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Huntington's Chorea is a ****ing dreadful neuromuscular degenerative disease. My father died at the age of 50. He never knew what him him. Neither did we. (We found out in 2005 when my youngest sister was diagnosed. Because it is genetic, there was a 50/50 chance we all could get it. 6 kids, 3 have it. I do not. I got lucky) He died of cirrhosis of the liver. The booze did him in. His depression (a symptom of the disease) tormented him. What we suspected were the delirium tremors were in fact the movements associated with the disease. Had he not drank he would have died from the disease anyway.
Now my oldest brother's suffering is coming to an end. He was 6 foot 5, 250, Big strapping man. Now he's less than 150 pounds and ready to die. He's 65. He turns 66 in August, but he won't make it. I hope his suffering ends soon.
My youngest sister is a vegetable who hasn't been able to speak for two years. She is near death as well. If she makes it to August 5th, she will be 67. I am stunned she has lived with this disease as long as she has.
Just buried my oldest sister 6 months ago. She was 71. Oddly enough she tested negative for the disease. Dementia got her.
And my youngest brother just turned 63. I doubt he'll see 65 as he has the disease as well.
Now we worry about my sister's daughter and my brother's daughter. Neither has chosen to test. Tough choices there. Who wants to see that snow ball coming down the hill?
I have much to be thankful for however. Both my daughters will never get the disease nor could their children. Unless they marry someone with it. Fortunately it is exceptionally rare.
Hug your partner and your kids.
Wow life sure dealt your family a lousy deck of cards. So sorry to hear this. Life is definitely not fair.
Are you religious or does this make you cynical of religion?
A friend of mine, and old cop from my town, has Huntington's. It's really awful. So sorry to hear that it has stricken your family so severely.
Thanks Kobie. It is a wretched disease. I hope his children escape it if he has any.
Sorry to hear, Top Cat. We have had and still have very serious issues in my family, so yours is not entirely unique. And without appearing callous, I'd like to comment that it sounds like you and your siblings are all in your sixties, and to be honest that's when a lot of genetic and lifestyle problems start to make their mark. My maternal grandfather and my own father never made it even that far. So perhaps you are right when you stated that you were counting your blessings. I've lost buddies before they were twenty-one, an uncle before twenty-five.Thank you. I was raised staunch Catholic but stopped going to church in my teens. Haven't been back. Oddly enough both of my brothers went the same direction as me. And oddly enough both of them have reengaged with the church. I suppose they are sensing their mortality and the Catholic guilt got the better of them ha ha. My sisters have always been religious. The sister that passed recently was a Dominican Nun for ten years.
So there's just two of us out of six that aren't sick.
He's got a couple; neither have shown any signs of it or tested up for it. Think the oldest is in his early 40s.
They do a 5K for Huntington's here every year named for this guy. Raises a nice chunk of money. Plus he's a longstanding member of the local Hibernians, so the Irish bars around here all raise funds for Huntington's research.
I really got nuthin, no words.
Just a "we got your back".
FTW, it just ain't right.
Wifey here has one kidney, MS, and paralytic bone type osetoporosis.
Son has Chernobyl Heart Syndrome.
But we're very lucky because she still gets around, still drives, we still laugh, she still
engages in a lot of the stuff she likes to do, and my son is relatively chipper and energetic considering.
Me, I'm fat, bald, hairy and ugly but aside from aches and pains from being old, I'm fine for the most part.
Blessings to you, even though we don't know each other.
Sorry to hear, Top Cat. We have had and still have very serious issues in my family, so yours is not entirely unique. And without appearing callous, I'd like to comment that it sounds like you and your siblings are all in your sixties, and to be honest that's when a lot of genetic and lifestyle problems start to make their mark. My maternal grandfather and my own father never made it even that far. So perhaps you are right when you stated that you were counting your blessings. I've lost buddies before they were twenty-one, an uncle before twenty-five.
As a Catholic who's had some lapses and a return, you might consider reacquainting yourself with the Church if you can; It's been a great institution to me, and there's been times when my faith, as weak and fleeting as it is, has been a great source of comfort. In fact, I'm envious of those with strong steadfast faith!
Anyway, no guarantees in life, so live every year like it's your last!
Huntington's Chorea is a ****ing dreadful neuromuscular degenerative disease. My father died at the age of 50. He never knew what him him. Neither did we. (We found out in 2005 when my youngest sister was diagnosed. Because it is genetic, there was a 50/50 chance we all could get it. 6 kids, 3 have it. I do not. I got lucky) He died of cirrhosis of the liver. The booze did him in. His depression (a symptom of the disease) tormented him. What we suspected were the delirium tremors were in fact the movements associated with the disease. Had he not drank he would have died from the disease anyway.
Now my oldest brother's suffering is coming to an end. He was 6 foot 5, 250, Big strapping man. Now he's less than 150 pounds and ready to die. He's 65. He turns 66 in August, but he won't make it. I hope his suffering ends soon.
My youngest sister is a vegetable who hasn't been able to speak for two years. She is near death as well. If she makes it to August 5th, she will be 67. I am stunned she has lived with this disease as long as she has.
Just buried my oldest sister 6 months ago. She was 71. Oddly enough she tested negative for the disease. Dementia got her.
And my youngest brother just turned 63. I doubt he'll see 65 as he has the disease as well.
Now we worry about my sister's daughter and my brother's daughter. Neither has chosen to test. Tough choices there. Who wants to see that snow ball coming down the hill?
I have much to be thankful for however. Both my daughters will never get the disease nor could their children. Unless they marry someone with it. Fortunately it is exceptionally rare.
Hug your partner and your kids.
Thank you for sharing what's been going on with you...
I'm a spiritual person, and the first thing I thought was that, the quick passing of many people means they'll get to be together sooner in the after. The other thing is, how I can only imagine what it must be like to have a family that shares the same impending condition. It must bring you all together in a special way that only you would really understand.
How are you holding up?
These things are awful. My cousin's family was struck with ALS. Grandmother got it and all 3 of her children (that lived to adulthood) got it. Their grandfather who lived to 100 had to experience his wife and all of his children die from it. Neither of my cousins choose to have children and I know they live with the cloud over their heads as they are getting to the age where it has manifested in their family. My thoughts definitely go out to you and your family with having to live with this.
So sorry to read about your family's tragedies and hardship isn't even the right word, Top.
It appears you have a positive attitude about the end of their suffering at the end of their life which is very commendable but I'm sorry you have to face this so much and so hard in your family.
Thoughts are with you.
Hang in there is all I've got.
Huntington's Chorea is a ****ing dreadful neuromuscular degenerative disease. My father died at the age of 50. He never knew what him him. Neither did we. (We found out in 2005 when my youngest sister was diagnosed. Because it is genetic, there was a 50/50 chance we all could get it. 6 kids, 3 have it. I do not. I got lucky) He died of cirrhosis of the liver. The booze did him in. His depression (a symptom of the disease) tormented him. What we suspected were the delirium tremors were in fact the movements associated with the disease. Had he not drank he would have died from the disease anyway.
Now my oldest brother's suffering is coming to an end. He was 6 foot 5, 250, Big strapping man. Now he's less than 150 pounds and ready to die. He's 65. He turns 66 in August, but he won't make it. I hope his suffering ends soon.
My youngest sister is a vegetable who hasn't been able to speak for two years. She is near death as well. If she makes it to August 5th, she will be 67. I am stunned she has lived with this disease as long as she has.
Just buried my oldest sister 6 months ago. She was 71. Oddly enough she tested negative for the disease. Dementia got her.
And my youngest brother just turned 63. I doubt he'll see 65 as he has the disease as well.
Now we worry about my sister's daughter and my brother's daughter. Neither has chosen to test. Tough choices there. Who wants to see that snow ball coming down the hill?
I have much to be thankful for however. Both my daughters will never get the disease nor could their children. Unless they marry someone with it. Fortunately it is exceptionally rare.
Hug your partner and your kids.
Sorry to hear about your situation.
Please accept my best wishes to you and your family, and I hope that you'll all find the inner strength to make it through these troubling times you've encountered.
I wish you and yours the best possible.
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