OF INTEREST TO ALL: VISIT TO A.P.D.A. NATIONAL OFFICE
A TIP ON BUYING PRESCRIPTION DRUGS
PHYSICAL THERAPY RESEARCH
PARKINSON'S ON THE INTERNET
OF REGIONAL INTEREST: SYMPOSIUM AT BALTIMORE WASHINGTON INTERNATIONAL
OF LOCAL OR PERSONAL INTEREST: LUNCHEON
CAREGIVER MEETING IN BERLIN, MD
PALLIDOTOMY PATIENT TALK IN SALISBURY
PARKINSON'S NEWSLETTER [509 COPIES BY BULK SNAIL MAIL]
of the Delmarva Chapter, American Parkinson Disease Association
September 1996 - 4049 Oakland School Road Salisbury, Maryland 21804-2716=
=20
1-410-543-0110 FAX (410)749-1034 e-mail [log in to unmask]
A VISIT TO A.P.D.A.'S
HOME OFFICE
After driving to New Brunswick, NJ, to see my neurologist in the Entacapone
drug trial, I drove a few more miles to see what the American Parkinson
Disease Association home office looked like. It is in Staten Island, New=
York,
only a couple of interchanges on the New Jersey Turnpike and a very few=
miles
into New York. It would have been even fewer if I had not made a wrong turn
and gotten tangled up in road repair.
Twelve fifty Hylan Boulevard, Suite C, Staten Island, was not what I=
expected.
Hylan Boulevard looks big on the maps, and it is on one end. The A.P.D.A. is
on the other end. I came to the intersection of Hylan Boulevard and=
Parkinson
Avenue and looked for an office building big enough to have a Suite C. I
didn't see one, so I parked by an old cemetery on Parkinson Street and
searched on foot. I found it! Twelve fifty Hylan is a small group of
neighborhood stores with the A.P.D.A. upstairs.=20
There is a pet shop directly under the A.P.D.A. offices with the ominous
sounding name "Shake Paws."=20
The second floor is accessible by a small elevator or outside stairs. I took
the stairs. The front door was locked, but there was a sign directing=
visitors
to ring the bell to come in. I rang the bell and was quickly let in. I was
welcomed and made to feel =FEright at home.=FE The few employees were=
eating bag
lunches in the back. A probably very junior lady auditor from a major=
national
accounting firm was making an audit. The furnishings were adequate but
spartan. There was a room with glass doors for walls where ALL mail is=
opened
with at least three people present.
I felt that our contributions were not being squandered on extravagant=
offices
or furnishings. There are probably few visitors to the home office, and=
there
is no need to put on a fancy show. Almost all association business is=
handled
by mail or telephone.
I was told that having the closest cross street being =FEParkinson Avenue=FE=
was
purely accidental. "Shake Paws" was certainly not on purpose.
PRESCRIPTION BUYING TIP FOR SAVING/SAFETY
When you present a prescription to your pharmacist, you are usually asked if
you want the medication in a child-proof or a regular container. There is a
third choice with most medications which may be to your advantage.
Ask to have the prescription filled in the stock bottle=FEthe bottle in=
which
the pharmacy received the medication. This has several advantages.
There is less chance of a mix-up each time a product is not handled. The=
stock
bottles provide superior protection for the particular medication since they
are chosen by the drug manufacturer to preserve the potency and thereby=
extend
the product's shelf-life. The prescription labels provided by the pharmacist
usually say to discard the product exactly one year after it was dispensed.
Shelf life varies widely from medication to medication, and the usual buyer
has no idea how long the medication has been held by the pharmacy, the
wholesaler, or the manufacturer. The stock bottle has the expiration date
assigned by the manufacturer. The pharmacy label may cover it, but it is
there. Don't throw out perfectly good drugs you may need again if you don't
have to. This may also discourage a pharmacist from dispensing a product=
near
or after an expiration date. The expiration date presumes careful storage in
the stock bottle.
Stock bottles reduce the chance of a mix-up at home. A pharmacist will use=
the
same type pill bottle to fill hundreds of different prescriptions. The stock
bottles are more nearly unique to a particular medication, and many have
identifying colors.=20
Many physicians ask that you bring your medications with you to your next
visit. The stock bottle is more easily identified by health care providers
too. Stock bottles have a batch or lot number. If a problem is found in a
particular batch, the number is there.=20
This may not be practical for small size prescriptions or where child-proof
containers are indicated.
U.M.E.S. PHYSICAL THERAPY RESEARCH
The research project undertaken by graduate students in the University of
Maryland, Eastern Shore is progressing. Several of us have been evaluated in
our homes by the students and their teacher. The evaluation is a one morning
meeting. The evaluation protocol requires the PD patient to skip Parkinson's
medications in the early morning of the evaluation day, be evaluated by the
instructor, perform [or try to perform] a few everyday tasks such as dialing=
a
telephone, brushing one's teeth, writing a sentence, sitting down, standing
up, and walking across the floor. Then the patient takes his usual=
Parkinson's
medication. After the medication has "kicked in," the whole evaluation is
repeated. The students bring the chair, the telephone, and a brand new
toothbrush. So that the session may be carefully studied and to save time,=
the
entire sequence is video taped.
The whole evaluation takes only about two hours, possibly less if you come=
on
quickly after taking your PD medications, maybe a little longer if your=
system
is slow to respond to your medications. The Sinemet CR is slower than the
regular Sinemet or the generics. Everybody is a little different, so precise
timing is not possible.=20
This study has two distinct purposes. One is to see how much difference=
there
is from the physical therapists' point of view at initial evaluation time
between us when we are =FEon=FE and us when we are =FEoff.=FE This could=
result in a=20
reduction of mistakes in the evaluation process for physical therapists and
their patients all over the world. The second purpose is more mundane. The
students want to successfully finish their studies at U.M.E.S. and get out
into the business of being practicing physical therapists.
Being a participant in the study will probably not be of immediate value to
you personally since there is no follow-up physical therapy, but it may be=
of
considerable value to Parkinson's patients all over the world for years to
come.
There is no cost other than a little time. For more information call me or
call Jim Cope [one of the graduate students] at 410-742-1012.
PARKINSON'S ON THE INTERNET
Most people with Parkinson's disease are not computer literate. Our average
age at diagnosis is almost 60. The so-called Parkinson's personality=
typically
includes reticence and an unwillingness to take risks or be =FEnovelty=
seekers.=FE
Most of us lack the dexterity needed to play many of the computer games so
popular with school age children. Our age, our physical ability, and our
personalities make computers less attractive and more frightening, but there
is a growing number of us in on-line Cyberspace, the universe of the=
computer
and the Internet. The senior citizen population is the fastest growing group
percentage-wise in the computer-user field today.
The amount of information now on the Internet about Parkinson's disease and
practically everything else is amazing and seems to be growing almost=
hourly.
The National Parkinson Foundation has a sizeable Web site on the World Wide
Web [WWW]. I ordered some educational material from them while on line. A
hospital in Massachusetts and Harvard maintain an extensive Parkinson's
disease information file. There are hundreds of articles and book chapters=
on
Parkinson's. There are even sample MRI and PET scan pictures and
interpretations on-line. The American Medical Association maintains a=
650,000
name list of physicians together with their specialties, which medical=
school
they were graduated from when, and where they did their residency. Rather=
than
calling my neurologist in New Jersey, I e-mail her a note and get an answer
back generally within a day.
The Internet also serves as a support group for many with Parkinson's. A
Toronto, Canada University [McMasters at University of Toronto] maintains
<[log in to unmask]>, which has over 1,300 subscribers scattered
all over the world. The subscription is free, and there is no magazine. All=
of
us receive many pieces of e-mail daily from each other asking questions,
answering questions, posting news articles, or just visiting. Yes, Parkinson
is misspelled, but the Internet prefers site names with fewer than nine
letters. Perhaps we can have an Internet demonstration in the spring.
LUNCH SOCIAL SATURDAY SEPTEMBER 21 GOLDEN CORRAL IN SALISBURY AT 11:30=20
PRIVATE DINING AREA RESERVED FOR CHAPTER
The Golden Corral restaurant has reserved for us a portion of the dining=
room
which will be curtained off for privacy. We will have the buffet lunch which
will include fried chicken, shrimp, beef stroganoff, ham, various=
vegetables,
salad, dessert, and a beverage. We can go through the buffet or, if needed,
have a plate served to us.
We have the closed-off dining area reserved for us from 11:30 till 4:00, but
we will gather about 11:30, serve ourselves about noon, and probably finish=
up
visiting around 2:00. We have the space reserved for a longer time if we=
want
it. There is no formal program, but there are some news and announcements.
Good things are happening in Washington on the increased funding for
Parkinson's medical research. We are not quite ready to count the money, but
it is close. We have over half of the Senate and over half of the House of
Representatives officially listed as co-sponsors of the Udall bill.=20
You will be a guest of the chapter. Chapter finances are in sufficiently=
good
shape to allow the chapter to be the host for the buffet lunch. The Golden
Corral restaurant is located at 1315 Mt. Hermon Road=FEthe northwest corner=
of
Mt. Hermon and Beaglin Park just off Route 50 on the eastern edge of
Salisbury. There is a fair amount of handicap parking. Enter the door facing
Mt. Hermon. A sign will be posted.(No reservation is required, but the=
Golden
Corral would like to know about how many to expect. Give me a call at 543-
0110.)
MARYLAND SYMPOSIUM
NEAR B.W.I. OCTOBER 5 The 1996 biennial Maryland Parkinson's symposium Back=
to
the Future and luncheon will be at the Marriott Hotel near the Baltimore-
Washington International airport Saturday, October 5, starting at 9:00 a.m.
and officially ending about 4:20 p.m. The official program is not available
yet, but it will be coming from the printing company shortly.
The keynote address, Parkinson's Past, Present, and Future, will be=
delivered
by Dr. George Paul Paulson of the Ohio State University Hospital. The=
program
will include a humor therapy expert and a panel discussion with various
support group leaders. Most of the other presentations will be made by Johns
Hopkins staff members including Drs. Reich, Dawson, George, and Lenz. There
will be several booths operated by drug companies and other suppliers whose
products may be attractive to Parkinson patients or caregivers.
The cost of the symposium including lunch, two coffee and pastry breaks, and
some materials will be $25 per person if reservations are made by September
15. There are a few full or partial scholarships available for those who
cannot afford the cost but still want to attend. Call me for details.
We will probably have a carpool from the shore, but arrangements have not=
been
formalized. We considered chartering a plane or a bus two years ago, but
carpooling seemed far more economical and workable.=20
MORE ON THE B.W.I. SYMPOSIUM
The Marriott Hotel is located near the intersection of W. Nursery Road and
Elkridge Landing Road. The easiest way to drive there from the Eastern Shore
is to take Route 50 to I97, turn west onto Dorsey Road (Route 176) to=
Aviation
Boulevard (Route 170), turn right on Aviation Boulevard, pass the I95 exit,
turn left onto Elkridge Landing Road, and right onto W. Nursery Road. The
Marriott is on a hill to your right. This takes you more than half way=
around
Baltimore-Washington International, but I think it is the surest way. Think=
of
it as the scenic route.
Reservations should be sent to:
HOWARD COUNTY PD SUPPORT GROUP, P.O. BOX 2243, ELLICOTT CITY, MD 21041
Checks should be made payable to:
HOWARD COUNTY PD SUPPORT GROUP
Brochures are being mailed from the Western Shore and will probably reach=
you
in the next few days. If you do not receive a brochure and want one, give me=
a
call.
REGULAR MEETING OCT. 29 AT A.G.H. IN BERLIN
The regular October meeting will be at the Atlantic General Hospital in=
Berlin
at 1:00 on Tuesday, October 29. Our scheduled speaker will be Paula=
Goldberg,
RN, nurse coordinator for the Parkinson's clinic at Johns Hopkins Outpatient
Center. Ms. Goldberg's talk will center on the caregiver's problems. An
effective caregiver needs to recognize his or her limitations. The=
caregiver's
health is important too! More details will be in the October Parkinson's
Newsletter.
NOVEMBER 26 MEETING AT ASBURY METHODIST
Our regular November meeting will be held at Asbury Methodist Church, just
south of Salisbury State University on Camden Avenue in Salisbury.
Mr. Nicholas Nieberding, one of our group, will tell us about his=
pallidotomy
operation at Johns Hopkins and what the operation has done for him.
Dr. Fred Lenz who performed the operation will be one of the speakers at the
October symposium. It will be interesting to hear from both parties to the
operation - or, as Nick might say, =FEboth ends of the Black & Decker.=FE
Pallidotomy results seem to be improving as neurosurgeons get more=
experience
doing the operation. =20
A
DISCLAIMER (in 5 pt 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. There are three
kinds of people in this world: those who can count and those that can't.
Will Johnston
=1A
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
