Ivan said, amongst other things <smile>: I have just been ACCEPTED to complete my Ph.D> in Anatomical Sciences, describing and interpreting fossil hominid bones from East and South Africa, by the Faculty of Science of the University of the Witwatersrand, Johannesburg, South Africa, by correspondence. YOU GO, GUY!!!! I'm sooooo proud of you for persevering!! You're a bright lite of inspiration for us ALL.... Much love to you, m'dear... Your Cyber-sis... Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of Ivan M Suzman Sent: Saturday, September 26, 1998 2:56 PM To: Multiple recipients of list PARKINSN Subject: Re: Looking for Ivan/ Reply from a "P.P.A." Friends, ^^^^^^WARM GREETINGS FROM^^^^^^^^^^^^^^^^^ Ivan Suzman 48/12 [log in to unmask] Portland, Maine Land of lighthouses 61 deg. F ******************************************************************** Dear friends, It is so great to be the subject of so much concern. Thank you so much. It is true that I am feeling exhausted and have had to reduce my activities. My caregiver situation remains very difficult at best. I am still living alone, and after 4 months, I am wearing thinner. Oncoming colder weather requires me to run woodstoves to offset the Parkinson's-like cold that settles into me otherwise.I am keeping my eyes and ears open like antennae, and several signs have been posted for me around the area colleges, nursing schools and hospitals, and churches, health food stores, and elsewhere. No live-in caregiver has been attracted so far. The good news is that although I never made it to visit listmember Hilary Blue in September (janet paterson mentions this trip), Hilary will visit me in early October. Some of you know 49-year old Lynn Phillips of Rolling Forks, Mississippi. He is hospitalized at the Baptist Hospital in Jackson, and I have been trying to help him and his mom, who is his caregiver. Lynn was at the Parkinson's Action Network forum in Washington, DC in June. One of my personal goals remains seeing thatthe Udall Act get funded. I was promised by Beth Beausang, the health aide to US Rep. Tom Allen of Maine, that Tom is willing to speak to the need to fund it fully, on the floor of the House of Representatives. Today, Senator Olympia Snowe's "point man," a local former State Senator, talked with me about the $100,000,000.00 we need, and promised to urge her to push for full funding. One of my greatest concerns is finding a live-in caregiver who might become a long-term caring companion. I am spending too much time at home alone, and this is extremely tiring. Housework and so forth seems to be under control, but my house is too echo-y and Camilla is right, I am not a loner-type of person. One of the coping mechanisms that works to dispel too much isolationg is to call friends and to visit neighbors. Another is to be completely humble and very grateful for my beautiful, handicapped-adapted house and fabulous back yard, bordered by forest birds singing joyfully every morning. My upcoming hospitalizaiton for a hernia repair, whether it is by laparoscope or external approach surgery, is only tentatively scheduled for October 14, at Mercy Hospital in Portland Maine. No definite decision has been reached. I did get to my local neurologist on Friday morning (yesterday) , Dr. John Boothby. He is an excellent listener, and he has ordered that my medicines are to be patient-controlled by me and by a friend who has cared for me every early Saturday and early Sunday morning for fifteen months, a nurse-practitioner student and artist who has agreed to be my advocate while hospitalized, Michael Weiss. One of the most frustrating events has been understanding how voiceless we as a community still seem to be , when it comes to media exposure. I am still perplexed by our lack of support from Hollywood stars. I am very sorry to read Jim Finn's news that his Australian TV appearance is, like mine on CBS-affiliate WMGE, here in Portland, not yet scheduled. I think it has something to do with the expectations American, and perhaps, world society has for the elderly. It is a monumental achievement to be as far along as we are as a cybercommunity, and I enjoy and appreciate our List even if I am tired now, and lurking more than interacting. But I am both puzzled and pained by our limited visibility on TV. My Channel 13 TV appearance about my golf achievement in June, remains unscheduled. Jeannette Fuhr of MIssouri, Hilary Blue, my Aunt in Providence, Rhode Island and perhaps one or two others have made contact with the WGME sports director, David Eid, but the timing is not right yet. Dozens of calls probably reach Mr. Eid daily about the home run story of Sosa and McGwire, understandably. I went through a HUGE amount of energy to be filmed putting golf balls, with my "No PARKINSON'S" pin displayed on the brim of my golf cap. I was asked what Parkinson's Disease is, and how it affects me, and of course, about my hopes for the future. Unfortunately,. Mr. Eid may not have the power to get the segment aired for a while. What more can we do?? A friend of mine is a T-shirt artist, and has worked with me to design "OUR TIME IS RUNNING OUT" T-shirts, with an hourglass logo. We hope to have the first test-run of 24 T-shirts TODAY--just in time for my support group tomorrow. Let's hope this effort succeeds. Tomorrow is the PD Unity Walk in New York City. Good luck, everyone!! I hope you get media coverage! I am mostly functioning but understandably anxious about living alone at the moment. I found an older woman to come in late at night, and check that I am OK for about 15 minutes, at 8:45, and 12 midnight. She also sleeps here and checks me at 3:30 AM. So I am grateful for her help, even though we are strangers to each other and she cannot stay here during the cold weather that starts around October 10, and lasts for about six months. I guess that ought to answer questions. I wish I could tell you more, but at least I am not lost in space. I had a very special event happen today. One of my new caregivers, Natalie, drove me to the beach today. As we sat on a large towel, dressed in light jackets and shirts and full-length blue jeans and sneakers, I marveled at the fog over the light peach-colored sand, and all of a sudden, along came a friend whom I had not seen in four or five years, her children now 11 and 6, and two of their friends. She had never seen me with a caregiver, and asked what I am doing for work these days, I started to think of a reply. Before I could voice a response, Natalie quickly chimed in, laughing, "Ivan, why he is a Parkinson's Patients' Advocate!" Dana and Natalie and I all laughed when Dana, curly red hair blowing in the ocean breeze, said, "Yes, Ivan Suzman, P.P.A." Then, as all four kids looked on curiously, Dana added, "It's so good to see you looking so well" I try to choose to be positive, like Dennis Greene just posted, even though I may be under the weather and experiencing pains and aches. Attitude is everything, so when I am silent on the List, I am probably resting from the PD battle, and re-gathering my energy. Camilla, Janet, Hilary, Jeannette, Maryhelen, and many, many more--thank you for your support. Please do keep in touch; you all help me battle along. Oh, and by the way, Martha, Arlene and others, I have just been ACCEPTED to complete my Ph.D> in Anatomical Sciences, describing and interpreting fossil hominid bones from East and South Africa, by the Faculty of Science of the University of the Witwatersrand, Johannesburg, South Africa, by correspondence. Another big goal, to keep me reaching for the best achievements possible. Ivan Suzman 48/12 Portland, Maine On Sat, 26 Sep 1998 08:54:30 -0400 Camilla Flintermann <[log in to unmask]> writes: >Friends-- has anyone heard from Ivan in the past few days? I and >others >have written to him but had no replies--unusual. If anyone lives near >him, >or has been in touch, please respond. I know he was having trouble >finding >CGs, and am concerned. > > > Camilla Flintermann, CG for Peter 80/9 > Oxford,OH > <[log in to unmask]> > http://www.newcountry.nu/pd/members/camilla/one.htm > > ** ** ** ** ** ** ** ** ** ** > > ** Ask me about the CARE list for ** > > ** Parkinson's caregivers ! ** > > ** ** ** ** ** ** ** ** ** ** >