We found out after a serious car wreck in the fall of 2009 that my mother has HD. We also know now , after the fact, that her daddy and his mother must have had HD. My only conscious memory of my great grandmother is a very small woman with jet black hair and a nodding head.
I only remember my granddad as having tremors when he would light his pipe, no other time. My mother was always a restless sleeper, constantly moving, but I do not ever remember seeing tremors that were uncontrolable until after the accident. My granddad was 70 when he passed and still pretty much did everything he wanted to. My mother is now 81, she was 78 when she was in the car accident and after the put her in the rehabilitation center it became apparent that their was more going on than just trying to recover from the injuries of the accident.
For years my dad had told us that Mother was behaving and saying things that were contrary to her usual self , but it was only to him. We just figured she had finally got to the point she was speaking up for herself. When the medical doctor said he thought from what my dad told him (about her past actions) that she had HD, none of us believed him, we insisted that she have the genetic testing done. Guess what, positive at age 78, and up until age 76 she had walked 3 miles a day and never met a stranger, wonderful country christian lady, most like the proverbs 31 virtuous woman as anyone I have ever been around. Remembered everything you told her and about your family and put them on her prayer list and remembered them by name, she has memorized more of the Bible than even any preacher I know.
She is in a senior home now because my dad ( who is not in good health) could no longer care for her and would not let us kids take her into our homes. After the accident she lost control of her bowels and bladder and could not make it to the restroom and he could no longer help her if she fell. She has difficulty communicating verbally now, but not understanding and she still plays a mean hand of dominoes, but the cognitive part of her brain does have difficulty when asked an open ended question. If you say what do you need, she may not be able to pull the right words up, but if you say" do you want water or milk" she will answer her preference. She is in a wheel chair most of the time, not because she can not walk, but because she no longer has the ability to guage when she is too close to another person as to trip or fall either herself or another and they are afraid she will break a bone herself or cause someone else to. But she does walk with someone along side of her daily/
When she is having a bad day you can see her stomach and the chorea is obvious , and she has difficulty swallowing on bad days. Thankfully, most days are good and my dad, her husband of 60 yrs is there every day.
Because I have 5 children and 12 living grandchildren, and we know that if you do not have the genetic defect then it does not skip a generation, I decided to get tested so all my children and grandchildren would not have to be tested or deal with the problem if I did not test positive.
I have two brothers, niether one of them have chosen to test. They each have children and one has 9 grandchilren.
In 2011 I did test positive. My mother's sister , in her 70's tested positive also that same year, but there are few if any physical signs of chorea, just the cognitive issues of emotional outbursts occassionally when something is very disturbing, the inability to "let go" once something has got to be "worked out", the tendency to become argumentative but not insubordinate, and the tendency to speak one's mind even when it is inappropriate.
Just information, my daughter thinks that part of the reason that it went unnoticed so long is that my mother was not employed outside the home and did not have the stresses that are part of that. But she did travel with my dad and needed to be ready at the drop of a hat to go"whereever". I do work outside the home as I am a widow since 2010 and I notice more and more ( after the fact) that I am a bit more emotionally inappropriate with my verbal responses to situations and things that I feel strongly about even to the point of being obnoxiously contentious. This , I do not recognise when it is happening but only afterwards when I have offended someone and have to ask what I have done and apologize for my emotional outburst or inappropriate verbal responses of ( things I could have thought but should not have said).