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
> >
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>

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