Ladies and gentlemen of parkinsn list,
 
It's just you and me reading and writing the Auxiliary Bulletin
this month. David Rosner, our contributing editor, was on a
business trip at press time and therefore unable to prepare an
article for this month's issue.
 
The Pallidotomy Seminar article attempts to carry on the goal of
the seminar: to help parkinsonians decide if this is apropriate
for each of them. If you already know the answer to that for YOU,
skip the article - its a tough read anyway. If you or a loved one
are now considering this treatment, then carefully study the
article. While it may not provide enough information to base a
decision on, it will certainly provide you with lots of questions
to discuss with your doctor.
 
The article about the Products and Services Fair will be of
interest to those of you who live within a hundred miles or so
of the San Francisco Peninsula. It may also be of interest to
those who want to hold a similar "Trade Fair" in their own area.
 
Dr. Langston on Network TV will be of interested to all.
 
                Regards,        Arvid
 
        THE PARKINSON'S INSTITUTE AUXILIARY BULLETIN
                          JULY, 1995
 
Pallidotomy Seminar at the Parkinson's Institute
 
When The Parkinson's Institute (TPI)  announced a seminar last
month, "Pallidotomy - Is Now the Time?", attendees nearly
filled the large hotel conference room (capacity - 300) which
was rented for the occasion. The seminar had several purposes:
help patients decide if they are a candidate for this operation;
describe the procedure; help them assess the risks vs. possible
results; explain TPI's plan to offer surgical treatment for
Parkinson's Disease (PD) along with objectively recorded
procedures and controlled measurements of the results in order
to quantify the benefits statistically; answer questions from
concerned attendees.
 
The seminar was presented by a team of doctors from TPI. Dr.
Caroline Tanner provided an overview of the material and
served as moderator. Dr. Heidi Shale characterized the PD
patient most qualified for a pallidotomy and described the tests
and evaluations planned at TPI for pallidotomy recipients. Dr.
Laszlo Tamas described the surgical procedure, traced its
evolution, pointed out its intent and its risks. Dr. Tanner then
integrated it all by her moderation of the lively audience
participation segment.
 
In her opening remarks, Dr. Tanner defined cardinal symptoms
of PD as bradykinesia (slow movement), resting tremor,
cogwheel rigidity, and postural reflex impairment, with a
pathology of degeneration of the substantia nigra with lewy
bodies, and a pharmacology of decreased dopamine.  Many
medicines have been devised and tested in recent years which
address various aspects of the complex delivery system of
dopamine to the movement control areas of the brain. Each of
these medicines was objectively tested for safety and
effectiveness because the Federal Drug Administration (FDA)
requires it. Similar objective tests are not required by the FDA
for new surgical procedures. In PD, the ability to test a new
therapy objectively is often hampered by lack of a quantitative
diagnostic test or measure of improvement, unpredictable
response, variable from patient to patient and over time for each
of them as the disease progresses and from hour to hour as the
patient develops increased sensitivity to the treatment.
Furthermore, side effects and the Placebo Effect are also
frequently encountered. All this variability of  perceived results
demands a controlled study of surgical treatments similar to
those required for new drugs. TPI proposes to begin surgical
treatments for PD with standardized pre-tests, long term post-
tests, reliable and appropriate measurements for effectiveness,
and standardized recording of side effects, using the same
documented procedure for all subjects. This study should help
reduce the uncertainty which presently exists, caused by many
medical facilities, reporting a few hundred cases total, treated
with different surgical techniques and evaluated for results by
different methods and with no long term follow up.
 
Dr. Shale first described the pre-qualification of a PD patient
for the Pallidotomy treatment. The patient should: have typical
Parkinson's Disease; respond to L-dopa; be experiencing OFF
periods; had a full trial of available medications, especially
Sinemet and agonists (such as Parlodel and Permax); have no
serious dementia or depression; no prior brain surgery for PD;
be in good health and have a Magnetic Resonance Imaging
(MRI) test performed just prior to surgery. Studies to determine
how long the effect of pallidotomy lasts have not been
conducted. TPI is proposing to evaluate the long term effects of
pallidotomy on motor function through rating scales, tremor
recordings, videotapes and diaries, and tests for quality of life,
activities of daily living, cognitive function, mood, vision and
MRI. Preoperative evaluations will be in 3 visits over 6 weeks.
Postoperative evaluations will be scheduled for 3 visits during
the first month, every month for the first year and continuing
follow-up for at least 2 years.  There is an element of risk in all
surgery. Pallidotomy is a reasonably safe procedure.  Benefits
the Parkinson's patient may realize include the possibility of
decreased PD symptoms, frequent evaluations at a world
renowned movement disorder center and a contribution to the
store of knowledge about Parkinson's Disease.
 
Dr. Tamas defined stereotactic pallidotomy where "stereotactic"
means using a three dimensional coordinate space to guide a
probe to an exact location deep within the brain to the pallidum
(indicated by "pallido" in the name), so that a small, specific
group of cells can have an "otomy", meaning destruction,
performed on them. The pallidotomy target is the Globus
Pallidus, pars interna (PGi), about 4x8x12 mm inside the brain.
The final placement of the lesion is done on the basis of
function, not structure. This is because other important "real
estate" is very near the same "location" in the brain. For
example, damaging the nearby internal capsule can cause
permanent paralysis, while a lesion that damages the nearby
optic tract can cause blindness. The neurosurgeon and consulting
neurologist are able to listen to the firing patterns of the nearby
neurons as they "talk" to each other because the inserted probe
has a sensor on it (like a microphone). Each group of neurons
has a unique firing pattern which identifies that group's function.
This allows the neurosurgeon to correctly place the lesion
exactly in the proper functional area to be effective. Dr. Tamas
traced the steps of the procedure: enter the hospital the morning
of the surgery; be fitted with a stereotactic frame; receive a CT
scan; go to the operating room and, under local anesthesia have
an incision and the probe inserted; neuron firing patterns
recorded; neurons stimulated and patient describes/demonstrates
result to pinpoint functional location; lesioning; wound closure;
leave hospital the next day. He described some of the technical,
scientific and clinical advances which made today's surgical
procedure possible. And he reminded us of some of the
questions we must ask ourselves as we seek the answer to the
question of the day: Should I have a pallidotomy now? They are:
1. Is my PD diagnosis correct, and uncomplicated by other
syndromes? 2. Have I tried all available medicines and
experimented with optimizing the dosages? 3. What is my risk
from this surgery? 4. Will the surgical procedure and therefore
my chances of benefit improve substantially during the next
year?
 
Spring Products and Services Fair, Very Interesting!
 
On June 3, 1995, the Peninsula Parkinson's Support Group
(PPSG) held it's Annual Spring Products and Services Fair at
the Sunnyvale Senior Center. The PPSG Chairman of the Board
of Directors, Vicki Riley introduced the speakers and served as
moderator. Featured speakers included Gary Heit, PhD, MD
from Stanford University Neurosurgery Department, who
discussed "Pallidotomy for Parkinson's Disease", a subject for
which he is highly qualified. Dr. Heit studied pallidotomies in
Colorado, where he assisted in about 35 of the operations
before moving to Stanford where he has performed about 35
more. He discussed characteristics of a Parkinson's patient who
would be a good candidate for pallidotomy, as well as how the
operation is performed and the risks associated with the
procedure.
 
Other featured speakers included Paula Lewis, RN, Clinical
Research Coordinator for the Parkinson's Institute. She
presented an "Overview of Clinical Research at TPI". She
described the many new medications for Parkinson's which are
being tested at the Institute, how they are supposed to work, how
the test procedures are designed and how long they take.
(Years!) In addition, Sally Hedman and Maria Meneses of
Creative Care Options discussed their services to the elderly
and to caregivers. They provide information on long term care,
housing options, matching elderly's needs with  available
services, and a caregiver's survival kit, to name a few. Anne
Harroun and Marcy Radler Moyer showed us some of their
"Housing Adaptations for People with Physical Limitations".
These consisted of slides of many special fixtures designed to
help handicapped people to carry on the chores of daily living in
every room in their house.
 
Many of the other exhibitors also made short presentations.
Pacific Bell offers special amplifiers for those with hearing
loss and those with soft voices. PG&E has special low rates for
low income utility customers. The Senior Outreach Program provides
assistance in obtaining benefits, services, transportation and
nutrition. Athena Rx Home Pharmacy discussed their pharmacy
service with second day home delivery and noted that they now
offer Hearty Balance foods for Parkinsonian diets and non-
prescription items such as vitamins. A catalog is available by
calling 1-800-5-ATHENA. Pro-check Writing described their
bill paying service. The Lark Lift Chair was demonstrated.
 
In addition, other exhibitors displayed their products or services
at a booth in the meeting room. Examples include Personal
Home Services of Mountain View, CA, a Parkinson's Exercise
Program sponsored by the San Jose Office of  Therapeutic
Services (408)267-0200 and the Parkinson's Unity Walk,
scheduled for Oct. 15, 1995 offered literature and sign-up
information (510)828-5224.
 
This excellent program was free and included refreshments and
door prizes! If you missed it, we're sorry. Remember what a
good program you missed when next year's Products and
Services Fair is announced and resolve to join us! If you still
have doubts, ask me about the door prize I won. Attendees came
from the various counties of the Greater San Francisco Bay Area.
 
 
Dr. Langston on Network Television?
 
Sorry for the false alarm on this subject in last month's Bulletin.
"Prime Time Live" has tentatively rescheduled the segment they
recorded about a month ago. Barring unscheduled news items, it
will be shown on Wednesday, July 12, at 10 PM (9 PM Central).
"Good Morning America" may also air some of the interview the next
morning between 7 and 9 AM.  Dr. Langston will be interviewed about
Parkinson's Disease, The Parkinson's Institute and his new book,
"The Case of the Frozen Addicts". Also, Dr. Langston and Dr. Widner
from the Swedish fetal transplant team will explain that operation.
They will describe the results of the operation on Connie Sainz, the
most severely affected parkinsonian of those originally exposed to
MPTP. Unfortunately, scheduling and content of the shows are subject
to change if current events on July 12 require more time than usual.
 
If you want get all the information on this subject, buy and read
"The Case of the Frozen Addicts" by Dr. Langston and Jon Palfreman.
(It may not be in your public library yet. It was released about
June 1.) It won't take long to read. It's as hard to put down as a
good mystery novel. If the authors wrote a novel like this, the
number of interrelated coincidences would have made the story
unbelievable. So it is a good thing it's all true. Then, when
you finish reading for the fun of it, go back and read for the
technical information about PD. There's a lot of it!
 
                TPI AUXILIARY BULLETIN - JULY 1995
 Distributed monthly from Sunnyvale, CA. A San Francisco Bay Area
           community in the heart of Silicon Valey, USA
 
Editor: Arvid Rosenboom     Contrib. Ed.:   David Rosner
 
This Bulletin is solely for the information of the reader. A reasonable
 
effort has been made to provide accurate, complete and useful
information. However, these attributes cannot be guranteed. Mention of
any product or service does not imply its approval by the Bulletin
staff.