PARKINSON'S NEWSLETTER of the Delmarva Chapter, American Parkinson
DiseaseAssociation March 1997 - 4049 Oakland School Road Salisbury,
Maryland 21804-2716 1-410-543-0110 FAX (410)749-1034 e-mail
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GENERAL NEWS: BRIGHT LIGHTS & THE INTERNET
HEALTHCARE TRAITS OF PD PATIENTS
UDALL BILL TO BE REINTRODUCED
REGIONAL: APRIL DECLARED PD MONTH IN MARYLAND
NEW FRONTIERS - A PD CONFERENCE TO BE HELD IN
CHARLOTTESVILLE, VIRGINIA
LOCAL: MEETING TUESDAY, MARCH 25, IN BERLIN, MARYLAND
SYNOPSIS OF JANUARY MEETING
GIFTS & MEMORIALS
DICK HINMAN - OBITUARY
BRIGHT LIGHTS & INTERNET -BRIGHT LIGHTS AND THE INTERNET DON'T MIX
The February meeting at the IC-NET met with mixed success. We were the first
group to meet in their facilities at the Cyber Cafe. It was a learning
experience for us and for IC-NET.
The information on the Internet was there, but it was difficult to read the
information on the projection screen. The system had been ~checked out~ the
night before. Everything looked good, but bright sunlight, fluorescent
lights on the same switch as the power for the computers, and the sun's
reflection off the windshield of a car parked a half block away combined to
obliterate text on the projection screen provided by IC-NET. One of the
symptoms of Parkinson'sis decreased visual contrast sensitivity, and that is
the exact problem we had.
The ~hands on~ session of the program worked far better. IC-NET had a bank
of individual computers with their own screens hooked into the Internet.
Using special computer programs such as Yahoo, AltaVista, or Explorer known
as ~search engines,~ a person may enter a word or phrase from the keyboard
and find material containing that particular word or phrase. It is possible
to find information on almost any facet of any subject. On many subjects
there is more information than most people want, and there is no guarantee
that the information is accurate.
There may be surprises too. Parkinson is a good English name. In addition to
Parkinson's disease (named for James Parkinson), the search will also reveal
information about Parkinson's Law (named for Northcote Parkinson) that is a
humorous collection of business/government sayings. Articles vary from very
elementary descriptions of Parkinson's disease to highly technical treatises
on some very specific facets of Parkinson's. There are also probable
charlatans pushing unproven treatments and medications which are supposed to
relieve all sorts of Parkinson's and Alzheimer's symptoms.
Parkinson is also the last name of Dianne Parkinson, a shapely Playboy
bunny, whose picture in scanty attire appears with an offer to sell her
pictures without the scanty attire. Just being on the Internet does not
guarantee anything.
The IC-NET's Cyber Cafe came through with delicious coffee and pleasant
atmosphere for our February meeting. Last week I ordered my fourth computer,
a new computer to replace the six-year old computer I'm using now. With
changes in technology, the new computer will be about twenty times faster
than the third one I have now. The one I have now is about twenty times
faster than the second computer which it replaced. The second computer was
almost ten times faster than the first computer I bought in 1978. I wish the
technology for fighting Parkinson's would advance that fast. After I get the
new one broken in, I may bring it to one of the meetings in Berlin.
HEALTH CARE TRAITS OF PD PATIENTS
Since the 1960's when L-dopa became available for symptomatic management of
Parkinson's disease, PD patients can expect to live a near normal life span.
This means that they have to contend not only with PD, but also with other
chronic conditions and age-related disabilities, many of which are
preventable through personal health behaviors and risk reduction.
"Health Maintenance Behaviors in Advanced Parkinson's Disease" by Gwyn M.
Vernon, RN, MSN, CRNP, Director of Clinical Operations at Crozer-Keystone
Center for Family Health, and Melinda Jenkins, RN, PhD, CRNP, assistant
professor in primary care at the University of Pennsylvania School of
Nursing, describes the health maintenance and disease prevention behaviors
of a group of patients with Parkinson's disease who were surveyed in support
groups in suburban Pennsylvania and in Delaware. Gwyn Vernon is the
daughter of Janet Melvin, who ran the Harrington, DE, support group and is
still an active member, and I visited that group to be one of the
participants. The study that resulted in this article was part of Gwyn's
training requirements to become a nurse practitioner. On the whole, PD
patients behave in a way similar to their non-PD peers when it comes to
general health maintenance. Compared to the U.S. statistics for 1990, PD
patients were above the national averages for use of primary health and
dental care, healthy behaviors like exercise and use of seat belts, adult
immunizations, and screening tests. The one exception is the use of Pap
smears, which was below the national average.
However, PD patients, like their non-PD peers, need to improve their health
activities to meet the United States Health Goals for the Year 2000. The
recommendations especially noted for PD patients are
~to continue with primary health care which will help obtain screening
tests on a regular basis
~find appropriate physical therapy and rehabilitation services to increase
the level of exercise
~to use seat belts
~to chart important family health information for guidance in seeking
appropriate health activities
~to understand the risks of falls and fractures and how to avoid them
~to get an annual flu vaccination and periodic pneumococcal vaccinations.
Because of our PD, most of us do stay closely in touch with medical
professionals and reap those advantages. Exercise is both especially
necessary and especially difficult for us, and several of us on Delmarva
have been guinea pigs for the University of Maryland, Eastern Shore physical
therapy students, who are working on research to determine the physical
therapy needs of people with PD.
Because PD patients already have mobility problems, perhaps we are
especially sensitive to the restraints of seat belts. Nevertheless, we,
like the rest of the nation, need to use them.
Compared to the non-PD population, fewer PD patients get cancer, the same
percentage get diabetes and heart disease, and more have strokes, so family
medical histories are important to us for health screening and guidance.
But, PD patients are three to four times more likely to die of pneumonia and
flu than our peers without PD, so be sure to get those annual flu
vaccinations and periodic pneumococcal vaccinations.
Attitudes and beliefs are important too for maintaining health. We must
perceive ourselves as vulnerable, we must believe in the effectiveness of
good-health habits, we must make ourselves aware of what health services are
available to us and how to obtain them, and we should interact with others
in giving and receiving cues and information for personal well-being.
THINK HEALTHY!
ACT HEALTHY!
BE HEALTHY!
APRIL DECLARED PD
MONTH IN MARYLAND
Governor Parris Glendening has proclaimed April
1997 as Parkinson's Disease Awareness Month in
Maryland, joining with Virginia and Maine.
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. Our income from employment is often
reduced or stopped. Our medical expenses over
the percentage of income deductible as deductions
may reduce income taxes. We probably use state
facilities more than the average citizen as a result
of our Parkinson's disease, and Medicaid is paid
for with state and federal funds.
Alabama has gone a step further in recognizing
Parkinson's disease by making Parkinson's
medical research a $50,000 state budget line item.
This budget item was made following the former
governor's illness being diagnosed as Parkinson's.
With the possibility of finding the cause of and a
cure for Parkinson's just a few more dollars of
research money away, we think it is in the
governments', both state and federal, best interest
to increase medical research funding specifically
targeted for Parkinson's.
I do not know exactly who is responsible for
having Virginia, Maine, and Maryland officially
recognize our problem. We owe thanks to them
and their states.
Although I have not received official notification
of the Maryland action yet, a note of thanks to
Governor Glendenning from those of us on the
Eastern Shore would be appropriate. I plan to
bring a master thank you note to our March
meeting in Berlin.
NEW FRONTIERS, AN APDA VIRGINIA PROGRAM
The Information & Referral Center of Virginia will present ~New Frontiers:
Emerging Therapies for Parkinson's Disease,~ a one day Parkinson's
conference to be held at the Sheraton Hotel in Charlottesville April 5. It
will have speakers from the University of Virginia (strong on inherited
mitochondrial causes and basic research), the Medical College of Virginia
(in the news recently with patch therapy for PD), the Eastern Virginia
Medical School (middle of the road on PD and strong on fertility), and Paul
Smedberg to push the Udall bill. The $15.00 registration covers admission,
handouts, and lunch. Registration deadline is March 28. You may call Miriam
Hirsh at 804-982-4482 for more information. It would be nice if we had a
~middle bridge~ to jump the Chesapeake. It would make Charlottesville much
closer.
UDALL BILL TO BE REINTRODUCED IN APRIL
The Udall Bill to provide specific funding for Parkinson's disease research
will be introduced in both the House and Senate in April. The exact date is
not certain. Senator McCain of Arizona has taken over the bill's leadership
in the Senate following the retirement of Senator Hatfield.
Congressman Upton of Michigan is providing leadership in the House. Both
Maryland senators and Biden of Delaware have provided support for us in the
past. Congressman Wayne Gilchrest has also supported our cause.
This will be our third try. The first was started too late to have much
hope for passage. The second passed unanimously in the Senate as a part of
the National Institutes of Health Revitalization Act, but our cause never
reached the House floor in spite of our having a majority of the House
members as cosponsors. I will provide you with House and Senate bill numbers
as soon as they become available. The third time should be a winner!
MEETING TUESDAY MARCH 25 AT 1:00
ATLANTIC GENERAL HOSPITAL IN BERLIN
WE MEET UPSTAIRS THIS MONTH
Our March speaker is Sandy Wabeck, VolunteerCoordinator for Coastal Hospice
and Home Health. She will describe the newly expanded services of what used
to be Coastal Hospice and is now Coastal Hospice and Home Health.
Most of us are at least somewhat familiar with services provided by Coastal
Hospice to the terminally ill and their families. Recently Coastal Hospice
has increased its services to include home health patients who have not been
diagnosed with a terminal illness. Ms. Wabeck is eager to explain just what
her agency can now provide to our community, which in December 1996 expanded
to include Dorchester County with the original three Lower Eastern Shore
counties of Wicomico, Somerset, and Worcester.
NOTE: We will meet on the second floor of Atlantic General Hospital in the
long term care dining room, not in the first floor conference room. Take the
elevator to the second floor. Signs will be posted.
To get to Atlantic General from Salisbury, take US-50 toward Ocean City. Do
not take Route 90. Turn south on Route 113 after passing exits to Berlin and
Maryland Highway Patrol office. After entering Route 113 immediately get in
the center lane. Turn left at the traffic light and left again into the
first street on your left. Atlantic General Hospital is the last building on
your left. We should finish about 2:15 - 2:30 after visiting over soft
drinks and cookies.
JANUARY MEETING WITH MARTY YATES
Our January meeting at Atlantic General Hospital in Berlin featured Mrs.
Marty Yates, Senior Information Assistant of the Worcester County
Commission on Aging. The information she gave us was specially for Worcester
County, but the same principles and many of the same agencies apply in other
counties and even other states.
The commission provides medical transportation for those disabled or over 60
on three day's notice for $4.00 round trip. There are ~meals on wheels~ for
those who cannot get out for a donation of $1.25. There are senior centers
with transportation in Snow Hill, Pocomoke, Berlin, and Ocean City. There is
an adult medical day care center in Snow Hill. There is a daily bus betweeen
Pocomoke and Ocean City.
Mrs. Yates discussed property tax credits and rent rebates for the elderly,
pharmacy cards, in-home aid service, Senior Care, energy assistance, medi-
gap insurance, availability of free legal assistance and income tax help,
some pitfalls in estate planning, and coordinating VA benefits. Mrs. Yates
may be reached in Snow Hill at 410-632-1289.
GIFTS AND MEMORIALS
A memorial gift in remembrance of Mrs. Phyllis Giordano was sent to us by
Chris & Bill Healey and family.
A gift was received from Bob Swanson of Puyallup, WA.
RICHARD HINMAN
Richard Hinman of Salisbury died following multiple bypass heart surgery.
Dick had Parkinson's disease for a number of years. He was the first from
this area to try the pallidotomy surgery, but his was not successful. Our
sympathy goes to his wife Delores and others in his family.
DISCLAIMER
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. We always proofread this newsletter to be sure we not left
anything out or mispelled sometheng.
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
