There’s nothing more frightening after stroke than discovering you can’t communicate.
The clock had been ticking for Amy all her life… and when her luck ran out, her words did too.
Amy didn’t know she had a life-threatening condition. So she through the pain in her head on an ordinary Friday morning was just a migraine. She lay down thinking a quick rest would get rid of the headache so she could go to work.
Instead, she had a stroke.
Robert was already driving to work himself, but when Amy called in distress he realised from her incoherent speech that something was seriously wrong.
He rushed home and called an ambulance. At the local hospital, it was clear Amy’s condition was serious and she was airlifted to a nearby hospital where scans finally declared what had been there all her life…
And arteriovenous malformation called an AVM that had caused a stroke.
Amy’s surgeon explained that she’s need surgery to remove the AVM once the swelling in her brain had gone down. Amy drifted in and out of sleep for those few days, and Robert was afraid for her future. He says, “Amy had no speech and her right side was paralysed.”
Amy’s operation was a success, but she was left with significant brain damage – she was facing a long journey to recovery and the risk of permanent disability.
She was also left with aphasia – the loss of speech.
She had no words, and no way of communicating. She soon learned to say ‘yes’ or ‘no’ but not reliably, leaving Robert to interpret for her a lot.
With support from Robert to communicate, Amy shares, “It’s just so frustrating and can be very isolating. I need Robert to help me all the time and not many people would realise that.”
Robert adds, “It has been explained to us as loss of language, not intelligence, and that is absolutely correct.”
With her life plans on hold, Amy was moved to the Hunter Brain Injury Service, where after nine months intensive rehabilitation she began to make gains. “Her walking action improved along with her speech,” says Robert. “Her mood even began to steadily improve.”
Amy agrees, “I still have a lot of improvement I think I can make – I take the attitude that if I work hard on something, I can improve. My speech is my highest priority to see improvement from.”
Despite the hard work ahead, Amy has thrown herself into advocating for other stroke survivors who suffer aphasia. She’s become a StrokeSafe speaker, presenting to groups and organisations about aphasia.
“There is a real lack of knowledge in the general community,” says Robert. Amy adds, “Following a stroke there is so much you and your carer need to know, and I would like to think I can help out.”
She continues, “Because aphasia is so isolating and it affects your confidence, it is important that your friends and family don’t forget about you. Aphasia sufferers have to get out into the community.”
Amy’s final words after a long journey to find them, “Have the confidence to do this as you are not going to get better sitting at home.”
Due to her aphasia, Amy’s quotes have been edited for the purpose of understanding.