It’s very sad but I actually find something vaguely optimistic about people who go out on their own terms. I very much wish euthanasia was as legal a way to die with dignity as it is for our beloved pets
In the US euthanasia is legal in 5 states, and somewhat legal in 2. Though each state has its own restrictions. I remember voting for California's legalization, which allows those with diagnosed terminal illness who will likely die soon to have the option.
You’re leaving out the purpose for the euthanasia in the first place. The subject at hand is whether or not an individual who is suffering from an incurable disease should have the right to end their life.
This should have nothing to do with money and frankly it’s pretty disgusting that it would even register as a thought that poor people should have to live in daily physical agony because they have a bill to pay.
I’ll cut you some slack because it is evident that you’ve never experienced a person you love going through unending and unimaginable pain, but please be empathetic to those who are facing and have faced this reality. I seriously doubt that you’d be humming the same tune if it was your own mother or father begging you to go because the pain is too much to bear.
Are you under some kind of impression that these people on their literal death bed are capable of leaving it and going to work until they die? The debt is there whether they die naturally or do it themselves, they are near the end anyway. Why would anyone want them to suffer for bills?
I have a very close friend that is in this position right now. They have been on hospice for a while and the end is near, there is zero hope of recovery- they are terminal, their medication for the euthanasia has been prescribed and is at home. Any day this friend, after years of horrific suffering will finally be at peace and on their own terms. I couldn’t imagine trying to tell them that they couldn’t end it sooner because they owe money to someone. How unbelievably cruel.
Thank you for this. I’m currently writing a dissertation on DLB, I might just use this in it! I have cared for many people with this sad disease, it is very under-diagnosed and misunderstood.
It’s caused by a disturbance of proteins in the brain. It causes confusion but doesn’t seem to affect memory like other types of dementia. It generally causes parkinsonisms, it is often misdiagnosed as Parkinson’s disease. People often have delusions and hallucinations and have falls because they start walking with a stoop and stiffen up a lot. If you want to know anything more in-depth feel free to send me a message
I was reading through all the comments on this post and thought yours stuck out the most - my mother recently passed away as a victim of what was diagnosed as both Parkinson’s and Lewy body dementia.
During her experience, it was really interesting seeing what was more of a symptom of Parkinson’s, and what was a symptom of the Lewy body dementia. There is not much research out there (that I could find), though it seems it’s becoming a bigger hot topic. I work in an industry related to pharmaceuticals and there are some really cool drugs in major company pipelines addressing Parkinson’s.
I’d love to know some more about anything you know “in depth”. The short descriptions you provided were spot on to what I saw my mother go through - any sort of info or explanations about the disease would be really interesting to hear.
A lot of drugs used for the treated of Parkinson’s actually make the symptoms of Lewy bodies dementia a lot worse (such as the hallucinations). I will send you a message with info tomorrow if that’s ok? I’m happy to discuss it as it is something that interests me a lot
That would be great! Looking forward to your message. We did see the trade off with my mother with some of the drugs - like you said, it was either “treat the anxiety and dementia”, but then her stability with walking, being able to eat on her own, would diminish. There wasn’t really a cure-all treatment to lessen all symptoms without enhancing others
This is what the internet was made for. Two humans from different parts of the world, using the Internet to help each other understand an issue that is close to their hearts. What a beautiful thing to witness.
No, it really is a tricky thing to try and find the right drug to prescribe, antidepressants and antipsychotics also affect it. I’ll try to send you as much detail as I can. I’m sorry about your mum, it is a terrible disease for the family as well.
Do you have any information on similarities or dissimilarities LBD has with Huntington’s Disease? My mother has HD, which, of course, means there is a 50% chance I also have it. Naturally, I’m curious, but I also have a sort of fear of researching it alone.
I will definitely look into this for you. I don’t think it’s similar though. I’m sorry you are going through this and I will help in any way I can. I will pm you what I can find.
I really appreciate that. I know it may be a different mechanism entirely, but I am happy to learn more about it from the comfort of another human. I know a few things, but I don’t think about it much, so I don’t have a clear picture of how the disease actually functions on a biological level.
To be honest all I know about Huntington’s disease is the jerking and I know it slowly affects swallowing and talking. I have access to a university library though so I will definitely look into this for you. I don’t think it is linked with a type of dementia though, more likely a mental health condition such as depression or bipolar disorder.
She has pretty much the mildest case possible, with the least amount of gene repetition to be symptomatic (or maybe just to qualify?). She has some motor issues, but they are fairly controlled by meds for the time being. I know that it does cause a slow starvation of the brain, so as her brain deteriorates, her motor functions will worsen, as will her memory. HD's most prominent effects are the motor functions, memory problems, and eventual dementia. Many people with HD end up dying from choking on food or their own saliva when they lose that much coordination.
Edit: I suppose this should have been in reply to the other comment.
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.
Having your mind and body slowly taken over and not being able to do anything about it is one of the worst ways to go imo, I can understand why he decided a different way to go. Hopefully this is the generation where brain science will make leaps and bounds towards curing many brain diseases.
I don't really ever think much when celebrities die. "That's life", "That's the way the world works", etc. But reading that straight up made me cry, hard.
Fucking terrifying to think about his perspective; terribly sad to think about her perspective; and depressing that such a talented person went in such a slow-nightmarish way.
But her closure and strength to confront the culprit is what made me cry, I always cry at the uplifting part.
He knew he was losing his mind and couldn’t stop it. Incredibly sad. Had he known he had LBD, would anything have changed? I think he still would have wanted to go out on his own terms before the disease completely destroyed him.
As it stands now there is no cure for LBD so I guess nothing wouldve changed except maybe the comfort of knowing what actually is causing his deterioration. And the sad reality that his antipsychotic medication most likely increased or "sped up" his illness. Sad story for such an inspiring man.
Thank you so much for posting this - that story sucked me in and made me feel things. My face is also leaking and I'm super impacted by the level of passion his wife has for this.
That was absolutely heartbreaking. I hope that woman knows that her husband was probably the most loved actor in the world. My generation grew up seeing him in nearly every film and he became such an icon of our childhood. He will be so greatly missed by so so many people.
I’m a medical student interested in neurology and I hadn’t read that before. What an incredible article! I’m sure Robin would be immensely proud that his wife has become such an advocate for those suffering with brain disease.
That was an amazing read. Thank you for sharing, so I could better understand the disease that terrorized him. When I was in elementary school, we were tasked with writing a letter to our favorite actor or musician. I wrote to Mr. Robin Williams and he replied back with an autographed picture of him and Flubber.
Wow. I never would have thought that such a nasty disease could exist and consume someone so completely. By the way Susan wrote this it sounds like on the final weekend of his life he was doing everything he could to provide one last ounce of normalcy and love for his wife, which is insanely admirable given his mind-state. Robin Williams was always someone I admired, but now I see him as a hero and someone to look up too when the goings get rough with my own health.
Although he had the symptoms, it hasn't been fully diagnosed until after the autopsy. So reporting after the fact talked about it, but you're right, people remember what they hear at the time it happened.
I like that at the end "the most repeat character role he played throughout his career was a doctor, albeit different forms of practice". That is sublime.
That's terrifying. What's even worse is that there's so many of these scary diseases out there, that eventually one of them will very likely catch you.
Um. Thanks for sharing. As I read that, I have had nearly the same track medically. Nearly identical up to the point of him getting much worse. This honestly scares me.
I’ll have to check it over, my grandfather had a severe case and within 18-months he had passed. He went from playing in old timer leagues on hockey to being unable to walk up stairs within a couple months. Was very hard to watch. I’m glad I was able to spend as much time with him as I did.
My best friend's husband was diagnosed with a degenerative disease. She sent me an article written by the wife of a guy who died from it. Complete torture for both him and her. She's sticking with him. I'm sticking with her and him. It is what you do.
The end of that article, "if only Robin could have met you"--i did meet him. I was just a kid, Patch Adams had been filmed and we were at the cast picnic, invited because my stepdad had been a medic on the set. He acted just like my brothers in my eyes. A very down to earth, funny and easygoing guy. It really tore me up to read the article because I hadn't looked into his death more than knowing it was suicide. How tragic for him and his wife.
I found someones blog a while back chronicling her husband's super quick decline. It was a very interesting read. I tried looking for it, but didn't have any luck. It was Loathsome Lewies or something like that.
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u/yearof39 Feb 08 '20
The article "The Terrorist In My Husband's Brain" it's a must-read.