Sarah’s mom: Sara’s twenty-four now. She was 18 when she had a stroke at school, and just about to go to University so it was really a life-changing event that came completely out of the blue.
Sarah’s dad: It put Sarah’s life on hold. She had a place at University. We held that back for a while, but that’s still some way off now, isn’t it. I guess Sarah’s speech initially was very limited. We worked on that with speech therapists in the UK, which gradually brought that onto the level it is now. Her reading and writing has suffered, and prior to this intensive program it was very, very limited.
Sarah’s mom: She couldn’t swallow, she was paralyzed, couldn’t walk, couldn’t speak at all - she had no speech. And then gradually, “yes” and “no” and naming things – that kind of came back. She got her walking back and her swallowing, so she looked normal and the thing that she had that remained was aphasia. Which was actually very disabling. I don’t think people realize how difficult aphasia is. It’s made her life very difficult particularly not being able to work with numbers, going back to work, and that kind of thing is really, really hard without being able to understand numbers.
Sarah’s dad:Sarah found it very difficult to see that she was improving. I think even as parents when you’re with Sarah everyday sometimes it’s hard to see the changes day to day, but what we could see is some of the family and friends that didn’t see Sarah as frequently they could see the step improvements. I think the videos were one way of actually showing Sarah and demonstrating to her that she is making more progress than perhaps sometimes she could see herself. I think that was the initial motivation to do this.
Dr. Lori: What advice would you have for other caregivers or families with aphasia?
Sarah’s dad: The first thing we’d say is, some of the messages you can get from the healthcare professionals can, like initially for Sarah: they told us that Sarah would plateau in her recovery after 6 months. I think if anyone’s seen Sarah’s videos they’ll see that’s absolute rubbish, and we know almost everybody that we come across who’s had aphasia they all continue improving. So if anyone tells you that your improvement will plateau, please ignore it because that’s not true. I think people, no matter what their age, they will continue improving if they keep working at it. That’s one of the most important things for people to feel that there’s hope and it’s worthwhile, keep working at your speech or your language because it will continue improving if you work at it.