A GRAN was given five years to live after her “divorce stress” symptoms turned out to be signs of an incurable disease.
Diana Keys started “falling over for no reason”; and her speech began to deteriorate in 2020, a year after her 35-year marriage ended.
The 65-year-old, who lives in Clevedon, north Somerset, was told by a consultant that her symptoms were “functional due to stress from [her] divorce”; – but she was “adamant”; this was not the case.
In May 2023, three years after her symptoms started, Diana was diagnosed with motor neurone disease (MND), which is incurable and causes progressive muscle weakness.
She was given between two and five years to live.
Diana's 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 weakens muscles over months or years.
It is usually life-shortening and 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”;.
She pushed for further testing after experiencing muscle twitching and having difficulty speaking.
“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,”; Diana 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.”;
New way of life
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”;.
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.
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 style it properly
Diana Keys
“I know that I will have to accept this at some point.”;
Having moved into a bungalow soon after the divorce, Diana has not had to make too many changes 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”;.
What are the signs of motor neurone disease (MND)?
MND isn't a common condition, so if you have the bellow symptoms it's likely they're being caused by another condition, injury or illness.
But it's important to get them checked out by your GP.
It's also worth noting that MND affects everyone differently, so you might not have all of these symptoms.
Symptoms of MND may include:
- Muscle twitching or the sensation of rippling under the skin
- Tingling or pins and needles
- Numbness in hands, feet or limbs
- Fatigue or extreme tiredness
- Tripping over and one or both legs getting thinner – ‘foot drop' can be an early symptom, where one foot sometimes feels weak or drags
- Dropping things due to weak or stiff hands
- Slurred speech or weak voice due to weakness in muscles of the face, mouth, tongue or throat
- Difficulties swallowing, with food, drink or saliva starting to cause coughing or gagging
- Breathing problems
- Mood and personality changes
- Emotional outbursts such as uncontrollable laughing when upset or crying when happy
Source: MND Association
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.”;
