Patient videos

Living with PCA – Trina and Graeme’s story

Trina and Graeme had always led busy and active lives. Trina making daily trips into central London for her job as an assistant general secretary at an actors’ charity. However following Trina’s retirement in 2006 she started to notice problems with her vision: she struggled with facial recognition and it was clear there was a problem when she was unable to identify playing card suits during a game with friends. Further symptoms led the couple to seek medical advice in 2008.

Doctors initially thought she had had a stroke, however after Trina deteriorated further, no longer being able to drive and struggling with reading and balance, further tests revealed that she had posterior cortical atrophy (PCA). This diagnosis came in 2012, four years after she initially visited the doctor and six since she started having problems with her vision.

PCA is caused by damage to the brain cells at the back of the brain that make sense of what our eyes are seeing. It typically affects people between the ages of 50 and 65. Trina was 66 when she was diagnosed though symptoms were clearly there years before. Over time Trina and Graeme have had to learn how to adapt their lifestyle as her condition has deteriorated. This has had a huge impact on their lives, their retirement and most significantly their connection with each other and the outside world.

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