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Hilary, Believe me, there was no intent to offend; only to show what a minefield Q2 is. I was diagnosed at 37, and had to retire at 45. Life's been no bed of roses for me either. Bill -----Original Message----- From: Hilary Blue <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Thursday, September 23, 1999 7:41 PM Subject: Re: NOT A POLITICAL SITE >William Harshaw wrote: >> >> List Members, >> >> Remember that politics is merely the art and craft of deciding policy. I >> don't think P.I.E.N. should endorse specific candidates, but we could have a >> few litmus test questions for all candidates, for example: >> 1) What are the public policy implications of neurodegenerative diseases >> becoming the second-largest killer, surpassing cancer, by the year 2040? >> >> 2) How would you allocate funding amongst the neurodegenerative diseases? >> >> 3) What are your views on the use of human foetal cells and porcine cells >> in research and clinical trials, and ulitimately in regular surgical >> therapy? >> >> Q2 is a real minefield. For example, should you fnd research to cure MS or >> PD? >> >> MS usually strikes in the second and third decades. Finding the causes and >> developing cures would mean that those who othrwise have MS - likely about >> three quarters of a million people would have: >> i) career earnings on which they would pay income tax >> ii) lifetime contribtions to social programs >> iii) a normal family life, with children, &c > > >> >*************************************************************************** ******* >> PD, on the other hand, usually strikes in the sixth or seventh decades when >> the estimated milion and a quarter victims are: >> i) past peak earning power, hence not a growing source of tax revenue >> ii) are consmers rather than contributors to social programs >> **************************************************************************** ***** > >This is precisely the sort of attitude that angers me so much. I have nothing >against People with MS getting their fair share of govt funding etc. BUT, here >from within our own ranks from on of the most informed, active, influential >fellow pwps, we get this antediluvian definition of PWPs as being OLD and >PAST IT. >I was 24 when i started showing definable symptoms of PD. Today, I was finally >told i will be getting my first SSI check next week. And that i am now >eligible for medicaid. SInce my husband died nearly 5 years ago i have not had >any medical coverage, lived on bereavement benefits which were stopped several >months ago, had my children placed in foster care as i was deemed unfit to >care for them because of the PD, am currently being subjected to home invasion >by social workers trying to trip me up in my parenting role....... >I should love to be paying income tax, and making contributions to lifetime >social plans - and most of all, i would love to be having a normal family life. > > AND I AM NOT THE ONLY ONE > >There are YOPD groups springing up all over the USA, and more tragic stories >of the devastating effect this disease has on the lives of its younger >victims. And we need to be recognized, and we need to have our problems dealt >with, just as much as we need that cure. Because, until that cure comes, we >somehow have to survive. > >If I exist, there must be others out there just like me. > >Hilary Blue (50 / 24 / 33 ) > > >*************************************************************************** ********************* > > >> Carefully framed questions will elicit responses which will enable list >> members to mae an informed decision >> >> -----Original Message----- >> From: Bonnie Rowley <[log in to unmask]> >> To: [log in to unmask] <[log in to unmask]> >> Date: Thursday, September 23, 1999 4:10 PMor >> Subject: Re: NOT A POLITICAL SITEa >> >> >All, >> > >> >I happen to disagree w/Mary - for the same reasons that other have already >> >stated. >> > >> >But I would like to add that this topic would be welcome on SPARKLE (also) >> > >> >Bonnie >> > >> >In a message dated 9/23/99 3:05:29 PM Eastern Daylight Time, >> [log in to unmask] >> >writes: >> > >> >> >> >> This list is supposed to be about Parkinsons compare symptoms - >> >> compare meds and side effeccts >> >> what type of neuro is best? how does everyone cope etc , have a good >> >> cry and/or just get things off your chest ... >> >> There are enough other web site to get this stuff on and it >> >> should not be overloaded w/ politics !!! >> >> >> >> I left the web once because of too much >> >> "extra curricula" activities & comments that had nothing to do w/ >> >> Parkinsons. >> >> >> >> If you want to TALK & ORGANIZE POLITICAL ACTIVITIES... PLEASE >> >> JUST START A NEW WEB SITE !! >> >> THANKS >> >> >> >> MARY E SANFORD >> >> [log in to unmask] >> >> Ocean City Md 21842 >> >> >> >> >> > >