Toni speaks of her stroke, which has left her with debilitating sensory overload

Toni speaks openly about her stroke which left her with left side neglect, cognitive changes and sensory overload. While Toni can no longer read books, drive…

Some of the topics discussed will get you thinking about your own experiences. If you feel any distress, talk with someone you trust—perhaps a family member, friend, or your doctor. If you need support, information or advice StrokeLine’s health professionals are available 9am to 5pm, Monday to Friday, AEST. Call StrokeLine on 1800 787 653 or email strokeline@strokefoundation.org.au. Lifeline is available 24 hours a day on 13 11 44.

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Video transcript

Toni: My name’s Toni. I had a stroke in 2013. That was my major stroke that I had then, and since then I’ve had three TIAs. Back then I was a primary school teacher, mum of three kids, or adult-ish kids at that stage.

When I had my stroke, we didn’t know that I’d had my stroke. I just didn’t feel right, I also felt a bit off-colour, I didn’t have any of the F.A.S.T. symptoms. When I started feeling unwell and stuff was on the Wednesday. So I didn’t go to the doctors until the Monday. And so then I was sent for an MRI and CT scan. And on the Wednesday I was told that I’d actually had a stroke.

So I was never admitted to hospital, never went to any sort of rehab, it was all just recovery at home, because I could walk and talk.

Like I only had a little bit of left-sided weakness. And then it was more about, as I tried to do things, that I discovered that, “Hang on this isn’t right.” And when I say try to do things, it was more the cognitive types of things. So whether it was forgetting how to knit, or not being able to add up or spell things properly, they were all things I discovered along the way.

A big thing for me is that I suffer from sensory overload. So I know that at the moment, people don’t think that I’ve had a stroke, but I go from being like this, and then I actually lose the ability to walk and talk properly at the extreme end, I suppose. It’s like, if we go on a holiday, and we have to fly, I have to go in a wheelchair. I cannot walk off the plane because I’ve totally lost that ability.

Going to the shops for shopping, I… Part of that sensory overload, you know after about an hour or so, the lights, and people, and music, and everything, all interacts with me and so I get my left-side neglect. So not aware of my left-hand side. I start losing the vision in my eyes. So I bumped into things because I’ve just… I’m not aware that they are there. I’ve been assessed as never able to work because of the effects of that sensory overload and how severe it can get.

I don’t drive because obviously, you know I might be fine now to drive somewhere, but once that kicks in, there’s no way I’d be safe to drive back home.

I actually have no known cause for my stroke. We talk about the risk factors of stroke. And the only risk factor I had was actually being overweight. You know, I’ve got low blood pressure, low cholesterol, so all of those things that you sort of think would be there.

People comment on my resilience. And I suppose for me, I don’t see it as being my resilience. It’s always been me. Like I’ve always been, I suppose, looking for the positives in everything.

And, you know, I can take from my stroke that I know that things could have been a lot different situation for me, but I know my limitations. I can’t read anymore. That’s been a big thing. So I can read like newspaper articles, but I can’t actually read books or novels because I can’t follow storylines, can’t remember who all the characters are.

Decision-making is…That can be…I always bring it back to one day and my husband and were up at Coles, grocery shopping. And I just couldn’t work out whether I should buy bacon or not for breakfast. And I ended up in tears, because I couldn’t decide whether to buy that bacon or not, which, you know, is a bit stupid, but…

That’s what I do, and those things happen, you know? And again, it’s one of those… It’s the unpredictability. You don’t know when that emotional response is going to kick in. So I work within what I know I can do.

For me, the real big positive out of having a stroke was that I was able to reconnect back with drawing. So growing up, I used to always have my coloured pencils out, drawing the birds and things that were around, and I’d love to be able to have my own exhibition one day.

Make sure that you keep time to do something you enjoy. You know, not everything has to be solely rehab focused, try and find something in there where you find time for you, because you don’t want to lose you.