Fylde woman relives Motor Neurone Disease family hell in heartfelt play inspired by death of brother-in-law from Blackpool who 'loved life'

Steve Hurst Snr was a ‘really youthful’ man who loved playing football and golf, and entertaining his friends.

But in 2017 the business owner/builder started to experience some subtle changes that led to the devastating diagnosis at age 64.

Sister-in-law, Jo Catlow-Morris, 60, said: “His hands were the worst-affected. He loved to build and make things, he was a really physical person. That’s what was so heartbreaking. It was little things like struggling to get the key into the door, fasten buttons, signing a paying-in slip at the bank.”

And he reluctantly had to give up work, as his fine motor skills declined.

Jo, a scriptwriter, had known Steve Snr since she was six years old, when he had begun dating her older sister, Yvonne.

She’d visited around once a week, in the three years until his death in 2020.

She added: “I would get off the bus near Oxford Road, and call into Greggs to get some cake. I had to slice them into little pieces to make it easier for him to pick up. It got to the point where he couldn’t do anything for himself.”

While she could only see the effect of the illness from the outside, she said the hardest part was watching the loss of dignity. Motor Neurone Disease currently has no cure, and it can happen to anyone, at any age.

“You want to do everything yourself but there's a sudden realisation that you need help. It’s that pride and sudden loss of dignity that is so hard to deal with. You really become a child again.”

The disease attacks the brain and spinal cord, and affects around 5,000 people in the UK at any one time.

Steve Snr passed away at Trinity Hospice, on Jan 5, 2020.

And his death inspired Jo to write a play. based on what her family had been through.

Locked In charts the 29 months’ journey of The Man, from just before his diagnosis, to his death. Everyday words and conversations are mixed with ‘expressionistic physicality’ to create a starkly visual and emotionally intimate play.

One of the scenes is called ‘Dignity’, and she described one character as being an ‘omnipresent figure’ that represents the disease.

She said: “This figure just tortures and humiliates the man, and the woman by proxy. I read it to my sister and she said I really got into her psyche. It was as though they had this interloper in the house, and she wanted to scream at it and grab it - just like the woman does in the play.”

And the play has been endorsed by the MND Association.

MNDA North, said: “This is an incredibly powerful piece, showing the devastation that the disease can bring to individuals and families. It will take an important message out into the community.”

Locked In is showing at Art B&B, 180 The Promenade, on Nov 8, 9, and 10, 2022. Tickets are £10. Visit https://www.facebook.com/events/391064573216477 for more info.