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
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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
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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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