Rick, what WE call on and off, and sometimes our physicians do too, is the wearing on and off of medication.

The inexplicable on-off phenomenon that you have described is the true one.

It is not so often talked about, and doctors strangely do not often seem to recognise it, is it not properly in the medical literature, or has it faded from view as we have become a prey to the increasing drug cocktails and their myriad side-effects, so we can no longer clearly discern what is happening.

For me this is something that is emerging after i simplified my meds routine because I started to think they were doing memore harm than good. I feel that the 'real' parkinsons is stepping up for me to recognise it, and see what it is doing......... however reading fiona's post today has really got me in a tizz.........


So much is not known - though I spent an evening day before yesterday with the son of someone who recently passed away from late stage PD, drugs get slowly withdrawn when they cease to be effective, and to limit hallucinations. He was not happy with either the understanding of PD or the treatment his father received, but was only too aware of the dreadful toll the real underlying condition takes. So this is not something to underestimate, many patients like this only ever get to doctors late in progression, having put down many of their symptoms simply to 'getting older', and so are not overmedicated and messed about with in the first place.

We are between the devil and the deep blue sea, and posts like this that remind us of how the criteria are not fixed points, but vary with a sort of medical fashionability.

I am sure the best of doctors are aware of this, but wonder anyway about the levels of general ignorance that I hear about.

A recent example of this is a directive in the wake of the sinemet CR shortage, where nursing staff are instructed to substitute the missing 100/25 CR tablet with a regular one of the same apparent dose.......

I guess there will be lots of sleepless patients in nursing homes, and staff won't know what hit them........ and once their medication has worn off there will be other issues too, and some study will put it all down to some mysterious syndrome that happens in PD patients at 4 am, especially if no one ever bothers to reverse the directive, because the regular tablets are so much cheaper than the CR ones!!

Such basic mistakes in understanding do not give me hope that the true on-off that you describe here and that Laura and you have looked at will not be completely mistaken for something else altogether.........

Lindy