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Dear Ivan, Kudos and congrats! You certainly help our cause. I didn't get a chance to seet the program and I would appreciate a tape. I had to work, but I did ask my Dad to watch and he said you appeared to him to be a courageous and thoughtful young man hit by a stray bullet in lilfe. He also said something important, that sometimes I forget with all the frustrations in the daily life of a Parkie. He said he could definitely see the pride you took in representing fellow Parkinsonian's. And that it made sense to him that it made you feel like you still made a difference. I want to remind all of you, and I know most of you know and don't need to be reminded. That it is better for all of us to stay as active as we can. Fort those of us with jobs and employers who will provide the accomadation necessary to succeed at our place of employment, we should reward them by being as positive and prodcutive as we can. It doesn't hurt to feel wanted and useful. For those who are retired or to disabled to conitnue working, please if you can, try and stay active on the list or any other social contact you can forge. Reclusiveness begets depression. Been there! Done that! Please stay as active as you can. End of my sermon for today. Regards, Greg Leeman 37/6 Portland, ME [log in to unmask] -----Original Message----- From: Ivan M Suzman <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Sunday, February 01, 1998 3:22 AM 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 >