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thanks Joan for your ideas. I do try to engage people in conversation when I go out and most are very nice and interested. I went to a local support group on Tuesday and dominated the session with the psychologist who told us to count our blessings, be positive by changing our thinking and be active. He has some good points but I wonder if he would have said the same things in an Alzheimer's, ALS, bi-polar support group. He was assuming I was of sound mind. When I had cancer I developed panic attacks when I became allergic to chemo. At this time around 1979, 1980 panic attacks were just being recognized. When I tried first to get in a group I was turned down because I had a "reason" for the PAs and others didn't they said at a UClA branch hospital. Then they changed their minds, but I was too busy then teaching, although I could barely walk down the crowded hallways in the school to the restroom. Over the years they gradually diminished and PD pretty much ended them. although I still have to have a booth on the wall in a restaurant. At the group this Tues I learned again people want to hear about heroes, heroines and happy endings. A few people came up to me and asked me to return, but I think most felt like the psychologist I just liked being miserable. I will give it another try. Most people just don't say anything and their senses of humor are pretty lame. Ray ----- Original Message ----- From: "Joan Snyder" <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, April 20, 2005 11:12 AM 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