You will no doubt have to work at connecting the dots on this post..possibly the side effect of not posting for awhile causing a severe traffic jam in the neuro pathways of my brain.

Firstly: is a diagnosis of something more agressive than "regular" PD necessarily a wrong diagnosis? It seems like many variations all start out on the same entry way but paths diverge and even converge over time. As an example: a woman at our last support group meeting said she was told she had Parkinson's plus. (I was away) and apparently she did not know what that meant so asked if someone could explain it to her. Of the 40 or so people at the meeting NO ONE knew what it meant! If I had been there I could have told her the cheery news. Along these same lines a friend was diagnosed with MSA after her PD got totally out of hand, along came a neuropsychiatrist who changed her antidepressant and she's back to a PD diagnosis. The moral of the story is you can never be sure because as was previously mentioned an autopsy is the definitive diagnosis, and I wouldn't even bet money on that ...but by then its irrelevent.

Moving right along here: I don't know about the USA, but in Canada it's best to not mess with your diagnosis if you get any kind of check from the govt. because they tend to want to re-evaluate you and we can all live without that stress.

I stopped giving people advice about their situation, because they do what they do anyway and its a waste of time and energy. If they ask me what I do about whatever the problem might be, I tell them and they are welcome to try it or forget it. I still cringe when I see people do things that are basicly just plain stupid,(but I do not throw stones because I still do stupid things too) Stupidity seems to run rampid in the human race.

I've seen enough Neurologists in the last ten years that I've learned it's the luck of the draw if you get one that graduated at the bottom of his class, and blessed indeed you are to get one that graduated at the top of his class. Or maybe thats the paradox... The brightest are sometimes the most arrogant and conditioned to think traditionally while the lower level ones may be the rebels who cause change. So life being what it is, either way you could be lucky or not. Life is an very interesting experience.

I doubt if guidelines will change or help anything. For my money, I suggest learn all you can and cull cull cull to decide what works for you and your little canoe on Parkinson's pond. Take everyones advice with a grain of salt and possibly a bottle of pepto bismol.

One observation I have made is that without exception the people with the least problems with their PD are people who just go about their business as if it doesn't really matter. That personality type that is rarely flustered about anything. They are always pleasant and unbothered by these little inconveniences and their PD never seems to be a big deal. I look at them and wonder "where did you come from?"

I have no idea if I've addressed the theme of this thread or not. Diagnosing PD is a hit and miss game...I doubt that will stop as perception and observation and concrete evaluations are all very individual experiences in our human brains, wether you went to med school or not. My vote still goes to intuition (yours) keeping a good diary, and trial and error and last but not least a good nights sleep! If you get it wrong you may die, but on the other hand we're all going to one day anyway. Then we can have tea and discuss it