IVAN--HOORAY FOR YOU! COULDN'T BE PROUDER.....and it seems not to be a one
time thing, but an open door to continuing education/awareness re: PD. The
chance to teach nurses is really important! Thanks, for all of us, for the
time, effort and planning it took to bring this off so successfully.
>^^^^^^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
Camilla [log in to unmask]
Oxford,Ohio
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*"In all beginnings, endings lie enfolded,*
* implicit and invisible as roots."...CHF *
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