
Hal Finney diagnosed with ALS.  Wants to keep coding open source when paralyzed. - Eliezer
http://lesswrong.com/lw/1ab/dying_outside/
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Shooter
ALS is terrifying and brutal. The three letters still give me the shivers.
This guy has a very positive and brave outlook. I wish him the very best.

I was misdiagnosed with ALS by four different doctors. I had essentially _all_
of the symptoms, so for once I couldn't really fault the doctors. I was also
misdiagnosed with Parkinsons, MS, and Alzheimers earlier in the whole process
- based on brain lesions, tremors, memory loss, paralysis, etc. Misdiagnosis
of complex, multi-systemic diseases is much more common than one would expect.
I would encourage anyone diagnosed with any of these diseases to get a fast
second (or even fifth ;-) opinion before you start any treatments. Not to be
in total denial, of course, but because some treatments - if wrong - can
exacerbate the underlying problems. Steroids, for example, were prescribed for
me at one point and they nearly killed me.

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apu
If you don't mind me asking, what was the final diagnosis? How was it
discovered? And how are you coping?

~~~
Shooter
It's a long, complicated story...so even my abbreviated answer will be very
long. I'm going to make a new post about it, because I don't want to hijack
this thread.

<http://news.ycombinator.com/item?id=868325>

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robin_reala
My dad died of MND (ALS in the US) five years ago. He tried to keep on coding
with voice recognition software when his hands became too weak to use a
keyboard, but his productivity dropped to <10% of what it was before. I ended
up finishing his freelance projects off, and he never really used a computer
again. He’d always been a very active person, and balanced the mental rigour
of coding and database architecture with physical crafts: cooking, gardening,
building etc. Being stuck in a shell of a body was never going to be enough
for him unfortunately.

~~~
tezza
I'm sorry to hear of your father passing away.

Recently I have spent quite a lot of time with no right hand movement.

The impairment, pain was negligible compared to the frustration of performing
everything so much slower.

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cojadate
I starting reading that with the usual sense of horror I get when reading
about these kind of degenerative conditions and ended with a real sense of
admiration and awe at the guy's attitude.

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plinkplonk
Hal is a very brave man. Much respect.

I (just realized I) don't have that much courage. I'd probably kill myself
before it got unbearable.

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bmunro
You may also know ALS as Motor Neurone Disease (MND), particularly for those
of you outside of the USA.

It runs in my family.

~~~
dirtyaura
ALS run in my family too.

It gave me a new kind of importance and focus to living fulfilling happy life
instead of goofing around (although I see goofing as an integral part of human
life too) when I realized that there's a really high chance of getting ALS in
twenty years.

Hal's attitude is a really admirable. However, for me, one of the key
requirements of living in respirator is to ability to communicate with other
people. Is living worth of it, if you are not able to communicate with outside
world, and you know that you never will.

It's tough question, and in ALS, you have to make a decision when you still
are able to communicate, when you still can nod or move your finger to say
that I've had enough.

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antipax
Absolutely beautiful. I wish him the best of luck, and his optimism will
inspire me for months to come.

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nym
Wow.

