I received confirmation that I have a diagnosis of Posterior Cortical Atrophy (PCA), from my consultant at the John Radcliffe Hospital in Oxford, in May 2019.
I suppose in some ways, I was fortunate, because I had the benefit of private medical insurance through work and was diagnosed quickly. I know that some people take years to receive a diagnosis, particularly with PCA.
One of the first things to own up to is my lifestyle. Up until my diagnosis I had drunk heavily and smoked for most of my life. Not good but I am not looking for your sympathy! I am sure this has been a major contributing factor to where I find myself today.
At this point I must mention my consultant. She has been fantastic, and given my previously mentioned lifestyle, completely non-judgemental, for which I am incredibly grateful.
The other unsung heroine in my life is my wonderful wife, Samantha, without her love and devotion, I do not think I could have carried on.
I do have good days and bad ones too, though currently mostly good, I am pleased to say. What no one, even my consultant, can tell you is how long you have got left – I hope for many years yet!
Samantha and I have also received fantastic support from Young Dementia Oxfordshire. They have helped me enormously through this journey I am on. Their support has been incredibly influential in helping me come to terms with my diagnosis and realising having a positive mental attitude to it is the most important thing to have in one’s armoury.
Now I have left work – a serious blow, which I am still coming to terms with – I occupy my time in many ways including walking, photography and Open University courses. I try to practice mindfulness each day to help with my anxiety which is something I have struggled with since my diagnosis. I also do a brain training app called Lumosity each day to keep the cogs whirring. In fact, I do not know how I ever found time to work as well!
I also get involved in as many research projects and projects that raise awareness of young onset dementia. I have been participating in webinars, creative writing projects and, more recently, a dementia film research project that is working with people diagnosed with young onset in putting together a script for a short film.
In summary, life absolutely does not end with a dementia diagnosis, if anything, it opens up more opportunities!
Edward Bushnell lives in Oxfordshire. You can follow him on Twitter @ewbushnell
Stories of people living with young onset
Read more stories of people who are living with a diagnosis of young onset dementia