Hello to everyone. I wanted to acknowledge that after a period of intense discourse, writing, pushing for ideas, etc., that I plummeted suddenly from the scene. First, I wanted to say that on on no account was it because of a reaction to any individual. On the contrary, I have deeply missed everyone, and hope that the summer has been good in some way to each of you. What's been happening with me is that I suddenly came to a total realignment of my feelings about my illness, and am finding that I need to pursue a totally new way of thinking about it. It's a very personal thing, partially in response to actually having written and read a lot about PD. And it's a result of encountering different points of view, some of which were familiar to me before, but now are hitting me in a new way.

I agree with the thought that PD is not any one discrete condition. I think it is rather a collection of related symptoms. I think who the patient is, is of far more relevance than constricting the description of their aggregate symptomology into what is ultimately an arbitrary categorization. I feel that this is what happened to me when I was diagnosed as the age of 34, and that I was fed into perhaps what was a well-meaning Parkinson's machine, assured that any response I had to the medication was proof positive that I had embarked on the first stage of an inevitable decline. I don't believe that any more. There are increasing reports of the percentage of Pd patients who are probably misdiagnosed - from 25 to 30 percent by many observers. Some of those had to be on PD meds, so it means that one can have a response without actually having PD upon autopsy. I feel that many more avenues could have been explored before sentencing me to what has seemed pretty much life in pharmaceutical prison.

I have read a number of fascinating books about the brain lately, and other articles about the placebo effect, that have shown me how acutely the mind can affect the body. And I think the body is entirely capable of taking a diagnosis so much to heart, that it keeps replicating the symptoms in the way that the mind imagines is inevitable. I do not believe now that "progression" is certain or absolute. Nor do I believe that there is going to be one cure that totally does the trick and reverses this thing. I do believe that there are a great many things that can help many different people in many different ways. This whole conundrum is so multi-dimensional, that that has to be the case. One size can't possibly fit all, and clinical trials or medical approaches that are based essentially on that idea don't seem believable to me any more (leaving aside the giant issues of conflicting interest and corruption). I think anecdotes might be where it's at, a lot more than has been accepted. If the placebo response varies significantly in trials of new drugs that are conducted in different countries, so much so that it affects the marketing of those drugs, it seems clear that differences in cultural approaches to the body - only one variation of a huge possible number of different contributing influences - are actually about as strong as the drugs themselves in many cases.

Many of you know this, or are already proceeding in some degree with some of these assumptions already in place. I got to a point where I had to really change the way I think about myself. I have stopped telling myself I have Parkinson's, and stopped telling others, too, as much as I can. I do have some issues about being reliant on these little dopamine pills I'm taking, but confident that I can find a way to live a full, satisfying, and actually improving life, even when they are still in the picture. I am interested in finding as many positive things to help me as I can. SO I had to stop the immmersion into PD activism for the time being. I am not looking for a monolithic cure. I have to stay out of being involved with assaulting the incredible shortcomings of the medical system for the time being, because it makes me too angry and frustrated. And that stress was not helping me.

So I know this is a somewhat self-centered approach, but I have to do this right now to save my own life. Because the more I got involved with trying to solve the problem of Parkinson's, both for myself and others, the more it claimed my identity and my energy. I have to let go of that identity, and be a different person.

I really, really care about everyone here, and I want to stay friends, etc. And I plan on contributing again. Shortly I am headed overseas again for a few months to investigate some different approaches to health once more. I may not get back to this board so frequently for a while - anyone that would like to stay in touch, send me a personal message and we can trade emails or whatever.

I have had an incredible summer of swimming with my 80 year old mother every day. She has been in a wheelchair and has not fully walked in 15 years or so. Her diagnosis, based on bloodwork and the physicians' opinions, is rheumatoid arthritis. She found a doctor who believed in her ability to heal, and believed she was worth it. She threw away most of the medication. Today she got her second knee replacement, and is expected to be walking and even folk-dancing again. She is planning a trip home to Europe. Every day this summer as I swam beside her, I saw the years drop away from her face and being. She would drag herself out of the water clutching her walker, each day getting a little stronger, totally wasted and atrophied muscles redefined. She looked to me like Venus on the Halfshell, rising from the seas. I never expected to ever see that happen. It is possible to return to the living rather than sliding inevitably down the chute. We try. We keep trying - right now I'm focusing on all the grains of sand that are in my hands, rather than those slipped away.