- EXPLORE FURTHER: I was trapped inside my body for a year... but later regained my health
A woman who has two children has cautioned others to look out for uncommon symptoms and insist their General Practitioners provide solutions, following an instance where a physician overlooked the initial indications of severe motor neurone disease (MND).
Commonly known as 'locked-in syndrome,' this debilitating condition affects the nervous system, leading to gradual weakening until individuals lose their capacity to walk, speak, and even eat.
For Diana Keys, aged 65, from Clevedon, located in northern Somerset, who received an diagnosis for the condition in 2023, motor neurone disease (MND) is progressively impacting her capability to perform even the most basic daily activities, such as holding a cup of tea.
Physicians have informed her that she has roughly two to five years left to live.
The ex-school administrator initially noticed an issue in 2020, when she started stumbling for seemingly no reason.
"She mentioned that she tripped in the bathroom and bumped her head in the shower," he explained.
'After this occurred two or three times, I reached out to the GP.'
The physician recommended that she consult with a specialist in neurological disorders at the nearby hospital, where she had an electromyography (EMG). This procedure assesses the electrical activity within her muscles.
The consultant assured her that there was no cause for concern, attributing her symptoms to stress stemming from her divorce the prior year.
Accidents from falling are quite frequent among elderly individuals. Research indicates that approximately one out of every three people above the age of 65 experiences at least one fall annually.
However, after several weeks, Ms. Keys experienced two additional troubling symptoms: muscle twitches known as fasciculations and a weakening of her voice.
At this stage, she felt confident that the issue didn't stem from her mental health.
"I have always maintained a very optimistic outlook," she stated.
'I have experienced depression, so I understand what that is like, and the problems I faced were related to my body.'
Finally, after advocating for more tests, she received the crushing diagnosis of MND in May 2023.
The announcement was a tremendous surprise, causing Ms. Keys to become extremely emotional and upset.
"I recall the consultant simply stating, 'There is no cure, and the outlook is between two to five years,' " she mentioned.
She switched to 'admin mode' and continued her role as a primary school administrator until November 2024, because she felt 'it was essential to have some sense of control over things'.
The symptoms have intensified over the years.
'Turning into the one who is cared for instead of the caregiver is extremely difficult,' she stated. 'Each morning, I wake up hoping that today will be different, thinking Di, you’ll manage to walk well today, but then I fail.'
I understand that I'll eventually need to embrace this.
Luckily, since she shifted to a bungalow shortly after the separation, she hasn’t needed to make numerous changes to her house.
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 exhaustion is immense, her speech is unclear, and movement is unsteady.
"I enjoy preparing food for my family and hosting dinners with friends — but I can't do that anymore," she stated.
I'm unable to chop food correctly, and whenever I dine with others, I often end up with bits getting lodged in my throat, making me feel self-conscious, so I've started eating solo now.
Socially, it has been challenging because speaking and walking—these everyday activities—took considerable effort. Additionally, I had to get my haircut as I was unable to style my hair correctly.
To assist with her diagnosis, Ms Keys mentioned she embarked 'on a mission of raising awareness' and became part of various support groups.
She is adapting to her new lifestyle and wishes to assist individuals with MND who may feel isolated.
'I am progressing quite slowly, so I'm hoping to extend my time as much as possible,' she stated.
I constantly search for an expiry date coded on me, but since there isn't one, I simply carry on.
I tend to see things from a more pessimistic viewpoint at times, but after my diagnosis, I've made an effort not to drag others down – I strive to remain resilient.
'I make an effort to maintain a good sense of humor and appreciate what I have, which means I have plenty to look forward to.'
One of the most recognized individuals with motor neuron disease is the famous physicist Stephen Hawking, who received his diagnosis in 1963—and was initially given only two more years to live.
He passed away 55 years later in 2018 after dedicating his professional life to pioneering scientific research, which included uncovering what we now call 'Hawking radiation.' This phenomenon reveals that black holes aren’t entirely dark as they radiate energy because of particles that continuously appear and vanish within a vacuum.
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