Aug 232018

Help required in the Tyne area.  Please if there is any chance of solving this from a distance get in touch.

This message has come from the girl’s speech therapist.



Jude Pullen from Inventing the Impossible/Big Life Fix suggested that I contact you in regards to a plea for help with a young girl who is locked in and needs to be able to communicate via BCI.

I have put out a lot of enquiries and to be blunt, I just need this to happen! She is an only child, 12 years old and we feel has some understanding of what’s going on around her. She has no reliable and consistent movement we can make use of except perhaps, moving tendons in her forearm when attempting to activate a sensor switch.

Please see my original email below.

Jude suggested I mention key words such as – ‘must be good at making stuff, basic electronics, Arduino, Raspberry Pi, and can 3D print / design’. I hope that makes sense to you!

Again, I can’t begin to express how grateful I would be if you could help – we are completely stuck. I’m sure the family would support any TV/media coverage to promote yourselves?!?

Thank you,

Jenny (Speech Therapist)

Hi Jude,

I am a Speech and Language Therapist working in the Royal Victoria Infirmary in Newcastle. I’ve been glued to the programme Inventing the Impossible and have been bowled over by the clever engineering used to improve people’s lives.

I am working with a 12 year old girl who presents as being ‘locked in’. She has been with us since November 2017. We cannot make use of her eyes or any form of consistent movement for communication.

I feel she at least understands yes/no questions and could make choices from 2. There is significant atrophy on her brain so we don’t know how much she understands beyond that – we just don’t know.

I wondered if you had any in-roads in regards to using Brain Computing Interface (BCI) technology for communication? She is an only child and I am desperate to give her parents some good news re communication but I feel I have tried everything I can. Obviously, I am really, really hoping that you and your team could please help us to tailor-make some technology to help us access her understanding (through auditory feedback and prompts and voice output) to help her express herself and at the very least, take some ownership of her care via yes/no responses and basic choice making.

I can’t begin to tell you how much this would mean to her family. Hoping you can help.

Thank you,



Speech and Language Therapist Acute and Neuroscience


Level 4 – Block 2

Clinical Resource Centre


Queen Victoria Road



0191 2824701

Tues, Thurs and Fri



  18 Responses to “Locked in syndrome – Brain Computer Interface”

  1. It seems there are also a number of EMG detectors that can be easily interfaced to Rasberry Pis and they may be worth investigating as they are not too expensive. However it may be that they are not sensitive enough.

    If anyone is interested in going together to meet them and to see the problems first hand. We will hopefully be able to get a better idea of the challenge then. After which we can do some research of possible technology solutions and maybe then set up some tests with the patient.

    I am in York and can get up to Newcastle fairly easily if anyone else is also available I could even pick them up on the way. (assuming they are on the way??). I think with a problem like this two heads may be better than one.

    • Good man Rupert but I’m unsure what the protocol is for these ‘Can you help from a distance’ HQ posts.
      It is outside of the normal Remap model for allocating a job that would cover you insurance wise etc.
      I should just ask HQ the best way to proceed here before you implement your admiral wish to drive up there E.g. it would seem better that you attend with a panel member from Tyneside.

      It will be a very difficult case and as you will have read there is significant shrinking of the brain and no coordinated movements detectable so any amount of technology is unlikely to help but we must try.

      • What I’ll do Graham/Roo is discuss it with Sophie next week when we’ve given people the opportunity to throw ideas and any relevant expertise in. Like Roo, I could potentially get up there – but it will be easier if there is someone willing and able to take point on this locally. Insurance won’t be a problem I don’t think – as we are one charity and our liability insurance is quite broad.

        There is also the question of what the clinical prognosis is in this case, as you correctly point out. There has to be something there that can be detected clearly. In the case of Kate Allatt, she told me she was aware of what was going on around her and able to communicate by blinking, and that is widely reported for locked-in syndrome – but doesn’t seem to be the case here. If locked-in is suspected, I would have expected EEG tests to have been done as part of the diagnosis anyway from a bit of reading up.

        • Agreed Ian
          It seems that such HQ posts needs a moderator (you in this case, ta 🙂 to pull things to a conclusion and some sort of contact into the local panel if possible from the outset. Often these posts are from a Remap engineer requiring support and the above naturally then occurs,. But directly from a referrer leads to a discussion that is enthusiastic & worthy but without clear direction to an end point- that would be my feedback to HQ please.

          • I am still keen to get involved, but I agree we need to appoint a coordinator for this case. This could be any of us, but preferably one of the Tyne panel because of geography,
            If no one else wants to do it I will volunteer. Hey, i’m only 100 miles away 🙂
            Anyhow the client/s sound anxious for someone to help!

  2. If it is possible to see or feel the very slightest of controlled responses on the surface of the girls skin then these will be much preferable to today’s brain sensors. Strain gauge sensors can detected such movements and amplify them to be buttons (relays). BUT you do need to be sure such movements are real and not imagined / involuntary.

    As a spin off from my Remap work I did design some kit to do this for a client a few years ago and it is now a commercial product called a MoJo. Check out I don’t want to get hopes up often when working at the edge of detecting microscopic human movement can have a disappointing outcome.


    • Presumably it might be possible to devise some sort of evaluation test though Graham? So let’s say you have several sensors under several fingers, it might be possible to isolate a barely perceptible movement of one particular finger by the patient, ruling out involuntary movements?

      • Ian although such sensing is way beyond mechanical switches its not magic it will not detect movement you cannot see I’m afraid so that is where to start.
        Here is a dirty video that should appeal to the Engineer in you….


        • Yup – cracking bit of kit that Graham 🙂 Begs the question whether it might be worth experimenting with the sip/puff unit too in a case like this.

          • 🙂 its quite handy for difficult cases especially with the support for Arduino built in. Bit of stealth product as Ive never really pushed it just use it for my own jobs.

            Yes the MoJo can support sip & puff MojoXP (P for pressure X for channel count) where the pressure channel counts as one channel.

            I very much suspect that sip & puff would be a non starter for locked in syndrome as mouth/lip & close breath control is commonly lost with less severe disabilities.

            Im puzzled how this discussion becomes real action – has it been forwarded to a Tyneside Remap panel * who will drive it onward with suggestion such as we have here?

            Dunno – Mystery to me?

            *Is there one? GDPR seems to stop me knowing at the moment as such info was on the HQ website – less Im been dumb:-/

  3. I’m assuming this kind of hardware could give you an appropriate signal to start with.

    I’m afraid that I’m on the other side of the country, but happy to assist if there’s anything I can help with (3d printing etc).


  4. This sounds very challenging and I may need help from others. I am certainly able to build devices to perform the yes/no type of responses required, however my knowledge of detecting muscle activity as well as BCI technology is scanty at best.

    I would certainly be happy to have a look in the first instance.

    If any one else up North would like to get involved I would be happy to work with them.


    • Thanks Roo – I think what we probably need to do is see what ideas we can rustle up between us on here and then discuss best approach for pooling skills and resources with Tyne group.

  5. Hi Jenny,
    it’s probably a long shot but if the girl can voluntarily move a tendon in her arm but attempts to to use that to activate a sensor switch have been unsucessful, may be it would be possible to detect the electrical nerve impulses that control the muscle? I don’t have medical training but it may be that an orthopedic or neurological expert would know if this might be possible. If this could be done then it should then be possible to use the detected output of a nerve impulse sensor to operate a switch. If this worked then you could have a code of two or more switch operations in succession to indicate yes/no etc. using a Raspberry Pi or simple electronics.

    The only other option I can think of is to use an eeg (electroencephalograph) to detect a voluntary response to a sound etc.

    • Looks like it’s possible to get EEG brain sensor technology off the shelf these days Chris.

      It begs the question whether a headset like this, with a bit of custom code or a basic analytic tool (like this one ) might make it possible to read signals. Interpreting them in such a difficult situation as this is a separate matter entirely of course.

      At $99 it’s certainly in the sort of cost area that might be worth a punt.

      Another idea I could kick off is I spent three days at the national stroke forum some years back, where our Remap stand was next to that of a very interesting and inspiring lady called Kate Allatt who is very well known as having made a recovery from locked-in syndrome and may be able to give us pointers on where to find specialist advice.

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