DocJohn,

I wanted to just say +1 to LFAC thanking you for this space where we all have a voice. I haven't been as active here lately so was not wise to any newbies making trouble (I have Soccertese looking out for me on that- ha). It just seemed like at first glance he was genuine and I tend to like to believe that people are decent at heart.

My space research reference was less a comparison and more a comment on priorities and processes. Just saying we have spent years throwing money at various disorders to see who finds the needle in the haystack first. It just seems that like the saying goes " You cannot expect a different outcome if you keep doing the same thing over and over". I see this in the end as a political issue; we all play a part in this.

I don't mean to oversimplify disease etiology not one of us has all the answers. Many researchers and doctors do what they do out of genuine care for others. Eventually, though one has to wonder why no one in their ranks stand up to say hey we seem to be stuck; maybe we should review what we do know and then come up with a few different ways to get our holy grail.

No one consciously conspires to keep people sick but in not stepping up and starting to scratch our collective heads in this and start to see varying theories and dissenting views as adding vigor to the scientific process, it has the same outcome. This is when it becomes easier to shrug our shoulders and say it is too complex, we are doing all that we can. Are we? Quite honestly we seem to know more about particle physics than we do about the human brain. Again, if we approached this with common sense and with a plan, we might be years ahead.

DocJohn is right; we are just discovering how plastic our brains are. We can no longer look at the body in parts if we want a full understanding of the brain and all its wonders. I have been following a brilliant neuroscientist, who simply by listening to a patient and applying his natural inquisitiveness, to finding a "cure" for phantom limb pain and paralysis in amputees. It involved having the patient move his attached hand in front of a mirror and something in the visual cortex dampened the brain circuitry sensing there was still another limb there. In essence, he had a learned paralysis and in using this doctor's mirror box costing less than $5 to construct he unlearned the paralysis and is a much happier person. That scientist is now studying how this might help PWP and MS regain function. So simple, yet complex.

While our understanding of the brain is new, innovative response to patients and neurodegenerative disease is not. What in our environments have remained constant throughout all that time? PD goes back to ancient history. Metallurgy and microbial infections, autoimmunity, all these avenues should have been exhausted ages ago. When we can without a doubt say we have exhausted all the obvious culprits then I will say for sure it is complex, but even the most basic questions go unstudied or understudied. Maybe we are making this far more complex than it is. A lot of bright well, educated people are searching for us does, yet they will not find the answers when they are looking at the same thing they were 20 years ago. Do a lit review on any given theory of PD. Things that we often think of as novel sit around for years. That is my criticism lies- the process and system needs to be changed somehow.

We all need each other to see results. This is so beyond conspiracy to me at this point. Without considering epidemiology and patient lifestyles we will likely not get very far. Scientists need to learn that the fuzzy data they so hate (they always complain of our faulty memories) is needed is key to substantiating theory. Remember it took a scientist infecting himself with a bacteria to be heard; I don't think anyone wants go there with PD. Patients want to help.

Thanks, Laura, Upon reflection, I understand the frustration of pwpboy; I too have written so many letters/emails suggesting/pleading/referencing new avenues of research/clinical trials to no avail. I usually do not receive a reply, or if i do it is the generic "we are unable to consider this at this time". I have given up. I no longer care if there are studies to determine if statins , SLCO1B1 mutations, and PD are related (I know they are) or if statins and having one risk allele for Gaucher's triggers a lysosomal storage disease (which has been reported for G6PD and McArdle's--though NO ONE interested in looking at the possibility of statins triggering adult onset of Gaucher's. Hello Israel!). Or perhaps it is both of these mutations coupled with taking a statin that results in PD like illness. In addition, the potential for Ibogaine's useage in PD because of its primary mechanism of increasing production of GDNF (and it's an oral drug) is ignored by every person/entity to whom I have written. I am tired; my husband's PD has progressed considerably so that caretaking consumes most of my waking hours.
I do not think it is a conspiracy to keep one chronically ill. I think scientists/physicians are not accustomed to listening to patients; they know what is best, which frequently translates to furthering the research for which they are already performing and for which they require continuing funding. In addition, I am just a patient's wife; what could I possibly know about PD?
With all the above, I still have faith in a foundation like MJFF (even if they discounted my suggestions for research) and am hopeful for 23andme (though sharing DNA data with pharma makes me angry). Gotta have hope in something at this point. Though I do understand the pwpboy's anger/frustration.