Wairarapa people who struggle to speak are meeting in Masterton twice a month – taking all the time they need to converse, play word games and relax in a safe environment.
They suffer from aphasia, a language disorder usually associated with stroke, but which can also occur with brain injury, brain tumour, or neurological diseases such as dementia.
Aphasia affects a person’s use of language – finding words and holding conversations, understanding spoken language, reading and writing.
The AphasiaNZ Charitable Trust began a Wairarapa Kōrero Club in February, run by Jennifer Buckley, a trained speech and language therapist and the charity’s community adviser for the lower North Island.
“The group has a loose agenda,” she said. “It can be based around conversations, getting people to talk in a safe space. It’s a place to connect, which is pretty powerful.
“We bring conversation topics to the Kōrero Club – perhaps a joke of the day, or word of the day. We can play word games such as Hedbandz, or Hangman. Sometimes we will have a guest speaker, like a speech and language therapist, or someone from Stroke Central.”
Living with aphasia can be isolating and frustrating, Buckley said.
“Aphasia poses huge barriers to day-to-day living. It’s a hidden disability: it doesn’t affect a person’s intelligence but they are often treated that way. There’s a lack of understanding when they start talking, as the other person doesn’t know what’s going on.
“People with aphasia struggle in loud and busy environments, and with not having enough time to say what they want to. The person they’re talking to may jump in and finish their sentence.”
The new Wairarapa group has four people attending regularly, with more showing interest. The group is unusual because it has more than one person with Primary Progressive Aphasia [PPA] – more rare and therefore harder to diagnose. PPA affects about 20 per cent of people with dementia.
June is Aphasia Awareness Month, with the charity hoping to raise its profile and promote a better understanding of the condition. AphasiaNZ is not government funded and relies on grants and donations to operate. Kōrero Clubs are free, but attendees can become ‘Friends’ of AphasiaNZ for $25.
People can fully recover from aphasia, but some are left with long-lasting effects, Buckley said.
“The brain has an amazing capacity to re-learn. However, people talk about recovery not being linear – they have good and bad days and weeks.”
Part of Buckley’s job is building local communities of people with aphasia – including family members or friends of the person with the condition, who are welcome at the Kōrero Club.
Wairarapa Kōrero Club member Bill Harris said: “I enjoy meeting up with others who understand what it is like to live with aphasia.”
His wife, Shona Harris, added it was great to have Buckley coming to Wairarapa regularly, “keeping locals updated on the latest information and tools available”.
AphasiaNZ offers resources such as a wallet card reading “I Have Aphasia”, an online library and printed resources.
For more information on the Wairarapa Kōrero Club, email [email protected], or phone Jennifer Buckley on 021 063 9934.
This groups is invaluable. I a bit biased, because our facilitator/leader is the best. AROHANUI