A man who developed aphasia after having a stroke says it took six months for him to discover he had the speech condition.
Tom Middlemas, from Edinburgh in Scotland, had a stroke in June 2016 and collapsed mid-shift while working as a breakfast chef.
Despite doctors telling the 59-year-old he had a stroke the same day, it took Tom six months to discover he had developed aphasia.
Aphasia is a language and communication disorder, with a stroke being its biggest cause.
Physically, the dad-of-four suffers with tiredness but also mixes up his words and unintentionally swears as a result of the condition.
Over half of the British public (54%) have not heard of aphasia, despite it impacting 350,000 people across the UK, according to the Stroke Association.
Tom’s life changed following his diagnosis, and he told Metro.co.uk about finding himself in a ‘dark’ place, on the brink of suicide.
‘It is hard to describe what having aphasia is like,’ he said.
‘It feels like you are in a state of physical and mental paralysis, minute by minute, rather than day by day.
‘I thought I’d be back to work the following week but one week turned to a few weeks and weeks turned to months before I realised there was no going back.
‘It destroyed my mental health at the beginning. I found myself sat on my chair or in bed thinking, “How am I going to support my family or pay the mortgage?”
‘Anything and everything used to be a trigger for me like loud settings and noise. I was in a very dark place.’
According to the Stroke Association, there are over 1.3 million stroke survivors in the UK, of which 40% have experienced aphasia following their stroke.
Tom was one of those people and struggled to recognise his symptoms in the months following.
What is aphasia?
Aphasia is when a person has difficulty with their language or speech. It’s usually caused by damage to the left side of the brain, for example, after a stroke.
People with aphasia often have trouble with the four main ways people understand and use language.
These are: reading, listening, speaking, writing or typing.
Speaking problems are the most obvious, and people may make mistakes with the words they use.
This could be sometimes using the wrong sounds in a word, choosing the wrong word, or putting words together incorrectly.
Although aphasia affects a person’s ability to communicate, it doesn’t affect their intelligence which is the biggest misconception.
Aphasia can occur by itself or alongside other disorders, such as visual difficulties, mobility problems, limb weakness, and problems with memory or thinking skills.
It is caused by damage to parts of the brain responsible for producing and understanding language with the most common cause being a stroke.
Other causes include severe head injury, a brain tumour, or a progressive neurological disorder like dementia.
Speech and language therapy is the only way to treat aphasia.
‘I didn’t realise I had aphasia for the first six months after my stroke,’ he said.
‘The words feel like they are in my head and it feels like I am talking properly.
‘It wasn’t until other people recognised I slurred my speech and talked as if I was drunk that I noticed there was a problem.
‘A lot of people don’t have the patience or time for me but I’ve learnt to embrace my disability. When I tell people what is wrong with me they change their tune.’
Tom thanks his family including his wife Joanne Middlemas, 49, for helping him see there is life after having a stroke.
Despite being forced to retire from his job as a chef, Tom took up painting as part of his rehabilitation and enjoys watching ice hockey and is a football coach.
Tom also volunteers as a community connector at his local community centre where he meets with others who have brain injuries once a month over a cup of tea and biscuits.
One of his paintings featured in a recent exhibition at the centre where 90 people attended.
He featured in a new hour-long Channel 4 documentary called ‘When the Words Away Went’ which premiered yesterday and aims to raise awareness and tackle the stigma around aphasia.
‘I’m proud to feature in this documentary,’ he said.
‘It helps provide a platform to people like me with a disability and calls upon the government to invest money into research opportunities.’
Juliet Bouverie, chief executive of the Stroke Association said: ‘Aphasia is very common, affecting over a third of stroke survivors, so it’s disheartening to see such low awareness and knowledge of aphasia amongst the general public.
‘We want to encourage everyone to watch our new documentary, “When the Words Away Went”, featuring stories from three inspiring stroke survivors impacted by aphasia, so the public can better understand the condition and become an ally to those affected.
‘Together we can help make the lives of those living with aphasia a little bit easier.’
Each year on June 16 Tom and his family mark his ‘Stroke Day’ as a celebration of his new chapter of life.
‘Some people think it is a bit weird for us to celebrate my stroke day but I’m just thankful I’m still here,’ he said.
‘Despite my disability, I’m having the time of my life now.
‘My outlook on life has completely changed from giving back to the community and finding hobbies I enjoy.
‘My advice for anyone with aphasia is there is light at the end of the dark tunnel.’
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