Investigative reporter Weiner has combined the story of his mother's gradual decline from Lewy body dementia, a rare and only recently identified neurodegenerative disease, with the quest of mechanical engineer Jamie Heywood to save his beloved younger brother Stephen from ALS (amyotrophic lateral sclerosis, better known in the US as Lou Gehrig's disease. As much a loving tribute to the remarkable Heywood family as to the brothers themselves, Weiner traces Stephen's disease from the first onset of symptoms through diagnosis, while also taking the reader through the steps Jamie (both driven and naïve) took as he created a foundation and systematically analysed pre-existing research in the area. He also looks at the stresses the research put on Jamie's other relationships, on the family as a whole, and how the drive to find a cure affected Stephen's fledgling relationship.
The text finishes with Weiner visiting Stephen in his new home, with an afterword that deals solely with Jamie and a dead end in the research, which left this reader at least with a feeling of anti-climax. Though I knew there was (at least as yet) no cure or even promising therapy (as I have a connection with neurological medicine), this isn't ever clarified in the book, which I think would leave many readers unsatisfied. Through wikipedia I know that Stephen died through an accidental ventilator disconnection, but that isn't alluded to, either.
Weiner does a fairly good job of describing the technology clearly enough for the layperson which maintaining accuracy, but I felt as though he wasn't sure which of the many stories he wanted to tell, leaving a number of short, interconnected narratives rather than one cohesive and absorbing, encompassing story.
It is a difficult and complex story to tell, but from time to time I found the little touches of detail (like Stephen's interaction with a clerk at a hardware store: "Stephen bought an edge trimmer and a roll of cherry veneer for the bookcase") too distracting and unnecessary, and this was the case throughout the book - details of verisimilitude about people's offices, or histories, or music, may serve to create an atmosphere and strengthen Weiner's research, but I found them obfuscating the story, and detracting from some genuinely breathtaking aspects. Chief among these was Jamie's overnight transformation from someone with dyslexia to having an eidetic memory and the sudden ability to assimilate and contrast reams of high level data in a field with which he was previously unfamiliar. I also learned that people with Lewy body dementia often see fairies or pixies, often en masse, which I found fascinating.
If you're interested in reading about people becoming greater than they realised they could be, cutting edges of medical research, the perils of clinical trials and the inflexibility of ethics committees (as well as the frightening lax supervision of trials once permission is granted), this is the book for you. But be warned, it's not straightforward, and sometimes the greater picture is obscured by concentrating on the details. - Alex