Dear Melinda and Listfriends,

I patiently and quietly have answered everything Melinda asks below,
hoping a solution can be found as quickly as possible.  I have interlaced
my responses with Melinda's text.

Sincerely,
Ivan Suzman
Parkinson's patient and  volunteer advocate

On Mon, 1 Feb 1999 12:38:12 -0500 Melinda Brown
<[log in to unmask]> writes:
>Dear List Members,
>
>I regret that Ivan Suzman uses the Parkinson Listserv as a means to
>vent
>his frustrations regarding NPF. As Dale Severance so eliquently wrote,
>NPF
>works tirelessy for the rights of the PD community by funding the
>most
>innovative research and educational programs.
>

Melinda, I wholehearatedly share Dale's vision and your belief.  That is
why I sought treatment at the NPF, even though it was a 3000 mile round
trip from Maine.  I had full trust in the NPF in 1995.

It is tragic, and for me, horribly painful and costly, when I was not
seen. I am glad that at least you are responding.  All along, I have
dreamed that we could somehow talk this out, and the PD community would
weigh what has happened, and try to encourage a solution.


>In the case of Ivan Suzman, which incidently happened well over 3
>years ago
>(prior to my employment at NPF), the University of Miami Doctor that
>Mr.
>Suzman was scheduled to see was NOT a no show.

Melinda, you were not working at the NPF, then.  You were not an
eyewitness. You are going on what you have been told. I can understand
your being upset, but to use the word "slander" is a shock.

In fact, we never knew he was not an NPF doctor, but I guess a UMiami
doctor. All we did was follow what we were asked to do.  The NPF set up
the appointment. Mr. Pearson told us to appear in the NPF building to be
examined by the physician who edits the NPF Report (Dr. Sanchez-Ramos)
He seemed so very willing to help me.  I was so grateful to be able to
get an appointment,  because I was so impressed with the NPF.

 Mr. Pearson showed the CNA who took care of me and me through two
wonderful floors of research laboratories.  We were very impressed!  That
tour went from 1:00 to 2:00 PM.  It was a very special feeling, to
actually see lab after lab of scientists from all over the world, trying
to cure Parkinson's Disease.  This wonderful commitment to research made
me feel like there was really HOPE for a cure.
I still feel that way, although I now know how hard it is for us PWP's to
be well enough to  make our presence felt, because I am in my 13th year
now, and the battle is constant and tough.

Melinda, to continue,
 despite two telephone confirmations from the NPF to us for the 2:00 PM
appointment at the NPF,and when Mr. Pearson could not ascertain where the
doctor was, and when there was no other doctor to see me, we waited and
waited nonetheless. Mr. Pearson had done all he could, but never made any
contact with Dr. Sanchez-Ramos.

 He like most Doctors
>was
>running behind schedule. Therefore, had Mr. Suzman chosen to wait
>instead
>of leaving he would have been seen.

Nobody could find him.  We stayed as long as we possible could--we waited
until about 3:45 and finally, still NO word , and NO other Doctor, so we
ASKED Mr. Pearson what to do, and he told us he had no idea what had
happened, and had never faced this situation before.  He told us there
was no guarantee of finding Dr. Sanchez-Ramos, or another doctor.  He
seemed as upset as we were.  HE walked us out to the sidewalk, and even
scanned up the street towards the hospital building, in case the
physician was walking down the sidewalk!  We were never told that he was
late.  Mr. Pearson only said that perhaps he might appear at  5 or 5:30
PM.  No guarantee.

We had to leave.  The CNA was a newlywed with a wife and a job to get
back to, and the tickets were for early the next morning,
non-transferrable, and not refundable.  We absolutely stayed as late as
possible.  We also had to take into consideration many factors, including
my need to rest, and not overusing the CNA, who had a long evening of
travel , motel and pre-dawn awakening for the return trip.


>
>And, though the office of the Doctor Mr. Suzman was scheduled to see
>resides in NPF headquarters, the Doctor was not an NPF employee nor
>was his
>secretary that scheduled his appointments for the day.

If these details are true, they do not match with what 2 personal care
attendants and I heard on Thursday afternoon, after Mr. Pearson
fruitlessly tried to find out what had happened.  While I was out, my
answering tape-which long ago was lost- had an apology from Dr.
Sanchez-Ramos.  He said  the other doctors at the NPF clinic and he
missed my appointment because

"I only had one-fifth of a secretary."

We talked about this is in Maine for several hours. We guessed this meant
that four other physicians shared the services of one NPF secretary, at
that time.  We called the secretarial pool, and this statement could not
be clarified by them.
>
>NPF's headquarters in Miami are located in a 4 story building. The
>first
>floor is dedicated to the Foundation operations (this is where my
>office
>is). The 2nd Floor is LENT out to the University of Miami Neurology
>Dept.
>This is where patients receive treatment from UM's Doctors.

At that time, I do not know what the arrangements were- all I know is we
did what we were asked to do. We never were told of any UMiami
connection.

 The 3rd
>and 4th
>floors of our building are dedicated to research and house our world
>class
>brain bank.
>
>Thus, NPF was not responsible for the University of Miami's Doctor
>that was
>late for his appointment.
>
Eventually, in late 1996, I tried contacting the UMiami Medical School.
They wrote and said that they were not responsible.  I felt like two
giants were avoiding talking with each other, and I was left dangling in
the middle.

>As we have stated before, we are very sorry that Mr. Suzman was not
>seen by
>his Doctor, however we feel the situation was not in our control.

I have never understood your position until now, except to say that the
NPF did admit a secretarial error on our List, in, I think, October of
1997.  You were the author of that post.  Then your office was shut down
and did not take phone calls for several days.  Do you remember?

I wonder if someone can get your letter out of the archives.  I do not
have web access, or  I would provide it here.  I hope my memory is
correct, Melinda.  Please forgive me if it is not.  Could you please
explain why you admitted the secretarial error, if the U of Miami is
supposedly  responsible?

Perhaps now it is clear why I have always felt the NPF could work through
the facts with me, come to an agreeable solution, and we could all move
on to curing PD.  I speak as an advocate now, but please try to
understand that I am also a patient who is still "young" and trying very
hard to be honest, patient, and hopeful, even though my life is actually
challenged so hugely by Parkinson's DIsease.

Melinda, thank you for writing all of us.

>
>Thank you.
>Melinda Brown
>NPF PR
>

^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
 Ivan Suzman        49/39/36       [log in to unmask]   :-)
 Portland, Maine    land of lighthouses        34   deg. F   :-)
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