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To: All There have been two responses referencing PD as being inherited. This comes from an APDA symposium last Saturday in New Jersey where Dr. Roger Duvoisin stated that PD was inherited. He made the following points: When a neurologist asks a patient with PD whether anyone else in the family has PD, the positive answers indicate a roughly 15% genetic component. However, this is not a very thorough determination considering the following: 1. You have to lose most of your dopamine producing cells before you show symptoms. 2. A lot of people don't know very much about the health of their relatives. 3. The median age of onset of PD is 75. Many people die before this. There was a study by Dr. Daniel Brooks of identical twins in which one had PD and the other didn't. A PET scan showed brain abnormalities in both. Dr. D. believes that a single dominant gene is responsible, and they are now looking for it. It hasn't shown up yet, and in order to find it they are looking through the entire genome. The most disturbing news was reference in recent articles to the statement that the age of onset decreases in succeeding generations. For those new to the PD world, Dr. Duvoisin and others in the early 80's were involved in a twin study where one twin had PD. At that time the results of the study included that PD was NOT inherited. The results of the study were questioned for a number of reasons. One reason was due to the inability to determine if the unaffected twin was in very early stages of PD. The scanning technology of today was not available. By reopening the study and applying today's scanning technology plus having 10 years pass, the results were different (see above). Now you know the rest of the story. TO: Gerard.G.J.vanRossum I think it is wonderful that Colin Hamilton is cycling around Europe. I would like to use your comments in my next newsletter, if you don't mind. Say hello to Rita Weeks at the Yoppers meeting. Rita is a member of this group and is traveling with her husband who is attending a research conference. She made contacts with the YOPPERS on this listserver. TO:Robert Dean Roghair Your granfather is right about one thing, the cost of PD meds is high, actually too high. Something we all should know about PD meds is that it often takes 2 to 4 weeks for a drug to build up in our systems. The true theraputic effect is not realized until then. I have been told that Sinemet requires 2 weeks to reach the full initial theraputic effect. Only if there are adverse side effects should a drug be discontinued. Also your physician should be notified of the adverse effects and the fact that you have stopped the drug. Often some of the adverse side effects can be resolved and the patient can continue on the drug therapy. The first drugs showing difficulty initially were Parlodel and later Permax. I am told that all of the new drugs under test have this property. On timelyness of taking drugs. Sinemet has a half life of 90 minutes. If a pill is skipped, the theraputic loss is over a relatively short period. Parlodel I think has a half life of 6 hours and Permax has a half life of 9 hours. The drug Cabergaline (sp) has a half file of 64 hours. Missing one of these pills can be more serious. TO: Fred Schneyer Finally on Liquid Sinemet. The current issue of the APDA newsletter has LS as the lead story ( Dr. Matthias Kurth at Barrow Neruological Institute ). I have sent direct mail to Fred about this. I also suggested the following for people who go from OFF to ON with dyskinesia and back to OFF. The order of therapies may be: 1. Sinemet CR 2. Liquid Sinemet 3. Duodenal Infusion (maybe) 4. Surgery (Pallidotomy) I am on (3) and it reduced the wide swings. I also have had (4) and it reduced the OFF period and removed dyskinesias. I might also add that in my current newsletter is information on problems of freezing, festination and akinesia that Tom Riess is working on. It turns out he has the wild swings from akinesia to dyskinesia with no middle ground. Recently I asked people with dyskinesia to try covering their eyes with various combinations of a red or blue filter. I will let you in on the reason for the request. For some people, one or more of the combinations has removed dyskinesia immediately. (This also has worked for akinesia in some people.) Regards, Alan Bonander ([log in to unmask])