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My family is dying and there isn't a damned thing I can do about it.

Top Cat

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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.
 

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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?
 

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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?

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.
 
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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.
 

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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.
 

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Thanks Kobie. It is a wretched disease. I hope his children escape it if he has any.

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.
 

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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.
 

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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.
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!
 

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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?
 

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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.

Sounds like the community has rallied very nicely. There are walks in the Seattle area as well.

Typical onset is between 35 and 50. Although if you have a very high number of repeats of the gene, juvenile onset is possible and likely.

The testing decision is a very difficult one. My daughters, now 23 and 19, were 12 and 9 when we found out. I had no symptoms, so I decided not to test until they reached child bearing age.

My test was negative. So I was sparred as are my children.

The odd thing is, when I found out I was negative, I felt an enormous sense of relief for my children of course. But also an equally enormous sense of survivor guilt. To this day it is still there.
 

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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.

Thank you. And right back at you. Life can certainly throw some lemons your way. And the lemonade is what you do.
 

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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!


Yes we are. I am the youngest at 61. The hard part has been watching my siblings suffer so much for so many years. I get that they have at least had many years. But the quality for them hasn't been great. My youngest sister suffered severe bipolar onset in her early thirties. She was an amazing woman whose fall from grace was heartbreaking, sudden and devastating. Lost jobs (She was a nurse), divorce, countless incarcerations in mental hospitals, numerous suicide attempts. All seemingly out of nowhere. I was her caregiver for 15 years. It was really tough,

She was misdiagnosed for 25 years until a shrink at the VA hospital in Seattle got suspicious.

Once her diagnosis was in, the puzzles all fit. My dad, my aunts and uncles who never knew what him them. My grandfather.
 

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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.
 

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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.

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.
 

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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?

Yesterday my sister in law told me that the doctor said it's time for my brother's "final journey" to begin. Hospice has been called, so his death is near.

Hit me pretty hard. Even though I am happy that his suffering will be over soon. I am going to say my good byes with my daughters on Thursday. That will be a slice of hell I suspect. Writing this has helped in a small way. So thanks everyone.
 

Top Cat

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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.

Oh man ALS is so terrible. The worst. I know it could be much worse. But you just have to shake your head and look for the light.
 

Top Cat

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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.

Thanks. It all helps.
 

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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.

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.
 

Top Cat

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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.

Thank you.
 
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