Why are we waiting?


#1
What is keeping this cure lark?

They must have this sussed by now.

Correct me if i'm wrong

they can grow dopamine neurons from skin
they developed some nano technology thing to grow a purer crop of dopamine neurons
they know the best method of how to graft them (in solution apparently)
they know how to deliver gdnf by a modified virus
they know from the last grafting trial the need to have a balance between dopamine cells and seratonin and if its out of balance they have drugs to correct it.

So why isn't someone wrapping all this together and getting a shift-on. Whats missing?

#2
Have you read far away cows?

Brilliant book, fantastic read but don't go near it if you'll get upset by a very honest/no holds barred view of the financial losses involved if a cure was found.

I loved it but it was a reality check

#3
it seems obvious to me that there are many drug companies with a vested interest in keeping a cure under wraps because of the huge amount of profits made from the drugs they sell, many of which destroy life as we know it.
The cure for 90% of stomack ulcers ( cheap antibiotics for 10 days) was covered up by drug companies and gastroenterologist for more than 10 years so that they could continue selling massive amounts of antacid drugs.
If the PDUK receives funding from the drug companies how hard will they try to help find a cure and put themselves out of business?
I hate to be such a sceptic but events have forced me to see life very differently from how I viewed it in the past.

#4
Parkinson's UK receives about 0.5% of its budget from drug companies. This is not related to research but contributes towards the cost of some of our educational materials to help raise awareness of Parkinson's among healthcare professionals.

We work in an open and transparent way with industry to protect the impartiality of the charity. Our industry supporters don’t have any editorial input into the content of our publications or influence over our activities.

Ultimately, our aim is to find a cure for Parkinson's - an elimination of the symptoms of the condition. However, we realise that there won't be one single cure for everybody. Our research strategy outlines how we aim to move closer to developing a cure http://www.parkinsons.org.uk/advice/publications/research/research_strategy_2010-2014.aspx A key part of this is to develop systems which will allow us to screen potential new drugs that will move us closer to curing Parkinson's.

Unfortunately, drug companies are spending less money on the development of new drugs. This is not unique to Parkinson's but applies to a large number of conditions. A recent report highlighted the gap between basic research and drug companies actually developing clinical trials - this is referred to as the "Valley of Death". http://www.fastercures.org/index.cfm/Publications/Translational_Research:_Crossing_Over_the_Valley_of_Death

While we and other research funders continually try to persuade industry to get involved in the development of new drugs at an early stage, it's an uphill battle. So Parkinson's UK is working hard to see how we can overcome these difficulties. By developing pre-clinical models to allow screening large numbers of chemical compounds, we will hopefully come up with a shortlist that can be taken further and ultimately into the clinic.

But we realise that we can't do this alone. So we are also working with other funders such as the Medical Research Council to work out how best to bring these compounds closer to early clinical trials. Other charities such as the Michael J Fox Foundation are adopting a similar approach.

The advantage of this is that if we do find a potential drug cure, we won't hide it but we'll work hard to make sure that it is fully tested in the clinic in the hope that its development will be successful.

We hope this answers some of the concerns raised on this thread.

Kieran

#5
Thank you for your explanation. I hope that you and PDUK continue to push for all of us. It is good to see some clear, forward thinking, sensible possibilities for the future.

Best wishes

Chris

#6
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#7
Thank you PDUK for making it clear that drug company funding is small and does not affect the decisions you makere research.
But I still need ressurance that the ongoing and growing problem of DAs and related OCDs is being dealt with by directly challenging the drug companies involved about their inaccurate and inadequate warnings and denial of liability for the damage done by their product.

#8
It seems to me we are looking for a drug rather than looking at popping the hood and having a little tinkre.

It's like breaking your arm and taking asprin to sort it out rather fixing the thing with a plate and some pins.

I'm going to find out how much each stage of the Eckie method outlined in my first post.

#9
Stem cell implants may work - but stopping implanted cells becoming damaged in the same way is another matter. Finding the damaged areas of/imbalance in, the nerve tissue around the whole body, that are the root causes to the damage in the brain in the first place; for each individual case, will be the key!

MRI scans (remembering one half of the body is usually effected first, so ineffective areas, comparisons within the body should be relatively easy to spot.) followed by Physiotherapy and appropriate targeted drug treatment, exercise and healthy diets, should be the first steps in my opinion.

Physiotherapy has certainly made a great difference to enabling easier and increased mobility in my case (plus a reduction in the dosage of medication, which to me indicates a step in the right direction).

#10
Well I had a thought aboiut that.

I had 35 years playing football, guitar, golf, sun, sea and sangria.

So it took 35 year.\ I would take another 35 years in the sure and certain knowledge that the medical fraternity comes up with the profitable drug that will cure us and eradicate this unholy affliction.

It would be favourable for the drug companies to do this. They would be keeping PwP on ice until they have developed their drug. Otherwise we are going to have our future fetuses scanned and anyone with the dodgy gene will be got rid of. So they are keeping there demographic. Its money in the bank.

#11
I have been disappointed with physiotherapy. I've been in with numerous problems e.g. knee, shoulder, fallimg, etc. and each time I leave with an elastic band and an A4 sheet of paper with matchstick men having matchstick men sex.

If I could get into any of the positions shown I would have no need to go to physio.

Besides you need to wait 10 weeks before you get to see a physio, by which time the problem has resolved itself or you have removed the offending appendage yourself in a DIY-ectomy.

#12
Good thinking, Eck. Where would we be without you?

:grin:

#13
ECK,
YU LIKE ME AND ALL PARKIES WANT A CURE,,
CONTRACTING PARKINSONS WONT KILL YOU, BUT LIVING WITH , IT DOES
EVERYMAN AND HIS DOG, IS RESEARCHING PARKINSONS ,
THE FUNDING ,S NOT USED TO FIND A CURE, ITS TO PAY RESEARCH
UNLESS YOU HAVE PARKINSONS YOU DONT APPRECIATE, HOW DESPERATE WE ARE
NO DOUBLE TIME , EXTRA HOURS,N O INCENTIVE TO GET A RESULT, NO CORRELATION
RESEARCH HAS NO TIME CLOCK, FUNDING KEEPS ON ROLLIN IN
GRANTS MONEY CASH, NO ONES UNDERPAID OR FIRED FOR NOT GETTING A RESULT
THAT SAID
SMART CLEVER, AS THESE GUYS ARE THEY DONT REALISE OUR FRUSTRATION
BUT ANNOUNCEMENTS RAT OR MONKEY WE DONT CARE ABOUT , YET THEY STILL GET PRESS
OUR NIGHTMARE ON PARKIES STREET, WE ARE HEADING FOR ZOMBYVILLE, AND STILL MR RATTY,IS TO THE FORE
A CURE/ MUST BE POSSIBLE,SURELY SOMETIME, LIKE THIS YEAR, AND FROM CELL TECHNOLOGY.TRIALS ON HUMANS, LETS BURY THIS GUY PARKINSON
FOOTNOTE
I WROTE A SONG FOR RAISING FUNDS FOR A CURE .IF
A CELEBRITY RECORDED, IT WOULD RAISE PUBLIC AWARENESS .
A HAND FROM ANT AND DEK WOULD BE GREAT
AND PERHAPS SOMEONE KNOWS SIMON COWELL, TO ASSIST WITH RECORDING
SONGS CALLED,,, ONE DAY YOUR NOT.
HAS A REAL GOOD LYRIC LINE..ITS A NUMBER ONE
PLEASE EVERYONE LETS GET MY SONG RECORDED, SUCH THAT
ONE DAY WE WILL......PARKIES NO MORE
PROFESSOR

#14
You might just be in time to submit your song for the Mervyn Peak awards.

It might not reach number one but it will be printed on a tea towel which will be available to purchase in Mervyn's gift shop and web site store.

If you need someone to play a staccato on guitar, or maracas, castanets (I'm sure your getting the idea now) or require dull monotone vibrato baritone, I'm your bus.

I'll just go and look out my mike, get the plectrums out the hole in my guitar and iron my spandex ... where did I put my mod parka and vespa ...

#15
sound s like a good idea a parkies band what shall we call it Shaky Stevens s ? Anyone with ideas?

#16
I believe PDUK and ALL of the researchers are trying to their best abilty to get something sorted....but I feel it is too late for us. We will die without a cure having been found. PD won't kill us, but I don't expect anything from the researchers soon.

Maybe more symptomatic based drugs, maybe not.

Feel like crap today

#17
I tend to agree with spam. If 'cure' means getting back to normal with a full set of neurons pumping out dopamine, then don't hold your breath. On the other hand, I think there is a very good chance of treatments to slow or stop the progress of the disease. At the same time there will be improvements in the treatment of symptoms and side-effects. How that fits in to each of our timelines is the moot point.
I am sure that all researchers are doing what they can as fast as they can but it is an extremely complicated field. I think we shouldn't overlook the almost miraculous DBS - sticking electrodes in brains to control diseases is an awesome achievement. The effects on some recipients is quite extraordinary.

In fact i think that's good name for a band DEEP BRAIN STIMULATION. Could specialise in pretentious 70s rock.

#18
The last time I held my breathe I was held upside down by the ankle and given a whack across my bare backside.

Yep, I won't be trying that tactic with Mrs Eck next time I want a comic and a sweetie. Right in the middle of Tesco.

Everything we need is there, we just need someone to do it.

Melon baller - check
Stem cells - check
Super glue - check

Throw in a toilet roll tube and some sticky back plastic and you could make yourself a get well soon card.

In fact I'm going to make a DIY kit and sell it. Pat. Pending. ©MMXII

#19
make sure everything is sterile.
you wont need anaesthetic once you've drilled the hole. (wouldnt advise using a black and decker as breaking through the skull can happen quite suddenly and so be very messy). you will also need a mirror (one of those shaving mirrors should do) and something to hold back the frontal lobe from the temporal lobe once you have cut down the lateral fissure. a shoe horn might do but it will be slippy.
Now look for the tail of the caudate nucleus - that should be easy to find as it is bright purple and has an arrow pointing at it according to my book. Just underneath that is the substantia nigra which is black. give it a good squirt and sew everything back up. if you have trouble putting on your shoes in the morning, you may have left the shoe horn in. if not give it a good rinse before using it again. try keep your head as still as possible so the stem cells dont move about while attaching themselves to the right neural pathway.

#20
Turnip,

After reading all the serious stuff at the beginning I was getting more and more depressed although Eck did throw in some wonderful comments. The shame is that by the time I got to yours I was in tears. Absolute tears of laughter. Sheer genius, there is obviously very little wrong with your brain.

Give up writing on the Forum and apply yourself to a PD Comedy series. It will rival Only Fools and Horses.

You made my day!:laughing: