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The terrorist inside my husband's brain

m.neurology.org

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Re: The terrorist inside my husband's brain

#101

Post by kefka »

HSO wrote: post #33

This is obviously painful for the family and the fans, and I hope my words are not taken in the wrong way. But I really wish Americans (and yes, I think it's mostly Americans who have this tendency) would choose their words more carefully. If I am not mistaken, we are talking about a disease . What makes the analogy to "terrorism" apt here? For a while, everything seemed to be a "war" ("war on drugs", "war on crime",…

My Gods, please accept my condolences.

When your husband, Robin Williams passed away, I mourned for him. I was only someone who greatly appreciated his humor and drama. As a personal mourning for someone whom affected me as a viewer, I watched "What Dreams May come"....

It is one of his saddest and yet most beautiful movies. I live with, and am married to someone with Bipolar disease. I am grateful and happy she accepted me, yet I know she has it. It's OK, as I shall be aside her. But I know she has had similar beliefs and impulses. And please, do not believe I'm comparing us two; I am not.

I can guarantee one thing; He won't be forgotten. I know how much he affected my life, in the humor, and the great joy of his films and comedies. His comedy was infections, in the most joyous way possible! I nary could stop laughing on his 2011 comedy he gave that was recorded by HBO! We had to stop the recording for a half-hour for us(not we-us!) to catch our breath! And eventually, we continued the insanely-funny comedy!

He was such a wonderful and amazing reporter... And yet when he passed, I mourned. I have only mourned for very few.... and yet when I didn't think I would mourn for someone whom I only knew through their acting, I did.

We lost someone very special to all of us. Whether it was through their comedy, their hilarity, through their drama, or through their serious drama; he was special to so many of us.

I do hope you not only survive, but greatly thrive! One of the things you can do is be yourself ! Don't forget that! You can also continue his legacy; do what you're doing right now and continue bringing the thought and reminder of this disease. It's not common yet, and still needs further advocacy. You're in a perfect area to bring this area of genetic/prion disease to light.

And, please don't forget yourself! Yes, Master Robin Williams (yes, a master, in the arts of Comedy, Drama, and Acting)was a great person who brought his laughter and commedia to all, but don't forget yourself.. You succeed him. Do the best you can do, in his name. It may not be commedia. If may not be acting. But that's OK. Do what you do the best!

May the deities he and you believe in bless you.

Re: The terrorist inside my husband's brain

#102

Post by texthompson »

usaphp wrote: post #22
Normal_gaussian wrote: post #13

> He never said he had hallucinations. [...] it became evident that most likely he did have hallucinations, but was keeping that to himself. I do not know if I would tell people about hallucinations. It is bad enough to be out of control of your function, but to have no trust in your experience is terrifying. I wouldn't be surprised if I convinced myself I didn't have them in order to feel in control.

What is the point then going to doctors searching for a reason of your problems if you don't even tell them truth about your symptoms?

It turns out that the people who need the most help might have a hard time telling doctors the truth about their symptoms for a variety of reasons. I think you're right that this would be better, but I think it would be really sad to avoid helping people just because they had problems with self-awareness and communication.

I might be wrong though. :)

Re: The terrorist inside my husband's brain

#103

Post by gravypod »

caconym_ wrote: post #48
guelo wrote: post #26

A common failing I've noticed in complicated multi-symptom diagnoses like this disease is that doctors tend to treat each symptom individually instead of trying to connect the dots of all the symptoms. As a programmer used to debugging complicated systems it makes no sense, my first inclination when multiple things popup at the same time is to look for the underlying root cause.

I think this sort of thinking involves a false equivalence between computer programs and the human body. Going out on a limb I'd say that debugging is a skill that's learned in practice, not taught, so if it was as easy to "debug" the human body as it is to debug a computer program, why would computer programmers be better at debugging in their domain then doctors are in theirs? Surely doctors would have varying degr…

One reason why we might be better at debugging is doctors are penalized for "fuck it, what happens if I do..." and we are not.

We get to mess with large permutations of different causes and effects, that we stimulate, in a short time while that would be unethical for medical professionals.

Re: The terrorist inside my husband's brain

#104

Post by [deleted] »

initram wrote: post #92
HSO wrote: post #33

This is obviously painful for the family and the fans, and I hope my words are not taken in the wrong way. But I really wish Americans (and yes, I think it's mostly Americans who have this tendency) would choose their words more carefully. If I am not mistaken, we are talking about a disease . What makes the analogy to "terrorism" apt here? For a while, everything seemed to be a "war" ("war on drugs", "war on crime",…

Have you ever lived with someone with a mental illness? I definitely see the relationship with terrorism. Terrorism thrives on fear - "will they attack today?", "Will they use some horrible method of attack?", "Will I be able to handle it?", etc. Living with someone with mental illness can strike fear into a person. "When I get home from work, will I get normal spouse, or lunatic spouse?", "Will I need to take my chi…

[deleted]

Re: The terrorist inside my husband's brain

#105

Post by zer00eyz »

dsego wrote: post #36
guelo wrote: post #26

A common failing I've noticed in complicated multi-symptom diagnoses like this disease is that doctors tend to treat each symptom individually instead of trying to connect the dots of all the symptoms. As a programmer used to debugging complicated systems it makes no sense, my first inclination when multiple things popup at the same time is to look for the underlying root cause.

I think the old "if all you have is a hammer.." applies here. My father is now being treated for dementia, unknown cause, but they suspect Alzheimer's. Several months ago he was hospitalised after a psychotic break. When he was being admitted, I told the psychiatrist about my late grandfather's dementia but it went unnoticed. After several months of antipsychotics (which did remove the delusions) and antidepressants…

First of all, sorry about your father. My comment that follows is in no way trying to diminish what you have been through. Please do not take it that way.

What your describing sounds a lot like team debugging and trouble shooting! Trial and error of a failed hypothesis, further testing when someone looks at the data with fresh eyes. Finally a solution, or in your case, clarity.

Re: The terrorist inside my husband's brain

#106

Post by tree_of_item »

KC8ZKF wrote: post #81
jhbadger wrote: post #78

Earlier quoted context omitted.

Except that cancer and infectious disease really are conflicts and invasions, no metaphors needed. At the cellular level you really do have cells killing cells based on recognition of whether they are not they are recognized as "self".

You are defending the metaphor by using metaphors based on the metaphor you are defending.

Recognizing self/other isn't a metaphor, cells really do that.

Re: The terrorist inside my husband's brain

#107

Post by narrator »

nradov wrote: post #88
narrator wrote: post #71

The problem with diseases like this is doctors having nothing to offer at all. A relative of mine had this condition and they had so much trust in their doctors. They'd go to the doctor regularly and every time the doctor tells them they're sick after giving them a few trivial tests, sends them home and sends them a bill. It's a real farce. They could try some radical therapy, like stem cells, but they don't. Instead…

What do you expect? Medical professionals are not witch doctors or snake oil scammers. The first rule is "do no harm". It would be wildly irresponsible to inject a patient with stem cells or whatever just for the sake of trying something. If there's a reason to suspect that stem cells might help then encourage them to conduct a properly controlled clinical trial. Many hospitals do have chaplains (priests and others)…

A good counterpoint to this is Banting and Best (https://www.nobelprize.org/educational/medicine/insulin/disc...). These guys back in the 20s discovered insulin and brought it to market and started using it on patients in widespread distribution in 3 years. As soon as they figured out it would work by injecting a dog, then themselves, then a patient they went into a children's hospital and started injecting kids with it who were in diabetic comas and they started waking up. These days their research would require multi-million dollar clinical trials and take 10 years or longer.

The point being, the drug testing process for terminal illnesses is very very slow. There are also drugs that show some efficacy in curing Parkinsons like Nilotinib, but they won't cure anyone who isn't getting it outside the system for at least another 10 years, even if it works perfectly. I think there should be some more risk tolerance and looser regulation for people with terminal illnesses as long as the research is done on a non-profit basis. Even if you had the cure for a terminal illness right now it wouldn't be on the market for 10 years and a lot of people would die needlessly because of that.

Re: The terrorist inside my husband's brain

#108

Post by brennebeck »

jacquesm wrote: post #15

Taking into account his profession you have to wonder to what extent he was shielding his loved ones from how bad it really was. Poor man.

This was one of my first thoughts - trying to imagine how he was really feeling while putting up a strong face for everyone, especially his wife.

Re: The terrorist inside my husband's brain

#109

Post by proksoup »

GrinningFool wrote: post #100
abecedarius wrote: post #90

Earlier quoted context omitted.

So Henry Thoreau and Richard Nixon were terrorists? I'd really prefer more specific (and disrespectful) terms like "violent troll". "Terrorist" helps feed the phenomenon it's naming.

I've often wondered what effect it would have if the media universally started referring to "suicide bombers" as "mentally imbalanced religious fanatics".

Like a world without lawyers, one shudders at the impossible dream.

http://vignette3.wikia.nocookie.net/simpsons/images/9/9b/Bes...

Can you imagine?

Re: The terrorist inside my husband's brain

#110

Post by [deleted] »

initram wrote: post #92
HSO wrote: post #33

This is obviously painful for the family and the fans, and I hope my words are not taken in the wrong way. But I really wish Americans (and yes, I think it's mostly Americans who have this tendency) would choose their words more carefully. If I am not mistaken, we are talking about a disease . What makes the analogy to "terrorism" apt here? For a while, everything seemed to be a "war" ("war on drugs", "war on crime",…

Have you ever lived with someone with a mental illness? I definitely see the relationship with terrorism. Terrorism thrives on fear - "will they attack today?", "Will they use some horrible method of attack?", "Will I be able to handle it?", etc. Living with someone with mental illness can strike fear into a person. "When I get home from work, will I get normal spouse, or lunatic spouse?", "Will I need to take my chi…

[deleted]
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