Movers and Shakers: Live from Henley

We end the fifth series of Movers and Shakers with a bonus episode, a recording of some of the highlights of our recent live show in Henley-on-Thames. We were invited to Henley by its very active local Parkinson’s UK group, and members and their friends and relatives packed out the lovely Kenton Theatre where we put the show on.

Sir Nicholas Mostyn, Gillian Lacey-Solymar, Mark Mardell and Paul Mayhew-Archer outside the Kenton Theatre. Picture: Rory Cellan-Jones

The evening, which raised a substantial sum for Parkinson’s charities, included a standup comedy routine from Paul Mayhew-Archer and a song by Henley resident and music industry legend Mike Hurst, who is living with Parkinson’s. As both Paul and Mike have their own future fundraising performances planned we did not want to steal their thunder (and punchlines) by putting them online.

So what you will hear is the Movers and Shakers burbling away about everything from the merits of cannabis as a Parkinson’s medication to whether our children would want to know if they had the Parkinson’s gene and so might inherit the condition from us.

We are joined for our conversation by two special guests. Lisa Drage, a member of the Henley group, was diagnosed in 2012 with young onset Parkinson’s at the age of 44. She spoke movingly and frankly about going through a psychotic episode and about the embarrassment of constantly needing desperately to go to the loo and not making it in time.

Professor Michele Hu, a neurologist at Oxford’s John Radcliffe Hospital (and Paul’s doctor), was full of useful advice about the sleep problems that most of us face. She tells us about sleep hygiene - thinking about everything you do in your daily routine, from eating and drinking to exercise, and discussing with your doctor how to adapt it to improve your sleep.

She talks about restless leg syndrome as a cause of insomnia amongst “Parkies” and tells us there is medication which can sort that out. And her best tip - if you do find yourself staring at the bedroom ceiling at 2am do not lie awake for more than 30 minutes. Instead, get up and “do something boring” such as doing a jigsaw. Above all, says Professor Hu, do not get in a vicious cycle where worrying about not sleeping raises your anxiety levels, so you worry more about getting to sleep..

Movers and Shakers is now going to take a short nap. We will be back with a full series 6 in September, including episodes on cannabis and on Parkinson’s in Africa. But over the summer we will also have a short series of Parky Profiles,, where we meet fascinating people living with Parkinson’s.

We are also determined to keep up the momentum behind our Parky Charter petition. We have until September to get the 100,000 signatures needed to force a new parliamentary debate on our manifesto for better Parkinson’s care, so we are planning to spread the word with a couple of events, the first in Brighton on May 27th.

So please, if you have not signed so far, do it here - and tell all your friends!