hi all

At 21:52 1999/11/10 EST, linda wrote to me, in part:
>Janet, You are providing a marvelous, invaluable service to
>thousands of people and your efforts do not go unrecognized...

credit for the list's existence goes to barb patterson
list-mom and founding-mother [!]
i've been helping her with the nerdish stuff only since july this year
when she took her first holiday away from 'da list' in
six count'em six years

i agree it's a marvellous if not miraculous resource
and cannot imagine coping without it
i.e. without all of you

>I must just be missing something about the way this list runs,
>as opposed to other listservs, no criticism or disrespect
>intended. To each his own....

each list develops its own 'personality' i suppose
there are lots of different ways the software can be set up
and which affect the list activity in a very direct way

in this case, since 'exchange' is the name of the game
the default setting for any replies to postings on the list
is set to 'reply to the list' rather than 'to the individual sender'

we tried it the other way for a few months at the beginning of the year
but switched back to 'reply to the list' so as to retain
the maximum benefit from 'sharing'

which is why i tend to answer non-confidential messages
like this one via the list
i figure someone out there might benefit from eavesdropping
if not now, maybe later, while digging in the archives

there is an 'over-ride' feature which i have activated
so that the 'reply to' is consistent through all e-mail software
[some of them follow the internet rules and some sort of do]

>Sorry. I did not realize AOL has a different set-up than
>other e-mail  headings. Interestingly enough, I had no
>intentions of putting the response back to the list,
>but only to the sender. Somehow it still got sent to the whole
>list...which was exactly the point the sender was making...

i was an AOLian for a little more than a year
after having been 'etherized' on the net for a few years
that experience was an eye-opener

there are a lot of internet and e-mail 'conventions'
which don't seem to be written down anywhere
[i guess one is supposed to know them by osmosis]
which i didn't understand until they went
astray or askew with my AOL mail

>It's not the postings on the list that are annoying, in fact,
>for the most part they're quite beneficial and it's both
>reassuring and thought-provoking  to hear what others have to
>say. Within 24 hours of signing up, I've learned much and been
>personally contacted with helpful offers and information....

good

>But, being new to the list, it's frustrating  to open a number
>of the e-mails and  have no way of knowing ahead of time that
>they're pieces of an ongoing personal conversation. I felt like
>I was intruding...

yes
it is like jumping into the middle of several conversations at once
but it's not called 'intruding'
listening in while you get your bearings is called 'lurking'!

i don't mean to sound patronising so ignore the following if it's old news
but it may be new news to some newbies:

E-MAIL CONVENTION NUMBER 202:
If a message subject header line has a Re: at the front of it,
it means that the message is a REply to a previous message;
i.e. part of a subject 'thread' of messages.
If there is no RE: in the subject header line,
that message is the start of a newly introduced subject.

>Regarding my ties to PD....
>My 79 year old mother has PD and lives quite a distance from me,
>so there is no way I can look in on her or go to the doctor with her.
>She tries to protect me by not giving me the whole story. For years,
>she actually lied to me about her apparent PD, because she didn't want
>me to worry...

i will play amateur psych here and wonder out loud
if she is 'ashamed' to show her true pd condition to anyone?
it isn't a rare attitude; i even know about it myself [!]

>I had no way of knowing what she was telling doctors and
>visa-versa. And she admits, herself, that she doesn't ask
>questions of doctors...

if she won't or can't, then someone has to, in my humble opinion.
there is still too much ignorance out there in all fields
about how to deal with it

>She is coming to visit me for three weeks-soon- because her
>companion-"caretaker" (also 79) is going on vacation. Since her
>condition is advancing quickly and she is finding it difficult
>to find the right balance of meds, and her falls are increasing...

oops
alarm bells are ringing

when did her condition start 'advancing quickly'?
this is not normal for pd
especially when it has been progressing more slowly previously

the speed-up has to be caused by something;
what change was made then
in her meds, her diet, her lifestyle, her stress level etc?

>I felt the best thing to do was sign up and find out
>everything I could. I just joined the CARE list and I have
>started to surf websites of major orgs. for research....

that is the best thing you could do
knowledge is power

>Her companion is a sweetheart and I'm extremely grateful
>that he lives near her and looks after her, but I can't
>expect him to take full responsiblity.  I must become the
>educated one in the family. There is no-one else. I can't
>possibly be a good caretaker if I don't learn all I can...

yep
she's lucky to have you

>Already, having been on the list only a few days, I learned
>enough about the meds to at least ask my mom specific questions
>about what she is taking. It was the first intelligent conversation
>we had about her condition in all the years since the diagnosis....

that's good news!
the med regimen details of 'how much' and 'how often' are critical

timing is all
just like tuning up a powerful engine

>so I really do appreciate the list.
>Peace.  Linda

ditto and ditto!

janet

janet paterson
52 now / 41 dx / 37 onset
e-mail - [log in to unmask]
web-site -  http://www.geocities.com/SoHo/Village/6263/