Dunedin-based speech language therapist and community aphasia adviser Meryl Jones said local members of the Dunedin Aphasia NZ Kōrero Group were taking part in a project created by Aphasia New Zealand, on the theme of "until you’ve met it, you just don’t get it".
Participants make a short video, uploaded to YouTube, discussing the impact of living with aphasia for them and their families, and what they would like people to know.
"One of the key messages local group members shared was to ask people to try and avoid jumping in and guessing what they were trying to say, if they were struggling to get their words out.
"They would rather be given the space and time to say it for themselves," Ms Jones said.
People with aphasia also spoke about the loss of friendships they experienced when they developed aphasia.
"It can be awkward to communicate, but people with aphasia are not cognitively impaired — they are the same person inside."
Ms Jones said aphasia was often an invisible disability, which could add to the difficulties of those living with it.
Aphasia is a language disorder caused by damage to the language areas of the brain. While disrupting language, aphasia is not a loss of intelligence, hearing or vision.
Although it is usually associated with stroke (one in three people who have a stroke develop it), aphasia can also occur with brain injury, brain tumour or other neurological diseases.
Aphasia affects a person’s use of language — finding words and holding conversations, understanding spoken language, reading and writing.
Along with aphasia caused by stroke or brain trauma, there is another uncommon form of the condition — primary progressive aphasia, which is caused by gradual degeneration of tissue in the areas of the brain which control speech and language.
Ms Jones said the Dunedin Aphasia NZ Kōrero Group met fortnightly on Tuesdays, from 1.30pm, upstairs at Livingwell Disability Resource Centre, at the corner of George and Bath Sts. The next meeting is on June 25.
"The group has grown over the past year and has become more informal, as group members have become more comfortable with each other," she said.
"That has been really great to see."
For those who can’t make it to a face-to-face meeting, there are other options, and advice is available.
Dunedin also has the Dunedin Aphasia Support Group, run by speech language therapist Alison Zani, which meets on alternate Friday mornings, from 10.30am-noon at Mornington Presbyterian Community Centre.
In addition to raising awareness through the video project and posting awareness material on its Facebook page, Aphasia New Zealand is running a sponsored silence fundraising campaign for children, linked to a Givealittle page.
Participants in the "Say nothing, give a little" campaign seek sponsorship to remain silent for a designated number of hours, meaning they will not talk, write or text on their phones.
"Our hope is that the children will have a bit of fun with this and that they might be encouraged to share the idea with friends, so that we can get as many small people as possible having a go," Ms Jones said.
For more information, or to donate to Aphasia NZ, visit the website www.aphasia.org.nz, or search for AphasiaNZ on Facebook.
For local information, email Meryl Jones at dunedin@aphasia.org.nz
