Am I being naive or unduly optimistic in hoping that the stream of positive news stories regarding research over the past few months herald the genuine hope that solutions are within reach to slow down the progress or even cure cure parkinsons. Can anyone who is involved in the research give an honest opinion as to the latest position
we never seem to get replies from researchers, doctors etc, either they dont read this or feel they shouldnt get involved,
I am a scientist but not in the medical field, so I can't really give a correct judgement. But to be honest I do believe that strong disease-modifying meds and maybe even the cure is already present in the current pipeline. The problem is that it takes an incredible amount of years before these things are approved and sold.
First, there is GM1 ganglioside. As far as I have read about current clinical trials this is almost like a real cure (in a 5 year clinical trial of 80 patients it looked that people at end of trial were better than at begin of trial). I am still very angry that for some reason the medical world doesn't provide this to PD patients. I personaly contacted the MJFF to ask for the reasons. Then I started to investigate in literature and I could counteract all of these reasons. So as far as I concluded these reasons are all nonsense. I also contacted the doctor doing the research. He told me he had no time to respond at the moment, but that he would do so in future. I am still waiting ...
Second, there is LMTX. This is not tested on Parkinson's disease people yet but it slows down Alzheimer progression with 90 %. It removes the bad proteins in the Alzheimer brain. In 4 years this will be on the market if the clinical phase III can provide the same amazing results as clinical phase II. But LMTX (actually methylene blue) has also been tested on rodents with "PD" with succes. At the moment there is a clinical phase I of LMTX for PD. So this one is also very promising. I guess in 4-5 years from now clinical phase II results should be available; so at the same moment as LMTX is sold for Alzheimer. If these results are good, I am pretty sure that PD patients will get LMTX off label.
Third, there is cogane. Results for clinical phase II are very close to be collected. I think in beginning of 2013 they will reveal whether cogane is disease-modifying or not. I do have great hopes for cogane as this basically causes the brain to release the neurotropic factor BDNF. This is the same one that your brain release when you do sports. Given the fact of the many recent claims that sports is probably disease-modifying for the PD brain, I think this is very hopefull. The good thing is that with cogane the brain can possibly release more BDNF than when you do sports by just swallowing a simple pill. The problem is that if the results are good, a clinical phase III trial is still needed and we have to wait another 4-6 years for these results.
There is also a bunch of other things that are in the pipeline and can "cure" or "slow down" PD. There is BrainStorm Cell Therapeutics. They performed stemcell treatments in clinical phase I. The results were very good. One of the patients was a Jewish rabby and because he didn't have much time to live, they gave him a extra dosis of the treatment. The result was amazing. The guy could walk, speak and swallow normal again (http://www.algemeiner.com/2012/07/05/orthodox-rabbi-may-be-first-als-patient-cured-by-israeli-drug/). They inserted stemm cells in his brain that release neurotrophic factors. This can also be used on PD patients and I am convinced people with PD will benefit hugely with this approach too.
There are also other compouns in preclinical phase to stop or remove the clumped alpha-synuclein. The Affiris vaccine is even in clinical phase I already and in less than 2 years we will know the first results.
There is a lot coming and I think there are several things in the pipeline that will make a big difference to PD patients and slow down or cure PD. But I think the first real life changing treatment is 4 to 6 years away.
First, there is GM1 ganglioside. As far as I have read about current clinical trials this is almost like a real cure (in a 5 year clinical trial of 80 patients it looked that people at end of trial were better than at begin of trial). I am still very angry that for some reason the medical world doesn't provide this to PD patients. I personaly contacted the MJFF to ask for the reasons. Then I started to investigate in literature and I could counteract all of these reasons. So as far as I concluded these reasons are all nonsense. I also contacted the doctor doing the research. He told me he had no time to respond at the moment, but that he would do so in future. I am still waiting ...
Second, there is LMTX. This is not tested on Parkinson's disease people yet but it slows down Alzheimer progression with 90 %. It removes the bad proteins in the Alzheimer brain. In 4 years this will be on the market if the clinical phase III can provide the same amazing results as clinical phase II. But LMTX (actually methylene blue) has also been tested on rodents with "PD" with succes. At the moment there is a clinical phase I of LMTX for PD. So this one is also very promising. I guess in 4-5 years from now clinical phase II results should be available; so at the same moment as LMTX is sold for Alzheimer. If these results are good, I am pretty sure that PD patients will get LMTX off label.
Third, there is cogane. Results for clinical phase II are very close to be collected. I think in beginning of 2013 they will reveal whether cogane is disease-modifying or not. I do have great hopes for cogane as this basically causes the brain to release the neurotropic factor BDNF. This is the same one that your brain release when you do sports. Given the fact of the many recent claims that sports is probably disease-modifying for the PD brain, I think this is very hopefull. The good thing is that with cogane the brain can possibly release more BDNF than when you do sports by just swallowing a simple pill. The problem is that if the results are good, a clinical phase III trial is still needed and we have to wait another 4-6 years for these results.
There is also a bunch of other things that are in the pipeline and can "cure" or "slow down" PD. There is BrainStorm Cell Therapeutics. They performed stemcell treatments in clinical phase I. The results were very good. One of the patients was a Jewish rabby and because he didn't have much time to live, they gave him a extra dosis of the treatment. The result was amazing. The guy could walk, speak and swallow normal again (http://www.algemeiner.com/2012/07/05/orthodox-rabbi-may-be-first-als-patient-cured-by-israeli-drug/). They inserted stemm cells in his brain that release neurotrophic factors. This can also be used on PD patients and I am convinced people with PD will benefit hugely with this approach too.
There are also other compouns in preclinical phase to stop or remove the clumped alpha-synuclein. The Affiris vaccine is even in clinical phase I already and in less than 2 years we will know the first results.
There is a lot coming and I think there are several things in the pipeline that will make a big difference to PD patients and slow down or cure PD. But I think the first real life changing treatment is 4 to 6 years away.
Thanks for such an informative post Mr X
I don't pretend to understand some of the medical jargon but it does seem that when my wife's neuro joked that "there was never a better time to get PD" he was on the ball.
Lets hope that bureaucracy and lack of funding does not hinder the progress seemingly being made
I don't pretend to understand some of the medical jargon but it does seem that when my wife's neuro joked that "there was never a better time to get PD" he was on the ball.
Lets hope that bureaucracy and lack of funding does not hinder the progress seemingly being made
Perhaps someone working on research for Parkinsons UK, maybe even Dr Kieran Breen, Director of research could contribute to this thread or issue a briefing on the site summarising the current position or am I expecting too much.
I try to be as optimistic as possible for my wife but it would really be nice to have something to encourage us to cling on to.
I try to be as optimistic as possible for my wife but it would really be nice to have something to encourage us to cling on to.
The Research section is quite good but, naturally enough, is focused on PUK research. It would be good if they provided a table of all avenues of research and treatment development (especially the latter) with trial times and results. A bit like what Mr X has done. I can see difficulties with that but it would be very informative.
You are welcome 
. I am sure my summary is far from complete. There are so many things in the pipeline that I can't even remember all of them. For example, I know rapamycin is neuroprotective but because it weakens the immune system it is not seen as an option. But I know there was something else (I forgot the name) that via a different pathway (without weakening the immune system) lead to the same neuroprotection as rapamycin. I also know about reseach targeting MGluR4 receptor which will remove many of the PD symptoms (like stifness and non-motor symptoms) and at the same time be neuroprotective. I also know there are even more paths of neuroprotection but I just can't remember them all (Oh ... I just remember gou teng has a substance that promotes autophagy). It's just too much.
As far as your wife is concerned ... make sure that she does enough sports. At the moment this is probably the only thing you can do to slow down PD progression. I read several studies about it. Your brain size decreases from age 30 on. But doing sports makes your brain grow again. And tell her that the pipeline is more hopefull than ever. The only problem is that we will have to wait for it.
. I am sure my summary is far from complete. There are so many things in the pipeline that I can't even remember all of them. For example, I know rapamycin is neuroprotective but because it weakens the immune system it is not seen as an option. But I know there was something else (I forgot the name) that via a different pathway (without weakening the immune system) lead to the same neuroprotection as rapamycin. I also know about reseach targeting MGluR4 receptor which will remove many of the PD symptoms (like stifness and non-motor symptoms) and at the same time be neuroprotective. I also know there are even more paths of neuroprotection but I just can't remember them all (Oh ... I just remember gou teng has a substance that promotes autophagy). It's just too much. As far as your wife is concerned ... make sure that she does enough sports. At the moment this is probably the only thing you can do to slow down PD progression. I read several studies about it. Your brain size decreases from age 30 on. But doing sports makes your brain grow again. And tell her that the pipeline is more hopefull than ever
. The only problem is that we will have to wait for it.
Thanks Mr X she is certainly trying doing water aerobics, pilates, walking, cycling, exercising and using her wii fit to try and offset the disease as much s&s is possible.
Open message to administrators of this site. please get someone to provide us with a general summary of where all research is at along with anticpated times as to when it will actually deliver. we won't hold you to it, just want something to give us cause for hope than slowing down or even curing the disease is at least on the horizon