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The relationship of the Heywood brothers, and the rest of the Heywood family, is how it is supposed to be; families are supposed to circle the wagons, as we are suddenly and unceremoniously inducted into a fraternity we'd give anything not to know. This book means different things to different people. If you're affected in any way by ALS, it's that hand to hold that reminds you that while the disease is horrible, it will be okay.Those of us who have loved ones with ALS, we know what is to come, we understand the dire nature of this diagnosis, but that doesn't mean we don't have hope. Read this as a book that is about human spirit, about family, about love and dedication that is lacking in so many ways in this world. Read this because when the diagnosis comes, with the averages spewed about having 3-5 years to live, maybe more, maybe less, you need hope, and the Heywoods, not only do they give us hope, they exemplify the spirit of what family is.
Given the slow pace of medical research on most complex disease, the odds of even a billionare being able to save a brother in a short time frame are near zero, let alone a family of more modest resources. I read this book solely based on the author's fantastic first book "time love and memory", but found this book to be utterly boring. Instead of an entertaining read filled with scientific facts, we get the tragic and predictable story. The writing style seemed overly simplistic, and i kept thinking that there were many facets of the story that to me, would be much more interesting, but didn't get told for whatever reason. With great respect for the author, i found this particular book unappealing.
If it stayed the same, I was OK. He dismissed it as fatigue, but his hand continued to weaken and other symptoms arose. He pops in and out of the proceedings at various stages of disability, and appears lost in the tornado of Jaime's quest, the author's personal struggles, and the medical discourses. His account of the moment when he discovered she was "not Ponnie and.not my mother (p 220)" is perhaps one of the most disturbing passages I've ever read in a non-fiction book. Finally, he could no longer ignore signs that something was wrong. The author uses Stephen's saga as a gateway to the world of cutting-edge medicine, including cloning, gene therapy, and the use of stem cells.
How do you deal with such a worst-case scenario, and how far do you go for a cure.So it was with Stephen, a healthy and active 29-year-old from a successful family of overachievers. Not surprisingly, medical ethics also come into play, such as the right and wrong of profiting via seeking cures, and experimental drug trials on dying humans who have no other options. He was examined and given a terrible diagnosis: ALS (Lou Gehrig's Disease). Fortunately, it turned out to be a cyst. Jonathan Weiner writes in a clear fashion, and has the ability to make complex subjects easy to comprehend.
But I came away from that experience with the knowledge that things can go terribly wrong in my body even if I do everything right. So I had to have a CAT scan every six months for a year in order to monitor the growth. Weiner was not exempt from tragedy either, for he parallels Stephen's fight with his mother's decline from a rare neurological disorder. There was a growth in my kidney that the doctors said was either a dense cyst or a tumor. He also reveals the arcane world of drug development and testing in the United States. One day, Stephen was unable to turn the key in the door of the house he had just finished remodeling. Second, the book does not end with Stephen's inevitable death and its repercussions. Jamie founded an ALS foundation and enlisted the aid of various medical and research experts to help him find a cure using gene therapy.
A couple of years ago I had a cancer scare. But most compelling was the personal story of a family rallying to the side of a terminally ill member. Mr. Despite its excellence, I would've liked two changes in "His Brother's Keeper." First, it seemed that Stephen was a cipher in his own story. As Stephen's health declined, the pressure to find a cure intensified, until the stress began to take its toll on everyone involved. I wanted the closure of finding out how Stephen and his family dealt with his passing and the aftermath. But if it expanded, cancer was the most likely diagnosis. But even with these issues, "His Brother's Keeper" is a fascinating tale of one family's forced entry into a part of medicine that is almost science fiction in nature.
His younger brother Jaime, an engineer with an entrepreneurial streak, immediately switched careers to genetic engineering and began a race against time to save Stephen. I was afraid that "His Brother's Keeper" would be a turgid read, but I was mistaken. Perhaps that was intentional, but knowing Stephen better would have made him a more compelling figure. Recommended.
The book itself is compelling as it glides you through the journey Jaime Heywood (the protagonist) takes in order to engineer a cure for his brother who has been diagnosed with ALS.Weiner does a great job in showing the reader the reality and complexities behind scientific discovery and engineering. Nonetheless, Weiner is honest in the sense that he as a bystander (despite cheering the Heywoods on with all his might), is capable of comprehending the truth of the matter at hand - an incredibly interesting perspective.The book reads almost like a fiction. He also manages to showcase the giants in the world of neuroscience and neurology - the battle and fuse between academia and industry - the red line between ethics and empathy.Although the summary on the back cover claims the book is written in 'translucent prose' - this is only partially true. It is evident that Weiner exerts considerable effort to keep the techno-jargons as simple as possible, however it is hard to appreciate the scientific gibberish without any prior knowledge (or interest) in the neurosciences.Weiner writes in an incredibly personal manner and at times his bias and favourtism seems a little overwhelming. The Heywoods seem almost too good to be true (any other ordinary family would have fallen to tatters). Then again not many families have handsome business-minded chap with lucrative connections in the MIT and a Pulitzer Prize-winning author documenting their story.A good read.
It is well researched and although science is one of the major stars here, the author makes it understandable to the lay person. I read a review of this book and instantly wanted to read it. It is a heartbreaking story of an amazing family and the sacrifices one brother makes for another. It made me laugh and cry along with the family - the kind of book you save to read again. I will follow Steven's progress with care and keep this family in my heart for long after the book is finished.
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