 |
 |
PARKINSON'S NEWSLETTER of the Delmarva Chapter, American Parkinson Disease Association November/December 1997 - 4049 Oakland School Road Salisbury, Maryland 21804-2716 410-543-0110 =20 FAX (410)749-1034 e-mail [log in to unmask] MEETING 1 PM, TUESDAY NOVEMBER 18 AT ATLANTIC GENERAL HOSPITAL IN BERLIN UDALL BILL ALMOST A CERTAINTY 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 passed in the United States Senate. The house version of the appropriations bill did not include the specific Parkinson's funding, but in the Conference Committee, the Udall Bill was included. The only hurdle left is President Clinton's signature to make it law. Mr. Clinton came to our help in the very early days of his first term, and I think we can depend upon him to make the Udall Bill law. We have lobbied hard for this legislation. Many people who have Parkinson's disease and their families and friends spent many hours but relatively few dollars to get this legislation passed. All of our senators co-sponsored the Udall Bill. Congressman Wayne Gilchrest was a cosponsor almost from the very beginning of our efforts. We owe our representatives a big =FEThank you=FE for what they have done for us. I have not seen the final version approved by the Conference Committee, but I understand it stands virtually unchanged from its original wording. We are talking big money! We will be giving up the research money we used to get [about $34 million] and instead will get a whopping $100,000,000.00 which should go a long way in finding the cause and cure for Parkinson's disease. The lobbying has also helped us join with other Parkinson's groups in working toward a common goal. More on page 4. NOV. SPEAKER OBSERVED PIG FETAL IMPLANTS Mr. Jim Maurer, a member of the Board of Directors of A.P.D.A. and President of the Massachusetts Chapter of A.P.D.A., will be our speaker at the November 18 meeting in Berlin. Jim has been very active in working with medical research surgeons in the Boston area and in Havana, Cuba. His function has been that of a Parkinson's patient advocate or =FEhand-holder=FE in the operating room. Although he has Parkinson's himself, he is very active. He is scheduled to speak to a newly formed support group in Rutland, Vermont, on November 13, to attend a meeting of the A.P.D.A. Board of Directors in New York on his way south to see us, and to visit with his brother in Rockville after talking to us. Human fetal tissue implants have been very controversial and politically sensitive. The use of brain tissue from pig embryos is far less controversial. Cardiac surgeons have been using pig heart valves to replace human heart valves for several years, but tissue rejection problems in the brain are not well researched yet. The pigs used have been to some degree genetically engineered with human genes to make the pig tissue more compatible with human tissue. There have been several experimental pig to human brain tissue implants performed, and the initial results are encouraging. Directions to Atlantic General Hospital are on page 4. We will meet in the patient dining room on the second floor. The meeting should finish about 2:00 or 2:30 after a question and answer period and refreshments. If you need transportation, let me know (410-543-0110). WALK-A-THON A FINANCIAL SUCCESS We have sent A.P.D.A. over $2,000 in Walk-A- Thon money so far, and money is still coming in. The money we receive does not go through the chapter bank account. It goes straight to our national office to be used for medical research and education. The turnout for the walk was miserable. The crisp October weather expected turned out to be more like July. I could count the walkers on my fingers, and have most of one hand left over. We were competing with Peninsula Regional Hospital's 100th anniversary party, a cancer fund raiser a few blocks away, and a beautiful day to go to the beach. The hospital also had fewer attend their celebration than expected. Spring may be a better time for a fund raiser. The Walk-A-Thon concept has been good, but with almost every charitable organization having one, many people may be tired of Walk-A-Thons. We still have some T-shirts and bags which were given as premiums. The shirts are good quality cotton. The bags are large plasticized jute tote bags with round bamboo handles. The handles protect fingers from being cut into even if the load is heavy. The shirts and bags have local advertising which covered the cost of the merchandise. CANDY MACHINES IN SOMERSET COUNTY There are some loose candy vending machines in Somerset County which are providing a small income to the chapter. The machines are owned and serviced by Mrs. Lori Goldsborough of Westover and her husband. Mrs. Goldsborough is a physical therapist, and Mr. Goldsborough is a building contractor. Their candy vending machine route business is just getting started. Some of their machines benefit us, and others benefit McCready Hospital. The Goldsboroughs hope to expand into Wicomico County and will be looking for sites for their 25-cent candy machines. The machines' labels state that a portion of the profits from sales of a particular machine go to us. =0CEASTON MEETING WITH DR. STEPHEN REICH Dr. Stephen Reich, Director of the Parkinson's Clinic at Johns Hopkins Hospital, presented his annual talk on the Eastern Shore at Easton's Memorial Hospital on October 8. His message this year was about HOPE. Honesty and Humor - accept Parkinson's and don't be embarrassed. Confront it head on and be light-hearted. Optimism - be positive about the future. Emphasize what you can do, not what you can't. Problem solving and Perseverance - over the years you have solved many of life's problems. Parkinson's is another problem to solve. Don't give up. You can't be a wimp and cope with Parkinson's. Education and Exercise - know the options. Work with your doctor. Knowledgeable patients can help their doctors in treatment geared to individual differences. One of the worst things to do is to be sedentary. Some form of regular exercise is necessary to cope with Parkinsons. Dr. Reich talked about the changes over the past year. A gene for Parkinson's has been discovered which may provide a clue for treating all Parkinson's although most Parkinson's cases are thought to not be of the heredity kind. Over 120 pallidotomies have been performed at Johns Hopkins, and as a result more is known about the operation. Surgical technology has improved, and patients who can benefit from a pallidotomy or thalamotomy can be better identified. The chance of a minor problem as a result of the operations has been reduced to about 5%, and the chance of major problems to about 1%. Johns Hopkins has not yet implanted the deep brain stimulator in patients to control tremor. Fetal tissue implantation is still experimental. There are two new agonist drugs just approved by the FDA for Parkinson's, Mirapex and Requip. They will compete with Permax and Parlodel. It is still too early to know whether or not to switch to the new non-ergot agonists. =0CHEALTHSOUTH HERE FOR COMMUNITY HealthSouth Chesapeake Rehabilitation Hospital representatives Mrs. Patti DuBuque, Director of Business Development, and Mrs. Julie Johnson, Director of the Physical Therapy Department, spoke at our September 23rd meeting in Salisbury at Asbury United Methodist Church. Mrs. DuBuque stressed the idea that HealthSouth's job is to fill community needs. Physical therapy is available at =FEChesapeake Rehab=FE on either an in-patient or an out-patient basis. Maryland is one of the states which does not require a physician's prescription before physical therapy can be provided, but most health insurance companies require that the patient have orders for physical or occupational therapy from a doctor before insurance benefits are paid for physical therapy. Mrs. Johnson stressed the need for individual exercise programs for individual patients. She also stressed that diet is a part of a healthy life style. Almost all Americans need to eat a diet lower in fats. For most people protein is recommended, but for Parkinson people, reduced protein intake at breakfast and lunch may be needed to have medications work as they should. APDA 1998 CALENDARS AND APDA 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 in Berlin. 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 =FEThank you's=FE to several drug and medical equipment manufacturers who have made large contributions to APDA. We and all other chapters were invited to have important 1998 chapter events listed on the calendar. Only one chapter had an event listed. We can't plan eighteen months ahead. =0CCALL THE NEAREST I&R CENTER FREE The cost of calling the A.P.D.A. Information and Referral Center at Johns Hopkins from the Eastern Shore of Maryland just went down. SmithKline Beecham Pharmaceuticals, manufacturer of the just FDA approved agonist Requip (ropinirole), has provided a toll-free telephone service which is supposed to connect a caller to the nearest APDA Information and Referral Center. The number is 1-888-400-APDA (1-888-400- 2732).I was the first to call and get the I&R center at Johns Hopkins. This is fancy telephone technology and an exercise in geography. As a test in early October, one of our group called the number from Chincoteague, Virginia. Virginia has two APDA I&R Centers, one in Charlottesville to cover the central and southern parts of Virginia, and one in Fairfax to cover northern Virginia. Chincoteague is about as far north and east as one can get on Virginia's Eastern Shore, but it is south of Charlottesville. The closest I&R Center is Johns Hopkins Hospital in Baltimore, Maryland. Perhaps wisely, the call from Chincoteague to 1-888-400-APDA rang a telephone at the APDA national office in Staten Island, New York. You will hear no advertisement for Requip or SmithKline Beecham Pharmaceuticals when using this number. The call appears to work just like any other toll-free 800 or 888 number. Thank you, SmithKline Beecham. Keep this number in mind and on a piece of paper in your wallet or purse. If you run into difficulty while travelling, 1-888-400-APDA could be a lifesaver! PAULA GOLDBERG TO LEAVE HOPKINS I&R Ms. Paula Goldberg has resigned her position as Coordinator of the APDA Information and Referral Center at Johns Hopkins Hospital. Her resignation date is in early December. Paula has been an effective counsellor to many in our group, and we will miss her.=20 =0CMORE BENEFITS FROM UDALL ACT Win or lose, the push for the Udall Act has been good for us. And winning will make it even better! We have worked together for a common cause, hoping to accomplish what no single Parkinson's individual or group could do alone. We talked to or wrote to our elected officials asking for their help. At our last meeting we petitioned Congressman Stenny Hoyer, a Maryland(not from our district) member of the Conference Committee, who was not listed as a co-sponsor, for his help in keeping the Udall Bill as passed by the Senate in the Appropriations Bill for the Departments of Labor, Health and Human Services, Education, and Related Agencies. We received no formal reply, but I feel that our little support group may have made a difference in the final outcome. This year the governors of Virginia and Maryland issued proclamations recognizing Parkinson's disease and proclaiming a certain month as Parkinson's Disease Awareness Month. Several other states joined in. The national organizations joined forces to push for the Udall Act. APDA and the National Parkinson Foundation (NPF) both contributed to the effort by providing staff in Washington, publicity, and other help. The Parkinson's Action Network (PAN) was the basic driving force in formulating and lobbying for the Udall Act, but it is far too small to accomplish what was done without help from the major national Parkinson's organizations. The Parkinson Disease Foundation (PDF) was an early supporter of the Udall Bill and supplied financial help when it was needed most. The United Parkinson Foundation (UPF) joined in with the PDF in the effort and has now merged itself into the PDF. Several local Parkinson's disease groups with no national affiliations joined in. Many people with Parkinson's in foreign countries asked over the Internet what they could do to help. This was a no lose effort. The few thousand dollars we raised on the Eastern Shore with our Walk-A-Thons look awfully small compared to federal funding, but our few dollars are still important in the search for the cause and cure for Parkinson's. =0CDIRECTIONS TO ATLANTIC GENERAL >From Salisbury, take US50 east (toward Ocean City). Do not take Route 90. Go past Berlin's first two exits. Turn right onto Route 113. Immediately get into the left lane. Turn left at the first intersection and Atlantic General is near the end of the first street on your left. THERE WILL BE NO DECEMBER MEETING Christmas and New Year's are traditionally family times. Our next meeting and newsletter will be in January, 1998. We will probably meet in Salisbury at Asbury Methodist Church. DISCLAIMER At the suggestion of the old 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. The end of 1997 is drawing near. Have you gotten used to writing =FE1997=FE on your checks? Do you still want to write =FE1996=FE? Are you= still in the eighties? Get a stiff upper lip and prepare for writing 1998. You will be used to i= t by 2000. Merry Christmas and Happy New Year Will Johnston =1A ---------- > From: Charlie Huddleston <[log in to unmask]> > To: Multiple recipients of list PARKINSN <[log in to unmask] > > Subject: New Member > Date: Monday, November 10, 1997 11:24 PM >=20 > Dear list recipients, >=20 > My mother was diagnosed about a year ago with Parkinson's. I was a seni= or > in college at the time, trying to get in medical school. Thankfully, I made > it, and have been, along with trying to keep up with all my studies, > research about Parkinson's. Mom is still in the eaerly stages, with little > or no tremor, and increasing weakness in the right upper extremity. > Basically, aside from weakness, and incoordination, she's doing well. > Recently, I found out that acupuncture has beenn used to treat PD, and was > wondering if anyone has any specific information or experience with tha= t > approach to treatment. Thnks, and may God bless, >=20 > Charlie Huddleston > M1 > ETSU James H Quillen College of Medicine > Johnson City, TN