What was fascinating to me about this article was the woman doctors comment on patients taking many medications, that often when you stopped all medicine the patients started to get better...... I know that for some of us that is completely out of the question, we are addressing shortages of vital chemicals in the brain, but exactly that attitude informed all my decisions on taking allopathic drugs prior to my PD diagnosis. I simply did not take any.

In the time since diagnosis my PD symptoms HAVE improved, but I also have had things happen to me that I am SURE relate to taking drug cocktails, and I have worked on simplifying things as a matte of surviving the treatment. Some of these things are breathlessness, very swollen legs and tendency to oedema, sensation of rapid heartbeat (something others have also reported), mental and cognitive affects, also loads of people have reported these, apathy which I find one of the worst things of all, and varying sensations of numbness.

So how does this relate to this article - well every drug that has been prescribed came with the 'current ideas' on particular aspects of PD, not all worked well, some worked appallingly badly, with dreadful side-effects, and did not address the problem, and I have had drugs prescribed to alleviate the side-effects of other drugs...... not uncommon in PD.

I'm relatively well informed - and I think about the people in care facilities where decisions are made for them, and the studies done based on their responses, and those of the many people isolated with their condition taking cocktails that are supposed to help them........ and I can count onto both hands the people I know who deteriorated badly on treatments led by current medical thinking. The latest of these is a warfarin-induced brain bleed in a young person prescribed this drug AS A LONG TERM TREATMENT with no parallel monitoring of blood viscosity.......

All of this thinking comes through influence from published and well promoted studies that 'prove' things.......... I am with Paula on this: it is not a good thing not to be able to trust easily, but on the other hand our times are not an era in which naivety is useful......

I took issue with the study on cycling as a diagnostic aid, heres why. Fifty percent of people already diagnosed with PD could be identified as 'atypical' OUT OF 4% of the study cohort. That equals 2%. But there is already a school of thought that says that up to a third of PD patients will be found post mortem to not have a damaged SN, and there is as yet NO proper analysis or conclusions on the very sticky subject of subtypes......... If we have a snowflake disease and there is no consensus on what those snowflakes look like, then how is a study like this useful........ Some of us can cut vegetables and some can't. Some can keep a tune and some can't. And exactly how far can these studies be taken into the realms of the fantastic.

And how about the individual who has doctors who do not question, and decide that their 'atypical PD' is not actually PD at all, denies them treatment for PD, and sends them off onto another journey to find a solution to the health problem they have, all as a result of this woolly kind of thinking. As nearly happened to me in 2005 when a study came out on the addictive nature of dopamine, and someone 'decided' that I might be just one of those people on the basis that my medication worked, and I anyhow did not have a tremor. This same person conveniently forgot to look at the fact that I was actually by that time on LESS sinemet than originally prescribed, having been educated by people on this forum on how to manage my medication properly!

People hardly mention the then fashionable and much discussed dopamine addicts. And other much more highly promoted things are also fading from view, one of these is COQ10, which was almost a required treatment at one time. In this case perhaps something has been lost that was valuable...... but how are we to evaluate everything we are bombarded with as patients.....

And the vast machine that exists to promote such studies..... and I am not saying that this particular study on ability to cycle is wrong, just that to be proven it needs more - more people, more time, and more people looking objectively at the conclusions it draws. A published study is not a proven truth, it is a hypothesis, a conjecture, like all scientific thinking, UNTIL proven right or wrong. Or until another theory knocks it of its perch.......... In every field of science that is how thinking works, from astro-physics to genetics.... why is medicine different.......

It is not by accident that these studies make it to the published journals, and on to the media. For that to happen it has to fit into the 'bias' that this article discusses. Press releases are all about promotion of some kind, whether it is personal promotion or corporate promotion. Sadly the bias is often informed by money, damned money......

Lindy

Lindy