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what we need to do is have adult day care for people with neuro illnesses that are progressive yet still cognitively intact. Unfortunately, it appears that as a neuro disease progresses we eventually can not be alone. However, in the interim between the stage of not working and being totally dependant we need a adult care or get more involved in volunteering for example. When u no longer can do that and daycare is more evident and the younger people begin to inquire about such programs then the facilities will provide them. Supply and demand. Maybe get the people in ur support groups who are at the different stages to approach care places, or the ones who can help the less able do so - even if it is only 1-2 hours. sincerely, nancy m Ivan M Suzman wrote: > > Nancy, you hit the nail on the head. YOU AND i AND OHERS > SHOULD FORM A NEW GROUP.Your story is > worth re-telling. > > So what do we do?...form groups > and seek congregate housing or group housing, > with other Young Onset Parkinsonians? Do we > settle for "adult day care?" Do we push to create > young-onset PD-related adult day care or exercise, > therapy, educational and entertainment grou Tell the place what u want. U are paying for it. Maybe ur suggestion they never thght of before. Keep the govt. out of it. Try to get corporate donation or involvement. > > I wonder if younger PWP's have banded together > in ANY country or state, to create small communities > which include PWP's and care providers, and > that makes sense. > I think a YOPD group in Oz. are building a PD community?? > And how do we arrange for those of us who need > more care at night , but want to avoid a nursing home, > like me, watching the calendar before I have a > neurosurgery evaluation (for me, it is on Jan 10)? > I personally hate night care. I don't feel comfortable having people sleep and me pay them to sleep. We all I am sure want to avoid nursing homes. Even docs :) They are human. my suggestion to u Ivan and I wish I would have done this myself, but I was being too anxious and spinning the what if's....Take the 'on' time and volunteer. There are people out there who will pick u up and take u back home when u are done volunteering. Try Habitat for Humanity, senior center, schools. Get counseling to help with the ?'s that u have. It helps acceptance of any illness or change- good or bad. If the change is too much talk to someone. > My caregiver tonight is out at the BARS drinking, > although he was supposed to be here 2 hours ago.... > THis behavior is certainly due to the State paying > $15.00 for the whole night . >This behavior is due to the ignorance of that HHA. fire him!! > I have had to transfer my potential day coverage, on the payment > request sheets that are co-signed, to the nighttime , > so that each night worker's check is greater. THe Alpha ONe > administrators suggested that to me. THen I do as well as I > can during the day, a strategy that is not win-win. > > I suspect that they are cutting my PCA hours to > to retaliate for my being vocal and persisitent about changing > the night rate of pay , up to a minimum of $90.00. > > My neurologist's request for night-care, which is > going in tomorrow morning, bfor night help from > a qualified CNA, HHA, or PCA, may trigger > the loss most of most of my daytime PCA hours. > > Ivan :-) > > On Wed, 3 Jan 2001 17:41:11 -0500 nancy <[log in to unmask]> writes: > > Afternoon. > > > > Waiver medicaid program in Ohio is for.... (CUT)