“I’m a glass half-full person… I spill the rest.”
We laughed. A lot. “It’s an old joke,” said Tom Isaacs, a little apologetically. Well yes, it probably is. But given a whole new life from being told by someone with severe dyskinesia who is wrestling with their glass of water. A joke repurposed, in fact, and all the funnier for it.
‘Repurposing’ was a big theme at last week’s fascinating Cure Parkinson’s Trust Research Update Meeting, though largely in the context of drugs, rather than jokes.
The quest to find a completely new compound which can delay, halt or reverse the progression of Parkinson’s was described by Dr Jon Stamford as akin to “looking for a needle in a haystack when blindfolded and wearing boxing gloves.” The chances of hitting upon a drug that works, and then steering it through all the necessary trials, made me wonder how anyone ever found a cure for anything.
Hence many of the current research projects are investigating drugs which are currently being used for other conditions – so have passed safety tests and are already in production – to see whether they can be ‘repurposed’ for use with PD. As a non-scientist, it seems to me unlikely that a drug being used for one thing could also treat another. However, there are optimistic results coming from research into a number of such drugs, so what do I know? Dr Stamford said he expects there to be significant progress made in his life-time and, what’s more, in time for him to benefit from it. As the chap is a respected neuroscientist who has also himself developed the condition (anyone who’s anyone, darling), I choose to believe him.
There was a great deal of discussion at the meeting about the difficulty in recruiting people to take part in trials. I was shocked to hear that 21% of prospective clinical trials failed to recruit a single volunteer! We tried to unpick some of the reasons for this; these are the ones that lodged in my head at the time or have occurred since:
- there is no one place where researchers can advertise their need for volunteers, or volunteers can offer themselves as willing participants. In the US, a Person With Parkinson’s can register on the Fox Trial Finder, (nothing to do with hunting; the Fox in question is Michael J), and then the trial can find you. There is no similar UK-wide scheme.
- both the Cure Parkinson’s Trust and Parkinson’s UK have sections on their websites where they highlight trials which are looking for participants. However, this relies on the PwP actively going onto the websites to look. Now, when I was diagnosed, I avoided looking at these websites for many months in case I stumbled across something which implied that PD was not going to be a barrel of laughs. I still browse from behind the sofa and, presumably, some other PwPs feel the same.
- we know that most people diagnosed with PD are elderly and we know that not all elderly people are comfortable using the Internet. They may be very willing to help but not be aware of how to do so.
- many PwPs have mobility problems and may worry about the practicalities of being involved in trials. They may not realise that researchers often offer taxis or arrange hotel accommodation if needs be.
- the requirements for some trials restrict the number of people who may be eligible to take part. For example, there is shortly to be a trail of ‘Simvastatin’ which has shown some positive effects when used with people who have MS and may be of help with PD. But people who are currently using statins, or who are discovered in the screening process to potentially need statins, are ineligible for the trial; that discounts quite a lot of older folk.
- anecdotes about bad experiences on trials spread faster and wider than stories of good experiences. Someone who is just coping with the condition may be very wary of anything that might tip them into not coping. Some people who run trials may not be sufficiently sensitive to what they are asking of volunteers.
Claire from Parkinson’s UK spoke about a forthcoming initiative whereby people who have been involved in projects could act as ‘Research Ambassadors’, sharing their positive experiences to encourage others. Mind you, this relies on experiences being good. Personally, my involvement in research projects – four so far and another two in the offing – has been extremely positive. I’ve met with some inspiring, knowledgeable people and have gained a great deal from feeling that I’m part of the solution, not just part of the problem.
But Tom spoke about attending a meeting when someone asked how they could support with research into finding a cure. “Well,” came the first reply, “you could sign up to donate your brain.”
That would be taking volunteering to an entirely different level. If it’s all the same to you, I’ll hold onto mine for a bit longer.
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Thanks for this. I knew they were having trouble getting volunteers, but I didn’t think it was this bad.
Neither did I. I gather they’re relying a fair bit on word of mouth.