Wonderful new initiative gives voice to aphasia sufferers in Donegal

Social Inclusion Week takes place in Donegal from March 26 to 30, and one particular event is aimed very much at individuals who may be feeling isolated because of a particular condition.

The Aphasia Conversation Group members are inviting anyone with the condition to join them for a friendly chat that might well turn out to be life changing in the most positive way.

Aphasia (pronounced ah-fay-zee-ah) is an acquired language impairment. It is caused by damage to the parts of the brain associated with language. 

Often, people who suffer aphasia can become socially withdrawn as they struggle with different aspects of communication. Their speech can be slow, or they may have difficulty in formulating sentences, or in interpreting what is being said to them. It can also affect language and communication in other ways.

People with the condition can feel very isolated, but it is in fact much more common than they might realise.

One man is on a mission to bring people with aphasia together in a peer-supported environment where they can relax and chat without fear of feeling judged.

Larry Masterson is a stroke survivor with a background in working in the health services, from which he is now retired.

His life changed eight years ago, when at the age of 57, while in the Mater Private Hospital recovering from heart surgery, he suffered a stroke.

As Larry began to rebuild his life, he felt there was a need for peer support and he founded the group ‘Different strokes for different folks.’

“It was a big help, getting people together, chatting, supporting each other,” he said.

The Irish Heart Foundation then set up a support service in Letterkenny, taking up the mantle.

Larry was happy to take a step back from the organisational side of things as he is also involved in offering a patient’s voice in a healthcare partnership with a view to improved treatments. 

“A person with lived experience offers a huge insight and allows medical professionals to gain a better understanding of a condition,” he said.

It was during lockdown that Larry came across the concept of an aphasia café, or aphasia conversation group.

“I found out about a group in Cork called the Aphasia Café and I joined them for a virtual chat,” he said. 

Larry found the experience immediately beneficial. And being a man with a very proactive attitude and a desire to see others enjoy the same benefits, he set the wheels in motion to set up a similar group for people in Donegal.

Larry is quick to point out that there are good adult speech and language services in the region, and he has the full support of Senior Speech and Language Therapist, Dr Louise Sterritt.

Louise explains more about the condition, and how it can affect people.

“Stroke is a common cause of aphasia,” she said.

“Aphasia can also be caused by brain injury, tumours and infections. Up to 10,000 people every year are diagnosed with stroke in Ireland and aphasia affects approximately one in three stroke survivors. 

“This means that aphasia is more common than you think, affecting more people than Multiple Sclerosis and Parkinson’s Disease combined. In Donegal, an estimated 100 people per year experience aphasia after stroke.”

Louise tells us that aphasia can affect speaking, understanding, reading, writing and understanding numbers. 

She stresses: “It is important to remember that aphasia does not affect intelligence.”

So how does it impact people in their everyday lives?

“When someone is living with aphasia, everyday activities can be difficult, such as having a conversation, watching TV and getting out and about,” said Louise.

“Aphasia can have a huge impact on personal relationships and friendships as well as the ability to work and to take part in hobbies. 

“It can be very isolating: around two-thirds of people with aphasia experience anxiety and/or depression at some point.”

Along with Larry, Louise is involved in running the Aphasia Conversation Group which is being piloted in Donegal. 

She says: “An aphasia conversation group, also known as an aphasia café, offers a supportive environment for people with aphasia to interact and participate in conversations.

“There are Speech and Language Therapists at every meeting to support communication.

“Topic boards and alphabet charts are available to aid communication as needed: this means that everyone can participate in the conversation no matter how much impact aphasia is having on their communication.”

Aphasia conversation groups will not replace traditional speech therapy, but instead aim to reach a level that one-to-one sessions cannot. There is a focus on supporting social inclusion and participation in a wider society. 

It is fitting, then, that the open morning is taking place during Social Inclusion Week 2023.

As well as more information about the group at the open morning, there will also be information on one-to-one Speech Therapy for people with aphasia and other post-stroke communication difficulties, such as dysarthria and apraxia of speech. 

The theme of the meeting is "What is aphasia?" 

“Everyone is invited along to the meeting,” said Louise. 

“We welcome people with aphasia and their loved ones from all across Donegal as well as professionals working with people with aphasia. There will be tea, coffee and treats and you can learn about the lived experience from people who have been living, and thriving, with aphasia.”

The open morning will take place downstairs in the Central Library, Letterkenny, on Tuesday  March 28 and everyone is welcome to drop in between 11am and 1pm. For further information, please contact Louise on 087 1047333.

Larry, meanwhile, remains a shining light in how despite the effects of stroke - many of which are invisible - you can still lead a meaningful and productive life. He shows through his own actions that you can continue to have a positive impact in your community, among your peers, and those who need support. 

He is hopeful that the Aphasia Conversation Group will help more people gain confidence, perhaps even to take on advocacy roles that will benefit themselves and those living with similar conditions.

With his wife Winifred now also retired from the health services, the couple are settling into life at a different pace. A great source of joy is having their beloved grandchild living nearby, and Larry beams when he talks about spending time with her. 

You really can thrive after physical and emotional trauma, and it helps to have people around you who ‘get’ what you are going through.

If the Aphasia Conversation Group sounds right for you, be sure to pop in and say hello. It could be exactly what you need.