No country for old men

I’ve found Parkinson’s is just about manageable with the right resources. But what about people who don’t have the money, the connections, the information they need to move forward with confidence?

Six people with Parkinson’s walk into a pub. It sounds like the start of a joke, in fact it was the start of several jokes. I’d have been disappointed if not, given that the six included Vicar of Dibley writer/stand-up comedian Paul Mayhew-Archer.  Even the grumpy Jeremy Paxman made me smile.

They have been meeting there for a while and finally took the plunge to record their musings as a new podcast – Movers and Shakers. The first one was a pleasant half-hour of dottiness from six of the finest brains in the land. A collective lack of dopamine hasn’t blunted their wit or enthusiasm for talking about their careers and their condition.

The other four in the group (Twitter handle @moversand6) are High Court judge Sir Nicholas Mostyn; Gillian Lacey-Solymar, once a BBC reporter and management consultant who now runs a successful events business; Mark Mardell, former BBC Radio 4 presenter and chief political correspondent; and Rory Cellan-Jones, until recently BBC Technology correspondent, who now keeps me up to speed with health technology in his blog Always On.

Parkinson’s and an impressive stack of BBC credentials aside, you’ll notice that what they have in common is that they are communicators – articulate, well-informed, well-connected people. And probably not short of a bob or two. But what about people with Parkinson’s for whom a ‘warm hub’ is not a cosy corner of a Notting Hill pub?

Last week, Claire Jones, a DJ on Leicester Community Radio and @RadioParkies, tweeted:

“We need more diverse voices speaking up about Parkinson’s. I need to hear fellow people managing without the cushion of money. I need to hear the ‘mundane’ of the everyday. Point me in the right direction, I want to listen. I want to feel heard, I’ve no doubt others do, too.”

Rory Cellan-Jones admits:

“We recognise that we are a very privileged group, with the resources and the sharp elbows to make sure we get good treatment. So we will invite guests onto the show to give broader perspectives and to help us understand the state of research into potential cures or the viewpoint of people with young onset Parkinson’s.”

Exercise for all

One thing my money and time cushions do buy me is twice-weekly Zoom sessions with Neuro Heroes. Led by neuro physiotherapists Anna Kharin and Laura Douglas, I’m drawn into an intense hour of exercise that covers a full spectrum – neuroplasticity, co-ordination, strength, cardio, balance and stretch. Small classes mean that everyone gets the same high-quality feedback. Oh, and did I mention fun?

Now Anna and Laura have launched their Community Exercise Fund, which makes these brilliant classes available to people receiving Universal Credit or Pension Credit.

They say:

“Through the Neuro Heroes Community Exercise Fund we hope to reach underserved communities who haven’t had the opportunity to access the physiotherapy or condition specific exercise they could benefit from.” 

This is several steps in the right direction of bringing best practice to more people with Parkinson’s.

Although my address book and money cushion aren’t as fat as those enjoyed by @moversand6, I still have sharp elbows. It’s up to us, as communicators, to keep shouting. But not so loudly that we can’t hear the small voices.

Play > No country for old men > Manuel Backert