Barb, it is all of you I thank for all I've learned.
TY E of the headdress


At 01:14 AM 10/4/2000 -0700, you wrote:
>Ohhhhh Edith! (wiping tear-filled eyes)   You said it ALL.  And
>you said it so exquisitely and with such passion.
>
>Thank you, thank you, thank you!.  Thanks for your eloquence and
>for being YOU.
>
>Barb Mallut
>[log in to unmask]
>-----Original Message-----
>From: Edith S. Love <[log in to unmask]>
>To: [log in to unmask] <[log in to unmask]>
>Date: Tuesday, October 03, 2000 4:24 PM
>Subject: THE LIST
>
>
>>>>>>
>>
>>    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 t
>hose 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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