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."
Dedication (Score:5, Insightful)
You know what's important to someone when they continue to do it from their deathbed.
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Unfortunately it was in a version of gnome that is now EOL.
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Just as your children will (surprise) die one day.
Does it make the life worthless?
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You DO realize that infants are, technically, human beings, right?
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?
Reducing infant mortality is often low-hanging fruit - proper nutrition, proper immunizations, proper sanitation, etc make for dramatic reductions in mortality rates. Curing cancer? Curing heart
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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
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And I'm more bothered when I've forgotten to back up some piece of code I was working on for a month than the dozens of infants who die needlessly every minute.
Sometimes you don't need to be a doctor to diagnose someone's condition. You're a fucking psychopath.
If no one in the world were prepared to accept responsibility for new life, the human race would be dead in less than a hundred years, genius.
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foot paddles? (Score:2)
that picture of him in his chair working on the computer, I was hoping to see how he was managing to use his feet, but the picture didn't extend to his feet. any more descriptive pictures of the setup?
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Its actually a paddle to the right of his right knee. You can see it attached to a piece of PVC tubing under his desk
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Thats a catheter bag.
Morse catheter bag?
Re:foot paddles? (Score:4, Funny)
It only writes dot dash dash dot.
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Indeed. They used such a setup to write windows ME.
I don't know what to think (Score:4, Insightful)
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.
Re:I don't know what to think (Score:5, Insightful)
"I would hope that everyone would find something even more important to do during their last weeks than fix gnome bugs."
So you have a kind of objective standard about what's important and what it isn't that you want to share with us?
Re:I don't know what to think (Score:5, Insightful)
Re:I don't know what to think (Score:5, Insightful)
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Yeah, you are in such a bad state, that the problem with fucking is that you don't know if you are cumming or going! (With apologies to George Carlin)
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You keep making the same joke, and it's just not funny.
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Considering the version number though it gives a whole new meaning to the term EOL.
Important (Score:5, Insightful)
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.
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Or in a crueler interpretation, it might be a way to get your mind off things. At least one person I heard about became something of a workaholic during his divorce, coming home to his big old empty house was a big downer. A girl in her early 20s who learned she had six months to live quit her studies - what was the point? - and spent most of that drunk. If I had an imminent death hanging over me, I'd go crazy. Filling up your day with "normal" activity is a way to stay sane.
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I have submitted bug patches to Open Source projects before, and when you hit that submit button there is a sense of "there is one less problem in the world now".
I have the opposite feeling most times I hit the Submit button in a forum!
you're on the wrong website (Score:2)
play is nothing but work you enjoy doing
most people posting on this site understands what it means to hack/ program/ factor/ compile/ etc. out of sheer fun. to a lot of us, its pleasurable play. if you find computer development to be a dreary chore and nothing else, you need a new career, assuming you aren't already a surfer or dog walker who enjoys posting on slashdot for some reason
i completely understand what motivated adrian, and were a debilitating disease to claim my life, i'd be honored to stand in t
Bucket list (Score:3)
1 - Make love to wife: check
2 - Say goodbye to family: check
3 - Farewell party with close friends: check
4 - Give to charity: check
5 - Write memoirs: check
86 - Go to Disneyland: check
9032 - Fix Gnome bug: check
9033 - Make peace with Mother-in-Law:
The human spirit (Score:5, Insightful)
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.
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.
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>>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.
My great-grandfather used to suffer from terrible gout. According to my grandmother, whenever he was feeling sorry for himself, he'd go out to the sidewalk and stand there, edge digging right on the painful joint, until he saw someone more unfortunate than himself walk by.
Of course, that was around 1900, where people missing arms and legs were a bit
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A gift to the world (Score:5, Insightful)
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.
ALS (Score:5, Informative)
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There probably isn't such a thing as a truly good way to go, but there are degrees of suck. I can think of worse ways to go than ALS, but not many.
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>not a nice way to go.
Is there such a thing :-| ?
Painlessly while sleeping, for example. Many would argue that it's one of the nicest ways of going.
Motor Neurone is a particularly bad way. You slowly lose control over all your faculties until something like pneumonia or the common cold finally kills you. Your quality of life suffers a lot, you live for a while at a stage where you cant even feed yourself because you're unable to move a spoon from a bowl to your mouth.
Degenerative disorders are worse then car accidents IMHO, even though dying in a car accident would be pretty painful (most people die from blood loss or trauma IIRC) it's relatively qu
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Yes, there are. Lightning is good, if it's instantly fatal. A Mack truck can do a pretty quick job of it. If you happen to like skydiving, you could hope that you enjoy a nice long freefall, to be splatted instantly on your last jump. Then, there is drowning - it's really not bad at all - a brief struggle for air, then falling into lethargy, then sleep. Probably the easiest and best of all is to check out in the middle of a good night's sleep.
Personally, I hope to die at age 99, shot by a jealous husba
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As much as I'd like... (Score:2)
As much as I'd like to say something teary-eyed, all I can think of is:
"And this is just how day-to-day GNOME development looks like."
Mr. Hands (Score:5, Funny)
Re:Mr. Hands (Score:4, Funny)
And the GNOME logo is a foot...
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Well, that's better than calling him Trog.
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.
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Re:Strange Disease (Score:4)
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It's rough, I feel for you.
Make sure you take breaks away every now and then, that was always the hard part.
Do you have someone who can help? I'd be happy to help research nonprofits in your area that might offer day services to let you go out and recharge.
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To all three of you -- Gaygirlie, oakgrove, and bigattichouse --
Thank you very much, I appreciate the good wishes.
He knew more Morse than most... (Score:2)
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Yes, few of us know any punctuation beyond comma, period, and question mark. ('?' being used most often as a short hand for "duh... wha?? say again?") But the international Morse alphabet is still growing! Not that long ago, '@' was added so that you can send e-mail addresses with Morse code. And there are other variants, like Cyrillic Morse. I'm guessing he had an interface that accepted standard international Morse code with some extensions -- I'm not sure the '{' has a defined standard pattern, for
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Won't last long (Score:3, Funny)
The patch was reverted in Gnome 3 because someone found it useful.
That's amazing (Score:2)
Add Copy Image and Copy Path to clipboard function (Score:2)
Really? It took 9 years for someone to do this?
This is why people still believe in god (Score:2)
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He is in hacker heaven. Look around. I see are a ton of hackers paying him respect and being touched by his story, myself included. I'm pretty sure quite a few people will remember him for quite a while. If that's not life after death, I don't know what is.
Thanks for the commit and for the inspiration, Adrian Hands.
Learn Morse now... (Score:3)
... because you might need it later.
Gratuitous plug for a friend's CW site [lcwo.net]
Inspiring story! (Score:2)
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.
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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 mic
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They both had ALS yes; but 'retardation' in the medical community refers to a psychological problem (http://www.assessmentpsychology.com/iqclassifications.htm), and ALS evidently does not impede mental functioning.
Re:What is ALS!? (Score:5, Informative)
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.
Actually you'd be surprised how many people havent (Score:2)
She has ALS
What's that?
Amyotrophic Lateral Sclerosis
What's that?
Have you ever heard of Lou Gherig's disease?
Most people say oh that's horrible at this point. Actually in one case someone wasn't familiar with Lou Gherig's disease. (Admittedly that was understandable since the fellow was an immigrant. He was familiar
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Thanks for adding that. Having kids with issues in other areas (not motor neuron directly) I understand the need for clarity.
Cheers
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Ahhh, the brain's ok but my fingers get my mords wixed up. Thanks.
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Yes, but Google is also just a click or a shortcut away for the submitter/editor.
There are many acronyms with different meanings. Anyway, as this here clearly refers to Medicine [wikipedia.org]:
For /. as a news aggregator site (albeit for nerds), it would be nice to explain acronyms which are not commo
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I just did a quick Google search and found that alternate uses of ALS don't show up until the 8th link; the top 7 are all about Amyotrophic lateral sclerosis. Acronym overload is only a valid excuse when there isn't an overwhelming preference for one particular usage, or that this usage is not the overwhelming use case for that acronym. Since it is the most common use of the acronym, spelling it out is a bit
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Yes, but Google is also just a click or a shortcut away for the submitter/editor.
Disagree. /. is one of the few refuges I have in my life where I can read articles that don't treat me as if I'm in 3rd grade. Seeing ALS not spelled out is refreshing and very welcome. Honestly, it is your fault if you have not heard of ALS. It is in the news quite a bit, and on human interest stories, health stories, on Jeopardy, in film, etc. It is not uncommon. Please don't defend the dumbing down of /. because you elect not to read the newspaper (or e-equivalent thereof.)
Re:What is ALS!? (Score:4, Informative)
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!"?
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Sigh... this is /., not the APA
LOL
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So you think that slashdot editors would rather send all of their readers to Google to search up cryptic abbreviations, rather than keep them here generating page views?
How curious.
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No but they don't assume we're stupid either. I'm just saying that just expanding the term would not have improved things. The description was brief, understandable and to the point. This isn't an academic journal and the readers multitask and side click all the time.... especially if they RTFA. This wasn't a hard one and the complainant was whinging. I did insult him, mildly, but not before I gave him the info he wanted. Doubt that he read it though as he was anon.
er... I think you're a li
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ROTFL
Mod parent +1 Funny.
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Personally, "Lou Gehrig's" is more recognizable than ALS.
The way I see it, ALS can stand for anything, but Lou Gehrig's is Lou Gehrig's. What the editor should have done (but didn't, not that I would expect as much) is put "Lou Gehrig's" in parenthesis after ALS.
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What do you mean, "you nerds"? This is news for nerds. Says so at the top (err...it used to). If you're not a nerd, what're you doing here?
not surprising (Score:2, Funny)
... the ticket was open for 9 years and the only person who managed to do it was someone who could barely move to even press the keys required to type up the patch.
That's why it took so long.
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Thanks for small mercies.
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It's an example. Not more important... just an example. If you'd like to contribute some other stories like this... feel free. Or, you could get that stick that's wedged in your butt removed. :)
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Having been beside a couple of folk as they declined and passed away, I would think that using the mind for something rewarding is not so bad. I hope his final moments were with someone who could comfort him so he was not alone.
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I hear your sentiment - but some of us would rather be alone. And, yes, like yourself, I've sat and held hands with a few who have died. The first was my Grandpa, and there have been a couple of complete strangers on the roadside after auto accidents. Mehhh. I'd rather just die alone, than to have some butt ugly dude like myself sitting there holding my hand while I die.
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I suppose... you certainly don't need someone crying. Having someone telling you "it's all right" and making comforting comments is probably better for most of us. Then again, in Canada we put our elderly on ice floes and release them to the sea to die.
http://en.wikipedia.org/wiki/Talking_to_Americans [wikipedia.org]
search for "ice floes"
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Hey - it doesn't have to be some great big fame and/or fortune thing. My mother in law only wanted to hold her great grandchildren, and to be able to change their diapers in her last days. All her life long, the woman all but worshipped babies, and the more closely they were related to her, the better. Whatever makes you happy works.
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Yeah, but the real money is in giving old men more hair and boners and reducing teenage acne.
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Mr. Hands had a serious disability, what's yours? ..oh, sorry, I didn't notice the big 'M' letter. Carry on.
And you're is prejudice. A most serious disability.
You're making me wish I never posted on this thread, although it netted me a +5 insightful I also have mod points, for which that little nugget would have earned you a -1 Troll.
Your comment was far more insulting then the GP, who was simply ignorant, you on the other hand are angry and spiteful.
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Re:Stephen Hawking Ruined it for Everybody (Score:5, Insightful)
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.
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I'm in competition with my self from a year ago. And yes, in a year, I will look back at this moment and probably be "losing" against my future self. But that's ok, I kinda hope I lose against my future self.