 |
 |
Jennifer.... I sent a modified (no grins or smirks) message to AARP. Barb Mallut [log in to unmask] Dear Barb: Don't trash my comments unless you have personal experience and/or knowledge relating to the products mentioned. My family has experienced unexplained relief in areas that are difficult for some non-flexible MD's to relate. One of my sons has MS, I am being treated for PD and other family members find help with a variety of routine discomforts. The products suggested can be purchased at wholesale and I offer ideas for relief based upon known testimonials. Many doctors and dentists are strongly in support of magnetics! I am not suggesting "snake oil", however, if it helped I might give it a try in some situations. Bob -----Original Message----- From: Jennifer Smith <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Sunday, March 07, 1999 1:40 PM Subject: Re: bert/aarp >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. >> > >