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
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>