On June 7, 1970, I married Darrel, who had been my high school sweetheart. Eventually, he and I started a family, which includes three daughters, each the love of our lives. Darrel became a construction estimator in roofing, and I taught in a junior high school. Life was made up of family time, work, and the usual day-to-day events.
Then, in his late 50’s, Darrel began to walk with an odd gait and his personality had begun to change. Eventually, through some research and a contact with a cousin living in another state, I concluded that the culprit was Huntington’s disease, and Darrel willingly submitted to the genetic testing that confirmed this diagnosis, Darrel was forced into retirement, and I accepted retirement a few years later to be available for whatever care he might need.
I felt horrified at the possibilities for Darrel: losing his abilities to walk, speak, and swallow, to make good decisions, and even to exhibit the personality traits that had attracted me to him 40 years earlier. In addition, and most significantly, I realized that our three daughters, were at-risk. The thought of these beautiful young women becoming debilitated and suffering a horrible death at first put me into the throes of utter despair, but then I found some avenues of hope.
We resolved, as a family, to attack HD in the following ways. First, we educated ourselves, by reading all of the literature available, by attending the HDSA National Conventions and education events, and by attending support group meetings. Secondly, we resolved to take active roles in fundraising and other HDSA activities. I have been the Team Hope Walk chairperson since 2011, and my daughters have been involved in the walk, too.
As Darrel’s symptoms progress, my caregiving role may get in the way of my volunteering, but I will continue to give what I can to our grassroots efforts for as long as possible, because it is the one way I feel empowered over this incredibly cruel disease.