John...I am forwarding this letter to you at Deborah Setzer's request since
she is unable to post it herself after being removed from PIEN...Joan
Hartman

----- Original Message -----
From: Deborah L Setzer, M.A.
.


  a.. To: [log in to unmask]
  b.. Subject: Chiari is OFF-Topic for Parkinsn
  c.. From: John Cottingham
<[log in to unmask]>
  d.. Date: Fri, 23 Aug 2002 19:48:31 -0500
  e.. Reply-To: "Parkinson's Information Exchange Network"
<[log in to unmask]>
  f.. Sender: "Parkinson's Information Exchange Network"
<[log in to unmask]>

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All of this banter about Chiari is entertaining and enlightening but it is
off
the topic of living with and being about Parkinson's.

I am sure it is distressing to be unsure about your diagnosis but this forum
is
governed by the Parkinsn Charter/Guidelines at:

http://parkinsons-information-exchange-network-online.com/parkinsn.html

Appeals for funds no matter how urgent and worthwhile are beyond the scope
of
our Guidelines.

We have shown our kindness and concern daily since our inception about 9
years
ago. I am sure those without Parkinson's but who have something else will
find
a forum somewhere where they can find support. If any list members wish to
keep
up with the current saga can do so by email rather than by posting to
Parkinsn.

John Cottingham
co-owner Parkinsn


John,



  I have read your post here in my hospital room over and over again.  I
fight back tears when I read that you want me to go and find another forum
for support.  How could you ask this of me at this point in time?  It feels
cruel.



  For the past 3 years, I have lived with PD+ day in and day out.  I have
laughed and cried with the friends that I have made along the way, many from
this list.  Everything that I have done to fight PD has been done for the
masses in mind and not isolated upon myself.  My desire was to help others
who might be reaching that bump in the road that makes them feel like they
won't survive it and know that they can.  Others survived it and so can I.
I have tried to show compassion to others on this list, I have tried to
instill a sense of hope and faith in the unknown.  I have tried to help
people help their doctors and help themselves.



  I will say this in anger, not a good thing for me but I need to get it
out.  John, just because I didn't treat the symptoms and lie quietly down
and die because I totally accepted that my brilliant doctors could not
possibly be fallible and wound up being right.. You want me to go away? The
Chiari info is far from being simply entertaining.  Some people with PD
might actually have this and it needs to be checked out.  How many will
suffer like I have if they don't know what to ask their doctors to look for.
Even if they don't have Chiari, at least they are one step closer to
accepting what they do have.



  And as far as the autopsy thing goes.  PET scans have been around in the
US for 15 years for checking for PD and PD+ syndromes.  It seems that our
doctors and insurance companies have kept this info very quiet.  We do have
something better than autopsy to PROVE or DISPROVE our PD diagnosis.  Even
the doctors that I have seen up here these past 2 weeks have told me...
Based on your mri, ct, blood work and clinical observation over time, I too
would dx you with a PD+ disorder.  It is only the PET scan that allowed them
to get past their initial impression and start trying to help me.



  And John,  "If any list members wish to keep up with the current saga..."
John, this is no saga or soap opera that I am going through.  This is a very
painful, physically and emotionally price that I am paying for 3 years of
being dx with something that I do not have.  The support that has been shown
me gets me through these rough and scary days and nights when I wait for
what torture the doctor will want to put me through next.



  This list gives support to other people's "saga's" and helps them make it
through.  Why would you be so cruel to take away my support system and label
my life as a "saga" and leave me alone and hurt with no where to turn?
Please go back into the archives and look at the posts that I have made.
You will find that I never got into arguments with anyone, that I supported
the people online as best I could with the knowledge that I have.  I was not
vengeful, greedy or self-focused.  I have lived my "nobody" life openly so
that others may know that they are not alone and with faith, there is always
hope and with prayer, anything can happen.



  To be quite honest, I'm not so sure that it wasn't the prayers that have
gone up for me and Robert that took the dreaded disease of PD away from me.
Now we will try to find out what it really is and do something about it.  I
hope others will follow in my footsteps and slap their doc if he says there
is no way for us to know what you have until autopsy.  That simply is an
ignorant statement and now I have the information to back my feelings up for
anyone who may have the need of it.



   There are so many copy cat diseases that it would be impossible to keep
only those with PD in this group.  Some folks will just pass through so that
they can read and figure out for themselves that they don't have PD.



  Answer a question for me, why do you want everyone to abandon me now that
I found out that mistakes can be made in diagnosis and I am living proof of
it.  John, I'm in the hospital, frightened and alone, please don't take my
friends and support system away from me.  I need them to make it through.



Sincerely with hugs and warm fuzzies,

Deborah aka Tenacity

 But for the Grace of God, Go I!

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