Untested Novel No-Tech Communication System for Non-Speaking ALS Patients including with Diminished Eye Gaze Control

All you need is your experience, pen or marker, and paper…
[[note from later correspondence: …It seems transparently simple to me in concept, if not in practice, but existing caregivers would seem best places to know what things to present to her in which wordings for inclusion. It does strike me that something I’ve left out is the use of a mirror and/or self-viewing smartphone camera to select, try, practice, and record what the signal expressions would be.]]

My sister has advanced ALS. She has not been able to use a Tobii for a long time now, and is now having increasing difficulty even answering binary questions with eye-gaze. The spelling card, apparently current State-of-the-Art, has always been intensely difficult & frustrating even for those well-versed (my Mom & her husband & perhaps one or two of the nurses) [and is hardly attempted these days, I think, though I do not get there often enough, so there may be times]. {for n00bz, the binary questions are answered looking to far right or left of caregiver’s or other’s outspread hands}

I have conceived of a potentially revolutionary and simple {?} system to improve her communication abilities. The root and most basic idea involves the use of 6 (+ or -) facial expressions to select from 6 options three times in sequence. Potential extensions and further descriptors to follow further down the post. My sister stated confidence, I think, that she could do this when I asked her about a brief description some weeks ago. All that is required is the ability to do different recognizable facial expressions on command.

[Later note: Also, I firmly believe that Mom & Brother-in-Law can devolop this without me. Although I’d wanted to start by now I have my own struggles… and it was only a recent conversation that I realized it had to be posted online.]

The system springs out of my work on a new sort of oracle, creativity tool sort of thing while I was away at [unspecified] treatment recently. It used coin flips and dice to select from a group of common (mostly) symbols I picked out to build random strings. Still mulling a lot of the changes and further work on that. But the 6 sided die, and the sequence 3 coin flips (binary 0-7) formed into this one day while I was on one of my regular short walks.

In essence, the ability to make six ‘letters’ by face confers the ability of any patient/caregiver pair to choose from 6-cubed statements (216). Occurred to me yesterday that the most useful extension would be on 216 member phrase book for care-related statements and a separate 216 membered phrase-book for conversation.. To choose the phrase book, either the left right eye-gaze, on inquiry, a smile (some people don’t do smile on commnad we..) .. perhaps a triple eye blink for the preferred option. Much easier to do one eyeball question than a string of 25 with many caregiver misguesses.

These would not have to be memorized, because as with the spelling cards they could be grouped in 1+6 pages split into sixths with each block holding six statements (or you use 1+6+36 pages but that would be a drag for in-practice use development and notes could go on a while). Dividing into meaningful categories could help in practice. Not everything, breaks neatly into nested 6 membered arrays, but practice should lead to ‘directional’ memory w/o memorization. One could meaningfully discuss these things more easily across different patients and care teams by calling them by directions instead of named expressions, which will be various and vague, especially with different ability.

In essence, the hexal triplets (three expression codon; uh, I mean ‘word/statement’) are assembled into determinate ordered layers. The first is the . . . . . The first expression is the top level category. In using ‘directions’ as the translateable ‘letters’ instead of natural language categories, they do not have to be ordered by meaning groups at all. See what works. ‘directions’ are easier to remember than hexal digit strings, I imagine.

I’ve discussed this with a few people, but have made very few notes. I believe that none of it could be locked up as intellectual property, though software applications are elsewise. And even more non-deterministic modes of communication using poetry atomic units (pick less determinate things than phrases, symbols, single words, images. develop games?) though some things (such as psychotherapy for ALS patients) might be approaching something resembling more a [url=http://www.catb.org/jargon/html/B/black-art.html]black art[/url] / [http://www.catb.org/jargon/html/B/black-magic.html]black magic[/url] than a lexicon.

I imagine the existing in-house knowledge/data for facial recognition could be quickly put together by the wizards of silicon valley or Tobii to bring this to life as a tool for unaided computer speech (once caregivers and patient had trained the machine. remember, only a six membered array is required) after some memorization. A sort of “ASL for ALS” [American Sign Language] although more limited. One imagines non-speaking patients being able to skype one another, or with grandma. The combination with a STOP character (perhaps three blinks?) would enable 4, 5 and 6 ‘letter’ words, enabling up to 55986 ‘words’ (albeit slow). One imagines a separate native language developing in its own lines to work within the restrictions. One imagines textlators to IRC and web. One imagines everyone will have different phrase-books at the beginning, though so this may not be yet. One imagines the adaptation from the computer or phone being tweaked/trained to the patient'(s’) gross deliberate expressions towards being driven by rapid micro-expressions, though I don’t know how micro-expressions work in ALS.

And adaptations will later need to be made as capacities weaken.. So the in-home use of modular ad-hoc phrase-books will normally be required again later, even if they are dispensed with by software for less late stage patients at some point.

Anyway.. untested.. But Ashley asserted that she could manage selection between six symbols by facial expression. All you need is your experience, pen or marker, and paper…

Brought to you by the lately-inattentive creator of [url]http://www.psychicfuguestudio.net[/url]

I’ll check back and answer what questions I can. I have a variety of projects that I can never move fast enough, and job search and whatnot to attend to though.

[[[just sent to alsforums.com, but adding here in case of unlikely event moderator would try to steal it]]]

[[rest of top note: I would like to build something for Ashley, but I find it difficult to make the time with the pressure of job search, my own languishing projects, just daily upkeep & ‘mental maintenance’. It seems to me that it is silly for everyone to wait to begin reaping the benefits until I can manage it. It seems transparently simple to me in concept, if not in practice, but existing caregivers would seem best places to know what things to present to her in which wordings for inclusion. It does strike me that something I’ve left out is the use of a mirror and/or self-viewing smartphone camera to select, try, practice, and record what the signal expressions would be.]]

{{{extra note: in addition to the moderators not allowing my post on alsforums.com, I have just discovered (2-9-17) that I have been banned with no reason given and when ban lifted ‘never’. Seems rather aggressive. I did put ‘Untested’ right in the title. So you see what at least one anonymous person thinks (no ban issuer screenname give). Everyone I’ve spoken to who I know has been much more encouraging… Read on Curiosity app today that Special Relativity was hated for several years before it was accepted not to say that will definitely happen here. We’ll get around to trying it soon enough unless Ashley vetos it early on}}}

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5 thoughts on “Untested Novel No-Tech Communication System for Non-Speaking ALS Patients including with Diminished Eye Gaze Control

  1. i don’t understand this perfectly, but i get enough to realize how remarkable it is that you can design such a system. i hope it works out for you & your sister. keep us posted on developments & successes.
    ALS is Lou Gehrig’s, right? a terrible ailment, there was a famous photographer, Kim Yeong Gap, who had Lou Gehrig’s, his story is well known to a lot of Koreans— he took many beautiful photographs of Jeju in the 80’s.

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    1. Still have not gotten to work at trying it out yet. alsforums.com moderators never posted it tho. Just a little bit ago I found that they permanently blocked my home IP “no reason was given” “when will this ban be lifted: never”… even if they think it’s unworkable that seems pretty aggro

      Liked by 1 person

      1. actions speak louder than words & unfortunately scientists seem squeamish when people have ideas that haven’t been tested. however, it doesn’t sound from your ideas that you have it in mind to start administering untested drugs, so the least the forum could have done was advise you or ask you some questions. seems as you say ‘pretty agro.’

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    2. I was just reading an article on the bus todayon the Curiosity app that Special Relativity was widely hated or thought implausible too and he took ten years to really be found right by the wider ring of scientists.. not that that would necessarily happen to me..

      Liked by 1 person

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