"To anyone who’s just been diagnosed I would say, don’t be afraid, it is a change of life but it’s not the end"

“We lived near Hull in England. I was going to a neurologist about one-sided headaches. One Monday evening after work, we had tea then my wife and I drove in. We were seen at half past six in the evening by a consultant. He took me through a test and then said, ‘I think you’ve got frontal temporal dementia, and you can’t drive anymore’. And that was it.

From that minute I stopped driving and I stopped work because I had to drive to get there. We came out the door and there was no one to help us. Luckily my wife was with me otherwise I couldn’t get home because we lived in the country.

The next morning my wife phoned the GP and asked what services are available and the GP said ‘what do you want?’. But we just didn’t know. We decided to move back to Scotland. I was sent to an older person’s psychiatrist. As I was only 59 at that point, I pointed out to him that it wasn’t a very good title. Since then they’ve actually changed the title. There are a lot of younger people with it around here.

I was sent to a neurologist. They’ve decided I have posterior cortical atrophy – a rare form of dementia. My senses get overblown easily. I find it hard to listen and speak, to do both at the same time. I use one sense at a time. I find television hard because I need to look and listen.

We used to love going on holiday, travelling to places like Iceland, but I can’t travel at all far now. We booked a holiday to Berwick-upon-Tweed, but we had to cancel that because of the way I am. When I’m traveling my eyes can’t cope with everything coming towards me. It’s too fast for my brain. My eyes are fine, it’s the brain that’s dying.

We found Aberdeen resource centre for Alzheimer’s. I do quite a lot of national research and campaigning, but I’ve pulled back because I’ve gotten a bit worse. I give talks and I am making a difference locally, it gives me a sense of purpose.

I feel that medical professionals can diagnose and medicate but we’re the experts because we live with it 24/7 and they should listen to us. To anyone who’s just been diagnosed I would say, don’t be afraid, it is a change of life but it’s not the end. You can still be of use to society.”

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