Subject: Getting the Most out of the Parkinsn List
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 provider, Barbara knows it, whether she wants or not. Spammers are a
fact of life on the internet, by commenting and complaining about it to
others using the list as a means of communication adds to the useless
bandwidth. When in doubt, take it to e-mail, not the list.
When you pickup a newspaper or magazine, do you read every story? Most
people pick and choose their favorite topics. If you're waiting for your name
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 opinion 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 the use of the
listserv tools are posted monthly. If you are not interested in reading
it, skip and delete it. Again, the scope of the parkinsn list is broader than
you think.
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 28 countries.
Who pays for this?
Our host is the University of Toronto who provides the hardware and software
to connect to the Bitnet Network. Individual institutions and grants pay for
this network. Your mail from the listserv is sent to a bitnet gateway at the
University of Buffalo 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 this option:
Mail= Index
An option exists for those who have limited abilities to receive the
quantities of mail normally found on the list. Mail= Index uses a special
file on the listserv that saves the Sender, Subject and Size of every
message sent to the list from 00:00 in the morning to midnight the same
day. After midnight, this index or list of messages is sent to subscribers
who have selected this option. Special instructions are posted to the
bottom of the Index on how to retrieve the messages of interest...These
are DIFFERENT from any other instructions on how to interact with the
listserv in this article. THE INSTRUCTIONS FOR RETRIEVING MESSAGES,
ATTACHED TO THE DAILY INDEX WILL NOT WORK FOR 99% OF PARKINSN LIST MEMBERS.
MAKE NOTE OF THE NEW INSTRUCTIONS IN THIS SECTION IF YOU WANT TO USE THIS
OPTION.
Example of Daily Index:
From: Automatic digest processor <[log in to unmask]>
Subject: PARKINSN Index - 3 Sep 1995 to 4 Sep 1995 - Unfinished
To: Recipients of PARKINSN indexes <[log in to unmask]>
X-UIDL: 810232611.000
X-status: R
Index Date Size Poster and subject
----- ---- ---- ------------------
05103 09/03 65 From: "RONALD J. KESSING" <[log in to unmask]>
Subject: Hello from new subscriber
05104 09/03 29 From: Helen Ormsby <[log in to unmask]>
Subject: Re: double spamming
05105 09/04 39 From: "Jeffrey R. Romanyshyn" <[log in to unmask]>
Subject: Re: double spamming
05106 09/04 24 From: "Jeffrey R. Romanyshyn" <[log in to unmask]>
Subject: IV-Immune Globlumin Treatment (sp?)
05107 09/04 8 From: Catherine Ryan <[log in to unmask]>
Subject: Re: Blue Glasses Tech Info
05108 09/04 8 From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Blue Glasses Tech Info
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
The sizes shown are the number of lines in the messages, not counting
mail headers. The numbers under the INDEX column are message numbers.
INSTRUCTIONS ON HOW TO RETRIEVE INDEXED MESSAGES FOR THOSE ON THE INTERNET
--------------------------------------------------------------------------
From the internet, in order to retrieve ALL or PART of the messages in
the index, use the following method.
Send a message to:
[log in to unmask]
In the body of the message put or paste the following:
//DBlook JOB Echo=No
Database Search DD=Rules
//Rules DD *
select * in parkinsn
print all (THIS IS WHERE YOU ENTER THOSE INDEX NUMBERS,
SEPARATED WITH A SPACE, THAT WERE IN THE FIRST COLUMN OR A RANGE OF
NUMBERS, SEPARATED WITH -)
The example was 5103-5108 for all the messages or individual Index #s
if you only want some of them.
print all 5103-5108 To receive all the INDEX #s in that range
print all 5103 5108 To receive INDEX # 5103 and 5108
---------------------------------------------------------------------------
To set your mail option to INDEX send a message to:
[log in to unmask]
In the body of the message put:
set parkinsn index
---------------------------------------------------------------------------
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."
Many times, it is far easier to grumble than contribute or be near-sighted
rather than far-sighted. Let's not let our parkinsn list grumbling discourage
the 'workers in the field', given our scope.
What to do if I can't keep up with the volume.
Subscription is not required to use the listserv tools. Signoff the parkinsn
list and use the tools to browse and order messages of interest.
Instructions on how to do this were posted in a message whose subject was:
Finding information in Parkinson Archives by E-mail 9/5/95.
John Cottingham "KNOWLEDGE is of two kinds: we know a subject,
or we know where we can find information upon it."
[log in to unmask] Dr. Samuel Johnson
