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Yes, Murray, you're the best!! Charlotte Mancuso Linda J Herman <[log in to unmask]> wrote: 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/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn In the body of the message put: signoff parkinsn