PARKINSON'S NEWSLETTER of the Delmarva Chapter,
American Parkinson Disease Association
February 1997
4049 Oakland School Road Salisbury, Maryland 21804-2716 1-410-543-0110
FAX (410)749-1034 e-mail [log in to unmask]
OF GENERAL INTEREST: FEBRUARY MEETING IS ABOUT HOW TO SURF THE INTERNET
AND USE LISTSERV (LOCAL MEET BUT RELEVANT TO THE
LISTSERV.
RULES FOR SPENDING DOWN FOR MEDICAID ARE CHANGED?
A LOOK BACK AT 1996 & PARKINSON'S
REGIONAL INTEREST: VIRGINIA DECLARES APRIL PD AWARENESS MONTH
LOCAL INTEREST: DEATHS, MEMORIALS, GIFTS, FUTURE MEETINGS
DISCLAIMER: USUAL + JESUS SEES YOU
MEETING TUESDAY FEBRUARY 25 AT 1:00
IC-NET, 1520 U.S. 13 SOUTH, SALISBURY
SEE PARKINSON'S AND THE INTERNET
The February meeting will be held at the office of
IC-NET, a shore based access to the Internet.
This is a chance to see what resources are
available on the Internet and some of the uses of
~cyberspace.~ The emphasis will be on the
parkinsn(misspelled with an ~o~ left out on
purpose since many computer file names are
limited to eight letters) listserv, which is a
worldwide Parkinson's disease support bulletin
board based in Canada and free to its about 1,500
members (called subscribers), and on other
Parkinson's sites.
The Internet has far more than just Parkinson's
disease information. I am on a joke network. I
automatically get a listing of ~cheapie~ air fares.
Through the internet, I contacted two old college
friends I had not heard from in over forty years.
We were in school together in Illinois, but I
found one in California and one in Michigan. On
Valentine's Day I was at Robert Wood Johnson
Medical School for my experimental drug
(Entacapone) check-up and helped a nurse ~surf
the Internet~ for information about Marfan's
syndrome(a genetic problem totally unrelated to
Parkinson's). My neurologist is in New Jersey,
and we communicate between visits by e-mail. I
am due for experimental testing at the University
of Pennsylvania next month. We handle the
details by e-mail.
The presentation will be done on a large screen,
and you will be invited to ~surf~ on your own
afterwards. You do not have to own a computer
to ~get on line,~ for the Wicomico County library
has computers hooked to the Internet.
DIRECTIONS TO IC-NET
Coming from Salisbury, go south on Salisbury
Boulevard [Business Route 13], pass Salisbury
State University, pass Edgehill Pharmacy, and
pass Kay Avenue. Get into the right lane, and
turn right as you pass the Dollar Store. IC-NET
is a low grey building. It was the Ponderosa
restaurant in years gone by. If you miss the turn,
you will have to make a big loop, since Route 13
has a median strip dividing north and south bound
traffic. There is lots of parking. Cookies with
fancy coffee or soft drinks will be served.
SPENDING DOWN FOR MEDICAID HAS CHANGED!
As a part of the recent medical care changes, the
Health Insurance Portability and Accountability
Act of 1996 provides that applicants and advisers
who knowingly and willfully transfer or dispose
of assets in order for an individual to become
eligible for Medicaid assistance may face up to
one year in jail and a $10,000 fine as well as
denial or postponement of Medicaid benefits. The
Medicaid program is a joint state and federal
program and has been severely abused in the past
by many who gave their assets to family members
and then filed for Medicaid benefits because they
were impoverished. The AARP is lobbying to
have this part of the law repealed, but with the
budget problems of the federal and state
governments, repeal is unlikely. Medicaid was
designed to help those in need rather than
guarantee an inheritance. Jail is probably a poor
substitute for a nursing home.
A LOOK BACK AT 1996 AND PARKINSON'S
There were no dramatic breakthroughs, but there
was modest progress in most areas:
DRUG THERAPY:
The reason why PD drugs take so long to reach
the market is that, in a slowly progressive
disease, trial subjects must be tracked for years to
ensure that (a) the benefits are lasting, and
(b)long-latency adverse effects don't sneak in.
SELEGILINE (Deprenyl, Eldepryl, Jumex):
Despite more numerous and thorough trials than
any other PD drug, debate over efficacy and
safety rages on. The most convincing opinion is
that the drug is beneficial to some, and that the
mortality scare was premature.
TOLCAPONE and ENTACAPONE: These
inhibit Catechol-O-Methyl Transferase (COMT),
a natural enzyme that destroys dopamine. In
trials, they prolonged the effect of levodopa
(Sinemet) and reduced its required dosage. Final
FDA approval of these drugs is imminent.
PRAMIPEXOLE: This dopamine agonist
completed formal trials and awaits FDA approval.
CABERGOLINE: This long-acting dopamine
agonist has passed some effectiveness trials. It is
generally well tolerated and offers the prospect of
reducing levodopa dosage to once daily. This
drug will not be marketed at first specifically as
a Parkinson's medication, but it may be cross
prescribed.
LEVODOPA ETHYLESTER (LDEE): This
injectable form avoids the wearing-off fluctuations
due to poor solubility of the oral form, as well as
the nausea that bothers many PD patients.
DIET SUPPLEMENTS: Often natural enzymes
are thought to be insufficient in normal diets, and
sometimes they get formal trials in the attempt to
join the profitable mainstream of Parkinson's
drugs. If the results aren't advertised, it usually
means they didn't do so well. There are clinical
trials (recent or current) of NADH, DHEA,
Coenzyme Q-10, other holistic medicines, and
vitamins.
NEURAL REGENERATION: A cure for PD
must include restoration of lost brain neuron
function and prevention of subsequent neuron
loss. Researchers are exploring the
progressiveness of apoptosis, or programmed cell
death. They are finding that neurons of the central
nervous system, contrary to former beliefs, can
regenerate in the presence of certain growth
factors. If the neural failure of PD can be traced
to a particular mutant gene, there is then the
possibility of grafting new cells lacking the
mutant sequence, which can be made to grow and
restore the deficient neural pathway, and which
will escape the degeneration of PD. There is a
current trial in humans of a surgically injected
Glial-cell-Derived Neurotrophic Factor (GDNF)
which has shown promise so far in rats and
monkeys. Guilford Pharmaceuticals of Baltimore
has developed a new class of drug (neuro-
immunophilins) which helps regenerate brain cells
in rats and mice whose brains had been damaged
by MPTP(a chemical known to produce
Parkinsonism) and can be taken by mouth.
Numerous new drugs and delivery systems are in
various early stages of testing. A skin patch with
a new dopamine agonist is being tested in
Virginia. Nicotine patches designed to help
smokers kick their habit are being tried as an
anti-Parkinson medication.
1996 SURGERY:
PALLIDOTOMY: This surgery has become
increasingly popular and available. Most no
longer consider it to be experimental.
THALAMOTOMY: This operation is having a
revival following discovery that the sub-thalamic
nucleus is a source not only of tremor but also of
other major PD symptoms.
DEEP-BRAIN STIMULATION (DBS): Modern
miniaturization in electronics has made possible
manufacture of a ~pacemaker-like~ device which
controls the pallidus or ventral intermediate
nucleus of the thalamus by an implanted electric
shock generator. Human trials appear successful.
FETAL CELL TRANSPLANTS: Fetal implants
continue as experimental with at least one
controlled trial underway. To overcome ethical
objections and the scarcity of aborted human
cells, pig fetal brain cells and laboratory
developed cells are in experimental stages.
Human fetal cells available for transplantation are
expected to be increasingly scarce with formal
FDA approval of the French abortion drug RU-
486.
CAUSES OF PD:
Workers still looking for environmental factors
such as geography, lifestyle, diet, and exposure to
toxins came up with various statistical
correlations, but nothing definite and conclusive.
Familial clusters, some impressively large,
suggest a genetic origin, but the majority of PD
patients have no known family linkage. Some
think familial PD is a distinct type of the disease.
Young-onset or juvenile PD seems to have greater
family linkage than the more common form which
develops later in life.
HEREDITY: Heredity is being looked to as a
cause from at least two directions. Late in 1996
a formal announcement was made concerning a
very large Italian family with enough Parkinson's
disease patients to assure researchers that some
Parkinson's is at least partly genetic in origin.
Researchers at the University of Virginia are
working on the idea that PD is inherited by way
of defective mitochondrial cells rather than
strictly by genes.
ESSENTIAL TREMOR: ET is getting much
more attention, aimed both at its cause and the
site of its origin in the central nervous system. It
seems to be much more frequent than PD and
often may be misdiagnosed as PD. From the
number of family links, researchers are almost
certain that ET is hereditary. While the thalamus
has long been seen as the origin of tremor, recent
work implicates other sites, particularly the
cerebellum. The influence of alcohol (delirium
tremens usually called ~DT's~) on the cerebellum
and on the tremor of ET supports the notion.
DIAGNOSTIC AND STUDY TOOLS:
Clinical diagnosis should get much more
sophisticated than the traditional "classic triad"
symptoms of rigidity, bradykinesia, and tremor.
Tests of memory, smell, or color perception may
detect PD long before movement troubles appear.
Positive response to levodopa remains the most
useful sign, because it affects directly the choice
of treatment.
Non-invasive scanning techniques such as
Positron Emission Tomography (PET), improved
Magnetic Resonance Imaging (MRI), and
Single-Photon-Emission Computed Tomography
(SPECT) are still very costly diagnostic tools but
are becoming more common in detailed mapping
of activity in the brain. For the time being,
clinical judgment still is the major diagnostic
procedure.
MEDICAL CARE:
The system of medical care delivery in the United
States is changing rapidly, even here in Salisbury.
We are seeing a growth of the Health
Maintenance Organizations (HMO's) which is
supposed to slow the ever rising cost of medical
care and at the same time deliver better care to
patients. Some of the ~better care to patients at
lower cost~ demanded by the HMO's such as out-
patient mastectomies have brought in government
intervention for the safety of the public.
Use of a primary physician as a ~gatekeeper~
between patients and specialists such as movement
disorder neurologists can create an artificial
barrier between Parkinson's patients and the best
medical care. Most HMO plans somewhat limit
the patients' choices in selecting health care.
Patients in an HMO can go outside the HMO
system if they are willing and able to pay for
services without using the insurance.
Some HMO organizations are aware of the
Parkinson's patients' special needs. Dr. Jack
Himes of Peninsula Regional Medical Center told
me about a recent managed care conference he
attended where there was a recommendation
which would require the HMO to keep two
Parkinson's experts on its panel of specialists.
More control over the patients and medical
practitioners has arrived in Salisbury, and even
more is probably coming in 1997. A substantial
proportion of primary care providers (some with
specialties), physical therapists, rehabilitation
facilities, and nursing home facilities have come
under ownership or control of the Genesis
system, and Mallard Landing (the retirement
community to be built on Johnson Road slated for
construction start this spring) will be under
Genesis control.
POLITICS:
The Udall bill to provide additional federal
funding for Parkinson's medical research failed to
reach the floor of the House of Representatives to
be voted on in the last session of congress in spite
of its being co-sponsored by over half of the
house members and passage in the senate. We are
trying to revive the bill for reintroduction in both
houses of congress in early 1997. Primary house
and senate sponsors from both parties are working
for us.
Our own politics are not in good order.
Managements of the American Parkinson Disease
Association, the National Parkinson Foundation,
and the Parkinson's Action Network do not seem
to be willing to work together and present a
united front to our national government leaders.
The hostility and divisiveness among the major
national Parkinson's organizations are an
embarrassment to the Parkinson's disease patients.
Their squabbles are at our expense!
MORE REALLY BAD NEWS:
There were at least fifty thousand newly
diagnosed Parkinson's patients in the United
States in 1996. Our exact number is impossible to
calculate since Parkinson's is not a reportable
disease in most states. According to most
estimates, there are over a million of us in the
U.S.A. There are millions of us world-wide.
REGIONAL INTEREST
VIRGINIA HAS PD AWARENESS MONTH
George Allen, the Governor of Virginia, has
issued a Certificate of Recognition proclaiming
April 1997 as Parkinson's Disease Awareness
Month. I will bring the certificate to the next
meeting. It's nice to know that others care about
our problem.
LOCAL INTEREST
PHYLLIS U. GIORDANO
Mrs. Phyllis Giordano of Salisbury, a long-time
Parkinson's patient, died at home February 10.
She was able to attend support group meetings
with her husband Frank until about a year and a
half ago. She will be missed.
GIFTS & MEMORIALS
A gift from Lois Whittaker in memory of her
husband John Russell Whittaker of Hebron, who
died of Parkinson's complications August 8,
1996, has been received. Gifts have also been
received from Dale Severence of New York and
Betty Franke of St. Michaels. The money will be
put to good use.
MARCH MEETING TO BE
AT AGH IN BERLIN
The March support group meeting will be held at
the Atlantic General Hospital in Berlin. At the
January meeting we had about as many people as
the room would hold. If we expand more we may
need to look for more space.
We do not have a program lined up for March
yet. We could have a strictly support group
meeting, another Internet session, a travel
specialist as a main speaker, a session on
Parkinson's and politics, a session on Parkinson's
drugs - good and bad - or a program suggested by
you. I have asked a local neurologist to speak at
our April meeting at Asbury Methodist Church in
Salisbury, but I do not have a definite ~O.K.~
Most APDA chapters are having their Walk-A-
Thons in May. Other Maryland chapters and
Johns Hopkins have decided to walk in the fall.DISCLAIMER (in 6 point type)
At the suggestion of the new 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. A burglar entered a house on a dark night intent upon
stealing
anything of value. As he moved in the dark he heard a voice say ~Jesus sees
you.~
As he
moved further into the house, he again heard a voice say ~Jesus sees you.~ The
voice had
an unusual quality. He pulled out his flashlight and found the voice belonged to
a parrot.
The parrot repeated the admonition, ~Jesus sees you.~ The burglar sighed with
relief and
asked the parrot, ~What is your name?~ The parrot replied, ~Homer.~ The burglar
then
laughed and asked, ~What idiot would name a parrot ~Homer~?~ The parrot
answered,
~The same idiot who named his Rottweiler ~Jesus~!~
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
