parkinson's information exchange cross-posting

.... cont'd from previous posting

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from lavenderlou
posted 03-16-2002 07:24 AM
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hello terry bowers,
and janet, --
when I know people are sick and dying, or mis diagnosed with MS for 2
years, because she was too young to be diagnosed with Parkinson's
disease,or people lose spouses, there is no councelling available for PD
patients and their families?
I realize we will always debate,
I thought working for the cause meant giving
what a PD patient had to give,love and zeal.

I am against spending $5000 dollars on a dress made by Givenchy to attend a
party with hardly any patients there, and entertainers's charging 10,000
dollars per couple, to meet with the inner circle of their foundation and
to that I say, it just greed -please - just skip the big ta - do! and send
this money to a direct source!

I believe in the truth, these parties are showy, and the expense is too, we
are all human, some are self proclaimimg, saviors of society!
There is another way to do this The National PD Foundations of done some
good, but will they really be happy, when they lose their jobs?
cars?
homes?
That is just stuff, Ladies and Gentlemen!
Aren't people worth more than stuff?
Actually at the parties, not all the guests are self seeking, some are
truly nice people, but that is the problem with charitable corporations,
they say they never make a profit?
The good things in life are free?
please read more - or you can read the source-
http://www.ryomagazine.com/october/editorials.htm

Let me tell you a story. It's a story about the charitable nature of
humans, governments, and organizations. A story that in a perfect world
should be a source of inspiration and warm/fuzzy to all.
As prologue, there is an organization many you are probably familiar with.
ASH.ORG or to be less acronymic, Action on Smoking and Health. Now these
folks claim to be interested in your health but many people, including we
at RYO Magazine (as well as a large number of our readers), suspect that
the true agenda of ASH and many other anti-smoking groups, likely as not,
may not be so altruistic. Their website comes close to being a hate site
with all the extremely negative, vindictive and inaccurate ranting of those
obsessed with smoking in general, and smokers in particular. It is a fact
that first impressions can be devastating. Little inaccuracies can grow
into larger suspicions. For instance, there is a little blurb on the site
that states ASH is a .org organization and insists frequently and
vehemently that their .org designation "proves" they are an organization
dedicated to the public good. Specifically, here is their little paragraph:
xyz.com=a COMmercial web site, primarily designed . . . to make money
abc.org = a nonprofit ORGanization, primarily designed . . . to serve the
public...  snipped ...

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from janet313313
posted 03-16-2002 10:04 AM
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no doubt about it tena
the tobacco machine has been selling poison and pulling strings to ensure
the money keeps flowing for decades, and around the globe.

i'd hate to colour all of the "disease orgs" with the same paintbrush,
though. i just can't imagine that the orgs dedicated to easing cancer or pd
or ad or ms or ... have that kind of lobbying power or that kind of
financial interest in maintaining the status quo.

you might be interested in reading some of my thoughts about how such
organisations should be run - see the "what's new" page at my web site

i agree with you that the dollars collected from the public have to be
accounted for; i belileve that there are some watchdog orgs that monitor
the effectiveness of such orgs in terms of how much of the money donated
goes to overheads and how much goes to the cause.

we can act responsibly on our own behalf by making our preferences
perfectly clear to the pd orgs here and now [as we are doing]

we need to keep asking
who's working for whom
and just what is the purpose here

janet

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from Jaye
posted 03-16-2002 11:37 AM
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I am torn about this issue, too, and expect I always will be. It's not a
new one: when people criticized Jesus for allowing Mary Magdalene to put an
expensive ointment on his feet instead of feeding the poor, he told them
"the poor will be with you always," but that's a story told elsewhere.

So, yesterday as I was assembling a pan of lasagna for homeless people at a
shelter, I thought about the upcoming PAN forum, and whether I would go if
it weren't within commuting distance of my house. Probably not, because the
hotel bill would be beyond my means (according to my own priorities), and I
wouldn't be able to make so much lasagna. But would the program be worth
it?

I looked again at a copy of the agenda. Wow, continental breakfasts, box
lunches, tons of information, brilliant speakers--where's the luxury in
that? I'll put on my best outfit from LLBean and go, and try to keep my
drug-heavy eyelids up all day. There is no dinner mentioned on the agenda
itself.

There is a swanky awards dinner, scheduled at the end of the conference,
presumably to save the higher-ups some airfare and hotel bills (score one
for the Earth). Perplexity creeps in. Some pay, some get free tickets if
they're well known. PAN participants can get half price. The other half of
the price, I'm sorry, is still WAY too much for this Parky. Maybe if I
hadn't had to retire because PD kept me from doing my job well enough to
hang on, maybe if I didn't spend my spare change on prescriptions (yes,
those copayments do add up) and on remodeling for my anticipated mobility
problems, maybe a lot of things. Besides, what would I wear? (Tena, I
agree--I don't think a price tag of over $120 on has ever hung in my
closet.)

I will go home and watch the dinner on C-Span. Such doings are not for the
likes of me, apparently. I only wish it didn't sound so much like an
"everybody's going" kind of thing in the conference literature. It does
seem like such a discourtesy to exclude early-retired PWPs to spare the
Senators having to see our LLBean clothes, but that's not PAN, that's the
dinner, which has its own tradition, and an honorable one at that. This is
my social conscience talking. In reality, I hate to stay up late, and I'll
be happier eating my own lasagna with my shoes off. Anyone else want to
come over?

So there's my set of views, for what it's worth. I expect to get a great
deal out of the conference and to enjoy it very much. You who go to the
dinner, don't forget to wave towards the cameras and say "Hi, mom" and then
"Hi, Jaye"!

Jaye

Edited to add: my grumbling here is really a kind of sheepishness about my
own position of privilege compared to the people I cooked for. With plenty
to eat, medical insurance, a house to live in, a car to drive, a wonderful
family, fabulous friends, life has been good to me. Why not to them? Sorry
if I'm boring people. Good night. -J.

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from lavenderlou
posted 03-16-2002 11:24 PM
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Dear Jaye and Janet ~
you are both real...I love real!
reality is the best!
I have been to the whole schmear and I have spoken to people to tell them
the truth, I want no sympathy, I don't want applause, and I don't care if
everyone thinks they need to go...but if I could, and I was rich, like the
new Prez. at PAN is, I would call every caring rich friend I had, and I
would use this as a paid training session for the all the Patients with PD,
because when I went they had all except me, I had my own agenda [Image]
Go and become free advocates, I have always been a volunteer, but when
asked to hop on a plane, get a bit a training, and go to Congress and
senate, WHY SHOULD PARKIES HAVE TO PAY?
I know this,if they wanted to they could write it off as an official
meeting...
They ask why?
Well I ask PAN why not?
love
Tena
[Image]
Bless you both!...
I am not interested in ever attending again,
We all have a mission in life, dear jaye- God is blessing you for helping
others, I would rather have lasagna with you.. and janet you are brilliant
write a book...and I will buy it!

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janet313313
posted 03-17-2002 12:49 AM
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'write a book', she sez.
well, it just so happens, i am.
at the first rough draft, i am.

'i will buy it' she sez in the same breath as
'why should parkies have to pay?'

yew gewf!
i am looking into ways to have it printed at no cost or at least at no
profit
(possibly as big as 1000 pages - suggestions welcome)

it's the tale of my first five years on-line with all of my cyber-siblings
in pd and cd

how can it miss??!!

janet

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from paula_w
posted 03-17-2002 01:29 AM
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Nothing clouds an issue like money. Money is the ultimate deceiver. If
you've read the Bible, you know it's clear that you are supposed to share
with less fortunate. But that goes for everyone.So we don't dwell on the
fact that a relatively small group of people world wide could collectively
solve many problems and have some left over. We are all supposed to share.
If you aren't - well ...

Janet, your point is well taken about helping quietly.. I think it applies
to individuals, do u?

I don't know why it takes me so long to learn some things but heres an
oldie but goodie that i finally believe wholeheartedly. It's just as much
about how you react to a wrong, as the wrong itself. So maybe we don't like
spoiled rich people being hero worshipped, and rich people with tans and
face paint spending $500 on a dress for a $250 banquet, where you have to
pay to drink with the celebrity. Some would say - whatever it takes. Others
would say - I wouldnt pay for something so outrageous from a pwp. But I
think the idea is to be neutral; its just not you're job to judge it. If
you do react negatively, you have created another moral dilemna.

or - like everyone's had it suggested at some point - just picture them all
naked.

A well-renowned psychiatrist once said he believed that everyone was always
doing the best they could -given that moment in time..I disagreed
completely then and still do...think he could have been suffering from the
"I''m more important than you are syndrome" to even remotely presume
anything so complicated as"all human behavior at all times".

Point is, these people do get away with incredible liberties, because we
empower them, and then it becomes just a big, sad
illusion. An excercise in artificiality. for example,, whats the first
thing that comes to mind when yu hear the name Dennis Rodman?
And so is there a pd elite? Probably, but it isn't my problem, how I react
is my ultimate plus or minus.

Personally, I think one's importance should be judged by the thickness of
their face paint - right? Just an idea I picked up in south florida.......

"It's gonna take time and a whole lotta spending money"...George Harrison

paula

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from janet313313
posted 03-17-2002 12:59 PM
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believe it or not, i do think that at any given moment we all are doing the
best we can with what we have and with [this is the key] what we've learned
so far

it is a continuum, a constant learning, requiring ongoing re-evaluation and
assessment

we have a choice in that we can decide to do this learning work now or
later

i've lost the profit motive; i am no longer impressed by anyone's wealth; i
no longer need to wear liz clairborne silk pant suits to establish my own
prestige; this is not a judgement on anyone else, just a statement on which
way my own priorities have shifted

i think about the mission statement of all the pd orgs -- ease the burden
and find the cure -- and wonder how a fancy dress dinner addresses those
aims -- and wonder whether another method might be more efficient -- and
wonder at the news article i recently reposted about the 44% of parky
residents in long-term care facilities who don't even receive
antiparkinsonian meds

maybe one aspect of this discussion is more comfortable for some to think
about right now than another - and that's okay too - that's part of the
continuum

i guess thinking about my questions might make some uncomfortable, but if i
don't ask, i feel uncomfortable, and i ache for those who cannot ask

janet

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janet paterson: an akinetic rigid subtype, albeit perky, parky
pd: 55/41/37 cd: 55/44/43 tel: 613 256 8340 email: [log in to unmask]
smail: 375 Country Street, Almonte, Ontario, Canada, K0A 1A0
a new voice: http://www.geocities.com/janet313/

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