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ALS Sufferer Used Legs To Contribute Last Patch
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."
You know what's important to someone when they continue to do it from their deathbed.
On one hand, I find it awesome that even in that state he managed to do something that productive and leave one (more) lasting trace of himself. On the other hand... I would hope that everyone would find something even more important to do during their last weeks than fix gnome bugs.
All of us like to think that the latest ten-core Xeon or whatever is the neatest thing since sliced bread, but stories like this remind us of what we often forget: the human spirit is the greatest hack of all time.
The family is in grief right now, and my sympathies are with them: but I hope they also understand the beyond-epic level of respect we have for Adrian Hands, and how he demonstrated right until the very end what the hacker ethos is all about. May we all live up to that standard.
There are so many who benefit from the community, and so relatively few who give back. So many people claim some excuse to not contribute anything to anybody without getting paid.
Then there's this guy.
I am honored to have shared a planet with him.
You do not have a moral or legal right to do absolutely anything you want.
ALS is Amyotrophic lateral sclerosis http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis It's a form of motor neurone disease, not a nice way to go.
Calling someone a "hater" only means you can not rationally rebut their argument.
Irony.
ALS or Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease.
Quoting from Wikipedia
"[ALS] is a form of motor neuron disease caused by the degeneration of neurons located in the ventral horn of the spinal cord and the cortical neurons that provide their afferent input. The condition is often called Lou Gehrig's disease in North America, after the famous New York Yankees baseball player who was diagnosed with the disease in 1939. The disorder is characterized by rapidly progressive weakness, muscle atrophy and fasciculations, spasticity, dysarthria, dysphagia, and respiratory compromise. Sensory function generally is spared, as is autonomic, and oculomotor activity. ALS is a progressive,[1] fatal, neurodegenerative disease with most affected patients dying of respiratory compromise and pneumonia after 2 to 3 years; although occasional individuals have a more indolent course and survive for many years."
It isn't a computer techie nerd term, it is a medical term. ALS is in the news about as much as MS so I think most folk would reasonably conclude that anyone who crawls out of their personal rut now and then would have heard about it. Also, if you don't know what ALS is then the expansion probably would not help. At one time "Lou Gehrig's" would have been more common than ALS but I think it may be the other way around now.
Google is just a mouse click away.
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.
meh
Important is a relative term. It's different for everybody. If you're doing something you honestly love, that's not a bad way to spend your last few days.
Weaselmancer
rediculous.
What bar? This ain't a contest, there's always going to be someone who's better than you.
Personally, I think the only person you are in competition with is you yourself. Are you better than you were a year ago? Then you win.
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
Yes, it's easy to Google this term. Yes, the reader could have done a search. But writing style standards generally suggest that the abbreviation should be spelled out, then included parenthetically after the full spelling, for abbreviations.
If the editors could be bothered to, you know, edit things for clarity, they could have written:
"[...] Adrian Hands was suffering from Amyotrophic Lateral Sclerosis (ALS - also sometimes referred to as Lou Gehrig's Disease) and had lost motor skills..."
Look at it this way: if you're a writer, do you want people reading what you wrote, or do you want their focus taken away from your work when they start googling all the medical terms you use? If you don't care about the quality of the summaries, why don't we just turn Slashdot into a giant list of links, with helpful summaries such as "LOL COOL!"?
It only writes dot dash dash dot.
Switch back to Slashdot's D1 system.
ALS is incurable. We have a drug that extends life by about three months, but it costs about $1000 a month and had terrible side effects. We have some symptomatic treatment: antispastics, bipaps/ventilators, feeding tubes, etc, but that's it.
If you want anything beyond that, you need to try out unproven stuff. Some people go out of the country to take their chances with wild clinical trials or pure charlatans. It isn't the medical system's fault in this case - they have tried nearly everly legal drug in mice models. Nothing had budged anywhere.