PARKINSON'S NEWSLETTER
of the Delmarva Chapter, American Parkinson Disease Association
April 1997 - 4049 Oakland School Road Salisbury, Maryland 21804-2716
1-410-543-0110
FAX (410)749-1034 e-mail [log in to unmask]
+++++++++++516 COPIES SNAIL-MAILED APRIL 22, 1997++++++++++++++
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GENERAL INTEREST:
UDALL BILL INTRODUCED
HOW CAN YOU HELP GET THE UDALL BILL ENACTED?
MANY BREAKTHROUGHS IN PD TREATMENT, BUT!
AUGUST A.P.D.A. NATIONAL CONVENTION TO BE IN NASHVILLE
REGIONAL INTEREST:
COASTAL HOSPICE AND HOME HEALTH CARE
APRIL DECLARED PD MONTH IN MARYLAND
LOCAL INTEREST:
MEETING WEDNESDAY APRIL 30 AT 1:00, ASBURY METHODIST
CHURCH, SALISBURY --PHYSICAL THERAPY RESEARCH RESULTS
HEALTHFEST '97
OBITUARIES & GIFTS
DISCLAIMER:
UDALL BILL INTRODUCED IN SENATE AND HOUSE
The Morris K. Udall bill was introduced in both
the House and Senate on Wednesday, April 9,
1997. The content of the bill is virtually
unchanged from the bill introduced in the
previous congress according to what I have been
told. I have not seen the actual wording of the
1997 version.
This time our chances for passage are much better
than in the two previous attempts. We are getting
a much earlier start, a majority of both houses of
congress have given us support before, and we
are wiser politically and better organized. All of
the national Parkinson's disease organizations
seem at last to be willing to cooperate with one
another in the attempt to get passage in this
congressional session. The national mailing lists
are not merged yet, but the rivalry appears to be
lessening.
The federal government is by far the biggest
Parkinson's research provider with the funding
already in place. We are trying for $100 million
annually to replace the current approximately $26
million per year in federal expenditures provided
specifically for Parkinson's research. The total
money raised by all national Parkinson's disease
organizations combined is less than $5 million.
Most other funding in the United States has come
from the various pharmaceutical and medical
equipment companies who are trying to produce
or test proprietary products. Pure research into
the cause or causes of Parkinson's disease has
generally lacked the depth which it should have
thanks to a shortage of pure research dollars.
HOW CAN YOU HELP GET THE UDALL BILL ENACTED?
First realize that the Udall Bill is important to us. Medical
research does not just happen. It takes manpower and other
resources, all of which cost money. The federal government is
and has been the largest single supporter of medical research in
this country. All the drug/pharmaceutical/medical-equipment
producers collectively currently spend slightly more on medical
research than the federal government. Medical research funded by
the national Parkinson's organizations is important but minuscule
compared to government and drug company research.
Drug companies generally concentrate on testing their own
products. Parkinson's disease research by or funded by the federal
government has been based upon perceived relative need and
probable success of research proposals as determined by the
National Institutes of Health, considering its overall budget.
Compared to medical research for other diseases, we feel that we
have received far less than our fair share of federal research
dollars. We feel that there is a high probability of a major
breakthrough soon with increased spending.
Write to your senators and congressman asking for their support
and co-sponsorship of S.535 in the Senate or H.R.1260 in the
House of Representatives. The very short title is ~A Bill to
Amend the Public Service Act to Provide for the Establishment of
a Program for Research and Training with Respect to Parkinson's
Disease.~ Senator McCain is the lead sponsor in the Senate, and
Congressman Upton is the leader in the House of Representatives.
If you would rather telephone ~ writing is difficult for many of
us ~ the toll free number for the House and Senate is 1-800-962-
3524.
As of April 10, 1997, there are 111 co-sponsors in the House and
37 co-sponsors in the Senate. Maryland Senators Mikulski and
Sarbanes are already co-sponsors. Virginia Senator Robb is a co-
sponsor. Delaware Senator Biden has supported us in the past, but
has not officially signed on as a co-sponsor this time. We need to
contact all our area congressmen. Maryland Congressman
Gilchrest has supported us before, but has not yet joined us in this
congressional session. Delaware Congressman Castle or his office
will meet with a PD delegation in Washington April 23.
We found out last session that merely having a majority of the
congress on our side as co-sponsors does not guarantee passage of
a bill. We found out the hard way! We need to win over a big
majority to apply the pressure needed to get the Udall Bill to the floor for
a vote.
MANY BREAKTHROUGHS IN PD TREATMENT, BUT!
In recent months there have been many TV and
newspaper stories about new medications and new
medical treatments for Parkinson's disease.
Guilford Pharmaceuticals in Baltimore announced
a virtual cure in the form of a brain cell/neuron
rebuilding drug which could be taken orally. A
drug company in Richmond, Virginia, announced
that they had developed a dopamine substitute /
agonist which could be applied to the skin as a
patch like the nitroglycerine patches for heart
trouble or the nicotine patch designed to help
people stop smoking.
One major drug company is so overloaded with
new Parkinson's medications [Pramipexole and
Cabergoline] that they are introducing one of
them [Cabergoline] for something other than
Parkinson's, so that it will not be officially
competing with Pramipexole in the new drug
market. Neurologists are being told about the
benefits of Cabergoline for their PD patients and
are to be given unofficial dosing guidelines to
~cross prescribe~ for Parkinson's.
Medtronics which has gained fame as the leading
designer and manufacturer of cardiac pacemakers
has successfully launched an implantable device
similar to their cardiac defibrillator which, when
implanted with one part in the chest and a wire
running into the brain, will temporarily stop
tremors on command.
Another pharmaceutical company and a group of
surgeons are implanting pig fetus cells into
Parkinson's patients' brains, and appear to be
having some success based upon a small group of
patients.
Practically all the breakthroughs we hear about on
the evening TV news are the result of ~news
releases~ issued by pharmaceutical manufacturers
who are publishing the results of their own tests
of their own product or the results of testing they
have funded and designed. We should have better
and more objective research to get the honesty
and quality we expect for our health needs. I hope
we will be able to recognize a real breakthrough
when it comes. I do not think it is here yet.
AUGUST A.P.D.A. CONVENTION TO BE IN NASHVILLE
The usually biennial American Parkinson Disease
Association convention will be held in Nashville,
Tennessee, August 14- 17. With the money crunch and
changes in some of the national office personnel,
the ~every-other year~ pattern was broken in 1996.
I complained about too much being spent on POSH
accommodations and sumptuous dining at APDA expense
for the 1992 and 1994 conventions.
>From preliminary information, the 1997 convention
looks more business-like and less like a resort
vacation. I will enjoy the convention far more
knowing that money needed for research is not
being squandered in riotous living.
+++++++++++++=REGIONAL++++++++++++++
COASTAL HOSPICE AND HOME HEALTH CARE
At our March meeting at Atlantic General
Hospital in Berlin, Ms. Sandy Wabeck,
Volunteer Coordinator for Coastal Hospice, told
us hospice is about enjoying quality of life and
not just about dying. The hospice movement
started in London in 1968, and Coastal Hospice,
Inc., formed in 1974, now serves Maryland's
Wicomico, Worcester, Somerset, and Dorchester
counties.
Coastal Hospice, Inc. is a non-profit community-
based organization that makes no charge for its
services. Its funds come primarily from
donations and memorials. It does not get state or
federal funding. If there is insurance coverage,
they will bill the insurance company.
Each hospice patient is assigned a registered
nurse, a home health aide, a social worker, and
(if desired) a spiritual advisor. There are also
physical therapists, nutritionists, and volunteers
who provide help for the regular caregiver or
family. Volunteers must get at least thirty hours
of training before serving patients or their
families. Coastal Hospice uses a team
management approach, and the team meets
weekly to discuss the care of each patient.
The ~Home Health Care~ eligibility is more
demanding than that of the hospice service. For
hospice care, the only requirement is a life
expectancy of six months or less. If one outlives
the six-month prognosis, service will continue.
For ~Home Health Care,~ the service is limited
to services in the home requiring skilled nursing
care. Skilled nursing care is difficult to define
precisely, but it is a level of nursing care which
would require the services of a highly trained
nurse rather than a nurses' aide or practical nurse.
Ms. Wabeck and Ms. Dawn Rea Scher, who
accompanied her, addressed our group primarily
to tell us what they could do for us. They also let
us know that they need volunteers to help provide
hospice services for others. There are lots of jobs
to be done, and they will provide training for
those who want to help.
APRIL DECLARED PD MONTH IN MARYLAND
Governor Parris Glendening has proclaimed April
1997 as Parkinson's Disease Awareness Month in
Maryland, joining with Virginia, Maine, and
several other states and cities. April 11 was
Parkinson's Disease Awareness Day in several
European nations.
State governments have a vested interest in us as
Parkinson's patients since we are taxpayers and
many of us are users of state facilities. As
taxpayers, our disability results in fewer tax
dollars going into the state treasuries. In
Maryland a portion of otherwise taxable
retirement income may be received state and
county income tax-free if the retiree is disabled
[as may be the case with Parkinson's] or at least
age 65. An under 65 retired spouse of a
disabled person may also exclude a portion of
his or her normally taxable retirement income.
[I left the bold printed sentence out of last
month's newsletter because I was not aware of it.
I found it a pleasant surprise. It saved us a few
hundred on our Maryland and county income
tax!]
Governor Glendening has been unusually
solicitous of the Parkinson's problem and the
problems of the Eastern Shore lately. His frequent
visits to the Eastern Shore in recent months may
be only the prelude to his run for re-election, but
we still appreciate the attention.
I intended to show a Xerox copy of his proclamation
to the March meeting, but I forgot to get it out
with everything else going on. I think we should
thank our governor for his symbolic support of our
cause.
++++++++++++++++++++LOCAL INTEREST++++++++++++++++
MEETING WEDNESDAY APRIL 30 AT 1:00
ASBURY METHODIST CHURCH, SALISBURY
PHYSICAL THERAPY RESEARCH RESULTS
Our April speakers will be Jim Cope, Gary
Short, and Ed Jordan, the University of
Maryland-Eastern Shore physical therapy students
who did original research in the evaluation of
physical therapy needs by Parkinson's patients.
They are scheduled to present their findings in a
formal presentation at U.M.E.S. on April 28 and
to our group the following Wednesday.
Althhough I have not seen their work or findings
yet, I think their research should be considered a
valuable contribution to both the physical therapy
and Parkinson's disease communities, should be
publishable in a major professional journal, and,
most important for them, should more than satisfy
the research course requirements for graduation
from the physical therapy program.
Several people in our support group and in the
Southern Delaware (Harrington) Parkinson's
Disease Support Group volunteered as subjects
for the U.M.E.S. study. It should be an
interesting meeting, particularly to those who
participated in the study.
The meeting was changed from the last Tuesday
of the month to a Wednesday to mesh with the
speakers' class schedules. This semester at
U.M.E.S. Tuesdays are heavy class days in the
Physical Therapy Department, and final
examinations are just a few days away. They
expect to graduate before our May meeting.
We will meet in the church parlor. Asbury United
Methodist Church is located at Camden Avenue
and Dogwood Road just south of Salisbury State
University.
HEALTHFEST '97
Healthfest, sponsored by Peninsula Regional
Medical Center, was held Saturday, April 12, at
Bennett High School in Salisbury. At our table we
were able to present PD materials for other
health-care organizations and the general public to
see and pick up. We made several useful contacts
which will result in speakers for us and an
opportunity to educate health professionals.
+++++++++++++OBITUARIES+++++++++++++
ISADORE SCHIFF
Mr. Isadore Schiff of Ocean Pines died in March
after fighting Parkinson's for many years. Izzy
and his wife Sylvia have been active in our
support group and have been very supportive to
others in our group. Our sympathy goes to his
wife Sylvia and others in his family. This month's
Parkinson's Newsletter is being produced and
mailed in memory of Izzy Schiff.
VIRGIL WEBSTER
Mr. Virgil Webster of Salisbury died in April of
complications of Parkinson's disease. Virgil was
severely disabled by his Parkinson's and was
unable to go out for his last few years. He did
relatively well at Deer's Head the last year of his
life. Our sympathy goes to his wife Juanita, his
daughter Kim Hughes, and others in his family.
GIFTS AND MEMORIALS
Memorial gifts in remembrance of Isadore Schiff
have been received from Cecile & Sidney
Schneider of Morristown, New Jersey, from
Walter & Irene Wolfe and Doris M. Tyson of
Berlin, Maryland, from Louis & Joyce
Angellella of Fairless, Pennsylvania, and Frances
Citrano of Ormond Beach, Florida.
A memorial gift was received from George
Crosley of Salisbury in memory of his wife
Dorothy Crosley.
A memorial gift was received from Lois
Whittaker of Hebron, Maryland, in memory of
her husband John Whittaker.
A gift was received from Edward and Shirlee
Allen of Redwood City, California.
There are no chapter dues. Newsletter and other
chapter expenses are paid from memorials and
other gifts. Any excess income is used to fund the
annual Walk-A-Thon, so that all funds raised in
that drive go to medical research. Every
September 60% of the chapter bank balance is
sent to our national organization. We have no
employees, pay no rent, and all labor is
performed by volunteers. We are a 501-c-3 non-
profit organization, and all gifts are deductible
for those who itemize deductions on their income tax.
DISCLAIMER {6 pt type}
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. I've
gone to look for myself. If I should return before I
get back, please keep me here.
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
