Chorea Books

The plot sometimes stretches the imagination a bit, but it is entertaining and well written; the characters are well developed, likeable, and realistic for the most part; Christian testimony is natural, edifying, and true to the Scriptures, without being preachy or offensive.

The focus is on the issues of trusting the Lord through the stresses of life and viewing marriage as a selfless commitment for the other person's well-being. It models well traditional upper-middle-class Christian values of education, loyalty, love, healthy dating relationships, self-discipline, living self-sacrificially, moral integrity, hard work, and especially how a loving Christian family acts together. The focus is on the heroine's feelings towards her boyfriend and her chances of getting Huntington's Disease, rather than on any deeper issues that could be examined, such as her feelings towards an abusive father (now helpless and unable to speak) or the on-going effects of violent rape (for other characters). The author did a good job of modelling a loving and healthy romance in spite of the stresses, misunderstandings, and offenses -- not the dark and brooding atmosphere of so many romances.

I enjoyed reading it and wouldn't hesitate to recommend it (though not for young teens).

Sometimes sequels don't live up to the first book, but this time Harry Kraus did a wonderful job of picking up where he left off. For The Rest of My Life continues the story of Dr. Claire McCall as she moves through her journey of self discovery. In the first book, Could I Have This Dance?, Claire learned that she is at-risk for Huntington's Disease. Claire wrestles with finding out her results and what it will do to her relationship with the man she wants to marry, but also with her career. I found her response to the disease, the testing, her father who has HD, and other conflicts true to life.

As the author of two non fiction books about Huntington's Disease and as a frequent speaker at HD conferences, I found the portrayal of the disease authentic. I like that the book focuses not only on the romance but on real- life issues and conflicts.

The Pacing was excellent and Dr. Kraus did an solid job of weaving the various story lines together to make for an engaging read. I found the characters realistic for the most part, and while I did manage to solve the mystery in one of the stories before it was revealed, I still enjoyed the way it played out.

Dr. Kraus once again did a great job at weaving faith into the novel without being heavy handed. The issues that Claire and others went through ate the same as what people are dealing with every day. This is a book I will recommend to the members of the Huntington's Disease community and others.

Carmen Leal, Author of Faces of Huntington's and Portraits of Huntington's, Choosing Joy Through Life Lessons

If it weren't for the fact that I did finish this book, I would give it zero stars; but it did have enough interest to allow me to make it to the end. I agree with the reviewer who found the characters to be one-dimensional. While, perhaps, the plot itself was not entirely devoid of creative thought, the most disappointing aspect to this book lies in the manner in which the author weaved the influence of God/Christ in the main character's evolution. It seemed that he wrote the book in its entirety then later added a paragraph or sentence here and there to make it a Christian work. Not only are the references to Christianity/faith/God minimal, they are far too simplistic as well. In summary, I read the book but won't be reading its sequels.

This book was great from the first page. Never a boring part and a great message!

As a medical professional, this mysterious and horrifying disease has always fascinated me. This book does an excellent job exploring the misleading symptoms and the heartbreaking realities of it. Plus it was a real page turner. I am anxiously awaiting the 2nd one.

Could I Have This Dance? focuses on one woman's struggle between her past and her future, her heart and her head, and her Christian walk and the distractions of medical life. The story weaves Claire McCall's demanding hospital experience together with her small-town slower-paced upbringing, and illustrates clearly the turmoil she undergoes in her relationship with her family, her denial and then acceptance of Huntington's disease, and her ambivalent feelings toward two young men in her life.

The story is a fast-paced medical thriller, detailing interesting particulars about hospital procedures and rare diseases. However, the tale behind the medical scene deals with Claire's spiritual struggles, her character development from the purpose-driven M.D. who despises her father to a fuller woman with a developing love for both her earthly father and her Heavenly one. This maturity of Claire's nature makes it easy for the reader to identify more closely with the story as a whole.

However, certain sections of the book must work harder to fall into the story's rhythm, and consequently stand out as being unnecessary, or necessary, but in need of more development. When Claire first meets Brett Daniels at the beach, the story changes from an involved tale of Claire's struggle to remain in the competitive medical pyramid to a scene from a chick-lit novel - beautiful toned and tan female meets hard-muscled blonde life-guard type and a long time of commitment to her fiance flies out the window after one meeting with another man who carries on a normal conversation with her.

In spite of these scenes, though, the book does well, and the story remains well worth the read.

Could I Have This Dance? is an interesting book about one woman's willingness to look past childhood hurts to find an answer to a medical mystery. But the full story arc, which takes shape in this book, only reaches resolution in the follow-up novel, For The Rest Of My Life.

Why is that important to note? Because the full answers don't come until the second book. You'll finish reading this one and still have questions that can only be answered by the next book. Neat marketing trick, sure, but very frustrating to readers.

I recently reread Saint Vitus' Dance and it was as exquisite as the first time. No one writes like Ms. Rublacaba. The prose is beautiful and the portrayals of a stricken family are sensitive. Excellent!

Perhaps there is a little redeeming value in this book since it purports to discuss the feelings of a child who discovers her mother has an incurable disease that the child may have inherited. The story, however, is not believable. Because of the sudden onset of the disease and her mother's strange behaviors, Melanie feels the whole town is laughing at her family. In a small town where all kinds of eccentricities are chalked up to "cabin fever" this is hard to believe. Maybe the writer intended to show that Melanie just imagined this, but we are never quite sure whether this is Melanie's imagination or the meanness of her neighbors.

Her mother is apparently a fully functioning member of society; a fine mother, wife of one of the leading citizens and an excellent homemaker, until one day boom!, she has Huntington's with full blown dementia. This is a very misleading picture of Huntington's Disease. The sudden onset and quick death depicted in the book are not a true picture of the progress of the disease. A person with Huntington's would probably have shown personality changes much earlier than the noticeable onset of the classic symptoms of chorea. The average life expectancy after onset of these symtoms is closer to 15 years, not a few months.

Melanie does not arouse much sympathy in the reader. Her behavior is erratic and perplexing.

I do not know of any young person I would give this book to, either as an explanation of Huntington's or as a guide on how to confront hard facts about one's family and oneself.

The book also gives the mistaken impression that St. Vitus' dance is Huntington's disease. According to The American Heritage Dictionary, St. Vitus dance is a "nervous disorder occurring chiefly in childhood or during pregnancy, closely associated with rheumatic fever, and characterized by rapid, jerky, involuntary movements of the body." It is called Sydenham's chorea after Thomas Sydenham an English physician who lived in the 17th century. The name was probably also used to describe a variety of disorders.

Huntington's is a devasting, incurable disease. Those interested in learning more about the disease will not find much useful information in this book.

This is a very touching book that I will definitely read again and that I would recommend others my age read. It helped me understand how it would be to have a Mom with an incurable illness and how scary it would be. It's a sad book that left me thinking deeply about how I would feel if the same thing happened to me. I am 12 years old.

This beautifully written novel effectively introduces readers to a disease that is both devastating and widely misunderstood. Young Melanie, with her eloquent and honest voice, draws readers in by sharing what she sees and feels as she witnesses her mother's descent into Huntington's Chorea.

I read this book in French, so I cannot comment on the translation, but I do disagree with the above comments regarding the content. Anyone who is considering the test for Huntington's Disease should read this book. I found it thought-provoking and worthwhile.

The Test is a journalist's first-person account of what it means to live at risk for Huntington's Disease. The everyday experience of hundreds of thousands, it is difficult for most people to imagine, and Jean Berera has done well in humanizing what media usually sell as unimaginable. The difficulties that HD brings to relationships within a family are thoughtfully addressed. I didn't give this book a higher rating because I disapprove of the author's (or editor's) decision not to disclose his gene status until the end of the book, using it as a kind of nonfictional plot device. In my reading, the suspense that this decision inevitably promoted detracted from the author's thoughtful reflections.

Couldn't wait to read this book, as my father is struggling with Huntington's Disease, which, of course, meant my own struggle with "to test or not to test." That said, I'm sorry to report that I was sorely disappointed. While I obviously empathize with the subject matter, the inaccuracies in this book drove me nuts and stained this author's credibility with me. Being the journalist that Mr. Barema is I would think an attention to details would be a top priority. Not so, as is evidenced by his bad habit of attributing songs to Woody Guthrie (the most notable public figure with Huntington's) that Woody didn't author. "Good Morning America, How Are Ya?" is one. First off, Barema mistitles the song. It's called "The City of New Orleans" and was written by Steve Goodman. It was sung by Arlo Guthrie, NOT Woody. "Starry, Starry Night" is another notch inexplicably placed on Woody's song belt. The song was written by Don Mclean. Listen, Mr. Barema, to an author who DID get her facts straight in a book on Bob Dylan, if you're going to make frequent references to a hero like Woody know your game. Also, while the back cover blurb "Huntington's causes death within five to ten years" is gripping and more than likely geared toward sucking in the bookstore browser, it's simply not true. According to every medical web site I've ever haunted since this insidious disease entered our lives (and believe me folks, I've dropped in on them all) death from HD comes within 10-20 years. This is nothing more than an unfortunate and unsettling marketing ploy in my opinion. Apart from facts that fly around like pollen in this memoir, I didn't care for the clipped writing style. Unlike "Publisher's Weekly" it didn't hit me as "moving" or "intense" so much as annoying. Anyway, a real letdown, this one. Save your money and purchase a Woody Guthrie biography instead.

Aside from the inaccurate statistics in this book, it does serve another purpose.

Barema focuses on the anxiety, emotional turmoil and obsessive behavior that can occur during the test decision making process, which includes mothers/fathers, sisters/brothers, wives/husbands, children, doctors, etc;

Barema also writes about the issues of Huntington's Disease and the overwhelming struggle to live rationally while feeling irrational.

It seems to be a good book for those considering testing for HD and a real effort to educate anyone who may think that taking "The Test" may be as simple as just getting a blood test.

My wife has Huntington's Disease and our two sons have this issue to face themselves (whether to take the test that will tell them if they have the rogue gene and will inherit Huntington's Disease, or whether to continue living with uncertainty; with the 50/50 risk of developing the symptoms in their late 30s or 40s). So, I bought The Test to see if there is any insightful thinking in it that could help them. There isn't.

Journalists assume they can write books (the author is a journalist). I know this because I am a journalist and too many of my colleagues assume book-writing is the same skill. It clearly isn't. Also, as no translator is credited at the beginning of the book, I assume Mr. Barema either wrote it in English himself or wrote two versions - one in English and the other in French - on the assumption that his English writing was good enough for the publisher not to get a translator in to do the English version for him (he is French, but spends a lot of time in the USA and studied in the US). Unfortunately, the English is not good enough. It lacks subtlety and, often, clarity. And, as another reviewer has mentioned, below, the facts are too often simply wrong, which is far too casual and thoughtless when the subject matter is so vital for the readers, many of whom will be at risk themselves and will have bought the book for help in dealing with that.

I don't think they will find it, as I don't think it was written to help anyone. It seems to be more of an attempt to turn a personal misfortune into a dramatic work. The material has to be researched and absolutely right so as not to mislead readers who are in the same situation as the author, for whom this is information literally about their own life or death. This book isn't well-researched. Nor is it well structured.

I helped my wife put together her just-published book Learning To Live With Huntington's Disease, and we know how people at risk of this illness need information that has been checked and double-checked to avoid misleading them.

Despite the author's obvious love for his sister and brother, and his horror that they have the disease, there is also a lack of empathy for people with Huntington's in this book that I found shallow. The other people around the author, who are supposed to be central characters to his story, are shadowy and insubstantial and you never get a proper sense of them. You get the feeling the author doesn't either. People with this illness do not have 'nothing in their heads', as Mr. Barema seems to assume sometimes. Nor are they all insane or monstrous, as he says on several occasions. He seems to be over-generalizing from the terrible stories and experiences he had as a child when his mother was dying with Huntington's Disease. Even in the last stages of the illness this is not necessarily always the case. It seems to me his own fear of the illness has led him to play up the cliches.

You can live positively with this illness, even to the last, with enough determination and love. I suspect I am being too harsh. I know my own older son went through several years where he was living a life off the rails, where he was focussed on himself and not on those around him properly. Who can blame him when he had to absorb the information that there was a 50% chance he would not have a future. He pulled through that stage after several years and got himself back together, after we almost lost him.

I feel someone at that stage of the grieving process (this is a process of grieving for your future) who has come through the 'why me?' self-obsessed phase should have written this book to encourage people at risk to realize that yes, it is common to fall apart as your world falls apart around you (which seems to be the stage Mr. Barema was at when writing this book), but that, with love from others AND yourself, you can come thru that stage and become strong again. As Hemingway wrote, the world breaks all of us. But some of us are strong at the broken places. Exactly the same applies to Huntington's Disease. I wish this had been a better book. As it is, I will not be recommending it to my sons as I think it would upset them more than help them.

This is a young readers' book about growing up and finding oneself. Huntington's is only a side issue. The prose is often stilted and the characters one dimensional. The whole issue of heredity is confusing. Bent's mother has Huntington's and she is a second cousin to Bent's father. There is no known history of Huntington's in the family. The writer makes the statement that no one knows how the gene is transmitted. Simply not true. It has long been known that the gene is dominant and offspring have a 50% change of inheriting the disease. What was the author's point in making the parent's second cousins in a book supposedly about a hereditary disease?