Movers and Shakers - episode 3

Talking about Young Onset Parkinson’s

In episode 3 of Movers and Shakers our conversation in the pub turns to young onset Parkinson’s - young being anyone under 50. Most of us admit we know very little about this variant of the neurological condition but one of the team, Gillian Lacey-Solymar is all too familiar with it - she was diagnosed at 48.

For the first time, we have two guests on the podcast, squeezed in to the narrow space at the back of the Ladbroke Arms where we record. After she was diagnosed at 41 Gaynor Edwards became so fed up with the lack of support for young people with Parkinson’s that she set up her own charity Spotlight YOPD - see their latest campaign video here:

Our other guest is Deborah Carnwath, whose husband was diagnosed with Parkinson’s in 1988 at the age of 38 just a year into their marriage. They went on to have two children and it was thirty years later that he died.

Each of our guests speaks movingly about the challenges of being told you have an “old man’s disease” at an age when you want and need to work, and of tangles with a benefit system that does not seem to recognise the difficulties facing young onset “Parkies”.

But, as ever, we also find dark humour in Parkinson’s - Gaynor’s description of people getting bored with her condition had us in stitches.

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Episode 3 of #MoversAndShakers focuses on young onset Parkinson’s- people who get it under 50. The fabulous Gaynor Edwards of @SpotlightYOPD is our guest - and even manages to see the funny side

We continue to be hugely gratified by the enthusiastic response to the podcast and we are planning a special mailbag edition, reading out some of your messages and trying to answer your questions. So do keep listening - and send your thoughts to feedback@moversandshakerspodcast.com.