Ok, here are some of my recent developing thoughts about this whole PD mess. We are all primed to find that one thing, that key that is going to make the whole thing go away, and life go back to either how we remember it or what we thought it would be like...I say this as an early onset person, and maybe it's different for others. It seems that many things that we try often seem to help when we first try them, and we get excited about it, and sure that we have found that key...and then after a while, the body seems to just re-establish its resistance to any kind of help or remedy of this situation. And we feel depressed and squashed by the thought of even trying anything again --I don't mean to assume or presume, but am basing this on my experience.

But as Rick and Ibby I think are saying also, perhaps there can be a long-term curve of recovery. Which means that there will be off periods, bad times along the way, but perhaps slow, incremental and subtle changes for the better, so when you look back, over a couple of years, you are doing things better than you were, and while not cured, health is starting to get the upper hand again, or while you still struggle with various aspects of the condition, others have subsided or are improved in nuanced ways.

I think to have this model of partial recovery, one has to adjust one's expectations. No, you won't be the way you were overnight. And for myself, I have to be strict with my own thoughts, remember that I ultimately have the upper hand and am in charge of my own destiny somehow, and I say I am going to get better. And I need to keep this going during the bad periods, and use this energy to keep looking for ways to improve what I'm doing, to be healthier, to relieve stress of all kinds, to live a better life, so that is what starts to shape the foreground as well as the background of the disease experience.

This disease is so subject to our emotional approaches to it, even more than many other conditions. I think expectations of all kinds have a lot to do with shaping our reaction and hence our course with it. So for me I think it's a strange combination of acceptance, surrender, and strong determination, and a sense of humor, and nurturing gratefulness, and mourning the losses along the way, trying to lend a hand to others who are down...a whole way of being and defining life, I think.

I love it that Rick feels he has improved in many ways - others here also have mentioned their various experiences. Twenty years in now, and in my 50's - well, I really, really want to get off or reduce these meds, and the off periods still are a big pain...and the dystonia can still be frightening and out of control - but dystonia is about 5% percent of what it used to be, and I am dancing again, I am working again, I am happier maybe than I have ever been, more in control of my emotional life than ever before...and every time I see my neuro, he says, "you are not only not deteriorating, you are turning back the clock. Even regular people aren't supposed to do that."

I don't relay this to brag at all, and believe me, I have many difficult times. But overall there is a curve towards a mature relationship with this condition that signifies something, some kind of healing process....it's not sudden, sometimes barely visible, and not what I thought my life would be about ideally, but somehow tangibly moving towards something better....