
The terrorist inside my husband's brain - technological
http://m.neurology.org/content/87/13/1308.full
======
snake117
I attended this years annual American Academy of Neurology meeting in
Vancouver and Susan Schneider Williams talked briefly at one of the plenary
sessions. Her speech was shorter than what was in this text and yet had a
similar message.

It was pleasant overall as it gave the plenary session that day a more humane
feel. It is very easy to get wrapped up in the biochemical underpinnings of
diseases and all the hype of the clinical trials being presented. We were
reminded briefly of how their is a person behind all those symptoms and how
the condition can affect the family as well.

------
medion
This piece was particularly haunting for me, having watched my father go
through almost the exact same thing, including the PD diagnosis, lots of
confusion about what was wrong with him, etc.

LBD is a horrific - the hallucinations are utterly terrifying to watch someone
go through. My father did not commit suicide, however I have often thought
that I wish he had, his decline has been so rapid and horrible - witnessing
his fear has been torturous - today he cannot move or talk, and is barely
conscious, it is simply a matter of time until something like pneumonia will
take his life. His symptoms started at age 58.

~~~
Grangar
I don't want to come across as crass, but have you considered euthanasia? My
father has lived through brain cancer for 9 years until he opted for that,
before that he was waiting for something like a heavy cold to take him. Thing
is, if you don't go outside the house anymore you have a very low chance of
getting sick.

~~~
medion
This is not a (legal) option where we live. He was also taken by the state and
is under the full control of the nursing home where he is in palliative care.

------
guelo
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.

~~~
im4w1l
Systems programmed by humans typically have coding standards. The human body
on the other hand has been haphazardly developed over billions of years by the
principle quick hack on top of quick hack on top of quick hack.

It's a complete mess of spaghetti code where anything that happens is the
result of dozens of sub-systems trying to invoke or override each other.

~~~
Cyph0n
And the origin of the original quick hack is still unknown because there was
no version control at the time of the Cambrian explosion.

------
HSO
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",
"war on bla"…). Now, everything that inflicts pain and trauma, it seems, is
"terrorism".

This may not be the right occasion to complain about this. But at the time of
reading, it is top of the list at HN and this kind of conflation really
bothers me. Words still have meaning, one would hope, the sad _Zeitgeist_ of
our time notwithstanding.

~~~
initram
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 children away from this situation, or will we have a nice
normal meal?", "Will I get fired for constantly having to leave work to deal
with this shit, or will it calm down for long enough that I can accomplish
some of my life goals?"

It can be very terrifying dealing with something like this, and frankly, I
find the metaphor extremely apt. I understand your distaste of how the word is
used in the media, but please understand that not all of us use these words
lightly. These diseases really can be _literally_ terrifying to the people
around the disabled. It can _literally_ feel like someone or something is
torturing your loved ones when you see what happens to them.

~~~
oska
Something that is terrifying is not the same as a terrorist.

A terrorist is someone who _deliberately and consciously_ seeks to create fear
and terror, usually for political ends.

A disease can not be a terrorist because it is not conscious and has no
political agenda (obviously).

~~~
intopieces
In the title, the author is using a metaphor, which is a figure of speech in
which a word or phrase is applied to an object or action to which it is not
literally applicable.

~~~
beowulf_cluster
And the contention here is that it's inappropriate (unless you mean to suggest
that diseases are sentient or otherwise capable of intention to foment terror)
and overplayed, and it ultimately corrodes the meaning of and devalues the
word.

------
Normal_gaussian
> 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.

~~~
usaphp
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?

~~~
Normal_gaussian
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.

------
davidhariri
When I heard Robin had passed I had assumed it was from depression, but what
does that even mean? This essay has really challenged me to go deeper on what
mental illness is- a disease just like cancer that has causes which can be
mechanical.

It's heart-breaking to think of a person with no way out of rapid decline
other than to check out early.

~~~
cloudjacker
It was widely reported that the "comedian" was "suffering from depression"

It fed into an existing trope and nobody was willing to have the conversation
that would challenge that, or if they did it was viewed as insensitive and
downvoted to the point of censorship

------
svag
I didn't know about the Lewy body disease, so here is a link to the Lewy body
dementia association [https://www.lbda.org/category/3437/what-is-
lbd.htm](https://www.lbda.org/category/3437/what-is-lbd.htm)

------
gilaniali
It is astounding that someone with the resources to pay for the best medical
care was unable to arrive at the correct diagnosis. As we move towards AI
assisted diagnoses, hopefully such suffering can be mitigated.

Do neurologists follow checklists when diagnosing symptoms? Will this case
change their procedures going forward?

~~~
bigtunacan
Speaking from personal experience (I suffer from a rare neuro-muscular)
disease. If you have a very common disease it is often somewhat quickly
diagnosed and treated. The less common the disease the longer it takes and the
more likelihood of early misdiagnosis.

Often times there are symptoms overlap. A patient may not display or disclose
the symptoms that makes it stand out from the others.

Many diseases are diagnosed by physical examination only as lab results can't
pinpoint many diseases. This makes it difficult as the doctors you are seeing
may not have any/enough experience with the disease to properly diagnose.

In my case it took over six years to get a correct diagnosis and treatment. My
doctor is quite humble which served me well as other doctors might have
misdiagnosed and treated me incorrectly. In my case the doctor said to me
after several months of testing and examinations, "There is clearly something
serious wrong with you, but I'm not smart enough to figure out what." After
that he became more of a puppet master sending me to different specialists
until finally, after 6 years I found one who was familiar with my illness.

~~~
zhs
Sorry to pry, but may I ask which neuro-muscular disease you're referring to?
A bit fascinated by the inability of many doctors to make proper diagnoses
when dealing with neurological issues.

~~~
bigtunacan
Stiff Person Syndrome.

It is extremely rare and occurs in only about 1 in 1 million people.

[https://en.m.wikipedia.org/wiki/Stiff_person_syndrome](https://en.m.wikipedia.org/wiki/Stiff_person_syndrome)

For this particular illness, 6 years is the average amount of time it takes to
diagnose. Just to help put it in perspective.

~~~
zhs
Thanks for indulging my curiosity, have heard of it believe it or not.

~~~
bigtunacan
No worries. It's no big secret for me. Most people don't know what it is; I
even got a blank stare from an ER doctor once when I was taken in during an
extremely bad episode.

------
narrator
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
they keep going to the doctor who is happy to take their money and tell them
there's nothing they can do.

I feel like the doctor should have a priest on staff to tell them to say their
hale mary's and douse them with holy water. At least it would partially
justify the cost of the visit.

~~~
nradov
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) on staff. Some patients
find them to be a great source of comfort.

~~~
narrator
A good counterpoint to this is Banting and Best
([https://www.nobelprize.org/educational/medicine/insulin/disc...](https://www.nobelprize.org/educational/medicine/insulin/discovery-
insulin.html)). 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.

------
j_koreth
Can mods change this mobile website link to
[http://neurology.org/content/87/13/1308.full](http://neurology.org/content/87/13/1308.full)?

------
dredmorbius
I'm seeing any number of themes in this piece that call out for discussion,
only a few of which are being picked up here.

 _Mental health, stigma, betrayal, and volition_

The whole nature of mental health and stimatisation runs deep in contemporary
society and this article. Even with acknowledged issues, Williams likely hid
the most troublesome symptom, hallucinations, from his wife and others.

Unlike physical disease or injury, which can be considered happening to us or
our containers -- bodies -- disease of the mind _fundamentally affects our
very ideas of identity and perception._ When a person's responses to the world
change, when their recollection of events turns unreliable, when their
response to the present becomes chaotic, when they themselves cannot trust the
messages of their own sense, you're diving into some very deep, dark waters.
Interacting with, caring for, and living with the mentally ill is
exceptionally taxing. Norms of social behavior fail to exist, and the least
interaction can become both a trial of comprehension and a battle of wills
(though not necessarily this). And patterns which were once firmly established
change, by the week, sometimes by the day or hour.

This is a reason that the role of primary caregiver is such a tremendously
challenging one.

The response of others, including medical professionals, is also taxing.
Normal expectations of volition and will simply do not apply. When there's an
organic, chemical, or pathological underpinning to behavior, it's not simply a
matter of "just try harder" or "you're smart and capable". To the point that
comments suggesting this themselves become tremendously painful.

 _Celebrities and disease_

For better or worse, a characteristic of fame and celebrity is that they focus
attention. Susan Schneider Williams's essay on her celebrity husban, Robin
Williams's encounter with a rare, difficult to diagnose, and profoundly

There's a tension at HN over whether or not authors or personalities matter,
are relevant, or should be disclosed. I feel rather strongly that they do. HN
management disagree. There's a recent discussion of that here:

[https://news.ycombinator.com/item?id=12573874](https://news.ycombinator.com/item?id=12573874)

The fact that this story concerns Robin Williams, famous and beloved comedian
and actor, is salient _if only because it means that he received care,
diagnostic, and autopsy attention that few other patients would receive._ If
_not_ for his fame and affluence, this would be just another tragic death,
likely by suicide and depression. Instead, we've a deeper understanding of the
real mechanisms at play.

The story has similarities to the Irvine "PTA mom" story -- a drugs bust
turned into a story of framing and false accusations. But for particulars of
place and social status, _that_ story could have had a very different ending.

[https://news.ycombinator.com/item?id=12616118](https://news.ycombinator.com/item?id=12616118)

 _Disease as metaphor_

The inability to rely on established norms, prior patterns, experiences, and
personality are where I see the titular concept coming into play. _The
condition here violates both the patient 's and the author's fundamental trust
in the Universe._ Robin Williams couldn't trust his own senses, and was,
literally losing that which was most central to any of us: his mind. Susan was
losing the friend, partner, and husband, to something she couldn't see,
couldn't name, didn't understand, and couldn't combat. I cannot think of a
better description of terror than that: to be threatened by an omnipresent,
invisible, awesomely powerful, and hugely destructive enemy, with no sense of
when or how it would strike next, and no effective means to defend against it.

 _Systems, understanding, and response_

There's a thread here about the failure of modern medicine, and perhaps the US
healthcare system specifically, to address sufficiently complex and systemic
conditions. Again I'm disappointed in much of the HN follow-up, which
incorrectly interprets the @guelo's comments as being specific to programming.
They are not.

The problem is a general one: our perceptions -- both our "five senses"[1] and
those extended through technically-mediated, extended, or created sensing
capabilities -- only inform us of _very_ topical conditions. It's up to the
diagnostician to draw deeper inferences.

As I commented on the linked thread, perversely, the deeper and more complex
our understanding and knowledge, the greater the tendency toward _non-
systemic_ thinking, or at least of creating a loose flying swarm of individual
specialist none of whom have a large-picture view. The roots are numerous
(taking a systemic view of non-systemic vision): education, specialisation,
compensation, healthcare administration, research, drugs and therapy
development, and more. The result is having to run rough herd over providers
to ensure that the full patient is being considered, not just some interesting
subsystem behavior.

[https://news.ycombinator.com/item?id=12620044](https://news.ycombinator.com/item?id=12620044)

 _Understanding vs. cure_

There is, finally, the problem that understanding is a _possible route_ to a
cure, but is neither sufficient nor necessary. There are treatments which have
worked without understanding (salycilic acid, from willow bark, against
headache, and citrus, against scurvy, as two historical examples), and there
are cases in which additional information remains stubbornly ineffective in
promulgating effective treatment.

A good friend of mine died some 25 years ago from a condition which was then
rare, poorly understood, difficult to diagnose, and stubbornly resistant to
treatment. A quarter century of medical advance has rewritten that sentence
only very slightly: the specific chromosomal nature of the condition is now
understood, and a genetic test could identify the gene transposition
triggering the condition (though not the triggers of that transposition, yet).
So to that extent, the condition is better understood.

It remains only poorly treatable, with many cases having a prognosis of 50% to
90% mortality, and the specific therapies date to the 1970s, 1960, and 1950s,
or before, with little if any change. One's views of medical advances can be
somewhat coloured by such experiences, and what I've observed is that much of
what's proclaimed to be improvements in medicine can be broken down two two
general mechanisms:

1\. Improvements in baseline medical care available to all.

2\. Specific and frequently very highly targeted advances. These can be
tremendously beneficial, within those narrow areas, but as with complex keys,
the locks fitted are frequently few in number.

There are exceptions and potential exceptions. Broad-spectrum antibiotics and
development of vaccinations both provided tools to address a wide range of
threats. Gene sequencing and synthesis, and stem cell treatments, offer some
promise of broad new areas of therapeutic mechanism. In large part though,
genetic medicine has been more diagnostic than therapeutic.

What understanding of mechanism _does_ allow though is twofold.

First, having a known enemy, one who can be faced and seen, removes a
significant element of the dread of the _unknown assailant_ , which can have
some comfort.[2] Even if the result is no net curative medical therapy, the
path becomes known, and perhaps mechanisms for symptomatic treatment or
palliative care.

The hope, of course, is that knowing _cause_ one may focus on _cure_ , or at
least, to borrow from the military metaphor, counterattack. That's not
certain, but it is a possibility.

Another element, tying in with the notion of systemic approach, above, is the
thought when faced with some set of phenomena, a complex of symptoms, of
considering "what is the possible common underlying element here?" Again,
treatment of independent symptoms by specialists tends to draw away from this,
but a reasonable thought, not just in medical circumstances, is: supposing we
_did_ have a deeper understanding of this, or more complete diagnostics, what
then could we do _or could we hope to achieve_?

________________________________

Notes:

1\. There are actually significantly more than five, though the convention
"five senses" of sight, hearing, smell, taste, and touch, persists. A good
general text on perceptual psychology makes fascinating reading.

2\. There's a surprisingly relevant concept from Adam Smith's _Wealth of
Nations_. Looking up his use of the workd "invisible", I found _two_ mentions.
One the greatly misrepresented "invisible hand". The other though refers to
the "invisible death" faced by combatants in modern (that is, gunpowder)
warfare:

*the noise of firearms, the smoke, and the invisible death to which every man feels himself every moment exposed as soon as he comes within cannon-shot, and frequently a long time before the battle can be well said to be engaged, must render it very difficult to maintain any considerable degree of this regularity, order, and prompt obedience, even in the beginning of a modern battle. In an ancient battle there was no noise but what arose from the human voice; there was no smoke, there was no invisible cause of wounds or death. Every man, till some mortal weapon actually did approach him, saw clearly that no such weapon was near him.... In these circumstances...it must have been a good deal less difficult to preserve some degree regularity and order."

Which is to say, Smith here is addressing specifically the terror of facing an
unseen, unpredictable, and deadly threat.

[https://en.m.wikisource.org/wiki/The_Wealth_of_Nations/Book_...](https://en.m.wikisource.org/wiki/The_Wealth_of_Nations/Book_V/Chapter_1)

------
ilaksh
This is a type of dementia, which is in fact an age-related disease. That is
not to say that getting old is the main cause, but aging is simply related.

I am convinced that the only truly effective way to tackle most age-related
disease (which includes most diseases that kill people) is by comprehensively
acting against fundamental aging mechanisms.

[http://www.sens.org/](http://www.sens.org/)

------
pm24601
I remember all the people ( looking at you Tony Robbins) who put RW's suicide
as some failing of character.

this should make it painfully clear to all those with opinions about others on
the internet to STFU

------
AustinG08
Big fan of the song Robin Williams by CeeLo Green

[https://www.youtube.com/watch?v=nfesrob8hW4](https://www.youtube.com/watch?v=nfesrob8hW4)

------
kposehn
Dupe of
[https://news.ycombinator.com/item?id=12616007](https://news.ycombinator.com/item?id=12616007)

------
jacquesm
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.

~~~
brennebeck
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.

------
gotts
This reminded me of a "My Beautiful Broken Brain" documentary.

------
amingilani
O Captain! my Captain! rise up and hear the bells; Rise up—for you the flag is
flung—for you the bugle trills

Seriously, 109 comments and no one said it?

------
stamm49
Sorry but a medical disease has nothing to do with "terrorism". Is this just a
way to grab headlines or clicks?

------
smoyer
There's a second posting of this link on the second page (at the moment) that
has the actual article's title - perhaps the discussion can be merged and the
title normalized.

[https://news.ycombinator.com/item?id=12617586](https://news.ycombinator.com/item?id=12617586)

~~~
Normal_gaussian
This title is more descriptive and the other, older, discussion has no
comments.

Merge may still be useful to remove other link.

~~~
wldcordeiro
The title here is editorialized, I'd prefer to keep her original title.

~~~
Normal_gaussian
Ah yes. Removing "Heartbreaking" is something I would agree with. However I
would not have read an article with the other title - it makes it seem like
more fluff about terrorists.

~~~
quickly
Yes, exactly. I would not have come across this had the editorialized title
not gained more traction.

------
Kenji
This is absolutely heartbreaking. Who is cutting onions here?

I think as time goes on, we will find more and more physiological sources for
severe mental health problems, and that is a great step towards proper
diagnosis and, hopefully, cure. Before reading this article, I thought he
'just' suffered from depression and thus a condition that cannot be diagnosed
physically.

~~~
theoh
As things stand, it's unhelpful to assert that there's a purely biological
cause for something like depression or schizophrenia. In fact we know that
life circumstances matter in triggering these conditions, and the more
honest/sensible psychiatrists use the umbrella term "biopsychosocial" which
conveys the systemic and interpersonal nature of the problem.

~~~
Kenji
_In fact we know that life circumstances matter in triggering these
conditions_

That doesn't mean it's not physiological in nature. Life circumstances can
trigger a heart attack.

I think it is not only honest but extremely helpful to search for
physiological signs.

------
rayne58
To make it a little more readable I drop this is on alot of websites just edit
the CSS and drop it on the bottom

body { margin:1em auto; max-width:40em; padding:0 .62em; font:1.2em/1.62em
sans-serif; } h1,h2,h3 { line-height:1.2em; }

~~~
lvs
It's because OP linked the mobile site version. Here is the journal's
formatted PDF:

[http://m.neurology.org/content/87/13/1308.full.pdf](http://m.neurology.org/content/87/13/1308.full.pdf)

------
dchuk
Haven't read the article, but the timing is interesting to me: I'm just
finishing my honeymoon, and our last waiter in Costa Rica looked and acted in
a way where I told my wife he seemed like a robin williams character...and
then I got really bummed out realizing we won't get any more of his characters
again.

Going to read this on the plane home.

