his oncologist, Murray's cancer is "markedly improved," with his tumor
reduced to about one-third of its original size.

That's not only good news for Murray and his family, it is good news for
the entire PD community. Murray will continue to undergo chemotherapy and
will no doubt share his story with us via his Web site in hopes of
educating others about the combined experience of PD and cancer.

Murray Charters is an exceptional person providing an invaluable service
to the PD community. Perhaps Brenda Tucker, co-founder of People Living
With Parkinson's, said it best when she posted this message to Murray on
the MGH forum. "The service you are providing is phenomenal. Information
is knowledge and knowledge is power...you are empowering the community.
Thank you so much for that." Cheers to you, Murray.

About the Author

  Leah Galle is a St. Paul-based freelance writer who specializes in
health care writing. Leah is inspired by the Parkinson's patients and
caregivers with whom she speaks, as well as the professionals, both in
the medical and nonprofit communities, who have dedicated their lives to
helping those with Parkinson's disease.

http://www.newhopeforparkinsons.com/web/pid/86/

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