Boann,

Thank you for the number crunching; math was never my forté. I agree with you that many of the studies we run across are dubious at best given that we rarely have access to the full text to actually examine the numbers more closely. I do think that many of these studies would pack more punch if they did a cross comparison with prevalence in the general population AND came back with statistically significant numbers.

Given all this, I think the best we can do as patients as be aware that any type of dopaminergic therapy, whether straight levodopa or dopa agonists, can have devestating psychological repurcussions. I really think that all the hooplah surrounding the use of agonists stems from the numerous litigations involving the agonists and the obvious tie to the research funding grist mill - in other words, these are merely buzz words and perhaps a bona fide means of research dollars.

Don't these studies pretty much say all the same thing? I think it serves to highlight what Carey has pointed out...how wrong it is to hand over a script and to not monitor patients carefully. If more Movement Disorder Specialists began to adopt a holistic or integrative approach to treating us, I doubt we would have even these numbers to go on. I'm not saying the patient is victim here, and the neuro shoulders all responsibility in these cases, but there really is no need for any patient to step forward as uninformed on the behavioral side effects of treatment for PD.

Lindy, you make an excellent point: ...who for instance is documenting punding behaviours that people display in their homes, out of view, or perserverant behaviours that manifest in excessive anxiety which also come in on the compulsive spectrum, and have also been discussed over time on boards like this......and that can have equally devastating effects on day to day living.....

If researchers would turn toward these types of questions and actually examine how it impacts our quality of life...for now I think they are doing nothing but paving the way for law suits. It's a shame that the research couldn't be parlayed into understanding, for example, how this may factor into placebo effect. Is it then likely that clinical trial participants on agonists are experiencing this effect more so than others because of dopa supplementation or receptor stimulation? Please give us something we can use!

Laura

Just to be clear, I have the full texts of all of the studies i critique and i would be happy to share them with anyone.

also, my whole point in posting these is to show that these studies actually do not say what they claim to say - the first three cannot be said to have demonstrated a connection between the behavior and the drugs at all. i mean, not at all. if anything, the first and the third demonstrate that there is not a connection - the second demonstrates absolutely nothing.

perhaps this phenomenon exists - but the studies i have read either just pretend to demonstrate that it does or pad their numbers in various ways.

From Voon 2007 Archives of Neurology:

"The prevalence of hypersexuality in PD has been reported to be approximately 2.5%. The prevalence of compulsive shopping in PD has been reported to be 0.4% to 1.5%. "

The prevalence of hypersexuality in the general population is 5-6%.

The prevalence of compulsive shopping in the general population is 5.8%.

will edit to add sources later.

Boann -

Just what is your point? All the numbers and statistics in the world will not undo the damage done to the .000000001% (whatever!) of the population whose lives have been destroyed by the combination of agonists and their brains.

I think it is super you have managed to stay OCD free on your many years of mono-agonist treatment, but you are not making it easy for those, however few and marginalized, who are already afraid to come forward. As Linda indicated, how many go uncounted in the quiet privacy of their own homes? At least give people the room and courage to confess to their doctors about behaviors that might be connected to their treatment - don't give them further ammunition to hide.

The answer, as Laura and others suggest, are educated physicians who care about each and every one of their patients and their individual proclivities, and informed patients. Also, a non judgmental PD patient community who welcomes everyone seeking support. No one is advocating the wholesale stopping of the use of agonists - only being careful and vigilant when they are prescribed.

"The lady doth protest too much, methinks." ~ W. Shakespeare

Well DUH!!!!

How the heck were they supposed to know it was the drug that was causing the problem. Maybe the light bulb went on after the release of the initial study? Logic dictates.

Edited to add.....The only drug I was taking during that hellish time was Mirapex. Was switched to levodopa and had no problems on the OCD front. That 2003 study SAVED my life.

thank you for your thoughtful response.

the purpose of the AERS is to illuminate exactly the kinds of things doctors aren't looking for - the idea is that all this random adverse event and drug data is collected and later can be mined to see if anything jumps out that either no one has noticed yet or to see if there have been enough random reports of X to support the presence of a trend that someone has noticed but for which there is currently not enough intentionally gathered information to draw any conclusions.

so, it doesn't matter if doctors weren't looking for it - that is the whole idea behind the AERS.

and there was only a single report in the six years mirapex was on the market before the 2003 study. a single report cannot be said to support the idea of an association.

i will respond tonight when i have more time. thank you for asking.

Don't mention it.

I don't see much real discussion about the way that cocktails of drugs affect us wither, am I right in thinking that here we are talking about DA's mainly being added to ldopa drugs?

My personal experience is that plain sinemet as a monotherapy gives me few behavioural issues other than a tendency to want to sleep in the late afternoon. Add something else, or change the delivery to CR and that is a whole different ball game.

I've never been on DA's but am very aware that my medications change the way my days happen, alter things like motivation, mood and performance.

The people I know who take DA's say that this is even more so. This does not mean that they are not also having benefit from them, but I have to ask this question, if a drug that is designed to take away one symptom of 'dis-ease' but gives another equally bothersome, is it successful as a treatment or not....

An example, I take an anticholinergic drug designed to control urge incontinence which to me is as bothersome as the rigidity and slowness of PD. This drug also works on and improves those PD symptoms. And for this I am mostly grateful. What it does in addition to that is alter my perceptions so that I enjoy (cannot stop engaging in) repetive rewarding activities. These can be anything from a basic computer game like Tetris or solitaire, to vacuuming the floors, to being unable literally to stop reading till I am exhausted and my book is finished. To the detriment of all else. If I stop taking it then I am in waterworks hell.

So how many report these things, how many know they can. How many feel locked into taking a drug that gives something, takes something, but improves some aspect of unendurable 'dis-ease' that makes the trade-off just about, but only just, worth it?

As the old saying goes, it is statistically provable that anything can be proved statisitcally.......or something liike that.

Sometimes I could throw empirical science to the four winds, it is so flawed, how can a study of 60 people or whatever possibly prove the existence or non existence of anything in a disease with so much variation that nobody really knows what they are dealing with......... it's an Alice in wonderland world plus some more..... is it not enough that patients are saying, look at what is happening to me, and are not being believed......... or being categorised in judgemental ways, or worse they are so affected that they are unable to make good choices...... if we are taking medications for our conditions surely these are meant to IMPROVE our quality of live, not just exchange one set of problems for another... the difficulty of managing meds to get that benefit is something that is so time-consuming and difficult, that we need help with it not medical ennui, and corporate greed, not to mention skewed and biased statistics.

I have to stop this, now, because unless we gain a real voice, who is actually going to hear any of it.... I wish we could do an empirical ------y study of the things that shape our PD world, we could surely prove collective insanity at least!!

All added together, the total portrait of Parkinson's and everything about it is remarkably strange and surreal. Wildly dysfunctional; a system that is almost guaranteed to fail. I've seen a lot of things in my day, and let me assure, the Parkinson's situation strains belief, no matter if you look at it from top or bottom.
But I am very happy, that the pickled herring research group, after telling us 20 years ago that pickled herring can drive Parkies hog wild; now they have sent out a new report saying that pickled herring is not so bad for Parkinson's after all; but they did not be so bold as to actually say that maybe we could eat it now. Much more research will be required to determine if the crucial factor is the fish, or the pickling; or only if the two are mixed. Myself, out of solidarity with herring fishermen everywhere, eat pickled herring at least once a week, washed down with some really cheap railroad gin. I don't like it at all, but like sauerkraut, it's a cultural tradition that you have to pretend to like.