Hi Barbara,
 
[a busy few weeks!]
 
>1.  Does anyone know of any sources of handouts/displays etc. about AOL,
>Prodigy, Compuserve, etc. which would explain how-to access the internet
>and include costs, training, etc. ?
 
I have the contents of a basic "Internet Awareness" course I ran - designed
to give people a quick introduction to the Internet so they at least
understand what their kids are talking about :-) The slides are in
PowerPoint format, you are welcome to them.
 
There is also a lot of stuff like this on the web, and a newsgroup for
newusers which gets regular postings of introductory material. Think I
might have these archived somewhere.
 
>2.  Does anyone have any suggestions as to what information people who
>are not computer literate might require in order to access our list?
 
I think primarily "Find a friend" who has access already and can help you.
I know several people who got going by duplicating my setup exactly.
 
Perhaps there is something that can be done to put Parkinsons people in
contact with people who can help get them started on the Internet?
 
 
>3.  Does anyone have any suggestions about a research project based on
>our list....the individual contributors to the list will be anonymous of
>course?  I find this project especially difficult since the list members
>are probably not representative of people with Parkinson's and have very
>different reasons for using the list...some of us have Parkinson's and
>are using this list as a 'support group'...some represent support groups
>... again, etc.  If one were to look at the people on this list who have
>Parkinson's, it might appear that a very large number of university
>professors have Parkinson's rather than the fact that university
>professors have a wider access to the Internet.
 
As you say, I think any projects studying this list and its members would
be hard pressed to come to any conclusions apart from those specifically
concerning this small (self selected) group.
 
The dynamics of our discussions would be interesting - a sociology
researcher did an analysis of some of the email from my last job, it was
fascinating.
 
We could use the list as a transport mechanism for a wider study. i.e. if
we each agreed to interview in depth a few people we knew who were not on
the list. It would take so much effort that we should be careful to do it
only a few times, and do it well. But we could easily interview 1,000
people from around the world.
 
Another thing that would be interesting would be the makeup of this list -
how many of us are from support groups, or medical professionals, carers,
sufferers etc.?
 
 
I have always felt that the individual support groups (i.e. APDA, the UK
PDS etc.) could and should use this list (or perhaps related one) as a
means of communicating and sharing their work.
 
For example, if the UK PDS has a leaflet on Speech Therapy, then the APDA
could copy it and just make any local changes needed. The list could be a
clearing house of resources.
 
We could also learn a lot from each other - different countries have
different approaches to PD. (Pallidotomy seems to be a lot stronger in the
US than the UK at the moment, but we have Apomorphine which you don't seem
to use very much).
 
I also get the feeling that we would be interested in the research and
welfare projects you are running, and vice versa.
 
So I would like to see all the staff from all the support groups
communicating with each other. We are, after all, all fighting the same
problem, just in different geographical areas.
 
I tried to suggest this at the recent PDS UK AGM, and was told that they
were more interested in setting up a dedicated European network :-(. Looks
like I have some awareness raising to do, but hopefully in the coming
months will be able to bring us into the wider international community.
 
 
 
The other problem that will hit us soon is one of volume. Mailing lists are
really good for small (500 ish people) discussion lists, but don't manage
large volumes well - hence newsgroups. Personally I can barely keep up with
this list, but that is probably due to the volume of work-related mail I
get.
 
The one thing I have noticed is the quality of the information on the list.
Really good stuff. Lots of lists are just full of junk.
 
I was promised the write-ups from last months PDS (UK) AGM, which had a
couple of interesting research talks, one on Lewy Body disease - Lewy
bodies are a common factor across PD and a bunch of other neurological
conditions. When (if) I get the write-ups I will make them available to the
list.
 
Anyone got some good arguements why the head offices of the support groups
should sit up and take notice of this list?
 
 
 
Simon
 
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Simon J. Coles                       Email: [log in to unmask]
                                Home Phone: +44 1932 220073
                                Work Phone: +44 1344 778783
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