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Barb M. and list- The late 60's were indeed the years when we American boys who refused to go to VietNam and be cannon fodder became activists. Unfortunately, my activist skills do not remove the agony of a PD-ridden future. Dealing with PD since age 36, I really just want to hide sometimes. I feel like if I just could go to sleep and if PD would just - magically DISAPPEAR - I mean, DAMN PD- I hate it so bad I'm ready to SCREAM! I just wish the people on the List who are NOT 60's-people would JOIN in the screaming-it is a COMBINATION of anger and persuasiveness that gets things moving and changing, isn't it? Or, to put it bluntly-the PD community is STILL too quiet to be powerful. And we REALLY must direct our energies into VISIBLE public actions. I'm in my 12th year of PD, and believe me, it is NOT fun at all. Ivan ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/11 [log in to unmask] Portland, Maine land of lighthouses 61 deg. F *********************************************************** On Thu, 9 Jul 1998 05:38:57 UT Barbara Mallut <[log in to unmask]> writes: >Good points, all, Ivan. > >I believe that within the great mass of people that make up the "Baby >Boomer" >generation, there's going to be a younger, more vital group of >individuals who >will be struck by Parkinson's then there was in the past. > >Heretofore, PD has always been referred to as an "old person's >disease," and >indeed, it seems the general public AND the medical community tends to > still >believes that only older folks have Parkinson's. > >THEY are in for a SURPRISE!! As more and more Boomers become a part >of the >Parkinson's community we're going to hear a LOT of noise from them >clamoring >for a cure. > >THIS is the generations that honed their skills as activists in the >turbulent >60s 70s (and Ivan was right there in the middle I betcha) <smile>. I >think >we'll be seeing AND hearing from them as they become active, vocal >advocates >for a Parkinson's cure. > >Parkinson's advocacy.... a cohesive Parkinson's grassroots VOICE... . >really >only started within the past few years. And look at it NOW! It's >snowballing > tremendously because of US... the Parkinson's COMMUNITY. > >Can't you just FEEL the potential... the POWER of such a group? ><getting goose >bumps> All we really need to do is to get ANGRY enough to ACT and >then we're AWESOME (tipping virtual hat to our wonderful advocates who >have >tackled Washington!) > >Barb Mallut >[log in to unmask] >---------- >From: Parkinson's Information Exchange on behalf of Ivan M Suzman >Sent: Wednesday, July 08, 1998 9:15 PM >To: Multiple recipients of list PARKINSN >Subject: Re: WHAT! PD is a third-class disease > >I feel so frustrated and so exhausted, but, I try to look at the >bright >side, even though I share Jerry's anger over our meager funding. > >The bright side is that we are:- > >1. appearing on TV, radio and in newspapers in increasing numbers > >2. the Udall Act is authorized for 3 years > >3. we are closer than ever to getting $100 million/year in research >and >public education funds through the udall appropriations process > >4 we are greatly increasing our advocacy tools and skills > >5 we are becomimg a community, and are no longer isolated from > one another ! > >Thank you Jerry for your positive energy and even for your anger. > >Ivan >^^^^^^WARM GREETINGS FROM^^^^^^^^^^ >Ivan Suzman 48/11 [log in to unmask] >Portland, Maine land of lighthouses 57 deg. F >*********************************************************** > >On Wed, 8 Jul 1998 21:42:07 -0500 Jerry Finch <[log in to unmask]> >writes: >>"That means the agency spent about $1,162 in research monies >>for every heart disease death, versus $33,513 for every AIDS >>death." >> >>Hold on a cotton-pickin' minute here. My understanding is >>that PD gets 28 bucks a year, right? What's up with this? PD >>is a third-class disease? > >> >