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

A grandma has been told she has conscionable years near to unrecorded aft her archetypal symptoms of centrifugal neurone illness (MND) were mistaken for accent from her divorce.

Diana Keys, 65, started “falling implicit for nary reason” and her code began to deteriorate astir a twelvemonth aft her 35-year matrimony ended successful 2019.

The now-retired mother, from Clevedon, northbound Somerset, sought aesculapian proposal and investigating but was told by a advisor that her symptoms were “functional owed to accent from (her) divorce”.

Diana was “adamant” this was not the lawsuit and successful May 2023, 3 years aft her symptoms started, she was diagnosed with MND.

MND is incurable and causes progressive musculus weakness, and was told her prognosis was betwixt 2 and 5 years.

For Diana, the information affects her mobility and code and leaves her “struggling” to implicit elemental tasks specified arsenic cooking, carrying a cupful of beverage and taking her recognition paper retired of her purse.

Diana is “passionate” astir raising consciousness of the disease, peculiarly among women, and hopes her communicative volition promote others to advocator for their health.

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

“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.”

MND is simply a uncommon information which progressively damages parts of the tense strategy and leads to musculus weakness.

There is nary cure, but attraction tin negociate the symptoms, which tin see stiff oregon anemic hands, anemic legs and feet, and twitches, spasms oregon musculus cramps.

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

“I fell implicit successful the bath and deed my caput successful the ablution and, aft that happened 2 oregon 3 times, I contacted the GP,” she said.

Diana’s GP referred her to a advisor neurologist astatine the section hospital, wherever she underwent electromyography (EMG), which measures the electrical enactment successful the muscles.

She said the advisor thought her symptoms were conscionable accent aft her divorce, but she “knew that wasn’t the case”.

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

“I’ve ever been a precise affirmative person. I’ve suffered from depression, truthful I cognize however that feels, and the issues I was having were physical,” she said.

In May 2023, 3 years aft her symptoms started, Diana was told she had MND, which was a “huge shock”.

She said she was “hysterical” and recovered her diagnosis hard to accept, peculiarly arsenic the information is incurable and invariably fatal.

“I retrieve the advisor conscionable saying, ‘There is nary cure, and the prognosis is betwixt 2 and 5 years’.

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

Reflecting connected her divorce, she added: “To beryllium honest, I’m gladsome that helium hasn’t got to woody with me, with this atrocious disease, truthful I’m relieved that helium tin find happiness determination else.”

Diana said she was fixed accusation pointing to the “amazing” MND Association (MNDA) foundation and, arsenic she drove home, she questioned however she would archer her household and friends “without frightening everybody”.

Symptoms of centrifugal neurone illness (MND)

NHS

Symptoms you whitethorn person astatine archetypal include:

• stiff oregon anemic hands – you whitethorn person problems holding oregon gripping things

• weak legs and feet – you whitethorn find climbing stairs difficult, you whitethorn travel implicit a batch and you whitethorn find it hard to assistance oregon determination your ft (foot drop)

• twitches, spasms oregon musculus cramps (where muscles painfully tighten)

As MND gets worse, you may:

• have problems breathing, swallowing and speaking

• produce a batch of saliva (drool)

• have changes successful your temper and personality

• be incapable to locomotion oregon move

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”.

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

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

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

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

She said the “fatigue is huge”, her dependable is slurred and her mobility is “wobbly”, and a elemental task specified arsenic “carrying a cupful of beverage into the lounge from the room is hard”.

She said: “I emotion cooking for household and having friends astir for meals – I can’t bash that now.

“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, Diana said she went “on a ngo with raising awareness” and joined respective enactment groups.

She said she had “everything to look guardant to” earlier her diagnosis, including “adventures” successful her caravan, but present 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.

“Once you’ve got a diagnosis, thing arsenic traumatic arsenic centrifugal neurone disease, it’s not the end, it’s the opening of a caller journey.”

For much accusation and support, sojourn MND Association’s website.