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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