ALS Sufferer Used Legs To Contribute Last Patch 222
krkhan writes "This is a little old, but seeing as it didn't make it onto Slashdot at the time, I think it deserves a headline now. Adrian Hands was suffering from ALS and had lost motor skills when he used his legs to type in Morse code and fix a 9-year-old bug in Gnome. The patch was submitted three days before he passed away."
Strange Disease (Score:5, Interesting)
My family and I took care of my father-in-law as he declined and eventually succumbed to ALS in 2004. Every tiny act was monumental, even going out and getting a haircut, or a shaving him, or eating.
I can tell you that motor is the ONLY thing that goes. Pain stays, mental function stays, it is a pretty hellish existance for the sufferer. And something they could do just fine today - gone tomorrow... no predictability to it. And then there are painful muscle spasms as things go wrong. until they finally aren't able to breathe any more and die. I'm glad the mentioned coder was able to find a way to keep going, and put their mark on things.
The main medication at the time (@ $900 a pill), only worked for 18 months at which point your symptoms would be identical to as if you didn't take it - so it slowed things down enough to buy you time to get your affairs in order, and then all the progression caught back up. I don't know about current meds.
What's bothered me is that there is VERY little understanding of the disease, and how you get it - there are risk factors (being in a war is one, so is eating bats in guam). The VA had a HUGE list of questions that sounded like they were just grasping at statistical straws.
Re:Strange Disease (Score:5, Interesting)
I can confirm this. My wife suffers from ALS, and every day is a struggle. Some days are better than others, but she's got the painful spasms every day.
I'm in awe that Adrian could do this in the final phases.
Re:The human spirit (Score:5, Interesting)
It's quite remarkable what people in this condition can accomplish.
Some years back I used to carpool with my father, a doctor. This meant each day I would go to the hospital after work and wait for him to finish making his rounds. But sometimes he would take me on his rounds if there was something he wanted me to see or someone he wanted me to meet.
One of the people I met this way was a man suffering from ALS. The only things he could move were his eyes and one toe. A sensor was fitted to that toe and hooked up to a microcomputer (a SWITZ system, I think - this was in the early 80s). Despite the crudeness of this setup, he was able to write scholarly papers and even a textbook in his field (geology).
Whenever I'm personally inconvenienced by some health issue or other, I often recall that meeting. And then I stop complaining abount my own lot in life.
Re:Dedication (Score:2, Interesting)
You DO realize that infants are, technically, human beings, right?
Only by arbitrary line-drawing is a Homo sapiens 10 months after conception more "human being" than the same 8 months after conception. And each will die without the support of a responsible older human. So, while you may respond with a religious argument that life is supremely important at conception and then gradually becomes less so as innocence is lost, recognise that there are different ways of identifying the needs of man.
Seems to me that "ignoring infant death" or "putting less [...] value" on them would sort of be at odds with the goal of developing "more love for man in general," then, wouldn't it?
The context "[...]" you conveniently initially read "emotionally charged". This means we don't get overtaken by think-of-the-sweet-baby mentality, ploughing inordinate effort into the welfare of the infant as if it is more deserving than existing humans.
Reducing infant mortality is often low-hanging fruit - proper nutrition, proper immunizations, proper sanitation, etc make for dramatic reductions in mortality rates.
Indeed. These policies aren't emotionally charged pandering to infant needs - they're rational constituents of a developed society, helping everyone and pretty much mastered in developed countries. (Though we're reversing the trend of good nutrition thanks to once again pandering to emotionally charged notions of freedom for the child - which comes down to freedom of the businessman to exploit the child and feed him crap.)
Curing cancer? Curing heart disease? Curing strokes? Pretty fucking complex, unless you've got a miracle cure in your back pocket that you haven't told us about.
Well, no - or straw man, rather. Preventing many cancers or detecting+treating them in early stages is technically fairly easy but requires channeling of resources. Similarly, the risk factors for early heart disease are well-known and, again, education and promoting a fit society will go a long way. To a more limited extent, same for strokes.
But we don't do this because, again, bullshit about "freedom" and "personal responsibility" prevails, weasel words in this context for the right for others to exploit your weaknesses in the short term at the expense of the welfare of man in the long term. It's not society's job to help you keep healthy, is it? Yes. Yes it is. Not from conception to the end of childhood (with an emphasis on infancy), but from conception to the grave.
Most poignant thing about it is (Score:2, Interesting)
It's appalling if he had to go to India for treatment because of intractability of the US healthcare system.