Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Tuesday, October 18, 2011

Communicatin': Without Words, Clicks, Blinks, Twitches . . .

Adam, in all his glory!
     Now, if you have a severely disabled kid (Adam's 25 but he's still my kid) and you had one wish, what would it be?  Releasing hand and foot contractures? Straightening his spine?  Moving that old pelvic floor into proper position?  Magically curing the olde incontinence and digestive stuff? Having the boy walk and grab for stuff?  Or, could it just be communicatin'...telling you what hurts, telling you when he needs to be repositioned, telling you when he wants the channel on the tv changed, telling you when he wants you out of his face?  I would probably opt for communicatin' (although I have not discussed this with my wifey).
      Adam does communicate with a grimace, with a groan, with a spit, with a closing of his eyes and he's getting better on closing his eyes on command.  He also contracts more tightly when he's irritated.  I want more...that's my wish!  Of course, I want the other stuff, and the daily ABR is addressing the structure of his body.  I want more!  So I keep searching.

       I have been closely examining and talking with researchers at Brain Gate which is a collaborative effort of Massachusetts General Hospital and Brown University.  Clinical trials have been on going with certain populations who are essentially "locked in" since 2006.  The technology is not quite there but remarkable progress is being made.  Here is a brief description of this type of Brain-Computer Interface:

       A long-term goal of the BrainGate research team is to create a system that, quite literally, turns thought into action – and is useful to people with neurologic disease or injury, or limb loss. Currently, the system consists of a “sensor” (a device implanted in the brain that records signals directly related to imagined limb movement); a “decoder” (a set of computers and embedded software that turns the brain signals into a useful command for an external device); and, the external device – which could be a standard computer desktop or other communication device, a powered wheelchair, a prosthetic or robotic limb, or, in the future, a functional electrical stimulation device that can move paralyzed limbs directly. The following link described in detail the latest research: Here.  Or here's a New York Times article about a man using thoughts to control a robot. Also a "60 Minutes" episode about using thoughts to control movement.

   The sensor which is implanted is about the size of a baby asprin.  They are presently working on a wireless technology and refining the computer algorithms which translate thought via the electrical signals of the motor cortex into action.  Thought, plain and simple intention, can control computer screens, appliances, and robotic arms which may be near the kid.  An example of the technology would be if Adam wanted a drink, he thinks of his hand picking up a glass of beer and bringing it to his lips.  His nearby robotic arm would be directed to perform the action.  If he wanted to be left alone, he could think the thought, thoughts read by computer to display a keyboard and he could think letters or pictures or commands.  
     The technology is not here quite yet, but steady progress is being made to make it a reality.  This is the stuff of which dreams are made and the technology is not in the very distant future.  It is around the corner.
     The clinical studies are pretty much limited to brain stem stroke, ALS, muscular dystrophy, cervical spinal injury and motor neuron diseases.  The unit is expecting to seek FDA approval in the near future to include other "locked in" populations.  A limitation is that you have to reside within 3 hours of MGH...thankfully we are an hour away.  So contacts have been  made and we're on a list for future clinical trial consideration.  Just imagine the potential!
      Remember when we folks marveled at Buck Rogers, Jules Verne and H.G. Wells (younger parents won't have a clue about these guys).  I really believe that the future is here and will open up worlds for the disabled which were unimaginable yesterday.



  1. What wonderful dreams -- and who knew even fifteen years ago that we'd all have cell phones and watch movies on tiny screens and our kids could play games on the television with their arms and legs imitating baseball players, etc? How wonderful it would be to really understand my Sophie --

  2. Oh Phil, what exciting potential awaits our children. If only it could happen now. I just hope that your family can experience this in the very near future. It could change so much and enhance their lifestyle in a way I can only dream about. I'm so glad that Adam is on the list. That gives us all hope.

  3. Amazing ABR changes with the new wonder egg! Wow!
    This Brain Gate technology sounds so promising for so many! I'm going to ask Cj's team about it, as they are brilliant. I'm not sure if Cj could benefit because of his Dystonia.

    p.s I have not been able to post comments for awhile...? Hugs to all!

  4. Fascinating stuff, Phil. I would probably choose communication with my son over other miracles too. When I last saw you at your home, i sensed that Sharon was already there on the edge of Brain Gate as I observed her communicating with Adam. (Nice to see something that ends in g-a-t-e that is not a scandal). You have always been very productive,extremely bright (especially in your choice of a mate), cutting edge and at the forefront of challenging the status quo, but you have soared to new heights in your retirement. I recall someone saying 2011 would be the year. Despite your memory deficit, i think even you would remember who said that.

  5. I too would choose communication as something I would change. Some days I just long for Ryley to tell me he feels sick. Or to shutup. This brain gate technology is exciting. And I hope that it is something that becomes more accessible in the future.

  6. Thanks all...communication is perhaps the most prized gift that the universe could give us all for our kids. Somehow I think it is nearer than we I keep hopin' and prayin' and researching. Will update as times goes on...blessing to all my friends in cyberspace.

  7. Wow - way cool! Thanks for doing the research and sharing with us - great stuff to know about and I'm glad you made those contacts and are in line!

  8. Love the picture of Adam and the potential for better communication. I hope you get that call when they are ready to start.


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