Slashdot Mirror
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.
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?
I work for the Department of Redundancy Department.
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.
Sheesh, would it have been too hard to spell out the acronym once?
Typical for you nerds. :(
Committed members like this, that sacrifice their time and effort, are what keep the open source movement alive and churning out functional code. So in the end, he left the world with a legacy of improving software for everyone else, doing what he loved, and cleaning up loose ends. Can't blame him at all.
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.
I'm not sure what's more amazing, how he wrote the patch or the fact that 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.
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."
45 5F E1 04 22 CA 29 C4 93 3F 95 05 2B 79 2A B2
Irony.
Thats because of nature of open source.
You really have to do it yourself, and not count on others.
Sometimes as a unexpected surprise some might help you, but don't count on that.
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.
This story of course. See, trolls aren't that bad after all
... 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.
I just can't post a goatse link in this post.... Don't have words to describe it.
It is touching that this man was able to carry on with things that were important to him despite the crippling effects of ALS. It seems that even near the end of his fight, he took joy from maintaining some normalcy in his life. He really wanted the world to treat him just the same as if he never had the disease - as a man with something positive to add (and the open source model helped make this possible). If it hadn't been for his son, we never would have known of his condition. I don't think Adrian Hands wanted special treatment or consideration from others. Your concerns are admirable, but I think if Mr. Hands were still alive, he wouldn't want to be coddled with kid gloves just because of what he was going through. So go ahead and post your goatse link, just like you would on any other thread. In a perverse way, he would have wanted you to.
Thanks for small mercies.
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.
Yeah, but the real money is in giving old men more hair and boners and reducing teenage acne.
This story actually made me stop and think about what I would do as I neared my last moments and I frankly can't think of a single thing I am quite that passionate about. Just crazy. And kind of awesome.
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.
I for one didn't even know you could enter non alphanumeric characters in Morse code. I wouldn't even begin to know how to even do a CR/LF in Morse, for that matter.
Damn_registrars has no butt-hole. Damn_registrars has no use for a butt-hole.
One of the best stories I have read on this site so far. As one of the previous posters said, it's all about the human spirit. May he rest in peace.
And fixing one, often means you need more drugs to fix the other... http://science.slashdot.org/story/11/04/09/0151206/Mercks-Drug-Propecia-Linked-To-Sexual-Dysfunction Doh!
Mr. Hands had a serious disability, what's yours? ..oh, sorry, I didn't notice the big 'M' letter. Carry on.
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.
"Windows is like the faint smell of piss in a subway: it's there, and there's nothing you can do about it." - Charlie Br
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.
"Windows is like the faint smell of piss in a subway: it's there, and there's nothing you can do about it." - Charlie Br
Adrian Hands and his family are a great example of why free software is a better way to celebrate and promote human achievement. Beyond the free access and the practical benefits, in the end, the most important thing is the development of community and freedom to participate and engage with making the world a better place. The freedom to pursue what you love, including solving small problems one at a time, to relentlessly make computers better for people with disabilities. The freedom to develop the skills and initiative to hack together devices that let people write software with their knees.
The most important qualities of free software and hacking ideologies are sometimes forgotten by their own communities and it always is hard to communicate them to others. This seems a good indication of just how sick and dehumanizing the "regular way" of doing things really is and how important it is to continue to reach out and demonstrate the beauty of hacking and free software, starting with just doing what you love.
This isn't touching at all. People do this all the time. Just cause it was gnome it's more important? Who cares.
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
search for "ice floes"
It must be a miserable life you live.
People use their feet to code in Morse while being a few days away from death all the time? In what world?
The patch was reverted in Gnome 3 because someone found it useful.
Dewey, what part of this looks like authorities should be involved?
That he could do that. Of course ALS sucks. (Which I would be familiar with since I took care of my mom when she was dying of it.)
Did you know 80 to 90% of the moderators on slashdot wouldn't recognize a troll even if one dragged them under a bridge.
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 with Stephen Hawking though so I mentioned it was the disease he had although I'm not sure if that's technically correct.)
Did you know 80 to 90% of the moderators on slashdot wouldn't recognize a troll even if one dragged them under a bridge.
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. :)
It's the Stay-Puft Marshmallow Man.
Really? It took 9 years for someone to do this?
"I believe in Karma. That means I can do bad things to people all day long and I assume they deserve it." : Dogbert
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.
Where else could be be but hacker heaven?
... because you might need it later.
Gratuitous plug for a friend's CW site
Wow, what an inspiring story! Someone who worked to help others, to the very end. My congrats to him, and my condolences to his family.
- David A. Wheeler (see my Secure Programming HOWTO)
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.
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
Ahhh, the brain's ok but my fingers get my mords wixed up. Thanks.
It's appalling if he had to go to India for treatment because of intractability of the US healthcare system.
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 this great man's company and leave this world playing (not working) the same way
there's that famous dylan thomas poem with that line "rage, rage against the dying of the light." it is a completely valid rage in the face of death to do what in a year of your healthy life you would consider routine: "take that ALS, i'm going carry on, as if you never touched me." a nice assertive middle finger at ALS, good for him! that's the way a strong man leaves this world
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
Yours is clearly a total lack of a sense of humour.
Hawking was diagnosed with ALS before motor neuron disease names became more distinct. Today, what he has is called Spinal Muscular Atrophy, stage 4. ALS is a disease of both the upper (brain into spine) and lower (spine to muscles) nerves. SMA is a purely lower motor neuron disease. The opposite is Primary Lateral Sclerosis, a motor neuron disease of just the uppers. We MNDers stick together, so he's still in our club.
Thanks for adding that. Having kids with issues in other areas (not motor neuron directly) I understand the need for clarity.
Cheers
Thank you for the suggestions, I'll check in to the links you've posted. I have a pretty good vitamin regimen and monitor my metabolic levels pretty closely due to a parathyroid problem a few years ago. My friend is pretty far gone, I'm sure they've checked in to things like this. He was on an experimental drug trial where they tested a drug used for Alzheimer's, the trial was successful, but in this case success just delays the inevitable. I don't remember what they monitor to determine the advancement of the condition, T levels or something, and the Alzheimer's drug did improve the levels but it isn't a cure.
In my case, while I maintain treatment I have reasonable immune response to infection after having pneumonia 4 or 5 times over a six month period 2+ years ago. CVID is not rapidly degenerative, but it's likely to knock a decade or so off my life, and as I'm in an NIH study program, I'm monitored pretty closely. The main problem for me aside from the discomfort and inconvenience of the treatment is the cost: if we didn't have health insurance, the treatment would run more than $5,000 a month and would obviously be unaffordable.
When you sympathize with stupidity, you start thinking like an idiot.
Sadly, his bucket list remained unfinished...
...
...
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:
When our name is on the back of your car, we're behind you all the way!
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.
Calling someone a "hater" only means you can not rationally rebut their argument.
the commit was made in December last year; it's in EoG 3.0. I doubt it was backported to the 2.x series, and I'm pretty sure it won't be backported to version 2.23.0, which was the first release in the 2.23 development cycle - which happened 2 and a half years ago.
You can save space. Or you can save time. Don't ever count on saving both at once. -- First Law of Algorithmic Analisys
It's dumb to call it ALS. People are much better at recognizing people than acronyms.
That is just plain lazy, It really doesn't take that much effort to type "als define" into Google to get a useful response in the first two results. You don't even have to use the "shift" key.
Thanks for the reply. Putting in VItamin D and CVID into Google gets me this as a top result:
http://www.ncbi.nlm.nih.gov/pubmed/18451650
"Patients with CVID may present asymptomatic vitamin D deficiency. Vitamin D and VDRs play an important role in the innate immune system and modulate Toll-like receptor-related responses. Delay in diagnosis may predispose these patients not only to irreparable bone loss but also to infections, and autoimmune and malignant disorders, thus emphasizing the importance of prompt intervention."
As a start, be sure to get your Vitamin D level checked, and get the actual number, and compare it against these two suggestions (the 40-60 ng/mL range):
http://www.grassrootshealth.net/
http://www.vitamindcouncil.org/treatment.shtml
http://www.heartscanblog.org/2009/01/why-rda-for-vitamin-d.html
A slightly lower target:
http://www.drfuhrman.com/library/vitamin_D_recommendations.aspx
Basically, your immune system needs vitamin D to "trigger and arm" the immune system:
http://www.telegraph.co.uk/health/healthnews/7379094/Vitamin-D-triggers-and-arms-the-immune-system.html
But, it also needs vitamin D to shut down an excessive immune response too (thus it can be involved in both too little and too much immune response). More on that:
http://www.vitamindcouncil.org/newsletter/h1n1-flu-and-vitamin-d.shtml
And of course you need the basic phytonutrients from plants (many as yet undiscovered) for your body to be at its best.
Anyway, your health may well involve other issues. Still, what people often call "genetic" is really an issue of how genes interact with an environment (including what we eat and how much sunlight we get) and if we can change the environment, sometimes we can keep our weak links from ever being exposed (Dr. Fuhrman says that in his book "Eat to Live").
If I said anything helpful to you, I'm glad, and you can pay me back by helping someone else with such information or something else someday. :-)
A 21st century issue: the irony of technologies of abundance in the hands of those still thinking in terms of scarcity.