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The terrorist inside my husband's brain

m.neurology.org

41–50 of 153 posts

Re: The terrorist inside my husband's brain

#41
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.

What you call a complicated system is trivially easy compared to the complexity of the human body. The truth of the matter is that humans alone are simply not good at this. There is way too much information that needs to be considered both about the individual patient as well as medical knowledge of diseases.

What is necessary is to force the medical community to build up better tools for medical diagnostics and the storage and exchange of patient health information.

Re: The terrorist inside my husband's brain

#43
post #39
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",…

"the sad Zeitgeist of our time notwithstanding" This sounds like one of those sentences that sound deep but don't mean anything. Can you explain?

"Even though it seems that words have diminished meaning in our modern society." Or something like that.

Re: The terrorist inside my husband's brain

#44
post #22

> 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?

I would fully expect myself to have convinced myself that I am not experiencing hallucinations - particularly because hallucinations are often incredibly minor.

I am also very mindful about the dangers of telling people things that will alter how they interact with you.

Combining these I find it likely that there be a very high bar for knowing something like that - especially as it is likely a personal suspicion. Not all doctors qualify as over this bar.

Of course I would actively seek a doctor I was comfortable disclosing everything to, yet I understand a reluctance to do so.

Re: The terrorist inside my husband's brain

#45
post #28
post #27

Earlier quoted context omitted.

I think many people envision hallucinations as these grand visions - like an LSD trip or something. So, when they wonder, 'am I having hallucinations?' the answer to them is clearly no. Hallucinations can be as minor as seeing unexpected movement out of one's peripheral vision. It's can be occasionally seeing shadows that initially appear to be something else. Because those types of things seem relatively minor, peop…

Right. My wife sometimes has auditory and occasionally the sorts of visual hallucinations you mention. I suspected it for some years but never asked her. She finally told me about it a few years ago. I've known her since the '70s. It's not an easy thing to discuss with people. There has to be a lot of trust that, even if this person I tell thinks I'm crazy, they won't ditch me because of it.

This is one thing that's certainly an issue but another is that people's idea of what a hallucination is being shaped by movies and tv. So people end up having this idea of what hallucinations are that has nothing to do with reality and so naturally when they do have hallucinations, it makes far more sense to dismiss them as optical illusions, weird lightning, a noise coming from the neighbor and stuff like that.

Re: The terrorist inside my husband's brain

#46
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",…

You are sadly witnessing one of the darkest consequences of 9/11.

It was such traumatic event for the entire society, due to its stark reminder that we weren't safe, and the modern world hadn't solved every problem, after decades of comfort.

There's a feedback cycle of increased fear, leading to unrealistic demands to fix it, leading to "solutions" that are immensely amplified by the media, and the politician's justifications of the solutions. That leads to increased fear...ad nauseum, to the point that you could credibly do a "Exisentially frightening" find and replace for every instance of "terrorism" and "Exisentially frightening (noun)" for terrorist. They're increasingly synonymous, and terrorist is the one losing definitive meaning.

I don't blame politics for this. We elect them by popular vote, and don't usually reward them for giving us a stern talking to, rather than addressing our exisential fears. But, they could have avoided the types of solutions they've trumpeted. Solutions that killed tens of thousands of Americans and foreigners, altered the way we live, and wasted trillions of dollars that should have been spent lifting ourselves up.

The terrorists won. They've done exactly what we know they wanted: create vast fear in the populace, and impose high economic costs, with relatively small acts committed by madmen.

Hopefully we start choosing more reasonable solutions, responsibly fund the ones we've found (the TSA caused multi-day delays in major cities this summer), and stop demanding the impossible from our politicians. Popular opinion about Middle East military action is tortured logic. You can't be mad about Iraq, Libya, and Syria. They express the full spectrum of action we can take — at least, as far as the general public perceives it. There's interesting distinctions, but few are well-informed enough to have that be informing their opinion.

Re: The terrorist inside my husband's brain

#47
post #39
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",…

"the sad Zeitgeist of our time notwithstanding" This sounds like one of those sentences that sound deep but don't mean anything. Can you explain?

Despite the Zeitgeist [1] of naming things after war or terrorism [2] hopefully words still have meaning [3].

[1]: spirit of the times/current fashion/popular tendencies

[2]: which causes war/terrorism to lose meaning because it refers to everything

[3]: compare with [2]

Re: The terrorist inside my husband's brain

#48
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 degrees of skill in this regard, but so do programmers, and it's likely that a) "good" doctors would count this "debugging" as one of their most important skills and b) that Robin Williams had really good doctors.

These factors seem to make diagnostic medicine quite challenging:

* It's often impossible to gather the information you need to make a certain diagnosis without an endless series of tests that may be prohibitively expensive or dangerous to the patient's health themselves.

* Feedback to attempts to "probe" the problem e.g. trying a course of a certain medication may be very difficult to interpret because of delayed reaction, individually unique responses, and/or other external factors that make it difficult to attribute some observed effect to cause X.

* The patient is not getting any younger this whole time, and may become impatient with the process and accept an imperfect solution or simply not have enough time due to the progress of their illness for all avenues to be explored.

* Patients may deliberately hide some of their symptoms, e.g. the article's author's theory that her husband was keeping hallucinations secret.

Re: The terrorist inside my husband's brain

#49
post #39
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",…

"the sad Zeitgeist of our time notwithstanding" This sounds like one of those sentences that sound deep but don't mean anything. Can you explain?

I didn't mean to be pompous. My native tongue is German and I didn't know a better word than Zeitgeist for what I wanted to say.

I feel that language in general is being used in a different way today than even just a few years ago. Admittedly, I don't have objective measures for this but I know I am not alone in this assessment. Even the Economist recently ran a feature about this lamentable phenomenon.

Re: The terrorist inside my husband's brain

#50
post #45
post #28

Earlier quoted context omitted.

Right. My wife sometimes has auditory and occasionally the sorts of visual hallucinations you mention. I suspected it for some years but never asked her. She finally told me about it a few years ago. I've known her since the '70s. It's not an easy thing to discuss with people. There has to be a lot of trust that, even if this person I tell thinks I'm crazy, they won't ditch me because of it.

This is one thing that's certainly an issue but another is that people's idea of what a hallucination is being shaped by movies and tv. So people end up having this idea of what hallucinations are that has nothing to do with reality and so naturally when they do have hallucinations, it makes far more sense to dismiss them as optical illusions, weird lightning, a noise coming from the neighbor and stuff like that.

Now I am sometimes asked, "Did you hear that?" Sometimes yes, often no. The greatest relief she shows is when I tell her one of the cats jumped off something.
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