I am not writing this in anger and it’s not loaded in emotion. As I lie here thinking about it, I just wonder what the answer is.
My mum was diagnosed with Parkinsons over 19 years ago. In all that time, we were told that a cure or intervention wasn’t far away. My mum clung onto that hope. As did we.
It hasn’t happened in those years. I simply question what would need to be true for it to happen?
This post from ScienceOfParkinsons January 2018 is very encouraging, and give insight into the rate of change on Parkinson’s research -
2017 – Year in Review: A good vintage – The Science of Parkinson’s (scienceofparkinsons.com)
I think research follows the money, big pharmacist dominate. Have a look in you tube for red light therapy for pd, photo bio modulation, which seems amazing, energised the brain cells and can improve pd, tbi, dementia there is a Australian gp who makes them at no profit and has had great success.
Her video is both entertaining and informative ,
I think they cost about 550 pounds.
I’m so sorry you are going through this worrying and frustrating experience. I can imagine how tough this journey has been for both you and your mum.
We’re pushing to deliver a new treatment for Parkinson’s by the end of 2024. And we’re determined to develop a cure in the shortest possible time.
We’ve already made vital discoveries that have revolutionised our understanding of Parkinson’s and the brain.
Thanks to the progress we’ve already made, new treatments are being tested in clinical trials that have the potential to slow, stop or even reverse Parkinson’s.
stem cell therapies, which aim to use healthy, living cells to replace or repair the damage in the brains of people with Parkinson’s
gene therapies, which use the power of genetics to reprogramme cells and change their behaviour to help them stay healthy and work better for longer
growth factors (like GDNF), which are naturally occurring molecules that support the growth, development and survival of brain cells.
And we’re developing treatments that aim to improve life with the condition, including new drugs that can reduce dyskinesia.
For more information on the work we’re doing to find a cure, please visit our website here.
Your question is completely valid and as I said, I’m sure this journey hasn’t been easy for you, but please be rest assured that we are here to support you and your mum in any way we can.
@HavanaS, you’re right, for the last few decades, scientists have repeatedly said a ‘disease-modifying’ treatment is 5-10 years away.
There is a lot of research going on but the reality is that PD has proven to be more complicated than anyone thought, with multiple underlying mechanisms that are still not understood.
We will find a cure eventually, but when is a tough question. I don’t expect to be cured in my lifetime but I expect the next generation to have to worry less about PD.
To answer your question directly, something like a 10x increase in research funding would certainly help.
The following blog post might be of interest:
Snap! I was diagnosed 18 years ago and I was told then that they were close to a cure and here I am 18 years on and we are still close to a cure.
I have no doubt there are a lot of people working hard towards a cure but that’s not helping me today.
One of the promising areas of research is stem cell therapy - this has a long and complicated history but has been proven to work in some (but not all) cases. The video here (Parkinson's Disease :-Prof Roger Barker "Can we repair the brain in PD using cell based therapies" - YouTube) released this week gives the latest update and explains some of the challenges. I would say there is a good chance that this will become a widely available therapy in - you’ve guessed it - the next 5 to 10 years…
This is a really interesting thread; thank you so much for all the really useful information that people have posted here. Having lived with this since I was 48 (now 57) I do not expect there to be much movement in terms of treatments, and definitely no cure, in my lifetime and even if there are, I question whether I will be eligible to access them anyway. With constant moves to change the way the NHS works in order to reduce costs, I’m curious to know how things work. So much research is being paid for through charitable donations but surely it will need one of the big Pharma companies to be involved if ever anything does get into the production stage. This being the case, is there any safety net in place in terms of the price said Pharma company can put on such drugs and what about the NHS willingness to provide them?
I have a passing interest in research and I do have hope for future generations but in
the meantime, I have to live with Parkinson’s now and anything that could make this a bit easier would be very welcome.