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Barb Even me in Northwestern Ontario, Canada was looking forward to watching EXTRA if not for any other reason than to see your face - you are after all a major contributor to our disease with info, computer expert, etc. So they want a celebrity - why not Dr. Icano? Just trying. Just hoping. Just wishing you a good day anyway. Fleurette At 05:38 PM 4/24/98 -0400, you wrote: >DEAR COLLEAGUES, > Early this am I wrote Barbara a note expressing my wish to speak >with the producer of EXTRA. My note and Barbara's response follow. If you >have any thoughts about what to do please drop me a note > thanks > george >@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@ > >Dear Barbara, > How strange it is for me to call you dear and mean it !! But the >producer of "your segment" on "EXTRA" has gone and ticked me off. To not >run the show because of a lack of a "celebrity" is insulting to you and >your colleagues and to me and every other PWP. My first thought was to >ignore the whole thing given that the program was trash [in my opinion ]. >But on second thought >I think it is better to try and educate the producer and his staff both >about PD and about finding an angle to make the segment work. For example, >on the negative side , Dr. Iacono is not without his detracters. For the >positive, there is you "representing" the List which is made up of 1600 >talented and good people. > >Soooo, Barbara, if you could get me the producer's name and address and >about 6 others on his staff including his boss, the executive producer. >Also since you apparently watch the show you might get to me a short list >of sponsors as well. > >I've sent this note to you off-list in case you don't approve of it. I >don't want to damage in any way what ever chance you have of getting on the >show. If you don't have a problem I'd like to > go on-list and encourage other to say a word or two. > > My best > george >&&&&&&&&&&&&&&&&&&&&&&&& > > >Hiya George.... > >In no particular order, 'cause I'm outta sinc right now awaiting my >first-meds-of-the-day to kick in, > >1. I don't recall the producers name as he rushed in late for the shoot, >said "Hello, I'm Mumble-mumble," and we all jumped right into doing the >preparing for the shoot) > >The shoot was arranged by Encino Hospital's public relations firm, rather than >the hospital itself. I wasn't aware of that till I called my liaison at the >hospital in order to get the information ya asked for about the staff of EXTRA >who did the shoot. I was ...uhhhhh... STRONGLY *encouraged* to NOT get >involved in "hospital politics" by contacting their public relations firm to >track down that info. > >Not being totally dumb, I got the message and backed off. > >2. You're right 'bout Dr. Iacono not being without his detractors, but >MOSTLY I'd say that hostility arises from within the medical community itself, >tho I have met a few Parkies that can't stand his being a bit of a "medical >renegade" and/or his occasionally brash personality. > >I've yet to hear a physician bad-mouth Dr, Iacono's ABILITY as a neurosurgeon >and movement disorder specialist, however they DO go nutz when Dr. I is >mentioned in conjunction with pallidotomies (and Dr. I HAS performed over 1000 >of 'em, with 400 being bilateral). When the FDA had yet to approve >pallidotomies for general use, Dr. Iacono picked up and went to CHINA with a >patient desiring to have the surgery (and this man was in TERRIBLE condition >due to PD!) <WE know what it's like to hit the wall with this damn disease, >don't we, m'friend>. Despite the rather Spartan hospital facilities, that >surgery was a tremendous success as were so many others Dr. Iacono's done both >in and out of the USA. > >I believe it's his "in your face" attitude plus his doing heavy duty research >into both conventional AND alternative medicine that simply seems to drive >some doctors crazy when ya mention Dr. Iacono's name to them, > >3. I happen to agree with you that EXTRA and it's ilk are total trash, so I >don't regularly watch it. I did turn it on faithfully for about 3 weeks after >the shoot because they kept telling the hospital's ad agency that the PD >segment'd be televised aaaaany day now. Finally, I said to hell with it and >stopped watching the program. Now if the segment's aired, I'll prolly miss >seeing it! > >4. Did EXTRA "insult" the 3 PWPs who were in the shoot plus the rest of the >Parkinson's community by not airing the segment because they felt having a >celebrity in part of the segment would enhance the program? > >I say "no" to that, George. I say no because I don't believe that the shoot >was made by EXTRA to enlighten the general populous about PD. It was made to >help the TV station maintain it's ratings and insure them of enough >advertising and public interest to stay on the air another season. They >wanted "fluff-medicine" <light and positive>, and we gave 'em that because the >alternative was them saying NOTHING about PD on their program. And we felt >that ANY info getting out to the public about PD is better than getting NO >info being disseminated. > >Sooooo.... basically, George, it all boils down to TV ratings and money, not >PD, when it comes to what gets aired. Fair? Not fair? Immaterial in THIS >industry. DON'T TAKE IT PERSONALLY, 'cause there's nothing more impersonal >than a program like EXTRA. > >For PERSONAL in the TV industry, I believe ya can't beat Oprah, and I have >submitted several requests to Oprah giving a highly personal spin to PD by >suggesting that our List family makes for a wonderful human interest story, >what with 1600 folks originally having only one thing in common, and that a >terrible disease. I pointed out that despite the fact we physically live in >over 35 different countries, ONLINE we "live" very close to each other and are >caring and supportive friends. Some of us could actually appear on Oprah's >show and many others could be live-on-video. THEN we could build on what PD >has done to our respective and collective lives, the lack of funding for the >Udall Bill, etc. > >Finally, if you want to post your message to me and my response to you, feel >free. > >Hoping you're doing well.... > >Hugs... > >Barb Mallut >[log in to unmask] >