By my calculation this sub-forum, Research discussion, has had only 7 new topics (threads) started so far this year.
Clearly I should take some responsibility for this. If I had posted on everything that interested me, there would be many more new topics by now. But, I become disheartened when there are so few people posting in this area.
What reasons put others off?
John
Hi John,
Thanks for posting, you pose a really good question. It'd be great to hear what members are reading or what others think about current research.
If anyone would like to catch up with Parkinson's UK's research news they can read more about that here
Our current projects can be found here too.
Thanks
Kat
Hi,
I have to admit that this has always been a section of the forum that I only read on a very occasional basis (today as it happens) though I do read the research news on the website regularly. It's not that I don't support the search for improved treatments and a cure, I really do and I would love to think that a cure will be available for future generations, but I increasingly find that on a personal level, I am more concerned with issues related to daily living now - driving, work, mortgage, money, bills, relationships. . . than I am with the possibility of new/alternative treatments in years. I think dealing with things right now just takes up all my time and energy.
J
I agree. I am really interested, but it all feels a bit remote and it seems clear any sort of real breakthrough is a long way off.
F
You raise a very good point John and with the benefit of hindsight it's really disappointing to see so few new articles.
I think we're potentially moving into a dark and dangerous era. There's simply no money in research for the drug companies, so little chance of success, such regulatory barriers, such long lead times and such deep pockets required that many are only interested in picking up on projects much later than they historically would.
We desperately need more researchers in universities across the globe to hit upon promising therapeutics that the companies will then step in and run with them, but these researchers also need funding (less, as they are not driven by commercial success in the main) but funding which is increasingly scarce.
Scary - or potentially scary.
In the "driven by profit" world we live in, where it can (easily) cost £250M to fund clinical trials, is it any wonder that for a UK patient community of less than 150,000, many of whom are "older than average", there seems to have been so little progress?
Charity cannot afford to fund the gap, and for big Pharma, there are much better cost benefit cases out there. Our economical metrics simply don't stack up.
If the "system" is not working for us, let's change it so that it does work for us. There's roughly 130,000 people in the UK with Parkinson's, many of them have the skills needed to do research, run trials and develop therapies. I suspect that, if they were organised, we could get a thousand new researchers in the UK and, perhaps, 100,000 worldwide.
John
Hi Babesbrown,
I totally agree with your remarks.I do not have a tremor and people say but you do not have a tremor you can't have pd and others say well it's awful the tremors that p d people have they are much worse than you.
I was once told (not sure if this is correct)that the disease progresses faster if you don't have a tremor.
I live in Scotland and i have good support.We can contact our pd nurse at any time and it's not a neurologist i am under its a movement disorder specialist although most people in Scotland are under neurologists.
Roll on the day when a cure is found!! Anne
Hi Babesbrown,
I'm really sorry to hear that you are losing your nurse, that is extremely unfortunate. Please remember that you can talk to a Parkinson's nurse on our helpline for free, I know it cannot replace the valuable service you have now but we will help you in any way we can.
We can relate to what you've said about tremor, we know there are many symptoms and that people experience them differently, we recently released a video on freezing for example. We will continue to raise awareness of the complexities and different experiences of people with Parkinson's. Please get in touch with us if you need to talk.
Kat
i I have the expensive Ddopa and it has helped me a lot, but no research into refining this system to make it less bulky, Drewster is correct when money is needed very little is given parkies direction, 18billion for the big carriers no prob but pd no sir,, we need more of the inferior lightning 2 ( should be 3s) for the flat tops ??
FED
Well said Babesbrown.
Maybe PUK should be looking into things that improve daily life and living with the condition, rather than a cure, because I have heard all this for so many years I am almost at the point of cancelling my monthly direct debit to PUK because all the money that is sent from branches and individuals for research is getting us nowhere nearer a cure after decades.
With respect, PUK Admin on here always avoid the main issue and take up the side issue, with a referral to the helpline.
Well I agree with all comments here but the money needed for research is a major obstacle why are humans so stupid , spending trillions on killing machines when so many suffer I have left my brain to science though I only have 10 brain cells now at 66 so by the time Im 76 ill be left with 1 or 2, anyway we live brains to work out ways of defeating parky , also the odds of winning the lotto are 128000000 to 1,so imagine the scenario Im given a cheque for £124 000 000 which I will give £100 000 000 to Parkinsons research and the news comes through that a cure has been found as a result,, the shock stops my heart,,,good old sods law eh
FED
Oh Fed
The answer is simple!
Spending trillions on killing machines...massive profits for arms manufacturers.
No cure for Parkinsons....trillions spent on Parkinsons meds....massive profits for drug companies.
No wars...no profits.
Cure for Parkinsons.....no profits....and no huge CEO salary for head of PDUK.
Greed rules...
How I wish it wasn't so.
Love
GG
Nnng, I am a thicko at times, I never thought of it like that but you are absolutely correct so we are doomed then, should I go ahead with this painfull toth extraction tooth tooth extraction or let some nutter ( rhymes with bump) extract my life as he annoys the NKs Chinese and Russkie into a showdown, I would rather miss the dentistry , so its armageddon then,, decisions decisions, at least it wiill cure evryones parky.
Fatalistic FED
Hi everyone,
I'll feedback your thoughts and feelings on this matter to the relevant people in the organisation. If you'd like to discuss the matter of cancelling direct debits and your reasons with someone please let me know, I'll put you in touch.
It must be frustrating for some of you, I can see it. But I'm a moderator of these forums. I'm here to support you or answer your questions when I can. When I cannot and I feel you need to talk to either a Parkinson's nurse or an adviser, I'll remind you that this service is there. That is my job and I try to do it to the best of my ability. I understand that it is not always enough. We want what is best for the community.
Please let me know if you'd like to talk to someone about what's been raised here.
Kat
Hello Kat
Thank you for your kind concern , I know some of my posts are a bit ranty ,is that a worn ,,, at times silly at others and scared at some developements and then of course there silly which I like, I tend to be silly in the morning from 7 30 until 1 00 1 30 ish then I begin to slide back slowly at first and no noticible by others but inside my head a small war is underway and its no quarter given, I press the boost on Ddopa and that halts pd in its tracks (for a while) but after 1hr or so it starts again and by now im tired, and the fights gone out of me the only thing is distraction,, ie this toplap, or constructive arguments but eventually its bedtime, then a new war starts in my dreams which are so gutwrenchingly awful I cant even write abut them here prostate and viscous back pain and NPS round off the average day for me, as I said thankyou for your kindness in a average day for me I find kind is blind in m mind, ,,,,a little silly still there ??
Kind Regards FED AND GREAT NEW YEAR to you kind young person
