I Fight for Understanding: 31 Days of Coping With Huntington's Disease

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 ©(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.