PARKINSON'S NEWSLETTER of the Delmarva Chapter, American Parkinson Disease Association January 1997 4049 Oakland School Road Salisbury, Maryland 21804-2716 1-410-543-0110 FAX (410)749-1034 e-mail [log in to unmask] --516 hard copies by snail mail 7 January 1997-- OF GENERAL INTEREST: Walther Birkmayer's death Nick Nieberding on pallidotomy Sinemet CR or not CR Federal funding of Parkinson's research OF LOCAL INTEREST: Meeting January 28 in Berlin, Maryland Obituary Dorothy Crosley Memorials DR.WALTHER BIRKMAYER - PD RESEARCH PIONEER Professor Walther Birkmayer died in Vienna, Austria, December 10, 1996, at the age of 86. Dr. Birkmayer was perhaps the greatest contributor to clinical Parkinson's disease research to date. He was the first physician to use levodopa [the active ingredient in Sinemet] on Parkinson's patients. At that time levodopa was very expensive to produce. It was inefficient because the benefits of the blocking agent carbidopa had not been discovered, and the side effects of the massive doses required were almost unacceptable. In 1973 Dr. Birkmayer was the first to use Selegiline (known to us as Eldepryl or Deprenyl) for the treatment of Parkinson's. Birkmayer was the author or co-author of about four hundred scientific articles and more than twelve books. He maintained his clinical practice in Austria and travelled extensively to treat world leaders who had Parkinson's. Little was known of his very early practice until relatively recently. In the early middle 1990's Nazi records disclosed that he was a second lieutenant in the German S.S., the infamous Gestapo of World War II. This clouded his professional successes despite the fact that before we entered the war he was dismissed from the S.S. when the Nazi government discovered that he was part Jewish himself. It is unfortunate that, in the minds of several in the neurologic medicine industry, early guilt by association in his youth carried over to discredit his humanitarian service to millions worldwide. We in the Parkinson community are grateful for his contributions. NICK NIEBERDING ON PALLIDOTOMY At our November meeting Nick told us about his experience as a pallidotomy patient at Johns Hopkins. Nick related to us his feelings of uncertainty prior to the operation. Brain surgery is not something to be taken lightly. A visit to his room in the hospital well before the operation by Dr. Fred Lenz, the neurosurgeon, helped to allay fears. Dr. Lenz explained what he was going to do and told Nick more of what to expect. I lay in my room feeling alone and scared-- Maybe like an astronaut on that hot August day... And Away We Go! Soon a scorching sun will "stare-down" good ole Baltimore as she sweats through just another summer's day. The tall Hopkins building I watch from points high above the shimmering heat like a rocket ship ready to "get outta here!" Count-down begins at 10 when my heart will pound down the ever-so-slow descending seconds of Parkinson's disease. I want this! All of it! Pow! To the Moon, Alice! To the Moon--where I'll jump high over this hell called Parkinson's! Nick Nieberding (just before surgery) Before the actual operation, a stereotactic crown [best described as a bird cage] was placed on Nick's head, firmly and uncomfortably anchored with screws to Nick's skull to provide reference points for the transition from a CT scan to the operating table. The operating instruments including a Black & Decker hand drill were nearby. He was pushed out of =FEHopkins Hardware=FE to one of the best neurosurgical rooms in the world. This scared him. The operating room was more crowded than Nick expected. Johns Hopkins is a teaching hospital, and he was a major part of the lesson for the day. There was some delay since Dr. Lenz had a longer than anticipated surgery to perform prior to Nick's. The pace of the operation was slow, careful, and deliberate. Discussions (described by the patient as arguments) among the assistants were frequent. A frustrated timorous female voice with an Oriental accent just outside his field of vision announced that she could not turn it. Nick had no idea what "it" was. A surprised male voice asked if she had ever done "it" before, and she said she hadn't. Then she triumphantly announced that she got "it." Dr. Lenz was always in total control as both surgeon and as teacher. I heard my heart beating loudly =FE echoing through the chill of the chamber "like a big clock late at night. Wind it, Doc " Wind it! They were trying desperately to find the over-active area so they could "Zap" it. They found it! "There," cried Dr. Lenz. "Yes," cried the intern. "Help!" cried Nick. Suddenly all was quiet. It was "Zap time"! This was it. Bottom of the 9th, two out. Lenz up! Finally his last call "Very good." After what seemed like a very long while, the operation was completed and Nick was wheeled to the recovery room, returning with the exhausted hand of a Hopkins genius resting on my shoulder and a smile I'd lost 6 years before on my face. Late that night Nick had a visitor. Dr. Lenz, in spite of many hours that day in the operating room, was there to check on him. It made Hopkins seem like a very caring hospital. Nick's family said he looked younger. The operation was a success but not a miracle. Nick still has to take his Parkinson's medicines, and he has days that are not as good as other days. But the invisible ropes and chains that bound him before are gone. Life is enjoyable and really worth living again. At the end of his presentation he was asked if he would go through it again. He let it be known that he did not like having the =FEbird cage=FE on his head, but he would do it. Now he has to go back to worrying over the extra few pounds that result from a returned sense of taste and working in a pizza restaurant. SINEMET CR or NOT CR The Sinemet CR FIRST (Five-year International Response Fluctuation STudy) multi-center report supported the usefulness of the sustained-release product in long term treatment of Parkinson's disease. In the study which compared the standard Sinemet to the CR version, it was found that at the end of five years, motor fluctuations occurred at about an equal rate, in about 21% of both the CR and non-CR patient groups. [This rate is substantially lower than previous studies which suggest about 50% of patients will develop motor fluctuations after 5 years on Sinemet therapy. This change may indicate earlier diagnosis, better dosing by neurologists, or a shift in interpretation of the United Parkinson's Disease Rating Scale.] It was found that Parkinson's patients using Sinemet CR required fewer doses per day to manage their symptoms than patients using standard (immediate release) Sinemet. [The amount of medication active ingredient (levodopa) required is substantially greater in the CR form of Sinemet.] The practical benefit of the CR form here is the ease and convenience of taking fewer doses per day. Patients switching to the CR form may notice a delay in the effect of up to one hour after the first morning dose. In the CR FIRST study, patients receiving Sinemet CR scored generally higher on the scale of =FEactivities of daily living=FE than patients on standard Sinemet. The difference was statistically significant, but in an individual patient the improvement may or may not be perceived. =FEActivities of daily living=FE include speech, salivation, swallowing, handwriting, cutting food, handling utensils, dressing, hygiene, turning in bed, adjusting bed clothes, falling, freezing while walking, walking, tremor, and sensory complaints related to Parkinsonism. The study confirmed that either form of Sinemet can be useful in treating the symptoms of Parkinson's disease. There were no significant differences in the rate of specific side effects such as nausea, dizziness, insomnia, or depression. Certain medications may interact with either Sinemet. The study also confirms the benefit to patients of early Sinemet therapy. Although neither form of Sinemet is a cure, and neither stops the progression of the disease, Sinemet in one form or the other is by far the most effective medication we have today for treating the symptoms of Parkinson's. Sinemet CR is a sustained-release (not controlled- release as one might guess from the CR name) form of the standard Sinemet with its active ingredients held in a medium that is more slowly dissolved, gradually releasing medicine into the bloodstream and causing less variation in plasma levodopa levels. Sinemet CR is more expensive than the standard (immediate release) Sinemet on a per unit of medication basis, and more CR is required than is the case with standard Sinemet. Standard Sinemet is now available in generic form, making the price differential even greater if one compares brand-name Sinemet CR to the generic standard Sinemet. Until recently Maryland Blue Cross/Blue Shield prescription drug plans required the patient to pay only the per prescription co-pay and did not require the patient to pay the co-pay per prescription plus the difference between brand- name standard Sinemet and its generic equivalent. If a patient wishes to stay with brand-name Sinemet, the out-of-pocket cost to a prescription card holder for standard Sinemet will be higher than the out-of-pocket cost of Sinemet CR. Sinemet CR is still protected by patent and therefore there is no generic equivalent. Which is better for you? Different people respond differently to different drug delivery systems. The active ingredients are the same. I am committed to using the standard Sinemet for the duration of the Entacapone drug study I am in. There are also different strengths of Sinemet available: 10/100, 25/100, 25/250 in the standard Sinemet and 25/100 and 50/200 in the CR. All tablets are scored to make it easy to break them in half, effectively almost doubling the choices. Which should you use? Standard? CR? CR with a standard boost in the morning? The choice is up to you and your physician. This was largely adapted from an article in the 2nd Quarter, 1966 Parkinson Report published by the National Parkinson Foundation. FEDERAL FUNDING OF PARKINSON'S RESEARCH The United States government is by far the greatest source of funds for medical research dollars used in the search for the cure for Parkinson's disease. It is also the greatest source of funds for medical research on practically every other disease known or unknown to man. The amount we raise nationwide with our Walk-A- Thons and other activities is important but a mere =FEdrop in the bucket=FE compared to federal spending for research. At the present time, Parkinson's disease research is substantially under-funded by the federal government compared to most other diseases. Parkinson's is perhaps less deserving of medical research dollars than AIDS, cancer, heart disease, etc., since Parkinson's is not immediately life threatening, is not contagious, and has its greatest incidence among people at or near retirement age. =FELess deserving=FE is a relative term. Spending ten or twenty times as much per AIDS patient than per Parkinson's patient may be logical, but over $1,000 per AIDS patient compared to about $26 per Parkinson's patient is too much difference. We do not recommend reducing other medical research where it is needed. We want to increase research for the benefit of all. The new congress will be getting under way shortly. The Udall bill in the last congress passed the Senate but never reached the floor of the House. It is about time to begin our campaign again. Our efforts have produced extra Parkinson's federal research dollars but far less than would have been provided by the Udall/NIH Revitalization Act. WORCESTER CO. COMM. ON AGING PROGRAM Mrs. Marty Yates of the Worcester County Commission on Aging will be the featured speaker at our January meeting at the Atlantic General Hospital in Berlin. The various counties in our part of the Eastern Shore offer several programs designed to be of help to those who want or require assistance as a result of physical or cognitive impairment. The Worcester Commission on Aging provides support and counselling, not only to those who have the impairment, but also to caregivers. The commission has focused on the problems associated with Alzheimer's, but there are some areas where they can be of use to the Parkinson's community. These services to be described by Ms. Yates are available only to Worcester County residents, but there are similar programs available in surrounding counties. After her presentation we will have a relatively short support group meeting to catch up on the latest news about Parkinson's medical research, the status of federal funding for relevant research with the failure of the N.I.H. Revitalization Act [including the Udall Bill] to reach the floor of the House of Representatives in spite of a unanimous vote for passage by the full Senate and co- sponsorship by a majority of the House members, and other regional or national happenings concerning the Parkinson community. Atlantic General Hospital is located east of Route 113 off the first intersection south of Route 50. We meet in the hospital's conference room on the first floor just before the cafeteria. DOROTHY CROSLEY Mrs. Dorothy R. Crosley died at her home following a fall several months ago which was not thought to involve serious head injury. Much later it was discovered that she had internal bleeding and infection under the bruises she had from the fall. She spent several weeks in Peninsula Regional Medical Center Hospital and for a while seemed to be slowly recovering. While in the hospital she developed pneumonia. The=7F combination of internal head injury with infection, pneumonia, and Parkinson's was too much. She and her husband George were at almost every support group meeting over the past couple of years. Several memorial donations to the support group have been made by her friends. This month's Parkinson's Newsletter is issued in her memory. We will miss Dorothy. MEMORIALS RECEIVED Memorials in memory of Mrs. Nellie Taylor have been given by Robert Taylor Construction Company, Shirley Whitman, June Smith, Debra Taylor, and James C. Church. Memorials in memory of Mrs. Dorothy Crosley have been given by Loran J. Robertson, Mr. and Ms. Burnley Wilder, and Miriam F. Greenhalgh. A memorial in memory of Domnic Citrano has been given by Mrs. Frances Citrano. Undirected contributions were received from Mr. and Mrs. Barney Frank, Mr. and Mrs. Bryan Roberts, and Dr. Peter Lamb. Donations made to the support group will be used to pay support group expenses. We are a non- profit charitable organization recognized by the State of Maryland and the Internal Revenue Service. All labor is volunteer. Donations in excess of support group needs are forwarded to our national organization and used primarily for medical research. The chapter/support group has no membership dues. DISCLAIMER 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. Feeling stressed? Cheer up! Stressed is just desserts spelled backwards. 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