Huntington’s Chorea Disease (HD) is a hereditary, degenerative brain disorder, which there is no cure for. “HD slowly diminishes the ability to walk, talk, reason, and eventually the person with HD becomes totally dependant on others for their care. Huntington’s Disease profoundly effects the lives of the entire families emotionally, socially, and economically”. “Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.”
Every generation there are a couple people in my family that are born with HD, one of which is my mother. The person who has the disease is actually born with it, but usually they don’t start showing symptoms until mid-life. My mom grew up with a normal life, married my dad when she was 19, went to nursing school, had kids, then decided to be a stay at home wife/mother. In her very early 30’s one of her fingers started twitching all the time, and I guess that’s when they knew she had HD. Currently, my mom is about to have her 47 birthday this month (praise the Lord). Back in September 2010, she went to the hospital with aspiration pneumonia. That was the scariest point in my life up until this moment. Her dad died from aspiration pneumonia, he also had HD, age 57. It was a very serious ordeal. She was in the hospital for 2 months, ICU for a couple weeks, and then rehab for a month. My mom is 5’3, she’s never weighed more than 105 pounds. When she was in the hospital her weight dropped to the 70’s. That was when my family came to reality about how bad she really was, she has to eat soft food and she has to drink everything with thickener. Well, “Chorea” means movement, and that is exactly what she does. She is in constant motion, except in her sleep. Therefore she burns a whopping amount of calories and must consume a whopping amount of calories, which is very hard to do considering the types of foods she is limited to. Her dad, her uncles, and her grandpa also had it. There are various other people in my family that currently have it. Huntington’s Chorea is not openly talked about within my family. It’s like the family curse that will eat you alive if you even speak of it. By the way, Me and my sister have a 50/50 chance of having the disease.
www.hdsa.org
I'm so sorry you have to live with this. I wonder if the reason nobody talks about it is because they want to enjoy every minute with family and not spend time talking about hard topics. Maybe you should write a book. I think that's a great idea. It would be hard, but it would bring so much light and understanding to other people. I said in one of my previous blogs that this it kind of like a type of therapy! haha It does help to get things off your chest and have someone to talk to!
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