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.