A Love Story

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is John and my love story, over 38 years, and how living at risk for Huntington’s disease (HD) impacted our lives and how I coped with this huge uncertainty in my life.  By incorporating mindfulness, hope and forgiveness, I was able to live my life fully everyday with John.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. 

The precariousness of the situation, living with John’s unknown gene status, actually fortified my marriage.  The threat of my world changing overnight taught me to love deeply in the shadow of John’s mortality.  In my case, love conquers all.

2 Comments

  • Reply Jennifer Owens March 12, 2016 at 9:22 am

    Whewww!! This has been the cycle in our family also. My grandma had 4 children, 3 girls and a boy. All 3 women are at the end stages of Huntingtons, my mother being one. My self and my sister have both been tested. I am positive,she is not! My brother has not yet been tested. Many people ask me why did I chose to get tested? I have almost always known that I too would have HD after all, I was “my mother’s child” Almost every thing in our lives have been identical. My life is almost a repeat of hers. I was beginning to notice the signs but kept it to myself. I wanted my mother to be able to fight her fight without knowing my fate. I am mostly healthy other than being a little bit over weight and living a life battling addiction. My symptoms are mostly cognitive at this time. I chose to get tested so that I could be a guinea pig. So that I can be a part of research so that I can make people aware of this disease!!!! I thank you for your work and have faith that this will be published!!!!

    • Reply crutcht March 12, 2016 at 10:38 am

      I admire you for wanting to help with the research. My sister-in-law, Cindy, who lived in Canada most of her life, participated in a clinical trial in the 1990’s because she wanted to help. Cindy and her sister Marcia, both donated brain tissue for research when they died. My book will get published one way or the other but now I’m working to get a large publishing firm to take it. If you saw the movie or heard about the book, “Still Alice” it’s about a woman with early onset of Alzheimers. I believe there can be a movie about Huntington’s disease. Take Care. Therese

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