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.
Sarah’s mom: I think I’d also say, for a young person with aphasia I think it’s very difficult socially because they can lose a lot of friendships or dynamics within the family can change. It’s not just the loss of speech or the aphasia, but I think it’s lots of other things surrounding that. So try and give your loved one lots of support, try to structure each day so you’ve got things to do and you’re not just watching TV. Try and really be patient and give them lots of space. Don’t try and finish their sentences; I can say that because I did that myself, I’m sure we both did, but try not to do that because it doesn’t help. Try and give them time to process their thoughts and express themselves because it’s really important they’re still a person with their own beliefs and opinions, so don’t lose sight of that, they’re still the same person inside. So don’t let the aphasia sort of dominate the whole, sort of, family life and relationships.
Sarah’s dad: I would say as well, don’t wrap them up in cotton wool because it’s very easy particularly as a parent to want to protect Sarah, or your own child, and not to expose them to that big bad world outside. They have to push the boundaries in order to progress so there’s been times when, you know, we haven’t wanted Sarah to go on a train on her own because we we’d worry if something happened, if the train got cancelled or whatever. Now we’re gradually becoming more and more confident in letting Sarah do new things, but I think it’s important to give them the space and the opportunity to push the boundaries and to stretch themselves. They may have the odd little accident on the way, but I think it’s a price worth paying to get them to the point where they can take on new challenges and move forward.