Ivan...
First, it's SO good to see ya online after your "weather ordeal!" I've had
this mental image of a bundled-up-Parkie-on-snowshoes clumping along thru
mounds of snow, ice, and tumbled trees to get ya to the TV studio...
Your ebullience and pride in a job-well-done is catching, m'friend! I can
feel your excitement right thru the monitor! AND, I think you're a super role
model for others of your fellow PWPs.
Thanks SO much for sharing your experience with us and for being the
inspiration that you are.
Please put my name down on your list for a copy of your video. I'd be happy
to reimburse you for it (errr... provided it isn't gonna cost the same to
produce as it did the movie "Titanic!" <grinning>.
Hugs at ya....
Barb Mallut
[log in to unmask]
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From: Parkinson's Information Exchange on behalf of Ivan M Suzman
Sent: Sunday, February 01, 1998 12:06 AM
To: Multiple recipients of list PARKINSN
Subject: 30 minutes on TV/ Videotape requests
^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine land of lighthouses 28 deg. F
***********************************************************
Dear Listmembers,
I am writing to report that on Tuesday, January 20, I did appear on
WCSH-TV, Portland, Maine's NBC-affiliate, for 30 minutes of live
broadcasting!! I was one of two guests, the other being my local
neurologist, Dr. John Boothby. I succeeded in both handling questions
from the two news reporters, Diane Atwood and Jim Crocker, and in
responding to LIVE call-in questions from viewers from Kennebunkport,
Waterville, Bethel, Portland and elsewhere.
The broadcasters have asked me to reappear on April 10th, 1998, to
promote World Parkinson's Day on April 11th. Diane says that the feedback
has been "Tremendous!"
My live-in caregiver, Jay, and I went to the Greater Portland
Parkinson's Support Group this past Sunday, January 25. About thirty
people were present. They broke out into spontaneous applause when I
walked in. You all would have loved the laughter. What a moment in my
life!!
Meanwhile, Professor Kathy Beradelli, The Director of the University
of New England School of Nursing videotaped the show, loved it, and drove
in from Scarborough through a snowstorm to meet a nursing student and
caregiver for me, Michael, who then drove the videotape to me. The
quality looks excellent. I hope to find a way to duplicate the videotape
to any of you (Sonia, Helen Mason) who would like to use one.
I have been asked to TEACH advanced nursing students at U.N.E. this
spring. Kathy wants me to help the nursing students to understand the
trials and tribulations of PD.
Phone calls are still coming to me about my TV "debut." For Barb
Mallut, and all of you style-conscious "Parkies," I wore a ocean blue
mock-turtle neck and white cotton gloves for warmth, and a charcoal-grey
suitjacket for credibility, for the appearance. I had had my hair and
beard carefully trimmed at the hairdresser a few days before the show. I
had an opportunity to explain why it took me from 3:30 AM until 11:30 AM
(eight hours), to be ready to appear. I explained how our symptoms
change from hour to hour.
I had slight dyskinesia of my head and neck THROUGHOUT the show. I
think that, as Anne Rutherford suggested, this didn't matter. If
anything, it enhanced my effort, showing one of the many things we PWP's
deal with all the time. I chose to take an extra 1/2 of a
Carbidopa-Levodopa 25/100 pill, thirty minutes before airtime, to ensure
that I would not drop into an "OFF" period while on camera. The strategy
worked .
Questions came in from viewers to tiny earphones placed on the four of
us on the panel. I "jumped right in" and talked DIRECTLY to the viewers.
There was also a small microphone clipped to my suitjacket lapel, so I
was restricted by the two wires leading from these devices.
The studio lights raised the temperature to perhaps 75 degrees F. This
helped me avoid hypothermia.
I found it very DIFFICULT to use my eyes, because of the TV monitor I
had to face, which was a black screen without a picture. I did remember
to SMILE and to use FACIAL EXPRESSION for emphasis.
People are amazing--they ask you about the most interesting things.
Topics included GENES for Parkinson's, the UDALL bill,
ACUPUNCTURE-helpful or not?, convincing reluctant papa to GO TO be seen
for tremor, the various TYPES of PARKINSON's, TYPES of tremor, my own
priorities, both personally (to AVOID surgery and put a FACE on
Parkinson's, and to spend UDALL money on FINDING the CAUSE of the
cellular degeneration that results in Parkinson's). I also took ample
time to explain aspects of how I try to cope with MULTIPLE symptoms and
MEDICATIONS.
Questions ROLLED IN until 1:14 PM, even though the show was slated
only from 12:30 to 1:00
PM. Diane and Jim actually asked John and me to come back for ANOTHER
show, while we were all still on the air, and with the station's
switchboard LIT UP with questions.
So now I'm getting a chill down my spine and a smile is spreading
across my face. This was a real service to the Parkinson's community,
and I am so grateful that despite all the health hardships and winter
weather challenges, I managed to be VISIBLE in a BIG way.
Thank you all for your suggestions, especially Joan Russka, and to my
Australian friends, especially Dennis Greene and the Grahams. Knowing you
are on the opposite side of the globe
and wrote to encourage me REALLY helped give me courage.
To any listmember, please indicate if you want a VIDEOTAPE by
e-mailing me, or by phoning my house at (207)-797-8488. Let's make a
deadline for requests of February 10th.
I hope my story empowers more Parkinsonians and caregivers to make TV
and radio appearances. Just keep on trying to be VISIBLE--it makes such a
BIG difference.
With warmest regards from snow and ice-covered Maine,
Ivan Suzman 48/10
