PARKINSON'S NEWSLETTER
of the Delmarva Chapter, American Parkinson Disease Association
January, 1998 - 4049 Oakland School Road Salisbury, Maryland 21804-2716
410-543-0110
e-mail [log in to unmask]
Contents: Dopamine Agonists
Genetic Rresearch
Jim Maurer on Porcine brain tissue implants
Udall Bill passage and thank yous
State/area interest: Ms. Becky Dunlop new Johns Hopkins I&R Coordinator
Silverman Voice Treatment Program at January 27
meeting
R T Twigg obituary - Memorials- Snow policy -
Feb meet date
Disclaimer
THE NEW DOPAMINE AGONIST DRUGS
MIRAPEX & REQUIP
During 1997 two new drugs for Parkinson's disease were approved for use by
the F.D.A.
Both new drugs are dopamine agonists [helpers for dopamine or dopamine
imitators rather than
dopamine providers] not derived from ergot. They will compete primarily
with each other,
Parlodel(bromocriptine), and Permax(pergolide). Parlodel and Permax are
ergot derived agonists
which have been used for years. To the extent they reduce dopamine need,
they will compete
with Sinemet. The first to appear was Mirapex(pramipexole) made by
Swedish-American Pharmacia & Upjohn, Inc. and marketed in the U.S. by a
group of German companies trading under the name Boehringer Ingelheim
Pharmaceuticals, Inc. The press release by the drug companies stated it was
not a large product for them and should develop annual sales from $100
million to $150 million. The press release added that side-effects, such as
nausea, dizziness, drowsiness, or hallucinations may affect some people
taking the drug. Other side-effects reported on the internet include
headaches, dyskinesia, leg pains, weight loss (by a vegetarian), paranoia,
and hypotension. This is a short list of side-effects for this type
medication. Most users praised
Mirapex. Many said it reduced their fatigue substantially and reduced ~off~
time. Many said
they slept better. Many said they had to reduce their Sinemet intake. The
highly dyskinetic
Parkinson's patient we saw experimenting with virtual reality on video tape
(Discovery Channel)
said he had been able to function well with no Sinemet for three days and
counting. Getting the
dose right seems to require trial and error. The guide provided by the
manufacturer recommends
.125mg three times a day for week #1, .25mg three times a day for week #2,
and .5mg three
times a day for week #3. If a higher dose seems appropriate, .75mg three
times a day for week
#4, 1mg three times a day for week #5, up to a total of 4.5mg per day in
week #7. Many report
no improvement until the dose reaches a total of 1.5mg per day. Several
users who stopped taking Mirapex reported extreme fatigue when they stopped
abruptly. One former user reduced the dosage incrementally to zero with no
ill effects. One happy user said, ~I think Mirapex is the best stuff to
come along since sliced bread.~
Requip(ropinirole) made by SmithKline Beecham was approved by the F.D.A. in
late September. It seems to have fewer side-effects reported than Mirapex
so far and fewer glowing laudatory
reports. Stomach problems and hypotension are the primary side-effects. One
user's gall bladder
was about to be removed until his wife noticed that his stomach pains got
worse as Requip
dosage was increased. Tightness in the chest and increased ~off~ periods
were reported by some
still on low initial Requip dosage. Almost universally, users reported that
benefits were slow
in coming. One English researcher is quoted as saying low doses shut down
dopamine cells.
SmithKlein Beecham recommends .25mg three times a day week #1, .5mg three
times a day
week #2, .75mg three times a day week #3, and 1mg three times a day week
#4. On January 12
SmithKlein Beecham reported studies which found Requip to be better than
Parlodel and equal to Sinemet in the earliest stage of Parkinson's.
PD GENE IN ITALIAN
FAMILY SEEN IN OTHERS
The gene abnormality which apparently causes
Parkinson's disease in one large predominately
Italian family has been found in two other
unrelated families. For a while it seemed that the
particular gene sequence was in that one Italian
family only.
The two other families have apparently not been
sufficiently researched to determine whether or
not the particular gene abnormality caused
Parkinson's in those families. Not everyone with
that particular abnormality develops Parkinson's.
The gene has also been found in rodents whose
life span is probably too short for Parkinson's to
develop. Finding this gene in rodents can make
research go much faster since they can take our
places in biological testing and experimentation.
The defective portion of the gene produces a
protein called alpha synuclein. Nobody has
figured out what alpha synuclein does yet, but
researchers are trying. They have found that it
replaces the amino acid alanine in the amino acid
threonine at the fifty-third position of that long
string protein. Sound simple? Not to me. It does
provide a place to start from in the search for the
cause and cure for our problem. Until now, there
was no real stepping off place in the search at the
sub-cell level. The searchers are also looking at
the closely related beta synuclein gene which
could be a cause for Parkinson's and at other
genes which may contribute to the various
complications linked to Parkinson's such as
hallucinations and depression. At the present time
some researchers at Robert Wood Johnson
Medical School are making antibodies to alpha
synuclein to see how the regular threonine works
compared to threonine with the mutant protein.
Most of us find this totally incomprehensible, and
it was far beyond the comprehension of the best
of researchers just a few years ago. College
courses of the 1960's and the 1970's never got
into anything like this, at least at the
undergraduate level. This is exciting stuff to
researchers, and we wish them well in their
search. Giant step advances may be just around
the corner for us instead of being only for the
next generation.
JIM MAURER'S TALK AT
NOVEMBER MEETING
Those unable to attend our meeting with Jim
Maurer in Berlin missed a real treat. Jim is a
Parkinson's patient himself, an A.P.D.A. director
and Northeast Area Chapter Representative,
President of the Massachusetts Chapter, and a
frequent observer in Parkinson's neurosurgery.
He was present as an observer for several pig
brain tissue implants into Parkinson's patients in
the Boston area and, at the invitation of the
Cubans, attended Parkinson's neurosurgery in
Havana.
The pig brain tissue implants seem to be working
and may replace the human fetal tissue implant
operation which has caused so much controversy.
A report posted on the internet earlier this month
by a pig brain tissue recipient indicated that he
was doing well and continuing to improve based
upon his own evaluation and evaluations by
neurologists. This may be the Parkinson's surgery
of the 21st century.
Jim's presentation was definitely positive and
encouraging. The research efforts in the Boston-
Cambridge area seem to be getting less publicity
than that in other sections of the country. Maybe
we expect more from the people at Harvard, so a
research success there is considered an everyday
event and therefore not given the press coverage
it would get elsewhere.
Jim is doing well himself. Although he has almost
retired, he is still producing small quantities of
mail-order personalized pet identification tags at
home. He is very active in the American
Parkinson Disease Association and is working to
make the organization more responsive to the
needs of the Parkinson's patients and their
families. He is one of the two most active
members of the A.P.D.A. Board of Directors
who have Parkinson's.
We appreciate Jim's coming to the Eastern Shore
to speak to our group - and to have a taste of the
blue crabs we are famous for.
UDALL BILL SIGNED INTO
LAW BY PRESIDENT
The Morris K. Udall Parkinson's Research and
Education Act as an amendment to the
Appropriations Bill for the Departments of Labor,
Health and Human Services, Education, and
Related Agencies is now law.
The Udall Bill is an authorization to spend up to
$100 million for Parkinson's Disease Medical
Research. Unfortunately this does not mean that
the National Institutes of Health automatically
gets $100 million earmarked for Parkinson's
research immediately.
The money must come from the federal budget
for 1999 which has not been finalized. A letter to
President Clinton was circulated among the
sponsoring senators asking him to put the entire
$100 million in as a budget line item by itself.
I feel certain that we will get most or all of the
money authorized. The checks and balances built
into our government seem ponderous and
unnecessary when it is our research money that is
at stake. The slow deliberate process is designed
to prevent fraud and waste in our system of
government. It's sort of like traffic lights. I don't
like the red ones when they tell me to stop. It
would be nicer for me if the red ones just applied
to other people. I know they are necessary for
safe use of our streets, so I stop for all the red
ones - and a few green ones from time to time by
mistake.
Letters were sent thanking Congressman Gilchrest
and the six DelMarVa senators for their help in
sponsoring and passing the Udall Bill. We
appreciate what is being done for us.
MEETING 1 PM, TUESDAY, JANUARY 27 AT
ASBURY METHODIST CHURCH IN SALISBURY
JAN. MEETING ON VOICE
TREATMENT PROGRAM
The Lee Silverman Voice Treatment Program
is now available on the Eastern Shore at both
Peninsula Regional Medical Center hospital and
at HealthSouth's Chesapeake Rehabilitation
Hospital. The Silverman Program is designed
specifically for Parkinson's patients and is a
structured system which can be tailored to fit the
needs of individual patients. This is a system I
have seen praised by Parkinson's patients all over
the world.
We are fortunate to have as our speakers Ms.
Tina Craft of P.R.M.C. and Ms. Susan Johnson
of Chesapeake Rehab. Both of our speakers are
speech therapists trained to administer the
Silverman program.
The program is not a ~one visit~ instruction
session with exercise instructions for you to
follow when you get home. It usually requires at
least sixteen sessions over a minimum of four
weeks. There is homework. This requires a
commitment of substantial time and a desire to
improve or maintain speech capabilities, but the
rewards may be considerable. There is no
guarantee, but the success rate has been extremely
high in most centers.
The program requires a prescription for speech
therapy from your doctor and an initial laryngeal
medical examination to determine if there are any
structural abnormalities of the mouth or vocal
cords not related to Parkinson's.
This speech therapy is a medical expense and is
generally covered by Medicare and by many
private medical insurance and managed care
systems.
JOHNS HOPKINS NEW I&R
CENTER COORDINATOR
Ms. Becky Dunlop, R.N., B.S.N., is the new
Nurse Coordinator for the Parkinson's Disease
Center at Johns Hopkins Hospital and
Coordinator of the A.P.D.A. Information and
Referral Center at Johns Hopkins.
Ms. Dunlop has experience in working with
Parkinson's disease and support groups. She has
worked with support groups on the western shore,
so she understands our problems. I have not met
Becky face to face, but we have talked over the
phone a time or two. She plans to visit with us
during the spring.
Remember Johns Hopkins I&R Center can now
be called toll free at 1-888-400-2732 when calling
from the Maryland Eastern Shore. If you are
travelling, that number, 1-888-400-APDA, will
ring at the nearest APDA I&R Center to where
you are calling from. In an emergency, that
number could be a lifesaver.
NEXT MEETING IN BERLIN
FEBRUARY 24
The February meeting is unplanned thus far but
will be in Berlin on the last Tuesday of the
month. If you have an idea for a speaker, let me
know. We are always looking for speakers with
topics relevant to our needs and to keep us up to
date. Maybe we should have a party since that
happens to be Mardi gras.
CALENDARS & PINS
The American Parkinson Disease Association has
provided us with 1998 calendars and small APDA
lapel pins. I will have them at the meeting
Tuesday. The calendar is a wall or lay-flat desk
calendar with some room for writing notes or
reminders on each day. The calendar also has a
list of I&R Centers and APDA chapters with
phone numbers, a list of booklets available from
APDA, some helpful hints for easier living, and
unobtrusive ~Thank you's~ to several drug and
medical equipment manufacturers who have made
large contributions to APDA.
ROLAND ~RT~ TWIGG
RT died at the end of 1997. He was a faithful
member of our group for a number of years until
he could no longer get around. RT was probably
the best known radio personality on the Eastern
Shore. Parkinson's ended his radio career years
ago, but the old timers remember him well. He
was Delmarva's best when radio was at its best.
RT loved life and lived it to the fullest while he
was in his prime. His last live radio appearance
was as a guest on the late Bill Phillips' WICO
morning show Party Line with me, promoting our
Walk-A-Thon.
MEMORIALS AND GIFTS
The chapter has received a memorial in memory
of Lydia Jackson from her husband and
daughters.
Gifts to the chapter have been received from
Peter Lamb of Cambridge and Bernell Fullerton
of Berlin.
Pledges [gifts] received in connection with our
Walk-A-Thon were forwarded directly to the
A.P.D.A. for use in funding medical research.
We particularly want to thank the firms who
bought advertising and thereby provided the tote
bags and T-shirts used as premiums for the Walk-
A-Thon and ~thank you~ gifts for our guest
speakers. Thank you to: Bank of Delmar, Bank
of Fruitland, Benedict the Florist, K. L.
Bradford Ceramic Tile & Marble, Discount
Carpet, Eastern Shore Forest Products, and
Horner Honda.
WEATHER & MEETINGS
We have not had an official policy concerning
whether or not our meetings will be held in the
event of snow. Fortunately we have not had to
make a sudden decision during the past few years.
We plan to follow the lead of the schools in the
area. If the public schools are closed or release
their students early on account of snow in
Somerset County, Wicomico County, or
Worcester County, we will call off the meeting
for that day and plan to reschedule it for the
following Tuesday if possible.
DISCLAIMER
At the suggestion of the former A.P.D.A. 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. Note from a garage mechanic: ~I couldn't fix your
brakes so I
made your horn louder.~ Tonight's weather forecast: Dark with continued
darkness until
dawn; lighter during the day tomorrow.
Will Johnston
Will Johnnston
A.P.D.A. DelMarVA Chapter Pres.
4049 Oakland School Road
Salisbury MD 21804 USA 410-543-0110
