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Barbara, This is wonderful news.I did not know that anybody was thinking along those lines, and I'm very relieved that not only are you thinking, but actually doing. It makes it that much easier for me to get my point across to people here. We are just at the stage where a daycare center is being planned - and that is going to be in the Maryland suburbs, which is not really convenient for NVa - and anyway that is not the same thing at all. We are talking about a place where people can live together and share the amenities - which will be suited to their needs. Even a daycare center is directed towards the older segment of the population - PD or otherwise Please keep me updated. Hilary Blue -------------------------------------------------------------------------------------------------------------- Barbara Mallut wrote: > > Hilary, Bernie, et al... > > Like you, I don't feel I'm ready for a retirement community > or an assisted living facility - YET. > > With that in mind, and previously unaware of the facility > Bernie wrote about, I'd very recently begun seriously > looking into the feasibility of having a similar type PD facility > built here in the L.A. area. > > Tho this is still in the research stage, Bernie has certainly > made it easier for me, 'cause I suspect the Sun City facility > might be a fine model of what I'd like to see here in L.A. > > There are several other Parkies plus an individual who owns > a professional retirement home, board & care, nursing home > referral service (who lost his father to PD, hence his interest > in this project, and the impetus in starting his referral service) > involved in this embryonic research project. > > All of us in the project are "young Parkies," having got our > initial symptoms in our 30's and 40's, THIS is the group we're > aiming for in OUR projected residential facility. We've ALSO > got to consider that while we STARTED as YOUNG Parkies, > we ARE gonna eventually end up as OLDER Parkies, so we > recognized the need to plan for that eventuality in the > projected L.A. facility. > > I'd like to see those of us in the "L.A. Project" (we don't even > have an "official name" yet) go to Arizona (which, thank > goodness, is a mere hop 'n jump away from L.A.) in the near > future and check out > the Arizona PD facility. This should be a major step forward for > us since we all feel the burden of the weight of that "Parkinson's > hourglass" with it's "TIME IS RUNNING OUT" motto hanging > over our heads. > > As this project takes on a more solid shape, I'll update ya all > here on the List, as I'm very aware that we're all in the same > small boat, paddling against the rough and windswept seas... > > Barb Mallut > [log in to unmask] > > --- > From: Parkinson's Information Exchange on behalf of Jed Blue > Sent: Friday, September 11, 1998 1:54 PM > To: Multiple recipients of list PARKINSN > Subject: Re: Assisted Living Residence for People With Parkinson's > > Dear Bernard, > This place seems quite terrific - if you're old. And that is not what > I am looking for because I am not old. i am not that young either. I am > firmly ensconsed in that in between region that used to be called middle > aged. I dont want discos, and strange movies , but I'm not quite ready > for reruns of Johnny Carson. Maybe I'll want to go on working ( i teach > piano) and supermarket shopping, and theatre ...I am not averse to > older people. Most of my friends are a generation older than me. That > is what happens when you have PD at my age. But still, I prefer the > company of my own kind, my own generation. > But I have to be realistic. There w ill come a time when livimg alone > will not be appropriate for me, and assisted living becomes the best > most viable option.So why cant we have a live-in care facility directed > at people my age? > > If I exist, there are others out there like me. > > Hilary Blue (40/1 6) > > ------------------------------------------------------------------------------ > ---------------------------- > > Bernard Barber,Ph.D. wrote: > > > > Many of the members of this list may know, from my previous postings, that > > I have been very involved with Parkinson's Disease, starting about 3 years > > ago, when one of my patients, at an Assisted Living residence, had > > Parkinson's. Forty plus years ago, during my academic training, we had some > > discussion about Parkinson's. At the aforementioned Assisted Living > residence, I discovered four other > > People with Parkinson's, but little, if any help from the surrounding > > community. We started our own support group, with assistance from the > > University of Arizona, Department of Neurology, an APDA - funded program. > > In addition to the University we were connected to a young, socially active > > PWP. We also became acutely aware there was little information or > > specialized programs dealing with assisted living facilities for PWP in the > > US.Construction of the SunBridge Assisted Living Residence was completed in > > May 1998; people have been steadily moving in. Staff training and > > development is on-going and assisted by the aforementioned organizations. > > The residents' Library has a collection of books and articles on > > Parkinson's Disease, an exercise facility, and a fully operational personal > > computer with e-mail and internet links to PD web sites. The Wellness > > Director, a Registered Nurse, and the Activities Director, work > > cooperatively on the Parkinson program, and are dedicated to a professional > > level of individualized care for all residents > > etc...