Huntington's Disease Has a Face After Reading This Book
597972
I found the book to be both powerful and intriguing. I don't think I ever heard of Huntington's Disease before, but by the end of the story, I not only had a feeling, but a face, for the disease. The only thing I repeatedly cringed about while reading was the use of bad language. I am sure the author meant to make the life of this Boston Police Officer & his family (who is Irish) more authentic, but I found the language offensive, and it will definitely make a difference on how and to whom I recommend the book. Otherwise, the book is another great novel by an author that I have liked in the past and will seek out in the future.
4774233
This book is a must for anyone who has been diagnosed with these diseases or knows someone who has been diagnosed.  It is a compilation of patient experiences, information about the diseases, information about the latest treatment options, treatments on the horizon, and comments from doctors from the various specialties that could be involved in treating these diseases.  The medical information about the diseases and treatments was written by Dr. James Berenson, an acknowledged expert in the field.  One could almost call this a handbook for patients and their families.

Truthfully, I was afraid to read this book because I am still coming to terms with my diagnosis.  I thought reading it would make me feel worse.  It was just the opposite.  Once I started reading it, I couldn't put it down.  Reading the patients' descriptions of their experiences living with theses diseases was extremely enlightening and, most of all, very encouraging.  The overwhelming theme from the patient stories was how, in spite of the disease and the treatments, they were still able to maintain a reasonable quality of life - a lot of them for many years.  That gave me hope.  This book is full of hope.

In case anyone is wondering, all the proceeds from the sale of this book go to supporting the Institute for Myeloma and Bone Cancer Research.
105822
So much great information! I bought this book because I have a physical condition that I strongly believed to be stress related. I was shocked to learn how little physical risk factors play in disease and that stress is actually the biggest risk factor. Some of the biggest stressors are repressed anger, unresolved childhood trauma, and just a general daily feeling of helpless frustration. The knowledge in this book is worth every penny of the price. However, this book will be priceless to those individuals who read it, heed its warnings, and make some changes in their lives Before they get sick!!
3275381
For me, the title was a bit of a play on words.  Are we to look inside the OBrien family or are we to look at the insidious gene mutation that is literally inside the OBriens?  Either way, this is a fascinating look at a family that is slowly being torn apart and put back together by a degenerative disease that is playing roulette with their lives.

Only forty-four years old, Joe OBrien a police officer from the Charlestown, Massachusetts is beginning to think that something is not right.  His body is jerking, he is becoming forgetful, and his temper is flaring.  He is showing the same signs that his mother did before she went to the state mental institution.  His problems are not hers, she was a raging alcoholic, and even the neighbors knew that and used her as local gossip.  Joes problem has to be different, he does not drink to excess and he has a stressful job, that is all it is, job stress and four children.  That is until he sees a neurologist and by a simple test he is diagnosed  Huntingtons Disease.  A neurodegenerative disease with no cure that he has possibly handed down to each of his four children.

Each child has a 50 percent chance of inheriting their fathers disease.  Each child has to make the personal decision if they want to take a blood test that will reveal their fate.  Each child is currently in their twenties and if they are gene positive, symptoms should not begin to appear for another ten to twenty years.  Joe Jr. and his wife have been struggling for three years to get pregnant.  Before Joe Sr. tells his family, Joey and his wife conceive.  What could this mean for their unborn child?

Oldest daughter Meghan is a lead dancer with the Boston Ballet, if she is positive how will this affect her choices and career.  Patrick is still finding himself and would a positive diagnosis totally derail him?  Last is twenty one year old Katie.  She has forever seen herself at the black sheep.  She is a yoga instructor and sure that she is not living up to anyones expectation.  Then she meets the love of her life and a whole new world opens.  That is until Huntingtons Disease could derail everyone and everything that she hold dear.

Each child must make their own individual choice.  They see what their parents are going through and each must come to their own decision.  Will they take the test or will they live with the uncertainty? Will they live with love in their hearts and continue to be there for their father, a man that taught them to never give up and to stay in the fight. Can they help him live with dignity so he can then be their first and best example of how to face HD?

Told through the perspectives of Joe Sr. and Katie, Lisa Genova takes the reader through every scenario, every realization, every fear that the OBriens must face.  It is heartbreaking and heartwarming as you watch a family break apart and come back together.  As you watch a grown son finally understanding a mother that he thought abandoned him.  A comprehension dawning that she never left and loved him until the end.

By the last chapter, I found myself holding my hand over each page not wanting to risk that the final outcome would be revealed too soon.  I did not want to rush, I wanted Katies reality to hit me full force like it was about to hit her.

I loved this book; I loved how their story was told.  I loved how each person was an individual and that they as a family were not the sum total of the disease.

Fact:  The mutation associated with Huntingtons disease (HD) was isolated in 1993.  Ninety percent of people at risk for Huntingtons disease choose not to know.
4912390
This was the author's internal narrative when first told by his doctor that he had Parkinson's disease.  I've had a father who suffered from Parkinson's in the years before he died, and I've had a brain tumor, so I think I can relate to the author's emotional rollercoaster in spades.

There actually are some similarities: everyone's journey through either of these experiences is unique.  It's a devastating diagnosis, one that takes awhile to absorb.  There are obvious differences, too, but certainly the shock and the "how am I going to live my life with this?" questions are similar.

For Peter Dunlap-Shohl, it led to the creation of a brilliant graphic novel recounting his experiences through initial depression, dealing with the various physical challenges that arise, medications that work or not, family/friend reactions, all with wit and superb graphics.

This really should be a "must read" for anyone newly diagnosed with this progressive devastating condition.  It really is a brilliant graphical account of life with Parkinson's.
2380440
I cannot recommend this book highly enough - Lisa Genova's writing is so real - knowledgeable and empathetic. She brings us into a world that we would not have even imagined unless we knew someone with Huntington's disease. I did know someone and was able to witness some of her struggles first hand but it was only in the early stages. I had no idea what lay ahead of her. I have read all of Genova's books and I think this one resonated with me the most. Keeping in mind she is a neuroscientist, you know you are getting the most true to life account of how neurological diseases affect a person and their family - they are both devastating and rewarding. This book is at times difficult to read, but I am so pleased that I read it and I would recommend it, along with all of her others.
558054
My husbands family has this disease.  His mother, grandmother and brother all have died from this.  I remember reading this book looking for any info that might help me understand this horrible disease.  It was a very good read.  Very sad when it's true stories.  So glad I have this book again as our other copy was borrowed out and we have no idea where it is.  Thank you Dr Schut for getting the word out there.
2038878
I really liked how Ms. Genova  flashed a more in depth insight into all the characters and how each one was effected by the  diagnosis of Huntington's Disease.  I feel much more informed about this terrible illness and the havoc it wreaks on the sufferer and those around him/her.
Thank you for writing this.
2024882
I'm not normally a fan of Young Adult fiction, but was interested to read this as I work (on the research side) in Huntington's Disease. I found the descriptions of family life and the characters to be very accurate based on my experience. I think in addition to being an excellent and entertaining work of fiction, it is a very important book that will raise awareness of this condition and hopefully motivate more people to get involved in helping to find treatments for HD.
1060292
I enjoyed reading An Absent Mind.  I am the main caregiver for my brother that was diagnosed with dementia and early onset Alzheimer's approximately two years ago.  This book helped me understand his actions and the disease much more than any of the reference books I've read.  I enjoyed how the author wrote the "thoughts" and "difficulties" of each family member.  I have experienced some of these first hand and struggle with his anger and frustration as well.

Messy
Texas
3607173
The author's willingness to share so much in a brutally honest way amazes me. She had to research and revisit, or learn for the first time in many instances, how bad she was doing physically and mentally and how close she came to death or possible lifelong institutionalization. Then, she  openly bares herself for all to read. I learned so much and am truly fascinated by the  bodies ability to betray itself. I, too, have autoimmune  disease (Crohn 's Disease and Rhuematoid Arthritis) so I am aware of this type of illness but had not heard of it affecting the brain. I also am a  Professional Counselor so my curiosity is definitely  piqued about the possibility of misdiagnosis in patients...Thank you so much for sharing your story!
3737895
Looking for a book that has everything?

The dastardly villain--Early onset Alzheimer's disease! Blazingly intelligent content, not patronizingly dumbed down.

Fascinating characters: PhD Alice is a Harvard superstar professor of psychology specializing in linguistics, whose early onset Alzheimer's gene clicks on. Alice notices that she is forgetting words she knows, becoming disoriented to place and time, and losing track of items. Her brilliant mind is no longer quick, nor automatic, nor trustworthy.

Alice's PhD husband John, also a Harvard superstar professor, and their 3 children, Tom, the physician-son, Anna, her attorney-daughter, and Lydia, her  actress-daughter, each aid and assist in Alice's picaresque. (This, I learned in "Still Alice," is a long adventure that teaches the hero lessons).

Symptoms, diagnosis, work, inability to function appropriately, doubt, alienation, treatment, hope, loss, and family dynamics--Alice faces all these as she is chosen by a fate inevitable to her.  As a fascinated reader, I hoped with her that shared memories have permanence, and that love conquors...much.

But wait, there's more: Alice's type of early onset Alzheimer's disease can be passed on genetically, and Alice's three children must decide whether they wish to know if they carry the gene which mandates their having the disease. Wow.

I love Lisa Genova's books.
3526177
I had to read this book for school but it is probably one of the best non-fiction books I've read. It is all about neurological disorders and if this is something you are even remotely interested in I would recommend it!
4301977
The generative diseases (in this case neurological diseases), from parkinson, to altzheimr, a.l.s, and others like c.f.s are coverd in that book with the latest medical, and the nutritional (plus supllements) views.  The authors are both doctors. one of them is a neurologist and the other is  a docter and a clinical nutritionist, that both with their simple yet  complex explanations put a remarkable views of healling about the  degenerative diseases and shows the benfit of the long term healling with  nutrition and supllemnts. the roots of the diseases are discused very  interstingly and it is a very informative book. i do have one comment about  that book: that they givven amount of vitamin C in those specific diseases  (degenerative neurological diseases), should be much higher, but beside of  that it's the best natural book that dealing in one copy on the brain  wellness plain against degenerative diseases. i know what i'm saying  because i'm dealing with those diseases with my patients.
2339713
As hard as it is to believe, I was just diagnosed with Huntington's a few weeks ago. July 23rd, 2015. I went to the HDSA website to figure out the full ramifications of what that meant. They had an article about Lisa's novel. I immediately ordered it and it is an accurate description of my life. I'm 63 and had been showing some signs of chorea and some memory problems for about 4 years. 2 years ago I was diagnosed by my PCP and neurologist after getting an MRI in Florida as having "a chorea" but definitely not Parkinson's. They were both baffled and never mentioned HD.
  I moved to California last year and my new neurologist eventually said I might have Huntington's and I got a DNA blood test. (41 CAG repeats in HD language.)
  I knew nothing about "prodone" until I read Lisa's book. It explained a lot about my entire adult life and gave me an invaluable new perspective on my mother's "mental illness's."
  I'm actually relieved with this diagnosis because I finally have answers as to why I'm like I am.
 I have found a great local support group and am also getting on a list for any future clinical trials. I live by myself with my dog. I can still take care of myself and am able to drive. I figure I have at least 5 to 10 years minimum and totally optimistic that there will be drugs developed in my lifetime that will slow or halt the progression of this awful disease. And maybe even a cure.
  I am so grateful to Lisa Genova for writing this book and the serendipitous way it appeared the week I needed it most.
1254092
I could not put this book down because I know a lot o f people struggling with neurological  diseases and we are all looking for any information to help them. I have recommended this book to a lot of people, which might be the reason that today, at the grocery store, there was only one more jar of the coconut oil we buy on the shelf.  One chapter regarding information on silver dental fillings that contain 50% mercury is consistant with everything we know about it  We had all these fillings removed a few months ago. Particularly interesting are the many ways scientists are examining that people may be getting Alzheimer's from environmental  factors instead of heredity.  Alzheimers is on the upswing.  The number of people projected to get the disease in the next decade is inconsistent with the number of parents available to pass it down, so it makes a lot of sense to look around ourselves before it is too late and make changes if we need to.
4628880
This is a very important book for anyone that their loved one has been diagnosed with Alzheimer's . Deane's husband's descent was very hard to read  as he was a brilliant man, great father and a sweet loving person.  Alzheimer's brought out a person that Deane no longer recognized.  It is heart breaking to read her words because you know what is already coming.  I bought this book but not because I had a loved one just diagnosed with Alzheimer's but because my sweet Mother is in her 13th year with Alzheimer's. She has slipped into a dark abyss from where there is no return.

 I would hope that the people that read this book would become better prepared for this terrible disease than I was.  I have learned the hard way - just wished I had had this remarkable journal to prepare me.  God Bless Deane Johnson and her courage to write this heart breaking but at times uplifting book.