List o’ Books: Neuroscience and Neurological Illness

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On my post about preferring booklists to challenges last week, Laura answered my call for booklist requests. She said:

Your post asking about topics for booklists got me thinking…I work as an editor at a non-profit professional association that supports neurologists. We have a number of staff but no neurologists that actually work for the association. Much of the work that we do directly affects neurologists and the patients they care for, but many staff members don’t have direct experience with neurology or neurological illness. I have recently started a book club for staff members to become more familiar with these issues. […]We recently had our first meeting, where we discussed “The Man Who Mistook His Wife for a Hat” by Oliver Sacks. I am looking for other books (either fiction or nonfiction) that deal with neurological illness in some way. Some ideas that I’ve had so far: “Still Alice” by Alice Genova, “The Wilderness” by Samantha Harvey, but I’m not sure what else is out there.
The main neurological illnesses that we deal with are Parkinson’s Disease, epilepsy, headache/migraine, dementia/Alzheimer’s, stroke, autism, multiple sclerosis, muscular dystrophy, essential tremor, etc. 

Well of course I was interested! ;) I’m often drawn towards neuroscience-related popular nonfiction (in fact, I was reading Soul Made Flesh at the time) and I adore Oliver Sacks. At the same time, I’m not well-versed at all on neurological illnesses, so this presented a fun research opportunity. I might have gone a bit overboard in my enthusiasm, but I hope this is helpful Laura! Have fun with your bookclub: it sounds like a great idea. :)

Let’s start with the books that immediately popped into my head, either because I’ve already read them or they’re popular enough that I’ve heard of them! I know you’ve already read one of Oliver Sacks books, but I feel it’d be remiss of me not to point out that he has other relevant titles: Migraine, An Anthropologist on Mars (title essay looks specifically at autism), The Island of the Colorblind (looks at an illness found in Guam that resembles Parkinson’s and Alzheimer’s), and Awakenings (looks at survivors of sleeping-sickness who are briefly brought ‘awake’ by a new drug). Speaking of that last one, I read a wonderful medical history book earlier this year that looks specifically at the epidemic of sleeping sickness, aka encephalitis lethargica, that broke out during WWI: Asleep by Molly Caldwell Crosby (you can read what I thought if you’d like to know more). I’ve read some of Anne Fadiman’s other nonfiction but have yet to get to her best-known title: Spirit Catches You and You Fall Down. This looks at a Hmong family living in the US whose daughter starts having the symptoms of epilepsy, and the culture clash between the family’s beliefs and the American medical establishment. In my experience Fadiman’s writing style is powerful and moving, so I imagine this would be an excellent read. If you’re interested in more case studies by neuroscientists, you might look into: VS Ramachandran’s Phantoms in the Brain, which I read last year. Personally, I didn’t find it as enjoyable as Sacks, but it was still interesting. I’ve been eyeing Another Day in the Frontal Lobe, a collection of case studies by neurosurgeon Katrina Firlik for awhile now: only 5% of neurosurgeons are women. There are two well-known memoirs by stroke victims: the French Jean-Dominique Bauby’s The Diving Bell and the Butterfly, which was dictated by left eyelid blinks due to his “locked-in syndrome” and the American neuroscientist Jill Bolte Taylor’s My Stroke of Insight, which details her actual stroke experience and the eight years she spent getting her brain to recover. Speaking of patient memoirs, I’d be remiss not to mention Born on a Blue Day by Daniel Tammet, which is subtitled Inside the Extraordinary Mind of an Autistic Savant. On the fiction side of things, the only book that sprung to mind was Mark Haddon’s The Curious Incident of the Dog in the Night-Time, a novel narrated by a teenage boy with autism.

That might be enough to get you started, but I decided to dig deeper and I came across quite a few titles! I’ve divided them up into a few groups; let’s begin with nonfiction.

First up are patient-memoirs; I came across ones for several of the illnesses you mentioned.

• Blindsided by Richard M. Cohen (a journalist diagnosed with MS at 25)
• Waist-high in the World by Nancy Mairs (an essay collection instead of memoir; Mairs is in a wheelchair)
• My Story by Amelia Davis (a collection of portraits/photographs and profiles of people around the US with MS)
• Thinking in Pictures by Temple Grandin and Maragert Scariano (Grandin was profiled in Sack’s An Anthropologist on Mars; she has quite a few books published)
• Songs of the Gorilla Nation by Dawn Prince-Hughes (Prince-Hughes learned to manage her Asperger’s by studying gorillas)
• Lucky Man : A Memoir by Michael J. Fox (this focuses on his Parkinson’s)
• Life in the Balance by Thomas Graboys ( Graboys was a doctor when diagnosed with Parkinson’s and Lewy body dementia)
• Don’t Leave Me This Way by Julia Fox Garrison (after her stroke, Garrison fought against her first doctor and his diagnosis of paralysis)
• Losing My Mind by Thomas DeBaggio (DeBaggio has Alzheimer’s)

Then there are memoirs by relatives of patients; these I only found for Alzheimer’s and autism.

• Ten Thousand Joys & Ten Thousand Sorrows by Olivia Ames Hoblitzelle (Hoblitzelle ‘s husband was diagnosed with Alzheimer’s; this memoir includes their Buddhist perspective)
• Making an Exit by Elinor Fuchs (a humorous memoir about Fuch’s mother’s Alzheimer’s)
• Elegy for Iris by John Bayley (Bayley is the husband of famous writer Iris Murdoch, who was diagnosed with Alzheimer’s in 1994)
• The Siege by Clara Claiborne Park (one of the earliest books published by a parent whose child was autistic; her daughter was born in 1958)
• Exiting Nirvana by Clara Claiborne Park (published 34 years after The Siege, this looks at her daughter’s growth from young girl to adult woman)
• Louder than Words by Jenny McCarthy (celebrity memoir about her son’s autism)

Next up are neurology books written by scientists or doctors for a general audience.

• The Case of the Frozen Addicts by J. William Langston and Jon Palfreman (about a clinician’s experiences treating six heroine addicts who had suddenly developed the symptoms of advanced Parkinson’s)
• Descartes’ Error by Antonio Damasio (a look at how brain structure affects decision making processes through case studies by a neurologist)
• Making Up the Mind by Chris Frith (a neurologist explains how your brain creates your mental world)
• Head Cases by Michael Paul Mason (case studies writen by a doctor specialising in traumatic brain injury)
• Into the Silent Land by Paul Broks (a look at neuropsychology)

Finally, some nonfiction I came across that are relevant, but didn’t fit neatly into one of the categories.

• Unstrange Minds by Roy Richard Grinker (a combination academic look at autism-its cultural and scientific/medical history-and personal-Grinker’s own experiences as the father of an autistic girl)
• A Brain Wider than the Sky by Andrew Levy (subtitled ‘a migraine diary,’ this is a mix of memoir, history, medical journal and literary criticism)
• The Forgetting by David Shenk (a ‘biography’ of Alzheimer’s itself)
• The Short Bus by Jonathan Mooney (after a childhood spent hating school during sylexia, Mooney buys himself a short school bus and drives around the country talking to people who are ‘not normal,’ including ones with autism, Down synrome, deafness, blindness, and ADHD)
• Heartsongs by Mattie Stepane (book of poems by a then-eleven-year-old boy with muscular dystrophy)

Ready for the fiction? As I mentioned above, nothing immediately came to mind, so I did some searches in my library catalogue to see what came up. I had no idea what type of fiction your book club might enjoy, so I tried to include a variety of styles/genres. This is divided up by the illness present. (I haven’t read any of these though!)
Stroke:

• The Whispering Wall by Patricia Carlon (psychological suspense story about a woman paralysed by a stroke who overhears a murder being plotted next door)
• Night Gardening by E.L. Swann (a woman recovering from a stroke meets a landscape architect and falls in love as he restores her old garden)
• The Crazed by Ha Jin (this is set immediately following the Tiananmen Square massacre and follows a student who connects with a professor who has had a stroke)
• The Cigar Roller by Pablo Medina (paralysed by a stroke, a Cuban cigar roller looks back on his life)

Alzheimer’s:

• Summer Shiftr by Lynn Kiele Bonasia (set on Cape Cod, the middle-aged heroine of the novel must deal with her aunt’s Alzheimer’s)
• The Story of Forgetting rby Stefan Merrill Block (there are two narrators in this Texas-set novel; one is a fifteen-year-old boy whose mother has been diagnosed with early-onset Alzherimer’s while Abel is a septogenarian whose family has experienced EOA in the past)
• Seasons of Sun & Rainr by Marjorie Dorner (thirty years after graduating, six women friends from college spend a week at a B&B: one of them as been diagnosed with EOA)
• Promise Not to Tellr by Jennifer McMahon (this is a thriller/mystery whose heroine returns to her childhood home due to her mother’s Alzheimer’s)
• Family Mattersr by Rohinton Mistry (set in India and featuring an aging patriarch with Parkison’s, the novel looks at the ups and downs of his family)

Parkinson’s:

• The Distinguished Guest by Sue Miller (in this novel, a famous author develops Parkinson’s and moves in with her son and daughter-in-law)
• The Corrections by Jonathan Franzen (the main character has Parkinson’s)

Muscular Dystrophy:

• The Companion by Lorcan Roche (novel about a Dubliner who is hired to help a teenage boy with muscular dystrophy in NYC)

Autism/Asperger’s:

• Wish by Melina Gerosa Bellows (the protagonist’s twin has Asperger’s)
• Daniel Isn’t Talking by Marti Leimbach (a novel about a woman whose toddler son is diagnosed with autism; the author also has an autistic son)
• The Speed of Dark by Elizabeth Moon (a sci-fi novel narrated by an autistic man)

Dementia:

• Lost: a Novel by Alice Lichtenstein (one of the main characters in this novel is a biology professor whose husband has dementia)

Other fiction, that’s still relevant just not as easy to pop into a category:

• Remember Me by Laura Hendrie (set in a tiny New Mexico town that now only exists for tourists, one of the characters has Alzheimer’s and another suffers from a stroke)
• The Book of Dahlia by Elisa Albert (a 29-year-old Jewish American Princess is diagnosed with brain cancer)
• Saturday by Ian McEwan (a novel narrated by a neurosurgeon)
• A Wild Ride Up the Cupboards by Ann Bauer (a novel about what happens to a family when a child suddenly becomes ill and remains undiagnosed)
• 72 Hour Hold by Bebe Moore Campbell (a novel about a mother trying to cope with her 18-year-old daughter’s bipolar disorder despite stigma in the African American community and the US public healthcare system)

Have you read any of these? Any other suggestions for Laura?