>>>>
Subject: THE LIST
To the Foleys,
As a Pilgrim of fairly short duration to this list, with your permission,
I'd like to make some observations from MY perceptions.
When Parkinsn@listserv came to my attention, I was impressed with the
potential of communicating with fellow PDers from different parts of the
world. After I joined, I remember receiving instructional mail which
recommended that I write about myself to introduce myself to LIST
members.
Just the possibility of sharing "me" with strangers, when I hadn't really
done it with so many close to me, was overwhelming. As a result, I spent
a good deal of time observing.
I encountered friendly bantering, some really serious bickering, a
constant delivery of educational briefings and URL's, and unquestionably
sincere boosting of spirits. Wherever the LIST reached, these people who
appeared to know one another were dedicated to learning the latest and to
getting each other through another day.
Now to me, the LIST is like moving into a new neighborhood. Some people
greet and welcome; others hold back. Some are protective, even
suspicious. Some seem to have been in the same clique since they began
communicating. It's possible newer members have to wait a bit before
acceptance sets in.
Frankly, I wasn't sure what my reception would be. One afternoon,
something someone wrote influenced me enough to do a long biographical
sketch similar to yours below. A welcome here, a comment there followed.
Shortly after that I began to respond to those emails that, in some way,
had an affect on me. In turn, others have shared their thoughts,
concerns even memories. Hopefully, we share respect.
What I have recognized is that many list members suffer in the extremes,
and for many it has been a "many years" journey. Medicines don't work or
work joined by extreme side effects. Pain which isn't supposed to be
there renders days and nights screamable. Sleep is often a prayer not a
reality. Voices that were, no longer are. Legs that once transported,
don't.
Bills pile up for some on limited or no insurance. Homes and families
are in severe jeopardy. Caretakers often have no relief. For some list
members and their caretakers medical support is often lacking-whether it
be lack of knowledge or lack of time. Questions go unanswered; symptoms
accelerate. Anxiety, fear, depression, anger and so much "aloneness" can
easily become "today's residential shadows". Another day comes to all of
us!
On the whole, I have noticed that PDers(whatever designation)are
basically highly intelligent, thought provoking, action taking, caring
individuals? They fight the PD battle by keeping everyone informed re
the latest medical reports, the latest governmental and bureaucratic
stalemates intermingled with good advice, personal cheer, and finally
plenty of good humor. What is it they say about active minds and
laughter?
So what have we got? There's bantering, some serious bickering,
sometimes a show of unintentional bad manners and suspicion. There's
chastising followed by apologizing. Hopefully there's understanding and
forgiving, too. We go on. We have gotten through another day together,
and maybe, in spite of everything, someone we don't know can find
tomorrow. I hope so because deep down I know how very much we care!
The answer we seek is within reach. We must hold each other until it
comes.
Together may we walk in the headdress of the sun.
E
At 10:05 PM 10/1/2000 -0700, you wrote:
>>>>
I want to thank everyone for their kind emails and postings.
Just to let you know in the search info below my address is tpfrph @
yahoo.com not tphrph oor tpfrpf. I appreciate the apologies from those
who sent them. I will remain on the listserv. If anyone needs my help
please email me, I am a pharmacist and my wife is a nurse. I was
diagnosed this February with a rapid progressive YOPD. I run a website
for my state's support group at http://cpwg.tripod.com. I'm also involved
with several Parkinson Groups. I've been known to be welcoming to anyone
in need and continue to remain so as until this weekend I have been
welcomed with open arms into the PD community. As you all know I'm on
disability and have a wife and a daughter age 8 and son age 3. I'm 37
years old and live in Connecticut. You can find me at several sites on
the web including several Yahoo PD sites, Mass General Forum, Dumpster
Gang, Egroups and a few more where I'm well known or the people are
familiar with me. Please feel free to email me or post on the list but I
will email you back personally unless I think everyone would benefit. "PD
is not an excuse for ignorance" Again, I'm trying to email everyone over
the next few days who supported me and everyone who offended of which the
large majority of them have apologized. The list is large and many tend
to be many people who have cited they've been ignored or treated poorly
in the past and don't post anymore. We as PD'ers have to unite if not for
a cure than for support - there are weirdo's out there but I did not
think my request odd and I have posted in the past. Treat others as you
wish to be treated - one's email name does not reflect on one's
personality nor does the initials after one's name. I went to college for
6 years and have practiced for 15 years and am proud to have the title
R.Ph. after my name. My anger comes from my basic belief that we should
treat others as we wish to be treated. I will be watching closely as to
how people are being treated on this board. We are all frustrated with
this disease but it does not give as the right to be maliciously
paranoid, mean or to post hurtful things. I am one of the lucky one's who
rarely suffer from depression - I cried today after I read all the posts.
I receive calls from recently diagnosed and newly diagnosed people every
week (as well as emails and instant messages so other people are very
aware of my presence) and the first thing I do is invite them to my house
for dinner. If we can help one person with PD we are doing good. We are
all upset about the goings on in Washington but my biggest concern is the
moment - those whoe\ need help immediately - finding ways to pay for
prescriptions, finding food money, finding a doctor, finding an answer
about their health, medication or other issue. That is the existing
reality of our disease. I go to bed every night in pain to get my 3 hours
of sleep and wake up in pain and hoping one of my 6 meds work quick
enough so that I can make my daughter's lunch, walk her to the bus, or
even pick up my 3 year old son who can't begin to comprehend why Daddy
can't pick him up at the moment or why Daddy's hands wont allow him to
play iwht Legos' Thank You Tim Foley --- Michel Margosis wrote: > I love
pudding of any proof between 11 and 120 proof > ! > Thank you > MM > >
janet paterson wrote: > > > At 08:58 2000/10/01 -0400, i wrote: > >
>further "digging for pudding proof" alternatives: > > >search * in
parkinsn where sender is > [log in to unmask] > > >search * in parkinsn
where sender is > [log in to unmask] > > >search * in parkinsn where
sender is > [log in to unmask] > > >search * in parkinsn where sender is
> [log in to unmask] > > >search * in parkinsn where sender is
> [log in to unmask] > > >search * in parkinsn where sender is >
[log in to unmask] > > >search * in parkinsn where sender is >
[log in to unmask] > > >search * in parkinsn where sender is >
[log in to unmask] > > >search * in parkinsn where sender is >
[log in to unmask] > > >search * in parkinsn where sender is >
[log in to unmask] > > >search * in parkinsn where sender is >
[log in to unmask] > > > > if one is 'feeling uneasy' about potential >
trickery > > another simple search is by entering the email > "user name"
> > (the part before the @ sign in the email address) > > (e.g. "tphrph"
or "serenityplus" or "janet313") > at: > >
href="http://www.google.com/">http://www.google.com/ > > > > the whole
wwweb is watching! > > > > janet > > > > janet paterson > > 53 now / 44
dx cd / 43 onset cd / 41 dx pd / 37 > onset pd > > TEL: 613 256 8340 URL:
> http://www.geocities.com/janet313/ > > EMAIL: [log in to unmask]
SMAIL: PO Box 171 > Almonte Ontario K0A 1A0 Canada
----------
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