Martin’s story – Living with Posterior Cortical Atrophy (PCA)

Every night when I let the dog out, I see two moons, and sometimes think I live on a different planet.

I have a very rare type of dementia called PCA. Terry Pratchett had it. It starts at the back of the brain which controls your senses. It is sometimes called “Brain Blindness”.

Getting the right diagnosis was difficult, but important

I was first misdiagnosed, and had loads of tests, including six lumbar punctures in half an hour; I felt every one because I have scoliosis. We then returned to Scotland and my GP sent me to see an Old Age Psychiatrist. When I went I said I am not old and not psychotic. He soon realised I was misdiagnosed and sent me to the neurologist. After many more tests, he said there’s one more to try, I stamped my feet like a little kid and said no. Fortunately my wife persuaded me to have yet another lumbar puncture; this showed my Tau (proteins in the brain) was massively raised and with my symptoms the Neurologist said PCA, and sent me away. The original consultant could only find the Wikipedia page for PCA, so sent me back to the Neurologist. On the Montreal Test, I still get 26/30, so research needs to be conducted on more appropriate methods.

How PCA affects me

My eyes are physically fine, but my vision is terrible, for instance I can’t read text on the TV. I am registered “Visually impaired”, I tried with a Guide Dog. Dollar and I were a great team but my wife was allergic to his hair as he is a Golden Retriever, the Guide Dogs are looking for a less hairy breed.

When I’m in a car, I have to close my eyes as there is too much information coming towards me.

When I read, which I do a lot, my ears subconsciously shut down, I didn’t realise this until my wife started shouting at me thinking I was deaf. This ability allows me to read heavy academic papers. If my senses get overstimulated, my whole brain shuts down and I have to go and lie down in a quiet dark room.

Early diagnosis is the key to making the most of my life

I was diagnosed seven years ago, aged 58. I was told within five years I would be in care but I am not. My IQ was tested late last year and it is still 120. Once the neurologist got over the shock, we both think it is because I do so much meaningful research. I see him every six months as my other symptoms (senses, emotions and physical) are a lot worse, but I can tell him what is happening as my cognitive reserve is so high.

I miss travelling as the senses get overwhelmed and I tire easily. Also my emotions are very erratic. Otherwise, I don’t really mind having dementia. Getting an early diagnosis is key as it enables you to make the most of your life. I never felt bad about it, I came out of the consultation with what I went in, and it enabled me to give up work and do what I want, when and if. I had to stop driving ,but I knew my driving was erratic and I was secretly glad as I could not have coped if I had caused an accident.

I am often asked if I would rather not have dementia; this is very hard to answer. The key is that I was diagnosed early enough so that I still have a fulfilling life.

Find out more about Posterior Cortical Atrophy on the Alzheimer’s Society website.

For hints and tips on adapting to your dementia diagnosis read this article.

Read this article for advice on making decisions about driving.