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Ray - Don't worry about what others think. WHAT DO YOU THINK? Do YOU think you enjoy being miserable? That's the question, and only you have the answer. Best to you. Jo Ann On Thu, 21 Apr 2005 11:31:32 -0700 rayilynlee <[log in to unmask]> writes: > 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 > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn