Thank you, Joan.  Your efforts are exemplary, and if we each could
only do a fraction of what you do, we'd really be making some noise!

Rick

----- Original Message -----
From: "Joan Snyder" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, April 20, 2005 2:12 PM
Subject: a few ideas


> My dear fellow listmembers:
>
> i am completely unqualified to make any suggestions about how to not
> direct your anger at a certain undesierable president. i argued that
> point to no avail during the election. i can only offer to you some
of
> the things that help me get through each day. the only creditials
that i
> can offer you is my dealing with pd for over 15 years (if you would
like
> to read more about my life with pd, please go to the website listed
> below). i have grown weary of butting my head against a brick wall
so i
> have turned to more useful ways to spend my time.
>
> it is hard and it only gets harder to find reasons to move in the
> morning but eventually pain is the most powerful motivator. i cannot
lay
> comfortably once my sleeping meds wear off so i figure if i'm going
to
> hurt, then i might as well hurt and be productive. i go into my
computer
> room (more like a trainwreck than an office) and i check my
calendar. if
> i have nothing sceduled, that brings a feeling of panic to my soul
and i
> quickly bring out a list of those things that i have always put
aside to
> do "someday." after looking at that list and discovering how
distastful
> all of those tasks are, i usually can figure out something more
exciting
> to do and then i'm off to the races.
>
> during the political election, rather than to try to influence
people at
> a national level (as Bruce Springsteen tried but even he couldn't
pull
> off); i dipped my toes into local politics where i have a bit more
> confidence. i went to springfield, il at Rep. Lane Evans request, to
> give a brief statement at the press conference announcing his
> re-election bid in a campaign that was down & dirty. his opponent
told
> me that he was doing his constituents a disservice because his pd
slowed
> him down physically from getting to meetings, etc. i answered her
with
> one word: BULLSHIT at the Lane Evans unity dinner which was held and
> which Lane was unable to attend. (i found out thirty minutes earlier
> that i would be speaking to a crowd of almost 300.) i asked the
crowd,
> "when was the last time you heard of anything being accomplished in
a
> hurry in d.c.?" i also campaigned for barrack obama.
>
> this may be way too much for a lot of pwp's to handle doing when
each
> movement is crossing a new threshold in pain, but that does not mean
> that you cannot be an effective messenger of pd awareness and
education.
> when i get into a situation like that which happened to ray
recently, i
> try to use it as an opportunity to teach. i'm sure that the younger
> woman didn't realize what a "faux pas" she made in saying that "it's
> good to see someone w/ pd out enjoying themselves." likewise, i do
not
> allow people to say that i suffer with pd. i deal with pd and i go
where
> i want, when i want and i do what i want (if i can find a ride). i
tell
> people that while yes, i do have parkinson's disease-it doesn't have
me.
> i start out with a few clever remarks if i can remember them and
then
> launch into the “did you know and do you realize?" part of my
program.
> finally, i round it all out with an invitation to the pwp to become
> involved in our pd community in central illinois.
>
> we have developed a three-way program here in central illinois that
we
> feel can best accommodate the needs of everyone who needs us. the
first
> group is for seniors or anyone feeling senior on said day. this
group
> meets once a month and it gives a lot of people the opportunity to
> socialize and see that they are not alone with their disease. this
group
> doesn’t get very political or are they very much into the state of
> current research and that is just fine with them.
>
> recently, my girlfriend & sidekick. holly, started an early onset pd
> group. she will be the one to visit the doctor’s offices and round
up
> statistics and to keep everyone informed about the research, tests
and
> trials for pd in the area and she is also our pan representative.
>
> i have taken on the role of fundraiser, which is where my talent
lies.
> but i have enlisted a Bradley University service fraternity & the
> Jaycee’s to help with the next few Shake, Rattle & Roll events
thereby
> assuring that it will become a yearly event-with or without me.
>
> wat we have tried to come up with is a loosely affiliated network
that
> will fill the needs of everyone in the pd community. if even this
much
> involvement is too much for your level of comfort and safety, then
> please, don’t just become a couch potato. even just by appearing in
> public-going to the bank or out shopping, you can make a profound
> statement about what it is like dealing with our pd. if by holding
up
> the check-out lane in the grocery store is what you are good at,
then
> tell those who are impatiently waiting behind you that you have pd
and
> that you are doing the best that you can do. More than likely, you
will
> start a discussion and at least a conversation about pd…and we can
use
> all the publicity that we can get!!
> --
> Joan Blessington Snyder 54/14
> [log in to unmask]
> http://www.pwnkle.com/jes/jes_web/index.htm
> “Hang tough……..no way through it but to do it.”
> Chris in the Morning Northern Exposure
>
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