Edith,

It is a rare and indeed a distinct pleasure to be under your headdress.!

SM


----- Original Message -----
From: "edith love" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, February 20, 2002 8:11 PM
Subject: Re: [sparkle] RE: The PD Umbrella- From Where I Stand


> Dear, dear, Audrey
>
> When I first signed onto PIEN and SPARKLE, I, like a great percentage of
the
> membership needed to belong somewhere.  I needed to share the me of me
that
> I had shared with no one for many years.  Too many responsibilities.  Not
> enough time.  Not enough trust.
>
> For the first time in my life I put the me of me in writing.  I not only
> wrote about myself, I wrote about my illness and what I called the
"stages"
> of my illness.  I wrote what my family didn't know, what my coworkers were
> never told those many years we looked after one another.  I had learned my
> lessons well over the years.  Nose to the grindstone.  Watch whom you
trust!
>
> Yet I didn't feel that way about SPARKLE and PIEN.  I could belong here
and
> not feel alone in my illness.  When I felt a wall of ice before me at
PIEN,
> I figured I was the new smart-aleck kid on the block who was full of ideas
> that might uproot and old oak.  SPARKLE accepted me-strangeness and all!
As
> for PIEN, I could see it would take time.   Then when I wrote what became
> the cover letter for the HOW DID WE GET HERE ANYWAY SURVEY and there was
so
> little response, I KNEW it had to be me!  Of course it wasn't.   It was
> somewhat my insecurity, PDers' reluctance and PIEN's period(excuse the
play
> on words)of PMS!
>
> Make no mistake.  I was ready to run.  I had had it!   Why, there was
enough
> in my basket of life to handle without additional headaches!
>
> It was some very special stranger-cyber-friends who convinced me to stay.
> They are the ones, some of whom have lived with those under the PD
> umbrella, whose perseverance so strongly contributed to the heart of PIEN.
>
> Newbies are greeted.  Intelligent discussions are held. Tears are shed.
> Contributors' points of view are accepted and/or debated.  No one appears
to
> be afraid to ask for advice.   There is not only warmth, caring and love
on
> PIEN, there is a tremendous amount of professionalism as well.
>
> Soooooooooooooooooooooooooooooooooooo, having said what I've said, I'd
like
> to dedicate this page to:  Audrey, Michel, Jo Ann, Bonnie, Camilla,
> Kathrynne, Greg, David, Juanita, the Barbs, Mario, Maryse  and everyone
who
> somewhere along the line gave me kind word and encouragement;  to Jorge
and
> Bob who have so beautifully dedicated their professionalism; to Barbara P.
> who trusted me, and to my  special angels Hans and John who have kept me
out
> of more than one scrape.   If I contribute anything to PIEN, it is because
> of all of you, and I do it with love, friendship and caring.
>
> Thank you all!
> E of the headdress
>
>
>
> Dear special Edith,
> It is impossible to ignore the aura of goodness that you show whenever you
> post. I feel privileged to know you even if this is the only way that we
> meet. I am sure that many feel very much the same way as I do too. For all
> of those who wait for the cure, or some diagnosis of what they have,
people
> like you make the waiting so much easier. For those as I am, who have no
> direct connection with someone with PD, you give us a way to understand
what
> it is to be closer to our special far away pwps. Thank you for being the
> person that you are my friend.
>
> Love,
> Audrey
>
> -----Original Message-----
> From: edith love [mailto:[log in to unmask]]
> Sent: Monday, February 18, 2002 5:48 PM
> To: SPARKLE - Smiling PARKies Live Easier -
> Subject: [sparkle] The PD Umbrella- From Where I Stand
>
>
>
> The paths to PD are many, and if one looks under the PD umbrella one can
> find:  PD, PD+ and the undiagnosed who have some of, maybe all of, the PD
> symptoms but for one medical certainty(if there is such a thing) or
another
> do not belong on the direct PD path.  To make our situations even more
> complicated, one can observe that our illnesses are many and varied.
When
> compared we don't even resemble one another!
>
> We are sometimes the ones who often feel even more isolated and forgotten
> than those outside the umbrella.   We feel isolated because we know there
> are others like us somewhere, but no data base has been developed to
connect
> us.  Like our PD/PD+ brothers and sisters, we, too, wait for a cure.
> However, we know up front "this cure" might not even apply to us.  We feel
> forgotten because we are the ones who are so often not included in PD
> questionnaires and/or surveys and/or reports and studies(that's why we
> included everyone in the HOW SURVEY).    We don't qualify though we have
> much to contribute.  Were it not for PIEN'S and SPARKLE's camaraderie we'd
> feel more than forgotten.  We'd feel lost.   We're like the short country
> road that's not on the map.  Hardly anyone knows we're here!
>
> E of the headdress
>
>
>
>
>
>
> Official site for Sparklelist
> http://geocities.com/sparklelist/
>
>
>
>
> Official site for Sparklelist
> http://geocities.com/sparklelist/
>
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