Hal Finney diagnosed with ALS. Wants to keep coding open source when paralyzed.

http://lesswrong.com/lw/1ab/dying_outside/

by Eliezer • 17 years ago

67 12 17 years ago

Shooter2• 17 years ago

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.

apu• 17 years ago

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

Shooter2• 17 years ago

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

alexgartrell• 17 years ago

Agreed 100%. My grandma was "dying" for years before they decided that it wasn't actually ALS. Death Sentences are always worth repeal.

plinkplonk• 17 years ago

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.

cojadate• 17 years ago

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.

nym• 17 years ago

Wow.

bmunro• 17 years ago

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• 17 years ago

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.

antipax• 17 years ago

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

robin_reala• 17 years ago

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• 17 years ago

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.

Hal Finney diagnosed with ALS. Wants to keep coding open source when paralyzed.

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