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Hi Linda, Your post is very thought provoking and encouraged me to change the topic of WWWeb Resources 14 to E-Mail & Searching... I don't come with credentials - just a mechanic with Parkinson's - but my goal for Parkinson's Awareness Month is to devote my spare time to posting "bookmarks" in an effort to "energise" this group and spread Parkinson's Awareness. In response to where could the newly diagnosed get info.... The first WWWeb Resources 01 - FAQ's was intended as the starting point for the new Parkies... The FAQ's are question and answer and (in my mind) should answer their concerns and form a base they might wish to discuss / clarify with their medical professional. It's what I woulda liked when I was diagnosed. Now the how-to get it where the newly diagnosed can find it may involve mail, e-mail, rumor or what have you... At the end of each page I've encouraged the reader to pass it on... all the best ........... murray On 14 Apr 2000, at 6:56, Linda J Herman wrote: > Dear computer geeks :) and other list members, > Thanks for all the replies on Web searching - these were all good > suggestions. One of my concerns was for those new to the Internet and the > newly diagnosed, who are looking for PD information on the Web - and what > they are likely to find and also not find. The Web has been described as > a library with all the books thrown randomly on the floor. Are there any > ways we can help make the search for PD Information less random? > Frans van Dunien said it best - "And then there are the jewels, the > resources like this list, Janet's site, John Cottingham's etc. Operated > by volunteers without funding. And somehow these are the best sites by a > long shot. So how do we tell the newcomers where to start and what they > can ignore..." > As part of my job, I teach undergraduate students how to do research on > the Internet - at one end are returning adult students, some of whom have > never used a computer before. At the other are the recent H.S. grads who > think they know everything about the Net. I've observed lately that even > the 18 year olds are complaining about all the commercial sites - "How do > I get to the information?" I've even had a few ask for a book instead!!! > Many also give up after the 2nd or 3rd result screen, if they don't find > what they want. Or they just use anything they happen to find immediately > - without knowing where it's coming from or what it's biases may be. Many > just get lost after drifting from one link to another. > Another Parkinson's example - look under the Yahoo subject directory for > Parkinson's Disease - a very likely beginning search . There are some > good sites, but many other good ones are missing. Then there are links to > sites like one called the "Parkinson's Information Web Site" - which > sounds like a good place to start. It turns out to be another drug > company site - this one is Somerset, makers of Eldepryl, which includes a > page on why Eldepryl is better than the generic brands (Not what my > doctor told me). Another link is to a site last updated in 1997. > So what can we do? From all the replies I've summarized some ideas: > - Could our list web site owners provide more links to other > "PWP-friendly" > sites, and those that they have visited themselves and know provide > accurate, up-to-date information. Could you also include links labeled > something like "Good sites for the newly diagnosed." > > - William Parrett offered some hints for increasing the ranking of web > sites on search engines. William, could people contact you for assistance > if needed to adjust their meta-tags? > > - Volunteers could check the directories and meta-sites that have a PD > category, and note which of our favorite sites are missing, and ask the > site owners to submit their pages for inclusion. > > - Each of the PD organization sites offers unique and valuable > information. Could they link to each other? For example, the NPF site > has some good information on Young Onset PD, and there is additional info > on the APDA Young Onset I&R site. Why not link to one another? We need > all the information we can find. I also noticed yesterday on the NPF > site there is a new Parkinson's Ring link - but only 4 sites are on it so > far. It doesn't say where this Ring originated - but this could be a good > tool if there are some guidelines for which links are included. > Any other ideas? > Linda >