What happened


#1

When my wife was diagnosed three years ago the neurologist joked "that there was never a better time to get the disease" and there were loads of upbeat stories about a breakthrough within the next 5 years in stalling the progress of the disease and maybe even curing it.

Since then nothing, a deafening silence and her neurologist told her the other day that all that upbeat optimism was unfounded and that no such breakthrough is on the horizon.

All very depressing. What have others heard? Is there any genuine hope for a breakthrough or not. Perhaps our DIrector can comment.


#2

worrying that no one can come up with instances where a breakthrough might be possible. Very depressing

 


#3

I agree Dave, hugely depressing.     I think it was very irresponsible and thoughtless of your wife's diagnosing neurologist to say what he/she did, as even if there are breakthroughs in treatment, they take years to finesse.

When my husband was diagnosed five years ago, there was great hope and optimism amongst people I spoke to about new treatments, etc., but unfortunately nothing seems to have come to fruition.   They are now saying the same thing, i.e. "...in a few years time...."     Sadly, we don't have years and years to wait.


#4

I can remember being told exactly the same thing 11 years ago at my first appointment with the Neurologist who confirmed my PD.


#5

Hi everyone, thanks for your posts. I've spoken to Arthur Roach, who is our new research director and he's asked me to pass on the following message:

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"Hello – I am Arthur Roach, the new Director of Research and Development at Parkinson’s UK. This is my first post on this forum. I am very sorry to hear how disappointing the search for a cure is to you, and I know to many others as well. I do not see the kind of breakthrough you are talking about coming very soon unfortunately, but rather a steady improvement in the way we can use existing drugs to manage the condition. I could write pages more but I will limit myself to the overview here.  

The progress that the field is making at this time is truly exciting and this is leading to the exploration of many new approaches to treatment, but as you have heard many times it takes many years (often ten or more) to turn a scientific discovery into a new treatment. What you perhaps do not see is that there are thousands of scientists working with the support of hundreds of millions of pounds every year, from dozens of agencies and organisations including Parkinson's UK, to turn these discoveries into treatments. Even though the great majority of discoveries will not in the end become treatments, we unfortunately cannot predict the winners without a great deal of work. I know that in this area more than any, it is in the end results that count, not efforts. But we do need to make those efforts and many people are working hard, and many people are providing a lot of funding, to make that happen. The very effective treatments that we have today, starting with levodopa/L-Dopa, were themselves the result of years of work (with many blind alleys along the way).

Today we are testing the growth factor GDNF in a trial that itself is built on things learned in earlier studies. This has the potential to change the disease course, and we are all eager to see the trial succeed. It is not easy to administer and may not be suitable for everyone, but this is what we will learn from this and future trials. We are looking into how to save years by finding out if some older drugs already in use could be effective in Parkinson's, and there is a new idea that it could be possible to stop the disease process early with an antibody working before the brain is affected. 

Today Parkinson's has some of the most effective symptomatic treatments of any neurodegenerative disease. We know these are not enough and great efforts are being made to bring new and powerful treatments. We all wish the success were earlier, but I truly do believe it will come. 

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I hope Arthur's comments are helpful. Just to note - we'd be very happy to pick this discussion up again in the New Year and don't forget that you can email research@parkinsons.org.uk if you'd like to raise anything directly with our Research team.

Some potentially useful links relating to Arthur's message above:

Best wishes

Sharon
Forum team


#6

Thanks for the update Sharon and Arthur.

what is really distressing is that many of us have been mislead by the medical community into believing something was on the horizon. Parkinson UK are not immune from this criticism as the previous director was himself guilty in giving people false hope of an early breakthrough. 

I'd far rather hear the truth rather than the medical profession giving people false hope and raising expectations and then dashing people's dreams and hopes.

Arthur's article is at least more balanced 


#7

Elsewhere on the web site Arthur talks of us being " on the cusp of slowing or stopping the disease." Realistically what does "on the cusp" actually mean in terms of years


#8

Please, please let us know if you've read the GDNF Trial link.  Yes it involves brain surgery.  I put myself forward for this as it truely is an opportunity to do something to find answers and for me beats waiting feeling I have no way to help me and other PWPs.  The GDNF trial needs more suitable candidates.


#9

Hi everyone, thanks for your comments.

davech I've passed on your comments and questions to Arthur, and here's his response.

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"You will not be surprised to hear that the phrase "on the cusp" was used because I know it is not possible give any precise timing.  However here are some facts for one case (you can decide for yourself at which point you would say that we can "slow the disease"): 

Our GDNF study is expected to provide a strong indication of the usefulness of that approach by early 2016.  If everything looks good, a larger trial would be expected to begin later that year, and there would be opportunities to enrol in that study (with a chance of being in the placebo arm). 

Without a definite plan available today, I can only estimate that this study would be completed in about two years, and approval might be expected 1-2 years after that.  There are many things that could slow or stop any programme, including this one, but I believe these are reasonable assumptions if all goes well."

==

The Parkinson's UK office is closing for Christmas this afternoon, and we'd be very happy to pick this discussion up again in the New Year if there are any more questions. As Sharon said before, don't forget that you can email research@parkinsons.org.uk if you'd like to raise anything directly with our Research team and they will get back to you in the New Year.

Best wishes
Sophie
Forum team