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 | Science in the Cinema 2008 Transcript: The Diving Bell and the Butterfly |
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National Institutes of Health
Science in the Cinema 2008—The Diving Bell and the Butterfly
Post-Film Discussion—Lana Shekim, Ph.D., and Alan Braun, M.D.
Dr. Fuchs: Our speakers this evening are Dr. Lana Shekim, program director of Speech/Voice, Division of Scientific Programs, and Dr. Allen Braun, chief of the Language Section, Voice, Speech, and Language Branch, National Institute on Deafness and Other Communications Disorders (NIDCD), National Institutes of Health (NIH).
Prior to joining NIH in 2001, Dr. Shekim served on the faculty of the George Washington University, and she was a clinical director of the speech language pathology service. Her clinical experience is in the management of individuals with acquired neurological communications disorders. She earned a Ph.D. from the University of Florida in Gainesville and did postdoctoral work at Johns Hopkins University.
Dr. Braun is the Chief of the Language Section in the Voice, Speech, and Language Branch, NIDCD. His major research interest is in the use of various imaging technologies, such as PET scans and MRIs, to characterize brain-language relationships and determine how these relationships are altered in neurological disorders affecting speech and language. He received his M.D. from Rush Medical College in Chicago. He also completed a residency in neurology there. He then did postdoctoral training at the NIH.
So please help me welcome Drs. Shekim and Braun.
Dr. Shekim: Hello, everybody. Thank you for coming. I will speak a little bit about the communication process or the communication disorder, and Dr. Braun and I will field questions later on.
We come to you from NIDCD, and we come to you from both the intramural side and the extramural side. Like the rest of the institutes at the NIH, our mission is to support discovery in the service of public health. Specifically, within our institute, our mission is to reduce the burden of communication disorders on individuals who have them.
As you see in the film, Jean Do had a stroke. And you see a communication disorder that is acquired, not so much in the context of childhood, as a lot of people may think of communication disorders.
So here you see a man who had a stroke and had this locked-in syndrome. He had intact cognition, he had intact language. However, because of his paralysis, he was unable to do any other form of communication but signal. And in this way, with his speech pathologist, he signaled, when she scanned for him, the letter that he wanted. It’s a direct scanning system.
Now we have alternatives. Since then, we have possibilities of using assistive technology, as in the case of Stephen Hawking, who’s almost locked in, if you know. But he uses technology and a computer and infrared light available on his eyeglasses and uses a computer to access.
So there’s low-tech and there’s high-tech in availability of assistive devices. Much depends on what the person can do in terms of access to the switch or any way to access computers.
I can speak about augmentative alternative communication when we have questions and answers. I can speak about the film when we have questions and answers, but ’really all I wanted to say is that there are individuals who can assess and evaluate a person who has a communication problem. We are fortunate to have collaboration outside from the American Speech, Language, and Hearing Association who have the exhibit desk, and if you’re interested to learn more about that, you can explore that desk. And we can take questions and answers.
Dr. Shekim: Okay. Did you see the shift in the film from the beginning, when everything was in the eyes of Jean Do, and then, after that halfway through, the camera shifted? That was, I thought, very artistic, how everything at the beginning was what he saw outside.
I want to say something about the film in the sense that yes, it is based on the book The Diving Bell and the Butterfly. It is, however, a drama. I know that the speech pathologist, the real speech pathologist, was not very happy with the script because she felt it didn’t really portray much of what happened.
There were a couple scenes in the film that really were drama to the film. The scene where Jean Do dictated that he wanted to die—that, in actuality, did not happen. And so that was dramatization in the script. Jean Do only had two children, not three, in real life.
The part of the film that I stayed puzzled with, and I wasn’t able to ask people who knew him directly through the French embassy, was why is it that somebody can afford to have a Maserati but only have a low-tech communication system in the middle 1990s?
That to me is a puzzle that remains unanswered. Because the mid-1990s is also the same time when Stephen Hawking had his computer in the United Kingdom, and Stephen Hawking has had access since the 1980s. So to me, in terms of access, that’s a puzzle of the real social aspect of his life that I don’t know.
Dr. Fuchs: Dr. Shekim, could you talk in more general terms about the importance of communication in terms of just his overall mental health? Once he devised this means to communicate, what do you think that meant for his quality of life and his mental attitude?
Dr. Shekim: I believe that communication is the key to life. I mean, communication is how we create meaning and how we connect and how we create a meaningful life. I mean, that’s my passion. So of course, I would say that once he had a communication system, he was able to express and he was able—if he had a partner who was there to ask him the question —control his environment.
The scene with the soccer game: I don’t know if that actually did happen, where somebody just turned off the TV without asking him, without awareness of his needs to even ask him, “Do you want to TV on? Should I turn it off? Do you want to watch that channel?” And that’s evident in his chapter on Sundays.
For people who are interested in exploring this more, reading the book is more true to the memoir of Jean Do. There’s a whole chapter on the alphabet; there’s a whole chapter on the beauty of communication.
Question: Excuse me, I have a question. You refer to Jean Do as an adult acquired inability to communicate. Have you seen the film My Left Foot with Daniel Day-Lewis? He was a person who could not communicate who was paralyzed from birth or early childhood and he could only move his foot. Is that similar to this?
Dr. Shekim: I did not see the film My Left Foot. Maybe I could address something related to the question.
Dr. Fuchs: He had cerebral palsy.
Dr. Shekim: So you can have a communication problem that is developmental, that’s part of a condition that happens at birth, and that is true. And then, in this case, you have an acquired communication problem where the person was cognitively intact and able to speak, as you saw.
Question: How are communications set up with a child who’s unable to speak?
Dr. Shekim: The same process of rehabilitation that you would do with an individual as a child.
Question: Oh, like with Helen Keller?
Dr. Shekim: That, or you have assistive technology for those who are not speaking, and you can have a picture symbol and then teach language and then teach the alphabet.
Comment: Thank you very much. And I greatly appreciated this opportunity to see the film and have the issues explained by somebody from NIDCD.
Question: I have a question, please, two questions actually. First of all, pardon my ignorance. Who is Stephen Hawking?
Dr. Shekim: Stephen Hawking is a professor in Cambridge. He has a disease that is neurological called amyotrophic lateral sclerosis (ALS). As his disease progressed, he lost more and more function. He uses a computer that is donated by Intel. He wears glasses and an infrared light, and he’s able to control and speak independently through a voice synthesizer. He uses high tech that gets updated every year and a half to two years. He’s a cosmologist, physicist, gravity expert.
Question: What did Jean Do die of?
Dr. Shekim: I would imagine pneumonia. That’s probably what killed him.
Question: When he first had the stroke—I missed the very beginning. Did they believe that he would ever speak or breathe—well, he was breathing on his own, wasn’t he?
Dr. Shekim: He was in a coma, and he was breathing. There were scenes when he was on mechanical ventilation and then he was breathing independently with his tracheostomy and then back again, he was on mechanical ventilation. It alternated throughout. But if you see him sailing or when he was on the water, he was breathing independently. There was a time when he was strong enough to be off mechanical ventilation.
Dr. Braun: He died of pneumonia because of generally impaired breathing. He was breathing normally spontaneously because the lesion in his brain stem was at a point above the respiratory centers which drive the neurons in the spinal cord that move the rib cage or the diaphragm.
Question: So that was something they knew right at diagnosis, that he would be able to breathe on his own but he would never speak on his own?
Dr. Braun: Once they realized he had locked-in and they realized where the lesion was, which is in the pons, in the base of the ventral pons, that’s part and parcel of the syndrome. Breathing is normal and he was really breathing—he may have been on ventilation at the very beginning following a coma, but he was breathing spontaneously throughout the film.
Question: And locked-in syndrome is different from someone who has a spinal injury and is paralyzed?
Dr. Braun: Someone who has a spinal injury lower down spares the cranial musculature to the larynx and the lips and the tongue and the jaw that support speech. People who are quadriplegic often can speak. His lesion was a bit higher up in the brain, but it did not impair the reticular activating system that is a bit higher in the pons and in the midbrain that activates the cortex. That’s why he was conscious and cognitively intact.
Comment: Thank you.
Dr. Fuchs: Any other questions this evening?
Question: Why didn’t they use Morse code? It’s much more efficient.
Dr. Shekim: I don’t know. There are actually different scanning systems that are even more efficient that were used in the U.S. in the 1970s. She organized the alphabet and frequency of occurrence, which is good, but she still used a serial scanning system where she had to go the whole alphabet. One could organize in what’s called DRO column scanning and put everything in the upper left quadrant that is most frequent and it would cut the time. But that is what they used.
And so the question is, again, access around the world, access of knowledge around the world, access maybe within France. He was in a rural hospital up north. I don’t know. It is a drama. It’s a film.
Yes, the research that we support now, in terms of advances—I mean now with technology, there are great opportunities. There’s a field that’s called brain-computer interface in assistive technology. NIDCD as well as other institutes at the NIH support a research portfolio in that area where people are beginning to see if one could access computers through access to signals from the brain, therefore controlling environments and possibly have a voice output.
Question: I have a friend who had jaw surgery and had her jaw wired shut. This was about eight years ago. What was so amazing to us is that the doctors and the nurses in the hospital didn’t know how to communicate with her. Is there anything being done to educate the general nurses and doctors in hospitals on how to communicate with someone who’s not easily able to communicate themselves?
Dr. Shekim: I can speak about what we did at George Washington University Hospital in the sense that we were constantly doing education for all people, not only nurses, all individuals in the healthcare team. We educated them about communication and access to communication and how you facilitate that—whether the person is deaf, of a foreign community where they don’t speak English, or have their jaw wired. That’s a challenge constantly to do that.
Comment: Thank you for your communication.
Question: Hi. I had a question about the past of this condition. In the movie, even though it was low tech, the patient was very intelligent, and he devised this system of communication and there were people around him willing to listen to him and everything. That was in the 1990s. In the past, would people have been literally locked in? Even though you could have your mind and memory, there would be no way to really express yourself?
Dr. Braun: Yes. There are some horror stories about misdiagnoses of this syndrome in the past. It can be diagnosed very easily if you know about coma and somebody seems unresponsive. You simply ask them to look up with their eyes and look up. Those are processes that are spared. But very often those have been missed in the past. It’s described really for the first time in the neurological literature in the 1960s. So yes, it can be missed, and that can be catastrophic.
Question: Curious to know. A very close personal friend and neighbor had a severe stroke. I’m curious to know whether there’s a physiological definition of locked-in syndrome versus a psychological instance. For periods of time he just refused to speak. I don’t believe he qualified, because later he came out of it and did speak. So is there a physical definition?
Dr. Braun: Yes, it’s pretty strict. There’s a wide range of unresponsiveness that goes through the various types of coma, vegetative state, and so on. This syndrome is unresponsiveness—and quadriplegia with spared voluntary eye movement. It’s a very well-defined diagnosis. Voluntary mutism in somebody who is depressed, who has had a stroke and doesn’t speak, can have a whole different set of causes.
Question: A friend just told me that her mother and grandmother had aneurism-stroke events. She’s in her sixties. I have a grandparent that was lost at forty-five of a cerebral hemorrhage. I’m wondering two things: (1) What’s the level of genetic component in these things? (2) Is NIH discovering anything new besides diet, exercise, nonsmoking, etc., in terms of stroke prevention?
Dr. Braun: There are certainly genetic predispositions to some of the conditions that make it more likely to have a stroke, and most of those are metabolic or cardiac. As far as diet and exercise, I don’t think anything can improve on that. There are certain genetic predispositions that are being looked at individually. These are perhaps rarer.
I should make it clear, though, that this condition is a very vanishingly rare condition. It’s not the typical type of stroke that you see. I’m sure it’s not the type that you’re talking about.
Question: I have a question. PET scans have come a long way. Is there anything in the way of computer technology that is looking at communication, be it colors or something that you can use to scan the brain, so people can communicate more efficiently?
Dr. Shekim: This is what I was mentioning earlier in terms of the brain-computer interface. There are lots of labs around the U.S. as well as in Europe looking at ways to get the signal from the brain and then having an interface to the computer. Using EEG, ERP, or any other tool will allow the individual to be able to access and be able to output. So that science is moving.
Dr. Braun: So basically, the technology that’s being used for this is electrophysiological techniques. It might be implanted chips within the cortex or EEG which can be picked up ambiently in an easier way than you can a PET scan or an MRI a scan.
Question: There are basically two kinds of stroke, I guess: one caused by blood clots and the other caused by bleeding in the brain. Is either one of these more related to this locked-in syndrome? Secondly, does the length of time between the onset of the stroke and the treatment have a bearing on whether you have a severe condition such as locked-in syndrome?
Dr. Braun: Sure. Well, first of all, this syndrome can be caused by a clot or ischemia due to disease of the vessel itself. It’s caused by either process in a very circumscribed area of the brain, in the basilar artery that goes to this portion of the pons that I was talking about. This condition is generally not hopeless, but the prognosis is poor. But it’s been shown that if you treat it very vigorously with multi-modalities within the first month, you’re more likely to recover. You can realize that the smallest type of repair or recovery, e.g., the ability to move a finger, operate a digital device, and swallow and prevent pneumonia, which is typically how these people die, is a significant improvement. You get in early and treat it as aggressively as possible.
Question: This is actually a followup on the previous person’s question. You know the movie Strange Days, a very underrated science fiction movie about brain interface? Can you bring movies like that into this? Can you talk a little more about this brain-machine interface?
Dr. Shekim: Somebody in the audience can talk more about it—but I don’t know if he’s willing. He’s coming down. It is my colleague, Roger Miller. He is the program director of the Neuroprosthesis Program at NIDCD. He is our expert on brain-computer interface (BCI) technology.
Dr. Fuchs: I saw Strange Days. I’m a fan of science fiction, but I don’t think we’ll broaden the definition of this program enough to bring in science fiction. So maybe some other program, some other day.
We also have lots of requests to do documentaries. We have not yet broadened the definition for this film series enough to do documentaries. We do dramatic depictions. We’re getting enough very interesting documentaries lined up that we’ve thought about doing another series or dedicating one summer just to documentaries. It’s possible that we’ll do that with science fiction films one year.
Dr. Miller: If you wanted to make a communication interface that made use of the computer, you can start with something that was very simple. For example, one of the early ideas was that if somebody was locked in and maybe couldn’t move their eye, maybe if they just thought about eating a lemon—something very, very sour. Imagining having a fresh lemon in their mouth might cause their pH to change. You could put a pH sensor in their mouth and kind of get a yes-no, a system as simple as that. What we’re looking for in the future would be something that would sit outside the skull and record volt potentials (EEG waves). When you meditate, you kind of change the rhythm of your brain. A computer could use that.
Another system would use volt potentials based on a light and where you focus on a computer screen. So there are some noninvasive techniques that could be used to figure out where somebody was looking on a computer screen or to actually alter the rhythm of their overall brain activity to drive a computer cursor up and down. There’s a group working on that in upstate New York. Jonathan Wolpaw is the leader of that, if you want to Google it when you go home. He has a system called the BCI 2000. It is kind of an open system. There are a number of groups that can get their hands on the hardware and they actually have competitions where they have people trying to communicate through this interface. They are actually trying to modulate their brain rhythms, and this interface then needs to be decoded. It can be used for a spelling interface, much like you saw a spelling interface in this film.
But the real future lies in something that is a little more invasive. It sits inside the skull, and there will be some electrodes about 1 mm long. About 100 of them sit inside the motor cortex. If you go home and Google “cyberkinetics” you can read about some of the clinical trials that are under way with people that are paralyzed. I think about ten people have received this recording electrode. It’s based on a long history of primate research. Andy Schwartz is one of the researchers in Pennsylvania who’s published quite a bit on this. If you Google brain-machine interface or brain-computer interface, you’ll probably pull up quite a number of articles. This has gone on in the popular press in quite a few newspapers.
For the primate studies, where primates receive an electrode array, it’s noninvasive. It just sits in the motor cortex. It’s right in the area of the motor cortex where brain activity would be modulated when the monkey is moving its arm. First they train the interface to try to figure out what the monkey is doing. Once the code that they’re using on the computer is kind of good, the monkey can then start using that to start driving the computer interface and can move a computer cursor in two dimensions. It can move a robotic arm in three dimensions.
The most recent work from Andy Schwartz is showing a monkey actually being able to move a piece of fruit to its mouth. Initially, this is kind of based on the innate code of the brain for making limb movements. Very quickly, the monkey’s brain learns exactly which neurons are being recorded from and is able to just leave its hand where it is on the table. It doesn’t actually have to move its hand and have the robotic arm move. The robotic arm moves just based on what the monkey is thinking it wants the robotic arm to do and has learned the computer will do—if it thinks this way, the robotic arm will move.
NIDCD is very interested in taking that technology to the next level, where somebody who is locked in like this would be able to receive an implant such as that and learn how to control this interface. Then we’ll be able to go through initially probably a spelling interface like this, but something that was state-of-the-art.
If you’re interested in a state-of-the-art computer interface, you might want to go home and Google the word “dasher.” Dasher.org is the web address. This is similar to the spelling interface where the most possible letters were first. You can play with it on your computer with a mouse. You drive the mouse up and down, and the computer always drives the cursor across the screen. Different letters come into play. Based on the letters that you have already selected, the relative probabilities, and the relative targets, the more probable letters have a larger target and appear on the right-hand side of the screen. You can kind of play with this very simple computerized interface.
NIDCD envisions supporting research where one day, we’ll have something like that that really makes full use of the BCI that would allow somebody to speak with a much higher rate, a much higher reliability, and maybe even with an electronic voice.
Dr. Fuchs: Thank you very much. Before we thank our guests this evening, I’m going to correct something I just said. Because now thinking back over the fifteen years, I can think of three exceptions where we’ve shown a science fiction film. Jurassic Park, Gattaca, and one I’m so sorry about, I’m too embarrassed to mention so I won’t mention it. What a mistake that was. But Gattaca and Jurassic Park I think met our criteria.
So if you do have some science fiction films in mind go ahead and throw them in. I just can’t promise we’ll give them equal consideration, but we will look at them.
Next week, I’d like to invite you back to see the 2006 film Canvas. This is a film about a wife and a mother who suffers from schizophrenia. Our guest speaker will be Dr. Daniel Weinberger, chief of Clinical Brain Disorders at the National Institute on Mental Health.
Please help me thank our guests tonight from NIDCD. |
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