PARKINSON'S NEWSLETTER of the Delmarva Chapter, American Parkinson Disease Association November 1996 - 4049 Oakland School Road Salisbury, Maryland 21804- 2716 1-410-543-0110 FAX (410)749-1034 e-mail [log in to unmask] #1 GENE AREA IDENTIFIED OF GENERAL INTEREST: #2 ELDEPRYL GETS MORE COMPETITION #3 WHAT SHOULD A CAREGIVER DO? CAREGIVER NOTEBOOK #4 HELPING OTHERS AT END AUTOPSY ORGAN DONOR / BRAIN BANK OF REGIONAL INTEREST: LIBRARY / INFORMATION SOURCES OF LOCAL INTEREST: NICK NIEBERDING TELLS ABOUT PALLIDOTOMY PARKINSON GENE AREA IDENTIFIED There has been a controversy over the past few years as to whether or not there is a genetic cause of Parkinson's disease. Thursday, November 14, 1996, an announcement was made in a press conference at the National Institutes of Health by Dr. Mihael H. Polymeropoulos that a particular gene area on a particular chromosome has been linked to the Parkinson's disease found in several generations of a large family scattered throughout the United States and Italy. This announcement is the result of studies made by Drs. Larry Golbe and Roger Duvoisin of The Robert Wood Johnson Medical= School [formerly Rutgers] in New Brunswick, New Jersey. Dr. Duvoisin presented the early part of this study at our Baltimore Symposium in 1992 when he had the idea, but the knowledge and research techniques for identifying particular segments of the human genome had not progressed far enough to provide demonstrable proof of a genetic link. It is too early at this time for us to hurry in to have our DNA tested, but in a few years DNA testing may well be a standard part of a physical examination. DNA does not usually change during a lifetime, but the technology to read and understand our genetic code is changing rapidly. Identifying and understanding a cause of Parkinson's could be the giant step needed to enable science to develop a cure rather than a merely temporary relief of symptoms. Dr. Duvoisin is now retired from active practice but will stay involved in Parkinson's research as Chairman of the A.P.D.A. Medical Advisory Board. ELDEPRYL GETS MORE COMPETITION Now that the patent on Eldepryl has expired, Somerset Pharmaceuticals is getting more competition. The October Parkinson's Newsletter mentioned that Lederle had a selegiline hydrochloride on the market for less and had enclosed a coupon for sixty free tablets in an A.P.D.A. mailing. With the high profit margin which exists in Eldepryl, I predicted more competition. Now DuPont Pharma, the seller of Sinemet, has introduced Carbex, its generic version of Eldepryl. Until recently Eldepryl was available only as a tablet. Now it is available only as a capsule. The Carbex ad reads =FENews for patients who prefer tablets=FE and encourages physicians to prescribe Carbex by brand name with =FEDispense= as written=FE or =FEDo not substitute=FE added. With at least three drug houses= in the United States selling selegiline, price competition should increase. The effectiveness of Eldepryl as a neuroprotector is still an unsettled issue. According to the DATATOP study, it was found that patients who were given Eldepryl soon after diagnosis were able to delay using Sinemet longer than those who were merely taking a placebo. Many clinicians today downplay the supposedly neuroprotective benefits and either do not prescribe Eldepryl or prescribe it for patients for whom it helps provide symptomatic relief in conjunction with Sinemet. I have been using Eldepryl since late 1991. Based upon PET scans made in 1992 and 1996, my Parkinson's has progressed in various parts of my brain between six and ninety percent from 1992 to 1996. I have no way of knowing what might= have happened without Eldepryl, but an effective neuroprotector should provide better results than that. WHAT SHOULD A CAREGIVER DO? =FEWhen one is sick, two need help.=FE At the October meeting in Berlin,= Ms. Paula Goldberg, R.N., explained the meaning of this quotation when she talked about the roles a caregiver should fill in the life of the patient and in his or her own life. There are positives to caregiving, such as increased closeness and better communication between the patient and the caregiver. Ms. Goldberg gave hints to eliminate as many negatives as possible. To prevent caregiver burnout, you should know yourself. Don't compare yourself to others; others may look like saints to you, but they have shortcomings too, even if they don't show. Instead take talents from your past life and apply them to caregiving. Decide what absolutely must be done, and assign priorities, avoiding busy work. Learn to say no. Subdivide tasks into 15 minute sections, and keep a victory list of what you've accomplished. Reward yourself. Be sure to take real, uninterrupted breaks. Do something you enjoy that is unrelated to your caregiving routine. Humor and exercise are two coping mechanisms that are helpful for both you and your patient. To provide the best care for your patient and yourself, you will need outside support. That support can be met by family, friends, and professionals. Make your situation clear to family and friends, get a community resources list, join a support group, and be sure to keep your doctor and his staff informed. Ms. Goldberg spoke from her experience as Nurse Coordinator, Parkinson Disease Clinic, Johns Hopkins Outpatient Center, and we are grateful for her expert knowledge. You can contact Ms. Goldberg at the American Parkinson Disease Association Information and Referral Center at Johns Hopkins Outpatient Center (410) 955-8795. CAREGIVER'S EXAMPLE Our own Mrs. Josie Taylor was kind enough to share with us her method for giving instructions to those who assisted her in caregiving. Josie has prepared a notebook which gives specific instructions for care of her patient in categories such as time and amount of medications, what to do in event of an emergency, timing for his daily routine, menus, and even a shopping list of his favorite approved foods by brand and supermarket. She includes a daily log and charts that she has developed to record pertinent medical and other information suitable to take to doctors' appointments. It took Josie quite a bit of time to develop and write her patient notebook, but both she and her patient can feel more secure knowing that consistent care can be provided even if she is someplace else. Thank you, Josie, for sharing your caregivers' notebook with us. HELP FOR OTHERS WHEN YOUR TIME HAS COME THOUGHTS ON AUTOPSY (Adapted from an article in The Synapse, The Newsletter= of the American Parkinson Disease Association Information and Referral Center of Virginia, Fall, 1996 issue by H. Robert Brashear, M.D., Department of Neurology, University of Virginia Health Sciences Center) An autopsy is a post-mortem medical procedure that involves careful examination of tissues using specialized techniques. The word =FEautopsy=FE comes from the Greek root meaning to =FEsee for one's self,=FE and the use of autopsy to study= disease began as early as 200 B.C. There are many benefits to autopsy, and the information that is obtained is invaluable to families, clinicians, and researchers. Despite its importance, the rate of autopsies has dropped to less than 15 percent. The subject of autopsy may seem an uncomfort- able one to bring up in conversations among patient, family, and physician. Because many find it difficult to talk about, planning an autopsy is rarely pre-arranged and is most often dealt with in the difficult hours just after someone has died. This is regrettable because information obtained from an autopsy can be extremely important in providing final answers to difficult questions about diagnosis and illness. On the other hand, some patients and families want to discuss the issue of autopsy well before the time of death. These individuals are most often interested in getting a confirmed diagnosis. A number of neurodegenerative diseases such as Parkinson's and Alzheimer's can only be definitely diagnosed by autopsy. Further research indicates that a number of neurodegenerative illnesses may be inherited. Therefore, obtaining a confirmed diagnosis becomes very important to surviving family members. Despite amazing advances= in diagnostic methods, in as many as 25% of cases, the diagnosis made at= autopsy is different from the clinical diagnosis that was made prior to death. In addition to providing an accurate diagnosis, information obtained from autopsy can help clinicians and researchers to better understand disease processes, learn new medical information, and assess new technologies more effectively. Patients and families who are interested in prearranging autopsy can find out how to do so by contacting a hospital, a pathologist, a medical school, or, in some cases, a funeral home. In some states the patient or a close family member may fill out papers requesting that an autopsy be performed at the time of death. This is called a premortem consent, and it is reconfirmed at the time of death. For some, the high cost of an autopsy (over $2,000) can be a deterrent. However, in most cases there is no charge for the procedure because the results help to educate doctors on better ways to diagnose and treat patients, and the autopsy is a means of improving medical care and advancing science. In some cases, patients with specific disorders such as Parkinson's and Alzheimer's request that portions of tissue obtained at autopsy be donated for specific areas of scientific study. Several medical centers have developed special autopsy and brain donation programs in order to carry out specific research programs. Although there is no cure for neurological disorders such as Parkinson's and Alzheimer's, scientists continue to conduct research for clues that may be hidden in brain and nervous system tissue. Important pathological data are collected from brain tissue obtained at autopsy, and portions of the tissue can be stored or =FEbanked=FE to be studied as new technological and= research advances occur. Our understanding of the disorders of the central nervous system has progressed significantly in the past few years, due in part to the knowledge gained from autopsies. Despite these advances, millions continue to suffer from incurable neurological disorders. The causes of Parkinson's and Alzheimer's remain a mystery. Improved treatments, prevention, and ultimately a cure for these disorders depend upon uncovering clues hidden in brain and nervous system tissue. Deciding whether or not to have an autopsy is a personal decision. It is difficult to make, but given its importance in confirming diagnosis and providing other useful information, an autopsy is something patients and families should consider. BRAIN BANKS AND ORGAN DONATIONS With the advance in searching the human genome for the genetic cause of Parkinson's, there may be an increasing need for brain tissue of people who had Parkinson's. We are not sure that Parkinson's is only one disease. There could well be many subdivisions of what today is lumped into the general category known as idiopathic Parkinson's. As we all know, each of us has a similar but different set of symptoms. Brain banks can provide answers to help those who come after us. There is also a shortage of organs for transplanting into people who need help now. Last week the shortage of donor livers prompted authorities to announce that potential recipients with chronic liver disease who had expected to receive a long awaited transplant were being put at the end of the waiting list in order to make more organs available to those with the greatest probability of a successful and long lasting transplant. There is need for eyes, kidneys, hearts, livers, and even lungs. Not everyone can be a donor, but everyone can make an offer when the time comes. PARKINSON'S BOOKS AND INFORMATION There are many sources of information about Parkinson's disease available either free or at very low cost. On the Delmarva peninsula, just about every public library has something for us. The Wicomico County Library in Salisbury has about eight books dealing primarily with Parkinson's; several more books on neurology which include information on Parkinson's; several booklets, newspaper clippings, and newsletters about Parkinson's in the reference department's vertical file [ask the reference librarian to see the file]; periodical indexes to most magazines which may have Parkinson's articles; magazines; access to other books and journals through inter-library loan at low cost; and in-library access to the Internet and the World Wide Web, which have many Parkinson's related sites. Wicomico County Library is adding Internet and World Wide Web access at Joseph House Village and in Bivalve. As Maryland residents, we can use the Salisbury State University and University of Maryland- Eastern Shore libraries. Although we live in a predominately rural area, the information age is here for us to use. MEETING TUESDAY NOVEMBER 26 AT 1:00 ASBURY UNITED METHODIST IN SALISBURY NICK NIEBERDING TO DESCRIBE PALLIDOTOMY Mr. Nick Nieberding, a recent recipient of a pallidotomy at Johns Hopkins University Hospital, will tell us what it is like to have the surgery and how he feels about the benefits of the operation. Unlike most operations, the pallidotomy requires the patient to be awake and alert during the operation to help guide the surgeon into the precise area to be zapped. A very small miss in the target area can be a disaster, so extreme precision is imperative. Nick and Gloria [his wife] work together at Ponzetti's Pizza on North Salisbury Boulevard. Restauranteurs have a particular problem with Parkinson's since loss of smell is common with this disease. According to a recent article in the British medical journal Lancet, one of the most often lost or deficient odors for Parkinson's patients is the smell of pizza. Nick is practically never at a loss for words. We should have an interesting, fun, and informative meeting. Asbury United Methodist Church is located on the corner of Camden Avenue and Dogwood Road just south of the Salisbury State University campus. Coming from Salisbury on Business 13S, pass Salisbury State University. Turn right onto Dogwood Road just before the General Tire Store. The church and large parking lot will be on your left. Enter the church's door furthest from Salisbury State University and nearest Camden Avenue. We meet in the church parlor. THERE WILL BE NO MEETING IN DECEMBER NELLIE TAYLOR Mrs. Nellie Taylor, who often came to our support group meetings with Bob and Kathleen Holland, died November 4 at Peninsula Regional Medical Center Hospital, following a fall at her home in Berlin. We will miss her. DISCLAIMER[in 6 point 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. If at first you do not succeed, don't try sky diving. -- Happy Holidays -- Will Johnston 504 HARD COPIES SENT BY SNAIL MAIL ON TUESDAY, NOV 19, 1996 WILL JOHNSTON 4049 OAKLAND SCHOOL ROAD SALISBURY, MD 21804-2716 410-543-0110 Pres A.P.D.A. DelMarVa Chapter