Pieno
 

Anyone know the history on this very impressive site?
http://www.parkinsons-information-ex...rk-online.com/

Re: Pieno
 

PIENO is an acronym of Parkinsons-Information-Exchange-Network-Online. It is the online version of the Parkinsn email list that is distributed by the listserv at the University of Toronto. Barbara Patterson and John Cottingham share "ownership" as administrators.

We got started in 1994 as a collaborative effort of college personnel and a few doctors who were interested in movement disorders and few nurses and patients and caregivers. Gopher was the Google of the day and you almost had to be a programmer to interact with the listserv.

Being pioneers we used the government network that connected a few universities and AOL etc to connect to it.

Gopher was a search mechanism that was about as advanced as the index cards at the library and most often directed you to go to the library or buy the book. It was not very informative.

The listserv was in its infancy but it was a method where like minded people could converse to a group with one email. The listserv did the redistribution.

Barbara and I had a vision that someday someone would like to browse our ramblings about the state of our discussions for research. Like I said before it took almost a degree in computer languages to access the archives which was the repository of all our list messages.

In the meantime we were living the walk of movement disorders and some of the pills were not agreeing with us. Of course all was not sweet and sour because our group was diverse like society, some were angry, some were depressed, some were dyskinetic, some were akinetic and some lost their ability to open their eyes and some were awake all the time. Our Parkinsn postings daily expressed all these feelings.

We had and continue to have Angels among us. Margaret Tuchman is one such Angel. She helped a group of us to produce the Parkinsn List Drug Database so that we could look up the drugs that were used treating us and the side effect profiles. Mrs Tuchman has Parkinson's disease and founded the Tuchman Foundation that raises funds for Parkinson's research. She had a staff that assisted us.

I manually responded to listmember requests for the drug information and also how to access the archive. There had to be a simpler way.

To make a long story short, in 2000 I provided a website that put all of this previously inaccessible "stuff" on the web.

Some of our 1994 members are still active participants, may God bless them, and a new group always emerges to carry the torch.

The searchable index of everything you could imagine about drugs or movement disorders and videos is at:

The other link on the previous posting is the main gateway into the site but it is easy to lose your way since there are 131,000 pages.

For a 70 year old essential tremor patient with bilateral DBS I still do pretty well.

John Cottingham :)

Amazing
 

That is simply amazing! My hat's off to you and your compatriots. A fine piece of work. Have any provisions been made for its preservation? Having gone through the meltdown of "BrainTalk" I worry about such things.

The Future
 

Reverett, this is a long winding road we're on. If money or religion could make us whole, it would have happened by now. Who knows, it could happen tomorrow.

Email lists and bulletin boards are become 'long in tooth' with the advent of social networking and instant 'news'.

What will evolve after NeuroTalk and Parkinsn?

Historically while email was in it's infancy before chat, listservs and bulletin boards were the most popular in numbers of subscribers.

As full search grew, community growth reversed because you could go directly to the answer you were wanting.

Privacy and copyright issues have also had a damping effect. Listowners or moderators became responsible for everything posted by subscribers and threat of lawsuit for copyright infringement became common place. What a subscriber reveals today through their postings may not be what they want for the public to know in future years.

I have had all of these issues in attempting to do the "good". Service to the community is fraught with all kinds of pitfalls. At a point, without some mechanism to fund administration I don't see a unlimited future for either PIENO or Neurotalk.

It is difficult to predict the future when your condition becomes politicized but by posting about Parkinson's puts a public face on the issues we face.

John Cottingham

What a great job, Mr. Cottingham. Few places have been so important in the history of Parkinson's. 20 years of valuable information smothered by a hostile world. It will not be forgotten and will always be recorded in English (but also in Spanish).

I find it extraordinarily valuable to be able to read the concerns and responses of patients, families, doctors, since 1994 (the same year my father was diagnosed).

Those of us who now enjoy Google, Pubmed, Internet Archive, etc, cannot imagine how difficult it was to find valuable information in those years

PIENO (Parkinsons-Information-Exchange-Network-Online):

P-I-E-N-O Parkinsn Archive Treasures Collection about Parkinsons Disease

LISTSERV 16.0 - PARKINSN List at LISTSERV.UTORONTO.CA

Thank you for everything.

(JMR, "Parkinsons here and now")