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When Russ started having trouble with his vision, he put it down to his optical prescription and was initially misdiagnosed. Russ says he still hates the day they told him he had dementia. Find out how he changed his outlook.
Please be aware that this story may be distressing for some readers, if you need support please call the National Dementia Helpline on 1800 100 500.
It snuck up on me. I was having trouble doing simple things like pouring a cup of coffee because I couldn’t quite get it in the cup. Pouring wine in a wine glass was becoming awfully difficult because I couldn't find the boundaries of the wine glass seeing as they’re clear and I thought this is really weird.
I put it down to my optical prescription obviously not being right anymore, I’d worn my glasses for a few years, and my eyes just must be deteriorating.
I didn’t do anything about it, then my wife and I went overseas to South Africa on safari for a month and I had all the trouble in the world at night-time because lighting was dim rather than brightly lit. I was tripping over things and tripping up and down stairs. I thought the first thing I do when I get home is get my eyes tested.
So I went to a different optometrist, and he said no you’ve got the right script and I thought that doesn’t sound too good. I went to the GP, who started a whole range of tests looking for strokes, aneurisms, and doing a range of different tests like MRIs, CT scans - all kinds of things trying to work out what was going on and there was really nothing there so my GP asked me to see a neurologist in town which I did.
I did some blood tests and found that I had low vitamin B12 which can cause issues with memory and vision, so I thought you beauty, I’ll take some vitamins. I did that for six months, and then met with my doctor and said it’s not getting any better; in fact I think it’s getting a little bit worse. I went through more tests including a spinal tap.
I still hate the day they told me – he said you’ve ‘got Alzheimer’s, come back in a year’.
I was pretty down and suicidal for a couple of months because I didn’t want it and I couldn’t see a purpose because there was nothing given to me; you’ve got it, go away and come back. It was brutal. It lacked all the information you need on how to live with dementia.
I’ve had an academic life, and I had done some research about dementia. My memory wasn’t the problem – I was learning French at the time. It was this visual thing, I just kept tripping over and knocking things down, and to me that wasn’t Alzheimer’s. I couldn't understand it so I got a referral to another neurologist.
During the time it took to get in to see the new neurologist I researched online anything and everything about dementia. I said to my wife, I think I’ve got posterior cortical atrophy (PCA) – look at this and she said ‘that’s you’.
The neurologist confirmed it and it all made sense after that. I knew what I had. I guess I’m like most people; people think about dementia as one problem – there’s over 100 forms of dementia so you see some people in the street with dementia, but you might not see anyone like me in town, so it made sense.
On the day I got the diagnosis there was a social worker there who sat us down and went through all the services I could access and the next steps.
It was very positive from that day on compared to my first diagnosis – you know, you’ve got Alzheimer’s go home and come back next year – and it made a big difference. On a personal level, I was really depressed for about three months not knowing what was going on.
The realisation of what I had gave me a better perspective of what was going to happen, how it would manifest over time but more importantly about what else I could do and continue to do, and that made a big difference to my life.
When I got the PCA diagnosis I was still a bit down, I’ve always said I wouldn’t want to have dementia, but then I got some counselling from Dementia Australia, and the best thing I did was the living with dementia course. It changed my life and I think it changed my wife’s life too because we were talking to people who had dementia, people who knew what was going on, where the information was, what you could do, and it made it very positive - and it’s been very positive ever since.
It’s a case of understanding what your dementia is and how you’re going to manage it – that’s the most important thing to find out.
We thank Russ for sharing his story. If you’ve noticed changes in yourself or someone you know, or are feeling uncertain or anxious about what’s happening, please call us on 1800 100 500.
Posterior cortical atrophy is a rare form of dementia which affects the processing of visual information, and can be evident through difficulties with spatial awareness, depth perception, recognition of objects as well as literacy, numeracy, speech difficulties and cognitive decline.
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