For anyone who is in the Washington DC area and would like to attend the following lecture, I'm enclosing relevant info (at the end of this message). This lecture is on the subject of Alzheimer's, however, there is a similarity between the two diseases, especially in the areas of possible causes and treatments, although the two disease attack different parts of the brain, the underlying mechanisms are similar enough to warrant a closer look. The subject of this lecture is more than just the usual regarding AD, but talks about its prevention and even reversal. (I have an summary of some longevity conference in which he had made a presentation regarding reversal of AD dementia in a NJ artist). I personally am planning to drive down from NJ for the lecture for my personal enlightenment, and a friend who's father has Alzheimer's is also going to attend. I will attempt to inform the list after I return if I learned anything of special applicability to PD. The lecture is being sponsored by the Well Mind Association of Greater Washington, Inc. If anyone would like to contact them, you can do so at 301-949-8282. They have a newsletter, pamphlets, etc. on mind-body medicine type of subjects, and also give referrals to alternative health care doctors, etc. If I'm correct, the woman I spoke to there the first time I called, was the one who related to me the story of the man who managed to keep off of the standard pd drugs for the first 15 years after diagnosis. This was one of those friend of a friend sort of relatioinships and anecdotal stories, but nevertheless, ANY positive story is worth recounting due to the excess of negative ones. There was a recent article in the health section of the Washington Post on neurological diseases, in which the neurologist from Tufts University in MA (I think that's correct), grouped AD, PD, and ALS together (which is not necessarily incorrect to do so, however...) as diseases that were unquestionably UNIFORMLY FATAL (or something to that effect and equally drastic)! Well, I can't say in this format what I really think of that comment, I will leave it to the imagination, but it isn't pretty. Comments like that infuriate me, NO ONE is going to tell me what my future holds. To that comment I'd like to say, (and I think I will in a letter to the editor of the Post) that LIFE itself is fatal by definition, and comments like those serve no purpose but to suck the life out of people. I recognize that in general these diseases are often fatal, but I do not believe that someone who survives, and very well thank you, with pd for 40+ years (as has a woman I met at the PD forum in DC last Sun.) is suffering from a fatal disease. Cancer and AIDS (in relative terms) are often fatal, with death occuring usually withing a couple years (altho' some survive much longer as well). Pd patients are usually around for alot longer and I feel long enough not to be considered as having a fatal disease. I know I for one am too busy living with this disease to worry about dying with it. In a related vein... My acupuncturist has found an article, taken from a chinese medical journal, about chinese medicine and pd. It covers causes, diagnosis, and treatment, mostly in chinese medical terms (like chi, yin, liver wind, etc), and it does state that it cannot "cure" pd, but that especially when started early and depending on the type of pd (as defined in this system there are 3 types), it can be effectively used at a minimum to control symptoms somewhat and reduce the need for drugs (the disease will in this case continue to progress, but the drugs required would be less, therefore prolonging possibly the other side effects of high dosages of sinemet that occur later). And at best, it can supposedly halt the progression of the disease where it stands. This therapy incorporates acupuncture (including a sub-specialty called scalp acupuncture), herbal remedies, and diet. Why is this type of information never picked up by the media, or by the national pd groups? Sure, it may still need further research and proof (especially to convince westerners), but most of the existing western theories and possible new therapies are also in the same stage of research and proving. Acupuncture at least has been around for thousands of years. I have no idea how long the specific treatments for pd have existed, depends on how long pd has been around and its prevalence in China. Even the exact mechanisms and efficacy of therapies like Eldepryl, believed also to slow the progression, are still being debated, and some believe still unproven (I, however, am taking Eldepryl to halt the progression, I hope). Someone else also posted recently about another person who has managed to halt his disease's progression by following a diet contained in a book (Diet for a small planet?). This is good news that needs to be shared (do I sound like a preacher yet?) In one of the national pd group bulletins a while back, someone wrote in asking about Ayurvedic and PD. The doctor and patient neither one knew how to spell it, but the doctor discounted it and dietary therapies as not being cures. So what? He doesn't have a cure either. Why is it then that NIH's Office of Alternative Medicine (OAM) is sponsoring research into Ayurvedic and PD, and I heard possibly homeopathy and pd? These programs are never mentioned when the topic of PD research is discussed in formal circles. Is it that these alternatives are not taken seriously, or that those who report on these health issues do not want to seem "flaky"? There have been alot of "flaky" conventional treatments (such as sucking blood from already weakened patients with leeches) throughout history as well. I am sure some of these other alternative topics are being looked into, but they are never mentioned in public discussions, journals, or whatever. As far as a "cure" goes, I can live with what I've got, and if I can keep it at this stage, I personally consider myself "cured". I realize some pd patients are more advanced, and research into pallidotomies, fetal transplants, etc. is very important to them, as it would be to me too should I ever get to that point. I am not belittling the existing research, I just am tired of reading nothing else in the media or elsewhere that is positive or that deals with not only treating the disease once it's advanced, but even more so, making sure none of us ever have to get to that point in the first place. There are people as well who ARE living functional, productive lives, for many years (perhaps longer than those around them). This number may only now be a very small percentage, but it doesn't need to be so. The loss of productivity by those in the larger percentage group who want to work and contribute, and who can't, is a major concern and cost to the public. To change this percentage ratio the first step is to change focus, or more exactly, to expand the focus, so as not to exclude any one area. Prevention of pd altogether and delaying its progression should receive as much attention as dealing with the more advanced problems. This is starting to happen, but slowly. The doctor who made the comment in the Post article mentioned did talk about hope and how people are finally becoming more hopeful with the discovery of newer therapies like the growth factor. But his previous comments regarding an ultimately fatal prognosis (as things now stand) ruined it, at least for me. Obviously, if one were to look at the chinese method of dealing with pd, they don't consider it automatically fatal, or beyond our current level of control. One major factor in controlling it is attitude and I don't think any of us should accept less than a positive conclusion to our stories. Even death itself is not a failure, and there are alot of supposedly "disabled" people who have contributed more to society (see PBS 3-part series recently aired on "people in Motion") than many "abled" people (no offense to them either - the definitions of disabled and abled anyway are not set in stone). So, now that I've finished "preaching" or whatever it may be called, I want to make it clear that I'm doing it not to offend anyone, that all views and needs are equally important, but I really feel the need to stir things up a bit. So much for being a passive pd "victim". Like the motto of the PD forum in DC this week, "Silent No More", I figure it's about time to stir the pot a little and change some pre(mis)conceptions. Actually for me it may be good to be continually bombarded with people telling me how this story is going to (negatively) end, because I have yet to do what I am told (ask my parents). When I am asked, however, it's a different story, but so far I don't see anyone asking me how I think I'll end up, just telling me. Oh well, their surprise! Anyway, finally, here's the promised info from the flyer I received: VERY SPECIAL ANNOUNCEMENT! THE WELL MIND ASSOCIATION OF GREATER WASHINGTON, INC. FREE PUBLIC LECTURE "RECENT DISCOVERIES IN THE PREVENTION AND REVERSAL OF ALZHEIMER'S DISEASE" by DHARMA SINGH KHALSA, MD (President and Medical Director of the Alzheimer's Prevention Foundation, Tucson, AZ - and who I believe has an AD home page on the WWW) SUNDAY, MAY 21 AT 2:30 PM HARRY PUTT AUDITORIUM, NORTHWOOD PUBLIC SCHOOL, 919 Unversity Blvd., Wheaton, MD. Directions: From Beltway, follow Connecticut and then University; 1.6 miles after crossing Georgia Ave., stay to left immediately after light at Arcola Ave., and cross into school entrance. Turn left and auditorium is on right in building with stainless steel figures on exterior wall. (I would perhaps suggest calling the Association for further details). ********* Hope to see some of ya'll there maybe. Hope I didn't offend anyone by my views, but after all, they are only my views, mixed in with a healthy dose of devil's advocate! Wendy Tebay