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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 > > -------------------------------------------------------------------- -- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn