Focus on stroke: My story – Claire

Claire O'Kane

Claire O’Kane was just 26 years old when she had a stroke.

She and her mum, Ann, talk about their experiences, six years on. As told to Penny Bailey.

Claire: I was 26 when I had my stroke. I had always felt there was something in my head that shouldn’t be there, but I didn’t know what it was. I thought it may be a brain tumour. I kept looking in the mirror to see if my eyes had dilated, because I worked as a carer for old people so I knew that was a sign something was wrong with the brain.

Ann: I’d ask what was wrong, if she felt bad or had any pain and she’d say no. You can’t go to the doctor’s when there’s no sign anything is wrong with you. I thought it was just Claire being a worrier. But she kept saying something was there, for years and years.

Claire: The day it happened we were going to have a barbecue with my two-year-old daughter, Caitlin. I noticed I couldn’t see properly and thought it must be a migraine, but when I tried to take some tablets to get rid of it I couldn’t swallow them, so I got my mum. I sat down and my arm went dead. When I couldn’t get my arm or leg to work I started panicking.

Ann: I knew something was wrong. Claire flopped down and her right arm just dropped to the floor, and she was just talking garbage, not making any sense. I rang her sister, Paula, who lives down the street. She came and saw that Claire’s eyes were dilated, so we called an ambulance immediately.

By the time we got to the hospital, Claire was in a coma and they’d put her on a life-support machine and sent us to another room. A nurse came in and told us she had bleeding in her brain. Carol, my sister, asked if they would operate. The nurse said, “Oh no, normally they don’t operate with a bleed on the brain, the person just dies.” All Claire’s relatives in the room started to cry – except for me, I was in shock. A couple of hours later a surgeon came in and said he was going to operate. Carol asked if Claire would live and he said, “Of course she will, but we’ll see what we’re dealing with at the end of it.” I could have kissed him.

After the operation he explained that Claire had had an abnormal blood vessel on the brain – she was born with it – and the surgery had saved her life. He gave me hope again because he said, “The girl you’ve got in that bed now will be a very different girl in two years.” They took her off the ventilator a day later, but she was in a coma for ten days.

Claire: I spent a month in the high-dependency unit, then two months in the stroke unit. All the other people there were in their 80s. I wanted to be with my daughter so I went home during the days and went back to the stroke unit at night. I got physio on the stroke unit to learn to walk again. They put a little machine on my legs that stimulated the muscles so I could lift my foot up and down. I had speech therapy because I couldn’t talk. Then somebody told me to sing, and I could, straightaway.

Ann: She sang five words of ‘Angels’ very well. We were all crying.

Claire: I wasn’t. Singing is controlled by a different part of the brain from talking so it’s easier after a stroke. It’s the same with swearing. That was easier because it’s controlled by another part of the brain too.

Ann: She got very good at swearing! Talking was harder. She would think she was talking properly but all that came out of Claire for the first six weeks or so was ‘oh’. And if you didn’t understand what that ‘oh’ meant, Claire got frustrated, then she would swear at you. Eventually she would get the right word.

Claire: I thought I was saying the right word. And I was thinking, why don’t you understand, are you thick or something? It was worse for my family than it was for me. I was quite happy, away in Claireland! [laughs]

Ann: Since the stroke, Claire’s personality has altered. She she’s always been a family girl, very loving, but she was very quick-tempered, and she was always a right worrier. But since the stroke she’s been quite laid-back, she doesn’t worry like she used to and will laugh at anything,

Claire: Once I’d come round, the doctors automatically put me on antidepressants, but as soon as I came out I got rid of them. I didn’t think I needed them. I can’t remember not having a stroke now, it’s been six years.

Ann: Claire has gradually got better and better and better. I marvel at her sometimes. When she left hospital she could only walk about two steps, and four adults needed to help her get upstairs to get to bed. She refused to sleep downstairs. Now she can go upstairs on her own, or just with me one step behind her. She still needs support, she can get stuck with words a lot. She swears a lot. She has to remember not to lean too far over to the right – the stroke affected her right side – or she’ll topple over.

Claire: I’ve got a limp, but I can walk. I can’t run. But I couldn’t anyway. [laughs] Some feeling in my leg is gone. If I closed my eyes and you touched my leg, I couldn’t say which one you’d touched.

Ann: She still can’t hold anything at all in her right hand, unless she’s got SaeboReach on. That’s like a glove that fits on her hand. When she’s got it on, she can open her hand, pick up and release. It’s absolutely amazing to see. She used to have to have Botox in the hand to relax the muscles so her hand wouldn’t be in a claw. But since the SaeboReach she hasn’t needed the Botox.

She does some cooking. She makes lasagne, and Caitlin helps her. I usually cook the veg and so on. She’s bought herself a chopping machine because her mother doesn’t cook the veg right. [they laugh]

She can push a trolley with both hands now and hold her daughter’s hand. That’s apart from when she goes to hospital – she gets white-coat syndrome. And her hand tightens up when she sees a doctor.

Claire: I’m not bothered about going to the hospital, but my hand always curls into a claw when I see a doctor. As soon as I get outside it’s alright. [laughs]

Watch a BBC News video on Claire’s experience with Botox and more about her story in this video from the Stroke Association.

For more information on stroke, visit the Stroke Association’s site or call its helpline on 0303 303 3100. If you or someone with you is suspected of having a stroke, call the emergency services immediately.

Image credit: Stroke Association