Either way, girl, we are all suffering to some degree with this thing, but have to point out that there is more than one view about these things. Some of the PD plus conditions go through people like wildfire, very hard for all family and friends. You are having it tough I know but hang in there and times will improve. Just take it very very slow. I had a taste when I backed down some years ago after only a few weeks where I took more to survive very long days.

You do not have to follow you doctor's I week plan, you can negotiate with him, so long as he can see you are not going back up again he should help you to hold it together.

I know you would like to help so that this doesn't happen to anyone else, but someone might just think this can be done easily, because they do not know.And who knows whether they will be the strong person you seem to be.

The main thing is that patients should really be campaigning for more information at point of diagnosis, that is where it really needs to happen.

People need to be told that these are extremely powerful drugs, and advised to wait and be observed for a few years before going onto medication if possible, to firm up the diagnosis, and to give them space to make decisions that are not a knee jerk reaction to devastating news.

While the best doctors may do this, or maybe they will, it certainly doesn't happen for everyone. The shame about this is that there actually are older drugs that did not have such powerful side-effects, that are able to alleviate things in early Parkinsons - the ones that were there before dopa and DA's, and could be used instead of these heavy duty ones.

I would like to see exercise on prescription for PD, at all stages, but especially early, before the treatments become worse than the disease.

I really believe that patient education is a crucial factor in this. If the empowered patient KNOWS what other conditions can cause their symptoms then they can ask, and insist on being tested. if they don't know they are more likely to be passive patients. Everybody ought to be kept informed from the beginning.

I have to say though that Dystonia can come with parkinsonism, and Strokes and TIA's can cause parkinsonism. Lyme is mainly in the US and needs it's own awareness campaign, I believe that there are tests? Correct me if I am wrong. Migraine should be recognisable to doctors who are worth their salt. Again if patients are informed they can challenge the diagnosis, and as awareness becomes greater and participatory medicine (yea) starts to gain momentum people will feel more comfortable doing that.

When you factor in parkinsonisms from various causes that is a lot of people, and mostly they won't be helped or will only be helped in the short term by dopa. But they are hard to spot, and that is why doctors should be talking to us more, and looking at us more. So that THEY know what they are looking at. On the other hand the literature for doctors is getting better, and sooner or later there will be a spectrum map of this these disorders that will indicate to doctors in a clearer way the best way to treat that subtype.

Who knows, one day they might even decide to treat the root causes instead of the symptoms. (well, something is causing those neurons to die or keel over, or go on strike...)

And I absolutely agree on being advised to boost, I am certain that once the initial 'starvation' has been addressed the dose should be lowered to optimum, not raised, as a first option while still on a very low dose. But that can only be done when it is really early.......

Always drawn back to one fact, and that is that neither they nor us really know. We are all in the dark and guessing, so caution should be the way to go....

Take care, and keep safe, wishing you all luck with this

Lindy