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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 >> >> >> >> ---------- >> Do You Yahoo!? >> <http://photos.yahoo.com/>Yahoo! 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