Parkinson's Disease Tulip

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Old 05-07-2015, 07:09 PM #1
lurkingforacure lurkingforacure is offline
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Default the more we know, the more confused I get!

Could someone help me understand where we stand with PD research? I have spent the last many years reading about electrical therapies for PD, drugs for PD, cellular therapies for PD, growth factors for PD, nutrition-based therapies for PD, fecal transplant possibilities for PD, and on and on. While I tend to want to believe PD could be helped or even cured by food/nutrients/good gut bacteria, that possibility does not reconcile in my mind to the fact that DBS and tCMS help PWP (if the cause were nutritional deficiency/ies, wouldn't sending current through someone's head do nothing? and yet so often it helps!)

It seems that the more I read, the less I really know and the more confused I get! I guess I should be grateful that PD is being researched on so many diverse fronts, but still...

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Old 05-08-2015, 09:19 AM #2
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Originally Posted by lurkingforacure View Post
Could someone help me understand where we stand with PD research? I have spent the last many years reading about electrical therapies for PD, drugs for PD, cellular therapies for PD, growth factors for PD, nutrition-based therapies for PD, fecal transplant possibilities for PD, and on and on. While I tend to want to believe PD could be helped or even cured by food/nutrients/good gut bacteria, that possibility does not reconcile in my mind to the fact that DBS and tCMS help PWP (if the cause were nutritional deficiency/ies, wouldn't sending current through someone's head do nothing? and yet so often it helps!)

It seems that the more I read, the less I really know and the more confused I get! I guess I should be grateful that PD is being researched on so many diverse fronts, but still...
Personally, I don't think there is any $ in a cured disease. Treat the symptoms and the $$ keeps rolling in. Show me a major step forward and I'll eat my words but until then, hungry I am.
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Old 05-08-2015, 09:41 AM #3
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hi lurking,
i'm not following research like i used to so this isn't exactly a well informed reply but i'll give it a go.

pd research just isn't getting as much attention as alzheimers and cancer, etc. so you don't see articles summarizing and discussing pd research in general, you have to look for that info on youtube, cut your search criteria down to 1 month or less or on the national pd websites, NPF, FOX, etc.
there's also a lot less posting and discussion on this board which leaves a vacuum.

I also think after the many failures with gene therapy there is less "excitement" about research working on a "cure".

there are many gene therapy trials, the alpha-synclein vaccine trial, there's supposed to be a fetal transplant trial in europe, some stem cell trials.

we'll get some news soon:
Mark your calendars for June 14-18, 2015 and join us for the 19th International Congress of Parkinson's Disease and Movement Disorders

presentations are buried in here
http://www.mdscongress2015.org/MDS-F...limProgram.pdf
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Old 05-08-2015, 09:51 AM #4
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Default PD and the news

I agree, it seems that there is a lot of stuff thrown at the fan with little of it sticking. We no doubt not getting the press that alzhiemer's is
getting but not to be dismayed we are going to benefit from their research as well. I think that there are a lot of therapies that exist today that were not available in the past and more so for PD.
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Old 05-08-2015, 12:41 PM #5
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Default Prions, the Pipeline, and the Latest in Parkinson Disease

http://www.medscape.com/viewarticle/844223
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Old 05-08-2015, 05:54 PM #6
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I heard a talk about this at a scientific conference a couple of years ago. The speaker has both a PhD and a medical qualification (impressive!) and he made the point that PD is probably not "one disease". Rather, it is a multitude of conditions with some clinical signs in common.

He drew an analogy with cancer, which is also not one disease. Because of that there is not a single "magic bullet" cure for cancer and there probably won't be one for PD either.
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Old 05-08-2015, 08:02 PM #7
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I very much agree Wiki, that PD is a range of problems that all result in diminished dopamine in the brain.

I also agree with harry that there is no incentive for a cure. IMO lots of valuable research could be done but all these associations are just driving money to drug companies and "awareness" campaigns which seem to be geared to just raising more money for the associations. I think we need an association where everyone that works there has PD. Then we might see more urgent action.

Lastly, I would say that you should go out of your way to read some of the foreign studies. They often do a lot to try to understand PD better and they also don't overlook what they cannot patent, since they are not usually run by a drug company. I could provide links but just a little poking around here should net you something to chew on.

Then when you find something promising to you PICK IT and try it if you can. All this studying won't get you anywhere if you don't act on some of it. Take them step by step and be patient. That is the hard part because as soon as you get started on one thing, another interesting thing comes along. You must do one at a time till you se if it helps you.

It took us all decades to get here .. if there is a "cure" odds are it won't be something that happens overnight.

Best of luck to us all. We really are on our own here.
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Old 05-12-2015, 11:36 PM #8
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Default What we have is........

a disease that the only real "cure" was described long ago, and even it was very problematical, however the glimpse of a cure was realized. To many problems with fetal cell transplants into the brain stem. Yes this very dated attempt to cure PD, got bad press and no support from the sheepish researchers who are capable of inventing a viable implant A misinformed public, religious conservatives, and no real will to cure old people, so that they will just become long lasting dependents, among many other factors, put our hopes back at least 10 years. Now we have techniques that could initiate a functional cure with cultured cells not derived from another human beings cells, but our own biopsied and cloned DA neurons, harvested by micro-techniques, and coaxed to be DA progenitor cells that would do the job of allowing at least a chance at relieving a lot of the misery of advancing PD, at least with better odds than current therapies. But the world isn't ready to cure diseases that are chronic and occur mostly in the elderly. Population control you know. We will need to have some sort of serious pandemic of PD, before any of the so called researchers on pd come up with a viable easy solution to the problem of PD
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Old 05-13-2015, 08:41 AM #9
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a disease that the only real "cure" was described long ago, and even it was very problematical, however the glimpse of a cure was realized. To many problems with fetal cell transplants into the brain stem. Yes this very dated attempt to cure PD, got bad press and no support from the sheepish researchers who are capable of inventing a viable implant A misinformed public, religious conservatives, and no real will to cure old people, so that they will just become long lasting dependents, among many other factors, put our hopes back at least 10 years. Now we have techniques that could initiate a functional cure with cultured cells not derived from another human beings cells, but our own biopsied and cloned DA neurons, harvested by micro-techniques, and coaxed to be DA progenitor cells that would do the job of allowing at least a chance at relieving a lot of the misery of advancing PD, at least with better odds than current therapies. But the world isn't ready to cure diseases that are chronic and occur mostly in the elderly. Population control you know. We will need to have some sort of serious pandemic of PD, before any of the so called researchers on pd come up with a viable easy solution to the problem of PD
And that my friends is it in a nutshell. From my perspective a least.
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Old 05-13-2015, 10:29 AM #10
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Personally, I don't think there is any $ in a cured disease. Treat the symptoms and the $$ keeps rolling in. Show me a major step forward and I'll eat my words but until then, hungry I am.
I respectfully Disagree. Hepatitis C now has a cure at $1000 per pill.

The drug Sovaldi will cost $1,000 per pill. A typical course of treatment will last 12 weeks and run $84,000, plus the cost of necessary companion drugs. Some patients may need treatment for twice as long.

Hepatitis researchers call the drug a landmark in the treatment of this deadly infection. More than 90 percent of patients who get the new drug can expect to be cured of their hepatitis C infection, with few side effects.

I believe that PD will also be cured sometime in the near future! If the cost was $84,000 and there are 1 million PD patients in the US thats $84 Billion dollars! I would find a way to pay for it for sure!

http://www.npr.org/sections/health-s...er-drug-prices
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