^^^^^^WARM GREETINGS FROM^^^^^^^^^^^^^^^^^
Ivan Suzman 48/12 [log in to unmask]
Portland, Maine Land of lighthouses 56 deg. F
********************************************************************
On Tue, 29 Sep 1998 15:53:16 EDT "Edie Luther." <[log in to unmask]> writes:
>Thanks for your kudos, Ivan. The interview went great. The main
>subject was
>the young onset pwp's. There were four young pwp's interviewed about
>how
>parkinson's affects their day-to-day activities. Then my doctor was
>interviewed.
>
>The whole interview was very successful. It was interesting to see
>how the
>final package was for the airing. We ended with lunch served by me, as
> the
>filming was done at my home.
>
>
>I have been trying to get something out about the yop's, and I finally
>did it.
>That
>is my contribution, however small. People just do not know that pd
>affects
>not only the elderly. Many are quite surprised when I tell them. I
>also tell
>them
>that I am also a yop but I aged.I
>
>There was also a plug for our walk-a-thon which is on Saturday,
>October 3rd.
>
>I really don't see what your golf segment would accomplish, as this
>interview
>covered the young parkinson.
>
>Edie
>
Hi Edie,
You seem to raise two issues in your post to the LIst about your TV
appearance in Baltimore.
Let me talk briefly about televising Young Onset Parkinson's first,
and the golf issue afterwards.
Again, what a high point for all of us to know that you were so
successful! I'm sure there are many, many of us who are really PROUD of
you, Edie. SO again, congratulations.
I feel the same way about young-onset parkinson's--our story NEEDS to
be told. The whole image of PD, as a disease of the sedentary, very much
older person, is so distorted from the reality. If the range of
variation goes from teenagers on up to extremely old people, a lot of
education needs to be done.
People in general just don't have the information or the personal
experience to UNDERSTAND Parkinson's, and its many variations.
The significance of being filmed at a golf course, on location, is that
it depicts the ACTIVE mode, it shows me outdoors, putting golf balls. Of
course, my wrists and hands are looser on the hand grip, I am wearing
high-top sneakers with deeply-indented rubber soles for traction and
support, and my gait across the golf green is slow and cautious.
Plus, I was shown sandwiched between the McGwire and Sosa story and
the commercial break, with the headline of "GOLFING ACHIEVEMENT!" This
was great, because I was depicted as a local amateur sports hero, who had
braved the adversity of 12 years of PD (I wore a "No Parkinson's" pin on
my cap, so there was absolutely no doubt that my visible disability is
indeed Parkinson's).
I feel that the sports fans who are so tuned to injuries and the
competitive spirit enjoyed seeing the segment, learned something about a
subject that NEVER usually penetrates the macho world of professional
sports. The sports commentator even closed the taped segment -only about
45 seconds long, with a very personal "Congratulations, Ivan" to the
60,000 viewers at 6pm and to the 20,000 late-night, 11 pm viewers.
She talked about PD and other diseases, at the end of the later
newscast, at 11:29, with Kim Block, the News Anchorwoman. Kim said I was
an inspiration, and now people have telling me on the phone today that
they want to know how they can help us PD'ers.
So I used the golf tournament as a way to open the door a little wider
for all of us.
Ivan 48/12
