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> Dear PIEN and Caregivers List members: > Dear Ivan, > > It is now almost 08:00 AM on Sunday, February 4, 2001. > I have been trying to type this message , in intervals, for nearly > 3 hours. > It is now almost 9.00 PM on Sunday, February 4, 2001. I am continuesly typing now for nearly 10 minutes. I have no idea how long I need to type this letter, but I will write it at the end of this letter. > Friday night, I had to taxi downtown to Mercy Hospital, and > abandon my PD-adapted home. I had failed to find overnight > PCA (personal care attendant) help, and I was feeling > nearly exhausted. Why an expensive taxi, no bus or friend that could bring you to the hospital. How did you get to the cab? Wheeling or Walking ? Why don't you stay in bed, or if you can't sleep, stay up and read a book or watch television? > My usual daily PCA care hours , paid to the PCA's by > the Maine Medicaid Waiver for the Physically Disabled > (Consumer- Directed), have been assessed for the only time in 6 years to > be drastically cut, from 13 hours per day, which I have had since 1998, > to 5 hours per day. This is the simultaneous assessment of my needs > by the Maine Bureau of Elder and Adult Services (BEAS) and by the > Provider Agency, Alpha One, Incorporated. > > This happened October 23, at my home. It was very, very strange. > Instead of SNIP SNIP SNIP So, what you are asking from me, is that I write a letter to support your search for PCA's that you need to pee standing? Wake up Ivan, we are in 2001 !! You have to make choices, just like anybody else. You have to make something of live.....and you have to do that yourself. If you can't pee standing....sit down and pee, is more hygienic also. Use your "ON" hours for things you cannot do, when you are off. There are many more ways to cope with this dreadful disease. Just ask the list:) Kees Paap P.S. please read my poem "Ignore"