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i am a new computer user and but for my daughter would have given up
searching for information
she searched in research journals of neurological society researchers i
think and found some interesting information then found this site
could someone list sites without jargon until i get used to the particular
vocabulary both of computer users and pd information givers
judy
>From: Linda J Herman <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: WWWeb Resources : or can we make the Web PWP friendly?
>Date: Fri, 14 Apr 2000 06:56:41 -0400
>
>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
>
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December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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