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Essay by Robin Williams's wife

MJ_Mac

Brilliant_Rock
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Joined
Nov 19, 2014
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602
Thank you for posting this. I read snippets of her essay in the news but to read the entire essay was absolutely gut wrenching.
 

missy

Super_Ideal_Rock
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Jun 8, 2008
Messages
46,126
Thank you for sharing this essay. It's terribly sad and I hope the field of Neurology can help find a cure for this disease.
So many awful diseases with no cure in sight. Such a tragic end to a life full of genius and talent and wonder. :cry:
RIP Robin Williams.
 

Tartansparkles

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Feb 23, 2017
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591
I realise this is an old post but I'm glad it popped up and for the opportunity to read the article.
 

chemgirl

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Sep 16, 2009
Messages
2,270
Also glad to see this article again.

I might have a very unpopular opinion on this, but I honestly think suicide was the best and most rational choice.

Every year his death is plastered all over social media and attributed to depression. He’s used as an example for mental health awareness and suicide prevention. It’s not a fair representation.

My grandfather died of LBD and it was absolutely horrible. He was constantly afraid and paranoid. He hallucinated. His motor function completely shut down.

Later I worked as a research assistant for the geriatric psychiatry department at a local psychiatric hospital. There were patients with LBD who were hospitalized under restraints for either attacking others or harming themselves. There was one patient who would be with us for a week, released, and then back the next day with another failed suicide attempt. He would explain his symptoms and you could see the absolute panic he was experiencing. During one of the interviews he told me there was someone in the room standing behind me with a knife. He rationally knew that wasn’t true, but he still saw it. He still felt that fear.

The decline is rapid. Imagine living in a horror movie with glimpses of normalcy. I started to feel disappointment every time that patient was readmitted. I was secretly hoping that the next time he’d be successful.

Robin Williams knew something was terribly wrong even without a definitive diagnosis. He asked his doctor if he could be schizophrenic. He was living in that world of hallucinations and raw fear. He chose to give his spouse a wonderful weekend and then end the nightmare. It was a healthy choice IMO.
 

missy

Super_Ideal_Rock
Premium
Joined
Jun 8, 2008
Messages
46,126
Also glad to see this article again.

I might have a very unpopular opinion on this, but I honestly think suicide was the best and most rational choice.

Every year his death is plastered all over social media and attributed to depression. He’s used as an example for mental health awareness and suicide prevention. It’s not a fair representation.

My grandfather died of LBD and it was absolutely horrible. He was constantly afraid and paranoid. He hallucinated. His motor function completely shut down.

Later I worked as a research assistant for the geriatric psychiatry department at a local psychiatric hospital. There were patients with LBD who were hospitalized under restraints for either attacking others or harming themselves. There was one patient who would be with us for a week, released, and then back the next day with another failed suicide attempt. He would explain his symptoms and you could see the absolute panic he was experiencing. During one of the interviews he told me there was someone in the room standing behind me with a knife. He rationally knew that wasn’t true, but he still saw it. He still felt that fear.

The decline is rapid. Imagine living in a horror movie with glimpses of normalcy. I started to feel disappointment every time that patient was readmitted. I was secretly hoping that the next time he’d be successful.

Robin Williams knew something was terribly wrong even without a definitive diagnosis. He asked his doctor if he could be schizophrenic. He was living in that world of hallucinations and raw fear. He chose to give his spouse a wonderful weekend and then end the nightmare. It was a healthy choice IMO.

I agree with you @chemgirl
It shouldn’t be life above all else. Living like that is truly a waking nightmare. I’m so sorry about your grandfather :(
 

lyra

Ideal_Rock
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Jul 13, 2007
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5,242
They think my FIL might have had LBD, but the family opted not to have an autopsy. They diagnosed him with a fast onset dementia, and it was very horrible to behold, and happened quickly. I didn't understand (still don't), how even taking heavy duty sedatives would not let him sleep. He needed 24 hour care, was defensive, and tried to leave the house at all hours. Just awful. He didn't really know what was happening, so he wouldn't have chosen to end his life. If I had the same thing, and an inkling of how to end things, I surely would. It's a terrible burden to put on others. There was no facility with an open space for my FIL and it was extremely traumatizing to everyone.
 

missy

Super_Ideal_Rock
Premium
Joined
Jun 8, 2008
Messages
46,126
They think my FIL might have had LBD, but the family opted not to have an autopsy. They diagnosed him with a fast onset dementia, and it was very horrible to behold, and happened quickly. I didn't understand (still don't), how even taking heavy duty sedatives would not let him sleep. He needed 24 hour care, was defensive, and tried to leave the house at all hours. Just awful. He didn't really know what was happening, so he wouldn't have chosen to end his life. If I had the same thing, and an inkling of how to end things, I surely would. It's a terrible burden to put on others. There was no facility with an open space for my FIL and it was extremely traumatizing to everyone.

I’m so sorry @lyra. :(
 

Made in London

Brilliant_Rock
Joined
Sep 11, 2020
Messages
562
What a wonderful & brave wife she was to Robin. Her essay was harrowing to read & yet full of courage & hope for future sufferers
 

chemgirl

Ideal_Rock
Joined
Sep 16, 2009
Messages
2,270
It seems like some people hide symptoms until there is significant disease, while others seek medical care early (not that it makes a difference with outcome).

My grandfather’s first obvious symptom was an extreme reaction to medication. He had bypass surgery and did not wake up from the anesthesia for almost a week. The doctors were baffled. When other symptoms arose the first theory was brain damage caused by this adverse reaction.

Then one day he nonchalantly picked up the car keys and said he was going to work. Except he was retired and his license was revoked pending cognitive testing. My grandmother tried to stop him and he knocked her over. She had to call her sons to come and help and he attacked them as well. He ended up hospitalized. We were still thinking brain damage at that point and my mother brought us to visit him. For whatever reason we were “safe” people and he explained the situation from his point of view.

He was living in a very disturbing world. His house wasn’t his house anymore, but a replica created by the government so they could experiment on him. My grandmother and his children had been replaced by government operatives in a method similar to Revenge of the Body Snatchers. The experiment was being run by a man in a suit. His body was that of a young man, but his face was old. He could also take people’s faces. He was always there watching. Grandpa couldn’t sleep at night because the man would stand at the end of his bed and keep him awake.

Whenever I visited we had perfectly pleasant conversations. He asked my mom about retirement, he knew that I was moving to go to University and went on an end of year trip to Paris. He asked all of the appropriate questions. He would not speak if my dad or grandmother were present. About a month into all of this he told us to stop visiting. The man was getting upset and he was going to hurt us if we kept coming. Maybe 2 months after that he started refusing all food and water. He would just yell poison over and over again. He had limited motor function at that point and he didn’t live much longer.

In contrast, that one patient knew his diagnosis, researched it, and made a conscious decision to end his life before he declined to a point where he couldn’t anymore. After the first failed attempt he was placed in a care facility. He was aware that he was experiencing symptoms of a disease, but because it affects the part of the brain where fight or flight takes place, he still experienced the paranoia and fear.

It’s truly a horrible disease.
 
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