Drivel: "Average of 8 Years"

What would prompt such a caption?!? And why would any rational person choose Wikipedia as a source for timely tips on how to approach and deal with their Parkinson's? Wikipedia is the last place to go for timely information about a disease as complex and ever-changing as PD (unless of course, like RP, you have a penchant for gloom and doom). A glimpse at the numerous outdated 'references' should provide some clues as to the relevance of the text to the here and now.

In these last few years alone (since the bulk of the aforementioned 'referenced' dire conclusions were drawn) numerous promising breakthroughs have been made on numerous fronts by numerous institutions in amazing new fields like nanotechnology:

Researchers are currently working to genetically modify blood cells to produce and deliver GDNF throughout the damaged brain. The belief is that these blood cells (macrophages) will then “teach” neurons to make the GDNF protein for themselves as needed.

Focused Ultrasound: Scientists have just recently developed a non-invasive means by which to penetrate the blood-brain barrier creating a new, more efficient way to deliver drugs, chemicals, stem cells, and/or therapies using focused ultrasound and 'microbubbles'.

Other institutions and universities are exploring the use of variously engineered antibodies to target misfolding alpha-synuclein proteins and tau oligomer aggregates - to be either implanted or delivered intravenously (or with microbubbles?) - while still others are experimenting with the use of 'inactivated viral vectors' as specialized delivery vehicles for gene transfer.

Then, of course, there is the plethora of global biotech firms hustling to be the first with the latest induced pluripotent stem cell (IPSC) breakthrough - Parkinson's turn is coming up.

In other words, don't roll over and kick your legs up yet...

17 Replies

  • Bravo my friend,well said, there is so much going on that a cure or better meds is not far away. You all need to recognise the things that you can do....... not what you can't.

    I see my body as say a car and I am the keeper. Parkinson's is like rust in a car. As,a keeper I have to do all I can to try and prevent that rust spreading quickly. Which means looking after it, if I did nothing and couldnt be bothered or gave up, then the rust would just take over. Nothing in life is easy but everything worthwhile is worth fighting for, so please please stop the negavity and if you can't say anything positive then maybe you should keep those thoughts to yourself.

    I embrace each day and think myself lucky x there are so many many people out there that have a lot worse things to deal with. One thing for sure we are all going to die at some point, and your a long time dead..... so live each day and enjoy the best you can. ...Hope you àll have good day ;-)

  • I agree with every word you said , life is for living no matter what fade throws at you. I still go to the pub at the weekend ,exercise and watch football. I am 64 soon to be 65 and I hope I will be doing the same I am 80. albert

  • Heheh... as long as we still have friends, football, and a cold beer all is good - cheers.

  • Love the rusting car analogy - everybody's 'car' is subject to a bit of rust sooner or later but that's hardly reason to park in a cold, dark garage somewhere (and thereby accelerate the rusting process). Since there are no trade-ins, the wisest thing we can do is keep them well-tuned and regularly revved.

  • This was my first reaction but on reflection I realised that the vital word "Untreated" had not been given due prominence. In the UK we used to have a radio programme in which two old dears exchanged their many and various woes culminating in the catchphrase delivered in a doleful voice "Its being so cheerful as keeps me going"

  • The key word here is "promising" - I have been reading about various ("numerous") treatments being "promising", ever since I was diagnosed some 13 years ago. My drug regime during that time has not altered very much, despite the "promises". It seems to me that the health issue of the day is cancer - it grabs all the headlines and most of the fundraising. We shouldn't expect it to be otherwise because it can be a surefire killer, unlike PD which is a gradual dousing of the fire. But the Cinderella status of PD ensures that the "numerous" and "promising" treatments rarely get the funding necessary to drive the research to a conclusion and the research concentrates on the broader scope of dementia with PD as an afterthought.

    When I was first diagnosed, a colleague who also had PD told me it was a good time to have it because there was so much work being done that a cure was imminent.

    So much for promises. I haven't keeled over with my legs in the air - life still has plenty to offer mentally, if not so much physically. But it isn't realistic to keep on about "promising" - just get on with your life and, if a cure comes along, it will be a very pleasant surprise.

    PS Paddy, I too am old enough to remember that catchphrase and it is being cheerful that keeps me going - you can't beat a sense of humour to make the world seem a better place.

  • At first when I was diagnosed and reading about PD and the "promising "meds I thought there might be a breakthrough in my lifetime but six years down the road I realize any breakthroughs are probably not going to happen any time soon. That's OK, it hasn't affected my attitude. The opposite of happy is sad and that's just no fun so I will stick with being happy. Oh yes, I'm 78.

  • MetaCognito, I wish I could be as optimistic as you about the many avenues of inquiry and experimentation but so far none have offered an "Ah Hah!" to the mystery of this disease or declines in aging. I am enjoying my last 8, 10, 15 years now as someone DX'd after 70.

  • I think it's a great caption, if true. I had no idea it might progress that fast to being bedridden. The 2006 reference making this claim only showed the abstract, not the specific 8 year comment. Wikipedia can be great, but it depends on the people maintaining the article, especially if it needs to be timely.

    GM1 and/or nilotinib may be cures that have already been discovered. GM1 has much stronger evidence, and it is publicly available. Once nilotinib becomes generic in a few years, it will be cheap enough for people to actually acquire. GM1 simply needs more production to bring the cost down. Both can be legally taken by U.S. patients "off label". They don't know about this because the manufacturers are not allowed to advertise its use for PD. Patients have to get word to their physicians in order to be treated, once they become less expensive. The problem with GM1 is that it can't be made less expensive unless it is being produced in bulk. There may be other cures already out there that are inexpensive but we don't know about them because it is not legal to advertise them as a cure. Only the expensive stuff gets headlines and serious research because that is the only way to pay for the headlines and research.

    Rasagiline inventor actually said they had to do multicenter-research not because it improved the science or FDA approval, but because it was the best way to get doctors on-board into understanding its existence and effectiveness. Getting doctors into the research means they have to be paid a LOT to do the research with their patients, more than their other opportunities. I say doctors, but it has to be an entire medical center (which includes administrators who make more than practicing doctors) like hospital/university programs. So in effect, "doctors" have to be paid if you want them to listen about new treatments.

    I would not be surprised if half of neurologists have not even heard of GM1, despite it stopping PD progression in patients for as long as they took it (2 years). It has to be made in animals, so pharmaceuticals would have to actually spend money in getting production up to speed (which is not typically the case with man-made chemicals). So the only one looking into producing it is a doctor and his family on a sheep farm. They're going to fail not because GM1 does not work, but because Parkinson's patients do not have the legal power of pharmaceuticals.

  • Interesting comments. I was intrigued by your statement -

    "There may be other cures already out there that are inexpensive but we don't know about them because it is not legal to advertise them as a cure."

    Why is it not legal? If any company develops a cure for any condition then surely they have the right to advertise it as such? the only reason I can think of would be where there is a doubt about the claim being true. Otherwise, you are talking about a worldwide conspiracy by nations health departments to deny the patients their drugs because they can't afford them.

    Seems unlikely?

  • The FDA will not allow "snake oil" to be advertised as a cure for a disease. It's a great idea. However, in order to meet the FDA's burden of proof, it is a very expensive process to prove a treatment can help a disease. The same burden of proof is not required for any surgery because there is no way to give the surgery that many times, especially in multiple centers trying to use different techniques, or even have a placebo group. This is how the cardiology field gets away with literally selling snake oil and killing people who could have lived. Honest groups of cardiologists have even published the vast failure of heart surgeries that should have been putting in tubes instead (basically, if you are not in the wake of a recent heart attack, you should be skeptical of the need for open heart surgery over a stent, according to the medical field's own research). The oncology field commits the same crimes under the pretense of investigating new drugs (for the past 4 decades...with no improvements) that sell false hope. It's not distinguishable from snake oil. The details are usually arguable, but in many specific cases it is clear. You can't get doctors to testify against other doctors in most cases or they can get in deep systematic trouble with their peers, especially with the heads of medical boards that issue the licenses needed to testify. Researchers face the same problem: be careful what truths or opinions you tell or your funding dries up.

    My point in the comparison is that heart surgeries and chemotherapies that are known to be harmful and not provide any benefit are being prescribed, and yet people who sell very safe inexpensive compounds are not allowed to tell you (by FDA regulations and severe penalties) that they stop Parkinson's in the test tube, in animals, and prevent PD in epidemiological studies. Instead, supplements require the same level of proof as usually toxic and expensive pharmaceuticals. Even the majority of private and public funding go to the pharmaceuticals there is every reason to believe will not help (at least in cancer) as opposed to the safe and cheap supplements that already have supporting evidence. Where's the logic in this if it is not because of some sort of accidental or intentional conspiracy in our economics?

    Then there is advertising: GM1 phase 3 trials were complete over 5 years ago. But almost no one here has heard about GM1. See

    It reverted and stopped the disease from progressing, which is not being said of nilotinib. It was 77 patients instead of 12. The data is published. Nilotinib study is not. It was a phase 3 trial. Nilotinib is only a phase 1 trial that is supposed to be only looking at safety. I wonder if a lot of professionals are aghast that they are saying these things through the media before publishing, especially since it was supposed to look only at safety. On the other hand only 12 people and the researchers doing such an outlandish thing like going public could mean it really is that good. I just hope it is not cold fusion all over again, if you remember that fiasco where they went public without the science to back it up. Getting back tot he point of advertising: I came across GM1 accidentally because I was looking for the trial on nilotinib.

    Two years after treatment stopped, they had progressed to where "standard care" patients had been 2 years earlier. In other words, the benefits seemed to permanently reverse the condition by 2 years even after treatment was stopped. That's my reading of figure 2 in the link above.

    It's not a conspiracy theory, but I think it's just how economics works. We all seek profit. Doctors, politicians, pharmaceuticals, and researchers should not be expected to act any different than we do. I assume everyone acts about like mechanics, plumbers, painters, and AC repairmen. My experience with them does not usually fall under the heading of "honest" and "fair". If the consumer is not knowledgeable, then he should expect to be taken to the cleaners.

    I do not know of something better than GM1, but that does not mean there are not 5 other compounds out there with similar proof. It's just one I accidentally saw. Gallic acid might be just as good and it's super cheap, but it probably hasn't been tested in people, except for the benefits noted from black tea and grape seed.

  • Zawy

    You may find this interesting. A research update from UK.

  • My point is that the FDA and the UK equivalent MHRA are concerned with safety. The disaster of Thalidomide is always in mind and there needs to be a considerable period of "wait and see" after trials to make sure that the long term safety of a new drug can be guaranteed.

    I can't comment on GM1 and nilotiniby since I have never heard of them but I don't hold the same view as yourself of the avarice of health professionals. Maybe that is because I am in the UK where the private sector is much smaller. My personal experience of the NHS is highly satisfactory

  • I am smiling as I write this brief response as I obviously hadn't read the post properly first time:

    "don't roll over and kick your legs up yet..."

    brought to mind the visual image of Reggie Perrin's mother-in-law (for non-Brits a hippo) superimposed with my face.......doing just that. I shared this with my physio & we collapsed in hysterics.


  • Hah! That sounds like an image that would be worth posting (anxiously awaiting :)

  • One of the worst statements I have ever heard about PD was at Northwestern University. The speaker stated that hope was nothing but delayed devastation. If that's the case we should all just kill ourselves. I have PD and my wife has Alzheimers. I told her yesterday what her prognosis was. After a good cry and telling me how scared she was she settled down. We talked about how we had to help each other and how we needed to stay as healthyy as we could so if a new treatment became available we would be here for it. She came out of the bedroom this morning with a big smile on her face and went out for breakfst with her twin sister. She has had two bouts with breast cancer and both ankles broken. Never complained.

    She has replaced all my war, sports and business hero's. It is amazing how a soft eyed sweet voiced cute woman turns out to be a better man than I am. God I love that woman.

  • Sounds like your brave wife has an equally solid guy balancing out the equation. "Delayed devastation" [sigh]? The last thing you need to listen to at a PD/AD conference is some self-important nihilist preaching his ominous definition of 'life'.

    There are currently several capable institutions working on alpha-synuclein/tau protein-busting antibodies and therapies that will eventually tackle the worst of our problems while others are working on ever more promising dopaminergic neuron reviving therapies. I'm not a NWU professor but I'm sure that with a little practical planning for 'the worst' you and your dear wife will be able navigate your way to 'the best' when it finally arrives (and it will arrive). Have a fabulous 2016!!!

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