Tapati (tapati) wrote,

A Disease of Quiet Desperation

Terry Pratchett: I'm slipping away a bit at a time... and all I can do is watch it happen

Diagnosed with Alzheimer's--specifically posterior cortical atrophy--author Terry Pratchett writes:

It was my typing and spelling that convinced me the diagnosis was right. They had gone haywire. Other problems I put down to my looming 60th birthday.

I thought no one else had noticed the fumbling with seat belts and the several attempts to get clothing on properly, but my wife and PA were worrying. We still have the occasional Clapham Junction days, now understood and dealt with.

I have written 47 novels in the past 25 years, but now I have to check the spelling of even quite simple words - they just blank on me at random.

He also points out that for a disease that is so feared, research is still chronically under-funded. As the baby boomers age we're going to have an epidemic on our hands.

I've written before about my own memory and attention problems, growing worse every day. They might have another cause but I can empathize with Mr. Pratchett as he watches in shock as words emerge from his typing in garbled form, a skill he once practiced almost effortlessly gradually deteriorating. I, too, grope for the spelling of words I have known for 40 years or more and depend on spelling programs to alert me to misspellings or help me find the correct one. Thank Goddess for Google and the online dictionaries!

It's positively terrifying. (Right there I stumbled over terrifying. Just stopped mid-word, confused about how to proceed.)

The aphasia is getting worse and worse. I grope for names of shows I regularly watch, names of characters, actors, I back up Tivo to see the weather three or four times because I lose my focus and don't take in what I was just watching, I describe household objects to my husband because I forget the names of them. Alternately, other words, nonsensical words at the time, jump forward in their place and tumble out of my mouth, leaving both of us confused. I do this not just once in awhile, as I did 2 or 3 years ago, but on a daily basis now. I leave the stove on so often that I worry I might burn the house down.

Pratchett writes:

When in Paradise Lost Milton’s Satan stood in the pit of hell and raged at heaven, he was merely a trifle miffed compared to how I felt that day. I felt totally alone, with the world receding from me in every direction and you could have used my anger to weld steel.

I am angry too, but perhaps it is a gender-based difference that my fear is much stronger than my anger. It is not considered socially appropriate for a grown man to say to the world: I am terrified. And when you are losing your mind, bit by bit, pride may be all you have left.
Tags: bio, brain, health, memory, mental health, pride

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