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Hi, everyone! My name is Steve St. Clair and welcome back to Lingraphica radio. Today we have a special guest, Dr. Richard Steele, a Chief Scientist at Lingraphica. Welcome, Dr. Steele. How are you?
Very well. Thank you for having me here.
Well, you're obviously a very important person at Lingraphica. You're one of the chief thought leader also, Chief Scientist and chief thought leader, I think. You've been working with people with aphasia for over 30 years, haven't you?
And what I would like to talk about today is what all that work has led to and what you've seen happen over that 30-year period and where it has been and kind of where it's going, kind of a high level look at helping people with aphasia re-enter their communities through speech-generating devices and the kind of work in Lingraphica does. So, if you would tell us over about your personal history and how you first got interest in aphasia and, of course, Lingraphica.
Well, my own background is an eclectic one. My undergraduate work was in physics. I have an undergraduate degree from Stanford University in physics and then I went on to do my graduate work in Slavic languages in linguistics and those reflected areas of particular interest to me physics and the abstract modeling that allows people to make predictions from scientific hypotheses and theories that are advanced and then the work in Slavic languages in linguistics -- I've always had a great interest in languages, in communication, in cultures and for a period of approximately a dozen years, 12 years, I was teaching language and linguistics in colleges and universities. After that period of time, I decided that I really wanted to make a change in a way that would allow me to combine my areas of particular interest in a way that would be even more satisfying to me than working within the university and so I made a move out to California, which is where I grow up and also where I did my undergraduate work, and I started looking around for a position that would allow me to combine this interest in languages, this interest in cultures, this interest in individuals people, this in my interest in teaching and then helping people and also this interest in abstract modeling and I moved back to the Palo Alto area which is where I did my undergraduate work and I began meeting with colleagues and friends in networking and so on.
And among the various places that I made contact with, I found a spot which was a particular interest to me, it was called the Rehabilitation Research and Development Center and it was a joint Stanford University and Veterans Administration Medical Center operation and this was kind of like a high level think tank and it was charged with looking for opportunities to use emerging technologies to improve rehabilitation and once I started talking with the people there, I thought, "Wow, this is really for me." I could see that I could combine my interest in technology, my interest in abstract modeling, my interest in helping people, my interest in language and so, and so I began working there and I did work on a number of different projects. I did zero and specifically on aphasia right at the very beginning, but they all involved technology, they all involved communication, they all involved language. And in presenting these various conferences talking and meeting with people, I became familiar with work which had been done in the previous decade during the 1970s at the Boston Aphasia Research Center which is situated within the Veterans Administration Medical Center in Boston, Massachusetts. And there were people there who had looked at improving rehabilitation approaches for people with aphasia using icons, but this was at a time before the Apple Macintosh was available, the time before really personal computers with graphic user interfaces as we know them were widely available.
So they had done their work using index cards and drawings on this index card and they showed that this was a very promising approach and when I met with the people who had been involved in this original research and told them about where I was working and discharged to look for opportunities to explain the merging technologies, there was an immediate recognition on all sides that this represented an opportunity for taking the next step, which was taking the findings from the earlier work that have been done and beginning to look to see whether those might be implemented within a computer environment and if that was the case whether there might be additional benefits that could be developed for the people with communication disorder, so we began collaborating. And that really was my introduction to the opportunities, specifically for using computers and aphasia rehabilitation.
So that was probably in what, in early 90s?
That was actually in 1982, so that was just about 30 years ago.
Alright. Okay. Do you remember that amazing Macintosh commercial that came out when they launched the -- wasn't it great? (Laughs)
I certainly do. As a matter of fact, interestingly enough, the very first work that we did on a -- what one would now consider to be an early personal computer with a graphic user interface was done on the predecessor to the Macintosh --very few people know this, people in computer science would be familiar with this, but Steve Jobs at Apple had produced a previous machine which was called the Lisa and was about twice as large as the -- that Mac Classic that came out in 1984 with that terrific commercial. It was about twice as larger and it had some other idiosyncrasies to it, but it was really the first opportunity to implement our vision on something which was like a Macintosh and when the first Macintosh and the Mac Classics that we are all familiar with became available, we took the work that we had done on the Lisa and we met with the person at Apple that was a fellow named Gary Moulton who was, at that time, the head of the Disability Solution Group at the Apple facility in Cupertino and we showed them what we had done and they actually donated five of the original Mac Classics to us to help support this work in further.
That's great. I didn't know that part of the history. That's very cool.
Yeah, it was then -- there was a lot of excitement. I mean, this was something that would catch people's attention right from the very outset.
Yeah. So where do you go from there Dr. Steele? What happen next?
Well, we began to do pilot studies using these Mac Classics that had been donated by the Apple Corporation, the Disability Solution Group, and the purpose of the pilot studies really twofold. The first one was to replicate the studies that had been done earlier during the 1970s at the Boston Aphasia Research Center to show that the kinds of benefit that had been documented earlier held up in this new environment and it has to be said that that was not a foregone conclusion because of course operating a computer, a personal computer using a mouse pointing at things, clicking on them, dragging and so on, those all involve higher cognitive functions and in working with people with aphasia, of course, we're working with the people who -- for the most part in the United States, statistically speaking anyway, these are people who have had strokes and who have brain damage, you know lesions areas where the brain cells have died as a result of their strokes. And so it was an open question as to what effects might those -- that brain damage have on their ability to operate an advanced piece of technology like a personal computer. So we did these pilot studies and indeed we were able to replicate a finding showed that the kinds of benefits that the people, the subjects that they had worked within in Boston, were found also in those that we were working with in Palo Alto. We additionally, we're able to demonstrate that they were able to master the necessary abilities, the capabilities to use this personal computer, the Macintosh.
And then in addition we're able to document certain kinds of additional benefits that equip from using a computer. So this would be things like automatic housekeeping tasks that the computer could provide a certain consistency time after time in finding material when you're in a computer environment. Because of course if you have a stack of index cards and your various vocabulary items are in this pile, the stack of index cards and it's essentially one word per index card, either you have to go through the entire index card pile in order to find a particular thing. If you just throw them back on the pile once they've been used the first time or you have to go through a housekeeping task of -- but making sure their file back where you got them from in the first place which that extracts the cost of -- all of that. All of that could was precluded. It wasn't necessary in the computer environment, it could take care that for you. So we were able to show additional benefit as we had hoped from introducing these materials in the computer.
And then so through that you were able to show effectiveness in certain ways in improvement and patience, correct?
Well, right. And of course this were pilot studies as I have mentioned at the beginning and the purpose of the pilot studies was to show that the approach maintained its promise, the promise that we have been documented in the earlier phase when it was conducted using icon index cards and that there were further pathways that were opened up that looked promising for delivering additional benefit. So having demonstrated those two things then what we did, and there was a team and this was very much a team effort, multidisciplinary group of people that we assembled. So there was myself and I was the principal investigator and my background as I mentioned before is in linguistics, physics and some pedagogy language teaching, it's in communication and language use pragmatics, those sorts of things semantic and can go on and on. But anyway that was my area of expertise and of interest, but, we, in addition we had a neurologist on the team, we had a speech language pathologist, we had a computer graphics specialist, we had a programer who was on the team as well and we worked as a group to identify where it looked like there were benefits that could be achieved and then we discussed how we might go about trying to realize the potential and then we would brought up a specification for what it is we wanted program then programmer would take that and everybody would be involved in the critiquing and the development, the evaluation of it.
And then once we had a working prototype developed, we would take that back in to the clinic and we would work with people in order to see first of whether with the hope for benefits where in fact actually realizing them. Secondly, where additional benefits would likely would be forthcoming and then with having done all of that we wrote all of that up in a request for funding and we submitted it. Actually, we submitted proposals to various places but the one that provided -- and we got support from a number of places but the one that provided the line share of the support was the rehabilitation research and development service of the Veterans Administration. And so we made a proposal for a multi-year study and it was on review, it was approved and it was funded. And so between the period of 19 -- I'm trying to recall now when it began, I think it began in 1980 -- late 1984 or 1985. But between the period of 1985 and 1990, we had this funding and support from the Veterans Administration Rehabilitation Research and Development Service and then additional smaller streams of support that were made available by Apple and by some charitable organizations and we continued then in a more formal supported way to develop the promise of the technologies.
Well, and with your work with Veterans, you obviously -- this group had all sorts of issues that they had encountered in the field in serving their country and had head injuries and other sorts of issues that way, correct? So you had a large contained group of people that you could work with. Is that -- was that -- that had to be a huge advantage for the development.
Yes. That's exactly the case and I should mention that we were involving veterans not only as the Palo Alto VA Medical Center, but we also had -- we were collaborating with the Martinez VA Medical Center and with the medical center in Boston, Massachusetts and some of the people who had been involved in the original work. So we had multiple sites that were providing candidates for participation in our work.
Okay. And so as this progress, was there learning about the therapeutic learning impact that these early devices had on people's ability to re-learn language?
That's a very good question. It was something of a surprise to us, I would say it wasn't a surprise in the abstract. That is to say everybody knew, everybody understood that if you worked with people to help them communicate better in any of a large number of ways that they would typically improve, that there would be improvement that were noted. And that is something that speech language pathologists really have understood from the very beginning. The main surprise was the magnitude and the pipes of improvement, that was unexpected. Because previously all of the improvement that had been noted when people were involved in a sort of long-term intervention, they were of modest size that is the magnitude in the improvement was modest and they didn't fundamentally change the pipe of aphasia diagnostic category of aphasia, there would be improvements within diagnostic categories. And there were several different diagnostic categories of aphasia too that capture significant differences between subpopulations of people who have brain damage and as a result they have aphasia and related disorder. Now, what we showed was that the improvement could be significantly larger than they had previously been thought and this was true even in what's called the chronic stage of aphasia, this is the period after the first six months following onset has passed.
That first period is often referred to as the period of spontaneous recovery and even if there is no intervention whatever, it is expected that people will improve during that first six-month period. For various kinds of physiological reasons, after there is insult to the brain, there is typically a swelling to the brain, edema. You can have various kinds of effects. You can have impaired communication between various parts of the brain which resolves merely as the swelling subsides as the initial shock recedes into the background, people do improve even if there isn't act in intervention. Following that period though of the initial six months or so just period of spontaneous recovery, is this long tale which typically will last if the person has had a stroke and has these disorders that they are contending with this long tale last typically for the rest of their lives and it's referred to often as the chronic stage of aphasia after spontaneous recovery has run its course. And it's generally believed that in the period had used to be generally believed that during the period of chronic aphasia that the basic outline of a person's communicative profile, their abilities, their limitations and so on were pretty well set and that if they improved, which they would as there were an intervention. It would be within those particular confines.
Well, so one of the things that we've documented in the work that we've done since starting out is that this is too narrow view, there are indeed individuals for which that is true but it's not necessarily a foregone conclusion that it will be true. Many people in the chronic stage of aphasia can make a significant improvement sometimes surprisingly a large improvement of an unexpected type and we're still in the process of trying to understand. And when I say we that is to say the entire field of speech language pathology is still in the process of trying to understand what are these you know, what do these potentials represent and how can we identify prognostically candidates for significant additional improvement? What kinds of interventions have the best outcomes for improvements of this type and so on? But it's a very promising development and I would say that the studies that we did, particularly in the first decade where we were reporting kinds of results and magnitudes of results that were surprising too many in the field of speech language pathology who weren't in the position to observe them first hand. Those things are fundamentally over time, I think have reshaped thinking about what are the purposes of rehabilitation with persons with aphasia? What are the opportunities for them? What are the tools? When did they use? How were they used to what effect and so on.
We've met probably -- and we're relatively new to this. We've met probably four or five people with aphasia and the one common thing they say is practice, practice, practice. Do you think -- do you see that yourself? And I know it's hard to make blanket statements, but practicing the language therapies is just simply using a speech-generating device does is a form of practice, correct?
Oh yeah, absolutely. And practice I think is even a narrower term that I would use, although practice is a very useful technique, but it really is a question of sort of experience and stimulation and sort of engagement as an active agent in the rehabilitation process. That's really what sort of like I believe really what drives those people who become engaged and who realize the potential for improvement. There had been studies, there is a particular approach that's being used in rehabilitation, not just in speech language rehabilitation but in physical therapy and so on which is called constraint-induced therapy and this one of the principles of constraint-induced therapy is indeed exactly what you said which is massed practice. And both in speech language therapy and in physical therapy they have shown and indeed it has been documented that practice, practice, practice, massed practice if you will, can lead to significant additional improvement, but I think that above and beyond merely practice is the appropriate selection and presentation and exploitation of the materials, the types of interactions that people engage in.
In the case of the sort of brain damage that lead to aphasia and related disorders as I mentioned before, there is typically an area in the brain where the brain cells have died and lesion in the brain. And this is an area which is typically filled with cerebrospinal fluid, the brain cells are not gonna be growing back. A person in this condition does not have the same brain that they had before. They have something which you know, they're living with brain damage and unless and until we develop a magic wand that allows us to grow back the brain cells in that area and we integrate them into the neural networks in the way that they were before when the damage was incurred. Unless and until we have that, we're not going to see people returning to exactly what they were before they had a stroke. On the other hand, outside of that damaged area, the brain can be full as fully engaged as it was before the stroke. The brain cells are alive and your own networks maybe working, and one of the things that I believe causes some of the deficits and also causes some and a lot of frustration in people with aphasia is that because of -- a large part of their brain or the vast majority of their brain is still right there and is working and is available for recruitment and so on, they have this feeling, "Why should be able to say this word. I should be able to communicate this. I should be able to produce this sentence," you know, "I should be successful in their communication" and then they try to do that using the very kinds of sort of like neural network activations that they used before they have the stroke.
And they are often subject to finding that it's not successful because the lesion in the brain is interrupting some critical pathways that has to be engaged and so it feels like they should be able to do something but when they try to do it, they find that it is not working the way that it was before. Well, in the case of the source of stimulation that I'm talking about which are multimodal stimulation which involves the sounds, the acoustics signal that can involve text, it can involve pictures, it can involve animations, it can involve old photographs, it can involve videos you know very, very rich a set of stimuli that we have to draw on that these can be presented. They can be shaped and presented in such ways that what they do is they help people to re-stimulate those portions of the brain that are still online and are still functioning and often they show a person a -- how shall I say -- give the person the experience of success in producing a word that when they tried to do it on their own that they work because of this additional external stimulation which you know, draws on all of these various modalities and simultaneously and under the person's own control and in a way that we're presented it, we deliberately go through a process to attract their attention and focus it and heighten their arousal level before we present these materials to them.
When you do all of that very often people find that, for example, they can say a word that otherwise they are unable to or once they can say that word then they demonstrated it themselves that the capability is not fatally impaired to produce that word. And they can become then -- very, very strongly and focus engaged in sort of working on the practice and the reintegration of the various available neural networks and a way that makes it functionally available and useful to them once again. And so yes to practice, but it's practice of very specific sort of like right things tailored for them and identified by them as being the sort of sweet points to focus on it this time.
So, not to simplified, but what struck me was you were saying that was there is a moment of satisfaction when they use the device and are able to complete and get the sense of satisfaction from actually communicating getting around in the neural network.
Absolutely. And very strikingly, we see that satisfaction not only in the case of the individuals themselves but very, very, very frequently on the part of their wives, their husbands or significant others or children or the close neighbors and friends until other people who observed them. We say it's not infrequent that people will become very emotionally charged up. When they see this happening when a person for the first time can after their stroke I love you or for the very first time can say the name of the child, their spouse or someone else that's important to them.
It's where the phrase were beginning to draw around a lot in Lingraphica is first words. And the importance in the built up energy that these people with aphasia must have and then the release of that set of first words. What are some others just like side road if we could, what is the mother first phrase, his first words if you recall people using.
Well, it varies by individual and by their, you know, interest levels and their history beforehand. I remember, for example, there was one woman that we were working with who was religious and for a day, you know, a very religious way observing then and for her reading the bible was a very, very important thing and so she found in working with our tools and our materials that she was having greater success in engaging with the materials that were so important for her to read. That was one type of example to give a very different kind of example but similar sort of you know, response, emotional response. We work one time with a CPA, a Certified Public Accountant, and for him a moment of great elation was when for the first time he could repeat the word amortization.
I'm troubled with that one.
There you have it. (Laughs)
Right. We've heard some funny ones too, we heard there was a particular person that who couldn't wait to tell his spouse what particularly meal he did not like being served to dinner every week or something like that, I think it was meatloaf or something but anyway. I find some of that fascinating those moments when they're first able to re-enter their communities using these devices as a wonderful moment. So where do see the future Dr. Steele? What it's evolving towards? Especially with Lingraphica in you guys have the therapy apps coming out and the top apps would have therapy apps and helping people with aphasia in general. What's next?
There's so much to do and it involves really, you know, us, plus everybody else who's interested in and involved in working with people with aphasia. There is really a world of activity that has yet to be, you know, completed but as I said before, identifying the kinds of people who are candidates for significant additional improvement prognostically identifying who is a candidate for which types of improvement, what materials would be useful for them? How to achieve those kinds of results, ways of identifying the appropriate sorts of tools that would be useful to them in a functional way, both useful to them and satisfying to them in a functional way and improving their quality of life. Setting up kinds of networks of various sorts, some of these might be community based, some of them might be based over the internet that provide people with support, provide them with guidance, provide them with ideas, provide them with opportunities to share information and experiences with one another to empower people with aphasia, to become effective agents on behalf of rehabilitation of the disorder. Aphasia, I would point out, is a very, very common in the United States. There are something like 80,000 to 100,000 perhaps new cases of aphasia every year. That's the incidents of aphasia and in prevalence, that is the number of people who are living with aphasia and most of these are people from a chronic stage of aphasia who maybe months or even years post onset.
It's currently estimated that that's over 1 million and that could easily double within the next 10 or 15 years. Given, you know, it's partly dependent on improvements in medications and improvements on long-term rehabilitation, regimens and improvements on emergency interventions and so on but the population is aging, the demographic, indicator of increased risk of stroke is higher age and so as the population as a whole ages and more and more people are at risk for having strokes and certain percentage of those strokes will affect areas in the brain and leave them with aphasia. So all of these areas are open for contribution and perhaps I would say the most striking thing about aphasia is the degree to which it is not really well known given the numbers of people that have it. Multiple sclerosis, for example, is a disorder which affects probably between 5,000 and 10,000 people in the United States and yet because of very effective techniques in communicating about it and then in trying to support research to remediate in so, it's far more widely known than it is of aphasia and I think a part of the reason why aphasia is not better known that it is, is precisely, I mean it's almost in the definition of aphasia. It's an acquired disorder of communication, so people who have had strokes and have aphasia they have difficulty communicating getting the word out about what it is that they're contending with to the rest of the population.
Yeah. It's a quiet issue, isn't it?
Yeah. Well, we're hoping to change that. (Laughs)
Yes, absolutely. And I think things like this show will help that, people will find it.
One thing I notice that's really interesting about Lingraphica is that as you -- and we're talking about the history of the company, and as you guys have built up data and experience and work with so many people over the years -- I'd love to know the numbers it must be staggering, a people with aphasia. You've learned from what you've done and you've added to it and now you're taking some of the approaches like projection outline images, everything making a sound or word being spoken when it's touched. I've seen an actual side by side comparison of other devices with yours and it's a very engaging experience. And I think one part of the future that we could certainly count on is it trying to continue to add to those and carry those things that are working in to the future and I see it in the apps as well, the top apps would have therapy apps.
Yes. Yeah. So that's exactly right. And of course these terms like projection, there are somewhat technical terms and the experience of seeing it is, I think, a really important one because it can be describe in words but it doesn't carry nearly the impact. When it is describe in words as one person actually experiences and sees and gets to respond, not particularly true for people with aphasia who have the disorder because of the way and which has been designed to attract the attention, redirect the attention of the person, focus the attention and then deliberately put them into a heightened state of arousal physiologically, I mean that in a quite a literal sense. You can demonstrate using galvanic skin response and by doing that we put them into a privilege state of receptivity at the point then, then we present these other kinds of, you know, stimuli the sound, the graphic, the text, the animation whatever it might be.
Wonderful. And we can count on that moving forward as well. I've seen it already and it's continuing to go. So, to wrap this up, do you envision a future time where patients can literally practice therapy differently than they do now?
Yes, I do. And actually I think that the very notion of therapy will evolve and become a sort of richer term than it is generally -- the term generally conjures up currently. I expect that it will involve as it does currently sometimes speech-language pathologies, soon maybe interacting face-to-face or live perhaps at a distance but it can also involve such things as self-guided programs or semi self-guided programs, it can also involve as I mentioned earlier the inclusion in the larger networks and this might be based within the community or it might be based around the country in using distant technology to communicate and so on and I foresee all of that in the future years, you know, and when I started out back in the 1980s therapy was essentially understood the term if you use it with reference to speech-language pathology. The therapy was essentially understood as a typically a speech pathologist sitting in a treatment room with a person with aphasia and engaging in activities using designed designated therapeutic material and since that time in the 1980s, the term has already evolved to include a whole lot more than that including group therapy and community based support groups and other kinds of activities.
Then they all encompassing nature of that in the way that your devices and your application of how they work includes SOPs, includes caregivers and it makes it easier, I mean, I love the new apps in part because they are entering a platform that a lot of people have in iPad and they can just sit now with someone anywhere they might happen to be and have it with them, so more and more people are getting included through these technologies.
Yeah. And I think that as things evolve that this will be a pattern which one absorbs more and more that is really the key is going to be to involve all of the appropriate people at the appropriate time in the appropriate way. And exactly what those words mean would be something that we learn as we do as we move forward, but it's not just a particular person, type of person at a particular time doing any particular thing with someone else in a particular setting, end of story. It will be much broad.
Right. Alright. Well, Dr. Steele, thank you so much for giving us so much of your time today and I love to tell the audience that...
Well, thank you for all of the questions...yeah.
No, absolutely and I love to the audience to learn more at aphasia.com, that's for Lingraphica website, aphasia.com. We're very active on Facebook and Twitter now and we love to engage the audience anyway they can. If they have further questions for Dr. Steele, don't hesitate to post them either on the contact tab at the website or the phone number or through Facebook or if you want through Twitter, anywhere they want. So Dr. Steele, thank you again.
Thank you very much. Bye, bye.
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