PARKINSON'S  NEWSLETTER of the Delmarva Chapter, American Parkinson Disease
Association November 1996  -  4049 Oakland School Road  Salisbury, Maryland
21804-
2716  1-410-543-0110

FAX (410)749-1034  e-mail [log in to unmask]
                                        #1 GENE AREA IDENTIFIED
OF GENERAL INTEREST: #2 ELDEPRYL GETS MORE COMPETITION
                                        #3 WHAT SHOULD A CAREGIVER DO?
                                                   CAREGIVER NOTEBOOK
                                        #4 HELPING OTHERS AT END
                                               AUTOPSY
                                                ORGAN DONOR / BRAIN BANK

OF REGIONAL INTEREST: LIBRARY / INFORMATION SOURCES

OF LOCAL INTEREST: NICK NIEBERDING TELLS ABOUT PALLIDOTOMY



PARKINSON GENE AREA IDENTIFIED
There has been a controversy over the past few years as to whether or not
there is a
genetic cause of Parkinson's disease. Thursday, November 14, 1996, an
announcement
was made in a press conference at the National Institutes of Health by Dr.
Mihael H.
Polymeropoulos that a particular gene area on a particular chromosome has
been linked
to the Parkinson's disease found in several generations of a large family
scattered
throughout the United States and Italy. This announcement is the result of
studies made
by Drs. Larry Golbe and Roger Duvoisin of The Robert Wood Johnson Medical=
 School
[formerly Rutgers] in New Brunswick, New Jersey. Dr. Duvoisin presented the
early part of
this study at our Baltimore Symposium in 1992 when he had the idea, but the
knowledge
and research techniques for identifying particular segments of the human
genome had not
progressed far enough to provide demonstrable proof of a genetic link. It is
too early at
this time for us to hurry in to have our DNA tested, but in a few years DNA
testing may
well be a standard part of a physical examination. DNA does not usually
change during a
lifetime, but the technology to read and understand our genetic code is
changing rapidly.
Identifying and understanding a cause of Parkinson's could be the giant step
needed to
enable science to develop a cure rather than a merely temporary relief of
symptoms. Dr.
Duvoisin is now retired from active practice but will stay involved in
Parkinson's research
as Chairman of the A.P.D.A. Medical Advisory Board.

ELDEPRYL GETS MORE COMPETITION
 Now that the patent on Eldepryl has expired, Somerset Pharmaceuticals is
getting more
competition. The October Parkinson's Newsletter mentioned that Lederle had a
selegiline
hydrochloride on the market for less and had enclosed a coupon for sixty
free tablets in an
A.P.D.A. mailing. With the high profit margin which exists in Eldepryl, I
predicted more
competition. Now DuPont Pharma, the seller of Sinemet, has introduced
Carbex, its
generic version of Eldepryl. Until recently Eldepryl was available only as a
tablet. Now it is
available only as a capsule. The Carbex ad reads =FENews for patients who
prefer tablets=FE
and encourages physicians to prescribe Carbex by brand name with =FEDispense=
 as
written=FE or =FEDo not substitute=FE added. With at least three drug houses=
 in
the United
States selling selegiline, price competition should increase. The
effectiveness of Eldepryl as a neuroprotector is still an unsettled issue.
According to the DATATOP study, it was found that patients who were given
Eldepryl soon after diagnosis were able to delay using Sinemet longer than
those who were merely taking a placebo. Many clinicians today
downplay the supposedly neuroprotective benefits and either do not prescribe
Eldepryl or
prescribe it for patients for whom it helps provide symptomatic relief in
conjunction with Sinemet. I have been using Eldepryl since late 1991. Based
upon PET scans made in
1992 and 1996, my Parkinson's has progressed in various parts of my brain
between six
and ninety percent from 1992 to 1996. I have no way of knowing what might=
 have
happened without Eldepryl, but an effective neuroprotector should provide
better results
than that.


WHAT SHOULD A CAREGIVER DO?
 =FEWhen one is sick, two need help.=FE At the October meeting in Berlin,=
 Ms. Paula
Goldberg, R.N., explained the meaning of this quotation when she talked
about the roles a caregiver should fill in the life of the patient and in
his or her own life. There are positives to caregiving, such as increased
closeness and better communication between the patient and the caregiver.
Ms. Goldberg gave hints to eliminate as many negatives as possible. To
prevent caregiver burnout, you should know yourself. Don't compare yourself
to others; others may look like saints to you, but they have shortcomings
too, even if they don't show. Instead take talents from your past life and
apply them to caregiving. Decide what absolutely must be done, and assign
priorities, avoiding busy work. Learn to say no.  Subdivide tasks into 15
minute sections, and keep a victory list of what you've
accomplished. Reward yourself. Be sure to take real, uninterrupted breaks.
Do something
you enjoy that is unrelated to your caregiving routine. Humor and exercise
are two coping mechanisms that are helpful for both you and your patient. To
provide the best care for your patient and yourself, you will need outside
support. That support can be met by family, friends, and professionals. Make
your situation clear to family and friends, get a community resources list,
join a support group, and be sure to keep your doctor and his staff
informed. Ms. Goldberg spoke from her experience as Nurse Coordinator,
Parkinson Disease Clinic, Johns Hopkins Outpatient Center, and we are
grateful for her expert knowledge. You can contact Ms. Goldberg at the
American Parkinson Disease Association Information and Referral Center at
Johns Hopkins Outpatient Center (410) 955-8795.

CAREGIVER'S EXAMPLE
 Our own Mrs. Josie Taylor was kind enough to share with us her method for
giving
instructions to those who assisted her in caregiving. Josie has prepared a
notebook which gives specific instructions for care of her patient in
categories such as time and amount of medications, what to do in event of an
emergency, timing for his daily routine, menus, and even a shopping list of
his favorite approved foods by brand and supermarket. She includes a daily
log and charts that she has developed to record pertinent medical and other
information suitable to take to doctors' appointments. It took Josie quite a
bit of time to develop and write her patient notebook, but both she and her
patient can feel more secure knowing that consistent care can be provided
even if she is someplace else. Thank you, Josie, for sharing your
caregivers' notebook with us.


HELP FOR OTHERS WHEN YOUR TIME HAS COME
 THOUGHTS ON AUTOPSY (Adapted from an article in The Synapse, The Newsletter=
 of
the American Parkinson Disease Association Information and Referral Center
of Virginia,
Fall, 1996 issue by H. Robert Brashear, M.D., Department of Neurology,
University of
Virginia Health Sciences Center)
An autopsy is a post-mortem medical procedure that involves careful
examination of
tissues using specialized techniques. The word =FEautopsy=FE comes from the
Greek root
meaning to =FEsee for one's self,=FE and the use of autopsy  to study=
 disease
began as early
as 200 B.C. There are many benefits to autopsy, and the information that is
obtained is
invaluable to families, clinicians, and researchers. Despite its importance,
the rate of
autopsies has dropped to less than 15 percent. The subject of autopsy may
seem an
uncomfort- able one to bring up in conversations among patient, family, and
physician.
Because many find it difficult to talk about, planning an autopsy is rarely
pre-arranged and is most often dealt with in the difficult hours just after
someone has died. This is
regrettable because information obtained from an autopsy can be extremely
important in
providing final answers to difficult questions about diagnosis and illness.
On the other
hand, some patients and families want to discuss the issue of autopsy well
before the time of death. These individuals are most often interested in
getting a confirmed diagnosis. A number of neurodegenerative diseases such
as Parkinson's and Alzheimer's can only be definitely diagnosed by autopsy.
Further research indicates that a number of
neurodegenerative illnesses may be inherited. Therefore, obtaining a
confirmed diagnosis
becomes very important to surviving family members. Despite amazing advances=
 in
diagnostic methods, in as many as 25% of cases, the diagnosis made at=
 autopsy is
different from the clinical diagnosis that was made prior to death. In
addition to providing an accurate diagnosis, information obtained from
autopsy can help clinicians and researchers to better understand disease
processes, learn new medical information, and assess new technologies more
effectively. Patients and families who are interested in prearranging
autopsy can find out how to do so by contacting a hospital, a pathologist, a
medical school, or, in some cases, a funeral home. In some states the
patient or a close family member may fill out papers requesting that an
autopsy be performed at the time of death. This is called a premortem
consent, and it is reconfirmed at the time of death. For some, the high cost
of an autopsy (over $2,000) can be a deterrent. However, in most cases there
is no charge for the procedure because the results help to educate doctors
on better ways to diagnose and treat patients, and the autopsy is a means of
improving medical care and advancing science. In some cases, patients with
specific disorders such as Parkinson's and Alzheimer's request that portions
of tissue obtained at autopsy be donated for specific areas of scientific
study. Several medical centers have developed special autopsy and brain
donation programs in order to carry out specific research programs. Although
there is no cure for neurological disorders such as Parkinson's and
Alzheimer's, scientists continue to conduct research for clues that may be
hidden in brain and nervous system tissue. Important pathological data are
collected from brain tissue obtained at autopsy, and portions of the tissue
can be stored or =FEbanked=FE to be studied as new technological and=
 research
advances occur. Our understanding of the disorders of the central nervous
system has progressed significantly in the past few years, due in part to
the knowledge gained from autopsies. Despite these advances, millions
continue to suffer from incurable neurological disorders. The causes of
Parkinson's and Alzheimer's
remain a mystery. Improved treatments, prevention, and ultimately a cure for
these
disorders depend upon uncovering clues hidden in brain and nervous system
tissue.
Deciding whether or not to have an autopsy is a personal decision. It is
difficult to make, but given its importance in confirming diagnosis and
providing other useful information, an autopsy is something patients and
families should consider.

BRAIN BANKS AND ORGAN DONATIONS
 With the advance in searching the human genome for the genetic cause of
Parkinson's,
there may be an increasing need for brain tissue of people who had
Parkinson's. We are
not sure that Parkinson's is only one disease. There could well be many
subdivisions of
what today is lumped into the general category known as idiopathic
Parkinson's. As we all know, each of us has a similar but different set of
symptoms. Brain banks can provide answers to help those who come after us.
There is also a shortage of organs for
transplanting into people who need help now. Last week the shortage of donor
livers
prompted authorities to announce that potential recipients with chronic
liver disease who had expected to receive a long awaited transplant were
being put at the end of the waiting list in order to make more organs
available to those with the greatest probability of a successful and long
lasting transplant. There is need for eyes, kidneys, hearts, livers, and
even lungs.  Not everyone can be a donor, but everyone can make an offer
when the time comes.


PARKINSON'S BOOKS AND INFORMATION
 There are many sources of information about Parkinson's disease available
either free or at very low cost. On the Delmarva peninsula, just about every
public library has something for us. The Wicomico County Library in
Salisbury has about eight books dealing primarily with Parkinson's; several
more books on neurology which include information on
Parkinson's; several booklets, newspaper clippings, and newsletters about
Parkinson's in
the reference department's vertical file [ask the reference librarian to see
the file];
periodical indexes to most magazines which may have Parkinson's articles;
magazines;
access to other books and journals through inter-library loan at low cost;
and in-library access to the Internet and the World Wide Web, which have
many Parkinson's related sites. Wicomico County Library is adding Internet
and World Wide Web access at Joseph House Village and in Bivalve. As
Maryland residents, we can use the Salisbury State University and University
of Maryland- Eastern Shore libraries. Although we live in a predominately
rural area, the information age is here for us to use.

MEETING TUESDAY NOVEMBER 26 AT 1:00 ASBURY UNITED METHODIST IN
SALISBURY NICK NIEBERDING TO DESCRIBE PALLIDOTOMY
 Mr. Nick Nieberding, a recent recipient of a pallidotomy at Johns Hopkins
University
Hospital, will tell us what it is like to have the surgery and how he feels
about the benefits of the operation. Unlike most operations, the pallidotomy
requires the patient to be awake and alert during the operation to help
guide the surgeon into the precise area to be zapped. A very small miss in
the target area can be a disaster, so extreme precision is imperative. Nick
and Gloria [his wife] work together at Ponzetti's Pizza on North Salisbury
Boulevard. Restauranteurs have a particular problem with Parkinson's since
loss of smell is common with this disease. According to a recent article in
the British medical journal Lancet, one of the most often lost or deficient
odors for Parkinson's patients is the smell of pizza. Nick is practically
never at a loss for words. We should have an interesting, fun, and
informative meeting. Asbury United Methodist Church is located on the corner
of Camden Avenue and Dogwood Road just south of the Salisbury State
University campus. Coming from Salisbury on Business 13S, pass Salisbury
State University. Turn right onto Dogwood Road just before the General Tire
Store. The church and large parking lot will be on your left. Enter the
church's door furthest from Salisbury State University and nearest Camden
Avenue. We meet in the church parlor.

THERE WILL BE NO MEETING IN DECEMBER

NELLIE TAYLOR
 Mrs. Nellie Taylor, who often came to our support group meetings with Bob
and Kathleen
Holland, died November 4 at Peninsula Regional Medical Center Hospital,
following a fall
at her home in Berlin. We will miss her.

DISCLAIMER[in 6 point type]
 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. If at first you do not succeed,
don't try sky diving.

-- Happy Holidays --

Will Johnston


504 HARD COPIES SENT BY SNAIL MAIL ON TUESDAY, NOV 19, 1996
WILL JOHNSTON   4049 OAKLAND SCHOOL ROAD
                SALISBURY, MD 21804-2716
                410-543-0110
Pres A.P.D.A.  DelMarVa Chapter