Terry Pratchett has long been one of my favourite authors. Last summer he was diagnosed with Posterior Cortical Atrophy, a visual variant of Alzheimer’s disease, and he writes about his experience with the diagnosis in the Daily Mail [via]:
I was extremely fortunate in my GP. I think she was amazed to find that of the two specialists in my area, one had no experience of PCA and therefore did not feel he could help me and the other would only take on patients over 65 – at 59 I was clearly too young to have Alzheimer’s.
I remember on that day of rage thinking that if I’d been diagnosed with cancer of any kind, at least there would have opened in front of me a trodden path.
There would have been specialists, examinations, there would be in short, some machinery in place.
I was not in the mood for a response that said, more or less, ‘go away and come back in six years’.
My wife said: ‘Thank goodness it isn’t a brain tumour,’ but all I could think then was: ‘I know three people who have got better after a brain tumour. I haven’t heard of anyone who’s got better from Alzheimer’s.’
He goes on to write about society’s view of the disease. People want to ignore it and think of it as just an unfortunate, unpreventable part of growing old, a view that hinders research and funding.
The stories in the report – of people being told they were too young or intelligent to have dementia; of neighbours crossing the street and friends abandoning them – are like something from a horror novel.
It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer’s you are an old fart. That’s how people see you. It makes you feel quite alone.
I have to admit, Alzheimer’s really freaks me out. I used to volunteer at an extended care hospital when I was young, and I worked with dementia patients. Thankfully no one close to me has ever been diagnosed, but I’ve always dreaded the day I’ll have to watch a family member or friend slowly lose cognitive function. The sad fact is that many of us will have to do just that if something isn’t done.
Once he saw the lack of support and funding, Pratchett donated 1 million US dollars to Alzheimer’s Research Trust, hoping to, at the very least, get people talking. This is great for the millions of other sufferers who don’t have enough money or influence to raise any awareness.
I hadn’t seen this on your blog before I posted about it. Great minds think alike.
It’s so sad – but you know, at least he’s been the fortunate position of being able to talk about and raise awareness because of his fame.
My gran had senile dementia and it was so frightening to see the way she she just disappeared into a world of her own and then just slipped away.
It’s a good article to spread around multiple places anyway, I think. More people who read it the better, I figure.
I imagine it’s a hard thing to go through for everyone involved, Vanilla. It would certainly be a great to discover a cure or be able to control it.