Well, this is a huge thing. Most diseases, but it seems PD especially sits right on that nexus of mind and body. Yes, it is very physical and people never seem to be able to understand what we are going through, even those nearest and dearest to us. That feeling that you are just barely surviving dose to dose is horrifying, and very difficult to comprehend.

But just thinking how my symptoms get worse if certain people are in the room, even if I'm not aware consciously that I have conflicted feelings about this person, is demonstrable of that subtle interplay between the factual world of chemistry and the mysterious inner world of the heart and spirit. Many people have heart attacks because of shocking news or great stress. It may have been a subjective emotional response that triggered it, but honey, it's still a heart attack. This is such a failing of modern science, to reduce things so much thinking that it's only either one thing or another - and if it's deemed only perceptual, to think that somehow it's unworthy of addressing or taking seriously, or that we could just change it if we really wanted to...

Labels - I know that some people feel really validated and taken care of by the fact of their definitive diagnosis. I feel some of that. But I felt it was a life sentence when I was diagnosed at age 34 or so, and my response was how dare you decide what my future is going to be. I truly believe that many of us are so sick because we expect to be - how could we not? The mind is such a curious thing...how about the fact that often when a toe is removed and transplanted for patients who have lost a thumb, that after some period of time it stops looking like a toe and more like a thumb? What the mind practices and rehearses is hugely significant. But yet, things like the placebo response are dismissed as 'just' the placebo response, where if some obscure chemical gets a 30% response in patients, everybody's all impressed.

So personally I resent the label of my diagnosis, and how it causes others to judge me and pigeonhole me, and I feel I have to shoulder all their fears and blame about me and themselves, as well as deal with all of mine! But then I do have very real physical symptoms - and I am appalled, for instance, that nobody takes responsibility for the side effects created by our medications even enough to give us helpful advice or to avoid interactions between all these substances we're advised to ingest.

SO it's a lot of stuff. And yes, institutionalized racism and sexism and ageism cannot help but affect everything hugely. Why do we in the US often ignore all the work that has been done in other countries - sometimes as if never had been done like with mucuna - until it's been repeated by US scientists. How is that even good science????? ????

But the whole mind-body thing - I really suffered when I first got diagnosed because my parents freaked out in response, and became Christian Scientists because they felt so abandoned and hopeless for me. Which then meant for ten years I could never even discuss my symptoms or treatment options with them. They finally quit, when feeling desparate and helpless during my first horrible dystonia attack, they called their practitioner to pray for me, and she refused, saying "well, she's still on medication." They were like, screw this - after all that money we've given them over the years and now in our most dyer moment they won't help? We're outta here.

There's more to say. Have to chill a little now, but knowing me, I undoubtedly will have some further remarks.

Best to all of you on this lovely Sunday....