Ivan:
When are you going to wake up and admit that you made a stupid mistake in
scheduling the appointment at the end of your visit instead of at the
beginning , thus giving you flexibility. I voiced my opinion about this long
ago and I repeat it now. I understand that you have  PhD degree. I am
surprised that someone capable of getting such a degree can be so stupid
otherwise. Nobody, much less the NPD owes you anything.
Bob Anibal
----- Original Message -----
From: "Ivan M Suzman" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, January 16, 2000 11:07 AM
Subject: ACCUSED OF SLANDER ON THE INTERNET: A "welfare-case" PWP speaks out


^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
 Ivan Suzman        50/39/36       [log in to unmask]      :-)
 Portland, Maine    land of lighthouses        23 SNOWING  deg. F   :-)
********************************************************************
Hello PIE-net,

What is to be done when an internationally-admired PD
Foundation attacks a PWP continuously for 5 years,
accuses the PWP of "slander",and NOW, goes and hides?

  Unfortunately, the National Parkinson's Foundation is NOT helping
matters by
suggesting ON THE INTERNET that I have somehow
SLANDERED it (see letter below), in my effort to get reimbursed for my
savings used
for a 1994 trip to see one of their clinic doctors, who edited the NPF
Report at that time, but who did not show  up for my confirmed
appointment in their building, after I had travelled 1300 miles each way,
from MAINE to MIAMI, with a CNA. who took care of me.


 I think that there is a solution.  I am wondering if someone close to an
extraordinary human being,  courageous Olympic flame-lighter, Mr.
Muhamad Ali,  who is a personal hero to me, and like me, a brother
against
the VietNam war, as well as a suffering PWP, has to be called; I
KNOW that he could get this whole matter RESOLVED.  But
why should he have to be distracted from his difficult struggle against
PD?

Is that the step to take to end the NPF's attack on me?
Have the NPF officers forgottfen that it was my telephone calls that
brought Archbiship TUTU, by the grace of God, into our midst,
and that he issued his prayer for us because God gave me the
strength to work with him, his staff and Barbara Patterson?

I will be praying today that ,by the time I sing in the
Martin Luther King Gospel Extravaganza tonight,having
been our local MLK Committee Co-Chair in 1985-86,
that my six-year struggle with the NPF will END.

Can SOMEONE get this letter to Mr. Ali's office
at home, PLEASE??
I do not yet have direct contact with him by e-mail.

Here is my new letter:
+++++++++++++++++++++++++++++^^^^^^^^^++++++++++++++++++++

Dear Nathan Slewett, Larry Hoffheimer, and the NPF upper
echelons.  And PIEN subscribers (Parkinson's International
Exchange List):

Where do we all go now, as Dr. King said, community or chaos??

Please forgive me, list-founder Barbara Patterson, for I must
not hold back the truth of this matter .  If I am
silent, someone else could suffer as I am.
This NPF  fiasco involves, now, Simon Coles'
marvellous Parkinson List archives.

And for friends and angry  PIE-netters,
folllow Hans van Genugten's advice;
please use the delete button
if you are not interested it what follows.


A very low-income PWP made a long trip to the
NPF Clinic for an appointment in 1994.No
doctor appeared. We waited 3 hours  in all. Financially, this
still hurts.very badly.  This PWP needs reimbursement
for $2250.00,  and kinder treatment.   I am that injured,
"welfare-case" PWP, whose NPF appointment was abandoned.

There  has been NO contact from Florida, from the NPF
to me.  NO outreach.  No effort to help solve the mess
that I will never forgive,  until justice is done.The NPF
is trying to ignore me.

   I have JUST a few days ago uncovered, however, having for the first
time ever gone to Simon Cole's  wonderful PD archives,
that all of the world can read about the NPF's position, in
what Melinda Brown called, "Ivan's Slander." Her
post was "hidden" to me until I found it last week, at Simon
Coles' PD Archives website. It was written in January, 1999,
just about a year ago.

She WAS the National Parkinson Foundation's
Public Relations officer until MARCH , 1999.
Then it seems that Melinda was er, um, fired??  Took another
position elsewhere?  Got out of the devil's den??
Took the heat, to save face for the NPF?

 Sorry, I can't help feeling a little harsh after so much pain.


She was not even employed at NPF, 'til several
YEARS AFTER the 1994  fiasco.  She therefore
was following orders and had NO first-hand knowledge.
. Unless she was on Jules Verne's time machine????

I'm sure that if YOU received $8000/year in
social security, and your savings were gone,
and the NPF did this to YOU, you would
not just sit around , and accept the loss.

You'd think that the NPF would have better things to do
than attack PWP's.But no, they just waste time
attacking my reputation and my character.

  Really, Mr.Nathan Slewett and Mr. Larry Hoffheimer,
 I am not the villlain that the NPF makes
me out to be.  I have tried to help many,
many people who are my fellow PWP's,
Including some in Florida. SO PLEASE,
stop hiding away like nothing has happened!


THE NPF's official line is that Doctor Sanchez-Ramos
never was working for the NPF.The NPF says that
 the doctors at  NPF are not employed by the NPF, at
the PD clinic in the NPF's clinic building, but they
are all UMiami , not NPF doctors. At least,  in 1994.
This includes the secretaries, then, too.

The NPF says that the UMiami rented out the space from the NPF,
so it paid for  the space for its doctors and secretaries.
SO, the NPF says the Univ of MIami is responsible!
But UMIAMI says, no, go away. Go back to the NPF!

NOW PEOPLE, WAIT A MINUTE!

What does the doctor say? Apologetically,
he says it was a secretarial error. But the
NPF (Julian Pearason) confirmed the appointment
that very day. Twice by phone to the nearby Day's
Inn, where we had a room.

Was it the doctor's fault?
The secretaries?
The administrator's?
The University?
The NPF?

No it was my fault, according to the
NPF.  (AAAAAAAAGGHHHHHHH sscream)!!


DOUBLESPEAK!
QUADRUPLESPEAK!

All I know is that the  NPF
has the knowledge to
straighten out  this MESS.
I don't .  And I was wronged.

The NPF position is untenable,
manipulative and unacceptable. And insidious.
And divides us.

Until the NPF takes responsibility
for  what it is now publicly
doing to me,  it cannot say
it is truly helping all PWP's.

My vote goes to the PDF and PAN,
and the APDA.

I am not afraid of criticism
because I know what happened,
my hired CNA at that time ALSO
knows,  and God knows.

Defiantly trying to get this
mess RESOLVED.

IVAN SUZMAN
50/39/36

just another PWP who feels like
the mighty and the meek are battling again