Living with Huntington’s Disease: What I’ve Learned as a Caregiver
$9.99
Huntington’s disease (HD) has been called “the worst disease known to mankind.” HD is a genetic, neurodegenerative disease that causes motor, psychiatric, and cognitive symptoms. Since there is currently no treatment or cure, the best you can hope for is to manage the symptoms with available medications. Huntington’s disease is ALWAYS fatal. So what happens when your child, the person you love most in this world, is diagnosed with this monster? The author shares her experiences and what she’s learned along the way, including how to advocate for your loved one and the grief and resilience that go hand-in-hand with living with HD.
Publisher : Independently published
Publication date : April 25, 2019
Language : English
Print length : 129 pages
ISBN-10 : 109559009X
ISBN-13 : 978-1095590096
Item Weight : 7.4 ounces
Dimensions : 6 x 0.33 x 9 inches
Best Sellers Rank: #1,304,921 in Books (See Top 100 in Books) #2,119 in Grief & Bereavement #26,763 in Personal Transformation Self-Help #192,000 in Religion & Spirituality (Books)
Customer Reviews: 4.3 4.3 out of 5 stars 29 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); } }); });
Ginnie Grimm –
My friend and fellow advocate
Sharon is a pillar in our community. She was the editor of my book and another one that was multi-authored. We have become close friends, but this, this brought me to an even deeper level of respect for what she does. Most of us advocates are living through hd hell with our loved ones, experiencing loss after loss as hd and jhd consume entire familes. Sharon does a superb job of shedding light on that whole grieving process. Read this book!!!
Alan –
Good advice
This book is loaded with good advice on many aspects of being a caregiver. It points to many sites on a variety of subjects from how to.get help applying for.social security benefits to grief management. Also many personal stories. We in the ND community are not alone. This book proves that. My thanks to the author for sharing, it’s not an easy thing to do and she does it well.
Robert C. –
Excellent Huntington Disease Reference Book
Since I am a caregiver for my husband who was diagnosed with HD in 2012, I try to keep informed on everything associated to HD, this book is absolutely awesome.
amber schanlaub –
Was not what I was expecting.
Didn’t really care for this one. Wasn’t what I was looking for.
Prime Purchase Princess –
Help4HD
I received this book at the 2019 Help4HD symposium, and read it as I traveled home. I am not gene positive, at risk, or a parent or a spouse. I have dealt with psychosis and incarceration as a professional. I have also sat in a genetic counselor’s office and learned that one of the most important people in my life has HD. With all of the biases my life experiences bring to the table this is an amazing book. It is well written, raw, and difficult to read. It doesn’t sugarcoat anyone’s reality. This reads like journal entries and explains this family’s reality and also sheds light on other experiences. This is a short read if you can make it through, but if you are human, this is not an easy read.
Madtatter –
I have HD so my fiance will need this…thanks for writing it.