A mother-of-two has warned others to seek help for unusual symptoms and press GPs for answers — after a doctor failed to spot the earliest warning signs of devastating motor neurone disease (MND).

Often referred to as ‘locked in syndrome’, the life-limiting condition attacks the body’s nerves, causing progressive weakness and eventually robbing sufferers of their ability to walk, talk and eat.

For Diana Keys, 65, from Clevedon, north Somerset, who was diagnosed with the disease in 2023, MND is gradually affecting her ability to do the simplest everyday tasks, like hold a cup of tea.

Doctors have told her she has between two and five years to live.

The former school administrator first realised something was wrong in 2020, when she began tripping over ‘for no reason’.

‘I fell over in the bathroom and hit my head in the shower,’ she said. 

‘And, after that happened two or three times, I contacted the GP.’

The doctor referred her to a consultant neurologist at the local hospital, where she underwent electromyography (EMG) — a test that measures the electrical activity in the muscles.

Diana Keys was told her random falls were likely the result of stress – but she knew that wasn’t the case

However, the consultant told her there was nothing to worry about, dismissing the symptoms as ‘stress’ resulting from her divorce the previous year. 

Falls are not uncommon in older age. Studies show that one in three over 65s have at least one fall a year.

But within a few weeks Ms Keys developed two other concerning symptoms:  fasciculation (muscle twitching) and weakness in her voice.

She said at this point, she was certain the problem wasn’t psychological.

‘I’ve always been a very positive person,’ she said.

‘I’ve suffered from depression, so I know how that feels, and the issues I was having were physical.’

Eventually, after pushing for further testing, she was dealt the devastating diagnosis of MND in May 2023.

The news came as a ‘huge shock’, leaving Ms Keys ‘hysterical.

‘I remember the consultant just saying, “there is no cure, and the prognosis is between two and five years”,’ she said.

Diana Keys with her two children Alasdair and Megan

She went into ‘admin mode’ and carried on working as a primary school administrator until November 2024, as she ‘needed to feel in control of something’.

The symptoms have got worse over the years. 

‘Becoming the cared-for as opposed to the carer is incredibly hard,’ she said. ‘I still wake up every day and think, come on Di, you can walk properly today, and then I can’t.

I know that I will have to accept this at some point.’

Fortunately, having moved into a bungalow soon after the divorce, she has not had to make too many alterations to her home.

Her garden has been landscaped for accessibility and safety, with help from the Motor Neurone Disease Association, and she is looking to widen her door frames to accommodate a wheelchair in future.

The fatigue is ‘huge’, her speech is slurred and mobility is ‘wobbly’.

‘I love cooking for family and having friends around for meals – I can’t do that now,’ she said.

‘I can’t cut food properly and, when I eat socially, I tend to get things stuck in my throat, which is embarrassing, so I have to eat alone now.

Scientists have long linked MND, also known as ‘locked in syndrome’ with toxic substances in the environment including exposure to metals as well as pesticides. The condition was famously suffered by the acclaimed scientist Stephen Hawking 

‘Socially, it’s been hard because it takes a lot of effort to speak and walk – all the normal things – and I had to have my hair cut because I couldn’t manage to style it properly.’

To help cope with her diagnosis, Ms Keys said she went ‘on a mission with raising awareness’ and joined several support groups.

 She is adjusting to a new way of life and wants to help others with MND feel less alone.

‘My progression is relatively slow, so I’m hoping that I’ll get as long as I can,’ she said.

‘I keep looking for a sell-by date code on me, but there isn’t one, so I just keep going.

‘I can be a glass half empty person sometimes but, since my diagnosis, I’ve tried not to bring other people down – I try to be stoic.

‘I try to keep a sense of humour and count my blessings, so I’ve got a lot to live for.’

Perhaps the most well-known figure with motor neurone disease is the renowned physicist Stephen Hawking who was diagnosed with the condition in 1963 — and given just two years to live.

He died 55 years later in 2018, having spent his career completing groundbreaking scientific work, including the discovery of ‘Hawking radiation’ – the fact black holes are not really black but emit energy due to particles that constantly pop in and out of existence in a vacuum.