Lists in general are not ran in a democratic way. Lists are owned and
with that ownership come supervisory tools which can modify membership
status. Onerous e-mail addresses can and are deleted with the automatic and
discretionary tools.
Don't confuse the parkinsn list with others ran by companies who have a paid
employees that handle the administration. Barbara, like you and I are
unpaid VOLUNTEERS. Barbara, our list-owner, handles the administration
affairs of parkinsn list. Barb, as we lovingly call her, describes herself
as; "Rather than saying that I am a home-maker, perhaps we could change that
to wife, mother, grandmother (I PROMISE I won't brag about my grandsons),
and, for that matter, I'm a daughter, too...my mother is 91."
Some days she gets hundreds of error messages from the listserv on who has
bounced mail. When you get sloppy in reading and downloading your mail from
your internet provider, she knows about it.
When you pickup a newspaper or magazine, do you read every story? Most
people pick and choose their favorite topics. If you're reading a magazine
while waiting to be called in the doctors waiting room, a 15 page article
on Fava Bean futures in Egypt might take more time than you have, so you
skip it. Reading your daily parkinsn list mail uses the same principle,
skip and delete it if you are not interested in it. The scope of the
parkinsn list is much broader than you think.
Some prefer chatty anecdotal opinions, rather than the results of the
latest study. Latest studies and abstracts posted to the archives allow
study and research using the listserv tools. Revised instructions on
searching the Parkinsn archive are posted monthly. If you are not interested
in reading it, skip and delete it.
What is the Scope of the Parkinsn List, Who Are We?
We have been diagnosed with Parkinson's, Parkinson's Plus, parkinsonian and
other movement disorder diseases that may manifest parkinsonian-like features
and provide services to care-givers, friends and support groups. We are news
organizations, drug companies, and equipment manufacturers that treat these
diseases. We are family physicians, psychiatrists, psychologists,
neurologists, neurosurgeons, medical and nursing students, researchers,
care-givers and friends. We live, work and die in 32 countries.
Who pays for this?
Our host is the University of Toronto who provides the hardware and software
to connect to the Internet. Individual institutions and grants pay for
this connection. Your mail from the listserv is sent by common carrier
which has connections to the major common carriers of the world which
distribute the internet. Every connection point on the internet pays for
this privilege. Your internet provider pays this fee also. If you use a
"freenet" taxes or donations are used to pay this fee. If you use an
Internet Service Provider (ISP) it is included in the subscription
fee you pay them. If your ISP is a long distant phone call away from you,
you pay long distance charges.
On-going contributors to the parkinsn list pay for copying, faxing,
converting written word to electronic word, out of their own pockets,
regardless of their own circumstances, without remuneration. Vested
interests who post here receive remuneration either directly or indirectly
from their sponsors.
How can I get the most out of the Parkinsn list?
HARDWARE:
Generally when I see comments that it takes 33 minutes to download mail, I
know that someone is trying to use something other than a 14.4 or 28.8 modem
to connect to the internet. If your ISP only has 2400 baud connect capability
and your modem is capable of 14.4 or 28.8, run..don't walk to another ISP.
If you have a 14.4 modem, a 28.8 modem will transfer a mail packet TWICE as
fast. Depending on your circumstances, a slow modem can cost you more money
in connect time and long distance charges.
Bulletin Boards vs ISPs in the U.S.
If you like the security of a bulletin board, where the management can and
does read your mail, Prodigy, Compuserve and AOL are available. If you like
to be limited in what internet resources are at your disposal and enjoy being
over-charged for those that interest you, the top three are for you.
If you don't want to pay anything but will settle for e-mail, freenets
in some areas of the country are available.
Unlimited local access to the internet using ISP provided software that runs
on your own machine is available for as low as $15 per month in some areas.
The same level of access can cost up to $50 per month in other areas.
Shop for your best value. Plans that provide 40 hours, prime-time access a
month for $20 or less can be the most cost effective since most have free
hours after midnight to 8 AM and weekends. Since there are only 22 or 23
working days in a month, your primetime access can average as much as an
1 1/2 hours a day. Ask your ISP the hours of the day that they consider
prime-time.
USING THE LISTSERV SUBSCRIPTION OPTIONS TO MAKE YOUR MAIL MANAGEABLE.
If you are a parkinsn subscriber and have a slow modem, there is a mail
subscription option that can make your life more manageable.
The following is a complete discription of these options:
There are currently two mail subscription options, mail and digest.
WHAT IS THE MAIL OPTION?
New subscriber's have their mail option set to mail automatically. Messages
sent to the list are redistributed to the members shortly after they
are posted. Mail arrives at your mailbox around the clock, since we are
a global community and someone is always 'up', posting to the list.
Each message is individual, to be downloaded and deleted or saved by your
mail software. Deleting the messages in your ISPs mailbox when you
download them, frees up space for the next days' messages. Enable that
option in your mail software.
The mail option is set by sending a message to:
[log in to unmask]
In the body of the message put THREE WORDS:
set parkinsn mail
Within a few minutes you will be notified that your subscription option
has been changed to mail.
WHAT IS THE DIGEST OPTION?
When you have the digest option, selected, the days' mail received at
the listserv is saved until about 2 a.m. Toronto, Ontario, Canada time.
This mail is saved as a digest. The digest has a table of subject lines
contained in the digest, followed by those messages. The digest sent by
the listserv may not be the same size as the one that arrives in your
mailbox. Some ISPs have size limitations on digests and truncate or cut
off the part of the digest that exceeds their limitation.
What is the advantage of the digest?
If you subscribe to more than one list, you may want to keep the messages
separated. The digest option allows this by compartmentalizing the daily
messages.
The digest option is set by sending a message to:
[log in to unmask]
In the body of the message put THREE WORDS:
set parkinsn digest
Within a few minutes you will be notified that your subscription option
has been changed to mail.
HOW DO I KNOW IF MY MESSAGE GOT TO PARKINSN?
New subscribers to parkinsn have as part of their subscription settings,
the following two settings: REPRO = NO and ACK = NO
The repro setting determines whether you will receive a copy of your
message that was posted to parkinsn as it is being distributed to
the members. The Ack option allows one posting to parkinsn to receive
an acknowledgement message from the listserv when the distribution occurs
rather than a copy of the message.
To set your subscription to receive COPIES of your messages to parkinsn,
send a message to:
[log in to unmask]
In the body of the message put THREE WORDS:
set parkinsn repro
In a few minutes, you will receive an acknowledgement from the listserv.
With this option set, you will receive a copy of your next message to
parkinsn.
To set your subscription to receive ACKNOWLEDGEMENTS when your messages
to parkinsn are distributed, send a message to:
[log in to unmask]
In the body of the message put THREE WORDS:
set parkinsn ack
In a few minutes, you will redceive an acknowledgement from the listserv.
HOW DO I ELIMINATE WINMAIL.DAT FROM THE MESSAGES I POST?
How Do I Post From MS Exchange?
When posting from MS Exchange, you need to be sure that your messages do
not contain formatting information that looks like junk to most others
on the list and do not contain return-receipt information. That's because
MS Exchange normally sends embedded formatting information with every
message.
The solution is to create a special address book entry for use when
posting to the list, and to_always_ use that entry whenever posting to
or replying to the list.
A) CREATING THE PARKINSN ADDRESS BOOK ENTRY:
1.Open your address book (Ctrl-Shift-B)
2.Create a new entry (Alt-F, Alt-E)
3.Select the entry type (Internet Mail Address) and press ENTER.
4.For the "Display name," put "PARKINSN".
5.For the E-mail address, put "[log in to unmask]"
6.Make sure that the box "Always send messages in Microsoft Rich
Text Format" is NOT CHECKED.
7.Press ENTER.
B) WHEN POSTING TO THE LIST:
1.NEVER simply reply to a message from the list. If you do, you will
end up posting a message with embedded information junk.
2.ALWAYS erase the "To" field and enter "PARKINSN" for the "To"
address.
3.Enter other "To" addresses, as desired.
4.Proceed with posting your message normally.
What is the Potential for the Parkinsn List?
On democracy, our founder and benefactor has these thoughts; "It is a
democracy in that we have the choice to join or leave; to contribute or not;
to read or not read, etc. I think of it more as a service that I give to
those of us who deal with pd in one way or another. I GET far more than I
GIVE.
Less than a month after the list started, a dear friend of mine sent me a
message saying "It sounds as though your idea of initiating a PD network was a
way to meet a lot of needs that hadn't been identified until the network
started. This could become a self help group with an awful lot of knowledge
and power,and it may lead to some changes in research and treatment."
Whenever the 'housekeeping' part becomes a lot of work, I read that."
John Cottingham To search the Parkinsn archive, send search requests
to [log in to unmask] with Archive Search as the subject.
LibraryH Search of the Subject: line, From: line and Body are
possible. Look for "Current Topics...." message for
[log in to unmask] Articles and Studies available by e-mail.
