Pasted below is the April, 1995, issue of the Perkinson's
Newsletter of the Delmarva Peninsula. This was uploaded to
me by J. Williams for re-posting to this List.
Best,
Bob
-----------------------------------------
PARKINSON'S NEWSLETTER of the Delmarva Chapter, American
Parkinson Disease Association April 1995 - 4049 Oakland
School Road Salisbury, Maryland 21801-2716
1-410-543-0110 ***FAX (410)749-1034***PRODIGY PNFX85A***AOL WI LLMMSJ
SENATE INTRODUCES UDALL BILL
Senator Mark Hatfield introduced the Morris K. Udall
Parkinson's Research, Assistance, and Education Act in the
Senate Thursday, April 8, 1995. This is important
legislation to us for at least three reasons. First and
foremost, it is an authorization bill which should lead to
more federal funding. Second, it has been a stimulus which
has made individuals in the Parkinson's community more
interested in self-help through political activism. It
also could be an impetus for unity of purpose and effort
by the various national Parkinson's organizations and
could lead to absolute unity in the future. I attended a
pre-introduction breakfast in the Hart Senate Office
Building. There were several speakers: Joan Samuelson of
Parkinson's Action Network, Senator Mark Hatfield,
Congressman Fred Upton, Norma Udall, and Mark Udall. A
plea for unity among the various Parkinson's groups by
syndicated columnist Morton Kondracke ended the breakfast
with an upbeat feeling.
After the breakfast I sought out the official from the
National Parkinson Foundation to convey regrets from Mrs.
Janet Melvin, president of the Lower Delaware Support
Group, who had planned to join me at the breakfast and
lobby the legislators from Delaware. Janet had to stay
home to care for her mother who suddenly became ill the
day before. I found him and leaders of the other national
Parkinson's organizations in a conference room in Senator
Hatfield's office suite.
FIREWORKS!
After the breakfast, people scattered. Many had some
lobbying to do. I had some free time before my first
appointment, so I sought out the representative from the
National Parkinson Foundation. I found him and lots of
other "brass" from the national Parkinson's disease groups
when I was ushered into a conference room in Senator
Hatfield's office.
Salvatore Esposito [new American Parkinson Disease
Association president], Frank Williams [A.P.D.A. executive
secretary], Paul Smedberg [A.P.D.A. Washington
representative and lobbyist], Dinah Tottenham Orr
[Parkinson's Disease Foundation executive director and de
facto representative for the United Parkinson Foundation],
Rolf Ostern [Ostern Foundation president and de facto
representative for the Parkinson's Institute], Nathan
Slewett [National Parkinson Foundation chairman], Joan
Samuelson [Parkinson's Action Network president], Sue
Hildick and Megan Sexauer [Senator Hatfield's legislative
assistants], and Will Johnston [an uninvited but very
interested guest] were seated around a table.
The women were pushing for a unified effort to put
together a massive grass roots campaign. The invited men's
body language and lack of camaraderie said all was not
well. The N.P.F. and the A.P.D.A. top representatives
seemed particularly averse to working with anyone else.
The representative from the Ostern Foundation seemed
reluctant but willing to try for a unified campaign. Since
the biggest player in the room, the A.P.D.A., was not in
favor of even seriously talking about a unified effort,
the subject was dropped, and the ladies' faces fell.
I tried to rekindle the effort by mentioning that
Salisbury has the capacity to merge all the organizations'
mail data bases, eliminate duplications, and send a joint
letter and stuffers to the total mailing list in ten days.
Salisbury could be the neutral territory, and the combined
mailing list could be destroyed when it was no longer
needed for the legislative push. There was no interest
expressed by the major players.
It is disheartening for those of us with Parkinson's to
see our national leaders appear to be so protective of
their organizations that they are willing to forego what
many think is our best hope for the future.
Unification of the various Parkinson's organizations into
a single entity may or may not be in our best interest.
Friendly competition and not having all researchers
marching to the same drummer are probably to our
advantage. Speaking with one voice, loud and clear, on
the legislative front is imperative. Columnist Morton
Kondracke who has been on the Washington scene for thirty
years says we need to show unity of purpose and to speak
with one voice. Senator Hatfield's office stressed the
need for a unified voice and a concentrated effort.
On the positive side, it is nice to know that many people
such as Senator Hatfield and his staff are willing to help
us in spite of our family fights.
All of us with Parkinson's want to have a better life to
look forward to. There is only so much we can do for
ourselves. We try to help ourselves, but we need more. It
is in our interest, in the national interest, and in the
interest of all humanity to find an effective cure for
Parkinson's disease now.
A telephone conversation with Frank Williams April 18
confirmed the A.P.D.A. position. The A.P.D.A. is 100% for
passage of the Udall legislation, but firmly against any
cooperative effort by the various national Parkinson's
groups involving a merging of mailing lists. "We are for
the Udall Act, but business is business."
We who have Parkinson's appreciate what the national
organizations are doing for us, but feel that "business"
should not come ahead of medical progress. Maybe the
campaign for passage of the Udall Act will be a real grass
roots operation, people pushing for the legislation both
with and in spite of our national organizations.
Perhaps the national groups will be willing to work
together for the common good if we lobby them as well as
our legislators. All of us in the Parkinson's community
can benefit from increased federal spending for medical
research specifically aimed at finding the cure, and all
of us should be willing to work together!
ALTERNATIVE MEDICINE Our February meeting featured Dr. Ed
"Doc" Shaner, DDS of Ocean City, Maryland, and his
presentation on the natural or homeopathic products for
control of Parkinson's, general well-being, and longevity.
Doc Shaner made no claims for the various drugs
specifically for Parkinson's disease. He did point out
that anti-oxidants are thought to slow dopamine producing
neuron cell destruction or reduction caused by free oxygen
radicals. He likened our bodies to engines. An engine may
become clogged, have dirty sparkplugs, and run
inefficiently for thousands of miles. The engine develops
its problems so slowly that the driver does not even
notice. But, a tune-up can do wonders!
Specifically Doc Shaner mentioned: Co-enzyme Q-10 is
recommended for cardio-myopathy with dosage of 100 to
1,000mg per day. Lecithin in large amounts is good for
pain. Beta carotene, vitamin "C", vitamin "E", selenium,
DHEA metabolite, Pycnogenol, and chromium picolinate are
possible anti-oxidants. Omega-3 is recommended,
particularly for skin problems.
This very brief synopsis was delayed a month to find out
about a reported recommendation of Pycnogenol by Frank
Williams, Executive Secretary of the A.P.D.A., and receipt
of an audio tape and literature extolling the virtues of
Pycnogenol from a man in Staten Island. Later I received a
testimonial letter extolling the benefits of Pycnogenol
for Parkinsonians from the man in Staten Island written by
a lady with Parkinson's. I had met the lady last summer,
and she said she was a seller of natural remedies. I
called the man who sent me the material and asked him if
he was a dealer for Pycnogenol. He admitted to being a
"distributor like your executive secretary." According to
Doc Shaner, beware of exaggerated claims and consumer
sellers, particularly those with pyramid distributorships.
I spoke with our executive secretary about his apparent
endorsement and personal selling of the product at the
"fireworks!" meeting in Washington. He said he was a
distributor to friends and family rather than to
Parkinsonians. He told me he would _speak to_ his friend
and stop the use of his name in selling the product. Frank
Williams' health problems are heart transplant related
rather than Parkinson's disease related. The product is
not generally recommended for Parkinson's disease. There
is no such thing as a panacea. Drugs are like socks and
dresses. One size fits all is a lie.
The other thing "Doc" Shaner recommended is exercise.
Exercise is for everyone, but the types and amount will
vary with one's ability.
+++++++++++
INSERVICE PRESENTATIONS AVAILABLE
Upon request, I will present a program explaining what
Parkinson's disease is, how it is diagnosed, what the most
common symptoms are, how it is usually treated with drug
therapy and the likely side effects of drug therapy, what
alternatives there are to drug therapy, and what unusual
care (including diet) is needed by a Parkinson's patient,
including hints for caregivers. The presentation is made
by me as a Parkinson's support group member who is a Ph.D.
rather than a credentialed medical practitioner. I speak
from my experience and the experiences of others as well
as from "textbook learning." The content of program can be
geared to fit the needs of any particular audience.
No one knows all there is to know about Parkinson's.
Several hundred new _learned_ articles appear in medical
journals every year. Research is being done in many
countries of the world. The cause of most Parkinson's is
not known. There is no diagnostic laboratory test which
will confirm or refute a visual diagnosis of Parkinson's.
There are many cases which go undiagnosed for years, and
some diagnoses of Parkinson's are in error. There is
disagreement in the medical community as to what the best
treatment should be for the average Parkinson's patient,
and no one is average. I have never seen two Parkinsonians
with the exact same set of symptoms at the same time. The
presentation is aimed at explaining the most widely
accepted theories and practices of treatment and care.
Handouts and printed brochures will be provided. There is
no charge for this program in Delmarva.
(in 5 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. The only sure thing in life is change _except
from vending machines. (in 23 point cursive) The only way
to keep your health is to Eat what you don't like, Drink
what you don't want, and Do what you'd rather not.
Puddinhead Wilson (Mark Twain) (return to 11 point CG
Times) VISION PROBLEMS AND PARKINSON'S DISEASE Our next
support group meeting will feature Dr. Gary Rubin, Ph.D.,
Associate Professor of Ophthalmology, Johns Hopkins Wilmer
Eye Institute in Baltimore. Although Parkinson's is a
disease of the brain, it effects the whole body and our
senses in various ways. Our medications also have side
effects. The interaction between Sinemet and glaucoma has
been known for years, but the effect of Parkinson's itself
on vision is just starting to be understood. We often have
reduced spatial contrast sensitivity [the ability to
distinguish form with different degrees of contrast
between what is being looked at and its background]
compared to the general population, and ophthalmologists
in Salisbury do not test for this. We may have difficulty
moving our eyes from the end of one line of type to the
beginning of the next or controlling eyelids thanks to
reduced muscle control. A dose of Sinemet changes my
visual acuity. A very recent issue of Neurology reported
that newly diagnosed Parkinsonians have a reduced ability
to differentiate color hues. A unique solution to
balance-walking problems connected to Parkinson's and
vision was shown on People in Motion [PBS
(Ch28-Salisbury)] at 9 pm April 14. We in Salisbury are
fortunate. We have the SEE program working for our senior
citizens, and the first low vision assistance device
produced for Wilmer is being used by a Salisbury school
child.
VISION AND PRINT The Parkinson's Newsletter uses several
_tricks_ for ease in reading. The body of most articles is
printed in 11 point [type 11/72nds of an inch tall] CG
Times [a typeface with small decorative marks called
serifs on ends of letters to guide the eye from one
character to the next], proportionally spaced [W and M
take more space than i,l,f, and other characters], using
upper and lower case letters. The paper is 90 brilliant
which is whiter than average. The type you see is composed
of dots heat transfer printed on the paper with a density
of 360,000 dots per square inch. This density makes very
sharp, very black letters, which do not bleed through and
provide high contrast on the whiter than average paper.
The newspaper columns make eye movement from the end of
one line to the beginning of the next easier. More empty
white space would make for easier reading but use more
paper. I hope you can read this without glasses. Note: The
_disclaimer_ is 5 point type.
DR. STEPHEN REICH (Director, Parkinson's Clinic, Johns
Hopkins) DATE CHANGED TO FRIDAY, MAY 26 AT 1:00 With a
mix-up on Johns Hopkins' graduation day date, mixed
signals between me and Coordinator Paula Goldberg, a
shortage of space for a sit-down lunch thanks to new
exercise equipment at Chesapeake Rehab. Hospital, and
pending sale of NovaCare which owns Chesapeake Rehab., the
firm time for Dr. Reich's annual presentation is now May
26 at 1:00. Erase your calendar note on the 25th and write
in the 26th.
-30-
The Parkinson's Newsletter of the Delmarva Chapter of the
American Parkinson Disease Association is published 10
times per year by Will Johnston, chapter president. The
circulation (April, 1995) is 496 copies, and currently
domestic circulation is without charge. Hardcopy
distribution by 3rd class U.S. mail 496 this issue. A few
local notes have been edited out for INTERNET posting.
