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