I have mostly done well on sinemet, always managed to keep doses low, and with the addition of entacapone, started to get PD to a place where I mostly manage - except for not being able to control the inevitable fluctuations. During the course of this year unwanted movements started to appear, mostly when out and doing things. Like Paula, I am good at ignoring things, and hate the whole thing of having to re-educate doctors and others who do not know about PD. It is a pet gripe for me that professionals are always saying that I do not look as though I have PD (no visible tremor). Part of the way it manifests for me is bladder problems, at home I control these by being vigilant, away I usually use a anticholinergic - in patch form these days - but over the years have tried several variations, different drug - similar effect, some better than others.

Due to a series of blunders prior to the WPC I did not manage to obtain any of these, and did the entirely stupid thing of restricting fluids, and wound up coming home to a dreadful UTI that was giving me very real practical problems. The missing prescriptions for patches turned up, I am now using them and into my second week.

EVERY TIME I go onto this class of drug I am struck by the difference in the way PD manifests. I wake up less stiff, more flexible, my medications do not wear off in the same way, and this time I can clearly feel that I am not getting the extra movements that have been appearing this year. In fact I am always closer to 'normal' where motor symptoms are concerned when on an anticholinergic drug. Most importantly my stride lengthens and the slowness and shuffle all but disappear..........

These drugs are now somewhat discredited for Altzheimers where they have probably been overused, as they contribute to confusion. Due to this and the fact that ALZ and PD are both seen as conditions of the elderly this discrediting process has been extended to PD, they are out of favour these days. My own neurologist was very sceptical when I raised it with him, saying they are old fashioned drugs and not used any more..... and would not discuss the PD specific anticholinergics that used to be used........ actually they were once a mainstay of PD treatment.......

They are specifically targeted at bladder issues, not PD, even though my urologist understands that his PD patients benefit from the non-targeted 'side-effects'............. I have had great improvement while on them, but not everything has been good, they do increase feelings of apathy, leading me to ignore doing things I KNOW should be done, and I become much less motivated all round. (But that is a biased view, I love being wholly engaged as a creative person, and can be to the point of ignoring everything else around me.......I call it creative flow, someone else might consider it OCD )

Paula has long talked about the balance of neurotransmitters, there have been lots of discussions over the years about different types of NT's, there is research into this going on in petri dishes all over the place, and even at the WPC some of the research seems to be around gaining a balance in neurotransmission that is not all dopamine related..............

So much that indicates our entire neurotransmission is thrown out of whack, with the decline in available dopamine being the trigger to a cascade of imbalance, and I think we CAN feel this in the way PD manifests. People describe fatigue, pain, dystonia, dyskinesia, apathy, depression, and more in ways that indicate that there is so much more going on........

IS exercise one of the things that can help modulate these imbalances? I think so, and that is why it works, it is activating and supplying receptors as well as keeping channels open, and I do realize that this is possibly where eastern and western thinking on health may start to converge...... that neurotransmission is uncannily similar to meridians.......

I've strayed a little in this, sorry Paula, but I feel sure this imbalance thing is a huge part of the 'why' of PD.............. and perhaps they do need to go back and look at why some of the older drugs were used for so long, and the improvements they brought......... I so agree on dystonia, it is usually a feature of my mornings, but not when on these drugs........ it goes from being distressing and very painful to being an occasional reminder.....

Why do I not take them all the time? They decline in efficacy for bladder problems after a while if they are used continuously, and I love being creative, the apathy that develops over time brings a very personal loss of ability that impinges on my identity......

Lindy