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I CAP CAUSE TOO HARD TO SHIFT. READ BELOW PLEASE Ivan M Suzman wrote: > > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) > Ivan Suzman 50/39/36 [log in to unmask] :-) > Portland, Maine land of lighthouses 37 deg. F :-) > ******************************************************************** > > Dear PIEN friends, > > DISASTER!! I am fighting a dangerous and vicious decision that > endangers my safety at home. Please help me if you can. > > The Maine Governor , Angus King, can be phoned at 207-287-3531. > I am the AUTHOR of his annual PD Awareness Proclamations. > Please make him aware that my health and safety are jeopardized . > by a decision made yesterday, and scheduled to go into effect on > November 1, 2000. > > My case is stuck in the Bureau of Elder and Adult Services, BEAS, > and serviced by a company called Alpha One, Inc. . AO is very > closely linked to the George Bush campaign ,and is very biased > towards the Republicna party. Although I manage four personal > care attendants in a rotation around the clock, and do it perfectly, > I am considered an enemy becaused I am a VOCAL patient. >I TOO AM A VOCAL PATIENT I AM TOLD. HOWEVER, I DO NOT NOR DO I WANT 24 HOUR CARE. MANY WANT ME TO HAVE IT. I LIKE SOME TIME TO MYSELF. YES I AM SCARED AT TIMES CAUSE OF NOT BEING ABLE TO GET UP TO PEE. NO I DONT WANT A NURSING HOME. NO I HATE TAKING 4 HOUR NAPS. I MISS THE SHORTER NAPS. I HAVE A BEDSIDE COMMODE RIGHT NEXXT TO MY BED. I ROLL ON THE BED THEN PUSH MY BODY UP WITH ELBOWS FIRST THEN MY FISTS. THE COMODE IS FACING MY BED OR RECLINER. THIS HELPS IF I FALL ASLEEP OR SORTOF PAST OUT WHATEVER. I USUALLY JUST NODDED OFF. SO TRY THAT. THEY HAVE A SPLASH GUARD TO FIT ON THE COMMODE.I HOPE THAT HELPS. I KNOW IT IS LESS TAXING TO HAVE SOMEONE HELP. I HATE HAVING TO RESORT TO THAT BUT I DONT WANT TO PEE IN MY BED:) > THE NURSE ASSESSORS (Betsy Balzano of Alpha One, > and Molly Baldwin of the BEAS), put me through a 5-hour and 20 > minute non-stop interrogation yesterday, and used information selectively > . > Their decision is obviously pre=-planned, and in flagrant conflict with > reality. > > THEY CUT 8 HOURS OUT OF MY DAILY CARE PLAN . Balzano and Baldwin > are tyring to eliminate 8 of my 13 hrs of home-care allowed during > each 24- hour day, leaving me wtih only 5 hours of home-care per day!! > I AM VERY THANKFUL FOR WHAT I GET.I KNOW U ARE TOO IVAN AND IT IS SCARY WHEN THE HOURS ARE CUT. BUT IT WILL BE OK. JUST GOT TO GIVE UP MORE. > . They added that home-care costs will not be covered, that for the > first time, > I will be forced to pay "co-payments". THEY HAVE WHAT THEY CALL SPEND DOWN. IT IS BASED ON UR MONTHLY MEDICAL EXPENSES AND OTHER DOLLARS. THE GOVERNMENT CAN NOT PAY FOR EVERYHTING NOR DO I WANT THEM TO. LESS CHOICE THEN IN WHAT THE PATIENT WANTS IN DECISION MAKING OF THEIR LIFE. CAN U EAT REAL FOOD OR BABY FOOD AND LIQUIDS?? There is no time allotted for > "Off-periods," > no time for stand-by assistance when the commode (toileting) > is needed, and I am being penalized for wanting to drive. DO U DRIVE AT ALL??? I CANT AT ALL NOW AND DEARLY MISS IT. BUT I REMEBER FIGHTING WITH MYSELF TO LOSS ONE MORE THING. IT IS VERY DEGRADING FOR ME BUT I UNDERSTAND IT IS FOR MINE AND OTHERS SAFETY. They > refuse to assist my independence, do NOT approve of my going to > see sick friends in the hospital, DO NOT VISIT PEOPLE IN THE HOSPITAL. YOU WILL GET VERY SICK IF U GET A VIRUS OR SOMETHING. VERY UNSAFE. CALL THEM AND SEND CARDS. refuse to allow as evidence the October > 16, 2000 > neurologist's letter, which they have ignored. They allot times for > everything > from putting on a sock to eating supper, and have NO interest in allowing > me toi eat at a normal PD pace, which of course is SLOWER. > > They want my caregivers to vacuum while I am eating, I HATE PEOPLE SITTING WITH ME WHEN I EAT BUT I UNDERSTAND IF I CHOKE THEY ARE THERE. I HAVE A BUTTON TO PRESS AND THE AMBULANCE COMES . I HATE GOING TO THE ER EVERY MONTH. YESTERDAY I CUT MY DUMB FOOT AND THEY WANT ME TO GO TO THE ER. LAST TIME I GOT INFESTION I SORTOF ENDED UP IN THE HOSPITAL ASLEEP FOR 4 DAYS AND 7 MORE DAYS FOR THINGS I DON'T REMEMBER. IT WILL BE OK IVAN. INDEPENDENCE IS HARD TO LOSE. IT DON'T MEAN A PERSON IS GIVING UP. to not sit with > me and see what help I need. They are now supposed, to run water and > do dishes while I am eating 4 feet away. YES U DON'T WANT AN UNSANITARY KITCHEN AND BATHROOM. U WILL GET SICK IF IT IS. They do not allow me more that > one change of > clothes per 24-hour period, I KNOW THIS IS DEGRADING BUT, I WORE MY COMPRESSION HOSE AND JUST A SHORT TOP SLEEVELESS AND SHORTS OR WELL A SHORT SKIRT ( IKNOW U CAN'T WEAR A SKIRT) BUT SPANDEX SHORTS WORK WELL- COTTON KIND. WHEN U GO OUT TO THE DOCS PUT A BLANKET AROUND UR LEGS OR WEAR SNOW PANTS WITH THE BIB. LEAVE OFF THE CAR HEAT IF U GET TOO HOT. WEAR A HAT AND GLOVES THOUGH NO MATTER WHAT. despite the sweating I go through..Theu > are trying to make my helpers feel like rats on a treadmill.. > > BUT DO NOT DESPAIR! I have called in to the Bureau to request an > appeal. > . > I have asked for help from the disability rights center and > Attorney Helen Bailey has responded. She will look at the > nuses; care-cutitng decision, to see if a response can beconstructyed. > > I will FIGHT FIGHT FIGHT and pray my was through this. > Molly Baldwin will lose her job--she wants me to take the 5 hours of my > day care, transfer it to night care, and then leave me with no hours > at all for day care. YES I REMEMBER HAVING TO DO THAT . BUT IT HAPPENED AND I STILL GET CALLS TO SAY HI AND SHARE STORIES OF DAILY GOINGS ON. IT IS NICE THEY CALL. She wants me to find a way to say good-bye to > Natalie, Julie, Tracy .... > THIS IS WHAT HAPPENS TO POOR PEOPLE on the PIEN list WHEN U ARE ILL THER RE NOT TOO MANY RICH PEOPLE. FALLACY THAT THERE ARE WEALTHY PEOPLE WHO ARE ILL. COSTS ARE ASTRONOMICAL. I ALWAYS SAY IT ISN'T LIKE THE PATIENT IS GOING TO LIVE FOR 30 YEARS SO DON'T WORRY. THE CAREGIVER WILL GET A CHANCE TO RECOUP THE MONEY AFTER WARDS. SOUNDS MORBID BUT TRUE USUALLY. I AM NOT PLAYING WHO IS SICKER I ONLY MEAN WELL WITH TRYING TO HELP U IVAN AS TO WHAT I DO TO GET ME AND MY CAREGIVER THRU. > who try to get home care and who refuse to leave home. > > Now maybe some of can understand why RAlph Nader > and the Green party are gaining ground. Nader and running - mate > Winona ;laDUke , if you take the time to check everything out, recognize > that peo0ple like me are silenced and disenfranchised. > > Ivan Suzman > Young Onset Parkinson's patient-advocate