Open source prosthetics

Clicking into an article by Aimee Mullins, a double below knee amputee, actress, track athlete, and total babe, resulted in a moment of groaning "what the hell" at my computer screen. The article -- "Is Choosing a Prosthesis so Different than Picking a Pair of Glasses?" -- spoke of how prosthetics have evolved to the point of being as specialized and aesthetically unique as eyeglasses in the last fifty years in the United States.

To illustrate her point, Mullins notes:

"...no one has yet to build a leg that does it all --- I have to change legs when I want to wear high heels; I have to change legs when I want to wear different height high heels; I have to change legs when I want to swim, take a boxing class at the gym, or sprint on the track. I have 12 pair in all (though many are housed in museums)."

While the there are indeed parallels, the article largely neglects the enormous burden of cost and limited access to this cutting-edge technology that so often gets featured in the press. Those very legs that Mullins has relegated to museums sit well out of financial reach for the majority of the disabled community.

Full disclosure: I myself am a double amputee; being born without legs. No stumps, femurs, or anything. I start at the pelvis. I never experienced the contrast of pre/post disability. I grew up thinking of myself as whole and complete. Whenever I was confronted with a set of legs, they felt like highly impractical stilts designed with aesthetics over function in mind.

I remember always feeling a mix of awkwardness and obligation when I slid into the big, wobbly, pair of legs. The only element that kept me in prosthetics was the reminder from doctors, family, and therapists of the time and money they took to create.

At every possible opportunity, I would abandon the legs in favor of running on my hands -- or later in life, using a skateboard. I found that the practicality and affordability of these two options allowed for more financial and logistic freedom for getting around the everyday world. If I was traveling and something on my skateboard broke, I could buy a replacement locally (and cheaply). If a glove got torn up on a hike, I could wrap some duct tape around it. My family had always focused on simple and practical solutions to any physical challenges I might face, and eventually I learned how to "MacGyver" my way out of situations as well.

I found out about www.openprosthetics.org in March, and immediately fell in love. NPR described the creator, Jonathan Kuniholm's mission, as an "open-source collaboration that makes its innovations available to anyone."

One of the most interesting examples was the reviving an old upper extremity prostheses that had been originally developed in the 1920s or '30s. Named the Trautman Hook, it consisted some rubber bands, three metal parts, and two screws. All of the designs were posted for free on the site, as well as fabrication costs from different companies around the country. A practical and cost-conscious alternative to the expensive and single function prosthetic paradigm felt like a revelation. Open Source. Some weird, cool concept that only futurists could write about. The Firefox of artificial limbs.

For a bit more perspective on the cost and difficulties of obtaining a prosthesis, I rang up Cliff Creekmore, the manager of a local Hanger Prosthetics branch in Montana.

"As of July of 2008, a moderate activity prosthesis for a below-the-knee amputee costs about $17,500."

For a double amputee, the expense doubles. And getting insurance to cover more than one leg is a hassle. When you put those costs in context of Aimee Mullins quote, from a financial perspective, buying a prosthesis is a world apart from buying glasses.

Thankfully, Aimee does go so far as to admit the issues confronted by the average prosthetic user, "Not one pair of my legs is covered by insurance; not one pair of my legs is considered "medically necessary."

And so, in the face of such debilitating costs and access to the prosthetics, it's incredibly liberating to see movements like The Open Prosthetics Project gaining momentum. Could it ever grow large enough to become an alternative to the private routes? I don't know, but I dearly hope so. As we've seen in many other areas, open source competition tends to breed innovation from incumbents, It would be something to one day finally see prosthetics that are adaptable and multi-use without the steep costs we currently experience.

Check out their main site to see some of the finished projects.

And if you want to get into the nuts-and-bolts of developing projects, head to their Ning site.

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Lobster

If each pair costs at least $17,500, she has 12 pairs and insurance didn’t cover any of them, I’m not sure I find her all that convincing.
- Terry
  
  “If each pair costs at least $17,500, she has 12 pairs and insurance didn’t cover any of them, I’m not sure I find her all that convincing.”
  
  Really? Why not, exactly?
- Anonymous
  
  Aimee Mullins is a super model, so she has all the money in the world. She probably also has an X-deal with the prosthesis manufacturer for promoting the legs.Ãœ
- dculberson
  
  Because amputees can’t be wealthy?
arborman

The University of Victoria (of all places) has a great program that links engineering students to people with disabiilities to come up with specific supports (whatever they may be). I think it’s called CanAssist.
- holtt
  
  Here’s the link Arborman…
  
  http://www.canassist.ca/
nixiebunny

My wife has a wooden leg, so I’m interested in the cost. (Currently health insurance pays, but it’s ridiculous – $10K for a two-piece carbon-fiber foot and a fitted plastic sleeve?)

I heard about the Jaipur Leg in India many years ago, and it recently turned up in an article about counterfeit Jaipur Legs. Apparently, these folks can make a reasonable leg out of some PVC pipe and a few odds n ends.

I’d really like to see some plans and a guided video tour of their facility.
- Anonymous
  
  Have you checked out http://www.jaipurfoot.org/ ?
_OM_

,,,I’m sort of surprised Teresa or even Takuan – out of spite, no less – hadn’t dropped me an e-mail about this. Where the fuck were these guys during my seven months of pure hell dealing with the Texas State organization that deals with obtaining amputees the prosthetic they desperately need? Granted, I’ve joked a lot about the basic simplicity of my fixed-ankle leg that’s attached to “Stumpy” and how I could almost get all the parts necessary to build one from Home Depot, but apparently I’m not the only guy who’s thought this through as well. I might just hop – no pun intended – over there and see what they’ve got in mind.
holtt

Mel, I wasn’t questioning any truthfulness there. Binyon’s is a big glasses chain in the US that is always advertising pretty inexpensive glasses. See http://www.binyons.com/
cosedcasket

I don’t mean this in a snarky way — I’m just curious: If you were born without legs, you’re still considered an amputee? Or, to put it another way, how can you be an amputee if you’ve never had anything amputated? Is it just for lack of a better word?
- peterbruells
  
  I’m guessing that “cripple” went out of fashion. Probably rightfully so. Perhaps “legless” or “legfree” would suffice.
  - Anonymous
    
    As a guy who was born with exactly one functional arm, I can tell you I personally don’t mind the word “cripple” and in fact, it’s how I describe myself. That said, I’ve adapted quite well and I don’t know what I’d do with a second arm if I had one.
Anonymous

I have seen Aimee’s speeches and always marvel at the fact she doesn’t talk about the cost of the legs and how many amputees can’t afford one set of legs let along 12 pairs! The Challenged Athletes Foundation does also give grants to pay for the sports prosthetics if any amputee is looking for support to pay for a running leg it’s another great resource out there since insurance companies may pay for walking legs, the sports legs are not considered “medically necessary”
bcsizemo

While a 5 figure amount for something like a leg does seem quite high, I’d expect it to be a couple thousand at least.

I think scales of economy has a decent amount to do with it. Especially when you get into a custom made (probably by hand) carbon fiber unit. Dealing with aesthetics, weight load, length, and functionality would require someone with a good amount of experience. And it’s not exactly like selling shoes or glasses. A large portion of the population doesn’t require it, so mass production doesn’t necessarily make the most economic sense from the builders stand point.

I’m all for the diy hacks, anything to expand the field and help spur new thought and direction.
MelSkunk

I guess it’s totally like buying glasses if you’re like me, making $20,000 a year and needing pairs whose lenses cost a minimum $450-500 dollars, no matter what sort of addons you get … (My last set was bought with major sales and I was thrilled I got the cost down to $640.. )
Because like those prosthetic users, I can’t afford more than one pair and certainly don’t have vanity sets.

(Note this is just noting that glasses aren’t as swappable and fashionable as glasses either if you’re poor enough and have very bad eyesight, not to degenerate the massive cost of a prosthetic, which makes my small problem with my eyes seem minor)
Anonymous

Jesus. Imagine living in a land-mine-ridden country (generally not known for their high GDP). This would be quite a boon to appropriate tech.
holtt

Wow. Specialized lenses? Doesn’t sound like we’re talking Binyon-style there.
- MelSkunk
  
  I have no idea what Binyon style is, but I’ve got a mixture of very poor eyesight (lenses won’t correct to anything like normal vision but they’re good enough) and some astigmatism.
Mac

holtt (#3): Around here we have a community group called ‘TAD’ – Technical Aid for the Disabled.

They are basically a bunch of engineers and techies who create customised solutions for people with disabilities. (Obviously I’m oversimplifying the organisation somewhat!!)

This sometime involves very simple changes, like adapting a child’s toy so that they can actually press the buttons. (This may not be a problem with the toys for tots with giant buttons, but as they get suitable for older ages they become more sophisticated and start assuming finer motor skills)

It’s worth looking into something similar for your area.

Good luck!

Mac
jonw

apparently I am the first to ask this here:

how do you walk on your hands? upside down like a handstand? or more of a bump-scoot technique?
Curmudgeon

The US government–via DARPA–has dumped a hundred million dollars into prosthetics. (A fraction of what is owed to the soldiers mutilated by the war industry.)

But has anyone talked about the ownership of the technology paid for by the US taxpayer? Nope. Why? Because it’s universities and private companies. Now, if this research were public domain, we all know how it would leverage the state of the art, compress the development cycle, and drop the costs. That’s what OpenSource does.

(DARPA, and government grants, have traditionally been about theft of public money for private good. And don’t give me that “what about the Internet crap”; BBN and other companies held a lot of patents and innovation only occurred once those had lapsed, and Network Solutions made a fortune raping people who wanted domain names.)

Consider the DEKA arm:
http://www.cbsnews.com/stories/2009/04/10/60minutes/main4935509.shtml
http://www.dekaresearch.com/deka_arm.shtml
http://spectrum.ieee.org/biomedical/bionics/dean-kamens-luke-arm-prosthesis-readies-for-clinical-trials

Why isn’t this public domain given that the US taxpayer paid for it? (Why isn’t ALL research paid for by the US taxpayer free, and why do we have to pay to read journal articles publishing taxpayer-funded research?)

Why isn’t the development cycle being compressed by the army ants of the geek contingent, who would work on this for free because it was cool. It would be another Linux.

Ahhh, Virginia, there is no Santa Clause: someone always has to extract every nickle from the taxpayer. As de Balzac said, behind every great fortune is a great crime.
Kevin M Connolly

Hey jonw – I walk on my hands and torso. Check out the first ten seconds of this video for an idea: http://www.youtube.com/watch?v=5ht6klBtmcI
Anonymous

This story reminds me of a WW2 vet that I worked for in high school. He had been in the Royal Engineering Corps in SE Asia and got one leg blown off by a land mine. Because he was a vet, the government paid for a fancy, expensive prosthetic leg. I saw it once, collecting dust in the back of his garage. He designed and built his own more functional peg leg that allowed him to continue playing tennis, working outdoors, and doing all of the other things that he loved. The “official” prosthetic was designed to look like a natural leg, but was functionally dead weight. If he were still alive today, I’m sure he would have loved to be a part of a project like this.
Kevin M Connolly

Thanks for the comments, @Curmudgeon. Yeah, I’d heard about the DEKA arm and the funding that it’s received through DARPA. Converting the whole prosthetic world to a “linux” system would be awesome. Unfortunately, if the percentage of linux users are any indication, we’re still a long ways off. Also – I love your SN.

And hitting an older comment – @cosedcasket

Yeah – in terms of practical physical issues, I would still be considered an amputee. I think that if I had an underlying condition at birth, that might’ve been the name I was given. But as the case was, I was simply born without legs. No other health issues. The taxonomy is a little weird, but for all intents and purposes – yes, I’m a double amputee.
- Curmudgeon
  
  Kevin, my point about Linux was that many people contribute software because they like the project. Linux’s acceptance in the marketplace is one of software: one simply can’t get the necessary name-brand applications and the pre-trained employee base to induce most people to switch. Lack of market acceptance would not apply here.
  
  With an Open Source paradigm, you’d see many hobbyists, undergraduates, and master’s students creating everything from minor tweaks to major innovations. The world’s knowledge is built up incrementally, and if one makes it easy for people to contribute, they will. I don’t have the time to do major software development, but from time to time I have fixed software defects and sent in a patch. That’s the power of an army of ants.
  
  I could easily see inexpensive versions of the DEKA arm controlled by computers (remember the Armatron?), not for prosthetic purposes, but for the “gee, isn’t this cool?” factor. When Kamens gets a pile of patents for engineering paid for by the PUBLIC, nobody else can use that technology without paying for it. That’s just plain wrong.
  
  (NB: when a private company pays for development it is entitled to limited-term use restrictions by others in exchange for giving up all rights in the long term. When the taxpayers funds development they should receive the rights, i.e., the technology should be public domain.)
  
  My gripe is that government could make something better at no additional cost, yet has failed miserably. Kamens is a nice guy who cares enough to get children involved in engineering; I don’t have anything against him personally. But I think it’s wrong that he, along with every other business that gets a grant, can suck at the public teat and not give anything back.
Kevin M Connolly

Thanks for the Jaipur Foot link, Anon. I haven’t ever heard of this organization, but it’s definitely in line with what we’ve been talking about. From huge international efforts like Jaipur to TAD – the local group that Mac mentioned above – it’s clear that a need for cost-conscious prosthetics exists. Now if Open Prosthetics could pull more of these people and groups together online, I think you could start to see some really cool stuff come about.

Jon – thanks for chiming in – and I loved the “Six Million Dollar Meme”post. I’ll be getting back to you on email soon.
Boondocker

There’s an interesting parallel here to an area of speech-language pathology (my line of work). The high cost, and thus limited availability, of limb prostheses is mirrored in part by the high cost, and thus limited availability, of voice prostheses used by people who have had their larynx removed (usually due to cancer). It’s really frustrating to see people with low incomes have to face the economic realities of getting an artificial larynx or esophageal-trach prosthesis. They’re wonderful devices, but like high-tech alternative communication devices, their cost puts them out of reach of a lot of people.

I’m not certain, but I think that health insurance doesn’t currently cover voice prostheses. There’s some funding available, and speech-language organizations lend out a lot of items.
holtt

Kevin, this reminds me of what I’ve been doing at work on the side lately.

People with physical and intellectual disabilities aren’t always able to use keyboards or mice because of a lack of fine motor control. So what’s arisen is the idea of switch computing – using a piece of software with 1 or 2 switches. Maybe the switch is the equivalent of a mouse click or enter key, or maybe one switch is like “tab” to advance to the next option, and the other switch is like “enter”.

The switches come in all flavors, head bangers, soft cloth “squishy” switches, puff switches, and just big ass buttons (think Staples “Easy” switch).

The problem is, even the basic ones (just one big “easy” switch”) cost a fortune – $50-100 at times. Which is just insane. And the thing is, that switch can’t even plug into the computer directly. You need another $100 box that’s a special “hub” that turns it into a keypress fed to the computer via USB.

Yet at the same time, you can go buy a really cheap ass USP keypad or game controller for $10.

So just why nobody has gone to a $4.99 keypad manufacturer and said, “How much for just one big ass button on the thing, wired up to the enter key?” I have no idea.

Anyway, reading your post and checking out the OOP site has been good. Thanks.
- macegr
  
  holtt, it’s possible to build very simple and cheap one-or-more button devices that can connect to a computer directly through USB. I’ve done it a number of times. Part cost is easily under $10 including a giant arcade button. Cheap microcontrollers and free firmware libraries like V-USB make it simple. Please feel free to contact me if you need something like this to exist.
holtt

Oop, meant OPP not OOP :)

Oh this also matches the whole hearing aid thing too. Reasonably useful hearing aids are $1000-1500 per ear. Insurance often won’t cover them, or covers some ridiculous amount like $300. I’m only wearing a decent pair right now because of a generous gift from my parents, certainly not all the years of paying premiums to Blue Cross.

Yet they are almost necessary for anyone in the work force. Imagine going to meetings or trying to do your job without glasses (if you wear them). That’s what it’s like having hearing loss. Hearing aids are like glasses for your ears. Some people can get by without glasses, but some people can’t. Can you imagine a workplace that didn’t provide vision coverage and deemed it unnecessary?
- Anonymous
  
  I’m hard of hearing as well. I’ve never liked the hearing aids/glasses analogy because hearing aids don’t correct hearing like glasses correct site.
- Anonymous
  
  Actually vision coverage stinks. Every vision plan I’ve had has required visiting expensive facilities, and you end up paying more for your glasses than you do if you don’t have insurance. Luckily for me, cheap glasses don’t cost anything near what a hearing aid costs.
- bergenia
  
  Wow, if you’ve always had work places that paid for vision and dental, you are either really lucky, or don’t live in the U.S. I’ve never had a job that paid for either one, so I am accustomed to paying for 100% of the cost of glasses, braces, and dental work.
  - holtt
    
    I have been lucky bergenia. The ridiculousness of it all is the dichotomy of a workplace that would bend over backwards to help you out with your hearing loss disability, but wouldn’t get insurance that covered them. Like someone who’d pay thousands of dollars for someone to read stuff to you that you couldn’t see, but wouldn’t give you $100 for a pair of glasses.
MelSkunk

(Oh, and thanks for not telling me my glasses can’t possibly cost that much, a normal quote from most everyone when I tell them)
pinehead

Now this is an interesting concept. I have all my limbs, but it’s less about personal investment and more about lifehacks. Having ready access to fabrication guides, hardware sources and a community of fellow builders would be revolutionary for any amputee makers out there.

It could tie into homebrew CNC, fiberglass fab, welding and other disciplines, as well. There’s a hell of a lot of potential with this, and only good things can come from making the information available.
Terry

“I grew up thinking of myself as whole and complete.”

And that’s because you were and are. Wholeness – like happiness – is a state of mind, not a set of circumstances.
- Anonymous
  
  My gut tingled a little after reading this, now I have to go hug my dog, whether he likes it, or not.
Eliot

Why I’m not buying an iLeg (and you shouldn’t either)
jdebesche

This discussion reminds me of Whirlwind Wheelchair, who has done similar things with wheelchairs, which are both out-of-reach expensive for many in the developing world, and are designed for places with sidewalks and etc. Whirlwind trains people in places all over the world to make chairs that match local conditions from local materials for reasonable prices.

http://www.whirlwindwheelchair.org/
Mikolaj

When my wife got a c-leg, the technician said: “see this charger? This piece is worth 800 Euros.” Hello? Does it make some medical-grade power or what? Most probably it’s real cost doesn’t exceed 20 euros. It has even “made in china” written on it. But for sure it is properly certified for medical use.

So I’m just wondering, is it really the development costs, that stand in the way of affordable prosthetics, and not e.g. the need to have every nut and bolt approved.
Jon Kuniholm

Kevin –

Thanks very much for the kind words for OPP.

I think that there are ways to solve these problems, primarily through identifying larger markets for which the products we need are also solutions. An example is our signal processing video game controller (http://openprosthetics.wikispot.org/Open_Myoelectric_Signal_Processor). In the voice surrogate space, we have considered trying to use an Android tablet to make a cheaper version of the Dynavox. While not much cheaper than the keyboard and mouse solutions mentioned above, the combination of the open source NeatTools.org and sensyr.com’s switch boxes are a step in the right direction.

As Kevin points out, these needs are not served by claiming victory in any of these areas when it has not in fact yet been achieved. It is convenient for the (entertainment rather than politically) biased media to continue to pump out stories that result in these “what the hell” moments–what I’ve called the “Six Million Dollar Meme” (http://openprosthetics.ning.com/profiles/blogs/the-six-million-dollar-meme). The more that these stories are believed, they distract us all from appropriate solutions to the problems that remain.

While we have by no means yet created an acceptable alternative to commercial prostheses or any assistive technology, I am confident that our approach will ultimately make a meaningful contribution.

In any case, we haven’t got much to lose by trying something new.

Jon Kuniholm
Open Prosthetics