Enter your email address and select the appropriate button below to receive email notifications of updates to this site, or remove yourself from the list.

Join the Dejerine-Sottas message board and connect with others affected by Dejerine-Sottas!


Do you experience neuropathic pain from Dejerine-Sottas?

 Yes, often
 Yes, occasionally

View results

Stem cell research far from booming

August 24, 2002

Filed under: Stem Cell Research

(As seen on The Washington Post reports that stem cell research in the U.S. isn’t exactly booming, due primarily to the fact that only three colonies of embryo cells are readily available to researchers.
Can we get moving here, people?

Talking with your hands

Filed under: Assistive Technology

Since some people with Dejerine-Sottas experience deafness or hearing loss to some degree, I thought this story from CNN was applicable: Talking gloves to break barriers for deaf. (They don’t actually talk, they just display what the sign-language user is saying on a monitor.) For more details, visit the developer’s homepage.

Say it with just a glance

August 23, 2002

Filed under: Computer Accessibility

The BBC, The Independent, MSNBC, Slashdot, and Nature (subscription required) are all running stories about The Dasher Project. They’re touting it as an eye-operated computer system, which is not quite accurate: Dasher is a text-entry interface, driven by "natural continuous pointing gestures". It can be used with mouse or stylus for keyless text entry on PDAs or other devices where a keyboard would be awkward; it just happens to be usable as an eyegaze interface as well. Eyegaze computers have been around for several years now, but they are admittedly a little clumsy to operate and prohibitively expensive ($14,500 currently), and therefore only the severely disabled currently have the motivation and the patience to use them.
Though discrete speech voice recognition is my interface of choice, I demo’d a gaze-operated computer from LC Technologies, Inc. several years ago at an Abilities Expo, for a marathon session of 30 minutes. (The recommended session time is only 15 minutes, after which you’re in danger of eyestrain.) A video camera attached to a computer focused in on the reflection from my eyes and tracked their movements, calculating which letter I was looking at on an on-screen keyboard. If my eyes rested on a letter long enough, the Eyegaze computer would send the letter I typed to either a built-in program with a voice synthesizer, or to a second computer for use in a standard Windows program. (There’s a photo of me–actually, of the back of my head–trying it out in Guide to the Evaluation and Management of Neuromuscular Disease, by Dr. John R. Bach. A must-read for anyone with Dejerine-Sottas.)
Photo of Michelle using an Eyegaze computer
Hunt-and-peck by gaze is a bit exhausting. I felt a compulsion to blink like Jeannie (as in I Dream Of) to push the onscreen buttons instead of waiting the "fraction of a second" for my eyeclick to register; but alas, blinking was verboten because it would throw off the device’s tracking, and then you’d have to recalibrate it before you could type another letter. You’d also have to recalibrate if you didn’t hold your head still.
Photo of the Eyegaze screen
Make no mistake, these are serious drawbacks. The average human blinks 22 times a minute when not staring at a computer screen, and seven times a minute when doing so. (And even that seven times a minute isn’t enough to satisfy your ophthalmologist.) You have to suppress, as much as possible, your natural urge to blink in order to use the system, because each recalibration takes 15 seconds… and fifteen seconds is an eternity when you’re trying to communicate something as important as I’M IN PAIN, or even something relatively minor, like your latest genius idea for your doctoral thesis.
The most significant advantage of Dasher is that it’s also combined with word prediction software, another technology which has been available for several years now. No longer do your eyes have to jump between letters on an admittedly inefficient keyboard layout; instead you just watch the letters streaming past on the screen, their order optimized to your vocabulary, and follow the ones you want. Plus, there’s the cool factor. Imagine how this baby would look with a futuristic Matrix-like skin, or a psychedelic background. Load up a vocabulary of horror stories and plug in a trackball disguised as a Ouiji board, and presto, you’ve got an art installation. I’m trying to convince my sister to cobble one together in time for Halloween.
Animated example of the Dasher interface
But, I digress.
I don’t doubt that the Dasher system will make eyegaze computing more ergonomic and accessible–for the eyegaze interface-using community. But for it to be adopted by the general public, it has to offer some significant advantage over their current interface, and you have to be able to operate it just as reflexively. I can’t imagine that a stylus-holding PDA user would find Dasher easier to use then handwriting recognition, or speech recognition.
So for now, I’ll stick with DragonDictate. But when they perfect the neural interface, you can bet I’m going to be first in line to jack in.
For more on eyegaze systems or other alternative interfaces, see Adaptive Computer Products from Jim Lubin’s disABILITY Information and Resources page.

Genomic Art

August 19, 2002

Filed under: Miscellaneous

Interesting gallery of Genomic Art.

edurado_thum.gif l1.gift1.gifh1.gif race_thum.JPEG

Outlook for US stem cell research brightens

August 15, 2002

Filed under: Stem Cell Research

The US government quietly released a clarification of Bush’s restrictive policy on stem cell research – making it far less restrictive than feared. And a $5 million grant has been announced to the University of California, San Francisco, in order to pursue research into stem cell applications. Things are looking up!

When you think disability, think zeitgeist

August 12, 2002

Filed under: Assistive Technology

To kick off this site, I’d like to begin with one of my favorite articles on the subject of assistive technology, The Next Brainiacs by John Hockenberry, from Wired. (Hockenberry, by the way, is also the author of Moving Violations: War Zones, Wheelchairs, and Declarations of Independence, which is in my opinion probably the best autobiographical “crip book” ever… at least until I finish mine.)
An excerpt from the article:
"The greatest thing people with disabilities have done for the general population is to make it safe to look weird. It’s certainly true that the general population has glommed onto some principles of assistive tech. Just roll down the street and observe the folks with wires dangling from their ears. Look at the TV commercials featuring guys with computerized eyewear."