Wendy's Story: Homework For Hope
Wendy and her two sisters moved with her parents from England to the United States when they were young. When Wendy was 14, she and her family were in a terrible car accident, which killed both of her parents. In hindsight, her father was suffering from Huntington’s Disease, which may have contributed to the crash.
The three girls were sent to live with an abusive uncle, and learned the hard knocks of taking care of themselves. They formed a bond that held them together through the hardest of times, and holds them together still today.
In the late 1990s, Wendy began to develop symptoms of depression. Medications helped some, but her symptoms never completely resolved. Knowing that Huntington’s Disease was in her family, she pursued genetic testing which confirmed that she indeed had the gene for HD.
Wendy worked as a nurse, but found her work more and more difficult. Her depression worsened, until the only thing she was able to do was her job. Bills were lost or left unpaid, and housework accumulated. She began to drop things, stumbled occasionally and hit the sides of her garage while parking her car. Her neurologist suggested that she inform her employer that she had HD and consider disability. When she informed her employer, she was abruptly terminated, losing all of her benefits. She took a nursing job answering questions by phone, but continued to have problems at home, resistant depressive symptoms and even some temper outbursts which were very much out of character for her.
In 2007, she began to see a member of the HD Clinics on a monthly basis. The mountain of problems she felt she faced was separated into individual monthly goals, and she was assigned “homework” after each clinical visit. First, a new antidepressant regimen was started, and applications to drug companies for compassionate use were made. She went on short-term disability and—after many applications and countless phone calls—finally saw long-term disability approved. She allowed her sister to help with management of her finances, and eventually moved into her sister’s home for safety as well as financial reasons. Without work, she created a new daily routine that included predictability, exercise, good nutrition and enjoyable activities.
The hardest decision was surrendering her driver’s license and creating new transportation options, but she did so with grace. Communications with her family about her wishes began with conversations about the loss they all experienced with her illness. She enrolled in HD studies at Wake Forest University, and recruited her adult children to participate as well. Her current “homework” is to evaluate what activities and goals will make the next stage of her life worthwhile to her. Fourteen months into treatment in the HD Clinic, with depressive symptoms and the pressing social issues behind her, she is free to determine what makes life with Huntington’s Disease worth living. It’s not that there aren’t bad days, but there is also hope for good times to come.
