MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!
HOPES Book Review (Huntington’s Outreach Project for Education, at Stanford University) HOPES website
“Huntington’s was first known as Huntington’s chorea, as in choreography, the Greek word for dance. The term chorea describes how people affected with the disorder writhe, twist, and turn in a constant, uncontrollable dancelike motion. It is a hereditary, degenerative brain disorder for which there is no effective treatment or cure.”
–Watching Their Dance, pp. 11
In one life-altering moment, Therese Crutcher-Marin learned that the man she loved and his three beloved sisters were at risk for one of the most devastating genetic diseases: Huntington’s Disease. In Watching Their Dance, Crutcher-Marin recounts her journey of love, uncertainty, loss, and strength in the face of Huntington’s Disease. She tells a vivid and personal story of the experience of loving someone at risk for Huntington’s Disease, meticulously sharing the details of her fears, the symptoms of the disease itself, the care-partner experience, and the loss that inevitably comes with Huntington’s. Thrown into the wildly unsteady and frightening path of Huntington’s, Crutcher-Marin returns repeatedly to the mantra, “nothing is certain in life.”
Crutcher-Marin weaves in details of her personal struggle with uncertainty, a daunting challenge for a woman averse to taking risks. She skillfully captures the awkwardness and difficulty in breaching the subject of Huntington’s with loved ones, and expresses a deeply personal account of her anxiety and suspicion as she worries that she can see the beginning of Huntington’s symptoms in her husband and friends. The book shows the diverse ways in which Huntington’s Disease can manifest itself in daily life to affect both patients and their care partners.
We Can Never Lose HOPE………………….
Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website http://www.theresecrutchermarin.com & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.
100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA. http://www.hdsa.org Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.