Aphasia advocates help share message
The difficulties experienced by people living with aphasia are being spotlighted this month, as New Zealand marks Aphasia Awareness Month.
Aphasia is a disorder of communication, where speaking, reading, writing and/or understanding language is impacted.
Dunedin-based Aphasia New Zealand community aphasia adviser and speech language therapist Meryl Jones said many people in the community did not know what aphasia actually was, despite 29,000 New Zealanders living with the condition.
Aphasia is caused by damage to the language centre in the brain (usually in the left hemisphere), most commonly due to stroke — about one-third of people who have a stroke will experience aphasia.
Brain injury, tumour and infection can also result in aphasia, which affects each person differently.
Ms Jones said aphasia was a difficult concept for the general population, resulting in people with aphasia often withdrawing from social contact.
The situation was summed up by the saying "until you've met it, you just don't get it", she said.
"So, we are working to raise community awareness of aphasia and its impact on people's lives," she said.
People with aphasia had difficulties with communicating, but this did not mean their cognitive abilities were impaired, making it extremely frustrating.
"Because of the very nature of aphasia, it is difficult for people living with it to advocate for themselves," Ms Jones said.
"People with aphasia say they would like people to be more patient and to give them time to get out what they want to say — rather than making assumptions or finishing their sentences for them," Ms Jones said.
"Other people can help by adapting their own communication and getting to know the person with aphasia's own way of communicating."
For therapists, the aim was to give people with aphasia a functional way of communicating, using their strengths, which may include non-verbal strategies, such as gestures.
"We also try to educated the people around them, training up their communication partners to give them the right support.
"A major goal for us is to support people with aphasia to participate in life."
Ms Jones works with a group of Dunedin people who have aphasia through a Korero Club, which meets fortnightly on Tuesdays to enjoy face-to-face conversation.
"We have had great friendships formed among the group, with some describing it as the highlight of their week," she said.
There is also the Dunedin Aphasia Support Group, a community support group for people with aphasia and their partners, families, whanau and/or carers, which meets on Fridays in Mornington. This group can be contacted via facebook.
• For more information and/or support for aphasia, email dunedin@aphasia.org.nz, or phone Meryl Jones on 021 177 0587.
brenda.harwood@thestar.co.nz
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