On the tip of my tongue - talking about Aphasia

In January 2019, while working in London, Jonathan Hirons’s life suddenly changed.

He remembers sitting in a business meeting with colleagues discussing a work project when he “began to feel strange”.

Jonathan soon found that he couldn’t make changes to the document he was working on, and he began to struggle to find the words to speak.

Fortunately, realising something was very wrong, his colleagues acted quickly and called an ambulance.

Jonathan was rushed to University College Hospital, where CT and MRI scans showed he had suffered a stroke caused by a bleed on the brain. He spent five nights in hospital and was diagnosed with aphasia.

Following Jonathan’s stroke, many everyday things became a struggle, including work. “My work stopped on that day,” he explained. “Initially, I couldn’t speak properly, and I was unable to read or write”.

Additionally, Jonathan couldn’t remember much of where he lived. He remembered his postcode, but not his address, mobile number and the PIN for his bank account. Jonathan also sometimes had trouble understanding what was being said to him. He could, however, sign his name.

This was a worrying time for Jonathan and his loved ones. He had to stop driving. His wife, Ann, ensured he carried a card with his name and address and contact numbers.

However, recognising the importance of starting the rehabilitation process as soon as possible, Ann also encouraged Jonathan to begin reading out loud.

Every day a small amount of time was set aside to read a few lines of a book. In addition, Ann started using nursery school flashcards to help Jonathan with word recognition and writing.

When speech therapy started, Jonathan vastly improved and is now at the point where he can read and write more fluently.

“Over time and with much help from my wife and speech therapists, I got my speech, my reading and my writing back on track,” said Jonathan. “Even now, I find reading and writing difficult, particularly if I’m tired and I still get words mixed up, but I’m a lot better”.

Jonathan is now using his experiences and creative skills to help others impacted by aphasia with his film ‘On the Tip of my Tongue.’ 
https://youtu.be/3kHmx1TrWxs

After successful funding campaigns, help from the Tavistock Trust and support with PR, the film was finished in September 2022.

“Currently, I am showing it to people in the health industry as a training resource: it recently has been successfully presented to Carers UK,” said Jonathan. He has also produced a film called ‘What is aphasia?’

“So here I am four years later, and I’m still wanting to put the word out about aphasia, so if you read this, please pass it on to as many people as you can so that we can keep the interest going,” he added.

Jonathan said he wants people to understand that aphasia is a hidden disability and that he feels there is a lack of support once the initial rehabilitation is over.

“The main problem with aphasia is it is very difficult to explain. People say, ‘you seem fine,’ but they don’t know about [difficulties with not] being able to form words quickly or following a conversation in a group. Just because you have lost your words, it does not mean you have lost your intellect.

“Recovery from strokes and head injuries vary considerably. Some people can regain the ability to function independently others need more help. Help and support tends to come from charities and the family.” But despite the immense challenges faced by people living with aphasia, Jonathan’s message to others is one of hope. “Persevere. It may seem to be hopeless, but improvements will come. Engage with fellow sufferers and, if possible, join a group”.