Life Interrupted: Living the unimaginable, Huntington’s disease patients and caregivers share their truth of strength, courage, and perseverance as … called the worst disease known to mankind.

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Living the unimaginable, twelve Huntington’s disease patients and caregivers share true stories of struggle, devastation, and life-shattering events as they travel the journey that is HD. Along the way, you’ll meet ordinary people who develop extraordinary strength, courage, and perseverance as they try to counterbalance the chaos of lives falling apart as HD shows up like an out-of-control wrecking ball. One woman struggles for years to find her biological family, then discovers more than she expected. Agonizing parents watch helplessly as their children endure years of pain, lose every bit of their quality of life, and die far too soon, some from the juvenile form of HD. Couples fall in love, marry, and start their families just in time for this horrific disease to step in and rip everything away, eventually taking their soulmates’ lives and leaving them with the knowledge that their children, too, may face the same terrible fate. Witness the strength of these families as they rise to the challenge and advocate to be the last generation ever to live with the horrors of Huntington’s disease, a genetic neurodegenerative disease that has often been called the worst disease known to mankind.

Publisher ‏ : ‎ CreateSpace Independent Publishing Platform
Publication date ‏ : ‎ July 15, 2015
Language ‏ : ‎ English
Print length ‏ : ‎ 380 pages
ISBN-10 ‏ : ‎ 1511858257
ISBN-13 ‏ : ‎ 978-1511858250
Item Weight ‏ : ‎ 1.24 pounds
Dimensions ‏ : ‎ 6 x 0.86 x 9 inches
Best Sellers Rank: #1,687,512 in Books (See Top 100 in Books) #6,927 in Traveler & Explorer Biographies #11,249 in Memoirs (Books)
Customer Reviews: 4.4 4.4 out of 5 stars 94 ratings var dpAcrHasRegisteredArcLinkClickAction; P.when(‘A’, ‘ready’).execute(function(A) { if (dpAcrHasRegisteredArcLinkClickAction !== true) { dpAcrHasRegisteredArcLinkClickAction = true; A.declarative( ‘acrLink-click-metrics’, ‘click’, { “allowLinkDefault”: true }, function (event) { if (window.ue) { ue.count(“acrLinkClickCount”, (ue.count(“acrLinkClickCount”) || 0) + 1); } } ); } }); P.when(‘A’, ‘cf’).execute(function(A) { A.declarative(‘acrStarsLink-click-metrics’, ‘click’, { “allowLinkDefault” : true }, function(event){ if(window.ue) { ue.count(“acrStarsLinkWithPopoverClickCount”, (ue.count(“acrStarsLinkWithPopoverClickCount”) || 0) + 1); } }); });

10 reviews for Life Interrupted: Living the unimaginable, Huntington’s disease patients and caregivers share their truth of strength, courage, and perseverance as … called the worst disease known to mankind.

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  1. Arlene

    Great resource/insight
    I have worked on a unit with HD and ALS residents since Jan. 2020. Working on a unit with residents with HD is both challenging and rewarding. I was looking for a book that would share stories from varioous perspectives. Ths book looks at the lives of both those inflicted with HD their families (some who inherit the gene and some that do not) and how this dis-ease has changed their lives. It provided so much more understanding of a perspective that so many do not see…I was so shokced in a few of the stories at how badly some inflicted with HD and their familiy were treated by nursing homes. Dx HD is still in its infancy as is it’s treatment. This book also reinforced what I feel as I work with residents with HD and their families…..that this disease is not the person…..that they deserve to be treated with respect and understanding and as tough as it may be they deserve to have their dignity and quality maintained. This book has given insight as to the importance of getting to know what the person was like before HD interrupted their lives….which may be only through the eyes of their family by the time they arrive on our unit. Thank you for this book.

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  2. Kevin Manelski

    50% chance of getting it, read Inside the O’Briens instead
    The book is fine but the writers are insufferable and self absorbed. I saw 2 aunts die, one from a stroke in her 30s another from starvation from Huntingtons. I have a good chance of inheriting it and if this is my future well I’ll stick to donating to Doctors Without Borders till I pass.

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  3. Alice

    Worst are those who have it when they are young
    I still have not finished the book yet. But these are true stories of how HD affects us. I know most of them and so already have an idea how their life in affected by HD. HD is a nasty disease with no cure. It affects generations of families. Worst are those who have it when they are young. We also suffer financially. We need more awareness of HD. We need more个government involvement to help us. Sadly to say, my application for disability was denied. Yes US disability. They said I am not a US citizen and so on. Please help us to raise awareness of HD.

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  4. Wych

    Not enough.
    Sad that it didn’t give MORE info on the daily struggles for each person. Very disappointing.

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  5. Margaret Morquecho

    A Must Read!
    I have seen 3 family member die from this unimaginable disease and not too many people even know about it. It passes from one parent to it’s offspring so the other parent eventually sees her husband die and then her children. An eye opener and not curable. Maybe in the far future. Very painful (emotionally, mentally and physically) for the one who has the disease and for those who have to take care of them .Dibilitating! margo

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  6. CAMallay

    Grateful
    I am so grateful for those that contributed to this book by sharing personal experiences. A door has opened for me to become a caregiver and I will step through. There is much to do to prepare as best one can for some of the possibilities and eventualities, and the book is an invaluable orientation and eye opener.

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  7. J. Blanton

    This Is Huntington’s Disease.
    Enlightening first person narratives about living with Huntington’s Disease. Tales filled with confusion, then denial, then determination.

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  8. Lisa J Lambert

    Touching and courageous true stories
    I am amazed at the courageous and brutal openess to share their lives and their true stories with their struggles to deal with such a tragic fatal family diesease that wipes out family trees! 12 touching stories dealing with a fatal disease…..and actually written to get into their minds and lives of people living with Huntington’s disease!

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  9. Grannyjanjan

    Caregivers and PHD ‘s (people with Huntington’s disease) give you a glimpse of life with Huntington’s disease. It isn’t an easy book to read, because HD is awful, and there is no cure, but so worthwhile. We need a cure!

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  10. Amazon Customer

    Still reading this book so will enter review when l have finished.

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    Life Interrupted: Living the unimaginable, Huntington’s disease patients and caregivers share their truth of strength, courage, and perseverance as … called the worst disease known to mankind.
    Life Interrupted: Living the unimaginable, Huntington’s disease patients and caregivers share their truth of strength, courage, and perseverance as … called the worst disease known to mankind.

    $18.95

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