PARKINSON'S  NEWSLETTER of the Delmarva Chapter,
 American Parkinson Disease Association
January  1997
 4049 Oakland School Road  Salisbury, Maryland 21804-2716  1-410-543-0110
FAX (410)749-1034   e-mail [log in to unmask]

--516 hard copies by snail mail 7 January 1997--

OF GENERAL INTEREST: Walther Birkmayer's death
                     Nick Nieberding on pallidotomy
                     Sinemet CR or not CR
                     Federal funding of Parkinson's research
OF LOCAL INTEREST:   Meeting January 28 in Berlin, Maryland
                     Obituary Dorothy Crosley
                     Memorials

DR.WALTHER BIRKMAYER - PD RESEARCH PIONEER

Professor Walther Birkmayer died in Vienna,
Austria, December 10, 1996, at the age of 86.
Dr. Birkmayer was perhaps the greatest
contributor to clinical Parkinson's disease
research to date.
He was the first physician to use levodopa [the
active ingredient in Sinemet] on Parkinson's
patients. At that time levodopa was very
expensive to produce. It was inefficient because
the benefits of the blocking agent carbidopa had
not been discovered, and the side effects of the
massive doses required were almost unacceptable.
In 1973 Dr. Birkmayer was the first to use
Selegiline (known to us as Eldepryl or Deprenyl)
for the treatment of Parkinson's.
Birkmayer was the author or co-author of about
four hundred scientific articles and more than
twelve books. He maintained his clinical practice
in Austria and travelled extensively to treat world
leaders who had Parkinson's.
Little was known of his very early practice until
relatively recently. In the early middle 1990's
Nazi records disclosed that he was a second
lieutenant in the German S.S., the infamous
Gestapo of World War II. This clouded his
professional successes despite the fact that before
we entered the war he was dismissed from the
S.S. when the Nazi government discovered that
he was part Jewish himself. It is unfortunate that,
in the minds of several in the neurologic medicine
industry, early guilt by association in his youth
carried over to discredit his humanitarian service
to millions worldwide. We in the Parkinson
community are grateful for his contributions.


NICK NIEBERDING ON PALLIDOTOMY

At our November meeting Nick told us about his
experience as a pallidotomy patient at Johns
Hopkins. Nick related to us his feelings of
uncertainty prior to the operation. Brain surgery
is not something to be taken lightly. A  visit to
his room in the hospital well before the operation
by Dr. Fred Lenz, the neurosurgeon, helped to
allay fears. Dr. Lenz explained what he was
going to do and told Nick more of what to
expect.

I lay in my room feeling alone and scared--
Maybe like an astronaut on that hot August day...
                   And Away We Go!

Soon a scorching sun will "stare-down"
good ole Baltimore as she sweats
through just another summer's day.

The tall Hopkins building I watch from
points high above the shimmering heat
like a rocket ship ready to "get outta here!"

Count-down begins at 10 when my heart
will pound down the ever-so-slow
descending seconds of Parkinson's disease.

I want this!
All of it!
Pow!  To the Moon, Alice!
To  the Moon--where I'll jump high
over this hell called Parkinson's!
                       Nick Nieberding
                 (just before surgery)

Before the actual operation, a stereotactic crown
[best described as a bird cage] was placed on
Nick's head, firmly and uncomfortably anchored
with screws to Nick's skull to provide reference
points for the transition from a CT scan to the
operating table. The operating instruments
including a Black & Decker hand drill were
nearby. He was pushed out of =FEHopkins
Hardware=FE to one of the best neurosurgical rooms
in the world. This scared him. The operating
room was more crowded than Nick expected.
Johns Hopkins is a teaching hospital, and he was
a major part of the lesson for the day. There was
some delay since Dr. Lenz had a longer than
anticipated surgery to perform prior to Nick's.
The pace of the operation was slow, careful, and
deliberate. Discussions (described by the patient
as arguments) among the assistants were frequent.
A frustrated timorous female voice with an
Oriental accent just outside his field of vision
announced that she could not turn it. Nick had no
idea what "it" was. A surprised male voice asked
if she had ever done "it" before, and she said she
hadn't. Then she triumphantly announced that she
got "it."  Dr. Lenz was always in total control as
both surgeon and as teacher. I heard my heart
beating loudly =FE echoing through the chill of the
chamber  "like a big clock late at night. Wind it,
Doc " Wind it! They were trying desperately to
find the over-active area so they could "Zap" it.
They found it! "There," cried Dr. Lenz. "Yes,"
cried the intern. "Help!" cried Nick. Suddenly all
was quiet. It was "Zap time"! This was it. Bottom
of the 9th, two out. Lenz up! Finally his last call
"Very good."
After what seemed like a very long while, the
operation was completed and Nick was wheeled
to the recovery room, returning with the
exhausted hand of a Hopkins genius resting on my
shoulder and a smile I'd lost 6 years before on
my face.
Late that night Nick had a visitor. Dr. Lenz, in
spite of many hours that day in the operating
room, was there to check on him. It made
Hopkins seem like a very caring hospital.
Nick's family said he looked younger. The
operation was a success but not a miracle. Nick
still has to take his Parkinson's medicines, and he
has days that are not as good as other days. But
the invisible ropes and chains that bound him
before are gone. Life is enjoyable and really
worth living again.
At the end of his presentation he was asked if he
would go through it again. He let it be known
that he did not like having the =FEbird cage=FE on his
head, but he would do it.
Now he has to go back to worrying over the extra
few pounds that result from a returned sense of
taste and working in a pizza restaurant.

SINEMET CR or NOT CR
The Sinemet CR FIRST (Five-year International
Response Fluctuation STudy) multi-center report
supported the usefulness of the sustained-release
product in long term treatment of Parkinson's
disease.
In the study which compared the standard Sinemet
to the CR version, it was found that at the end of
five years, motor fluctuations occurred at about
an equal rate, in about 21% of both the CR and
non-CR patient groups. [This rate is substantially
lower than previous studies which suggest about
50% of patients will develop motor fluctuations
after 5 years on Sinemet therapy. This change
may indicate earlier diagnosis, better dosing by
neurologists, or a shift in interpretation of the
United Parkinson's Disease Rating Scale.]
It was found that Parkinson's patients using
Sinemet CR required fewer doses per day to
manage their symptoms than patients using
standard (immediate release) Sinemet. [The
amount of medication active ingredient (levodopa)
required is substantially greater in the CR form of
Sinemet.] The practical benefit of the CR form
here is the ease and convenience of taking fewer
doses per day. Patients switching to the CR form
may notice a delay in the effect of up to one hour
after the first morning dose.
In the CR FIRST study, patients receiving
Sinemet CR scored generally higher on the scale
of =FEactivities of daily living=FE than patients on
standard Sinemet. The difference was statistically
significant, but in an individual patient the
improvement may or may not be perceived.
=FEActivities of daily living=FE include speech,
salivation, swallowing, handwriting, cutting food,
handling utensils, dressing, hygiene, turning in
bed, adjusting bed clothes, falling, freezing while
walking, walking, tremor, and sensory complaints
related to Parkinsonism. The study confirmed that
either form of Sinemet can be useful in treating
the symptoms of Parkinson's disease. There were
no significant differences in the rate of specific
side effects such as nausea, dizziness, insomnia,
or depression. Certain medications may interact
with either Sinemet. The study also confirms the
benefit  to patients of early Sinemet therapy.
Although neither form of Sinemet is a cure, and
neither stops the progression of the disease,
Sinemet in one form or the other is by far the
most effective  medication we have today for
treating the symptoms of Parkinson's.
Sinemet CR is a sustained-release (not controlled-
release as one might guess from the CR name)
form of the standard Sinemet with its active
ingredients held in a medium that is more slowly
dissolved, gradually releasing medicine into the
bloodstream and causing less variation in plasma
levodopa levels.
Sinemet CR is more expensive than the standard
(immediate release) Sinemet on a per unit of
medication basis, and more CR is required than is
the case with standard Sinemet. Standard Sinemet
is now available in generic form, making the
price differential even greater if one compares
brand-name Sinemet CR to the generic standard
Sinemet. Until recently Maryland Blue Cross/Blue
Shield prescription drug plans required the patient
to pay only the per prescription co-pay and did
not require the patient to pay the co-pay per
prescription plus the difference between brand-
name standard Sinemet and its generic equivalent.
If a patient wishes to stay with brand-name
Sinemet, the out-of-pocket cost to a prescription
card holder for standard Sinemet will be higher
than the out-of-pocket cost of Sinemet CR.
Sinemet CR is still protected by patent and
therefore there is no generic equivalent.
Which is better for you? Different people respond
differently to different drug delivery systems. The
active ingredients are the same. I am committed
to using the standard Sinemet for the duration of
the Entacapone drug study I am in.
There are also different strengths of Sinemet
available: 10/100, 25/100, 25/250 in the standard
Sinemet and 25/100 and 50/200 in the CR. All
tablets are scored to make it easy to break them
in half, effectively almost doubling the choices.
Which should you use? Standard? CR? CR with
a standard boost in the morning? The choice is up
to you and your physician.

This was largely adapted from an article in the
2nd Quarter, 1966 Parkinson Report published by
the National Parkinson Foundation.

FEDERAL FUNDING OF PARKINSON'S RESEARCH

The United States government is by far the
greatest source of funds for medical research
dollars used in the search for the cure for
Parkinson's disease. It is also the greatest source
of funds for medical research on practically every
other disease known or unknown to man. The
amount we raise nationwide with our Walk-A-
Thons and other activities is important but a mere
=FEdrop in the bucket=FE compared to federal
spending for research.
At the present time, Parkinson's disease research
is substantially under-funded by the federal
government compared to most other diseases.
Parkinson's is perhaps less deserving of medical
research dollars than AIDS, cancer, heart disease,
etc., since Parkinson's is not immediately life
threatening, is not contagious, and has its greatest
incidence among people at or near retirement age.
=FELess deserving=FE is a relative term. Spending ten
or twenty times as much per AIDS patient than
per Parkinson's patient may be logical, but over
$1,000 per AIDS patient compared to about $26
per Parkinson's patient is too much difference.
We do not recommend reducing other medical
research where it is needed. We want to increase
research for the benefit of all.
The new congress will be getting under way
shortly. The Udall bill in the last congress passed
the Senate but never reached the floor of the
House. It is about time to begin our campaign
again. Our efforts have produced extra
Parkinson's federal research dollars but far less
than would have been provided by the Udall/NIH
Revitalization Act.


WORCESTER CO. COMM. ON AGING PROGRAM
Mrs. Marty Yates of the Worcester County
Commission on Aging will be the featured
speaker at our January meeting at the Atlantic
General Hospital in Berlin.
The various counties in our part of the Eastern
Shore offer several programs designed to be of
help to those who want or require assistance as a
result of physical or cognitive impairment. The
Worcester Commission on Aging provides
support and counselling, not only to those who
have the impairment, but also to caregivers.
The commission has focused on the problems
associated with Alzheimer's, but there are some
areas where they can be of use to the Parkinson's
community. These services to be described by
Ms. Yates are available only to Worcester County
residents, but there are similar programs available
in surrounding counties.
After her presentation we will have a relatively
short support group meeting to catch up on the
latest news about Parkinson's medical research,
the status of federal funding for relevant research
with the failure of the N.I.H. Revitalization Act
[including the Udall Bill] to reach the floor of the
House of Representatives in spite of a unanimous
vote for passage by the full Senate and co-
sponsorship by a majority of the House members,
and other regional or national happenings
concerning the Parkinson community.
Atlantic General Hospital is located east of Route
113 off the first intersection south of Route 50.
We meet in the hospital's conference room on the
first floor just before the cafeteria.

DOROTHY CROSLEY
Mrs. Dorothy R. Crosley died at her home
following a fall several months ago which was not
thought to involve serious head injury. Much later
it was discovered that she had internal bleeding
and infection under the bruises she had from the
fall. She spent several weeks in Peninsula
Regional Medical Center Hospital and for a while
seemed to be slowly recovering. While in the
hospital she developed pneumonia. The=7F
combination of internal head injury with
infection, pneumonia, and Parkinson's was too
much.
She and her husband George were at almost every
support group meeting over the past couple of
years. Several memorial donations to the support
group have been made by her friends. This
month's Parkinson's Newsletter is issued in her
memory. We will miss Dorothy.

MEMORIALS RECEIVED
Memorials in memory of Mrs. Nellie Taylor
have been given by Robert Taylor Construction
Company, Shirley Whitman, June Smith, Debra
Taylor, and James C. Church.
Memorials in memory of Mrs. Dorothy Crosley
have been given by Loran J. Robertson, Mr. and
Ms. Burnley Wilder, and Miriam F. Greenhalgh.
A memorial in memory of Domnic Citrano has
been given by Mrs. Frances Citrano.
Undirected contributions were received from Mr.
and Mrs. Barney Frank, Mr. and Mrs. Bryan
Roberts, and Dr. Peter Lamb.
Donations made to the support group will be used
to pay support group expenses. We are a non-
profit charitable organization recognized by the
State of Maryland and the Internal Revenue
Service. All labor is volunteer. Donations in
excess of support group needs are forwarded to
our national organization and used primarily for
medical research. The chapter/support group has
no membership dues.

DISCLAIMER
At the suggestion of the APDA Director of Chapter Operations:
The information and reference material contained herein
concerning research being done in the field of Parkinson's
disease and answers to readers' questions are solely for the
information of the reader. It should not be used for treatment
purposes, but rather for discussion with the patient's own
physician. Feeling stressed? Cheer up! Stressed is just
desserts spelled backwards.

Will Johnston
And here's to long "ons" and short "offs"

WILL JOHNSTON   4049 OAKLAND SCHOOL ROAD
                SALISBURY, MD 21804-2716
                410-543-0110
Pres A.P.D.A.  DelMarVa Chapter