Life with aphasia: 'My language went completely' 

When asked a question on radio, Martin Quinn found he couldn't speak. It was a stroke, later diagnosed as aphasia

Martin Quinn who has aphasia at home in Tipperary town.

Martin Quinn was being interviewed on live radio when suddenly he couldn't answer the questions he was being asked. “I knew what I wanted to say but something prevented me from getting the words out,” he says.   

He had had a stroke. Two more were to follow. 

“My language then went completely,” he says. “I couldn’t talk at all.”

Quinn was later diagnosed with aphasia.

“The causes of aphasia include one-off events like stroke, traumatic brain injury, and surgery,” says Dr Molly Manning, a lecturer in speech and language therapy at the University of Limerick. “Stroke is by far the most common of those.” 

According to the World Stroke Association, one in every four people will have a stroke in their lifetimes and one in every three of those will experience aphasia.

The way aphasia presents varies from person to person. To simplify matters, Manning divides it into three different categories.

Martin Quinn who has aphasia at home in Tipperary town.

“Expressive aphasia is the impaired ability to produce words and sentences to express oneself,” she says. “Receptive aphasia is the impaired ability to understand spoken, written, or signed language. Global aphasia is when both expressive and receptive aphasias are present.” 

At one end of the spectrum are those who struggle to find the words they need in conversation. “Think about what it feels like to not be able to remember the word you need to use in a conversation,” says Dr Helen Kelly, a lecturer in speech and hearing sciences at UCC. "This can happen to people with aphasia every time they want to speak.” 

At the other end of the spectrum, she says, are more severe cases, including those unable to say anything.

Quinn, from Tipperary, fell somewhere in the middle of that spectrum following his first stroke aged 52. 

Early intervention is essential

People who have aphasia need speech and language therapy to recover. “Because language processing is so complex and aphasia presents differently from person to person, it requires specialist assessment, diagnosis, and treatment,” says Manning. “It’s important that people with aphasia access speech and language therapy in the early days post-stroke and in the long term as needed.” 

In 2016, Kelly was part of a research group that showed this to be true. Their Cochrane Review found that such therapy improved functional communication, reading, writing, and expressive language. 

Bruce Willis was recently diagnosed with aphasia.

Aphasia came to prominence in March when the family of film star Bruce Willis released a statement saying he had the neurological condition.  

Kelly says the star's diagnosis suggests he has cognitive issues and language difficulty. "This leads me to think that it may be primary progressive aphasia. This is a rare form of dementia where language problems are among the first symptoms. Like all forms of dementia, it gets worse over time.” 

It differs from the more common form of aphasia in important ways. “For most people with aphasia, the language part of their brain is damaged, but other cognitive abilities remain intact,” says Kelly. “Their ability to think, learn, and make decisions isn’t affected. They can also improve over time.”

Willis’s condition affects three in every 100,000 people diagnosed with dementia. 

'I see constant improvements' 

Nine years and a lot of speech and language therapy later, Quinn is now a confident public speaker. “I still have aphasia and can still get caught for words, but I see constant improvements to this day.” 

Like many who live with aphasia, the condition impacted his mental health. “I became embarrassed and anxious about my difficulty communicating,” he says.

Manning isn’t surprised. “Language is a fundamental component of the human experience, essential to our daily lives, relationships, employment, and feeling part of our community,” she says. 

People with aphasia are at higher risk of social exclusion and psychological depression.

Even things as simple as going to a café can seem off limits. “Everything from reading the menu to coping with the background noise and having to order quickly is a challenge,” says Kelly.

This is why she and her students set up the Aphasia Café in 2017. “We worked with the Haven Café in Cork, training their staff and then inviting people with aphasia to meet and communicate in a natural social environment,” says Kelly. “We then moved online during the pandemic and now meet every fortnight to connect and practice chatting.” 

Until recently, there has been a widespread lack of understanding of aphasia. A 2021 National University of Galway study asked 600 people if they had heard of the condition - 20% had, but only 5.5% knew anything about it.

This explains the confusion over Willis’s diagnosis. It also explains the frustration felt by Quinn.

“Aphasia meant that I had to retire from work but over time, I’ve been able to return to volunteering and to my interest in writing,” says Quinn. 

“During lockdown, I even managed to research and write a book:  Tipperary People of Great Note. That was a huge achievement for me and proof positive that a life with aphasia can be a good life.” 

Willis’s diagnosis is devastating; however, this needn’t be the case for most people with aphasia. 

“Aphasia causes difficulties communicating,” says Kelly. “But people’s intelligence is not affected, and most importantly of all, they can get better.” 

• June is international aphasia awareness month
• For more information about aphasia and the supports available, visit www.headway.ie, www.irishheart.ie, www.aphasiaireland.ie, and www.iaslt.ie.