"Am I about to die?"
I'm taking notes fast.
Simone's neurologist fills our future with unavoidable, unpalatable data. We stare. "It was a lobar hemorrhage." Source: Symptoms can include altered consciousness and cognition, severe headache or seizure, stiff neck and vomiting, reduced sensation and motor control, swallowing and language difficulties, and others....
Doc's voice box flutters. She tells the room; every surface hard, uninviting, easy to sterilize: "You have CAA. Cerebral Amyloid Angiopathy."
Doctor pauses. My pen pauses.
Doctor adds, armor-plating the gruesome truth: "There is no treatment. There is no cure. Memory loss is part of the evolution of the disorder."
An eternity passes in a few seconds.
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Simone asks, "How long do I have to live?"
"This is a white-matter disease. It can take years."
Source: A person with white matter disease will gradually have increasing difficulty with the ability to think. They’ll also have progressively worsening issues with balance. White matter disease is an age-related, progressive disease.
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There's the ancient rub: the truthful medical answer is "no one knows! Days? Years? Decades, possibly?" A humane answer might be: How long would you like to live, given certain considerations?
But we don't have that answer either.
Instead we have diseases without cures without end dates without treatments without help without a clue ... yet. What will save the human race afflicted with amyloid bloom, the cause of Alzheimer's as well as CAA? Honestly: the most promising line of investigation into amyloid reduction in our brains in 2021 depends on lab mice who did better when subjected to light and noise at certain frequencies. Even if it does pan out, a treatment is years off.
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"Is there anything I can do?" Simone asks. Exercise is always a good idea, doc says. Oh, shit. Sharp curve ahead.
> Since Simoney and I don't care about exercise ~ at ALL, sun-up to sun-down. We prefer wine (me) and dessert (her). We'll always choose thinking and talking over sweating and huffing (although hiking can manage both; we adore hiking, especially the part where you're done for the day).
"A healthy lifestyle helps."
> More oh shit. Same general reasons.
"If it's any comfort, the brain scan looks worse than you behave."
> Huh?
"It could take two months for this to heal."
> Is that good?
"Expect micro-bleeds."
> What? SHIT!