Lost for words? Brain in a fog? Wondering if you have the same condition as actors Bruce Willis or Emilia Clark? You may be one of thousands of people who live daily with aphasia and don't even realise it.

June is Aphasia Awareness Month and this year AphasiaNZ is spreading awareness about 'living well with aphasia”.

So what is aphasia?

Aphasia is caused by damage to one or more of the language areas of the brain. Most often, the cause of the brain injury is a stroke, which occurs when a blood clot or a leaking or burst vessel cuts off blood flow to part of the brain.

This year the theme of Aphasia Awareness Month is ‘Living well with aphasia'. Image: AphasiaNZ.

A Mount Maunganui resident says she has been living with aphasia for much of her life, only realising what the condition was after talking with Aphasia New Zealand's Tauranga Community Aphasia Adviser Kate Milford.

'I had a serious work-related brain injury when I was 26, while working at Wellington Hospital,” says the Mount resident.

'A large industrial fire extinguisher fell off a wall directly onto my head while I was packing up blood products.”

She fell back onto the floor, and says she saw the stars often shown in cartoons.

'It was weird. I was actually okay for the rest of the day and even the next morning thought I was fine and went off to work.”

Over the next 48 hours, she realised she was experiencing delayed concussion and found that the language part of her brain had been affected.

'On the second day, I was trying to tell my boss about it, and struggled to find the words. I could sort of see a word and knew it was there but I couldn't find it.”

She finally managed to get the disjointed words out and he took her across to the hospital's emergency department, leaving her with medical staff where she found she had to attempt to explain what happened all over again.

'I just didn't have the words. They sent me home; I got there about two hours later.”

Still thinking she just had concussion, she took two weeks' leave and returned to work.

'But then I found for years afterwards, when I got tired I couldn't find words. Or if there was a lot of noise and crowds around me. I found supermarkets and malls overwhelming with all the distraction of lights and sounds.

"If I was with a lot of people who were all talking rapidly, I'd just be silent. Like with my four sisters who I love dearly but when they get together they all talk and it becomes like a blur. They ask me what I think and by the time I form words they've moved on to the next topic.”

She says it can be overwhelming at cafés and other places where a lot of conversations are going on.

'I find that I can't hear what I'm saying and then start being unable to process words, so start talking louder. Often whoever I'm with asks me to speak quieter. It's a weird experience.

'Over the years I've wondered if I'm a bit autistic, or just a weird introvert. I often feel lost in a sense of isolation and calmness which doesn't really bother me but just seems unusual when I observe others around me.

"I loved going through lockdown completely alone for 70 days, everything in my mind calmed down. Turns out I have aphasia, who knew?”

Kate says staying away from a busy café can help.

'Most of us talk fast and someone with aphasia can't process it.”

This year the theme of Aphasia Awareness Month is ‘Living well with aphasia'. Image: AphasiaNZ.

She says we will all know someone who has aphasia.

'People can become lost for words. It's like their brain is a library – the words are like books – everything has its place. But then an earthquake goes through… the words are still in the library but nothing's on the shelf and you can't find it.”

She says most people who have aphasia have a sudden onset due to a stroke.

'One of my group had her first stroke in her 20s. She's gone through most of her life with it and it can affect all ages.

'Bruce Willis has aphasia and now his family have said he has PPA - primary progressive aphasia - which is a type of aphasia with a gradual onset due to ongoing damage in the frontal and temporal lobes of the brain. He's lost his words.”

She says people taking epilepsy medicines can also have the experience of 'wading through fog”.

'We've all got something that doesn't work quite right and if we're a bit more understanding and patient with each other everything can work just fine.”

This year the theme of Aphasia Awareness Month is ‘Living well with aphasia'. Image: AphasiaNZ.

AphasiaNZ has been going about 16 years since 2007. Kate Milford, a speech language therapist who previously worked for Auckland DHB, helped to launch the organisation while living in Auckland. The national head office moved to her new home city of Tauranga around 6 years ago.

'We started very small at the beginning.”

As well as being the community aphasia adviser for Tauranga, she also supports the team around New Zealand, with community aphasia advisers (who are all speech therapists) based in Auckland, Waikato, Hauraki/Thames, Tauranga, Rotorua, Taupo, Wellington, Christchurch, central Otago, Dunedin and Invercargill.

'A lot of the work is with adults who have aphasia after they had strokes. But the referrals for people with progressive aphasia are increasing.”

Funding for Aphasia NZ is an ongoing focus.

'The health system gets stretched but your aphasia doesn't.

'The waiting list to see a speech therapist in New Zealand can be around six months once you go home from hospital but the research says you need to see someone within six months of your injury.”

Funding comes from sources such as Tauranga City Council, TECT, Bay Trust and Lottery funding.

Kate would like people to be more aware of living well with aphasia.

'You will know someone who will have it. You can support people around you. Slow down and take time over conversations. Bruce Willis has helped a lot with raising awareness of aphasia. The more people talk about it the better the community is.”

To learn more about aphasia go to Aphasia.org.nz