 |
 |
Beth L... Beth, m'dear... noooo PROBLEM!! All us single Parkies will just get together somewhere in the middle of the world (that's 'round San Diego, California, I think), <giggle>, and buy us a large apartment building (with an elevator, pool, Jacuzzi, AND a resident movement disorder specialist/ombudsman, plus (as long as I'm at it) a "house" Mercedes Benz or two so we can get out and about if we wanna. Joking aside, Beth.... A "group home" kinda thing IS what I'm hoping to have as an alternative to living entirely on my own or with one of my daughters as I get older, or if my condition worsens... or both. Since there IS no such thing (that I know of) in Los Angeles, I may have to just get the ball rolling myself, before I actually NEED such a place live in... Hang in there.. and don't panic.. yet. <rueful smile> Barb Mallut [log in to unmask] -----Original Message----- From: Parkinson's Information Exchange On Behalf Of Elizabeth Leslie Sent: Tuesday, May 06, 1997 1:33 AM To: Multiple recipients of list PARKINSN Subject: Info/Hospitalized PWP Barb Mallut, you wrote: > >Many thanks to Joy for making such valuable tools for those of us PWPs who >face a hospitalization. > >I'm due to have surgery ... and am scared to death - NOT of the surgery itself, >but of possibly uncaring, oh-so-busy-and-overworked AND/OR non-PD-educated >physicians and nursing staff!!! > >Also, it's scary to think how non-PD educated (maybe >"resistant-to-PD-education" is a better term?) both my two daughters are. > >The fact of the matter is I wish there was a PD-savvy paid advocate I could >HIRE to remain by my side at the hospital! > >Going into the hospital armed with Joy's PD-information Forms (with some >additions I've added to the form) IS going to make the whole situation a >little bit easier for me. Having managed to bring to heel my earlier near-paranoia about being a single PWP, I find it resurfacing as I read the postings on the perils of hospitalisation. It really IS very scary to project into these kind of possibilities knowing there is no one close by to take such situations in hand. And it really concerns me greatly, too, to see my kids so disinterested, so (YES, Barb) resistant to PD education. I really fear for the future when I can no longer care for myself as I can now. And it seems the better job I do of it now, the less family are inclined to take my PD seriously, so that when I am no longer able, nobody else will be properly prepared to take over. I don't push this. I want my kids to be able to live their lives. It distresses me to know that my PD is going to be their burden. So I just let it be. But deep down, it is very frightening. Thank you Joy - and others - for sharing info on this with us. Beth Leslie