^^^^^^GREETINGS  FROM^^^^^^^^^^
Ivan Suzman  47/10   [log in to unmask]
Portland, Maine   land of lighthouses  48   deg. F continued magnificent
fall colors
***********************************************************


Dear LIstfriends,


     I am writing in response to the NPF's official letter on the subject
of my abandoned appointment.

    After 2 and 1/2 years, the NPF in Miami  has finally responded ,
through its Public Relations Director, Melinda Brown.  She has sent us  a
message to this List, regarding the $2,200.00 demand for compensation I
am firmly making, because no doctor showed up for my May 17,1995
appointment at its Clinic in Miami, Florida.

    I had made a 3,000 mile, multiple stop, round-trip by airplane,
accompanied by a Certified Nurse's Aide.  The still-unexplained
abandonment occurred despite THREE confirmations its staff had provided
to us at our nearby hotel room.

      Please accept my apology for the slight delay in responding to the
NPF, Ms. Brown and the Listmembers worldwide.  I found her message to us
shortly after returning home,  when I got up from a nap and turned the
computer on.

       I had been away for the weekend, with a personal care attendant on

24-hour duty, for a sorely needed rest, at a United Church of Christ
lodge and retreat center.

        Unfortunately, Ms. Brown's response extends my battle further,
and refuses to acknowledge any responsibility for payment to me..
However, it does admit and disclose, whether fairly or not, that a
secretary employed in the NPF building was supposedly guilty of a
scheduling error. The NPF seems to blame her for my ordeal.

    Ms. Brown's letter to us provides a number of statements and
assertions which I address below, in sequence, extracted from her letter
to us.

    I continue to seek compensation from the NPF for only $2,200.   I am
firmly asking for that amount to  recover the full cost of having sent an
around-the-clock Certified Nurse's Aide and myself from Maine to Miami.
The $2,200 in expenses covers only the two nights and three days needed
for purely the  NPF-related portion of the multi-purpose trip that was
taken by the two of us.

    I  note that the stance the NPF now takes does not seem to recognize
the time, expenses and energy I have had to devote since 1995 to pursuing
what, for a multi-million dollar organization, is a tiny amount of money
to reimburse.

    I add that I am meanwhile a tired, severely-disabled younger PWP. At
age 47, I am  living from month to month, uncertainly, on $664.00/month
of social security.  I am  not asking for  full compensation.  I do
believe that my request for $2,200.00 is very, very modest, and extremely
reasonable.


    Ms. Brown's statements are excerpted and quoted here, along with my
responses.


On Fri, 17 Oct 1997 17:03:33 -0400 Melinda Brown
<[log in to unmask]> writes:
   1) >I must state that the National Parkinson Foundation does not have
paid physicians on it's staff.

   MY   RESPONSE:      My appointment was set up by NPF staff, confirmed
twice by Mr. Pearson of the NPF staff, as well as once by the clinic
secretarial pool.  It would have taken place in the NPF building had any
doctor been available. None were.

  Moreover, at the time of the deserted appointment, Dr. Sanchez-Ramos
was the Editor of the NPF Report magazine.   This leaves almost anyone
the impression, coupled with scheduled appointments he has in the NPF
building, that he is ,at the very LEAST, an NPF employee!!  Noone had
told me otherwise.

      I question whether any PWP would have even considered whether
Dr.Juan Sanchez-Ramos's association with the University of Miami or with
Jackson Hospital, which I did not know about, is really the issue here..
Until 18 months after the May, 1995 trip, noone, including the doctor
himself, ever told me that he wasn't on the NPF staff.  It sure looked
like it to me, the CNA with me,  and the medicaid-funded personal care
attendants back home in Maine.

     So to try to shift the blame to the Univ. of Miami, or Jackson
Hospital,   neither of which had ever telephoned or contacted me, is
unfair to the University, to the Hospital and to me. It was the NPF which
offered, handled and confirmed my appointment.


-- Melinda Brown writes: > Dr. Sanchez-Ramos' secretary who made the
scheduling error was a UM employee.

MY RESPONSE:
      Again, I had no way of knowing this.  The point is, both the two
clinic secretaries who confirmed on Monday, May 16, 1995,  my appointment
at the NPF clinic scheduled for the next day, and the administrator (Mr.
Pearson) who re-confirmed it on Tuesday, May 17, and who, in that
re-confirmation call, asked if I could  shift our preceding 11 AM
appointment to tour the NPF research faciliies  to 1PM,  and who later
re-confirmed again, assured us that Dr. Sanchez-Ramos was ready to see me
for about 90 minutes, at 2PM, never mentioning the University of Miami.

       So why shift the blame to a University to which I never spoke.
And I will comment on the  alleged "secretary who made the error"  below.


--- Melinda Brown writes:        > It was unfortunate that he could not
have waited the
>2.5 >hours that it took for Dr. Ramos to get back to the building and
that >he
>had to miss out on seeing him.

 MY RESPONSE:      The decision to leave the clinic was made among Mr.
Pearson of the NPF, my CNA and myself.  Quite to the contrary to the
above suggestion, I did NOT make any decision alone!

       Mr. Pearson told us that  Dr. Sanchez-Ramos had supposedly NOT yet
 been located when my CNA and I left  the parking lot of the NPF, at
about 3:25, 1 and 1/2hours after the 2 PM appointment.

  Mr. Pearson escorted us outside to the sidewalk, saying that "perhaps
I'll see the doctor walking down the sidewalk from the hospital!"

   Can any Listmembers IMAGINE the anger and disgust I was feeling??  My
CNA told  me at that time that he was "totally disgusted with the NPF!"

  It had been left to the  NPF clinic secretaries and Mr. Pearson to make
calls to the hospital.  I wondered if the NPF has asked Dr. Sanchez-Ramos
to see hospital patients that he could write about in the NPF report,
instead of keeping appointments for new patients like myself.

  My CNA and I both wondered painfully why a multi-million dollar
Parkinson's Foundation wouldn't be organized enough to DEFINITELY inform
me where Dr. Sanchez-Ramos was.  They certainly knew that we had
travelled 1500 miles from Maine.  I had talked to their offices at least
fifteen times, before  deciding to invest in going to Miami.

  Finally, the NPF secretaries, who had  earlier SHOWN Mr. Pearson, the
CNA and myself the printed schedule of afternoon appointments, including
mine at 2:00 PM,  seemed to have indicated, according to Mr. Pearson,
that  the clinic may have cancelled Dr. Sanchez-Ramos schedule
Sanchez-Ramos FOR THE REST OF THE DAY..

    That is QUITE different from my being blamed for not having the
patience to wait 2.5 hours, 'til 4:30.  There was NO promise of an
appointment at 4:30, just conjecture!

      Ms. Brown may have been told  by NPF officials that Dr.
Sanchez-Ramos returned at 4:30 to the NPF building.  But as far as I knew
when the CNA and I left, there was only the suggestion that Dr.
Sanchez-Ramos "might" be at Jackson Hospital, according to Mr. Pearson.


--- Melinda Brown writes:
>(Let me make this clear - Had Mr. Suzman waited, he WOULD have seen >the
>DR., BUT he CHOSE to leave because he had dinner plans with his
>father.)

MY RESPONSE:

    Even if I had waited, and even if the doctor purportedly showed up at
4:30, I would have  been finished at perhaps 6:00 -  6:15 or later.  And
if he really showed up at 5 or 5:30, maybe at 7:00,  I might have been
finished seeing him, long after the clinic and the building was shut
down, and with only security guards around, and in a late afternoon state
when I normally need to sleep!

    Weighing against waiting three hours for a doctor whose whereabouts
were unexplained were factors such as:

     a).  A  dinner appointment with my ailing dad and step-mom, at 6:00
in Palm Beach, 90 minutes drive north in rush-hour traffic;

      b)   Torrential thundershowers and blinding road conditions, in an
area unfamiliar to the CNA and myself, making travel slow and difficult;

      c)   The time needed for me to rest before being picked up by my
parents to go to eat;

       d)   Dinner reservations my dad had arranged for the four of us;

       e)   The need for me to be in bed by 8:30 to get up at 4:30 for a
return trip beginning in West Palm Beach Airport at about 8:00 AM  the
following morning;

       f)    My dad's schedule of medications and rest, and mine;

       g)   The time needed to check into a motel  room (the Hawaiian in
Palm Beach), shower, rest, take medications, and get dressed to go to
supper at 6:00;  and to arrange morning departure;

        h)  Time to return a rented car

        i)   Adequate time to discuss the options and arrangements the
NPF doctor suggested regarding long-term medical treatment during the
winter months, if I moved to Florida, includin possible pallidotomy or
other procedures before my dad, who had had both cancer and heart
surgery, was too tired to continue.


--- Melinda Brown writes:
>I hope that Mr. Suzman will be able to stop dwelling on a situation
>that>occurred well over 2 years ago..

MY RESPONSE:

   I am not "dwelling" on the situation.  I am fighting for my money back
for services not provided!!


---Melinda Brown writes:

... we do not feel we are responsible for the scheduling error >made
by>Dr. Ramos's secretary.

MY RESPONSE:

   Your claim that if she (or he) REALLY was at fault remains unproved.
Name the secretary to me.
    The NPF says the secretary allegedly works for the U. of Miami, but I
wonder WHO types his contributions as Editor of the NPF Report.

    Is this secretary therefore an NPF employee, part-time??

   Who pays her for that work??

   And if the University of Miami is REALLY to pay me, why hasn't the
NPF, in order to HELP one of its patients, pushed the University
officials to help me??


---Melinda Brown writes:

>That stated, I do not feel that NPF should deduct valuable money that
>has
>been donated to the Foundation for the purpose of conducting research,
>promoting education and funding therapy treatments, to compensate an
>individual who had a misfortunate happening ...

MY RESPONSE

    How much does the NPF value the trust of the Parkinson's
Listmembers???
I am sure there is a line-item somewhere, or a category, for
reimbursement.  What about, as you say above, "funding therapy
treatments"?


---Melinda Brown writes:

...and that he will start focusing his energy...on positive...

MY RESPONSE

  This obvious attempt to sweep under the table, UNRESOLVED, my petition
to you for  proper restoration of the investment I made in going to the
NPF is what is creating the problem in the first place.

  If the NPF would either pay me back, or exert pressure on the
University of Miami, or
someone whose budget includes discretionary funds to be appropriated for
unusual situations, to pay me, the issue would be OVER.

  I try to be a positive person, and feel absolutely no need to defend
myself against the intimation or allegation that I need to refocus my
energies, as if they were too negative!!

    Let me close by saying to the NPF, in the spirit of positive and
mutual cooperation, that you know I am fully aware of the NPF's role in
helping to find a cure for Parkinson's.  That is precisely why I implore
you to take care of business, so that I won't have to end up feeling
cheated, ignored and abused by the Foundation.

    This is a feeling now shared by a now rapidly-growing body of 1500
-1600 Listmembers.  The longer the NPF draws out the ordeal, the longer
we all suffer.  The NPF has the power to find the money to pay me back,
and should do so as quickly as possible.

    At issue here is not only my own horrific ordeal with the NPF, but
the reputation of the Foundation.

    If I were a PWP elsewhere, reading about Ivan Suzman's plight, I
would reconsider carefully any further plans to be seen at the NPF
clinic.  If I were a donor, I would back off from any contributions.

    I sincerely hope you will convey, Melinda, my anger at the NPF's
unfeeling decision to continue to avoid helping repay me to your
President and to the Chairman of the Board.

    I hope that your next post to the list will reflect a reversed
viewpoint, and a willingness to settle IMMEDIATELY, so that most of all,
I personally can devote my precious energy to the rest of my life, free
of the encumberment the NPF continues to cause.


Ivan M. Suzman, 47/10
Portland, Maine