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Barb, Very well put. Perhaps you should send your well thought out comments to AARP. I think that anyone who has anything to say about this should respond to AARP. They need to know that the people who know the most about this disease, the PWP's feel that they have been done a disservice by articles like these that give Parkinson's a BENIGN feature. Jennifer Smith Barb_MSN wrote: > Jay, David, et al.... > > You used the word "benign" in your powerful response to David's > comment regarding the AARP article which some List-members had > previously commented on, and upon seeing that word that ol light bulb > went off over y head - errrrrr.... in other words, it generated a > thought <smile> > > I believe most of the world has been stuck, kinda like a record (YOU > all remember what a "record" is, dontcha?) needle can get stuck > playing the same fragment of song over and over and over again till > someone goes over to the record player (THAT'S kinda like a CD... > only different... for all you REALLY young Parkies) > <wee smirk> and gives it a whack get the needle back into the groove. > > It seems to me despite all our efforts to make the world see > Parkinson's as a disease that can and DOES strike people of ALL ages > (even children, in recent years) that the non-PD-world still sees > Parkinson's as a benign disease (or a "condition", per the AARP > article) striking ONLY the elderly, and what-the-heck... old people > are SUPPOSED to have a few aches and pains and to be kinda shaky and > tremor-y aren't they? <groan> > > Suddenly, that nice, safe, AND benign picture of old people who shake > a little is being forced out of the convenient niche it's been stuck > in for endless generations and it's actually becoming VISIBLE to the > general population. > > With the advent of well known actor Michael J. Fox's public statement > saying he's had Parkinson's for 7 years and is only 37 now, the world > has been stunned by this obviously NON-benign disease which has no > cure, and appears to have LOTS more symptoms then that > not-so-devastating tremor. > > So here WE are, PWPs, our loved ones, friends, and others, trudging > along struggling to get the Udall Bill FUNDED now that it's been > passed. And we're pushing the researchers to get off their > derriere's and FINALLY tame, if not actually CURE this painful, > aggressive, degenerative and NOT-so-benign disease. And after the > flurry of publicity for Mike Fox appears to have died down, we're > still the ones in the trenches, slugging away in order to NOT present > a benign face to Parkinson's. > > Even tho it's SO alluring, even comfortable, to remain in our little > safe niche, we're refusing to remain passive, invisible and BENIGN > any longer. AARP should be made aware that virtually all who live > with PD are VERY aware it isn't a benign "condition." It's NOT a > "condition" we can be sooo comfortable with that it can even be > given a friendly, neighborly name like "Bert." > > PARKINSON'S SUCKS! > > Barb Mallut > [log in to unmask] > -----Original Message----- > From: Jay Henkelman <[log in to unmask]> > To: [log in to unmask] <[log in to unmask]> > Date: Sunday, March 07, 1999 6:11 AM > Subject: Re: bert/aarp > > >David, > > > >First of all, a warm welcome to our group! I want to briefly > address the > >AARP article to clarify (in my humble opinion) why you have been > seeing the > >various negative responses from the list. Firstly, with all due > respect for > >Mr. Mano, I don't beleive that anyone really cares as to the manner > in which > >this person chooses to deal with his disease on a personal level. > If "Bert" > >makes his "condition" warm and fuzzy for him........I say > then.......all the > >more power......! Where I would take exception (as I believe the > others do > >too) is when a publication such as Modern Maturity with it's HUGE > >circulation, prints an article that in essence.......makes light of > what is > >otherwise, a potentially devastating disease. > > > >For decades now, Parkinson's has come up on the "extreme" short end > of the > >stick in aggregate public funding for research etc. The last > several years > >have brought Parkinson's Disease to a much higher degree of public > awareness > >due to the efforts of many.......but certainly not by being "soft > and > >fuzzy". As I see things, it is simply counterproductive to publish > an > >article with such a "benign" message as to what Parkinson's Disease > >represents for the millions who suffer its realities. Obviously, > the editor > >of Modern Maturity does not suffer with this disease nor is he/she a > >caregiver for a PWP. If I should be mistaken, I hereby go on record > as > >questioning his/her sensitivity and/or emotional state! To increase > public > >research funding, there must be increased awareness of what this > disease > >represents to us.......not the "smiley faces" we pass around to each > other > >for our personal well being! > > > >The difference is what the public perception is of Parkinson's > Disease. > >Will our mandate for a cure be furthered by sprinkling "rose pedals" > on the > >path for the politicians to step on?........My dog would gladly > provide a > >few "twisties" that I would rather leave on their political path. > Yes, > >sometimes the truth stinks but it will utimately make us > free........a cure! > > > >Aloha to all, > > > >Jay Henkelman > >49/39/30 > > > > > > > >-----Original Message----- > >From: David Fein <[log in to unmask]> > >To: [log in to unmask] <[log in to unmask]> > >Date: Saturday, March 06, 1999 11:02 AM > >Subject: bert/aarp > > > > > >>im new and glad to be a part of the group.cant figure out why > everybody is > >>so"bent out of shape" about article...forgive the pun....its his > opinion > >>about how he wants to relate to his "condition". reminder..peole > have heart > >>attacks and call it a heart condition...many people refer to > themselves > >here > >>as PARKIES...not m e but its ok...talk about cute...to each their > >>own..again glad to be here. > >