Nov 03

Against Medical Advice: One Family’s Struggle with an Agonizing Medical Mystery

Posted by Soliloquy in Adults with disabilities | For parents | Neurological Disabilities

Cory Friedman woke up one morning when he was five years old with the uncontrollable urge to twitch his neck. From that day forward his life became a hell of irrepressible tics and involuntary utterances, and Cory embarked on an excruciating journey from specialist to specialist to discover the cause of his disease. Soon it became unclear what tics were symptoms of his disease and what were side effects of the countless combinations of drugs. The only certainty is that it kept getting worse.

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5 Responses

  • TSMom says:

    Review by TSMom for Against Medical Advice: One Family’s Struggle with an Agonizing Medical Mystery
    This book was a phenomenal retelling of the life of someone with Tourette Syndrome. As a mother of three boys who all have the same diagnosis as Cory, I feel like I can adequately say that I am more of an authority on the subject than most. As I read through his life struggles, weeping through a great many of the pages, I could identify with much of the grief and pain that he and his parents have gone through. I believe that everything in the book was very accurately portrayed, from the lack of understanding of the educational system to the medical roller coaster ride of trial and error, not to mention the misery inflicted by social situations. I feel like the book was tastefully written to not bash the people who do not understand this condition, (including medical/mental health professionals) but to portray the frustration and mental anguish caused by this lack of understanding.

    I highly recommend this book to all, but especially to those who have the fortunate opportunity to touch the life of someone with Tourette Syndrome. As is obvious in Cory’s case, these children are incredible. They have to overcome so much more than the rest of us would ever dream of imagining just to live, let alone succeed. Thank you Cory, for sharing your life with us.

  • BrianB says:

    Review by BrianB for Against Medical Advice: One Family’s Struggle with an Agonizing Medical Mystery
    This is an fascinating, discouraging, and ultimately hopeful story of one child’s struggle with Tourette’s Syndrome, obsessive compulsive disorder, alcoholism and misunderstanding. Although Corey, the one afflicted, did not write the book, the authors present it in the first person, giving the story a personal feel and immediacy. Corey develops a severe form of Tourette’s at age five. He is given a variety of medicines over the years, and he suffers from a bewildering and distressing constellation of symptoms. Not surprisingly, he struggles at home and at school. Some of his teachers are understanding, and some are hostile, as he often disrupts the classroom with his unorthodox behaviors.

    The book details how Corey receives ill treatment at the hands of the medical and educational establishments. Some of his doctors suffer from the messiah complex: the inability to admit that they might have prescribed the wrong medicine. Some of his teachers do not like him, because he can appear very difficult in class. He has a very hard time making friends. This prolongs and intensifies his misery.

    I didn’t always feel complete sympathy for Corey. At times, especially toward the end of the book, some of his complaining feels excessive. Corey maintains that his school aid entrapped him, reporting him for smoking on campus, an activity which was previously tolerated. He does admit that they “can’t officially allow me to have a cigarette on the property.” and he was supposed to walk far away from the school, but he was “a little lazy.” He feels persecuted by the school board that recommends he repeat his junior year. After reading about the events of that year, It seemed that it was a reasonable decision, but the authors describe the board in highly unfavorable terms. The school relents when his mother makes a impassioned case for allowing him to continue. Still, they get very little sympathy from Corey.

    The story is a valuable history of a child and a condition that is still a medical mystery. The writing is personal, direct, and to the point. I completed the entire book in two days. It seemed that Corey was speaking directly to me as I read. If you have an interest in Tourette’s you should read this book, because it gives valuable insight into a personal experience. You cannot get this insight from a medical textbook. What emerges is the fact that modern medicine did not make anything easier for this young man. The education system helped him in some ways, but failed him in others. This book may not be a masterpiece of non fiction, but it could be a good and useful book for physicians and educators alike.

  • Anthony L. Marchigiano says:

    Review by Anthony L. Marchigiano for Against Medical Advice: One Family’s Struggle with an Agonizing Medical Mystery
    Some parts are intense. A few pages are among the realest, most moving pages you will ever read. Some parts were tough to experience through Cory’s eyes, but the comfort and redemption of this book and the message it leaves you with is that we as Human beings are strong and can endure more than we can imagine if we refuse to be defined by our misfortune and embrace the love of those that love us. This book, better than any I have read, tells a true story in a real way.

  • Matthew J. Haslett says:

    Review by Matthew J. Haslett for Against Medical Advice: One Family’s Struggle with an Agonizing Medical Mystery
    This is a wonderful book about a strong young man with a similarly strong family. I personally do not know anyone with Tourette’s syndrome and can only imagine how moving this book will be for them, given the effect it has had on me.

    I feel honored to have had the opportunity to read this book about a truly remarkable young man named Cory Friedman and his wonderfully supportive family. It is a tale that has inspired me and humbled me. Reading about Cory’s life makes me realize how incredibly strong some people REALLY are, how incredibly powerful their will to live is, and how incredibly powerful some families’ bonds are.

    If you want to read a book that will uplift your spirit and open your eyes to something beyond outstanding, then do not hesitate to read this book – you will hang on every page and probably finish it in several hours like I did!

  • Anonymous says:

    Review by Anonymous for Against Medical Advice: One Family’s Struggle with an Agonizing Medical Mystery
    A friend gave me this book to read when my son developed Tourette’s, and the tragedy is that this is the impression she has of what the course of TS actually looks like. I think a lot more was going on for this youth than what was reported, and not a lot explained the parents rapid cycling through various treatments for the multiple things the kid was going through. That kind of knee jerk reaction may have made things worse instead of better. A lot of parents get into this idea that they’ll polarize treatments and doctors, into categories of saviors on the one side, and that they know better than anyone else on the other, and if anything, this book is a good example of it. I’m glad the kid got better, but question what was it that he really got better from? The ending completely led me to mistrust what was written and made me ask, what are they not saying or sharing about the family dynamics, emotional and substance abuse history in the family, trauma??? I would not recommend this book to anyone wanting to understand TS.

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