Twelve months ago Emma Beesley found herself in a dark place.
The then 34-year-old was struggling with the aftermath of a stroke that completely changed her life.
Forced to move from Woolongong back home with her parents in Seaham, Ms Beesley was frustrated with the slow rehabilitation process, the inability to work, the breakdown in her relationship with her fiance but most of all, by the inability to communicate her thoughts and feelings.
When she was diagnosed with aphasia, it was like the light in her life had been switched back on.
“It was a relief,” Emma, now 35, said. “Knowing what it is, aphasia, it’s brilliant for me. It helps me explain what’s going on.”
Figures from the national Stroke Foundation reveal that of the one in six Australians who will have a stroke during their lifetime, about one in three of those people will develop aphasia.
Aphasia is a result of damage or injury to the language parts of the brain. The disorder gets in the way of a person’s ability to use or understand words.
For Emma, who has expressive aphasia, she knows what she wants to say but the words and sentences do not come out.
Following her stroke two years ago, Emma and her family, mother Kim and father John, were told she had speech problems but it was never labelled as aphasia.
Mrs Beesley said the diagnosis, which came during Emma’s nine week stay with Hunter Brain Injury Service (HBIS) in Newcastle, was a turning point in her daughter’s recovery.
“Just having a name for the problem made her feel like she wasn’t going crazy,” she said.
“When Emma first moved home there was a lot of depression. She’d come and sit outside and you could tell that everything was getting to her but she couldn’t tell us what was going on.
“She got the support she needed at HBIS and a diagnosis. That helped her accept her condition.”
Emma had been living in Wollongong with her fiance and working as the judicial associate to the Family Court of Australia in Parramatta when she had a stroke.
She remembers the day, the stroke and events afterwards clearly.
It had been a Friday. Emma took the day off work because she had a bad headache. About 7.30pm, when her fiance arrived home, Emma went to use the bathroom.
Fifteen minutes later he found Emma on the floor. Unaware she had a stroke and that something was seriously wrong, he put her into bed.
She was left there for 90 minutes.
“In my head I just kept saying ‘I had a stroke. Call an ambulance, call an ambulance’,” Emma said. “My words made no sense. In my head I just though ‘what am I going to do? what am I going to do?’ So, I vomited.”
Emma was rushed to hospital where she stayed for three months.
The cause of the stroke was from a blood clot in Emma’s left carotid artery. The artery dissected, which allowed the clot to travel to the brain.
It robbed Emma of movement in her right arm and leg and unable say anything more than ‘yes’ and ‘no’.
“It was so frustrating,” Emma said.
The focus of Emma’s recovery was on getting her walking. As a result, speech therapy was limited. Eventually Mr and Mrs Beesley took charge.
“We eventually got someone to give us things to do,” Mrs Beesley said. “We got picture cards. She had to learn the names of everything again. She had to learn numbers, colour, everything.
“In hospital, my husband wouldn't let her eat food before she could tell him the utensil.
“She'd look at it and say fork when it was a spoon. It took a while before she could say those words.
“The picture cards were mostly name the object. We could do that but when you asked her what the object was used for she couldn’t say it.
“I distinctly remember one because it broke my heart. It was a picture of a cup of tea. I had to ask her what is it, where would you find it, what do you do with it and all she could tell me was that it was ‘a cup of tea’. Where would you find it? ‘It's a cup of tea’. What would you do it with it? ‘It's a cup of tea’.
“After about three or four questions she was just saying ‘it's a cup of tea’ I could see she was getting frustrated because she knew there was something more but she couldn't tell us what it was.
“The way she's talking now is a lot better than 12 months ago. Some days are better than others.”
Since moving to Seaham with her parents early in 2017, going through the intensive nine-week HBIS program, being formally diagnosed with aphasia, and continuing with occupational and physiotherapy, Emma’s recovery has progressed to the point where she has been licensed to drive again and has begun speaking about aphasia to community groups and schools, to spread awareness about the condition.
But Emma said this has all been possible through the support of the Aphasia Communication Group based in Maitland.
She found the group late in 2017, and said it is “the best thing that’s ever happened to me”.
“Everyone in the group has aphasia. Their carers, mums and dads, parents, they all understand. It’s absolutely brilliant,” she said.
Mrs Beesley said she, as Emma’s support, also gets a lot out of being part of the group.
“When we found out about this group at the end of last year it was just a godsend,” she said.
“We were conscious of the fact that [Emma] needed social contact, needed to make friends but it was really hard for her to go into a normal group situation because of her communication problems.
“Even though friends did come visit from time to time, she still felt awkward. She'd tried going to a stroke group in Newcastle but they were mostly older people and a lot of them didn't have aphasia.
“When we heard about this group we went to their Christmas party. It was amazing. We both felt so welcome, everyone was lovely. I got a lot of out it being a carer and Emma felt so welcome. She has just blossomed.”
The group meet at Rutherford Community Centre each Friday between February and November from 10am.
Now that she has ticked off a big step in her recovery – obtaining her license, and independence – Emma’s next goal is to speak at the Australian Aphasia Association’s national conference in November.
She also hopes to return to work with the family court at some stage.
“I loved it there,” Emma said of her job. “I don't want to work anywhere else. I know it’s tricky. But, watch this space.”
- National Stroke Week runs September 3-9. This year, Stroke Foundation is encouraging Australians to do their part to prevent stroke by adopting healthy habits into their lifestyles.