Movers and Shakers: Reasons to be Cheerful

For the final episode of Movers and Shakers for 2024 we were determined to be in upbeat mood. This latest series of the award winning podcast has had some wonderful moments - from the exuberance of the Dutch neurologist Bas Bloem to our lively discussion of what pets can do for people with Parkinson’s during which Jeremy Paxman was taught how to stop his dog Derek barking when he sees other dogs on the television.

But lately we have been featuring some rather hard subjects, including assisted dying and late life care (both excellent episodes), and the news from the research world has been depressing with the failure of the phase 3 trial of exenatide, which had promised to be the first disease-modifying drug.

So Gillian Lacey-Solymar and I decided that what had been scheduled to be a mailbag edition where we read out your comments should be tweaked a little to become what we have called the “Reasons to be Cheerful” episode.

This was partly sparked by a wonderful email I received from a woman called Anne Oxborough, who had driven me around at a book festival a couple of years ago. We had talked about Parkinson’s and she was writing to say she had thought back then she might have it and now the diagnosis had been confirmed. But she wanted to know what all the fuss was about:

“Maybe I’m in a naive place at the moment but it seems to me that some people’s reactions to my news are barely disguised horror, fed by slightly old-fashioned facts/ignorance. Though it’s bad news there are surely much worse things? So I’m just wondering if you can point me in the direction of some hopeful stuff on Parkinson’s and/or indeed if there are some optimistic threads to come on M & S. “

In the meantime she offered us her recipe for living well with Parkinson’s:

“Exercise; Socialise; Eat Fibre; Pace Myself..”

Round the table in the pub the five of us - Jeremy Paxman was kept away by what he described as “a gammy leg” - were joined by two old friends of the podcast, Gaynor Edwards and Emma Lawton. We all took up Anne’s challenge. to find reasons to be cheerful.

Gillian Lacey-Solymar told us all her happy things began with “p” - there was her triumph in the World Parkinson’s Ping Pong tournament back in October, and there was the poetry and painting she had taken up since her diiagnosis, plus all of the people she had met.

Nick ‘the judge” Mostyn said he was accused of being too cheerful: “People say, surely you should be more upset? Surely you should be more gloomy …,because you seem to be relentlessly positive. Mr. Justice Pollyanna is my nickname.”

Paul Mayhew-Archer was cheerful because the DBS (Deep Brain Stimulation) system he had installed had been tweaked that morning and that had left him feeling energised.

Mark Mardell also seems energised but strangely it is the debate about assisted dying that has cheered him up or at least given him a sense of purpose as he has been hired by Prospect magazine to cover the subject.

As for me, I look back on the last two years and realise I have had two books published and taken part in an award-winning podcast, reasons enough to be cheerful. In any case the fortitude and determination not to be beaten down by Parkinson’s shown by Gaynor and Emma, both diagnosed at a young age, is a constant reminder to the rest of us to shape up.

Then there is the collective effort to change and improve Parkinson’s care in the UK, manifested in our Parky Charter. This was the year we agreed what we wanted in the charter, took it to Downing Street and got politicians including the new Health Secretary Wes Streeting, to meet us and take our demands seriously.

Of course, we now need action not words - the plight of people in South Cumbria denied a neurology service highlights how much there is to do. But in 2024 we at least put Parkinson’s on the political agenda, and also raised its public profile, not least through our We Will Survive video. (What do you mean you haven’t liked it yet? Get clicking!)

There are plenty more reasons to be cheerful in this episode - along with one more downbeat moment when the judge addresses criticism of his remarks on a BBC report about assisted dying when he said “the likelihood, if you've got Parkinson's disease is your ending is going to be prolonged and very unpleasant.” You can read his full response here.

But mostly the mood is one of positivity and, at one point, uncontrolled hilarity. Paul tells us all the activity we have seen in the community, from sport to standup comedy, is “making Parkinson's sexy again.” It is the “again” that really gets us, but if we have contributed in just a small way to making our degenerative brain disease sexy once more, then it will all have been worthwhile.

We will be back with a new series of Movers and Shakers in the new year, starting with a live event in London in the Middle Temple Hall on January 29th. There are still a few tickets left which you can buy here.