Forwarded from Lorraine Jeffe ----- Original Message ----- From: lorraine jeffe <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, April 21, 2005 11:08 AM Subject: Re: a few ideas > Dear Joan, > > Thanks for your constructive comments.It seems no matter what happens we > still have choices., and it probably is different for each of > us --depending on the severity of the PD, support,etc. > > PD for me has been an amazing learning experience .Very early in my PD > journey I learned that being an advocate---thanks to PAN---- was an > enabling experience that helped me have some control instead of feeling > powerless.It also was a socializing experience of meeting others that had > PD.What a fantastic group!! > > The last few months have seen an acceleration of my PD and the use of a > walker.hated the thing, but the other choice was worse.( I now walk over a > mile with my "Chariot ") I also freeze.NO way is it going to stop me and > I go where I please.I've had some real challenging times.The kindness of > strangers has truly been amazing.If I feel it is appropriate I discuss > PD----not a cure yet --a common idea-- what it has meant to me,etc.Frankly, > sometimes I'm on the verge of tears and I usually say it's the pits then. > Some people's comments are quite awful, but they mean well > > Being a people person it is essential for my mental health not to isolate > myself.Another thing that helps me is physical exercise. > > As a senior citizen I possibly take a different approach. Again I've learned > that chances are that my contempories usually have some physical problem. > > Joan, altho, I never have meet you , I know that you are an amazing person. > > Ah, yes humor-- a must for me. One doctor told me I had a cavalier > attitude---certainly was reading me wrong. > > Altho, I've had bad days I have not suffered from depression ( have been > depressed) and for those that do my heart goes out to you. > This is what seems to usually work best for me.What really would be best is > a CURE!!! > > Lorraine Jeffe > > > Comment: thought it was Engels who said religion is the opiate of the > people. ------ > > > > > ----- 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