^^^^^^GREETINGS FROM^^^^^^^^^^
Ivan Suzman 47/10 [log in to unmask]
Portland, Maine land of lighthouses 65 deg. F foggy and mild
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Hi Fatta,
Below is the post you want on the NPF's abuse. I am hoping PWP
pressure as a COMMUNITY would avoid a draining legal avenue of attack on
the NPF and its Dr. Sanchez-Ramos.
I AM VERY EXHAUSTED at the moment, with meds and the NADH enzyme not
preventing freeze-ups and excruciating muscle cramps. Permax, Parlodel
and Mirapex are ALL unusable in my body. I get horrible side-effects,
including dangerously low blood pressure and total intestinal blockage.
I don't think I have the strength, the money or the time to fight a
legal battle alone, especially from a distance of 1500 miles (Maine to
Miami).
. I would feel much better if the Listmembers would start a letter and
phone campaign to force the NPF to act to restore the $3400 I am
claiming.
The NPF's phone number is 1-800-327-4545 in the U.S.
Sincerely,
IVAN
Sent: Friday, September 05, 1997 5:35 AM
To: Multiple recipients of list PARKINSN
Subject: Dear Friends, please help...
Dear World Listfriends,
I am in great pain as I write this letter to all of you. What you are
about to read is not what I visualized I would ever have to write you
about.
Every time I turn on my computer to get my e-mail, and see among the
many wonderful messages, the informative and encouraging posts by Larry
Hoffheimer, who is not only a list member, but also the National
Parkinson's Foundation's Counsel, a Udall Bill star proponent, and a
top-notch Muhammad Ali promoter, a wrenching, deep, painful, wound
stabs and stabs at me. This happened to me again about an hour ago.
Like any person living with Young Onset Parkinson's Disease, I want
to feel hopeful and encouraged by Mr. Hoffheimer's energetic work, but
instead I feel jaded, disheartened, used and abused, and my stomach ties
up in knots.
I am going to pour out my guts to you, and tell you what happened.
Maybe somebody can be the healer I need so badly.
Please consider this letter to be an Open Appeal to all list members
who have time, to PLEASE help me close a TERRIBLY painful wound.
.
I need YOU to help, because, I feel that we are a Caring Community of
Support, unlike any other. Somewhere there is a list member who has the
answer, the resources, the ideas, the contacts, the negotiating skills.
In May of 1995, after 4 months of detailed preparations, I was
thrilled, because I had saved and borrowed $3400.00. I could finally
travel to Florida with a hired Certified Nurse's Aide, for an appointment
with a FAMOUS neurologist at the reknowned National Parkinson's
Foundation Clinic in Miami.
My dream of getting help from a world-famous clinic dominated a
happy, but cautiously undertaken, plane ride to Florida. The two of us
first spent a week on the beaches, resting from the exhausting Maine
winter, and then, both somewhat restored, drove to Miami and registered
at the Day's Inn, near the NPF office and laboratory complex. We began to
make the final preparations to see the NPF's doctors.
During,the soothing, warm evening in Miami, the CNA (Arthur
Lemieux) and I reviewed, refined and re-defined my many questions for
the young neurologist. Both of us hoped this appointment would
dramtically improve our handling of my symptoms, and our understanding of
Parkinson's. I planned to share our Florida experience with my friends
in the Greater Portland Parkinson's Disease Support Group, which I had
founded two years earlier, in the spring of 1993.
TO our absolute HORROR, when we presented ourselves at the appointed
time, 2:00 PM, the doctor was NOWHERE to be found ( Juan Sanchez-
Ramos). He is the NPF magazine editor, and one of five doctors at the NPF
clinic.
I have never recovered from the shock I experienced at that moment.
The NPF staff had set up my appointment, and had confirmed it just
hours before, by phoning our room at the Day's Inn. No one ever told me
why the clinic doctor was not present for my 2:00 PM appointment, or why
the NPF had no covering or substitute doctor available to see me. They
BUNGLED my plans, and I am still suffering the consequences.
Mr. Hoffheimer eventually wrote me, in his official role as NPF
counsel in Washington DC, to say it was NOT the NPF's responsibility to
refund me the $3400.00 I had to spend on two round-trip flights from
Maine ( about 6,000 air miles), hotel costs for two nights, and three
days' transportation, food, and other basic traveling expenses, plus Mr.
Lemieux's fees.
Larry's letter killed any hope of restoring me the $3400.00 I had
spent. I didn't realize that I was being discarded and buried. But now I
RISE to ask again for help. I think many listmembers know me now, and my
dear cyberfriends, somehow, I think you can answer.
I had to go back to Maine with my Certified Nurses' Aide immediately
after the scheduled, but unfulfilled appointment. The airplane tickets
were not transferrable to other flights, and Mr. Lemieux (my CNA), who
had been given permission to go on temporary leave to travel with me, had
to be back in Maine at work at the Nursing Agency that employed him to
care for me and other patients.
Much of the money was borrowed. Because I live from one month to the
next on Social Security, which is $664.00 per month, and charity, I have
suffered a devastating loss.
Every time I see "National Parkinson's Foundation" I feel like
throwing up
and I get depressed. I do not want to feel this way, but I can't stop
the pain.
Mr. Hoffheimer, NPF staff, and fellow PWP's and caregivers, would
you PLEASE help me resolve my horrible loss. Two and a half years of pain
is eating at me. Enough is enough!
Painfully,
Ivan Suzman 47/10
--------- End forwarded message ----------
