For the Quackery Police
 

from pipeliner email:

http://www.thestreet.com/story/11382...-products.html

what do you think?

poo-poo
 

I'll be the first to say I am so weary of hearing about these tests to detect PD. Who wants to know they have PD, Alz., ALS, whatever, right away, when there is still no cure, no treatment that slows or stops progression? We don't even have a treatment that works well for everyone with what they call "PD" most of the time!! Knowing that you have PD earlier rather than a few years from now when it is staring you in the face is supposed to do what? Help you write your will? Pick a guardian for your kids? Please. The stress of that knowledge, in the absence of a cure or treatment that slows the disease down, would not be a good thing, but that's me. Personally I think it would be a much better expenditure of time and money to be working on an actual cure.

Now, maybe we will learn something from these "diagnostic tests" that will lead to a cure, but I haven't seen that happen for any disease. Correct me if I'm wrong, though, I'd love to be wrong on this.

And I find it VERY interesting that the few psychiatrists who have opined about this have all said that they would NOT want to know if they have the gene(s) for Alz., etc. They know what stress can do.

there's no progression slowing pd treatments likely because there has been no diagnostic test for presymptomatic pd. if i had known i was developing pd years before i exhibited symptoms it would have been invaluable for me, my relatives who might develop pd and my family. and for researchers developing a preventive treatment, plus would supply more DNA samples to look for genes that predispose you to pd. and yes, i would certainly live my life differently, certainly to the fullest. and if the test was cheap enough it could be done often enough so researchers could determine what environmental factors might be causing pd rather than guessing at something that happened in the past. if i could help 1 person avoid pd then the test is worth it.

I wish they'd stop...
 

...toying around with us. When I tell anyone I have PD, as a courtesy to ease their minds about why I walk so funny, don't know their names, etc., the usual response is "hey, at least you can get an operation for that," or even "thank goodness there are going to be so many new treatments for that really soon." It makes me want to scream.

Today we got a phone call from a friend in Arizona telling us that there was a new machine developed at the University of Virginia which would fix Pakinson's Disease in ten seconds and that we should see it on ABC News' website. Here's a You Tube link. Guess what? The machine is being tested on Essential Tremor patients, not Parkinson's, yet on the newscast the doctor claimed that this machine would do "focused Ultrasound" for any brain disorders such as Parkinson's Disease, etc.

Read this stuff if you want to, folks, but I'm sick of watching all the researchers in the world conjecture about their own careers (with all due respect and gratitude to those good docs who work so hard for us). This week marks my the beginning of my 14th year participating in this Forum community (first MGH, then Braintalk, then NeuroTalk), and I figure we've been cured about three times a week in that time, LOL. :D

By the way, in contrast to the normal responses to my having PD (see above), the usual reaction to my having breast cancer is "oh, I'm so sorry to hear that," or "you must be having a rough time." I get friendly visits, offers to rides every place I want to go, sympathy about being in chemothereapy, and every kind of encouragement, as well as about half a dozen churches full of people praying for my recovery. I'm sure all this attention helps my attitude, at least, but I do mention to some that I'd rather have breast cancer than PD because the breast cancer looks like it's curable.

Paula, I love your post title.

Jaye

Jaye,

People sympathize with you if you have PD, but if you have cancer they empathize. I suppose that's the difference. Nobody wants sympathy, for anything! It's just somebody thinking, "So glad I don't have that to deal with!". It's about pity and distancing oneself. Empathy is action-oriented, putting yourself in someone else's shoes and asking yourself, "How can I ease this person's suffering?".

And there are no Get Well Soon cards for chronic ailments. There ought to be.

early detection
 

The whole furor about early detection is really about neuro protection.

Any neuroprotective qualities that a therapy might have can't be detected with certainty without a biomarker that allows tracking of disease progression as distinct from symptom alleviation. Once there is a biomarker that allows the tracking of disease progression and therefore allows the tracking of a therapy's impact on disease progression, there will be a dash for the holy Grail of creating a neuroprotective therapy.

That is where the early detection comes in. Like Soccertese said, all those people who will have had their Parkinson's detected early will be able to benefit from a neuroprotective therapy, once there is one.

Nothing wrong with either of those things – a neuroprotective therapy would be a win-win – or at least a semi-win-win – people with Parkinson's would win because their progression would be slowed down (but not cured hence the "semi-") and whatever pharmaceutical company or companies produced the therapy would win, for obvious reasons.

But neuro protection, which is commonly referred to as the biggest unmet need in Parkinson's disease, is a very long-term goal. First, they have to find a biomarker that will track disease progression. Then they have to find a neuroprotective therapy, which is never been done, obviously.

But I think we have another unmet need, that is just as big and quite possibly achievable in a shorter timeframe than neuro protection.

If you take a quick look around on the site for people's descriptions of the levodopa experience once side effects start, you'll see the word "hell" several times. Any therapy with side effects that first put you in hell, and then can only be alleviated by brain surgery is, in my opinion, inadequate.

So, in my opinion, there is a second biggest unmet need in Parkinson's disease, and that is a better symptomatic therapy. Levodopa is a short-term solution to a long-term disease – nothing more.

And there are no hurdles to jump, like finding a biomarker, to be able to test symptomatic therapy – we've got that down. So if only because of that difference, finding a better symptomatic therapy could be achievable in a shorter term than neuroprotection.

And this singular focus on neuroprotection means that few resources are being directed towards a better symptomatic therapy.

Data Liberation...
 

I think we have all questioned why levodopa is so revered as our gold standard. While I agree it allows people to feel a little less compassion for us, and it may be hell, and yes, DBS is a non-lethal form of what was formerly prescribed as a "drug holiday", at least we have it. I thank my lucky stars while cursing my fate at the same time. I could not imagine enduring this without it.

However, I respectfully disagree that too much attention is given to neuroprotection. If you do a Pub Med search there are around equal number of hits for both "novel therapy" and "neuroprotection" (each yields around 3400 articles). The problem we face is that the vast majority of the possibilities are never pursued. Why is that? Well, I can't put a name to it other than to say the disease research community is a free for all or in more modern vernacular "a hot mess". It is beyond repair; it needs to be imploded and redesigned, and regulated or accountable. It doesn't necessarily have to be governmental but someone needs to be named the grand poobah. Someone like Sergey Brin might do nicely.

It is clear that for real progress, scientists must work together on a global level; meanwhile, we are still waiting on a "national" disease registry. Instead because we have primarily a profit driven system that fosters competitiveness and secretiveness, we do not share discoveries but rather hoard them; securing patents and then sitting on what should be freely available, if the motivation were truly humanitarian rather than financial. Add in the FDA's ridiculous expectation that every potential new treatment pass an archaic placebo trial showing efficacy, and we're doomed. This results in little more than generation of "me too" drugs and a pre-occupation with dopamine. Since no one is held accountable for anything, nothing changes.

I guess the way I see it is we treat each and every incurable, chronic and/or degenerative disease as if we were waging war. Scientists become our soldiers an form platoons on up the chain of command. In other words we need an open, collaborative environment where people work together toward a common goal. We have declared war on drugs, so why can we not have a war on PD?

hmmmmm
 

I searched Pubmed with the following in the search box:

Neuroprotecti* Parkinson's

This should capture any entry with the words neuroprotection and Parkinson's or the words neuroprotective and Parkinson's – I got 3771 hits.

Then I search the following:

Novel therapy Parkinson's

I got 1405 hits.

Then I searched the following:

"Novel therapy" Parkinson's

That will only capture things that have the words novel and therapy right next to each other, along with the word Parkinson's – I got 13 hits.

We must be doing something differently.

I agree with almost everything you said – our two points don't have to be mutually exclusive, I don't think – well, at least in my opinion they don't have to be.

I fear that gratitude for the presence of levodopa, while completely understandable, considering that there is little else, softens the urgency for an alternative.

And, in my opinion, randomized double-blind placebo-controlled trials do exactly what they're supposed to do, and we need them to do that. Granted, I could always read more about this subject, but I've read a fair amount about it – about the placebo effect, I mean – and based on what I've read, I believe it is necessary to briefly separate the placebo effect from any actual therapeutic benefit just to confirm that there is actual therapeutic benefit – and it is briefly that this happens – the only time the placebo effect is separated from the actual therapeutic effect is during the trial or trials. In all other contexts they are firmly glued together and we get the benefit of both.

But everything you said about the system needing to be taken apart and reassembled, and it being profit driven not humanitarian driven and the need for accountability – I agree with 100%.

continued...
 

Oh, and one more thing. I recently learned that the FDA does not require that a new drug be more effective than existing drugs – it only requires that it be more effective than placebo.

There is so much talk about the need for innovation – when companies can maximize profits with minimal risk by making me too drugs because the FDA doesn't require them to make drugs that are better than what we already have, is it any wonder we don't have more novel therapies?

If I had to pick one change that I thought would get the biggest bang for the buck in terms of increasing innovation, that would be it – the FDA should require that new drugs be more effective and, preferably, (a girl can dream, can't she?) Have fewer side effects than existing drugs. That would be one way to end the me too drugs, wouldn't it?

Addendum: or even, in the case of something like levodopa, which is extremely effective until it becomes unbearable, the FDA could require that something be as effective, not more effective, but also require that side effect profile be much more manageable.

it's not just dopamine
 

Other cells are missing. we are low in noradrenalin, we have unbalanced aceptycholine and glutamate-and low brakes [Gaba]. Right now we are asking for something better than sinemet. But that doesn't solve the problem. It makes us hyper. our speech races, etc. If we take meds for the brakes [gaba] or to slow acetylcholine, reduce the anxiety [big symptom] they make us more tired than we already are. However, they take away the hyper side effects - for me even the dyskinesia.

dopamine works - but we are out of balance.