boann,
good thoughts - i want to voice our[gdnf advocates] concerns and why we won't let this go until every avenue is checked, every door closed. Up till now patients have been more or less viewed as a lab beings. That of course is changing and from listening to patients, we are learning that some things work for some people and other things work for others. So who do you sacrifice? Do you abandond another generation to slow, early, suffering and death or do you use what you have to treat people that can use it?

GDNF shows that potential, even pump infused.

Paula

exercise is good
 

The new American Academy of Neurology Guidelines released last spring said

"...noteworthy conclusions from the literature review were that there are currently no proven neuroprotective strategies to slow disease progression and that no vitamin or nutritional supplements have any proven role in the treatment of Parkinson's disease. On the other hand, there are some approaches - including exercise programs, physical therapy and speech therapy - that have a useful treatment function."

more info here
http://www.pdf.org/Publications/news...6/up_close.cfm

So ....... exercise seems to have the best KNOWN treatment effect.

BUT - I don't think that supplements, vitamins, "alternative" treatments have been ruled out - just not studied enough or studied appropriately.

If vitamins and supplements make you feel better, move better, then why not take them if not toxic?

Any research that can be done in the area of understanding and preventing cellular death is important.

Jaye,
Perhaps you have not realised but I did not write this article. I only tried to help Hannahbanana to translate the article into uinderstandable English. I see no reason why should defend it, I am too busy on this auction.
I have seen work published showing neuroprotection can be demonsatrated, but it would take me too long to unearth it. You could do a search and I am sure you will find some data.
Good luck
Ron

If you want to start a thread on the topic of Treatments, I will be happy to stick it. Just PM the link when you've done it.

I hope that providing new journal articles here won't be discouraged. Not every one of them will be the "magic bullet", but someone might get something out of them, just to even understand the "climate" of PD research.

While this article seemed somewhat vague, the following line was the one that gave me some hope:

I would have to get the entire article (which I don't have access to) to see just how far along and just what exactly they are testing.

But I did want to share it here, not as a moderator, but as a forum member.

Drug companies would want something profitable.

totally agree, paula!
 

because - from what i hear - the symptomatic benefit from GDNF was so dramatic for so many, i tend to forget that it is thought to be neuroprotective/restorative - i would *certainly* include it on a list of non-levodopa-centric therapies to explore - anything that relieves symptoms without causing debilitating side effects that need 2 or 3 other drugs to control is ok in my book - neuroprotective or not!

as far as PWP being lab animals, you aren't kidding. I know there is at least one organization out there trying to change this, but at this point, the whole research enterprise - from researchers to institutions to industry to funders - has the latitude to be as impermeable as it wants to be. researcher doesn't like a question you ask about their study (like, "um, so, you kinda claimed you identified a causal relationship without providing any incidence rates - what's up with that?") researcher can just ignore you. researcher only wants to talk to members of the club? you never hear from researcher again when you reveal you are just a person with the disease they study. Journal, institution, funder, pharma company - *none* of them is under any obligation to listen to anything anyone outside of the club has to say.

it is hugely frustrating, and i haven't been wrestling with anything nearly as perplexing, opaque, frustrating and complex as Amgen/GDNF.

so yes, i agree 100%.

boann

you know what really bugs me?
 

It's that all these millions of dollars are going into stem cell and gene therapy research. If I've understood it correctly, those both require brain surgery, right? Now if there are 100,00 of us in Canada, and about a million in the States, just how many of us are going to get brain surgery in a timely fashion? Not too many - if you're young and healthy and (have good medical insurance if you're American), you're likely a better "candidate". Everyone else will be patted on the head and offered a little more of the old drugs.

I suppose (being a Gemini I can always see both sides of an argument) that they need to do the basic science. But it isn't going to be practical for a very long time. Look at how long we have to wait for hip and knee replacements, can you imagine how long you'll wait for brain surgery. Or how much you'll pay.

Wendy,

"One less invasive way to achieve this goal would be to manipulate existing stem cells within the body to perform therapeutic tasks. For example, scientists might design a drug that would direct a certain type of stem cell to restore a lost function inside the patient's body. This approach would eliminate the need for invasive surgical procedures to harvest and transplant stem cells."

http://learn.genetics.utah.edu/units...ells/scfuture/