This one’s for you if you’re interested in Huntington’s disease and its effect on the patient and their family.
I love Lisa Genova. If you haven’t heard of her, I would thoroughly recommend “Still Alice”, “Left Neglect” and “Love Anthony”. She has a PhD in neuroscience and I think that puts her in a fantastic position to write novels about patients diagnosed with Alzheimer’s, Neglect, Autism and Huntington’s respectively. “Inside the O’Brien’s” explores the effect of Joe, a policeman in an Irish community in Boston, being diagnosed with Huntington’s disease. The book really makes you feel that you are on that tumultuous journey with the patient from their first symptoms through to diagnosis and on to acceptance. Huntington’s is particularly interesting to read about as it is a genetic disease with autosomal dominant inheritance which means that if one of your parents has it, each child has a 50:50 chance of also having the disease. As you can imagine, a single diagnosis can quickly grow into a family of patients, each with their own ticking time bomb. The question of whether or not you would want to be tested for the disease if one of your parents tested positive is one that seems impossible to answer. As a fan of yoga, I liked how yoga gave one of the characters strength to deal with this tragic situation. If you’d like to learn more about Huntington’s, or to donate to a charity which helps those having to deal with it here are a couple of links: http://www.hdscotland.org , http://hda.org.uk.
“If you bring forth what is within you, what you bring forth will save you. If you do not bring forth what is within you, what you do not bring forth will destroy you” The Gospel of Thomas, saying 70. Epigraph
“People didn’t have to involve their parents back then. Kids feared their parents more than they did the authorities.” p12
“So it’s all temporary from the start, and they don’t care about where they live as much as people do when they know they’re staying until they get put in a box.” p13
“People don’t forget anything, and who you’re from is as important as who you are.” p17
“Huntington’s destroyed her ability to walk and feed herself. It mutilated her good mood, her patience and reasoning. It strangled her voice and her smile. It stole her family and her dignity, and then it killed her.” p101
“She’d like to talk about JJ being HD positive, how she thinks of him differently now, as if he’s someone who’s already sick or damaged or even contagious, how she’s kind of afraid of him, which is ridiculous, but she can’t help it.” p153/4
“His fingers are flinching, playing Mozart on an invisible flute over the buttons of his uniform shirt, ignoring Joe’s commands, refusing to cooperate.” p201
“It was the humane thing to do. Joe takes note of the word human in humane, and yet that kind of “human” compassion is reserved only for animals, not for people.” p268 The context of this quote was their dog being put down.
The unfortunate pros/cons that come with so many modern medications: “So let’s give people facing a brutal terminal illness who probably already exhibit depression a drug that can exacerbate that depression and cause suicidal ideation. That’s a great f*****’ idea. But if Joe wants to treat his chorea, and he does, Tetrabenzine is the best and only thing they’ve got.” p285
“You can be in Downward Dog, hating every second of it. Or you can be in this pose, peaceful and non-reactive, breathing calmly. Either way, you’re in this pose. You decide the quality of your experience. Be the thermostat, not the temperature.” p286
“It’s as if the command centre for voluntary movement in his brain has been hijacked by a gang of naughty kids, and they’re in there maniacally laughing as they randomly, repetitively flip the switches.” p295
“Lotus flowers blossom while rooted in mud, a reminder that beauty and grace can rise above something ugly.” p333