Movers and Shakers - the Big Sing

A great day out in Westminster and Huddersfield

When Gillian Lacey-Solymar told the Movers and Shakers team we were going to have a mass singalong to our anthem We Will Survive at Westminster we thought she was bonkers. Mind you, we thought much the same when she penned her Parkinson’s-appropriate version of Gloria Gaynor’s timeless hit and told us we were going to make a pop video.

We were wrong then and boy, were we wrong on Friday, World Parkinson’s Day. We had feared that after weeks of planning only a few dozen people might show up. But when we arrived at the statue of George V opposite the House of Commons entrance it was surrounded by hundreds of people, all enthusiastic and eager to take part in an event highlighting our campaign for better Parkinson’s care.

We had come from Downing Street where along with representatives from the Parkinson’s charities we handed in our petition calling for the Parky Charter to be implemented to a nice policeman at Number 10. (Of course, this “handover” was symbolic - the petition is still very much alive and will be until September. So please contnue to sign and get everyone you meet to sign!)

It soon became clear that people had come from far and wide, with quite a few travelling to London the day before to be ready for the Big Sing. There were old friends of the podcast, like Matt Eagles, diagnosed with Parkinson’s at the age of eight, and Gaynor Edwards, founder of the young onset charity Spotlight YOPD. But I bumped into people who had travelled from Somerset, the West Midlands, Wales and Scotland to have their voices heard.

What none of them knew was how the great singalong was going to work - and we movers and shakers were not so sure either. We had tried to have a We Will Survive singalong at our Middle Temple Live event in January and it had been a bit of a shambles - it turns out that it is hard to keep in time with other members of an impromptu choir when you are singing rather complex lyrics.

But it turns out that what you need is a Nicola Wydenbach. Nicola is a classically trained musical director who has been working with people with Parkinson’s for more than a decade. She warmed us up by getting us to practice on a few songs, from “It’s a Wonderful World” to “Yellow Submarine.” We immediately saw that it was going to be great fun and that,, however bad our individual voices (I’m looking at you, Cellan-Jones) , the end result could still be pleasingly tuneful.

Then we plunged into We Will Survive, first a rehearsal then the real thing. And it was wonderful, a joyful emotional experience on the warmest sunniest day of the year so far.

Meanwhile, Mark Mardell was in Huddersfield for a Yorkshire Big Sing event which attracted 160 people from seven choirs. Many were waving flags and their warm up included Do You Hear The People Sing? from Les Miserables. But, says Mark,”the atmosphere wasn't really revolutionary, but happy - happy to sing, happy to see old friends and make new ones.”

So what did we achieve with our World Parkinson’s Day event? While a couple of MPs did turn up at the Huddersfield and Westminster events, a cynic might argue that most of them, home for the Easter recess, won’t even have noticed the Big Sing. They won’t have heard of the Parky Charter either, and that means ministers are unlikely to be pestered about the need for better Parkinson’s care.

But in any campaign, two things are important - morale and momentum. Spending a couple of hours talking - and singing - with so many lovely members of the Parkinson’s community certainly raised my morale and I suspect I am not alone.

As for momentum, our parliamentary petition is proving a useful way of keeping our issues in the spotlight. When we saw the government’s response to the petition - something that has to be provided once it has 10,000 signatures - we felt it was rather vague and lacking in detail. It seems the MPs on the Petitions Committee agreed, saying it “did not respond directly to the request of the petition” and they asked ministers to provide a revised response.

In more good news Scottish Labour MP Graeme Downie has secured a 90 minute debate on Parkinson’s in the House of Commons, some time in early May - another opportunity to keep the momentum behind the Parky Charter going.

There is nevertheless plenty to be depressed about if you are living with Parkinson’s, from failed drug trials to what Gaynor Edwards told us is her big worry, the damage Donald Trump is doing to global research for a cure by sacking thousands of scientists.

But two inspirational Parkies at the Big Sing gave us reasons to be cheerful. Matt Eagles always seems to have a smile on his face, despite battling Parkinson’s for fifty years: “We've got to be resilient, and we've got to be keep up the pressure,” he tells us

And Anthony Lester who founded the Chelsea Arts Club “Sparkies” is determined to stay positive: “I dance, I make a fool of myself - I don't care whether people are laughing at me or with me.”

Now, all we have to do is come up with an idea for World Parkinson’s Day 2026. How about it, Gillian?