Motor neurone disease makes man 'prisoner' at home

A Nottingham man whose life has been turned upside down by a devastating diagnosis wants to educate people on how isolating living with motor neurone disease (MND) can be.

Guy Williams had been working as a self-employed business analyst and hypnotist when he found out last February he had the muscle wasting disorder.

He said: "It hit me like a tonne of bricks.

"There is no effective treatment, there is no cure, it's classed as a terminal disease and you get progressively worse and worse."

The debilitating condition which affects people's ability to move, talk and breathe has turned the 48-year-old's third floor flat into a virtual prison, as he is unable to leave home most days due to the stairs.

Mr Williams said being stuck in the Derby Street flat, his home since 2019, each day left him in "a very dark place".

"Having motor neurone disease is incredibly difficult," he said.

"When I was diagnosed last year I lost 12kg in the space of a few weeks and that was all muscle loss, it stops the muscles from regenerating so I have weakened muscles in my leg meaning I can't walk anywhere.

"I can't get up and down the stairs in my apartment and I've got weakened hands and fingers meaning I have real trouble even looking after myself and cooking which is one of the things I used to love to do.

"It is challenging to say the least.

"Even if I get to the bottom I can't then walk any distance. I end up falling over and smashing my face, smashing my glasses. Being in the flat is trapping me, I'm a prisoner in my own home."

Mr Williams lost his active social life, attending gigs and festivals, visiting the Arboretum and going for coffee with friends.

Nottingham City Council is moving Mr Williams into a ground floor flat at the end of January but the new property is not wheelchair-accessible - and the cost of buying a suitable wheelchair is also an extreme hurdle for people with the condition to face.

"Having MND is expensive," he said.

"The solutions, they range in price. I've got a tool to help me put on my socks which costs a couple of quid.

"A powered wheelchair costs anything between seven and nine thousand pounds and fitting out a property to be friendly for wheelchairs and helpful for people with MND is costly as well.

"But I'm feeling more positive about it."

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