Eek, the pressure!!
When I first started writing this blog back in October 2012, it was oh so easy to find things to say. My friends and colleagues, on the whole, knew as little about Parkinson’s as I did and seemed interested in walking the journey with me. The hardest thing about starting the blog proved to be taking the actual Jellywoman photo: my lovely colleague Amy and I struggled for ages with tubs of Hartley’s finest strawberry flavour and various playdough accessories. It turns out that jellies are not as stable as one might think and the resulting grizzly mess of plastic limbs and collapsed gelatine suggested a particularly obscure episode of Endeavour.
So I wrote about diagnosis and drugs, symptoms and research. Then, gradually (everything in Parkinson’s happens gradually), the scope of the blog expanded to include teaching and travelling and general life in the heady streets of North London.
When the blog started, I was weighed down at weekends by planning and marking and assessments. I had absolutely no time to spare. Hence I was able to turn out a blog a week as there’s nothing like avoiding one job to get another done. Nowadays, I have a lot more freedom as to what I do and when. So, of course, the blog, like jam, gets put off until tomorrow and sometimes tomorrow turns into next week. Mostly my weekly blog now appears monthly – (I’m supposed to be working on a book in between) – and I was rather anticipating that the 300th edition might slip past without a fuss, just being read by ActorLaddie and my mum.
And I would have gotten away with it too if it hadn’t been for that pesky Ambroxol trial which lead to the last blog turning out to be my most read ever. More read – if you can believe this – than the gritty piece of blog vérité about the local scallywag who threw eggs at our windows.
In truth, I’ve been a bit overawed – and also relieved – by the reaction to my last blog. Thanks so much if you’ve been in touch or commented or retweeted. It really is very much appreciated.
What’s more, there is some brilliant news! There has been an announcement that the Cure Parkinson’s Trust and the Van Andel Institute (in America) have agreed to fund the next stage of the Ambroxol trial! Which actually means that if you donate to the CPT – and I know many of you do – then you’re funding the trial. For which, much thanks – you are (in the words of my nephew when he cooked his first jacket potato) awesome.
The next big challenge to the team behind this project will be to recruit enough people with the appropriate sort of Parkinson’s to make the trial viable and the results valid. As you’ll know by now, there is a considerable variation in this condition. Simon Stott (Deputy Director of Research at the CPT) summed it up clearly, I thought, in an recent blog when he said:
It is gradually being agreed that rather than being a single ‘disease’, Parkinson’s may actually be a ‘syndrome’ – that is, a collection of conditions that share similar symptoms.
In the same way that researchers can’t judge the efficacy of a prostate cancer drug by testing it on breast cancer; the participants in this – or, I guess, in any – trial need to have the sort of Parkinson’s that might reasonably be helped by the drug.
So there’s been a request by the team for anyone who thinking of volunteering in a Parkinson’s trial to #GetTrialReady by finding out if they have a couple of the genetic risk factors for Parkinson’s. This is done by a simple saliva sample; a kit is sent to your home with a prepaid envelope to return the sample. The PD Frontline site explains this much clearer than I can, or have a look at the Twitter feed for @ParkinsonsDoc.
Exciting times. Think it bears repeating – eek!
Have a good week. I’m looking forward to really getting going with Parkinson’s Warrior training this week: will feed back anon.