I Fight for Understanding: 31 Days of Tips for Coping With Huntington’s Disease
$9.99
Part of Help 4 HD International’s “I Fight for . . .” campaign for HD/JHD Awareness Month, May 2017, this book began as a series of tips on a Facebook page for caregivers of people with Huntington’s disease and Juvenile Huntington’s disease .
The roller coaster is a metaphor not just for the ups and downs of living with HD/JHD, but also for the breakneck speed and unpredictability with which changes often occur.
Just when you’re riding along smoothly, things begin to build up, and just when they reach their peak, you plunge with your loved one into the abyss that always seems to be waiting just over the top.
But it doesn’t end there. Everything levels out again, and you rock along, only to hit the rise, peak, and plunge once again. Over and over, you ride the roller coaster with your loved one who has HD/JHD, and every time, it can be just as scary and unpredictable as it was at the beginning of the ride because, you see, you never know what’s coming around that blind corner! The journey can last anywhere from 10 to 25 years, and the only thing for sure is it’s one hell of a ride!
The tips within, written by a nurse who has been a caregiver for her mother-in-law, ex-husband, and two sons with HD, are meant to help caregivers navigate their way through this journey.
Help 4 HD International Inc. is a grassroots, nonprofit 501 (c)(3) organization whose mission is to educate the world about Huntington’s and Juvenile Huntington’s disease. To learn more, please visit www.help4hd.org.
ASIN : B0727SWVBR
Publisher : Help 4 HD International Inc.
Accessibility : Learn more
Publication date : April 28, 2017
Edition : 1st
Language : English
File size : 1.4 MB
Screen Reader : Supported
Enhanced typesetting : Enabled
X-Ray : Not Enabled
Word Wise : Enabled
Print length : 73 pages
Page Flip : Enabled
Best Sellers Rank: #2,198,532 in Kindle Store (See Top 100 in Kindle Store) #105 in Genetic Health #169 in Genetic Disorders & Diseases #5,682 in Two-Hour Health, Fitness & Dieting Short Reads
Customer Reviews: 4.3 4.3 out of 5 stars 26 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); } }); });
7 reviews for I Fight for Understanding: 31 Days of Tips for Coping With Huntington’s Disease
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sarah foster –
A must read for HD families
This book shares practical advice for caregivers. Specific symptoms of HD are explained by Patch, a respected and loved advocate whose writing is informed by her medical background. It’s a must for a caregiver’s library.
Bonnie –
I did not read this, but the subject is important to me.
I made a mistake and did not read this. Can you reinstate it for me so I can read it? Thanks very much. Bonnie Bowe
Ginnie Grimm –
Eyes wide open
This reads like a devotional and was helpful in bringing light in dark places. Each tip made me realize that the things going on in our home are par for the course. Very insightful.
Kristjs –
Not good or helpful
As an HD caregiver, I was very disappointed in this book. I got nothing from it. It felt like juvenile cheerleading at the end of each (extremely short) chapter. I was hoping for some tips or realistic advice I could actually use, didn’t get anything from it at all.
Amazon Customer –
Knowledge is power … a must read
What an eye-opener. Ms. Patch’s new book about Huntington’s Disease is one EVERYONE should read. It doesn’t take that long … everybody has enough time to read it. Not just caregivers of someone with that dreaded disease, but also those of us who are healthy and strong and untouched by Huntington’s in order to appreciate our own well-being and better understand those who are less fortunate.Ms. Patch’s description of the science behind the disease was interesting, although brief. As a RN, it prompted me to dig deeper for more information and refresh my memory about what actually happens in the body. Most of the book was a poignant description of the challenges facing friends and family of people with HD which would be tremendously helpful if you ever find yourself a caregiver. From tips on dealing with everyday issues, to knowing how to prepare for the next turn in its progression. She also shares many resources to help navigate this disease.Surprisingly, it can present itself as mental illness. The person standing in line with you at the grocery store may appear rude and aggressive, but expecting normal behavior from that person is impossible if their behavior is the consequence of HD. Don’t expect them to act normally, and don’t expect to be able to correct their behavior with any degree of success. The brain has lost control, and the person is incapable of empathy, logic and constraint. Step aside (or offer your help?) and pray for them and their caregivers.Seek first to understand. Withhold judgement until you do. Especially with this disease, but just maybe in all aspects of your life. That’s where this book took me.
S. M. Hayes –
Encouragement for Coping with Huntington’s Disease Behaviors
This book contains wonderful insights into how to deal with someone who has Huntington’s disease. Behaviors change, the person changes, and so our reaction to the person suffering from this horrible disease must change. Ms. Patch teaches us how to recognize behaviors that are part of the disease and gives us tips on how to respond to them. She also, along the way, inspires us and offers us hope. The book can be read daily, in 2-5 minutes a day, but you may not be able to put it down!Everyone should read this, not just caregivers, but families and friends so that they understand what it’s like to live with Huntington’s disease. Chances are, unless you’ve lived with the disease before, you have absolutely no idea of the daily challenges it presents, in ways you never would have thought.
Heather W –
Early stage caregiver to spouse
I was able to relate to so many topics discussed in this book. The author also provided links to other helpful resources. Really glad I purchased this book.