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Hi folks, I am writing for two important reasons. Frist of all, there is absolutely NO guarantee that, even if I am filmed( postponed by bad weather to Friday morning September 11th), that the story will be broadcast. Channel 13 is up against the McGwire home run story, the Sosa home run story, the New England Patriots football fans, and all kinds of other pressures. It will be a total MIRACLE if my tiny Parkinson's community and the handful of List members have enough power to convince Channel 13 (tel. 297 797-9099) that the Iv for Pan golf story deserves air play , in preference to the GIGANTIC football and baseball lobbies. Understandably, when Sports News Director David Eid called me this morning, which in itself required two earlier calls from me, and one from my morning PCA, Keith, he voice sounded very "iffy." It is not at all certain that the PD Udall Act and all the related issues will get air play either. Who knows how David Eid will edit and write his story about me? After all, is Channel 13 being overwhelmed with PD-related calls? I rather doubt if its health reporter, Kim Block, has even heard at all about the Ivan golf story. The TV filming is TENTATIVELY rescheduled for Friday, September 11, in the late morning, Eastern Daylight TIme. Mr. Eid, whose father has PD in Worcester, Mass, did NOT know of ANYONE from the LIst having actually called either their local stations, or his office. Hopefully, your calls will be known to him by Friday morning. The second reason I am writing is to respond to Craig Mellinger's concern, that perhaps I am too young and too physically well to be representative. I fully share his concerns. In a nutshell, I figure, ANYONE with PD who is not hiding it, who goes on TV, gives us another small victory. We MUST learn the art of media coverage if we are ever to be heard, however our community gains entry to the arena of TV, radio, movies, magazines and newspapers. Craig raises a point I always keep in mind--Craig, the community of Portland, Maine is small enough (60,000) so that my name is known, and the fact that I am homebound without personal care attendant assistance up to 13 hours/day is also a well-known fact. I am VISIBLY affected by Young-Onset Parkinson's. I struggled terribly to play the two 9-hole rounds of golf that were required. Noone else from Maine was able to participate in the Parkinson's tournament. I needed a nurse-practitioner with me for the first 9 holes. It took me 4 1/2 hours to complete. He drove an electric golf cart to get me around. My meds wore off in the blistering, steamy heat, on the 3rd hole, by the humid banks of the Presumpscot river. The mosquitoes buzzed me constantly while I waited 40 nerve-wracking minutes, waiting to hit my second shot from the right side of the fairway. We waived two groups through. I had to avoid eating, despite the need for energy, because of the possibility of protein blockage of my medicines. OR just plain food blockage. He backed my car into another in the parking lot, while I slumped motionless in the passenger seat. I got home so messed up that it took me all night and the next day just to recover. The second 9-hole round, played the following week, had me accompanied by a nervous personal care attendant. It was an equally brutal, late June ordeal, in humidity and sweltering heat. .I had to drive myself, just to us get there and back, because that attendant has an OUI (alcohol) problem, and no driver's license. I had wearing-off problems and tremors on the 2nd, the 7th and the 8th holes, and was sweating continuously for the last hour. It took almost 4 hours to complete 9 holes. I was so exhausted that I had to be helped to bed an hour after the round ended--at 1 in the afternoon. I was a basket case until late into the night. Given these details, I think that Dave Eid will show me as a battler against inevitably increasing odds. I am certainly aware of your concerns-in fact, I share them, and I understand them. My philosophy is to keep doing as much as I possibly can, and meanwhile, be open about having Parkinson's DIsease. This educates the public. Why hide? And meanwhile, why not have a little fun if you can, while promoting the cause-finding a cure for Parkinson's Disease, and making our lives a little less miserable along the way. Ivan :-) 48/12 ^^^^^^WARM GREETINGS FROM^^^^^^^^^^^^^^^^^ Ivan Suzman 48/12 [log in to unmask] Portland, Maine Land of lighthouses deg. F ******************************************************************** On Tue, 8 Sep 1998 11:15:10 -0400 Craig Mellinger <[log in to unmask]> writes: >Ivan We are trying to educate the general public as >to >how terrible >an affliction it is. I wonder if showing people how good a golfer you >are will end up >doing a disservice to some of us who would consider just to get up >from >chair and take a small walk without fear of falling down a major >effort.