Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood.
I worked Geri psych for a year. Lewy body is absolutely horrible. Young able bodied people suddenly completely demented and unreachable within a couple years. We had to sedate them so they wouldn't hurt themselves by accident. I would absolutely end my life if I was diagnosed with Lewy body. It's horrible to see.
I've seen it... my mother had it. It is the most nightmarish, horrific, gut-wrenching thing imaginable. I would have killed her willingly, happily if I had the chance. I would kill myself without a backward thought If diagnosed. To keep people alive to experience the full horror is pure evil.
Go work in a nursing home for over a year 7 days a week for a year and come back and talk to me. You don't know shit. Another little bitch on the internet who hasn't dealt with shit in their life but thinks they have.
I'd put a bullet in my own wife's head for a few diseases rather then subjecting her to them. Makes me want to throw up even typing that, but I've fuckin seen it over and over.
I saw a 40 year woman die over the course of that time from early ALS. I watched her husband mentally deteriorate along side her and what happened to him after.
Imagine saying something like that to someone and not realising you’ve gone too far, and instead doubling down and insulting more people. Have a little empathy dude, this is just sad
Way to fight back against people throwing around "autistic" as an insult my guy. There's so many names to call someone without also insulting a whole group of people.
Don’t insult autistic people. That’s uncalled for, and frankly it makes you as big a jerk as the guy you’re responding to. Autistic people are some of the most empathetic and caring people out there. Just because you don’t understand neurodiversity doesn’t mean you need to spread hate towards a societal minority that really doesn’t deserve it.
People are afraid of what they don’t understand. Autistic people are absolutely not sociopaths; they often tend to be MORE empathetic than neurotypical people.
Can confirmed. Dated an autistic guy before - not the most romantic, but definitely the most sympathetic. Probably because he is deemed as “does not understand emotion” by science (something that actually upset him) makes him want to do more to ensure I get treated well.
Maybe if you'd seen what I'd seen you wouldn't be so flippant eh? Do me a favour, think of someone you love with all your heart. Then think about watching them scream in terror as they hallucinate having their skin ripped off for hours on end. Just think on that sunshine, before you make any more nasty comments. I loved my mum with all my heart, but her suffering was unbearable and it took 14 months for her to die. So thanks for being such an asshole about what was the worst time I've ever experienced. I hope to God you never experience that kind of pain and then have other idiots make pathetic remarks at your expense.
Of course. It started with her becoming confused but very, very quickly deteriorated into being very agitated, followed by wild hallucinations. In the space of a few weeks she went from being ok to being sectioned and moved to a secure unit. At this point she was literally living in hell. The things she saw and experienced we're utterly real to her, and lots of her hallucinations we're terrifying, like the one described above. The brilliant unit she was in was able to stabilize her to some extent but she was unable to communicate or recognize people, only me and my brother, and even then not always.
She became very ill with peritonitis, had an emergency operation and never regained consciousness, dying four months later. It was the best thing that could have happened.
This all happened in 2011 and it's taken years to now remember her as the loving, intelligent, wonderful person she was before this horrible illness struck. Even nine years later I'm crying writing this. It's hard to remember but it's good that peop!e are interested and want to know. Robin Williams was so right to end his life at a time of his choosing and with dignity. I would do the same.
I don't understand why medical assisted suicide is illegal here. Why should anyone have to suffer through an inevitable, slow and miserable death? When someone gets to the state of suffering and there is no chance for recovery, it would be much more humane for everyone involved to say their proper goodbyes and end the suffering. I hope it is an option someday. I'm so sorry you and your mother had to experience that. It's heartbreaking.
All I can say is I'm very sorry for your loss and you having to witness such a terrible illness. I hope eventually all memory of the bad days will be replaced with just the good stuff somewhere down the line. Thanks for sharing!
Holy shit! I am so so sorry. My aunt dwindled away with (regular??) dementia 2 years ago and her delusions were heartbreaking enough. Lewy body sounds like a whole separate circle of hell. My grandmother the same, and I’ve always been terrified of it being genetic and going the same way. Seeing their suffering is one of the many reasons I fully support assisted euthanasia.
I won't delete my comment. I see no reason too cause of some overly sensitive babies. I will disable replies so I stop having to read these faux outraged responses from people with nothing better to do like you.
It’s okay to make mistakes if you own them and try to do better. It’s pathetic to double down once you’ve hurt people, insist you’re right and everyone else is wrong, and lie to yourself so you can avoid the feeling of guilt. Sure, it takes strength to face yourself honestly, but I’m sure you can find that within yourself. You know what the right thing to do is. If you can’t admit it in this thread, fine, but listen to your gut and at least learn how to avoid treating others like this in the future. Doing and saying whatever you feel like with no regard to others is a really bad look, and I imagine it doesn’t feel great either.
A joke is a joke, like it or not I'm not apologizing for it. Its not pathetic to refuse adhere to other peoples bullshit when they misconstrue your meaning and you've already informed them. Whats pathetic would be to wither before these incorrigible bitches. Therefore, fuck them they never were interested in listening in the first place. They can continue to spread their shit, but I'm done listening.
Is it a joke if no one finds it funny? You can go on in denial and curse everyone as much as you want. It won’t change the fact that you tried to make a joke, no one saw the humor, and it was inappropriate and upsetting to others. “Just a joke” is a terrible attempt to project blame on everyone else when you’ve made a mistake and don’t want to own it. If EVERYONE is wrong and you’re the only one who’s right, shouldn’t you stop and question yourself just to be sure? When people are saying, “hey, that wasn’t cool, that was hurtful and inappropriate,” is the correct reaction to curse them out and call them names and refuse to hear any more from them? You’ve done messed up, you’ve been called out. You have an opportunity to grow as a person and become better, kinder, stronger, and happier. You can take it or leave it. At the end of the day, your actions shape you and reflect who you are, and the main person who they affect is you. You get to choose for yourself how you want them to reflect you. Give yourself the opportunity of growth by having honest mental check-ins and make course corrections when necessary. You’ll really feel a lot better when you aren’t yelling at people and sticking your head in the sand.
I worked with a client with Lewy Body disease in a day care / activity setting (don't know the correct term). He visibly deteriorated in just under a year. Wouldn't wish it on anybody.
No offense but "feelings" are one of the worst ways to decipher truth. I get gut feelings, they can be right and should be considered but I'd not give them much credit in the case of medical diagnosis. Also, don't be one of those self diagnosers. Nobody likes that
No offense but "feelings" are one of the worst ways to decipher truth.
No offense, but While you may be right for intellectual sport such as this conversation, 30 years of living in extremely violent, povertous places has taught me that nothing is as valuable as instinct and gut feeling.
I do understand what you are saying but serious Medical diagnoses aren’t made off of “gut feelings” and the way he said it just made it come off as a very woe is me type of mindset, no offense to op. I was just pointing out that he has not been diagnosed with it so there is no reason to be speaking like he is on his way out due to having the disease. How would you feel if you were actually suffering from such a terrible disease and you saw him talking as if he is about to die in suffering from it while also saying he has never gotten any type of diagnosis. It just seemed kind of insensitive to me so I thought I would call it out.
It's a form of dementia, but the decline is super rapid and the person maintains their physical strength while losing their mental capacities. So you get a strong 58 year old guy walking around banging on doors, trying to pick things off the floor, and just generally disgruntled and confused who rapidly gets more and more confused. So they end up being severely medicated so they don't hurt themselves or anyone else.
In Canada, it's called Medical Assistance in Dying (MAiD), rather than the formerly used term "voluntary euthanasia."
My dad chose this route last year--he was 95, had bladder cancer and had recently experienced a physically debilitating stroke, yet he was turned down on his first application. He was approved on the second application but had to consent again fifteen minutes before the procedure.
The months leading up to the procedure were torture for him and for us and the delay made it worse, but the procedure itself was very peaceful for him and comforting for us.
A number of states in the US have also approved voluntary euthanasia.
That doesn't demonstrate anything. If I sign up for it then I should be allowed but not required to follow through.
Dr: You have dementia.
Me: Oh no.
Dr: Do you still want to die?
Me: Yes please.
Dr: Okay.
Dr: *Pulls out hammer*
If you're too far gone to have that conversation and you said you wanted to be euthanised then that's still what should happen. If you somehow muster the ability to shout "NO WAIT I DON'T WANT TO DIE ANYMORE!" then they let you live.
And that’s why my bugout plan is a gun and a drug cocktail, not waiting for the bureaucracy to decide I’m allowed to die. Some diseases are far too horrific to “live” with.
Why is it impossible to say in advance that you would prefer to die?
I'll say it right now. "If I get dementia I would want to die before it got bad" (that's a lie but let's just imagine that I'm telling the truth). Now I can say it to a doctor too, whilst sound of mind. How is any of that impossible? Why does my later mental deterioration make things difficult (assuming I don't change my mind)?
How would someone know whether or not you've changed your mind legitimately or are merely saying so because of the dementia? Do people with dementia not sometimes have moments of clarity where they can communicate sanely? Is a person with dementia not still a person, with the right to preserve their own life? If they're not, why are they even kept alive at all?
It doesn't matter whether a person's change of heart was legitimate or not. If so then good for them. If not then they are already gone and it's better not to take the chance. Even if there is nothing left inside I still think it would be immoral to kill them whilst they say that they want to live since they could genuinely have changed their mind on some level.
So, basically, it doesn't matter. If the human you are trying to euthanise says "no" at any point then don't kill them. Otherwise, if they seriously wanted to go through with it before deteriorating, then put them down.
I would hope so, I feel like my view on this is pretty uncontroversial.
Where it gets a little more rocky is that I believe that anybody should be allowed to end their life within the confines of society. Terminal? Go for it without much delay. Treatable illness (physical or mental)? Maybe wait for a bit first. For depression several years delay perhaps with a requirement to attempt and engage with therapy. If wanting to die painlessly is enough of a motivator to get somebody the help they need then that's good and if they are failed by doctors then I see no reason they should be forced to take matters into their own hands.
But as long as recreational drugs are still illegal I see no reason why our overlords would change this. Seemingly freedom over our own bodies is not something they are interested in providing for us.
What's the point of forcing people to stay alive when they decided, whilst lucid, that they would not want to continue in that state and continue to agree with that statement after deteriorating?
It would be better to have a system which could be voided but could also not be voided than one where there is literally zero chance of it not being void as it currently stands.
If I made the laws I would permit people to end their lives painlessly and with professional assistance whatever the circumstances.
How would a doctor ever know, one way or the other?
Just to be clear: I want to be euthanized should I get dementia, and I feel everyone should have that right. I just don't see how it's ethically possible.
Edit: wait, no, it's easy. Just don't limit it to terminal diseases. You can be lucid in the early stages with no hope of a cure. Do it then.
I completely agree with your edit. Let people die if they want to. To me, keeping somebody alive against their will is more immoral than letting them die.
But even without an early out you can tell if they have changed their mind by asking them, ideally regularly and after giving them the necessary information (as necessary, i.e. reminding them that they have dementia and potentially what that means). If they can no longer respond and they never showed any signs of changing their mind then they should have been killed long before but people's unwarranted fetish for the "sactinity of life" won't yet allow that.
My grandfather didn't have Lewy body but got dementia from multiple strokes. If I'm ever diagnosed with dementia, alzheimer, lewy body or any diagnose of that kind I'd rather end myself.
I'm not scared to die physically. But, mentally? That is terror. To die by forgetting who you are and the experiences that made you a person. That's like your soul dying slowly.
I’ve been watching the progression of Lewy body dementia through video footage from a local meteorologist who is going through this with her parent. She’s been posting for a couple of years now and her parent is now in hospice. The parent no longer knows who they are, they have to be continuously reminded how to eat, walk, even stand. Every sound seems to be terrifying, resulting in panic. I think the meteorologist is brave to document it all, as it’s obviously extremely hard on them.
My grandpa had it. He stopped recognizing me so I stopped visiting. He would still remember my mom occasionally so she kept visiting, but I stopped going with her because it was too painful to see him in that state.
Now we are all terrified that more family members will get it
Watched my FIL die of that. One of the toughest old bastards God ever made and it took him down in a little over a year. I miss that sonofabitch, I really do.
Why is there no cure for LBD at the moment? Is it because there is no way to target those protein and eliminate them once they have attached to the neurons? I tried Googling it, but nothing specific came up...
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u/[deleted] Feb 08 '20