Shining spotlight on Parkinson’s disease

A SOLD-OUT night of laughter and advocacy for Parkinson’s disease took place at the Kenton Theatre.

The Movers and Shakers took centre stage for a live recording of their podcast on Wednesday last week.

The podcast, which is now in its fourth season, has more than a million downloads.

It challenges stigmas, inspires hope and sparked national conversation through a blend of storytelling, debate and humour.

Five of the six voices behind the podcast, who live with the disease, Sir Nicholas Mostyn, a former High Court judge, Gillian Lacey-Solymar, a businesswoman and former journalist, Rory Cellan-Jones and Mark Mardell, former BBC journalists and Paul Mayhew-Archer, the co-writer of The Vicar of Dibley, attended.

The panel discussed topics including insomnia, the Assisted Dying Bill and psychosis.

Broadcaster Jeremy Paxman, who was due to attend, was absent due to personal reasons.

Lisa Drage, a member on the committee of the Henley branch of Parkinson’s UK, who was diagnosed with Parkinson’s in 2012, was the special guest.

She discussed living with some of the 40 symptoms, including psychosis. She said: “I was a bit nervous, but it was fine. I wanted to do it, as I could let people who are suffering from Parkinson’s know about the symptoms.

“I wanted to talk about my psychosis and the impact that it had. My symptoms have been quite bad this year, and there are so many other things that go with it. It’s hard to manage daily life. Every time you’re out, you’re worried about it, but I’m glad I did it.”

Mike Hurst, record producer and singer-songwriter, who has Parkinson’s, performed a song on acoustic guitar for which he received a warm applause. He said: “I thought it was very interesting because you hear other people talk about the same symptoms that you realise you also had.

“Knowing that there are 40 symptoms at the moment for Parkinson’s, it’s amazing how regular they turn out to be between a group of six people. You do find a similar problem between you.”

He also praised Mr Archer for adding humorous anecdotes during a stand-up comedy performance. He said: “I love Paul, I find him terribly funny — he’s great.”

Michele Hu, a professor at the Nuffield Department of Clinical Neurosciences, University of Oxford and Honorary Consultant Neurologist at Oxford University Hospitals, helped put the challenges into context and explained the medical complexities of the disease.

Profits from the evening were donated to Parkinson’s UK, Cure Parkinson’s, Spotlight YOPD and the King’s Parkinson’s Charitable Fund.

The event also championed the Movers and Shakers “Parky Charter”, a government petition started by Mr Mardell which asks the Government to increase funding for the fastest-growing neurological condition in the world.

As a priority, the petition asks that everyone referred for a possible diagnosis see a consultant within 18 weeks and at least once a year after that.

The five measures listed in the charter include speedy specialists, instant information, Parkinson’s passports, comprehensive care and a quest for a cure.

The petition, which has more than 25,000 signatures, needs to receive 100,000 signatures to be considered for debate in Parliament. A deadline has been set for September 10.

Georgie Parvin and Hattie Sanderson, the event producers, said: “We were delighted to shine a light on those in the local community who have this debilitating disease.

“Parkinson’s is so much more than a shake and a shuffle, with more than 40 different symptoms.

“The night was a great success, and we hope it raised much-needed awareness for people with Parkinson’s, the local Henley Branch of Parkinson’s UK, and the Movers and Shakers’ own Charter — campaigning for better care.

“We aimed to inform as well as entertain our audience, and Paul brought the comedy in bucketfuls.

“We are very grateful to our sponsors — Screaming Frog, Harris Collective and Sofas & Stuff — as well as the Kenton Theatre Community Fund for helping make this event happen.”

Lottie Pheasant, manager of the theatre, said: “We’re incredibly proud that our stage could be a space for powerful conversations and raising awareness around such an important topic.

“I was humbled and inspired by the personal stories shared by the Movers and Shakers and the guests during the evening.”

To sign the petition and read the government’s response, visit www.petition.parliament
.uk/petitions/713714