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Surfing the Web to learn how to live well with Parkinson's disease

The more you know about Parkinson’s disease, the better able you will be to participate in decision-making about your treatment options. According to former U.S. Surgeon General Dr. C. Everett Koop, “The best prescription is knowledge.”

 

Nowhere is medical knowledge more readily available than on the Internet. Every day brings new health-related sites offering free access to a seemingly infinite amount of information, including current details about ongoing clinical trials (www.PDtrials.org). If you don’t want to search the Web yourself, you can subscribe to free services, such as Google alerts (www.google.com/alerts) and RSS feeds, which will send you the very latest PD-related news throughout the day, from sources across the Web.

 

Not all sites are created equal, however. Anyone with a computer and Internet access can publish information in cyberspace. How can you distinguish reliable from incomplete or inaccurate content when you have little or no medical or scientific knowledge? Rely on common sense and a healthy dose of skepticism.

 

Used wisely and cautiously, the Web is a powerful resource for finding new ways to live well with Parkinson’s. PD message boards and chat rooms are great for making virtual friends who will lend an ear 24/7 — sharing their experiences and strategies for coping with Parkinson’s, and providing support when needed. You needn’t feel badly if you opt not to post right away. “Newbies” often “lurk” for weeks or months, content reading other people’s posts.

 

NeuroTalk

(http://neurotalk.psychcentral.com/) is among the most robust forums. A word of caution from my own experience: do not project and assume that your disease progression will be the same as someone else’s. Ours is a “designer” disease and no two PWP follow the exact same course.

Web surfing guidelines

These “safe surfing” guidelines can help you get the most from the Internet:

  • Frequent sites of trusted sources (e.g. major PD organizations, medical centers recognized for excellence in Parkinson’s research, patient advocacy groups, and government health agencies)
  • Recognize that surfing even trusted Web sites is no substitute for obtaining your doctor’s medical diagnosis and advice based on a physical exam.
  • Make search engine queries as specific as possible to limit the number and increase the relevance of suggested sites. Be aware that paid advertisers rise to the top of the list.
  • Verify when the information was last updated and confirm it with at least two other respected, independent sites before you assume it’s true.
  • Determine the site’s purpose (e.g. education, sales, etc.) and who funds it.
  • Look for contact information.
  • Don’t share personal information on line with people whom you do not know very well.

 

 

 
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**Legal Disclaimer: The contents of this website are solely for information purposes about our experiences and are not in any way to be considered medical advice. For medical advice, contact your doctor.  While we make every effort to assure that the information is accurate and up to date, an error may occasionally occur.  All information and materials are provided AS IS without any warranty of any kind.  In no event will this website or its owner be held liable for any damages arising out of information contained in our website.