Mother-of-two given shock diagnosis of 'locked in' syndrome after being hit by symptom millions suffer - she's got 5 years to live

A mother-of-two has warned others to question assistance for antithetic symptoms and property GPs for answers — aft a doc failed to spot the earliest informing signs of devastating centrifugal neurone illness (MND).

Often referred to arsenic 'locked successful syndrome', the life-limiting information attacks the body's nerves, causing progressive weakness and yet robbing sufferers of their quality to walk, speech and eat.

For Diana Keys, 65, from Clevedon, northbound Somerset, who was diagnosed with the illness successful 2023, MND is gradually affecting her quality to bash the simplest mundane tasks, similar clasp a cupful of tea.

Doctors person told her she has betwixt 2 and 5 years to live.

The erstwhile schoolhouse head archetypal realised thing was incorrect successful 2020, erstwhile she began tripping implicit 'for nary reason'.

'I fell implicit successful the bath and deed my caput successful the shower,' she said. 

'And, aft that happened 2 oregon 3 times, I contacted the GP.'

The doc referred her to a advisor neurologist astatine the section hospital, wherever she underwent electromyography (EMG) — a trial that measures the electrical enactment successful the muscles.

However, the advisor told her determination was thing to interest about, dismissing the symptoms arsenic 'stress' resulting from her divorcement the erstwhile year. 

Falls are not uncommon successful older age. Studies amusement that 1 successful 3 implicit 65s person astatine slightest 1 autumn a year.

But wrong a fewer weeks Ms Keys developed 2 different concerning symptoms:  fasciculation (muscle twitching) and weakness successful her voice.

She said astatine this point, she was definite the occupation wasn't psychological.

'I’ve ever been a precise affirmative person,' she said.

'I’ve suffered from depression, truthful I cognize however that feels, and the issues I was having were physical.'

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

The quality came arsenic a 'huge shock', leaving Ms Keys 'hysterical.

'I retrieve the advisor conscionable saying, "there is nary cure, and the prognosis is betwixt 2 and 5 years",' she said.

She went into 'admin mode' and carried connected moving arsenic a superior schoolhouse head until November 2024, arsenic she 'needed to consciousness successful power of something'.

The symptoms person got worse implicit the years. 

'Becoming the cared-for arsenic opposed to the carer is incredibly hard,' she said. 'I inactive aftermath up each time and think, travel connected Di, you tin locomotion decently today, and past I can’t.

I cognize that I volition person to judge this astatine immoderate point.'

Fortunately, having moved into a bungalow soon aft the divorce, she has not had to marque excessively galore alterations to her home.

Her plot has been landscaped for accessibility and safety, with assistance from the Motor Neurone Disease Association, and she is looking to widen her doorway frames to accommodate a wheelchair successful future.

The fatigue is 'huge', her code is slurred and mobility is 'wobbly'.

'I emotion cooking for household and having friends astir for meals – I can’t bash that now,' she said.

'I can’t chopped nutrient decently and, erstwhile I devour socially, I thin to get things stuck successful my throat, which is embarrassing, truthful I person to devour unsocial now.

'Socially, it’s been hard due to the fact that it takes a batch of effort to talk and locomotion – each the mean things – and I had to person my hairsbreadth chopped due to the fact that I couldn’t negociate to benignant it properly.'

To assistance header with her diagnosis, Ms Keys said she went 'on a ngo with raising awareness' and joined respective enactment groups.

 She is adjusting to a caller mode of beingness and wants to assistance others with MND consciousness little alone.

'My progression is comparatively slow, truthful I’m hoping that I’ll get arsenic agelong arsenic I can,' she said.

'I support looking for a sell-by day codification connected me, but determination isn’t one, truthful I conscionable support going.

'I tin beryllium a solid fractional bare idiosyncratic sometimes but, since my diagnosis, I’ve tried not to bring different radical down – I effort to beryllium stoic.

'I effort to support a consciousness of humour and number my blessings, truthful I’ve got a batch to unrecorded for.'

Perhaps the astir well-known fig with centrifugal neurone illness is the renowned physicist Stephen Hawking who was diagnosed with the information successful 1963 — and fixed conscionable 2 years to live.

He died 55 years aboriginal successful 2018, having spent his vocation completing groundbreaking technological work, including the find of 'Hawking radiation' - the information achromatic holes are not truly achromatic but emit vigor owed to particles that perpetually popular successful and retired of beingness successful a vacuum.