Huntington's Disease and Suicide

[Jeff Higgins]

A dark day in our little community of PPOT today. On top of DavidI's tragic loss, I just learned that a childhood and lifelong friend just took her own life. 56 years old.

Mary came from a really, really schitty, dysfunctional household. My late mother, bless her heart, "adopted" Mary when she was about 13 or 14. While she didn't live in our house, she spent every waking moment there. She was terrified to go home to her own family. Not physically threatened level of terrified, just knowing there was nothing there for her.

He entire family had Huntington's Disease. Complications took both parents in their 50's, and one of her two sisters. Her other sister, and her brother, both took their own lives as well. Which, in the end, is apparently one of the better outcomes for anyone unlucky enough to have inherited Huntington's Disease.

It's 100% fatal. Death usually occurs less than 20 years after the onset of the first symptoms, which often go unnoticed. Children have a 50% chance of inheriting it from an affected parent. There is no cure, no stopping this thing. Reading up on its ever worsening affects, as one marches down its path, is horrifying. I had no idea just how bad this gets. It ravages the mind, a neurological disease of the worst kind. Apparently a good number afflicted with it choose to end it, while they still can.

I'm just glad to see that my mom was not around to see this. She was a saint, she gave Mary a life. She was a fixture in our household, essentially my "second sister", and I loved her like one. We all did. She blossomed and grew under my mom's strict German eye, as did the rest of us.

I have very mixed feelings. Unlike DavidI's situation, we all saw this coming, for many years. Mary was getting less and less functional all the time, ending up wheelchair bound and under constant care. She had reached the point where she often didn't recognize friends, was sometimes deathly afraid of them, and had no idea who or where she was. She was on a path towards a hospital bed and a ventilator.

I'm more at a "thank God she found a moment of clarity" stage of acceptance than in any real mourning. The mourning has taken place for years, as we watched her steady, irreversible decline. She's found her peace, on her terms. And we, her only real "family", have found it as well.

So, please, those of you so inclined - send your prayers DavidI's way. His circumstances are far, far different than ours. We find ourselves relieved as much as heartbroken. We had plenty of time to prepare.

My God, life is cruel sometimes.

[Por_sha911]

My condolences for the loss of someone who must have been like a sister to you. Prayers for all who are touched by this tragic part of life.

[herr_oberst]

It's very difficult to witness the long, slow decline of a loved one. My deepest condolences, may she rest in a well deserved peace.

[island911]

Life is messy. :-/

Messier for some than others.

Huntington's Disease sounds especially nasty. - just horrible.

condolences

[flatbutt]

That's just awful. So sorry to hear of this.

[oldE]

Many of us are able go through life without thinking just how lucky we are.
Don't forget to hug your loved ones.

Best
Les

[Reiver]

Losing someone dear....watching them decline cognitively or physically ...observing the change daily is one of the most painful events in life.

[HobieMarty]

So sorry for your loss, it takes a special person and family to take in a person from another family as their own, Mary was very fortunate to have your Mother and your family's Love in her life. She is now at peace.
Prayers and condolences to you and your family.

Sent from my SM-N950U using Tapatalk

[sc_rufctr]

I'm sorry for your loss Mr Jeff. Your mom did the best she could for this lady. Keep that in your heart.

All the best.

[gchappel]

I had a similar experience. My heart breaks for you.
Very good friends of the family 60 years ago when I was young.
The father had it. I was 10 and did not understand. He walked and lurched - he terrified me.
Two sons that were friends of mine. This was before genetic testing. One committed suicide when he was about 20.
Going through it now with a good friends wife with it- she is near the end.
Terrible terrible disease.
I would wonder why a god would make such a thing.
gary

[devodave]

Jeff,

So sorry for your loss. I offer my condolences and prayers to you and your family. It sounds like you and your family made her life livable, even if just for a short while.

[jyl]

I am very sorry, Jeff.

An ex-girlfriend, a lovely woman for whom I’ve carried a little torch all these decades, took her own life after battling ALS for many years. She wanted to leave while she still had herself. Your sister made the same choice.

[billybek]

One of my neighbors has Huntington's. Terrible disease.
He is on a new medication and his wife was saying that he is doing much better day to day.

Sorry to hear about your friend's passing, Jeff.

[LWJ]

Awful. So sorry for your loss.

[Bill Douglas]

Sorry Jeff and Sorry David. This is so hard to take. Soul destroying.

[Noah930]

So sorry for your loss. But she has someone to mourn her passing, which is the gift that your mom gave her.

[fintstone]

Huntington's is pretty terrible. I once worked with a woman that was married to a many with the disease. Many of the males in his family died miserably at young ages yet they had 5 or 6 kids (starting at a very young age), continuing even after he began showing symptoms. He deteriorated rather quickly. It was sad.

I never really understood why folks with such terrible hereditary diseases had children versus adoption. Especially many children. Maybe more welfare? They were not very well off financially and likely suffered greatly after he became very ill.

The last time I heard from/about them, they were on the news because one of their small children had drowned in the river behind the nicer rental home they had rented (they were distracted moving in). They had found a better place to live after receiving an insurance settlement. The mother had been injured by an automatic gate, trying to get one of her children from being entangled in it (she had not been watching her kids then either).

[Superman]

I guess I am glad and sorry for your experiences, Jeff. Sorry that your 'sister' suffered of course, and that she has passed. But glad to hear much of the experience was positive. You loved her and so did your mom. You had a good mom. I could tell that you did, just by knowing you.

Thank you for the story and sorry for your loss.

[Rawknees'Turbo]

Originally Posted by fintstone

Huntington's is pretty terrible. I once worked with a woman that was married to a many with the disease. Many of the males in his family died miserably at young ages yet they had 5 or 6 kids (starting at a very young age), continuing even after he began showing symptoms. He deteriorated rather quickly. It was sad.

I never really understood why folks with such terrible hereditary diseases had children versus adoption. Especially many children. Maybe more welfare? They were not very well off financially and likely suffered greatly after he became very ill.

The last time I heard from/about them, they were on the news because one of their small children had drowned in the river behind the nicer rental home they had rented (they were distracted moving in). They had found a better place to live after receiving an insurance settlement. The mother had been injured by an automatic gate, trying to get one of her children from being entangled in it (she had not been watching her kids then either).

I've had similar, if not more critical thoughts about folks that insist on having children when there is a likelihood that they will pass along some grave disease or disorder to them. Speaking of which, I had a female coworker friend, back when I was a teacher, that had inherited a genetic disorder from her mother, which causes cysts do develop within the kidneys and leads to eventual kidney failure (lots of pain and agony too, from the first onset of the cysts, often in late teens-early twenties); my friend did not want to pass that on any further so decided to be sterilized at a very early age to make certain she didn't. I thought that was very honorable.

[DonDavis]

Jeff, my friend. Thanks for bringing that here. You rock.

Many wishes of Peace and Strength.

And, damn, your Mom. So awesome.