ALS

Question: Our son now age 43 is fully paralyzed as a result of ALS - Lou Gehrig's disease. That diagnosis was made 23 years ago and over the ensuing period our son has lost the ability to move.

He can now voluntarily move only an eyelid and even that movement is possible on a "good" day and even then is virtually imperceptible He is on a ventilator, nourished by stomach tube, urinates by catheter etc. etc. He does watch movies etc., but even though he could previously use his skills in programming etc. to develop products to assist himself and other immobile people, he is now stranded without the ability to signal, let alone communicate or accomplish anything else. When diagnosed, our son had completed law school and had many brilliant accomplishments which can but need not be enumerated here. We have no reason to assume that his ability to sense and think and react has been reduced let alone lost...but the physical manifestation of any of those mental processes is virtually meaningless without the ability to communicate. At this point, our son does not have a means to "signal" for help, let alone communicate ideas.

The reason for this message is to ask whether you can suggest an institution or researcher who has investigated the extent to which brain waves can be harnessed in a way which would enable our son to "operate" a signalling device (light, buzzer etc.) in order to summon assistance or reply to questions (his hearing is fine, his eyesight somewhat impaired because he does not have the ability to completely close his eyelids).

We have heard that technology exists which would sense/collect the electrical output of "heavy thought" and once that brain activity is sensed, it could be used as a "switch" to operate an independently powered signalling device. It has been suggested to us, that technology exists to perform this function without invasive electrodes or similar brain connections...possibly by way of a metallic hairnet worn on the head and wired to reactive switches/equipment.

Because we do not have scientific/technological backgrounds, my wife and I cannot use appropriate scientific/anatomical jargon to express the problem, let alone the possible solution, if there is one.

Can you assist us by answering this message or referring this enquiry to those who would know where to look, or where we should look? 

Answer: I am familiar with the idea of brain-computer interfaces to assist individuals with locked in syndrome or with ALS communicate using what motor control they have. Unfortunately, I do not have any personal or professional contact to give you who are involved in this sort of research. I have attached a website that pertains to a study that researchers in Tennessee did and a few articles that address brain-computer interfaces. 

I would also encourage you to check out: www.clinicaltrials.gov  You can see if there is a clinical trial being done to test this technology in patients with ALS. You could also reach out to to the authors of the studies.

http://newatlas.com/brain-computer-interface-brain-stroke-communicate/34204/