I will not let Aphasia stop me

By Terri (and Elise)

My name is Terri, and I live in Central Australia. I have had four strokes in four years due to an underlying disease called Cerebral Amyloid Angiopathy (CAA).

The strokes started when I had just turned 50 years old. What a way to bring in your 50s.

I have aphasia, which really limits my communication, so my Speech Pathologist, Elise, is helping me to share my story.

I was a very busy woman when my strokes started, and the stress that I was under contributed to my high blood pressure. I had been a primary school teacher, and then a beauty therapist, and am a mother to my beautiful daughter, Charli.

Scarily, all my strokes happened in the month of November, and at night, when I was in bed. The headaches would start, and I would be paralysed in my bed. It was terrifying.

Following the first stroke, I was able to resume most activities in my life, and I was back at work within a fortnight. But the subsequent strokes have left me with increasingly challenging deficits.

The following November, not my favourite month, I had my second stroke and again mainly resumed my life.

The third one was a big stroke. After this one, I couldn’t walk, talk, or work. I woke up in an Adelaide hospital with my memory nearly erased. I had to start again.

My last stroke was in November 2021.

I still can’t speak or do maths. I walk with a cane. My right side is immobile, including my arm and hand.
The strokes completely upended my life. I had been a primary school teacher, and then a beauty therapist, and am a mother to my beautiful daughter. I loved my work, and I planned to travel.

Stroke (and aphasia) are dream crushers.

Not being able to speak fluently, or find my words, has taken a big toll on my mental health. I think I could handle hemiplegia but taking away my speech – it's cruel and isolating.

I can understand everything, I just can’t express myself with words, and my writing is limited.

Truthfully, my speech is the hardest thing that I have ever worked for. I do lots of talking, reading, spelling, and writing practice. Most of my speech therapy is through telehealth, as there is limited support in Alice Springs. If it wasn’t for telehealth, I don’t know where I would be.

My goal is to travel to Darwin to visit my brother, and Queensland to see my daughter. Then the stretch goal is to travel to Bali.

I want my retirement to be a rich experience and I won’t let aphasia take that away from me.

From Elise (Terri’s Speech Pathologist)

I’ve gotten to know Terri over the last year, and it’s opened my eyes to the reality of the life of a survivor of stroke.

I can’t imagine what it would be like not being able to speak my mind. Seeing the pain and frustration aphasia has caused Terri has been tough. I wish there was more that I could do.

Along with the laughs, there are lots of tears. Terri is one of the strongest women I know. She shows up every Wednesday and Friday for our zoom sessions, without fail.

Terri is so determined, and despite the devastation aphasia and stroke has caused in her life, she is still motivated to live a very full life.

What I’ve learnt is that stroke can be absolutely devastating, and it is not something you can go through alone. Connecting with other survivors of stroke, people living with aphasia, and family and friends is so important.