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TV INTERVIEW NOTES for all on the PIEN List: PWP and CG's swaying to LOUD GOSPEL MUSIC ....... Thanks to someone very special up there, I made it through the interview. The gospel tape from the Turtle Creek Chorale and the Hamilton Park Baptist Church , of Dallas, Texas is CRANKED to VERY,VERY loud, and , here are my thoughts for you all: The interview was great- I went into the yard, showed my grapes and then, up the double-railed stairs, into the house, showed the wheelchair-accessible bathroom, showed the PIEN, with Edie Luther's message ON the screen, showed pictures of Maryhelen and Manuel Davila, Camilla, the Lima Ohio support group of Don and Vivian McKinley, a letter from the Muhammad Ali office to me. Talked for 90 minutes!! Jennifer asked many, many questions. She covered the Udall funding fight, the lack of movement disorder clinics in Maine, NH, Vermont, and nearby Canada. We talked about access to specialists, the issues ofquality of life for families facing PD, the reasons why I believe I will need surgery, the lack of money for caregivers that prevents me from having a stable home life, especially, the low wage and partial funding for enough coverage to feel completely safe to risk surgery. I went OFF on-camera!! Tremors, had to take pills on camera, even had to drink OJ with a bent straw-hands became too weak to hold a cup with a large handle. I feel tired but exhilarated. A once-in-alifetime dream. Let's hope others get such opportunities to go PUBLIC. I am smiling!! Got to rest before dinner. Hoping anyone out there who can videotape WPXT-TV,Channel 51 on UHF, or 12 Cable, will do so. Jennifer's cameraman, John were sporting big smiles at the end- she ate one of my fresh-picked GARDEN strawberries that I picked this morning, on camera , and received a THANK YOU card from me, thanking her for providing the honor to me to VISIBLY represent PWP's, to close the interview. However she mixes and edits the interview tape- it is a winner. Maybe I'll be able to get copies! Ivan WHEW!!! :-) :-) On Tue, 29 Jun 1999 15:16:11 -0400 Camilla Flintermann <[log in to unmask]> writes: >Ivan I just got back from bringing Peter home from hospital--I can >only >stress what I expect you will say--that PD is different for each PWP, >that >$$$$for research are needed, that not all PWPs are senior citizens, >and >that it affects the whole person, head-to-toe, far beyond any visible >effects such as tremor or masked face. I would also make the point >that it >affects the whole family and comminuty as a result---good luck--sorry >no >more time. > >Camilla Flintermann, CG for Peter 81/70/55 >Oxford, Ohio >http://www.newcountry.nu/pd/members/camilla/one.htm ><[log in to unmask]> > > "Ask me about the CARE list for > Caregivers of Parkinsonians ! " ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 74 thunderstorms deg. F :-) ********************************************************************