PARKINSON'S  NEWSLETTER of the Delmarva Chapter,
 American Parkinson Disease Association
  November/December 1997 - 4049 Oakland School Road
  Salisbury, Maryland 21804-2716  410-543-0110
=20
FAX (410)749-1034   e-mail [log in to unmask]

MEETING 1 PM, TUESDAY NOVEMBER 18 AT
ATLANTIC GENERAL HOSPITAL IN BERLIN

UDALL BILL ALMOST A
CERTAINTY
The Morris K. Udall Parkinson's Research and
Education Act as an amendment to the
Appropriations Bill for the Departments of Labor,
Health and Human Services, Education, and
Related Agencies passed in the United States
Senate. The house version of the appropriations
bill did not include the specific Parkinson's
funding, but in the Conference Committee, the
Udall Bill was included.
The only hurdle left is President Clinton's
signature to make it law. Mr. Clinton came to
our help in the very early days of his first term,
and I think we can depend upon him to make the
Udall Bill law.
We have lobbied hard for this legislation. Many
people who have Parkinson's disease and their
families and friends spent many hours but
relatively few dollars to get this legislation
passed. All of our senators co-sponsored the
Udall Bill. Congressman Wayne Gilchrest was a
cosponsor almost from the very beginning of our
efforts. We owe our representatives a big =FEThank
you=FE for what they have done for us.
I have not seen the final version approved by the
Conference Committee, but I understand it stands
virtually unchanged from its original wording.
We are talking big money! We will be giving up
the research money we used to get [about $34
million] and instead will get a whopping
$100,000,000.00 which should go a long way
in finding the cause and cure for Parkinson's
disease. The lobbying has also helped us join with
other Parkinson's groups in working toward a
common goal. More on page 4.

NOV. SPEAKER OBSERVED
PIG FETAL IMPLANTS

Mr. Jim Maurer, a member of the Board of
Directors of A.P.D.A. and President of the
Massachusetts Chapter of A.P.D.A., will be our
speaker at the November 18 meeting in Berlin.
Jim has been very active in working with medical
research surgeons in the Boston area and in
Havana, Cuba. His function has been that of a
Parkinson's patient advocate or =FEhand-holder=FE in
the operating room. Although he has Parkinson's
himself, he is very active. He is scheduled to
speak to a newly formed support group in
Rutland, Vermont, on November 13, to attend a
meeting of the A.P.D.A. Board of Directors in
New York on his way south to see us, and to visit
with his brother in Rockville after talking to us.
Human fetal tissue implants have been very
controversial and politically sensitive. The use of
brain tissue from pig embryos is far less
controversial. Cardiac surgeons have been using
pig heart valves to replace human heart valves for
several years, but tissue rejection problems in the
brain are not well researched yet. The pigs used
have been to some degree genetically engineered
with human genes to make the pig tissue more
compatible with human tissue. There have been
several experimental pig to human brain tissue
implants performed, and the initial results are
encouraging.
Directions to Atlantic General Hospital are on
page 4. We will meet in the patient dining room
on the second floor. The meeting should finish
about 2:00 or 2:30 after a question and answer
period and refreshments. If you need
transportation, let me know (410-543-0110).

WALK-A-THON A
FINANCIAL SUCCESS
We have sent A.P.D.A. over $2,000 in Walk-A-
Thon money so far, and money is still coming in.
The money we receive does not go through the
chapter bank account. It goes straight to our
national office to be used for medical research
and education.
The turnout for the walk was miserable. The crisp
October weather expected turned out to be more
like July. I could count the walkers on my
fingers, and have most of one hand left over. We
were competing with Peninsula Regional
Hospital's 100th anniversary party, a cancer fund
raiser a few blocks away, and a beautiful day to
go to the beach. The hospital also had fewer
attend their celebration than expected.
Spring may be a better time for a fund raiser. The
Walk-A-Thon concept has been good, but with
almost every charitable organization having one,
many people may be tired of Walk-A-Thons.
We still have some T-shirts and bags which were
given as premiums. The shirts are good quality
cotton. The bags are large plasticized jute tote
bags with round bamboo handles. The handles
protect fingers from being cut into even if the
load is heavy. The shirts and bags have local
advertising which covered the cost of the
merchandise.

CANDY MACHINES IN
SOMERSET COUNTY
There are some loose candy vending machines in
Somerset County which are providing a small
income to the chapter. The machines are owned
and serviced by Mrs. Lori Goldsborough of
Westover and her husband. Mrs. Goldsborough is
a physical therapist, and Mr. Goldsborough is a
building contractor. Their candy vending machine
route business is just getting started. Some of
their machines benefit us, and others benefit
McCready Hospital. The Goldsboroughs hope to
expand into Wicomico County and will be
looking for sites for their 25-cent candy
machines. The machines' labels state that a
portion of the profits from sales of a particular
machine go to us.
=0CEASTON MEETING WITH
DR. STEPHEN REICH
Dr. Stephen Reich, Director of the Parkinson's
Clinic at Johns Hopkins Hospital, presented his
annual talk on the Eastern Shore at Easton's
Memorial Hospital on October 8. His message
this year was about HOPE.

Honesty and Humor - accept Parkinson's and
don't be embarrassed. Confront it head on and be
light-hearted.
Optimism - be positive about the future.
Emphasize what you can do, not what you can't.
Problem solving and Perseverance - over the
years you have solved many of life's problems.
Parkinson's is another problem to solve. Don't
give up.  You can't be a wimp and cope with
Parkinson's.
Education and Exercise - know the options.
Work with your doctor. Knowledgeable patients
can help their doctors in treatment geared to
individual differences. One of the worst things to
do is to be sedentary. Some form of regular
exercise is necessary to cope with Parkinsons.

Dr. Reich talked about the changes over the past
year. A gene for Parkinson's has been discovered
which may provide a clue for treating all
Parkinson's although most Parkinson's cases are
thought to not be of the heredity kind. Over 120
pallidotomies have been performed at Johns
Hopkins, and as a result more is known about the
operation. Surgical technology has improved, and
patients who can benefit from a pallidotomy or
thalamotomy can be better identified. The chance
of a minor problem as a result of the operations
has been reduced to about 5%, and the chance of
major problems to about 1%. Johns Hopkins has
not yet implanted the deep brain stimulator in
patients to control tremor. Fetal tissue
implantation is still experimental.
There are two new agonist drugs just approved by
the FDA for Parkinson's, Mirapex and Requip.
They will compete with Permax and Parlodel. It
is still too early to know whether or not to switch
to the new non-ergot agonists.
=0CHEALTHSOUTH  HERE
FOR COMMUNITY
HealthSouth Chesapeake Rehabilitation Hospital
representatives Mrs. Patti DuBuque, Director of
Business Development, and Mrs. Julie Johnson,
Director of the Physical Therapy Department,
spoke at our September 23rd meeting in Salisbury
at Asbury United Methodist Church.
Mrs. DuBuque stressed the idea that
HealthSouth's job is to fill community needs.
Physical therapy is available at =FEChesapeake
Rehab=FE on either an in-patient or an out-patient
basis. Maryland is one of the states which does
not require a physician's prescription before
physical therapy can be provided, but most health
insurance companies require that the patient have
orders for physical or occupational therapy from
a doctor before insurance benefits are paid for
physical therapy.
Mrs. Johnson stressed the need for individual
exercise programs for individual patients. She
also stressed that diet is a part of a healthy life
style. Almost all Americans need to eat a diet
lower in fats. For most people protein is
recommended, but for Parkinson people, reduced
protein intake at breakfast and lunch may be
needed to have medications work as they should.
APDA 1998 CALENDARS
AND APDA PINS
The American Parkinson Disease Association has
provided us with 1998 calendars and small APDA
lapel pins. I will have them at the meeting
Tuesday in Berlin.
The calendar is a wall or lay-flat desk calendar
with some room for writing notes or reminders on
each day. The calendar also has a list of I&R
Centers and APDA chapters with phone numbers,
a list of booklets available from APDA, some
helpful hints for easier living, and unobtrusive
=FEThank you's=FE to several drug and medical
equipment manufacturers who have made large
contributions to APDA. We and all other chapters
were invited to have important 1998 chapter
events listed on the calendar. Only one chapter
had an event listed. We can't plan eighteen
months ahead.
=0CCALL THE NEAREST
I&R CENTER FREE
The cost of calling the A.P.D.A. Information and
Referral Center at Johns Hopkins from the
Eastern Shore of Maryland just went down.
SmithKline Beecham Pharmaceuticals,
manufacturer of the just FDA approved agonist
Requip (ropinirole), has provided a toll-free
telephone service which is supposed to connect a
caller to the nearest APDA Information and
Referral Center.
The number is 1-888-400-APDA (1-888-400-
2732).I was the first to call and get the I&R
center at Johns Hopkins. This is fancy telephone
technology and an exercise in geography. As a
test in early October, one of our group called the
number from Chincoteague, Virginia. Virginia
has two APDA I&R Centers, one in
Charlottesville to cover the central and southern
parts of Virginia, and one in Fairfax to cover
northern Virginia. Chincoteague is about as far
north and east as one can get on Virginia's
Eastern Shore, but it is south of Charlottesville.
The closest I&R Center is Johns Hopkins Hospital
in Baltimore, Maryland. Perhaps wisely, the call
from Chincoteague to 1-888-400-APDA rang a
telephone at the APDA national office in Staten
Island, New York.
You will hear no advertisement for Requip or
SmithKline Beecham Pharmaceuticals when using
this number. The call appears to work just like
any other toll-free 800 or 888 number. Thank
you, SmithKline Beecham.
Keep this number in mind and on a piece of paper
in your wallet or purse. If you run into difficulty
while travelling, 1-888-400-APDA could be a
lifesaver!
PAULA GOLDBERG TO
LEAVE HOPKINS I&R
Ms. Paula Goldberg has resigned her position as
Coordinator of the APDA Information and
Referral Center at Johns Hopkins Hospital. Her
resignation date is in early December. Paula has
been an effective counsellor to many in our
group, and we will miss her.=20
=0CMORE BENEFITS FROM
UDALL ACT
Win or lose, the push for the Udall Act has been
good for us. And winning will make it even
better! We have worked together for a common
cause, hoping to accomplish what no single
Parkinson's individual or group could do alone.
We talked to or wrote to our elected officials
asking for their help. At our last meeting we
petitioned Congressman Stenny Hoyer, a
Maryland(not from our district) member of the
Conference Committee, who was not listed as a
co-sponsor, for his help in keeping the Udall Bill
as passed by the Senate in the Appropriations Bill
for the Departments of Labor, Health and Human
Services, Education, and Related Agencies. We
received no formal reply, but I feel that our little
support group may have made a difference in the
final outcome.
This year the governors of Virginia and Maryland
issued proclamations recognizing Parkinson's
disease and proclaiming a certain month as
Parkinson's Disease Awareness Month. Several
other states joined in.
The national organizations joined forces to push
for the Udall Act. APDA and the National
Parkinson Foundation (NPF) both contributed to
the effort by providing staff in Washington,
publicity, and other help. The Parkinson's Action
Network (PAN) was the basic driving force in
formulating and lobbying for the Udall Act, but
it is far too small to accomplish what was done
without help from the major national Parkinson's
organizations. The Parkinson Disease Foundation
(PDF) was an early supporter of the Udall Bill
and supplied financial help when it was needed
most. The United Parkinson Foundation (UPF)
joined in with the PDF in the effort and has now
merged itself into the PDF. Several local
Parkinson's disease groups with no national
affiliations joined in. Many people with
Parkinson's in foreign countries asked over the
Internet what they could do to help. This was a
no lose effort. The few thousand dollars we raised
on the Eastern Shore with our Walk-A-Thons
look awfully small compared to federal funding,
but our few dollars are still important in the
search for the cause and cure for Parkinson's.
=0CDIRECTIONS TO
ATLANTIC GENERAL
>From Salisbury, take US50 east (toward Ocean
City). Do not take Route 90. Go past Berlin's
first two exits. Turn right onto Route 113.
Immediately get into the left lane. Turn left at the
first intersection and Atlantic General is near the
end of the first street on your left.
THERE WILL BE NO
DECEMBER MEETING
Christmas and New Year's are traditionally
family times. Our next meeting and newsletter
will be in January, 1998. We will probably meet
in Salisbury at Asbury Methodist Church.

DISCLAIMER
At the suggestion of the old 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. The end of 1997 is drawing near. Have you gotten
used to writing
=FE1997=FE on your checks? Do you still want to write =FE1996=FE? Are you=
 still in
the eighties?
Get a stiff upper lip and prepare for writing 1998. You will be used to i=
t
by 2000.


Merry Christmas
and
Happy New Year
Will Johnston


















































































































































































=1A

----------
> From: Charlie Huddleston <[log in to unmask]>
> To: Multiple recipients of list PARKINSN <[log in to unmask]
>
> Subject: New Member
> Date: Monday, November 10, 1997 11:24 PM
>=20
> Dear list recipients,
>=20
> My mother was diagnosed about a year ago with Parkinson's. I was a seni=
or
> in college at the time, trying to get in medical school. Thankfully, I
made
> it, and have been, along with trying to keep up with all my studies,
> research about Parkinson's. Mom is still in the eaerly stages, with
little
> or no tremor, and increasing weakness in the right upper extremity.
> Basically, aside from weakness, and incoordination, she's doing well.
> Recently, I found out that acupuncture has beenn used to treat PD, and
was
> wondering if anyone has any specific information or experience with tha=
t
> approach to treatment. Thnks, and may God bless,
>=20
> Charlie Huddleston
> M1
> ETSU James H Quillen College of Medicine
> Johnson City, TN