PARKINSON'S NEWSLETTER of the Delmarva Chapter, American Parkinson Disease Association January, 1998 - 4049 Oakland School Road Salisbury, Maryland 21804-2716 410-543-0110 e-mail [log in to unmask] Contents: Dopamine Agonists Genetic Rresearch Jim Maurer on Porcine brain tissue implants Udall Bill passage and thank yous State/area interest: Ms. Becky Dunlop new Johns Hopkins I&R Coordinator Silverman Voice Treatment Program at January 27 meeting R T Twigg obituary - Memorials- Snow policy - Feb meet date Disclaimer THE NEW DOPAMINE AGONIST DRUGS MIRAPEX & REQUIP During 1997 two new drugs for Parkinson's disease were approved for use by the F.D.A. Both new drugs are dopamine agonists [helpers for dopamine or dopamine imitators rather than dopamine providers] not derived from ergot. They will compete primarily with each other, Parlodel(bromocriptine), and Permax(pergolide). Parlodel and Permax are ergot derived agonists which have been used for years. To the extent they reduce dopamine need, they will compete with Sinemet. The first to appear was Mirapex(pramipexole) made by Swedish-American Pharmacia & Upjohn, Inc. and marketed in the U.S. by a group of German companies trading under the name Boehringer Ingelheim Pharmaceuticals, Inc. The press release by the drug companies stated it was not a large product for them and should develop annual sales from $100 million to $150 million. The press release added that side-effects, such as nausea, dizziness, drowsiness, or hallucinations may affect some people taking the drug. Other side-effects reported on the internet include headaches, dyskinesia, leg pains, weight loss (by a vegetarian), paranoia, and hypotension. This is a short list of side-effects for this type medication. Most users praised Mirapex. Many said it reduced their fatigue substantially and reduced ~off~ time. Many said they slept better. Many said they had to reduce their Sinemet intake. The highly dyskinetic Parkinson's patient we saw experimenting with virtual reality on video tape (Discovery Channel) said he had been able to function well with no Sinemet for three days and counting. Getting the dose right seems to require trial and error. The guide provided by the manufacturer recommends .125mg three times a day for week #1, .25mg three times a day for week #2, and .5mg three times a day for week #3. If a higher dose seems appropriate, .75mg three times a day for week #4, 1mg three times a day for week #5, up to a total of 4.5mg per day in week #7. Many report no improvement until the dose reaches a total of 1.5mg per day. Several users who stopped taking Mirapex reported extreme fatigue when they stopped abruptly. One former user reduced the dosage incrementally to zero with no ill effects. One happy user said, ~I think Mirapex is the best stuff to come along since sliced bread.~ Requip(ropinirole) made by SmithKline Beecham was approved by the F.D.A. in late September. It seems to have fewer side-effects reported than Mirapex so far and fewer glowing laudatory reports. Stomach problems and hypotension are the primary side-effects. One user's gall bladder was about to be removed until his wife noticed that his stomach pains got worse as Requip dosage was increased. Tightness in the chest and increased ~off~ periods were reported by some still on low initial Requip dosage. Almost universally, users reported that benefits were slow in coming. One English researcher is quoted as saying low doses shut down dopamine cells. SmithKlein Beecham recommends .25mg three times a day week #1, .5mg three times a day week #2, .75mg three times a day week #3, and 1mg three times a day week #4. On January 12 SmithKlein Beecham reported studies which found Requip to be better than Parlodel and equal to Sinemet in the earliest stage of Parkinson's. PD GENE IN ITALIAN FAMILY SEEN IN OTHERS The gene abnormality which apparently causes Parkinson's disease in one large predominately Italian family has been found in two other unrelated families. For a while it seemed that the particular gene sequence was in that one Italian family only. The two other families have apparently not been sufficiently researched to determine whether or not the particular gene abnormality caused Parkinson's in those families. Not everyone with that particular abnormality develops Parkinson's. The gene has also been found in rodents whose life span is probably too short for Parkinson's to develop. Finding this gene in rodents can make research go much faster since they can take our places in biological testing and experimentation. The defective portion of the gene produces a protein called alpha synuclein. Nobody has figured out what alpha synuclein does yet, but researchers are trying. They have found that it replaces the amino acid alanine in the amino acid threonine at the fifty-third position of that long string protein. Sound simple? Not to me. It does provide a place to start from in the search for the cause and cure for our problem. Until now, there was no real stepping off place in the search at the sub-cell level. The searchers are also looking at the closely related beta synuclein gene which could be a cause for Parkinson's and at other genes which may contribute to the various complications linked to Parkinson's such as hallucinations and depression. At the present time some researchers at Robert Wood Johnson Medical School are making antibodies to alpha synuclein to see how the regular threonine works compared to threonine with the mutant protein. Most of us find this totally incomprehensible, and it was far beyond the comprehension of the best of researchers just a few years ago. College courses of the 1960's and the 1970's never got into anything like this, at least at the undergraduate level. This is exciting stuff to researchers, and we wish them well in their search. Giant step advances may be just around the corner for us instead of being only for the next generation. JIM MAURER'S TALK AT NOVEMBER MEETING Those unable to attend our meeting with Jim Maurer in Berlin missed a real treat. Jim is a Parkinson's patient himself, an A.P.D.A. director and Northeast Area Chapter Representative, President of the Massachusetts Chapter, and a frequent observer in Parkinson's neurosurgery. He was present as an observer for several pig brain tissue implants into Parkinson's patients in the Boston area and, at the invitation of the Cubans, attended Parkinson's neurosurgery in Havana. The pig brain tissue implants seem to be working and may replace the human fetal tissue implant operation which has caused so much controversy. A report posted on the internet earlier this month by a pig brain tissue recipient indicated that he was doing well and continuing to improve based upon his own evaluation and evaluations by neurologists. This may be the Parkinson's surgery of the 21st century. Jim's presentation was definitely positive and encouraging. The research efforts in the Boston- Cambridge area seem to be getting less publicity than that in other sections of the country. Maybe we expect more from the people at Harvard, so a research success there is considered an everyday event and therefore not given the press coverage it would get elsewhere. Jim is doing well himself. Although he has almost retired, he is still producing small quantities of mail-order personalized pet identification tags at home. He is very active in the American Parkinson Disease Association and is working to make the organization more responsive to the needs of the Parkinson's patients and their families. He is one of the two most active members of the A.P.D.A. Board of Directors who have Parkinson's. We appreciate Jim's coming to the Eastern Shore to speak to our group - and to have a taste of the blue crabs we are famous for. UDALL BILL SIGNED INTO LAW BY PRESIDENT 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 is now law. The Udall Bill is an authorization to spend up to $100 million for Parkinson's Disease Medical Research. Unfortunately this does not mean that the National Institutes of Health automatically gets $100 million earmarked for Parkinson's research immediately. The money must come from the federal budget for 1999 which has not been finalized. A letter to President Clinton was circulated among the sponsoring senators asking him to put the entire $100 million in as a budget line item by itself. I feel certain that we will get most or all of the money authorized. The checks and balances built into our government seem ponderous and unnecessary when it is our research money that is at stake. The slow deliberate process is designed to prevent fraud and waste in our system of government. It's sort of like traffic lights. I don't like the red ones when they tell me to stop. It would be nicer for me if the red ones just applied to other people. I know they are necessary for safe use of our streets, so I stop for all the red ones - and a few green ones from time to time by mistake. Letters were sent thanking Congressman Gilchrest and the six DelMarVa senators for their help in sponsoring and passing the Udall Bill. We appreciate what is being done for us. MEETING 1 PM, TUESDAY, JANUARY 27 AT ASBURY METHODIST CHURCH IN SALISBURY JAN. MEETING ON VOICE TREATMENT PROGRAM The Lee Silverman Voice Treatment Program is now available on the Eastern Shore at both Peninsula Regional Medical Center hospital and at HealthSouth's Chesapeake Rehabilitation Hospital. The Silverman Program is designed specifically for Parkinson's patients and is a structured system which can be tailored to fit the needs of individual patients. This is a system I have seen praised by Parkinson's patients all over the world. We are fortunate to have as our speakers Ms. Tina Craft of P.R.M.C. and Ms. Susan Johnson of Chesapeake Rehab. Both of our speakers are speech therapists trained to administer the Silverman program. The program is not a ~one visit~ instruction session with exercise instructions for you to follow when you get home. It usually requires at least sixteen sessions over a minimum of four weeks. There is homework. This requires a commitment of substantial time and a desire to improve or maintain speech capabilities, but the rewards may be considerable. There is no guarantee, but the success rate has been extremely high in most centers. The program requires a prescription for speech therapy from your doctor and an initial laryngeal medical examination to determine if there are any structural abnormalities of the mouth or vocal cords not related to Parkinson's. This speech therapy is a medical expense and is generally covered by Medicare and by many private medical insurance and managed care systems. JOHNS HOPKINS NEW I&R CENTER COORDINATOR Ms. Becky Dunlop, R.N., B.S.N., is the new Nurse Coordinator for the Parkinson's Disease Center at Johns Hopkins Hospital and Coordinator of the A.P.D.A. Information and Referral Center at Johns Hopkins. Ms. Dunlop has experience in working with Parkinson's disease and support groups. She has worked with support groups on the western shore, so she understands our problems. I have not met Becky face to face, but we have talked over the phone a time or two. She plans to visit with us during the spring. Remember Johns Hopkins I&R Center can now be called toll free at 1-888-400-2732 when calling from the Maryland Eastern Shore. If you are travelling, that number, 1-888-400-APDA, will ring at the nearest APDA I&R Center to where you are calling from. In an emergency, that number could be a lifesaver. NEXT MEETING IN BERLIN FEBRUARY 24 The February meeting is unplanned thus far but will be in Berlin on the last Tuesday of the month. If you have an idea for a speaker, let me know. We are always looking for speakers with topics relevant to our needs and to keep us up to date. Maybe we should have a party since that happens to be Mardi gras. CALENDARS & 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. 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 ~Thank you's~ to several drug and medical equipment manufacturers who have made large contributions to APDA. ROLAND ~RT~ TWIGG RT died at the end of 1997. He was a faithful member of our group for a number of years until he could no longer get around. RT was probably the best known radio personality on the Eastern Shore. Parkinson's ended his radio career years ago, but the old timers remember him well. He was Delmarva's best when radio was at its best. RT loved life and lived it to the fullest while he was in his prime. His last live radio appearance was as a guest on the late Bill Phillips' WICO morning show Party Line with me, promoting our Walk-A-Thon. MEMORIALS AND GIFTS The chapter has received a memorial in memory of Lydia Jackson from her husband and daughters. Gifts to the chapter have been received from Peter Lamb of Cambridge and Bernell Fullerton of Berlin. Pledges [gifts] received in connection with our Walk-A-Thon were forwarded directly to the A.P.D.A. for use in funding medical research. We particularly want to thank the firms who bought advertising and thereby provided the tote bags and T-shirts used as premiums for the Walk- A-Thon and ~thank you~ gifts for our guest speakers. Thank you to: Bank of Delmar, Bank of Fruitland, Benedict the Florist, K. L. Bradford Ceramic Tile & Marble, Discount Carpet, Eastern Shore Forest Products, and Horner Honda. WEATHER & MEETINGS We have not had an official policy concerning whether or not our meetings will be held in the event of snow. Fortunately we have not had to make a sudden decision during the past few years. We plan to follow the lead of the schools in the area. If the public schools are closed or release their students early on account of snow in Somerset County, Wicomico County, or Worcester County, we will call off the meeting for that day and plan to reschedule it for the following Tuesday if possible. DISCLAIMER At the suggestion of the former A.P.D.A. 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. Note from a garage mechanic: ~I couldn't fix your brakes so I made your horn louder.~ Tonight's weather forecast: Dark with continued darkness until dawn; lighter during the day tomorrow. Will Johnston Will Johnnston A.P.D.A. DelMarVA Chapter Pres. 4049 Oakland School Road Salisbury MD 21804 USA 410-543-0110