This is a copy of the text material from the Parkinson's Newsletter of the
Delmarva Chapter, American Parkinson Disease Association. Most references
to memorials have been deleted.
Will Johnston, editor
PARKINSON'S NEWSLETTER
of the Delmarva Chapter, American Parkinson Disease
Association
Nov-Dec 1999 4049 Oakland School Road Salisbury, Maryland
21804-2716 410-543-0110
FAX (410) 543-1378 e-mail
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MEETING TUESDAY NOVEMBER 30 1 p.m.
ASBURY METHODIST CHURCH SALISBURY
U.S. SENATE BUDGET
HEARING ON RESEARCH
On September 28, a U.S. Senate appropriations
committee hearing on a major increase in funding
of medical research for Parkinson's disease as
authorized by the Udall Act was held in
Washington. The audience portion of the room
was packed, and the press and television crews
filled the balcony. Everybody wanted to see and
hear Michael J. Fox of Back to the Future and
Spin City fame present his testimony for
additional P.D. research spending.
Mr. Fox's P.D. was diagnosed several years ago,
and he had a thalamotomy operation to relieve the
tremor which could have ended his acting career
very early. He was able to hide his symptoms for
a while. As his P.D. progressed, he publicly
announced that he has Parkinson's and that he
would work toward finding the cure. In the senate
hearing he was ill at ease in a situation where
there could be no re-takes. His Sinemet had not
kicked in, and it was obvious he was having
difficulty. He told his story as it is and how it is.
Two other people with P.D. testified: Mrs. Joan
Samuelson, president of the Parkinson's Action
Network and the main promoter of the Udall Act,
and Mr. Jim Cordy of Pittsburgh, who is trying
to get our private national P.D. organizations to
work together. We had a joint fund raiser with
the Parkinson's Action Network when Morton
Kondracke (the Daily Times carries many of his
columns) was the main speaker at our dinner at
Salisbury State. Joan and I have been friends
since 1992. Jim Cordy became a Parkinson's
activist as a result of our camaraderie on the
Prodigy Parkinson's bulletin board in the pre-
internet days.
MORE ON THE SENATE
HEARINGS
Dr. J. William Langston, head of the Parkinson's
Institute and author of The Case of the Frozen
Addicts, testified that a cure for Parkinson's
disease may be only four or five years away if
adequate funding is provided for medical
research.
Dr. Gerald Fishbach, Director of the National
Institute of Neurological Disorders and Stroke,
pointed out that there are many research projects
currently being carried out which are brain and
movement disorder related but not directed at any
particular disease. He recognized our concern and
displeasure about the way the National Institutes
of Health has exaggerated the number of dollars
going to Parkinson's disease research by including
research directed toward other diseases _which
incidentally may yield some benefit to people with
Parkinson's disease.
The general tone of the testimony was very
upbeat. All said that P.D. was the most promising
neurological disease to benefit from research, and
that, with adequate funding of research, a cure
would probably be found soon. There was
concern about the prohibition of federal funding
for stem cell research resulting from protest by
the anti-abortion lobby, but Senator Arlen Specter
said he had been assured by Senator Trent Lott
that the problem would be reconsidered in the
spring when there would be time for full hearings
on that particular part of spending legislation.
There were only three senators present at the
hearing. Senator Arlen Specter of Pennsylvania
was there as chairman, Senator Thad Cochran of
Mississippi was there as a committee member and
was instrumental in setting up the hearing, and
Senator Paul Wellstone of Minnesota was there as
a friend of the Parkinson's movement. Some
observers expressed disappointment that there
were so few senators present. Many senators had
sent their legislative assistants and were there
as far as getting the information was concerned.
After the hearing was finished, I visited the
offices of Senators Arlen Specter and Thad
Cochran (I was wearing my Ole Miss necktie) to
say thank you for holding the hearing. I then
visited the offices of Delmarva Senators Mikulski,
Sarbanes, Roth, Biden, and Warner to say that we
appreciate their support. I found it interesting that
the legislative assistant for Senator Warner was
not sure where Accomack County was and that he
could not remember ever having anyone from that
county come to visit before. I flew to Washington
that Tuesday morning at 6:15. The only flight
back to Salisbury leaves Washington at 10:20
p.m. It is the last USAIR flight out of
Washington. It was a long day.
Luckily September 28 was a slow newsday
nationally and internationally. Parts of the
testimony were shown on all major TV networks.
The complete testimony was shown live and
repeated several times on C-Span. There was a
very handsome man from Salisbury who could be
seen from time to time left of the speakers. [If
you would like to borrow a tape of the hearings,
let me know.]
P.D. RESEARCH CENTER
COORDINATOR SPEAKER
Lisette Bunting, R.N., M.Sc.N., Research Nurse
and Program Coordinator of the Parkinson's
Disease Research Center at Johns Hopkins
Hospital, will be our speaker at our November 30
meeting in the parlor of Asbury United Methodist
Church in Salisbury.
Lisette was the A.P.D.A. Information and
Referral Center coordinator at Johns Hopkins
from 1989 to 1993 and was at almost every
support group meeting here since she had family
to visit nearby. It will be a pleasure to have her
back again.
There are many P.D. research programs going on
at Johns Hopkins now. There is a PET scan study
over time looking for disease _markers_; a study
of changes in physical and mental abilities of
people with P.D.; a study of how we learn or
process information, using a new state of the art
M.R.I. scanner; a study comparing the long term
success of delaying Sinemet drug therapy by
using other drugs, such as Mirapex or Requip, in
the early years after P.D. diagnosis with starting
Sinemet as the first drug; a study of the
effectiveness of CoEnzyme Q-10 in treating P.D.
or slowing its progression; and a study trying to
match brain physical condition in P.D. patients
with their genetic make-up, using brains harvested
at autopsy, DNA configuration, and clinical
observation during life.
There may be a study at Hopkins in which you
would fit and in which you would be willing to
participate. There is no way I can see for a
patient to make money or not be a few dollars out
of pocket for travel expense, but there may be
other rewards more important than dollars.
LUNCH IN HISTORIC
PRINCESS ANNE
We couldn't have had a prettier day for our
September 18 welcome back luncheon, sunny
with a high of 75o.
Bob Murphy and Bill Green of the Washington
Hotel Inn were our hosts for a delicious meal at
a most reasonable price. The food was not only
good, it was also attractively served on large
plates to make eating easier for those of us who
are less dexterous. The waitresses were efficient
and gracious, making sure everyone was well
taken care of. Twenty-nine of us were present to
enjoy this opening of our 1999-2000 season. The
chapter was able to pay for this event thanks to
generous memorials for several of our friends
who have died recently.
EXERTHON RAISES
MONEY FOR A.P.D.A.
Our exerthon, the chapter's annual fund-raising
event, was held as scheduled on October 19 at the
Ocean City Health & Racquet Club despite the
visit of Hurricane Irene. Sixteen exercisers, the
instructor Jeff Urban, and two physical therapy
students from U.M.E.S. braved the storm to learn
first-hand the benefits of exercise and to
contribute to the cause. Sylvia Schiff brought in
the most money, which was given in memory of
her husband Isadore. Kathleen Holland's pledges
were just a few dollars less than Sylvia's. Mary
Sanford made good her promise to contribute $10
for each exerciser. (Mary did not count Irene,
because she did her exercising outside, although
she did manage to cause a few leaks inside.)
Because of the generosity of the Club and our
other sponsors, all of the money raised goes for
research. How much? Mailed in to the exerthon
before the actual event: $943.00; from the
exerthon that day: $603.00; and mailed in so far
since October 19: $175.00, for a grand total of
$1,721.00. Congratulations, you all!
Combined with the chapter's annual contribution
this fall to the A.P.D.A. which was $2,362.56,
we have sent $4,083.56 to our main office to help
in the search for the cause and a cure for
Parkinson's.
ENTACAPONE / COMTAN
IS F.D.A. APPROVED
The experimental drug Entacapone, a COMT
inhibitor produced by Orion Pharma of Espoo,
Finland, was finally approved October 20 for sale
and use in the United States.
The drug will be known as Comtess in Europe
and Comtan in the United States and will be
marketed by Novartis Pharmaceuticals
Corporation. To the best of my knowledge, the
medication is not yet available at local
pharmacies. This drug is a Catechol-O-Methyl-
Tranferase enzyme inhibitor which, like
carbidopa, has the protection of levodopa as its
primary if not total function. News releases from
Novartis have not mentioned prices.
This is similar to Tasmar which is also a COMT
inhibitor, but unlike Tasmar does not cross the
blood/brain barrier and bring on serious liver
problems. Unlike the new agonists Mirapex and
Requip, Comtan is ineffective unless used with
levodopa.
This is the experimental drug I have been using
for the past sixty-five months in the SEESAW
[Safety and Efficacy of Entacapone Study
Assessing Wearing-off] program at Robert Wood
Johnson Medical School in New Brunswick, New
Jersey. I am not sure how I feel about Comtan.
The product seems to have done me no harm.
There have been no serious side effects reported.
At the beginning of the SEESAW study I found
that I needed to reduce my Sinemet to avoid the
dyskinesia brought on by too much Sinemet. As
the months went by, I needed to increase my
Sinemet medication as the Parkinson's
progressed. I think I could have gotten the same
effect by substituting an increase in Sinemet.
I expect to journey to New Jersey sometime in
the next thirty days for the final assessment. I do
not think Comtan will be a major factor in the
treatment of the symptoms of Parkinson's disease.
I will probably be better able to evaluate Comtan
after I stop taking it at the end of the trial. There
has been nothing in the literature indicating
problems with stopping the medication. I have
received the benefit of extremely good care as a
participant in the study.
BRAINS NEEDED BY
JOHNS HOPKINS
Johns Hopkins has received financial grants from
the National Institutes of Health for more
Parkinson's research, but there are some grants
that government cannot provide.
In several areas of P.D. research human brains
are needed. Brains are needed to confirm the
P.D. diagnosis in many patients. Supposedly
almost a quarter of the people diagnosed as
Parkinson's do not show P.D. at autopsy. Clinical
diagnostic procedures could be improved by
comparing the brains of people clinically
diagnosed and autopsy confirmed as having
Parkinson's to other brains. Recent genetic
findings have intensified DNA research which
often needs brain tissue.
Donation of brain tissue at death will be at no
cost to the donor's family. Johns Hopkins will
harvest the brain if the donor dies within about a
hundred miles of Baltimore or arrange to have a
medical facility perform brain removal if outside
the Baltimore area. Brain removal is a relatively
easy and neat procedure after death, and the
incision is so invisible that open casket viewings
are no problem.
Advance arrangements are imperative. There are
donation forms to be filled out, and family
members should be advised of the intent to make
the donation at the time of the agreement between
the donor and Johns Hopkins. If arrangements for
a brain donation have been made early and
carefully and family members are made aware of
the donation decision, this highly personal and
valuable gift may be made to benefit the living
Parkinson's disease patients without incon-
venience to the family of the deceased.
This is a gift that may be made by anyone with
Parkinson's disease, not just the wealthy and not
just the poor. Many years may pass before the
actual donation is made, but the agreement form
should be made now. At least two of our group
have completed the brain donation agreement
form. To get a brochure and the necessary forms,
call or e-mail me, or call Mrs. Lisette Bunting at
410-614-1242, or send her an e-mail request at
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Will Johnston
Happy Holidays!
