PARKINSON'S NEWSLETTER of the Delmarva Chapter, American Parkinson
Disease Association October 1996
FAX (410)749-1034 e-mail [log in to unmask] - SNAIL-MAILED
505 COPIES 10/23/96
GENERAL INTEREST: UDALL BILL
ELDEPRYL UPDATE
ALTERNATIVE MEDICINE
REGIONAL INTEREST: BALTIMORE SYMPOSIUM
LOCAL INTEREST: BERLIN [MARYLAND] MEETING-JOHNS HOPKINS NURSE
ON CAREGIVING [OCTOBER]
SALISBURY [MARYLAND] MEETING-PALLIDOTOMY
PATIENT TELLS STORY [NOVEMBER]
BAD NEWS ABOUT UDALL BILL
The Udall Bill as a part of the National Institutes of Health
Revitalization Act came out of committee in the senate and was
passed by the entire senate unanimously. The bill was virtually
intact except that funding was reduced from $100 million to $80
million per year. We had well over half the members of
the senate as co-sponsors.
We also had over half of the members of the house as co-sponsors,
and passage would have been almost certain if the entire House of
Representatives had been allowed to vote. The Udall Bill never got
out of committee. With help from Congressmen Bliley (R. VA),
Bilirakis (R. FL), and Smith (R. NJ) passage
would have been easy. Unfortunately, Congressman Bliley as a
committee chairman with assistance from Congressman Bilirakis
delayed any semblance of introduction of the bill until just before
adjournment. At that time Congressman Smith let it be known that he
would vigorously oppose the bill and thereby delay the closing of
congress for an unknown amount of time.
Congressman Smith was apparently against the bill because it may
have provided some funding of fetal tissue transplant research.
Fetal tissue transplantation is probably not a viable cure hope for
us anyway since the French 'morning after' pill is soon to become
readily available in the U.S.
We will try again next session. The bill has received bipartisan
support, and we expect bipartisan support again. This time it should
be easier since our story has been told enough to make our
congressmen aware of our problems.
POLITICS: Senator Joe Biden (D, DE) and Congressman Wayne Gilchrest
(R, 1stMD) were co-sponsors of the Udall Bill and are up for
re-election. President Bill Clinton took a controversal stand for us
when he lifted medical research bans imposed by former President
George Bush. Check on the challengers.
ELDEPRYL HAS GENERIC AND GOES TO CAPSULE
Eldepryl, also known as Deprenyl or Jumex, is selegiline
hydrochloride. The pills were small round white tablets packed in
thick clear glass bottles until a couple of years ago. Then it was
slightly reformulated to include a little vitamin C, reshaped into
a tiny shield, and packed in short tan plastic bottles. Now it
is a blue capsule in a very standard looking off-white plastic
bottle.
Now there is a generic version of selegiline hydrochloride tablets
available through pharmacies from Lederle. Current quoted price for
60 doses from Super G [Giant] pharmacy in Salisbury is $138.96 for
Eldepryl and $114.96 for Lederle. A price war may break out as more
generics become available. The profit margin on Eldepryl has been
significant. Several people in the U.S. have taken a =FEdrug holiday=FE
by flying to Hungary and buying a couple years' supply at a price of
approximately $2.00 U.S. per 60 Jumex tablets and paying the air
fare from the savings. In the latest A.P.D.A. mailing there is a
Lederle coupon for a free bottle of 60 tablets. The coupon expires
11/29/96. Coupons worth almost $115 in free medicine are not often
seen.
The new Eldepryl capsules are the exact same formula and identical
to the tablets according to the U.S. manufacturer, Somerset
Pharmaceuticals. The shelf life of th capsules may be shorter. The
tablets I bought on 8/23/96 had an expiration date of January 1998,
the same expiration date as the ones I had purchased on 5/31/96. The
capsules I purchased 10/14/96 have a June 1997 expiration date. I
telephoned Somerset Pharmaceuticals and asked if the formulation was
changed and why the expiration was so short for the capsules. I was
told the formulation is the same, but the F.D.A. on short notice had
approved only 18 months from manufacture as maximum shelf life. I
also asked about the advent of generic selegiline hydrochloride and
was told that the generics are not equivalent to the Somerset
product and that the potency of the generics varies from 40% to 300%
of the proprietary Eldepryl.
Switching to the generic may require a new prescription since
Eldepryl capsules are not generic tablets.
The switch to capsules is almost surely a ploy to discourage the use
of generics. The varying degree of otency, if true, could be a
serious problem for us with Parkinson's. Some drug companies are
considering producing a patch with Eldepryl or making a tmed-release
pill with a laser-holed plastic outside coating similar to
ProcardiaXL, a heart medication.
The drug has had a very strange history. It was developed in Hungary
during its Communist years. It was originally intended to be an
antidepressant, but it failed miserably for that use. The first
human clinical tests for use as an anti-Parkinson's drug were under
the supervision of a former Nazi SS physician. Until recently it was
manufactured exclusively in Hungary and was a major portion of
Hungary's exports, second only to light bulbs. Marketing of Eldepryl
in this part of the world is handled by Sandoz Pharmaceuticals, a
Swiss firm which a few years ago tried to take over McCormick and
Company (the Baltimore spice maker) but was persuaded by handsome
payments from McCormick not to. Eldepryl [then called Deprenyl] was
studied intensely in the DATATOP which supposedly tested the
effectiveness of Eldepryl and vitamin E alone and in combination
with one another. Vitamin E was found to be not effective, but
Eldepryl was thought to preserve or protect brain neurons. This is
still being argued. It is known that Eldepryl does provide some
symptomatic relief at least for some Parkinson's patients.
Eldepryl is not without serious side effects. The commonly given
anesthetic or pain-killing drug Demerol[meperidine] can be fatal to
patients who have taken Eldepryl during the preceding two weeks. A
recent British study has found that the mortality of patients on
Eldepryl is higher than similar patients not taking Eldepryl. This
study, according to some, is seriously flawed and is in direct
conflict with the DATATOP studies.
Should you use Eldepryl, the generic substitute, or neither? The
answer is far from clear. I find that Eldepryl provides me with
symptomatic relief, and I hope it provides me protection from brain
neuron cell death. If it did not provide symptomatic improvement, I
would not take it! This is the position taken by the Parkinson's
Disease Foundation. (I'll try my coupon.)
SHOULD WE CONSIDER ALTERNATIVE MEDICINE?
The medical profession, led by people who have been graduated with
the M.D. degree from accredited medical schools, have taught most of
us that their kind of medicine and healing is the only safe and
effective system for health care. Are they right or just persuasive
salesmen?
The traditional system of medical care is no longer the only health
care available. The D.O. (Doctor of Osteopathy) degree frowned upon
thirty years ago is now usually accepted as a general equivalent to
the basic M.D. degree. Nurses who were expected to provide only
tender loving care and to carry bed pans are now as nurse
practitioners providing first line medical care. The Doctor of
Chiropractic (D.C.) practitioner is still usually considered to be
non-traditional and somewhat below the M.D.'s and D.O.'s, but many
medical insurance plans give them tacit recognition by paying their
fees as a medical cost.
The medical community has done wonders for us. As a result of their
expertise, refrigeration, indoor plumbing, central heating and air
conditioning, and several other improvements to our environment, our
life spans are increasing and our quality of life is going up. The
"good old days" with outdoor privies and a life expectancy of less
than 50 years are behind us, but we want and expect even more.
Traditional medicine has done much for us, but we want more.
The failure of the traditional medical system to provide all we want
has led to the rejuvenation of alternative medicine, some of which
may be of value today and a part of traditional medicine in the
future. Some is pure quackery promoted by well-meaning practitioners
and patients who sincerely believe in the alternative medicine they
are promoting. Some alternative medicine and probably some
traditional medicine are creations of charlatans designed to bring
profits or honors. The problem is how to find out what is good, what
is useless but harmless, and what is bad.
At the Salisbury Business Expo trade show, I was shown a
revolutionary health product from Japan, a pair of alnico magnets
which will cause a red light to go on when the magnets are spun.
There were also magnetic pads which I was told might help
Parkinson's disease symptoms if I placed them in my shoes.
I told the salesman that my trouble was not in the feet and left.
I received in the mail some material on a nutritional supplement
which I started to discard as quackery since the claims for it
ranged from curing cancers to helping with coronary artery disease
and Parkinson's. In looking through the material, I saw that the
publisher was in the business of selling the product. Then I noticed=7F
names of practitioners who reported good results from use of the
product. They were affiliated with highly esteemed traditional
medical institutions.
Vitamin and mineral products are generally tolerated by traditional
medicine since they seldom cause harm. Many vitamin products are
made by or sold by major ethical drug companies. We know that
vitamins are necessary for good health, but do we get enough in our
regular diets? Calcium supplements once thought to be useless are
almost universally praised for women today. The usual disclaimer
statement found in newsletters says that you should ask your doctor
before trying anything new. Your doctor is part of the traditional
medical system and probably taught to tell patients to use only
traditional medicine except for assistive prayer and chicken soup.
The traditional medical system, including the F.D.A., knows that
many of us use alternative medicines from time and tries to protect
us from what they believe to be harmful to us and occasionally what
may be bad for the traditional medicine provider.
Should you use remedies from the health food store such as melatonin
and CoQ10 which are gaining in reputation even among traditional
medical people? Are large doses of vitamin C as beneficial as
claimed by a famous Nobel Prize winner? Is acupuncture a viable and
useful cure for many of our ailments? Some exercise is good for us,
but how much is enough? Are organically grown bug-bit vegetables
better for us than what we usually find in the supermarket?
We as patients must take a larger part of the responsibility for our
own care. We need to consider ALL medical options carefully.
PALLIDOTOMY PATIENT AT NOVEMBER MEETING
Nick Nieberding will relate his experience as a Johns Hopkins
pallidotomy patient at our November meeting. Nick, the Ponzetti's
Pizza man, is one of our younger members and a fellow who will "tell
it as he sees it." The November meeting will be in Salisbury at the
Asbury United Methodist Church near Salisbury State University on
Tuesday, November 26, at 1:00 p.m.
MEETING TUESDAY OCTOBER 29 AT 1:00 ATLANTIC GENERAL HOSPITAL IN
BERLIN
JOHNS HOPKINS PD CENTER NURSE SPEAKER FOR OCTOBER MEETING
Paula Goldberg, R.N., nurse coordinator for the Parkinson's Disease
Center at Johns Hopkins Hospital, will be our featured speaker at
the October meeting. Ms. Goldberg is the person you get when you
call the A.P.D.A. Information and Referral Center at Johns Hopkins.
She has gained considerable experience in working directly with
Parkinson patients and their families at Johns Hopkins. Her talk
will deal with the role of the care giver and probably include=7F
several tips to make caregiving more efficient and effective. Care
givers need care too.
This is a topic which we have not considered before as a central
theme for a meeting. Your ideas and experiences can be a help to
others at our meeting and through Ms. Goldberg to members of other
groups in Maryland as well.
To get to Atlantic General Hospital from Salisbury, take Route 50
east toward Ocean City. Do not take Route 90. Pass the first two
roads to Berlin. Turn right on Route 113 and quickly get in the
center lane. At the traffic light turn left [do not make a U-turn].
Turn left at the Berlin Nursing Home. Atlantic General is near the
end of that road. Go in the front door and turn left. We meet in the
room just before the cafeteria.
BALTIMORE SYMPOSIUM FULL OF IDEAS
The Parkinson's Disease symposium held October 5, 1996, had about
three hundred attenders. The talks went well, and the sound system
worked most of the time. The presentations were not videotaped.
Dr. George Paulson of Ohio State University Hospitals stated that
the progress of the disease cannot be predicted and that we should
not give up, because of the possibilities of new discoveries.
Dr. Stephen Reich of Johns Hopkins Parkinson's Disease Center saw a
bright future for Parkinson's patients, at least in part because we
now are able to create Parkinson's symptoms in animal models for
more effective research.
Dr. Ted Dawson, also of Johns Hopkins, said two causative factors
were agreed upon: risk increases with age and males are more likely
to have Parkinson's. Infections, trauma, genetics, toxins, fewer
dopamine producing cells to start with, and environment are all
possible causes of Parkinson's. The body makes free radicals and
other toxins. Our cell defenses may be defective.
Dr. Ted George, formerly of Johns Hopkins but now of Wayne State
University Hospital, talked about the many manifestations of
Parkinson's, particularly dysfunction of those activities of the
body we do not consciously control. He stressed being sure to inform
your doctor of ALL symptoms, even mild ones, to help sort out what
is caused by Parkinson's and what is caused by drug side effects.
Leslie Gibson, R.N., a humor specialist, quoted, "Yesterday is
history. Tomorrow is a mystery. Today is a gift. That's why we call
it =FEThe Present.'"
Dr. Fred Lenz, a Johns Hopkins neurosurgeon, stressed the idea that
the pallidotomy and thalamotomy operations are low risk surgeries so
long as the patient's neurologist is a part of the team from the
very beginning, there is considerable brain mapping before the
operation, and only one side is done at a time.
The patient panel dealt with coping. Ed Calhoun discussed his drug
interaction problems and how he dealt with both Parkinson's and
kidney cancer. Bruce Miller, a salesman, told of his stuttering and
emotion problems and how he is working to find a substitute for the
stereotactic frame used in neurosurgery. Will Johnston told of his
stay-busy activities in medical studies, newsletters, and political
lobbying. Tom Collins discussed how understanding improved family
relations. Jeanne Michaels told about the slow progress of her
Parkinson's and the near-miraculous improvement of a young lady who
had a pallidotomy. Marvin Mervis talked about some daily tricks he
uses to get by, and he recommended a book that he said changed his
life, As a Man Thinketh, by James Allen which says good actions and
thoughts can produce nothing bad. It was a long and busy day.
THERE WILL BE NO MEETING IN DECEMBER
DISCLAIMER [in 7 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. Three neurologists and
three patients were going to ride on a train. Each neurologist
bought a ticket and took a seat. The three patients bought one
ticket and boarded the train and jammed themselves into the rest
room. When the conductor came through he collected tickets from
the three neurologists. He then tapped on the rest room door and
said, =FETicket please.=FE One hand came out of a barely opened door and
handed over the ticket. The neurologists realized they had learned
something from the patients. On the return trip the three
neurologists bought one ticket, and the patients bought none. The
three neurologists jammed themselves into a rest room. The patients
did the same. As the train pulled out one patient left one rest room
and tapped on the other rest room door. "Ticket please."
Will Johnston [in 36 point script]
WILL JOHNSTON 4049 OAKLAND SCHOOL ROAD
SALISBURY, MD 21804-2716
410-543-0110
Pres A.P.D.A. DelMarVa Chapter
63 Dx1991 Symptoms 1971 =20
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+ Repeal the 23rd Amendment before 2000 +
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