Quote:
Originally Posted by indigogo
I think this is an incredibly important study with far reaching implications for the care and treatment of PD. It closely matches my experience of living with Parkinson's.
Doctor's who prescribe agonists do not seem to understand the consequences; they require close monitoring, an activity not supported by our current health care system. Agonists are handed out freely; patients are on our own.
Notice that this research was funded by PDF. I've sent an email to Robin to thank him for the funding and asking him, "what now/next?"
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Carey,
I completely agree with you that this has implications that we might not even foresee. It's important in many ways but mainly because it empowers us. We moan about how researchers and pharma don't listen to us, or that even our doctors don't listen- and we're right to do so. Honestly, no one is much listening to us because their world is not our world; everything is proscribed to happen in a certain way, it's a system that we're not really a part of other than as an end user or as a 'patient' in the most generic sense. This article tells us that our neuros can bridge the divide.
That's exactly what happened here. This is incredibly radical if you think of it. Most everything happens to trickle down from research into clinical practice, and it happens slow as molasses. Here we have something from the trenches, the nitty gritty of what is going on with us, the crappy quality of life some of us grasp onto, and it's passed onto the academics who basically should be scratching their collective noggins and wondering why they never knew any such phenomenon even existed. It can serve as a springboard for research in the neglected area of psychiatric aspects of PD, or even as a way to highlight how woefully inadequate our treatment options are- it's systemic, folks.
In the end, it's pretty exciting because it empowers us. Most research trickles down from the very abstract and after many years into clinical practice. Here we have what we experience everyday in the trenches, the crappy quality of life some of us cling to, this is what might inform the research; it works from the bottom up. More importantly it highlights how important dialogue is for our worlds. If we want to influence the research community, we need to encourage our neuros to be more like this exceptional doctor. She may not be folding proteins, but it is groundbreaking stuff nonetheless in the sense that it elevates the voice of the patient. I'm hoping at the very least, it'll encourage doctors to start cautioning patients beyond the usual ICD disclaimer and allow for some substantive discussions.
Does anyone know...were both Mirapex and Requip part of this study? Or better yet, has any research highlighted prevalence of ICD in both agonists? I only know from talking to PWP that many had ICD issues with Mirapex but were fine when they switched to Requip...
Laura