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Well here goes folks, grab a hold and hang in there. There is ONE giant ray of hope, regarding my former live-in CG, Jay Forys, who moved to New Jersey in October. Since then it's been a hotel of temporary CG's here in Maine. Call me the innkeeper? Jay, who the PAN Forum people met in June, is a rare human being. He helped me so much. We are both in a picture working for the Udall bill, in the latest PAN Reporter issue (November,1998, p.2) He phoned twice-once Saturday for an hour, once Mon night. He now-wants to try again. I called Maryhelen last night for advice. She really knows the ropes of YOUNG pd. She said this really is good news. There's so MUCH for him to consider, HOWEVER... . He's got a BACK-BREAKING, BUT GOOD job, working in a warehouse picking orders 10 hrs day..If he came here, Maine's CG money HAS to be ADDED to by other resources. If he works at Maine's$6.25/hour for some of my weekend and back-up coverage, and at only $9/night for the ENTIRE night, for some or most of my nights, he still has to find a second job days. I don't know what to say to him about money. Too much pressure on him at low pay could kill the deal-it wore him out by last June. Also, he would have to give up a large and VERY supportive family in New Jersey. Nicky, his 10-yr old son, now with his sister and mom in New Hampshire, may come to us. Last night I phoned N.H. and Nicky answered, "IVAN!" when he answered the phone. He wants to see his dad, and me. He calls me 'big buddy." His dad is trying to get up here this weekend. Jay does not have a car. I do-so he used mine before... It's a snow-safe 4-wheel drive '88 Chevrolet Blazer. Jenny, Nicky's 15-yr. old sister, will stay in New Hampshire with their mom- who is a CNA. Jay sends money to her, a responsible Dad. Their recent divorce was in April. So this decision to come to Maine hinges on enough money for JAY,and involves decisions about friends, and families in Maine, New Jersey and New Hampshire. My family is in Rhode Island, not getting the real PD picture-avoiding it--and pretty much avoiding me. So don't count on them. Jay Forys is using his dad's address for now, if anyone wishes to write him: c/o Thaddeus Forys (his dad) 63 Washington Place E Rutherford New Jersey 07073 You know me---I can be also phoned at 207-797-8488 or write c/o 9 Range St Portland Maine 04103 NOW, sorry to burst the bubble a bit. I am battling SOMETHING NEW:at end-of-dose, RAPID loss of body heat. I suddenly run out of steam, and then I am so cold.This happened IN A HOT BATH on Monday. I had to get out of the water COLD- this is not right. Meanwhile, Xmas and New Year's are coming-and all of a sudden I am fighting a nightmare trying to find and schedule underpaid caregivers from 21st to Jan 8. Students on vacation, CG's going to see families, travelling on Xmas day and 26th- (only 2 of 9 CG's available). Friends around may help a bit, but my family nowhere to be found. SO I am turning to list-family.. Called Boston University Neurology 3 times since Friday. Finally got nurse on phone yesterday (Tuesday). Now it's Wednesday. I STILL haven't talked to Dr. Elias there. Too many patients, so little time! : --1 (a grim smile). She says I can only describe "one symptom" on the phone, but NO appointments until February. I guess a lot of folks much worse off than me. They are SWAMPED. Last time I went there was a line down the hall- ALL waiting just to get to the waiting room- Pwp's, cg's all colors, many languages, all age groups. I saw my local neuro last Friday (Dr. Boothby)- he said he'd call Boston about the end-of-dose body heat problem. But as of yesterday at 4PM he had NOT done this. He's now "gone til Thursday" I wouldn't ask docs for help if I had the answer! Don't know if body heat loss is due to PD getting worse or to some other internal problem with my "thermostat." I never heard of brain surgery for a broken thermostat. Does anyone know if this is detectable by tests? Thyroid? Now it's snowy what next? Drove all over yesterday before the snowstorm hit around 1PM. Hope it melts. Used to love snow-now it feels like a trap. IVAN ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses deg. F :-) ******************************************************************** On Wed, 9 Dec 1998 00:04:18 -0500 Hilary Blue <[log in to unmask]> writes: >It is crucial that Ivan's story be told. Not just for Ivan, but for >all those >out there in his same situation. I'm doing what I can, but I need >help.I have >made contacts with the following places, but I need help following up >etc. >Jim Lehrer (formerly Mcneil Lehrer) hour >Washington Post, Medical Section >Boston Herald >Bob Madigan - radio show called ' Issues" >Date line >Also, two home care agencies that might be prepared to sponsor a >caregiver for >eg Ivan. >SO, > HELP > ME.... > PLEE..EE..EEZE!!!!!!!!! > >Hilary Blue(49/24/33) >