There has been some, how might one put it politely, umbrage taken over a Parkinson’s UK (they of the graveyard helpline) video entitled ‘Will there be a cure for Parkinson’s in my lifetime?’
I don’t want to get too maudlin or shouty (and as the ever-wise Jon Stamford points out, ‘There are few issues in Parkinson’s more emotive than the question of a cure.’) but I would like to poke at this video a little and expose its strings. I’m not going to do my usual, just lay it on the line. And it won’t be pretty.
The title is bollocks. The question asked was ‘what chance does my uncle, who is 78, have of seeing an effective treatment for Parkinson’s in his lifetime?’ Only completely different. Do the good people of Parkinson’s UK actually ‘do’ listening? But hark, the answer:
Progress is very slow on the ground in real time, but over the longer term progress is very real
Pardon? Do you mean ‘no?’
The answer continues with the statement that two drugs have been approved for PD in the past two years, safinamide and pimavanserin, and ‘the field is still working out how to use those, but they will find their place and they will be helpful.’
Helpful. Thank you. Safinamide is a monoamine oxidase‑B (MAO‑B) inhibitor used as an add-on therapy, while pimavanserin is an anti-psychotic aimed at reducing hallucinations. So fuck all to do with a cure, and not much in the way of effective treatment, neither. Why not just say no?
It was the ball-breaking cheek and disingenuous bullshit of the next statement that got me all shaky, however. And it was concerning alpha-synuclean drugs that were now in phase two trials, which meant that, get this,
Significant number of people with parkinson’s are going to have access to them through clinical trials, they may benefit them in those trials
Yes, masser (tugs forelock). Damn, parkies, you might get lucky on a trial. Gee. Thanks. You’re all heart. Is this guy for real? I mean truly, really for real?
We wish there was more.
Some honesty at last.
Then this bullshit comes out:
The real crime would be if we’re sat here twenty years from now answering the same question and being no further forward.
Sorry, but that’s utter crap. The real crime would be if you still don’t have the balls to tell the truth, because you’re pretty sure none of the audience will be here in twenty years to call you out.
But get this, ungrateful shaky and multiple non-motor symptom’d ones. It could be worse, we could have alzheimer’s or huntingdons. Really? That’s your caveat? Can I legitimately call you a cunt? An ignorant, patronising cunt? We can’t cure decapitation either.
Oh, but it gets worse. ‘I would say someone in their seventies may have benefit from some of these trials.’ Well, I suppose you addressed the question, even if you refused like a pony at Beecher’s Brook.
The gold star, however, goes to the final line:
If we’re still answering questions like this in twenty years’ time then we’ve failed in our duty.
It’s meant to sound full of hope, and to show how much we care. Sadly, it just illustrates the utter, utter lack of anything approaching empathy. And I tell you this, video people. With this one line, you’ve failed. Utterly.