Her sight, Our vision
‘Sorry I missed your call, I’ve not been able to stop being sick for the past hour. My parents are here. You’re going to have to come home.’ That was the voice note that changed our lives at around 6.30pm at the end of February this year. I was 250 miles away with work when my partner sent me that voice note just as I reached my hotel for the night.
No sooner had I put my bags down, I picked them back up, checked out and drove at speeds that were probably not sensible to ensure that I was home for my partner and our son. When I got there later that night the ambulance had not arrived and my partner was in our bedroom on the floor having decided that was the most comfortable place for her to rest, and having refused to be picked up onto the bed or conveyed to hospital by her parents. She told us then that she was struggling to see. BEFAST isn’t something that is currently well known in the UK. We all know the FAST symptoms but not BE so we assumed she either had norovirus, meningitis or a very bad migraine - something she frequently has. The ambulance arrived shortly after me and they came to the same conclusion. They believed that she had meningitis. We all did and she was conveyed to hospital on that basis.
The fact that I am writing this blog for the Stroke Foundation of Australia tells you we were wrong. My partner did not have meningitis. She experienced a stroke. In a matter of hours our lives changed. The fact that she was unable to see was down to the stroke impacting the visual part of her brain leaving her with significant vision loss. It is still very early days so we hope that in time her vision will return. I am deliberately not naming my partner. She had the stroke, not me, so it is her story to tell when she is ready to tell it.
A new world has been opened to us in our 30s. In my mind, strokes were something that happened to people in their later years - my nan had one when she died in her 80s - so my partners stroke has come as a huge shock to us all. Especially as she is super fit and my knees click when standing up. One of the areas that we’ve learnt about is visual field training - which is to help people with visual field loss ‘retrain’ their vision to look in the areas they’re now unable to see. What we found online was either not working, very basic or very expensive. They were also all only in English or one other language. This was a huge gap and felt unfair to me. We needed an alternative and if we needed an alternative others did too. So I created one with Stroke Sight - an app that is specifically designed for stroke survivors to support daily visual field training practice alongside professional care.
Grounded in academic evidence and in line with NICE guidance I made the app for people living with hemianopia, quadrantanopia, visual neglect and scotoma. The exercises target the most common consequences of visual and attentional changes following a stroke: the loss of part of the visual field, reduced awareness of one side of space and blind spots within the remaining field. The approaches are supported by clinical evidence.
What has shocked me the most whilst looking for anything and everything that will help my partner is the lack of resources that are available for people whose first language isn’t English. I remembered attending a seminar by the Stroke Association in the UK very early on in my career where they mentioned that following a stroke people with two languages often revert to their first language - something which is a big issue in parts of rural Wales where I’m from. To counter this I have made sure that the app is available in 17 languages to fill that gap and provide help to those who need it when they need it.
It is often said that a crisis reminds you of the kindness of others and I’ve been astounded by the kindness of strangers over the last few months and especially the kindness I’ve received from within the stroke community as the partner of a stroke survivor. The fact that I am able to write this blog on EnableMe is a testament to that. I have a full time job, am a partner, a father and a son. I never thought I’d be writing a blog like this in a personal capacity and certainly never thought I’d ever make apps for anything, but life has a way of making you play the cards your dealt and this app is my small way of trying to make things better for others like they’re trying to make things better for us at the moment. I have more information on https://ansteyapps.com
Liam Anstey is from the United Kingdom. He has created Stroke Sight - Visual Field Trainer after a stroke impacted his family. He is also the Director for Wales at the General Pharmaceutical Council.