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