Woman told she has just years to live after deadly disease mistaken for stress

A grandmother has been told she has just years left to live after her first symptoms of motor neurone disease (MND) were mistaken for stress from her divorce.

Diana Keys, 65, started “falling over for no reason” and her speech began to deteriorate about a year after her 35-year marriage ended in 2019.

The now-retired mother, from Clevedon, north Somerset, sought medical advice and testing but was told by a consultant that her symptoms were “functional due to stress from (her) divorce”.

Diana was “adamant” this was not the case and in May 2023, three years after her symptoms started, she was diagnosed with MND.

MND is incurable and causes progressive muscle weakness, and was told her prognosis was between two and five years.

For Diana, the condition affects her mobility and speech and leaves her “struggling” to complete simple tasks such as cooking, carrying a cup of tea and taking her credit card out of her purse.

Diana is “passionate” about raising awareness of the disease, particularly among women, and hopes her story will encourage others to advocate for their health.

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

“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.”

MND is a rare condition which progressively damages parts of the nervous system and leads to muscle weakness.

There is no cure, but treatment can manage the symptoms, which can include stiff or weak hands, weak legs and feet, and twitches, spasms or muscle cramps.

After Diana and her husband “drifted apart” and divorced in 2019, she started falling over, which was “confusing and frightening”.

“I fell over in the bathroom and hit my head in the shower and, after that happened two or three times, I contacted the GP,” she said.

Diana’s GP referred her to a consultant neurologist at the local hospital, where she underwent electromyography (EMG), which measures the electrical activity in the muscles.

She said the consultant thought her symptoms were just stress after her divorce, but she “knew that wasn’t the case”.

After then experiencing fasciculation (muscle twitching) and noticing her voice was deteriorating, she pushed for further testing.

“I’ve always been a very positive person. I’ve suffered from depression, so I know how that feels, and the issues I was having were physical,” she said.

In May 2023, three years after her symptoms started, Diana was told she had MND, which was a “huge shock”.

She said she was “hysterical” and found her diagnosis difficult to accept, particularly as the condition is incurable and invariably fatal.

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

“I just thought, ‘Oh my God, that’s awful’.”

Reflecting on her divorce, she added: “To be honest, I’m glad that he hasn’t got to deal with me, with this awful disease, so I’m relieved that he can find happiness somewhere else.”

Diana said she was given information pointing to the “amazing” MND Association (MNDA) charity and, as she drove home, she questioned how she would tell her family and friends “without frightening everybody”.

Symptoms of motor neurone disease (MND)

NHS

Symptoms you may have at first include:

• stiff or weak hands – you may have problems holding or gripping things

• weak legs and feet – you may find climbing stairs difficult, you may trip over a lot and you may find it hard to lift or move your foot (foot drop)

• twitches, spasms or muscle cramps (where muscles painfully tighten)

As MND gets worse, you may:

• have problems breathing, swallowing and speaking

• produce a lot of saliva (drool)

• have changes in your mood and personality

• be unable to walk or move

She said 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”.

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

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

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

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

She said the “fatigue is huge”, her voice is slurred and her mobility is “wobbly”, and a simple task such as “carrying a cup of tea into the lounge from the kitchen is hard”.

She said: “I love cooking for family and having friends around for meals – I can’t do that now.

“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.

“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, Diana said she went “on a mission with raising awareness” and joined several support groups.

She said she had “everything to look forward to” before her diagnosis, including “adventures” in her caravan, but now 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.

“Once you’ve got a diagnosis, something as traumatic as motor neurone disease, it’s not the end, it’s the beginning of a new journey.”

For more information and support, visit MND Association’s website.