Lang is trying to cover his *****. He knows what the truth is; the fact is that the major researchers have done a great job ignoring facts about PD that didn't fit into their paradigm of the disease. They were wrong; it is good that they now recognize it, but they are never going to admit they were wrong.

The ultimate reason for the patient to be part of the research discussion. We know the disease; they don't.

.... how can there be a post dopamine era without a post dopamine treatment? my radar is not picking up on this....

l-dopa is not a perfect diamond
but it has not yet been surpassed
it's failings have not been addressed

neither have the failings in thinking,
like, when the cascade of events in our brains happens
why do people think the lack of neuromelanin in our p/m brains
is the most important sign of pd
when there are living specimens
ready and willing to be questioned
examined
at all stages of this condition
and show what PD
ACTUALLY IS

moreover
why do they have to prove it in creatures that cannot speak
when there are millions of creatures who can!

and again
all the non human models of pd
are not for us
not to prove what our condition IS
we are the proof of what our condition is....

our positions as stakeholders are different..........

Why are we expected to get dementia?
Will these assigned by others expectations determine our outcome?
I reject the notion that we will get dementia;
Different doesn't mean dementia.
Just like it doesn't mean retarded.

paula

we probably won't ................

http://emedicine.medscape.com/article/289595-overview

but look at what's wrong with the end of this article, only a patient could understand!

Carey,

How very true this is in regard to patient involvement; in essence, we should drive the direction of research. What I find most troubling about all this is that much of the research I have unearthed on other areas of the brain and other neurotransmitters at play in PD dates back to 2000 if not earlier. It's not like this is newly discovered or anything. Clinicians have known since treatment for PD began with levodopa that it is by no means treats all our symptoms; it just plain cannot do it, given the complexity of the disorder and possibly the existence of sub-types.

In other words, researchers for the most part have been running in place looking for levodopa adjuncts or extenders or whatever- they have been playing it safe for at least a decade! It's like no one dare push levodopa off its throne. Like you said, largely this happened because the patient is so disconnected from the research process other than as guinea pigs at clinical trial time. Still, it is appalling to me that we have non-dopa things happening that result in disability and research never rose up to meet that need- why?
I think I read a researcher express that dopamine has become dogma in neurology and movement disorder treatment- it's an absolute truth that no one dare question or touch- and as such it's held us back for far too long.

Lindy,

There are some promising new treatments on the horizon. I've been working on reviewing treatments on the PD Pipeline and ran across this extremely promising new therapy targeting other neurotransmitters. The Addex ADX48621 is a glutamate inhibitor that they describe as a dimmer switch between neurotransmissions- it fine tunes everything and doesn't directly control any one chemical. While pharma is often very generous in their claims...I can't help but get excited when I read this at the Addex site:

Recent preclinical research in rodent and primate models of PD show that mGluR5 inhibition alleviates PD-LID. The clinical and preclinical evidence suggest that mGluR5 inhibition also may prove to be a dopamine sparing drug, or even a standalone alternative to levodopa, the long-standing gold standard therapy for PD.

mGluR5 is found in regions of the brain considered to be key control points in the neuronal movement circuits thought to be responsible for the abnormal signaling by the neurotransmitter glutamate. Perturbations in glutamate signaling (along with disruptions in dopaminergic signaling) is believed to be an underlying cause of movement disorders like Parkinson's disease. As such, inhibiting mGluR5 could act to re-establish normal movement via a non-dopaminergic mechanism, thereby offering a dopamine sparing therapy.

Separately, preclinical findings also suggest that mGluR5 inhibitors may be neuroprotective and may, therefore, hold potential to treat disease progression.


I was happy just to hear we may have an alternative in our lifetime let alone it may be neuroprotective (don't they all try to stake that claim!) I find this really exciting and hope it gets fast tracked. MJFF has thrown 4.5 million to research into the glutamate receptor, so I'm thinking that Addex may be onto something.

How is it delivered? Fortunately, no brain rewiring or hockey pucks in the gut- it's an oral suspension...more pill popping, but if it can take the place of levodopa and have a longer effect than 2 hours, hey, I'm all for it!

If we can all hang in there a little longer!

Laura

Laura, we are still all holding our breath -
when the theory results in a treatment -
it's a therapy when it gets into the hands of patients
a treatment when it is prescribed -
i am not being negative
just realistic, there have been so many
promising things sitting just out of reach
on our horizon......

Here's a good article about new targets, in PDF form. Let me know if you can't see it:

Novel pharmacological targets for the treatment of Parkinson's disease


AH Schapira, E Bezard, J Brotchie, F Calon … - Nature Reviews Drug …, 2006

http://www1.tu-darmstadt.de/fb/ch/Fa...en/nrd2087.pdf