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Parkinsonian Links
How Support Group List Was Generated
Gathering information for the Support Group lists is not a simple job. Nor is it a precise one. For each group, changes could include the meeting day, the meeting time, the facilitator's name, and the facilitator's phone number. A new group could br started. or an old group could disappear.. With over a thousand groups in the database, we would expect that there would be few days when there wouldn't at least be one change.
One change a day: How do I learn of it? Very rarely will someone email me to tell me that something has changed. If they have a web site of their own, they will probably change it - when they get around to it- which may be the next day - or maybe the next year. If they belong to a larger organization, like NPF or APDA, they will probably report it to them - and they will change their web page - all in good time.
I've decided that all of the information that I want to put on the Web is the date, the time, the contact, and the contact's phone number. This is sufficient for a person to find a meeting. The contact's phone number, by the way, may be a home phone or a work phone - there's no way to know for sue - or it may the phone at the facility where they meet. Every so often I will go through all of the listings of support groups that I can find and try to update the list. When I do, I find no change in a number of groups. Those are easy to handle. Other groups may have the meeting time different but the contact information unchanged - and it is easy to assume that the meeting time was changed, and I take that into account in the list. But it's not always that simple, and if I err, I would rather be on the safe side by not deleting the group that doesn't exist.
The lists that I take data from are from NPF, APDA, various regional support groups, support group web pages, and newsletters. Newsletters will generally be quite accurate, but there are glaring editorial and typographical errors in the list from NPF, in particular. This is not to say that I don't introduce more than a few of my own. A classic case was a support group in Ontario, Oregon, shown with the facilitator in area code 705 (province of Ontario, Canada), when the facilitator actually had a phone number in Idaho, across the river from Ontario, Oregon. That one took an hour or more to figure out. I can't afford to do that for many groups.
What's the point of this? There may be a lot of errors in the Support Group lists. But there are a lot of good listings in it too. Don't be dismayed if the first phone call that you make is not to the right person or if it yields a wrong number. If the person you call is no longer a member of the group, chances are that they can put you in touch with someone who is.
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like this must add "Disclaimers apply." Revised 13 February, 2004 |  | |
