Huntington's Disease Society of America
Hello, my name is Kirsten Waldschmidt and my family learned about Huntington’s disease in 1993 when my grandfather was diagnosed. He passed away because of this disease in 1996. Before I committed myself to a serious relationship I wanted to know if I carried the gene. In February, before my 30th birthday, I began the process of screening for the gene. I discovered that I was not a carrier, and was very relieved. My relief was bittersweet since I still had not told my parents that I had been tested. While out to dinner during a visit with them, I stated that I had been tested and was not a carrier. Unfortunately, my daddy was not as lucky. On my 30th birthday, June 14, 2005, my daddy was diagnosed with HD. Things had been going relatively well until my mom unexpectedly passed away on January 16, 2008. As an only child, this was my HD awakening. I became the legal guardian of my daddy, and took over all finances and instantaneously became a long distance care giver. Thank goodness for my committed relationship with my now husband, as he was very supportive of me. Every week I drove 300 miles one way to take care of my daddy. As his condition worsened care became unbearable and more difficult. After numerous retirement and nursing homes, I finally found the best care facility in the world, Gracelen Terrace. GT currently cares for numerous patients with HD. When my mom passed away I vowed I would do everything I could to help my daddy. I visit him every other week with hamburgers in hand, and play Yahtzee with him and his friends. I also chair the Team Hope Walk here in Portland, this year we are marking our 5th anniversary.