Chorea Books

Leal has done a fantastic job putting faces with a disease that most people know nothing about. She puts the reader right in the midst of the agonizing decisions that people with Huntington's disease have to make.

Since the disease is hereditary, should those with a history of Huntington's in their family get tested for the gene that causes the disease? Should those with the disease have children knowing that they could pass the disease along to the next generation? When, if ever, is it time for the person with the disease to move to a nursing home?

I didn't know anything about Huntington's before I read Leal's book. After reading it, I have a deep appreciation for the struggles that families face after a positive diagnosis.

If you are looking for a book about Huntington's that doesn't gloss over the hard parts of life and yet at the same time shows you what faces of courage, hope and faith can look like during trials, then this book is for you.

I am in the early stages of HD and I can understand the negative review. My wife has promised me that if my mind becomes that of a four year old, she will not dress me as a four year old and take me to an amusement park and allow strangers to photograph me. I know at that time I might not notice the loss of dignity, but I care now. If we do go, I want to go as an adult with HD, not wearing a "Goofy" shirt. The author seem insensitive to me.

As a healthcare professional I've worked with a few hundred families touched by HD over the last 17 years. Among those families, this book "Faces..." is known as a tool for hope, support and inspiration. I have purchased many copies of this book over the last few years and given it as a gift to families.
The positive reviews here clearly reflect the overwhelming praise that this book reliably receives from folks touched by HD.
I respect the views of the folks who've posted those negative comments. HD is the worst damn disease that can touch a family and it manifests itself in unlimited ways. And everyone handles it in their own unique way. However, it would be sad if a family looking for a source of hope like this one turned away from it because of those comments. The overwhelming percentage of folks who've read this book talk about it as an important source of hope and support for themselves.
Read it and see for yourself!

I just re-read Faces of Huntington's and decided it was time to write a review. I am so thankful this book was written and published. Again I was amazed at the author's sensitivity and her ability to pack so much into one book. For far too long there was nothing written about this disease except what was in a medical book. There was certainly nothing about the people themselves. I liked how so many people were included and not just the author. This gave us a much more complete and accurate picture of the disease from all sides.

I was amazed to read the negative review. I understand that not everyone sees the glass half full versus the 99% empty the person who reviewed the book sees. But the review seemed more an attack on the author's character rather than on her work. I feel really sad that someone is so bitter they can't see anything but ugliness no matter where they look. Makes me wonder did they really read the book since in the book I read had stories about suicide, abuse, juvenile Huntington's, death and other real effects of this devastating disease. When I read the review I wondered why this person doesn't write their own book filled with their 42 years of experience.

Faces of Huntington's is one of those books I know I will go back to many times over the years and will recommend to others.

I have purchased the book Faces of Huntington's,read it,and recommended it to friends.
This was a book that needed to be written.
For the first time I was able to read stories of other people dealing with this disease,like I am.
It is a book that is very easy to read.
Not all stories are sad , and that was encouraging.
You will find ways to handle your problems by reading how others have.
I found my self re-reading the book many times , its comforting.

This has been one of the best books I have read. The character of Scott was captivating. The author's writing kept me wanting more. I actually couldn't put the book down. Mr. Kish's insight and expressions throughout the book are nothing short of amazing. So much spirit came through this book. I felt as though I knew Scott personally. His
intelligence, his humor. The descriptions of each of the other patients, their struggles, their characters...the staff..all of it just brought me into their world for a short period of time through Scott's eyes; the author's words. I have learned much from this book, it made me think of things I never thought of or never knew regarding institutional living and how things can be perceived. And the feelings...so easily expressed through Mr. Kish's words. The ending was very sad, but inevitable. The author's words, everything, every part of this book allowed the story to flow.

I would say a look at the new counter-cultural text since Ken Kesey's, "One Flew over the Cuckoo's Nest." A gem in itself if carefully scrutinized. Consistent through-out. The writing style was punctuated by prolific poetic prose. Well thought-out and patiently constructed. Looking forward to reading more from this author.

I've heard the term being used in discusing Blue Institution's merit around a brightly lit coffee table filled with cocktales of all sorts, "Haunting...the story of a young man afflicted with Huntington's chorea while living in an institution for the developmentally delayed, (see, you've got us doing it now Ernie Kish, 'developmentally delayed') gives a voice to the voiceless." Yea. I heard about it and didn't think too much about it until somebody said it was Huntington's chorea that Woody Guthrie had. Not everybody knows about that. So I look into the local book store and order me up a copy and Bang...! Right away I'm struck in the face...captured...only able to stop reading...got up to page 3 where you're already immersed in drama...only to have to stop to get into my car and drive away. So much drama, three people involved in a confusing situation only to be compounded by another who takes total charge just to preserve the dignities of a schedule and manhandling a client whether it be for his good or not only because the schedule could not be broken. That's how intense this author is.

This is a very sensitively written work. There's too much detail written into the book for it not to be based on a true story. The author really does a good job at bringing out all those wonderful words and uses them with craft to stir your emotions. I mean he really gets you going at times. My husband also liked it and I overheard him talking about it at a dinner party we went to the other evening. My husband is a big Tom Clancy fan and I a big Nicholas Sparks fan. It's funny that my husband and I both enjoyed reading Blue Institution. It's the kind of book I think Oprah Winfrey would recommend to her audience, and perhaps she will if she hasn't already. It's a story about a young man who stuggles with a terrible disease in an at times horrible setting. Yet, he tries to maintain his sense of humor and even feels sympathy for the rest of his "friends" that live in this state institution. I don't want to spoil your reading of Blue Institution so I won't give away any more details. I hope you enjoy it as much as I.

I laughed for about 20 minutes after reading the last chapter, then remembered something in the middle of the book and found myself trying to find it. After I found what I was looking for I mentally congradulated the author for what he did and/or how he did it. It's not your typical story. I feel you too will enjoy reading this book. You may find some surprises also. It was also a learning experience for me as I'm studying teaching in a special environment. I only wish some of my college textbooks read this well.

In the Gene Hunter, we learn the story of one woman's crusade to understand the genetic disorder known as Huntington 's disease. Nancy Wexler, the `gene hunter' in question has herself been impacted by the disease having lost her mother and other relatives to Huntington's. The book tells Wexler's story from her the formative experiences in education and her private life to her recent work in remote areas of Venezuela where there is a high concentration of people suffering from the disease. The book is excellent for its accessibility. The author has managed to take a complicated field of science, genetics and genomics, and made it understandable for adolescents. Unlike many books dealing with complex sciences aimed at young adults, the Gene Hunter does not pander. Rather, through clear and concise writing the book is able to convey the various intricacies of the genetics of Huntington 's disease without being either overly complicated or simple-a difficult achievement. A wonderful book with beautiful illustrations and photographs, I would recommend this book not only to the young adult readers at which it is aimed, but to anyone who wishes to learn more about Huntington's disease.

This is an excellent, comprehensive book about Huntington's Disease. It is written for doctors, scientists, and other professionals dealing with Huntington's Disease but can also be read by Huntington's Disease families who wish to gain a deeper understanding of the disease. Each chapter is written by experts. There is information about the history of Huntington's Disease, its neuropathology, the psychiatric and behavioral problems, research, genetics, epidemiology, and the treatment of symptoms.

In addition the information about HD that has been published in medical and scientific journals, there is some valuable information from clinical practice that can't be found elsewhere.

I purchased the book to help me answer questions posed by readers of my HD websites and I have found it to be very valuable.

So many people have written rave reviews to the Sulaiman's and the publisher on this book, I was surprised not to see any posted under Amazon's book review!

Huntington's Disease has been so intricately entwined into the fabric of my life since the early 1980's when my only child, Kelly, was diagnosed with the Juvenile form of this devastating disease. Throughout Kelly's life, and since her death at age 30 to complications of JHD in 1998, I have been deeply involved in trying to help families living with Huntington's Disease by providing resources and support where I can. "Learning to Live With Huntington's Disease: One Family's Story" is one of the best non-fictional books on HD to be written since Carman Leal's "Faces of Huntington's" was published in 1998! Whether you are a professional involved in providing support to HD families, a person diagnosed with HD, a young person growing up in an HD family, a person at-risk for inheriting the disease, a friend or a relative of a family living with HD, or a spouse thrown into the role of a "caregiver" in an HD family, each chapter in this book not only will touch your heart but will provide you with insight on how this disease affects every single aspect of the life of anyone who is living with HD!

I highly recommend reading "Learning to Live With Huntington's Disease: One Family's Story"!

Jean E. Miller
HD Patient Outreach
HDSA HD CoE at USF~Tampa, FL.
HD Links: http://get-me.to/hdlinks

Although the Chinese Ch'an meditation masters liked to remind disciples that "The lowest class of monk is the one who indulges in literature," Robert Perchan in Perchan's Chorea (Wichita, Kansas: Watermark Press, 1991), for all his Rabelasian rauchiness and flesh-haunted wit, comes across as something of a monk as much as a poet in his travelogue on his perverse nights and days in South Korea. The bald, pudgy and minoxidil-dropping Buddha figure shadowing this cross-cultural journey into Pusan and Seoul has pitched his poetic mansions in the foul-rag and bone shops of a whore-loving heart. Recounting his ill-fated loves across language barriers and cultural blinders with three women named "In-Ja," "Mi-Ja," and "Un-Joo," Perchan is looking for love-- and the Buddha, and the muse of poetry-- in all the wrong places, like his beloved Korean goddess Un-Joo scolding the clams ("YOU GODDAM CLAMS! YOU ARE GOOD FOR NOTHING! I WORK MY FINGER TO A BONE AND YOU COME HOME STINKY OF SOJU AND YOUR PANTS IS FILTHY!") when she should be scalding them. This Korean version of Madame Butterfly ultimately will stomp the American dreamer.
Perchan's "Chorea" creates and choreographs its own venereal world elsewhere, compounded of fact, word lists, linguistic anecdotes, news clips, fiction, cartoons, balderdash, an account of plastic surgery, vision, advice to the lovelorn, Korean erotica, private fragment. Choreatic, extreme, the sketches and prose poems of an American professor lost and found in Seoul, nobody would accuse Perchan's Chorea of being politically correct nor even mimetically faithful, amid the warfare of post-orientalism, despite Perchan's excerpts of Korean Herald items and ill-written love letters chunked into the text. Still, this mixture of narrative, cultural commentary, and lyric fragment comprises a stupendously funny, gutsy and funky, language-tuned, and quite touching portrait of "eros and exile" in South Korea.
As creature and creation of cultural sadomasochism, Perchan cuts through sentimentality, cant, and cultural piety towards revealing the class brutality, male exploitation of women, and commonplace misery that remain in this Asian NIC. Given the tragic and conflict-ridden history of Korean people in the twentieth century, it is risky to compound any Korean problem by exposing it. Further, "To injure [Korean] national pride, no matter how minimally," writes Nagisha Oshima in "Korea As I Saw It," "is unforgivable," and this social touchiness remains a problem some twenty years after the Japanese film director himself found the chance for redemption amid the reconstructed rubble and furiously human energy of Seoul.
The result of Perchan's comic journey into otherness turns into a fractured jewel of a book, a homage to Korean women as the exploited heart and soul of this strong country. Like the anthropologist friend categorizing Korean women by their pubic hair, Perchan is admittedly one of the American exploiters, fallen, abused, lost somewhere in the pits and on the edges of redemption. But the honesty may just save him.
Finally, as in Im Kwan Taek's cinematic portrait of Korean spiritual life in modern times, Mandala, the Buddha of Korean zen is not found in temples and groves but in beer houses, train stations, makoli parties, whore houses, the love of orphans, bastards, the dispossessed. The quest remains a male- centered story of selfish contracts and broken loves, expressed without bitterness or rage. Perchan's Chorea registers a story of compounded fragments and lyric insights well worth savoring.

Sixteen and Dying written by Lurlene McDaniel is about a sixteen year old girl Anne Wingate. Anne has been diagnosed with HIV from a blood transfusion. Anne and her father live together. While Anne is in the hospital someone drops off a check from the One Last Wish Foundation. Anne wants to go to Colorado for vacation, to a ranch with the money she was given from the One Wish Foundation. While Anne is at the ranch she gets sicker and meets Morgan. Anne and Morgan spend a lot of time together while she is at the ranch. He doesn't know her reason for leaving without saying good-bye. I really liked this book because it seemed like something that really could happen. I really sympathized with Anne and what she had to go through. The plot and characters were very life like and easy to relate to.

Lurlene McDaniel is a great author who has written over 40 books. She writes books about people who have life treating illnesses. She started to write about illnesses when her son was first diagnosed with Juvenile Diabetes at age three. To make her books be medically accurate Lurlene researches about the illness she is going to write about.

This book was very depressing but funny. It was about a girl named Ann who finds out she has AIDS. She claims she got from a blood transfusion. Yeah right. But we won't get into that. So she finds 100,000 dollars in a check from JWC. So her and her dad go to a ranch in Colorado. Where she meets Morgen a jerky guy who works there. At first hes really hostile towards her. Then he wants to sleep with her. Really confusing if you ask me. Don't worry she doesn't sleep with him out of spite. Then she goes home to die. And he does a stalker type of thing and tracks her down. And thinks how ugly she looks but he doesn't say anything. Then she dies and he cried. Boo friggen hoo. I think Lurlene Mcdaniel just likes when teenagers die.

I liked this book because it was written like I knew the girl and that we had a special relationship.
Anne is so happy to go on vacation. She and her dad are going to a ranch since Anne loves horses. They are going on a special vacation because Anne had just gotten out of the hospital for a blood transfusion. At the ranch, Anne starts to get sick and has to go to the hospital again. She finds out she is HIV positive. Her father is furious. Later they find out it was from the blood transfusion she had gotten before is why she has HIV.
I recommend this book to anyone who likes sad books and anyone who wants to know the harmful things that happen when you have HIV.

I was really looking forward to this book, but now I'm kinda mad that I actually bought the book. It wasn't bad or anything, but it just wasn't what I was expecting. I was really hoping for romance. But there was hardly any.

So here's the plot or whatever. Anne is 16 when she goes to the hospital and realizes that she has aids from a blood transfusion 6 years ago. She only has like 4 months to live. She decides that she wants to go to a dude ranch for the summer with her dad (her mom's dead)for the last part of her life. She meets Morgan, the owner's nephew, who's 18. He likes her, yet they never become like girlfriend boyfriend. I mean, I don't think there's even one little kiss. What's up with that? She doesn't tell him she has aids, and when she cuts her hand and he tries to help her, she wont' let him. He's confused and hurt because he doesn't know that since she had aids, he could get it by touching her blood. Anne leaves without saying goodbye, and Morgan feels hurt. He actually goes up to New York where she lives. She's dying, and he stays with her until the end.

I'm a big fan of Lurlene McDaniel's books, mainly because I love romance. This book just didn't have any. It's still good, just not great.

I just finished this book yesturday, and I am searching for more. It was my second Lurlene Mcdaniel book, and all I can say is that this may be the best book I have ever read. I could not put the book down. The story just draws you in and I think most people can relate to the story in one area or another. WHen I put the book down I cried, and if it can touch me like that, I think it can touch the millions of people who will, or have, read it. I just fell in love with it, and now I am rereading it. It was just absolutly brilliant.

Double Helix

This book was an okay book. It is the story of Eli Samuels who is graduating out of high school and gets hired at Wyatt Transgenics by Dr. Quincy Wyatt. Dr. Wyatt seems to be paying special attention to this Eli. Meanwhile Eli's father has a bitter dislike for Dr. Wyatt although he won't tell Ely why. Eli suspects it has something to do with his mother, who is suffering from Huntington disease. This book is a mystery of Wyatt Transgenics and Dr. Quincy Wyatt. Follow Eli as he searches through his family's past to find out what the hatred for Dr. Wyatt was and why he is taking special interest in Eli. This book is full of relationships in the character's life and scientific mysteries.

First of all let me say that I am not the target audience of this book, as I am a very well educated middle aged man who is very Transhumanist in my views.Maybe this book appeals more to teen agers, but I found that the book wallowed way too much in teenage angst. Often I found the characters behaving in unrealistic ways. The main character seemed to obsess repeatedly about the same issues. I also found that the subject matter was handled in a way that was too conservative and narrow minded for my taste.

Eli's father has a secret. What does it have to do with Eli going to work for Dr. Quincy Wyatt, molecular biologist, at Wyatt Transgenics? Is there a connection between Dr. Wyatt and Eli's mother, who is in a nursing home, suffering from Huntington's disease? As he searches for the truth, Eli makes some chilling discoveries. And the truth is worse than he could ever imagine. This is one mystery you'll not be able to put down, until you, too, learn the secret.
Listen to the Ghost
The Secrets I Have Kept

This book is about an eighteen-year-old boy named Eli and the mystery of his secret past and his job at Wyatt Transgenics where he discovers things about himself.
When I started reading this book, I immediately got sucked into the story. The word choice is phenomenal, and I felt like I was actually there. When I saw the book it just screamed, "Read me!" maybe because I'm into this technology stuff. But, I think anyone from age 13+ will enjoy this book. It has so many different styles in it. Science fiction, romance, suspense, and mystery are all crammed into this one book!
I also like how the title of the book is subtlety slipped into the story. So when you notice it you say, "So that is why it's named Double Helix." Another thing I like is the cover; I know they say not to judge a book by its cover, but I do. If the cover doesn't look good I usually won't pick it up off of the shelf.
The whole time I was reading this book it was like nothing else in the world mattered. I just could not put the book down. Out of the many books I have read this is one of the best.

After recently reading and reviewing Nancy Werlin's The Rules of Survival, I went in search of some of her other books. I discovered DOUBLE HELIX, and it didn't disappoint me.

Eli Samuels, salutatorian of his graduating class, has decided to postpone college for a year. His father is not pleased. But Eli is struggling to decide just exactly where he is headed in life. Complicating matters are his relationship with his girlfriend and his mother's illness, Huntington's disease.

Eli and his father have been struggling with Ava's illness for many years, but the end is near. She is confined to a nursing home and not even aware of their visits. Eli's future is uncertain because Huntington's disease is hereditary. His mother may have passed him the gene which carries the disease. A simple blood test holds the answer, but Eli is not ready to know the truth.

Dr. Quincy Wyatt, a famous scientific researcher, offers Eli a job at Wyatt Transgenics. It involves caring for research animals and helping in the lab. The more Eli learns about Dr. Wyatt and the work of his company, the more he begins to question what he knows about his own life.

Using clever twists and turns, Nancy Werlin has created a real nail-biter that makes this book hard to put down.

Reviewed by: Sally Kruger, aka "Readingjunky"

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.

I was very drawn into this book.
I am not a "reader" but wanted something light, educating and interesting and this was it!
As I read this book, my sister was in the hospital so I was more drawn into the life of Claire as a resident and found unbelievable Godly interventions. While reading something in the book, my sister happened to be going thru similiar situations.
My only discontent was the ending of the story.
It was out of place and very strange.
I did learn so much about things I knew nothing about (Huntingtons and the life of a new resident )
I have strongly recommended the book to many of the nurses I encountered while reading the book.
Enjoy!!

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.

Beautiful book. This book brings to life the science of Huntington's, as well as the personal dilemmas surrounding genetic testing, as written by one of the pioneers of this test. I also recommend Time, Love, Memory: A Great Biologist and His Quest for the Origins of Behavior to anyone who enjoys this book for the scientific, biographical aspect.

I felt Mapping Fate was a very informative and interesting book about Huntington's disease and genetic testing. I highly recommend it for anyone with Huntington's disease risk in their family. Also, very useful for anyone interested in genetics and genetic testing.

A must read for anyone interested in Huntington's disease. This book tells about how HD affects families and tells about how the gene was found after a ten year search. Courage and perserverance -that's the Wexler family-they give courage to so many others who are also on the same difficult journey with HD.

Wexler tells an incredible story of both the personal and medical aspects of HD. She takes the time to explain the important biological and genetic background, while not overwhelming you with useless facts. She does a wonderful job explaining the pain of having a family member with HD, while not soley focusing on their struggles. I learned a lot about HD through this book, and would recommend it to anyone wanting to learn more about the disease and its biological basis.

This book is just as other reviewers have said-- a heartbreaking but fascinating tale about two sisters' response when a devastating disease crops up in their family. But it's not a depressing, downer of a read. The two sisters deal with the future possibility of their own disease diagnosis in different ways but both have many lessons to teach all of us facing something difficult (and who doesn't at some point). And the story-within-a-story about the search for the Huntington's gene is a really candid and interesting look at the world of important scientific research. It's just a good read.