.. Ya know, I've always dreamed (sp?) of a place where i could live a life where one is a pampered parkie, with people running around catering to ones every whim, medications given on time, a caring shoulder to cry on (if that's what you want), other PWP around to talk about ones life and ones aspirations to. People who CARE, and can soothe the agitated moods that we get into. A place where one can live out the rest of their Parkinsonian existence in relative happiness and even have a "fun" time.
However, what do you think will be the future of MOST of US? We, who have worked hard all our lives to maybe pay off the mortgage of a little pink house for you and me; AIN'T THAT AMERICA ! .
And how about the Fred's of PD, those who live in a small trailor, with a cat for company and nobody to care if they live or die? And how about the women and men who have been abandoned by their spouse, to live in government subsidized housing, barely able to afford their meds, let alone food that is nourishing, and some kind of entertainment, other than an old TV, that they sit in front of and ruminate all day, barely able to get themselves out of their wheelchair by themselves to potty, let alone keep the place clean, do laundry and all the other things that make up a life?
For every PWP with their private nurse there are thousands who go under, and yes, even find themselves on the streets, living in a cardboard box.
Would we say that is was their own fault for being in such a position? Would we , and do we recognize that such PWP even exist?
Once again, my purpose for posting this is not to make you feel bad for posting about such wonderful places for PWP who are wealthy and can afford such luxury, but instead is to make the majority of the non- PD world realize that so many of the chronically ill live lives of poverty and lonely desparation, never being able to dream of affording such places to live, once they get to stage 5. Heck, just look at the world news as of late; as usual, floods nad famines that kill or displace MILLIONS of people, even the able bodied.
I would dearly love to be on a committee that would dispense trucks to gather up those PWP who live in such conditions ann and bring them to such facilities that you speak of, and insure that they were allowed to live out the rest of their advanced parkinsonian lives in a caring and loving atmosphere. I see MILLIONS of dollars wasted on "junk research" that only pads the pockets of researchers who can convince research granting agencies that they have a noble cause and a decent chance of doing something MAJOR towards OUR CURE; but all i see is cleverly set procrastination to ensure more future grant money roles in.
And all the while, WE suffer, WE the disenfranchised, WE the poor and working middle class, WE the people who deserve the services of organizations that you speak of, but who will NEVER participate in, because we don't have the financial mans to do so. HELL, they won't even give us the medication we need. Many PWP live lives where they really have to chose between food and other bills, and antiparkinson drugs.
I see something WRONG. I see it in my thoughts and it permeates my dreams; not for myself, for i am relatively well off, but for the millions of people suffering from chronic disease who will live and die lonely, deprived, existences.
It is THESE PEOPLE that I would like to see taken care of, and it has nothing for my own self agrandizement as being the "nice fellow" who cares about others. It is for the greater society that we live in, to really make it a place that cares for the sick and downtrodden, instead of that filthy almighty dollar. cs