Dealing with Spasticity

Okay, here is my experience with and some solutions to the problem of spasticity, more commonly known as muscle cramping or charlie horses. Other than frozen shoulder syndrome and the recovery from various surgeries, this can be one of the few, albeit annoying, sources of pain suffered by ALS patients. If, like me, you're left in the dark by your neurologist, until it gets to the point where you need medical intervention, fear not, for there are some tricks you can use to make it bearable, or even pain free.

I'm part of the Keynote at Drupal Camp NYC 13

I have been invited to the wonderful opportunity to come speak as part of the keynote address for Drupal Camp NYC 13 this weekend. You should come too, at least if you're in New York, and you have an interest in Drupal, or just want a chance to watch me make a fool out of myself on stage.

I have been invited, presumably, because of my work with the Media project of Drupal. Although I would question their choice, as my work would not have been possible without the work of the giants on whose shoulders I stand, not to mention the work of countless other developers who have and continue to contribute to making the Media project as awesome as it is. I am, as the saying goes, but a drop.

But regardless of my thoughts on the matter, I'm the person they've chosen to come chew your ears for ten minutes on Saturday, July 13, in the evening, following Larry Garfield, one of those giants I mentioned. So please, come to Drupal Camp NYC 13, to experience what it means to be part of the Drupal community, to learn from some of the giants in some of the many offerings available in the sessions over the weekend, to help make history in one of the sprints following the camp, or just to hear an old fool pontificate because the organizers didn't know what they were getting themselves into.

By the way, I've been told that 100% of the proceeds from the camp after expenses will be donated to the Special Needs Trust that has been set up for my family and me, because of my ongoing struggles with Amyotrophic Lateral Sclerosis, otherwise known as ALS or Lou Gehrig's Disease. Just one more reason you need to be there. Plus, you'll get to hear me do my Stephen Hawking impersonation with the speech assist device I'll be using. Now if only they could make a speech-writing assist device...

Reddit AMA about ALS and Assistive Technology


On Tuesday, June 18, at one o'clock EDT, I will be on a panel for an Ask Me Anything (AMA) on Reddit - - The topic will be ALS and Assistive Technology.

So why should you attend?

First, it's only an hour or so, and it'll look better if more than one or two people show up. Besides, it'll be a great opportunity to spend your lunch hour with me. Being online simply makes it that more simple.

Next, if you have any pressing questions, such as how do you manage to write awesome modules for Drupal when your hands are completely useless, then this is your opportunity!

My qualifications: I was diagnosed with Lou Gehrig's Disease about two years ago, just before my newborn's first birthday. At first, my arms and hands were weak, so I purchased a magic touch pad and keyboard for the mac. By September, I needed to supplement this with Dragon Dictate (Naturally Speaking on the PC). This combination served me well until last year, when my hands became too weak to control the touch pad, so I began looking at eye gaze solutions.

The first iteration was a custom built eye gaze tracking system built by my father, from an open source concept over at . It was cumbersome and difficult to calibrate, however, so beyond a couple of proof of concept demonstrations, I didn't really use that much.

Then about July I got a head tracking piece of software for the Mac, which served me well for a few months. However, it was doomed from the start, as my neck strength was already failing.

So in September of last year, I finally got a Tobii PCEye, and used it to control the mouse, while I continued to use Dragon to dictate code and emails to the computer.

Finally, this January, my voice had degraded to such an extent that I gave up struggling to keep training and retraining Dragon, and now use the Tobii, in combination with Dasher, an open source word predictor for use with eye gaze systems, to control all aspects of the computer.

I'm planning to get a stand alone Tobii system next month, which will allow me to speak when I have lost that ability entirely, using my own voice banked with Model Talker, and have also begun a trial using a brain computer interface (BCI) for the possible loss of eye movement in the future.

By far the best thing I have done during the course of this debilitating illness has been to try to stay one step ahead, by training myself to use the next bit of software or hardware before I actually need it. I believe that where medicine has completely failed patients with ALS, technology has taken up the banner, and offers the only hope.

So join me Tuesday at 1:00 for an AMA on Reddit, to have a chance to chat with me live. I'll post the URL here and on Twitter: soon before the session starts.

Monday was my 46th birthday and likely my last. Anything awesome I should try after I die?

First, some background. My name is Aaron Winborn, and I am a developer for Drupal, which is an open source content management system, used to make web sites. I also the father of two young girls, who bring much joy into my life, and married to a beautiful woman. You may have heard of her, her name is Wonder Woman.

Just over two years ago, I was diagnosed with ALS, also known as Lou Gehrig's Disease. In short, that means that my mind will increasingly become trapped in my body as the motor neurons continue to die, and the muscles atrophy and waste away, until my diaphragm dies, bringing me with it.

My hands and arms are already completely paralyzed, and I'm confined to a power wheelchair. My diaphragm strength is largely diminished, and I am using breathing assistance 24/7, and I am at imminent risk for respiratory failure.

Even if I am fortunate enough to survive another year, which is only likely if I opt for a tracheostomy, my chances of surviving much longer become increasingly unlikely, as pneumonia becomes a specter haunting the late stages of ALS. There is no cure for this awful disease. My family gets to take care of all my needs and wipe the drool off my face, until I die, and leave them to pick up the pieces.

But yes, there is a silver lining to this all, such as it is. Kim Suozzi made a similar plea to the Internet a year ago today, and came up with the brilliant idea of freezing her body in the hopes of a distant advanced technology being able to revive her someday. Her body now rests at liquid nitrogen temperatures.

I approached the organization responsible for raising the funds to help her out, the Society for Venturism, last November, and they agreed to take on my case as well.

But I am actually telling you all this in order to come up with a sort of reverse bucket list.

I've had a full life, with no regrets. I've done some travel, have lived in some cool places, like the Netherlands and London. I've made lots of good friends, and continue to do so. I've contributed to my debt to society, working hard throughout my life, as a teacher, a waiter, an open source software developer. I've worked with a few interesting characters, like Elisabeth Kubler-Ross, and even lived in a Buddhist monastery before I met the woman of my dreams.

But I'm not ready to hang up my jacket quite yet.

When I was ten, I came up with three things that I wanted to be when I grew up: a teacher, a writer, and an astronaut. I've been two of the things, which is not bad. As an aside, I once told that to some people, and was asked, "Oh, what did you write?" To which I replied, "I didn't say I've written anything."

Joking aside, I'm looking for some grandiose ideas of things to do after I've died, and have hopefully been revived. And by that, I mean the sky's the limit. Don't worry about whether something seems technically feasible. This is your opportunity to think big. Like, go skinny dipping in the methane oceans of Neptune.

I want to do so much more with my life, but it's not in the cards this go around. I've become a spectator in life, living vicariously through my daughters, and relegated to typing with my eyes at fifteen words per minute on a good day.

But I'm not complaining. I awaken each morning as I always have, excited to take on the day. This is just a way to do some more brainstorming, to come up with a list of things to do during the next century, should we be so fortunate.

Stay strong,


PS This question was originally banned from the Internet at

I'm making a virtual appearance in Portland

I want to thank the good folks at ThinkShout and ZivTech for organizing the Drupal DoGooders Happy Hour to benefit my family and me, as well as giving people attending DrupalCon an opportunity to hang out and have some drinks. Even though I will not be in Portland this week, I plan to be present in spirit, beginning with a virtual appearance there. Join the crew this evening (May 20) at about 4:00 PDT to raise a glass in toast of doing Drupal Good and for a quick Q & A with me beginning about 4:30.

What a long strange trip it's been.

From Sunnyvale in 2007 when I conceived the Embedded Media Field module, to Boston DrupalCon in 2008, where I presented my first State of the Media session, to DC in 2009 where we launched the Media sprint supporting the Media suite of modules, to Chicago 2011 and Denver 2012.

These are the fun times that I recall fondly, doing good with my fellow cohorts. And by doing good, I mean really doing good things. Because where else in the business world can you spontaneously form a group of competitors, build something awesome, and give it freely to the rest of the world?

I'm really going to miss that this year. I mean that even though I continue to contribute to Drupal whatever and whenever I can, I am going to miss seeing you guys this year. There is a magic that happens when you get three or more Drupalers together in the same room. But circumstance has had its way with me these past two years and until we have a DrupalCon "Three Mile Island", I will have to be content with a virtual appearance.

So, join me on Monday evening to see my Stephen Hawking impersonation.

Wake Up Winborn

I just got an amazing email from AaronElBorg, a fellow Drupaler, father, and proponent of cryonics, who is also in the Seattle-based band, Glose.

AaronElBorg has placed a geas on me to remember that there is to be a song written in my honor called Wake Up Winborn, and in the ultimate treasure hunt, to look for it after my passing.

Now how cool is that? What an honor, to have a warrior's anthem written after your passing? With the challenge to find it afterwards?

Some may call it a fool's errand, and perhaps I am the fool, but I prefer the Tarot's version of the Fool, with one foot perched precariously off a ledge, ready for a journey of epic proportions, a dog nipping at his heels.

In any case, you'll most likely get to hear it before me. Eventually, I hope to be able to sit down with AaronElBorg and have a beer while we listen to the song, but a lot will need to happen before then. First, we'll need to sufficiently conquer or at least stave off physical death. For me to be able to take advantage of that will also require that we have found a way to reverse death, to the extent that we can repair any damage from the freezing process involved in my planned cryonic preservation. And we'll also need to have kicked the crap out of ALS. Alternatively, found a way to upload our consciousness to a computer or robot or some other containing form.

Tall order to say the least. But even before I can have the chance of partaking of this hypothetical revolution of medicine, we must raise the funds to freeze my body. That's where you come in. A journey of a thousand miles begins with a single step. And even though I can barely take a single step, I am doing my best to walk that long journey, but I need your help.

Please help-- your donation will be doubled with the matching grant posted by Longecity of a thousand dollars.

Thanks, and Rock On!

The Eight-Hundred Year Old Man

I was hanging out with my good friend Kevin Strawser the other night, and we got to talking about the recent news of the scientists at the University of Southern California who claim to have identified a way to allow humans to live for eight-hundred years or more. I'll just pause a moment to let you consider the vast implications of that finding, and we'll get back to that in a moment.

Wait, though. What do you mean, eight-hundred years? How do they intend to do that? What does that even mean, I have no frame of reference. Over my cold, dead body. And can I have fries with that?

These are some of the questions I hear rattling around out there, and I'll try to answer them in turn. The first question, the how, is a bit tricky to understand, and boils down to an arcane bit of genetic tomfoolery with some yeast. And before you shrug the whole thing off scoffing at that, just remember that there's not much difference between you and yeast at the DNA level.

It turns out that there are two genes hidden in the yeast that are common to all animals, and that includes you and me, folks, that are the lynchpin to the whole shebang: the first controls aging and the second bestows a susceptibility to cancer. It appears that with yeast that if you knock out those two genes, you increase their lifespan ten-fold. The really exciting thing is that in theory, we should see similar results after punching out the genes from fruit flies, mice, baboons, or any other laboratory animal, such as humans.

This is really exciting stuff, folks!

Okay, so what does this all mean? If you can live for eight-hundred years, what will that do to the job market?

That's an excellent question. Thanks for asking. I mentioned this whole thing to the aide who comes in the mornings to feed me, and her response was, "I hope they give me more hours in eight-hundred years." And that is a powerful reason that I can see being an argument against longevity at these scales. It's hard enough to live in abject poverty doing menial labor for eighty years, but when confronted with the prospect of increasing that tenfold, I think we'll see a rash of suicides, or at least a refusal to take the blue pill, which will arguably be the same thing in the end.

She also said that she was pretty certain that the technology would only be available to the rich and famous. I easily refuted that notion. Yes, perhaps initially after whatever hoops the drug manufacturer will have to jump through to get FDA approval, and any concerns of animal cruelty (I mean, as bad as you might think flipping burgers for eight-hundred years might be, imagine that long as a laboratory rat) they might get away with charging a hundred thousand a pop. But I guarantee you that once they wise up and realize the vast scale of economy at play here, as in a market demographic of in the neighborhood of oh, freaking everyone, you will be able to get your injection of gene therapy at your local CVS for $2.99.

Assuming China doesn't pounce on the opportunity first, and I'm rooting for some healthy competition in this arena, I suspect that we'll see this thing hit the grocery stores in about twelve years. And I expect that it will sneak up on you like your nine-year-old daughter's Dick Tracy iPod that's capable of video conferencing, texting, and phone calls, all without a plan. And even if you opt out, you'll have to do so knowing that she is opting in.

Alas, as excited as I am for this upcoming and inevitable potion of immortality, I am sitting here writing about it all with my eyes, trapped in this body with the life expectancy of a laboratory fruit fly. I used to think that I was born at just the right time in history to witness the end of senescence, but history is yet to have the last laugh. Even if this magic amulet of longevity were available tomorrow, it would be entirely useless to a patient of that harsh mistress, ALS, which accepts no quarter and offers no mercy.

Which brings me, finally, to the silver lining to all this. The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.

Hang on to your Bitcoins, we're in for a long and bumpy ride. And did I mention long?

Letter to a Patient Recently Diagnosed with ALS


Welcome to the stupid club. So you're at what, a month now? That sucks, my heart goes out to you and your family. I imagine the shock is over now, and you're probably slowly moving towards an acceptance. The first thing I want to say is that your neurologist doesn't know crap. Oh, he or she probably knows a lot about the mechanics of your disease, but what I mean is that they don't know diddly about anything important, from even what caused your neurons to begin to die off. Let alone have the first idea of what to do about it.

Remember that you are in charge of your treatment. And even though there is not much that can be done medically for you, there is some that can be done. Rilutek, yes, since you're bulbar onset. But also, technology holds the only real hope for you.

I used to use Dragon Dictate to control my computer, but now I have switched to an eye gaze tracker exclusively. If I become one of the lucky ten percent to lose control of his eyes, there's brain computer interface, still fledgling but very quickly improving. More importantly, there's the Bipap, which I depend on now to keep my breathing going. And soon, I'll need to have a tracheostomy if I want to go on with this sweet life.


But these are easy to learn about, and even though your doctor doesn't know jack, this is something they can actually do. It's the little things, though, that you'll need to learn about. The things that your neurologist will probably skip telling you about, or tell you about as an afterthought. And it's because your neurologist doesn't have ALS.

Like you'll want to get a bidet as soon as possible. This little device offers me the last bit of privacy and shred of decency. Or the sleeping situation, which you will need to adjust to and experiment with constantly. You'll need to discover for yourself if the bed will work for you, or if you'll need to sleep in a recliner, or even your wheelchair. And be forewarned, the most difficult part of this illness, for me at least, is your ability to get a good night's sleep.

I haven't begun to do justice to what you'll need to learn. There's so much more, like make sure that you get your arms stretched daily, and don't forget your wrists and fingers, if you don't want to end up with claws at the end of your arms. And get a Vitamix to make green smoothies, and don't let them tell you that the cans of so-called food they will inevitably shove down your feeding tube are adequate nutrition. That crap is nothing more than corn syrup and multi-vitamins, and fifteen dollars a can, nonetheless.

I am so sorry that you have been diagnosed with ALS. I wish it were in my power to reverse that terrible death sentence. No, it's worse than that. It's a punishment where you get to slowly watch your body dissolve, as you are forced against your will to become a spectator in life, as the people around you can only watch helplessly as the man they know and love becomes trapped in a hollow shell of a body, and they can only wipe your drool and help dress you like a rag doll, knowing that at the end, which is approaching far too quickly, they'll have nothing left to wipe than their own tears.

But it's not all bad, before I drive you to think there's nothing left to live for. To the contrary, as difficult as my life has become, it's nothing compared to my wife's, Gwen. Or should I say Wonder Woman. She not only has to grieve the little losses every day, and try to pick up the pieces as quickly as they fall, she has to take care of our two young children and me, and take care of the bureaucratic tangle of health insurance and Medicaid, and deal with countless phone calls, as I am no longer able to speak on the phone. And she bears the brunt of my restless nights, unable to even nap during her hectic afternoons. And that is all on top of her full time job and night school as she pursues her Masters.


No, there are lots of little joys in life that fill me up. I relish the time I get with my wife and daughters. Even though it is, by virtue of my physical limitations, as a spectator, these little moments are priceless. Although it comes with a corresponding and utter loss of privacy, I enjoy the company of my nurses, volunteers, and other visitors.

And the retirement is not all that bad. Although it's not at all what I imagined, and it's been thrust on me twenty years too soon, and I've had to make hasty adjustments to my bucket list, there are still good things about life. I still wake up excited about the day, and have a growing list, albeit limited, of projects I want to complete. Like books to write and programs to code on the computer, and even drawings to paint with my eyes.

I hope that my life stands testimony to the resilience of the human spirit, which cannot be killed, even when the mind is trapped in a body unable to lift a single finger in protest. And that even in a world that at times seems harsh and uncaring, that that same spirit grows ever stronger, vigilant against the injustices in the world, ever watchful for the joys it can bring to its fellow man, ever hungry for the simple pleasures to be found in life.

I will conclude with the story I learned in my sojourn in a monastery about a decade ago, of a monk who was being chased by bandits wielding swords intent on killing the monk. They chased him right off a cliff, and he caught onto a branch. The monk looked up, and saw the bandits above him, brandishing their swords and shouting curses at him. He looked below at a ledge beneath, on which paced seven hungry tigers, growling as they waited for the inevitable fall of the hapless monk. And then he looked at the branch to which he clung, and he saw a butterfly. "How beautiful," he said to himself.

Stay strong,

Aaron Winborn

Tribute to Rick Potvin's Cryonics Commentary

I was just outed by the sleuths over at Rick Potvin's Cryonics Commentary. Therefore, I have decided to come clean. Here is the original photo, before I shooped it. Enjoy!

family photo op

Persistence of Memory

Before I begin writing this, let me start by saying that I have officially given up wrestling with Dragon over control of my computer. Nuance has made an excellent piece of software, and I have no complaints, as it has served me well over the past year and a half. It's just that my voice has degraded to the extent, thanks, Lou Gehrig, that the computer no longer recognizes what I say with any reasonable accuracy. So how are you typing this, I hear you wondering?

I'm glad you asked. World, meet Dasher, the marvel of the twenty-first century. Dasher is an Open Source piece of software that works in conjunction with my eye gaze tracker to allow words to fly across the screen. I'm up to about twenty words a minute, with improvement every day.

My very first memory in life is when I rode on the back of a sidewalk chalk giraffe. I'm sure you didn't see that coming.

Well, it's true. It happened when I was almost three. March 11, 1970, to be exact.

It was dark, I remember. The giraffe was friendly, of course, though you would have already guessed that much, for what other sort of sidewalk chalk giraffe would allow a toddler on its back?

sidewalk chalk giraffe
(This image was created by myself with my eyes only, in case you're wondering.)

The giraffe had spots all over its neck, messy yellow and pastel purple spots, just like you would expect. Big round circles, drawn roughly, the sort that typically sport the back of a giraffe of that rare species.

I hold the memory dear, and when they make the movie of my life, I hope they get it right and animate this wild boy riding the sidewalk chalk giraffe of his dreams.

Oops, I gave it away, didn't I? About the dream, that is. And without a spoiler alert, even. Sorry about that.

The rest of that memory becomes a little hazy to me. I do remember the shock of light flooding the playhouse, moments before being lifted rudely without my consent and taken outside.

This is the part where I cannot completely trust my memory, because I first of all remember the rest of this in black and white, and correct me if I'm wrong, but I'm pretty sure that color had been invented well before 1970.

Second of all, although I remember my father telling me that there was someone he wanted me to meet, as he carried me out of the playhouse and away from my sidewalk chalk companion, the memory clearly shows my father standing a bit away, opening the door of a strange car, maybe a taxi, and with a red beard and his sailor's uniform, dashing, but, I hear you complain, how could you know his beard was red if the world was black and white? Bear with me, this is the way that ancient memories of childhood persist.

And finally, I remember quite clearly that my father was still holding me as he opened said car door. What, you ask, dear observant and slightly skeptical reader? Are you implying an out of body experience?

I make no such claims. In fact, I make no judgements of value to this memory. I simply accept it as it comes flying across the decades to this man, sitting in his wheelchair and reminiscing on that far away time, when he could still walk, could still grasp tightly to his father, and had fanciful dreams of being a zookeeper or a sidewalk chalk artist.

And now if you'll forgive me, it's time I take a brief rest, for I've just learned that Dasher interprets my tears as an indication to cause the letters to cascade in a mixed up clutter of word salad at the bottom of the screen, and I am unable to wipe my eyes without assistance.

But wait, I hear you cry. You can't leave us hanging. We don't know who your father wanted you to meet? And please, tell us more about that giraffe.

Well, since you ask so nicely, gentle reader. After all, the cliffhanger is but a cheap literary trick whose sole purpose is to sell the sequel, and besides not wanting to be seen as cheap, I'm not interested in causing undue stress. So let me wrap this up, and in a tidy package with a bow, nonetheless.

So it might have occurred already to you, astute and forgiving reader, that the person my father wanted me to meet may have been a new addition to the family, such as a younger sibling or a puppy or a visiting aunt. And right you are, there's no pulling the wool over your eyes.

In fact, the next part of my fuzzy memory is just that, although you have to remember that even though this memory is brought to you by a forty-five year old man, comfortable in his cliches, it comes from a very, very young child, in fact about the age of his youngest daughter, who should be getting home from daycare in a few minutes.

My father, still holding me from my distant vantage point, if you will recall, opened the door to the cab, an old black and white, if my memory serves me, and my mother, strangely skinnier than the day before, stepped out, holding this tiny, tiny baby. And I remember my dad saying, "Aaron, Meet your new baby brother."

Now we all know how memory works, and we know that some memories are better than others, and that some memories shift and turn in our recollections, transmuting into weird shapes as we try to reclaim them from the hallowed shores of youthdom. And some interlopers, fancy doppelgangers come unbidden in the night to place themselves in our minds, are not even ours.

But regardless of the glaring inconsistencies and window dressings enshrouding this treasured memory of mine, two things have stood the test of time, entrenched in the clarity of hundreds of late night meandering recollections. The first, as I have already relayed, is that as impossible as it sounds, I clutched that sidewalk chalk giraffe's neck tight and rode it through some lazy afternoon nap.

And next, and this is probably the reason the memory has even bothered to persist across the decades is this: the thing that stands out most to me is a vague feeling of annoyance that they dragged me away from my adventure with that sidewalk chalk giraffe for this?

And there you have it, dear and gallant reader, the defining oldest memory of mine, this sanctuary that bears me through difficult, long nights, this persistence of memory.

Syndicate content

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.