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January nineteenth. Nothing good ever happened on that day.
she read through the Activities of Daily Living questionnaire that Dr. Davis had told her to give to John. This should be filled out by an informant, NOT the patient
She scanned down the descriptions next to the 3s and assumed they represented the end stages of this disease,
the end of this straight and short road that she’d been suddenly forced onto in a car with no brakes and no steering.
Number 3 was a humiliating list: Must be fed most foods. Has no control over bowel or bladder. Must be given medication by others. Resists efforts of caretaker to clean or groom. No longer works. Home or hospital bound....
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The worst
the heading “Communications.” Speech is almost unintelligible. Does not understand what people are saying. Has given up reading. Never writes. No more language.
She thought about the books she’d always wanted to read, the ones adorning the top shelf in her bedroom, the ones she figured she’d have time for later. Moby-Dick.
Everything she did and loved, everything she was, required language.
the brains of Alzheimer’s patients had reduced levels of acetylcholine, a neurotransmitter important in learning and memory.
the hippocampus, a sea-horse-shaped structure in the brain critical for the formation of new memories, became mired in plaques and tangles,
anomia, a pathological tip of the tongue, was another hallmark symptom.
Her crying, explosive and anguished,
“Ali, are you okay?” I’m not okay, John. I have Alzheimer’s disease. She almost thought she’d said the words aloud, but she hadn’t.
She’d rather die than tell him.
“Who told you this?” asked John.
“Dr. Davis, he’s a neurologist at Mass General.” “A neurologist. When?” “Ten days ago.”
“He’s wrong, Ali.”
“He’s not.” “There’s nothing wrong with you.”
“Yes, there is. I’ve been forgett...
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She was asking him to believe in a single conversation what she had denied for months.
completely forgot about the conference altogether,
“I forget words.
“I didn’t make the pudding on Christmas Eve because
I couldn’t remember a single step of the recipe.
had absolutely no idea how to get home.
“When was this?” “September.”
“I need to do some reading, and then I want to talk to your neurologist.”
Without looking at her, he got up and went straight into the study, leaving her alone on the couch, hugging her knees, feeling like she needed to throw up.
Genetic counselor appointment (John has info)
Stephanie Aaron was the genetic counselor affiliated with Mass General Hospital’s Memory Disorders Unit.
“My wife was recently told she has Alzheimer’s disease, and we want her screened for the APP, PS1, and PS2 mutations.” John had done his homework. He’d spent the last several weeks
“Are you concerned that your diagnosis might be inaccurate?” “We think it’s a real possibility,” said John.
About fifty percent of people with early-onset Alzheimer’s don’t show a mutation in any of these three genes.
“Isn’t that number more like ten percent for someone her age?” asked John.
a bit more skewed for someone her age,
“My mother was perfectly fine. My father was a lifelong alcoholic.
I don’t think he recognized me at all for the last several years.” “Was he ever brought in to see a neurologist?” “No. I’d assumed it was the drinking.”
“Around his early fifties.”
I think you jumped the gun going to see a neurologist. He looks at your set of symptoms and sees Alzheimer’s, but that’s what he’s trained to see,
“I think you’re exhausted and stressed,
hormonal
meno...
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depre...
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He sounded...
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she didn’t push back on her diagnosis harder,
even the suggestion of this doomed fate.
wasn’t characteristi...
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“I’m sorry to tell you, Alice, you’re positive for the PS1 mutation.”
She could go on a cocktail of estrogen replacement, Xanax, and Prozac and spend the next six months sleeping twelve hours a day at Canyon Ranch, and it wouldn’t change a thing.