Have you listened to the BBC Sounds series called Dementia: Unexpected Stories of the Mind? Episode 4 in the series features a woman called Susan who has a rare neurodegenerative condition called posterior cortical atrophy (PCA).
The episode gives a good understanding of what the condition is, what the symptoms are, and what it is like to live with it. Sue describes herself as “a bit wobbly” and explains, when trying to pick up a cup of tea; “It is sometimes difficult to find the handle, I sometimes go round and round and round, and I do it by feel really, because I can’t necessarily see where the handle is.” She initially had a problem judging distances when driving and knew there was something wrong, but it took about two years for her to get a confirmed diagnosis of PCA.
When someone has PCA, although it seems that though a patient might have a problem with their eyes, the programme’s presenter, Jules Montague, describes it as “not eye sight loss, but brain sight loss”.
Dr Paramdeep Bilkhu MCOptom, Clinical Adviser at the College explains more about PCA; “Posterior cortical atrophy is a neurodegenerative condition that causes progressive decline in visual processing and perception. This podcast gives a great insight into the lived experience of the condition.
“As Susan explains in the podcast, it can result in unusual visual experiences, such as finding it easier to read smaller fonts than larger ones. It can be difficult to diagnose, as Susan mentions too, and unfortunately, this experience is often slow.
“Your optometrist will help you if you are having issues with your vision or eye health and are concerned that you share some of the symptoms described by Susan. While your optometrist may not be in a position to diagnose PCA, if they suspect it, they will be able to refer you for further investigation.”