May is Huntington’s Disease Awareness Month
Chapter 13 “A Genetic Marker”, page 113
This chapter takes place in 1983 & 1984, which were two good years in so many ways for John and me, and Huntington’s disease, but turned tragic for Lora, John’s oldest sister. The Discovery of the HD Genetic Marker in 1983
Lora was in Starting Point in this scene, a drug/alcohol rehab center.
“Another issue weighed heavily on my mind, but I didn’t dare talk about it. Because an early and prominent symptom of HD is depression, a person with Huntington’s can turn to alcohol as a way to self-medicate. With all her other problems, Lora must have been terrified of having Huntington’s, because it wasn’t an abstract disease to her. The memories of watching her mother’s struggle must have remained vivid in her mind.
After John had attended four of Lora’s sessions, he came home with upsetting news. “Dave told the group that Lora’s hospital stay last year wasn’t about hepatitis B,’ I started nodding, ‘but the beginning of cirrhosis of the liver.’
I gasped and my eyes starting filling with tears. “What did she say about me coming to her sessions? You told her I want to help, right?’
‘Yes, I asked her, Therese.’ He looked away. “She doesn’t want you there. She doesn’t even want me there, but I’m not going anywhere. She’s so angry. I don’t think it would be good for either of you.'”
From the above article: “Substance Abuse or Dependence Includes alcohol or recreational drugs. Abuse or dependence on substances can mask and/or intensify behavior symptoms. May be used to “self-medicate” from the symptoms of HD. Interferes and/or disrupts daily life, social relationships, work performance, etc.”
Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website http://www.theresecrutchermarin.com & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.
100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).
We Can Never Lose HOPE………….