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Hi, everyone.

Sorry that I attached the wrong documents.  They had been saved in Word 7,
and that's why many of you couldn't read the attached document.  I've now
saved the paper I wrote for the Perth Conference and list of address in
plain text form so most of you should be able to read them.

Celia Jones
[log in to unmask]

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PARKINSON'S WEB SITES

NB:  Type these addresses in "Location" or "Go to" box at top of browser exactly as written, including punctuation, any captitalization, etc.  Hopefully, most of these addresses are correct.

How to Subscribe to Parkinson's Lists:

1. Parkinson's Information Exchange (Toronto based discussion group):  send an e-mail message to the following address:  [log in to unmask]    In the body of the message type: SUBscribe Parkinsn Your first name Your last name

2. CARE List for Parkinson's Caregivers:  send an e-mail message to the following address:  [log in to unmask]    In the body of the message type:
  SUBscribe CARE Your first name Your last name

Search Engines:

AltaVista:  http://altavista.digital.com
Infoseek:  http://www2.infoseek.com
Lycos:  http://www.lycos.com
Yahoo:  http://www.yahoo.com/search.html
WebCrawler:  http://webcrawler.com
Dogpile (uses every search engine): http://www.dogpile.com
Software for Internet Relay Chat:

There are three preferred software programs available that allow chat on the Undernet.  They are Pirch and mIRC for the pc and IRCLE for the mac.  The latest version numbers for Pirch are .92 for Win95 and .87 for Win 3.1.  The current version number for mIRC is 4.72.  Configuration help is available, once you make it to the #parkinsons channel.

IRCLE for the Mac is available at:  http://www.xs4all.nl/~ircle/

Pirch is available at:  http://www.mlode.com/~dvsme/pirch/

General home pages.

The Parkinson's Digest  Web page:    http://www.harfordweb.com/pd/
The Parkinson's Web:  (a "must-visit" site for anyone with an interest in PD):
http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/MainPDmain.html
Parkinson's Digest - Some of the wit and wisdom from our Parkinson's List:
http://ourworld.compuserve.com/homepages/PD_Digest
Awakenings (site developed by Roche for a world wide Parkinson's audience:
http://www.parkinsonsdisease.com/
Parkinson's Action Network:  http://www.pdaction.org
Parkinson's News from The Front Line:  http://www.cloudnet.com/~mandms
Welcome to James run by a UK citizen under private sponsorship:  http://james.parkinsons.org.uk/index.htm
Parkinson's Disease Teaching Presentation: http://www.clearlight.com/~morph/present/park0.htm
Parkinson's Disease Information Center:  http://www.rio.com/~jsake/pd/index.html
Neuroscience on the Internet: http://ivory.lm.com:80/~nab/


National Parkinson's Organisations.

The Parkinson's Association of WA Inc.:  http://www.quartec.com.au/parkinsons/
National Parkinson Foundation of Miami:  http://www.parkinson.org/
Parkinson's Disease Society of the United Kingdom:  http://glaxocentre.merseyside.org/pds.html
European Parkinson's Disease Association:  http://www.Shef.ac.uk/misc/groups/epda/cont.htm
Capital Chapter-National Parkinson's Foundation:
http://www.bev.net/community/spmurphy/parkinson/
Parkinson Foundation of Canada, Nova Scotia Division (Peter Kidd)
http://www.ccn.cs.dal.ca/Health/NSPF/nsd-pfc.html
Parkinson's Foundation of Canada:
http://www.parkinson.ca
Parkinson's Society of Ottawa-Carlton: http://www.ncf.carleton.ca:12345/freeport/social.services/parkinson/menu
Medical reference sites.

HealthWeb Home Page:   http://www.ghsl.nwu.edu/healthweb/
Edmund's Medical Reference:   http://www.li.net/~edhayes/ed.html
Jonathan Tward's Multimedia Medical Reference Library:
http://www.med-library.com/
MedicineNet - A FREE Medical Reference:   http://www.medicinenet.com/
Multilingual Glossary of medical terms:
http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
Research Medical Library:  http://www.mdacc.tmc.edu:80/~library/
MedPulse is Medscape's email newsletter informing registered
members of new content posted on the world's leading medical
Web site :  http://www.medscape.com/
InteliHealth / Home to Johns Hopkins Health Information: http://www.intelihealth.com
Medical World Search:  http://pride-sun.poly.edu/
Martindale's 'The Reference Desk:  Countries & International Services':
 http://www-sci.lib.uci.edu/HSG/RefHealth.html

Internet Resources for the disabled.
"Design Considerations: Readers with Visual Impairments" by Arthur
Murphy:
http://www.lcc.gatech.edu/gallery/dzine/access/
Empowerment Zone-excellent collection of computer and employment  info for the disabled:  http://www.smart.net/~empower
Medical matrix (deals with employment amongst many other medical topics: http://www.medmatrix.org/index.asp
National Institute on Life Planning for Persons with Disabilities
http://www.sonic.net/nilp
Eldercare Resource Centre: http://www.mindspring.com/~eldrcare/elderweb.htm
Sites for Seniors: http://ukanaix.cc.ukans.edu/~webmom/keln_sites.html
Internet Resources in Aging: http://www.seniornet.com/links.html
Caregiver's Inc.: http://www.caregivr.com/
Incontinence Products: http://ourworld.compuserve.com/homepages/ivy
Health and Disability Related Web Sites:
http://sargon.mmu.ac.uk/rindex.html

Research.

National Parkinson Foundation, Inc (U.S.)-A major Parkinson's research foundation:  http://www.parkinson.org/
Experimental Therapeutics Branch Research--Information Parkinson's disease and Alzheimer's disease:  http://etb.ninds.nih.gov
The Mulligan Foundation:  http://www.frostbyte.com/mulligan/parkinsons
Dana Foundation-Brain research:  http://www.dana.org/

Miscellaneous.

Exercises for the Parkinson's Patient: http://www.cnsonline.org/www/archive/parkins/park-03.txt
A Parkinson Glossary: http://www.cfn.cs.dal.ca/Health/NSPF/glossary.html
Parkinson's Disease Archives (Recent Medical journal articles and abstracts):
http://www.impulse.net/~gjohnson/
Neurosciences on the Internet-Index of neuroscience resources on the WWW:  http://ivory.lm.com/~nab/
Emory U. Health Science Center Library-Neurology index:  http://www.cc.emory.edu/WHSCL/medweb.neurology.html
Nature's Market-"Helpful" vitamins:  http://www.naturesmarket.com/parkins.htm
The Case of the Frozen Addicts-This is a book, a great read.  A real medical mystery story about the discovery of the discovery of the MPTP model:  http://www.catalog.com/web/frozadd/
RxList-The Internet Drug Index:  http://www.rxlist.com/
Parkinson's Patient at Home:
http://www.cnsonline.org/www/archive/parkins/park-02.txt
Quackwatch (guide to health fraud, quackery and intelligent decision making):
http://www.quackwatch.com/

Some Home Pages of List Members:

Martin Bayne:  http://www.mr-longtermcare.com
Marvin Giles (with photos of people on #parkinsons chat channel):  http://rampages.onramp.net/~mgiles/
Peter Kidd:  http://www1.ridgecrest.ca.us/~rfvetter/
Bruce Warr:  http://umbc.edu/~warr/
Simon Coles, PD List Member, has  personal home page.  Includes book "An Old Age Pensioner at 18", info on "PD CD" and more:  http://www.nipltd.com/parkinsons/
Kathrynne Holden, MS, RD, Editor-in-Chief, "Spotlight on Food--nutrition news for people 60-plus":
http://www.fortnet.org/~fivstar and NUTRITION TOPICS copy-ready handouts:
http://www.dietetics.com/class/fivstar/

Pharmaceutical Companies.

Glaxo Neurological Centre (UK)-Non-medical advice and information:  http://www.connect.org.uk/merseyworld/glaxo/
Parkinson's Program-CytoTherapeutics.Inc, pre-clinical testing of 'NeuroCRIB' implant:  http://www.cyto.com/parky.html
Parkinson's Disease - Home Page-SANTEL:  http://www.santel.lu/SANTEL/diseases/parkins.html
Merck Manual:  http://www.merck.com/!!rE5GA0dm2rE5GD26hJ/pubs/mmanual/

Surgery/hospitals.

Pallidotomy information (Dr. Iocano's website): http://www.pallidotomy.com/
Parkinson's Victory-Pallidotomies at Loma Linda, CA:  http://www.xfdm08.aps1.anl.gov/parkinson_victory.html
Dalhousie University Medical School, Div. Of Neurosurgery (includes update on Halifax Neuro Transplantation Program (Canada):  http://www.mcms.dal.ca/dnts/mainpage.html
Neurotransplantation Research Laboratory (Harvard):  http://neurosurgery.mgh.harvard.edu/oi-lab.htm
NYU Center for the study and treatment of Movement Disorders (info on thalamotomy and pallidotomy, case histories):  http://mcns10.med.nyu.edu/CMD/CMDmain.html
UCLA School of Medicine-PET scans of Parkinsonian brains; lots of graphics:
http://www.nuc.ucla.edu/lpp/clinpetneuro/parkinsons.html


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PARKINSON'S AND THE INTERNET

By Celia Jones, B.A., Dip.Ed.
Upwey High School
1451 Burwood Highway
Upwey, Victoria 3158

What is the Internet?

The Internet was developed in 1969 by the US Defense Department during Cold War years to prevent the military activities coordinated by computer network from being destroyed by nuclear attack. It is the largest network of computers in world, allowing millions of computers around world to link with one another to share information and resources. Computers, modems, telephone lines, ISP's (Internet Service Providers) are used to link participating computers.

Why is the Internet important?

You can communicate about PD and make friends with people all over the world via e-mail (electronic mail).
In addition, you can get information about the disease from international Parkinsons organisations, medical Websites, academic libraries, as well as access medical and scientific journals and newspapers.

It is also possible to create a presence and opportunity for activism in promoting public awareness of Parkinsons Disease via the Internet.

When I was diagnosed with Parkinson's eight years ago, I felt quite frustrated in my attempts to locate information about the disease.  I thought it important to educate myself as much as possible about this strange disease, and  to take responsibility to participate in deciding the best course of my treatment.
However, when I discovered the Internet, I was amazed by the amount of information I was able to easily access from my home.

For example,  the American National  Parkinson Foundation has a sizeable Website and sent me educational information and newsletters free of charge..  The Neurology Hospital at Harvard University in Massachusetts maintains an extensive Parkinson's disease information Website.

Some of Australia's state Parkinson's support groups like that of Western Australia have established their own Website..and greatly raised their profile in Australia and other countries.

There are many medical and academic sites for the researchers with hundreds of articles and book chapters on Parkinson's.

The Parkinson's Mailist also serves as a huge support group for PWP (People with Parkinsons).  A Toronto, Canada University maintains the list with over 1500 subscribers scattered all over the world, from which I receive up to 70 messages a day.

>From this list developed the Parkinson's chat channel on what is called the "Undernet," where people use free software called PIRCH available on the Web to chat on a keyboard any time of day or night with other "Parkinson's folks" and often form close friendships with PWP and their carers in other countries..
I've read of several instances where people actually exchange visits with  these  Internet "chat friends."

All that is needed is a reasonable computer (eg. At least a 486 PC), a modem, a connection to an ISP (Internet Service Provider), some software (eg. Eudora e-mail, Netscape or Internet Explorer, PIRCH) and, most importantly, a "Computer Nerd Friend" to help the 'computer challenged' person set up Internet access or download information, etc.

E-mail

E-mail (Electronic Mail), a method of sending messages to one or more people via computer networks, is probably the most popularly used forms of Internet communication. E-mail makes it possible to have immediate transfer of text, sound, picture files from sender to recipient(s).  You can send and receive  E-mail via a modem, an ISP connection  and  a free program you can download from the net called Eudora.

Mailing Lists

Anyone with ability to send and receive e-mail through the Internet can subscribe to a mailing list/listserve, which is a group of people with a common interest who communicate via e-mail.  There is a Toronto based Parkinson's Information mailing list that is the most prolific on the Web and has a world-wide audience in excess of 1500 people. Your message can be addressed to the entire list of members or individual subscribers of the list; over 400 e-mail letters are posted to subscribers weekly.

What do you get out of a Parkinson's Listserve?

For PWP's,  the Parkinson's Mail List is, to quote a subscriber "a home where there is understanding, nurturing and information." You will find information on latest Parkinson's research, treatment and medication. The list
provides contact for patients/caregivers confined  at home or distanced from information.  It is a forum for  the exchange of personal advice and tips on individual management of Parkinson's. Sample Discussion Topics on the Parkinson's List include:
* Nutritional needs of a PWP
* Effects/efficacy of specific medications
* Various forms of surgical treatment
* Advice on Parkinsons and jobs
* Suggestions to how to deal with symptoms
* Alternative medical treatments
* Description of latest clinical trials and research
* Poems and other creative expressions

>From a survey of list subscribers come the following comments about what members gain from the list:
a. Information related to medications, medical and surgical procedures, research and legislation. Also internet resources and archived information. These sources enable us to talk to our doctors more productively than was possible before we joined, for example.
b. Other viewpoints and opinions broaden ones horizons. It is helpful to be aware of different ways to look at a problem.
c. Humor to lighten the spirits and inspiration from the poems and prose of others who walk the same path we do. Encouragement when spirits are low.
d. support: we cry with each other, we laugh with each other, and we answer each other's questions better than any set of doctors could (besides there are many doctors, nurses, librarians, and researchers on the list) information:  the information is invaluable and could not be given from any other source with such authority
e. provides help to patients/ caregivers confined or distanced from
information.
f. To be able to share things from list with our support
group members and family ,near and far away; the opportunity to facilitate the CARE list for Caregivers of PWPs, which provides further info and support; the joy of being connected with so many people in so many places, and the fun, fellowship, poetry, philosophy, legislative advocacy, and developing of personal friendships "offlist" with some members. It is good to be able to feel "connected" rather than "isolated."

There is also the benefit of Political "Activism" or uniting of people with an involvement in Parkinson's Disease to increase community awareness of the disease,  to support government funding (i.e. Udall Bill in US to allocate $100 million for Parkinsons Disease education and research) and facilitate development of new medications and treatment.Venue for organisation of the world-wide Unity Walk  and creation of the largest Ball of String in Boston to increase public awareness of how wide-spread the disease is. Subscribers are encouraged to enlist support of high profile media figures (eg. Christopher Reeve, Mahammed Ali, Janet Reno, even Oprah Winfrey)as well as liaise with news media.






How  Do You Subscribe to a Parkinson' Mailing List?

* To subscribe to the Parkinson's mail list called Parkinson's Disease Information Exchange Network, send an e-mail to:  listserv@ listserv.utoronto.ca  Do not put a subject in your message.  In the body of the note write SUBscribe PARKINSN Your first name Your last name.
* To subscribe to the Caregivers List, send a request as follows to [log in to unmask]  Send the following message:  SUBscribe CARE (Your full name)
Once you have subscribed, you will receive an e-mail message with complete information and instructions about the list.

Parkinson Chat Channel

This is a chat in "real time" to people on the #parkinsons channel using an  Undernet server any time of day..
Three preferred software programs are available that allow chat on the Undernet are Pirch and mIRC for the pc (available at http://www.mlode.com/~dvsme/pirch/ and IRCle for the mac. (available at http://www.xs4all.nl/~ircle/

John Cottingham from Parkinson's  list discusses the Chat line:
"There are times when we would like to talk to someone who is going through what we are feeling.  Email is fine but conversations allow follow-up in the real time.  Sometimes acquaintances made in this fashion turn into friendships. The #parkinsons channel is an example where you can find Parkinson's folks with similar neurological disorders and caregivers.  The chat medium uses the keyboard to chat.  Some are slow only to be faster...and some of the faster become slower...depending on the med cycle.  This is understood by all...slowness or typographical errors are expected.  There is no pressure...only friendship."

World Wide Web
:
The Web combines text, graphics, multimedia and links between files to create a giant "web" of accessible information.Imagine a single copy of every magazine in the world was laid on the floor of a huge building. Imagine that pieces of string connected each magazine to relevant information in other magazines. The result would be a giant web of text and graphics. That pretty much what the Web is like.

Netscape and Internet Explorer are browsers with Search Engines  like Alta Vista, Lycos and Yahoo that help you navigate your way through net and locate information.

Web or 'Spidery' Definitions

* Web page/home page: text document on the Web that may include pointers to graphics files & other Web pages
* Browser (Netscape or Internet Explorer): program used to look at World Wide Web documents
* Download: Retrieve a file from another machine, usually a host machine, to your machine

Types of Useful Websites for PWP (People with Parkinsons)*

* Home pages of individuals and support groups
* Surgical and hospital websites
* Pharmaceutical sites
* Health and Medical Websites (eg. IntelliHealth)
* General informational sites (eg. Harvard Neurosurgery)
* Research (eg. Nat'l Parkinson Foundation)
* Miscellaneous (eg Eldercare sites)







Some Problems with the Internet

* Sheer volume of material makes it difficult to sort through
* Need to be cautious of medical advice given by non-professionals or biased people pushing products for financial gain
* Possibility of newly-diagnosed PWP becoming depressed at reading about all the problems of advanced Parkinsons patients.
In Conclusion

To sum up,  E-mail, the Parkinson and Caregivers Mailing Lists, Chat Channel, Web Pages and Websites are valuable means of communication on the Internet which can broaden the individual PWP's world, dispel the feeling of isolation and invisibility, provide supportive, understanding friendship and help them deal with PD related emotional and physical problems.  The Internet can empower the PWP with up to date information and establish a greater awareness in the community of the disease and need for research into new treatments and an eventual cure.

*URLs (Uniform Resource Locator or addresses) of some of these Websites contained in handout.

For me and  many other PWP, it is more than the digital components of a computer.  Barb Mallut of the listserve found this poem on the Net:

Every night I lie in bed
This little prayer inside my head
God bless my mom and dad
And bless my girl and boy
And take care of my husband
He brings me so much joy
And God, there's just one more thing
I wish that you could do
If you don't mind me asking
To just bless my puter too??
Now I know that its not normal
To bless a small machine
But listen just a second
And I'll try to explain.
You see, that little metal box
Holds more than odds and ends.
Inside those small components
Rest a hundred loving friends.
Some, it's true, I've never seen
And most I've never met
We've never shaken hands or
Ever truly hugged, and yet
I know for sure they love me
By the kindness they give
And this little scrap of metal
Is how I get to where they live
By faith in how I know them
Much the same as I know you.
I share my life with all of them
So if it's OK with you
Just take an extra minute
>From your duties up above
To bless this little hunk of steel
That's filled with so much love.


My Biography

I earned a Bachelor of Arts (Honours) in French from the University of California, Berkeley  and a Diploma of Education from Monash University.  I have taught in both the private and government secondary school systems for over 20 years, working in the library for the past 5 years, where I developed the computer resources, including CD-ROM and Internet.  I have taken courses in Learning with the Internet as well as Facilitator's Course in teaching Learning with the Internet courses, and  I have conducted courses for teachers on the Internet

I was diagnosed with Parkinson's Disease 8 years ago and have been until recently an active member of the Parkinson's Association of Victoria, editor of the Newsletter and member of Committee of Management.  Also, I'm a member of the Young Onset Parkinson's Group in Victoria.

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