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Ivan, Congratulations on your success! What a triumph! Thanks for what you did for all of us. You deserve to feel proud! Claudia Goldberg Ivan M Suzman wrote: > ^^^^^^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