Will , from Norwich, cares for his partner, Neil, who has Parkinson’s. Neil was diagnosed with the condition nine years ago.
Before the Parkinson’s, Will and Neil – who have been together for 24 years – enjoyed a life full of going to the cinema, the theatre, and going for walks.
And although they still live life to the full, there have been changes.
“It’s made me a lot slower in my movements,” says Neil. “I’m slower to eat, I can be a sloppy eater. My sleep pattern is shot to pieces, sometimes I go through a whole night with just one hour sleep.”
Neil said his energy levels were best in the morning, so the pair adapted to make sure important things were done then.
“But a lot of it is fiddly things,” Will, 52, added. “If you asked Neil to move a big bag of compost that’s okay but things like buttons and cuffs are more difficult.”
Will, who works in social care, said the condition had brought them closer together.
“It’s made us stronger and we can’t let it beat us, if you were to stop at every obstacle in life you’d never get anywhere,” he said.
But there had been challenges too, and Will felt strongly about highlighting the needs of carers.
“I don’t have Parkinson’s but I see it every day, people don’t realise how much pressure there is on me, they don’t realise how much unpaid carers do. When you love someone, you do it for life. It’s not just Neil whose life changed.
Emotionally, caring for someone with Parkinson’s is harder than anyone anticipates. People don’t realise how much it changes a relationship – I’m also working, so have that to balance as well.
We’ve actually lost a lot of friends through it. Everybody says ‘How’s Neil?’ …not ‘How’s Will?’ and that hurts. We’ve found out who our genuine friends are.”
Will says anyone in a similar position should reach out to the support networks available.
“If you’re feeling the pressure – and you will – you are not alone. Norfolk Carers have been absolutely wonderful.
Coming to a support group has really helped, although we weren’t ready for it when we first turned up. We’ve accepted the situation now and have been going to the Norwich group in Sprowston for the last two years.”
Will and Neil’s story was featured in the EDP: Click here.
And you can listen to Will telling his story on Future Radio: Click here.