Thank you for raising awareness of this rare disease
I READ Valerie Blumenthal’s article (Inspire) about her alzheimer’s diagnosis with great interest, relief and, frankly, sadness. my husband was diagnosed with the same type, posterior cortical atrophy (PCA), in January 2016. He had previously been diagnosed with mild cognitive impairment and depression, followed by early onset dementia in 2013. Neil will turn 60 next week. PCA is one of the rarer forms of dementia. I’d never heard of it until his diagnosis, and it has been a very steep learning curve for us both since then. Neil’s diagnosis was due, in no small part, to a very switched on occupational therapist. There isn’t a great deal of awareness about PCA, or support as many sufferers are relatively young. In our experience, help is targeted at older people — although I’ve told Neil that in a few years’ time, people in care homes will no longer be listening to Vera Lynn but will be blasting out AC/DC. So much of Valerie’s story can apply to Neil; the difficulties with his vision, not being able to see objects or obstacles straight away (I can’t tell you how many times he has walked into bollards or warning signs for wet floors, etc.); no longer being able to read, write or drive; his spacial awareness, balance and coordination have all but vanished; he can no longer manage cash and relies heavily on the honesty of shop assistants not to shortchange him. The list gets longer every day. I’ve had to give up work to become his carer, although he can still be left for an afternoon, as long as I plan carefully for it. Spontaneity has gone from my life. PCA has had an enormous effect on us both, and it’s not done with us yet. It meant so much for me to read Valerie’s story. I think she is very courageous to write about her own experience, not least because it must have taken a huge deal of time and effort to do so. I feel for her husband Chris, too. Being the carer for someone with PCA can be very isolating as well as taxing. I’ve had to become Neil’s advocate and defender, as some people can be very unkind and intolerant, although the people in our village, his friends and family have all been tremendous and help him to retain his independence. It sounds as though Valerie is doing everything she can to remain positive and independent despite all her difficulties. Long may she remain so. Thank you to her and the mail for publishing this account of such a rare illness, and telling the wider world that PCA exists and the effect it has on individuals.