John and I lived AT RISK for the cruelest disease on the planet, Huntington’s disease (HD), for 38 years. It was in 2016, that John decided he wanted to know his gene status. Many years ago, the genetic test became available in 1993, I asked him to have the test done, but he couldn’t, and I understood why. 5-tips-for-living-with-uncertainty/
Why wouldn’t John test, you ask? The reason “why”was staring at both of us everyday for 28 years; that being the faces of his three sisters who died because of HD. John didn’t want to know; hope was what he and I clung to, as well as to each other.
John’s oldest sister, Lora, my dear friend, was never tested or diagnosed because she began showing symptoms in 1982 and no test was available. She became very depressed, a common first psychiatric symptom of HD. Living AT RISK for Huntington’s disease was emotionally difficult for Lora and I knew it and so did John and we tried to help but the stress lead to her demise. Lora chose to self-medicate with alcohol, and, unfortunately, she drank herself to death. We lost her in 1989 at age 41. What-is-HD
I know how this sounds, morbid, but the world has no idea of what it is like to live with unimaginable uncertainty every day. Living with the fact that your world could change overnight, how you could be struck down with the disease at the prime time of your life, and then, how you would slowly lose your ability to walk, talk and think over a ten to twenty period of time, is beyond the word difficult. what-is-high-functioning-anxiety
It’s estimated that approximately 200,000 live AT RISK in the United States and an unknown number exists throughout the world. Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is the story of how I survived living in the shadow of Huntington’s disease, waiting and watching ever so closely to see who of the four people I loved, would fall prey to HD; John, Lora, Marcia and/or Cindy Marin. amazon.com/Watching-Their-Dance
Author Website: http://www.theresecrutchermarin.com