Affecting more than 400,000 people globally every year, ALS, also known as Lou Gehrig’s Disease, impairs brain and spinal cord nerve cells, gradually diminishing voluntary muscle action. Late-stage patients often become totally paralyzed while retaining brain functions.
We spoke with Eric Valor, a California-based IT professional who has ALS, to get his thoughts on the proof of concept.
What is it about ALS that seems to generate so much attention – the recent ALS Ice Bucket Challenges among celebrities in the US to raise awareness, for example?
This topic gets attention because it is sexy. The living cyborg is thrilling for the same reason vampires are: It simultaneously taps our fear of an unknown evil and our awe of superhuman power.
What about this technology in particular?
It is very personal and for the first time really allows the brain to somewhat escape the limitations of our physical being. That theme has been used in multiple science fiction stories and movies -- recently in the movie "Transcendence,” for example. The Accenture/Philips proof of concept is the first practical example of this brain-computer interface product concept, reliant as it is on visual control. All previous examples were simple games and non-practical manipulation of video-generated elements.
Wearable devices have been called the “future of assistive technology”. What else do you think the future has in store to help people with ALS maintain their independence?
Wearable technology, such as Google Glass and its variants, bring computer technology into the personal space, for good and for bad. It is the next evolution of the phone. The telephone was the first practical technology for private immediate conversation with remote parties. Having your own telephone in your room was the ultimate status symbol for kids in my generation. Wired phones were quickly supplanted for wireless, and then as cell phone prices dropped those became the must-have. Having hands-free wearable versions of this, responsive to very limited gestures, motions, voice commands is a very natural progression. Reading our thoughts for command interface is the next near-frontier.
What does this latest technology mean to you personally?
Because current wearable technology requires limb, mostly hand, movement to fully exploit, these products are not useful to the paralyzed crowd. I knew at my diagnosis that eye-gaze technology was available so that I could continue my life online, something I had been robustly pursuing since 1982.
Without it, I would not have chosen to go on living. I know fellow patients who allowed themselves to succumb after eye-gaze became impossible due to advanced ALS. This product could have allowed them to continue relatively happy lives.
I don't know a more powerful endorsement than that.
You have used the term “the most noble technology.” What does that mean?
The future, assuming no breakthrough advancement of regenerative medicine, will be for replacement of lost physical ability such as arms and hands. Even given a breakthrough as described, people with, say, cerebral palsy or with limb loss/deformation, would be able to control artificial limbs to restore independence and personal stature in society. I meant my statement that "the most noble technology is that which allows us to restore lost ability”.
This proof of concept involves using brain commands and wearable technology. Do you think this is a good fit for ALS patients?
It's still very early in the brain command game. I think as it is right now it would be usable by people with patience, a strong will to make it work, and those with no choice. For the general population the system needs to be easier to train and more robust in terms of the daily abuse consumer electronics receive.
I love the user interface. That needs to be engrafted into current products right now. I think glass uses something similar but not nearly as deep and aesthetically pleasing. The brain-computer interface technology needs a little more time in the oven. But once robust enough for daily use without having to fiddle with placement and such, this will be integrated into fashion accessories and become a normal interface for personal and environmental electronics.
What are you own expectations for the Accenture, Philips, Emotiv team?
I think you just created a leadership role. What happens next is entirely in your hands. You have shown what can be, using consumer-grade equipment. You can be certain now that someone will do this. Whether it will be you is up to you.
You’re active in the ALS community - what type of reaction have your peers had to this proof of concept?
The people in the community want to know when this device will be available.
For more information about Eric, ALS and his work with the ALS Community, visit: http://www.friends4eric.org/