I hope you don't mind me asking a couple of questions as someone who hasn't suffered an injury. Someone close has suffered an accident and as a result, has received trauma to the brain as well as the inability to move much apart from his arms and head with limited capability. He is also non-verbal as a result.
He is also unable to interact with his environment. If he wants the heating off, or the TV on, or the lights to be off, he has to wait for someone to ask him those specific questions and then answer using que cards. I'm wondering - what can I do to make this as easy as possible for him? I'm looking at ways to provide this type of interaction with his environment - is this something you suffered with as a result of your injury? What do you wish those around you did for you?
Many thanks, and a happy Christmas and new year!
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mudbed
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Hello mudbed, welcome to the forum, it's very friendly and helpful here, and I hope someone can respond with some help soon. When the holidays are over, and their office opens again, you may want to try the Headway helpline as well ( they work office hours) they are very supportive the number is 0808 800 2244 ( they reopen on 3rd January)
There are various apps which can be put on a tablet to act as a communications board. You can look online to get an idea, though Headway likely has some recommendations.
The idea is there are categories with pictures and most used responses.
Getting some smart lights or other smart home devices may also enable him to turn light on and off himself.
The tablet would need to be rigged to where he could reach it.
This whole area is called something like adaptive technology.
I would imagine not being able to adjust your position in bed would be a big thing. You can get pretty sore or stiff being in the same position. Is a physio or OT seeing him?
If he is in pain, a quick way to ask for medications. That's an obvious one.
I would maybe cycle through styles of music, podcasts, etc to see if he likes listening yo something - his tastes and tolerances may have changed.
He may find being dark and quiet a welcome thing - and not know to ask for it.
Reassurance in a calm and matter of fact way that you'll help him sort it.
That's what comes to mind at the moment.
Hang in, this is not a sprint and things generally go slower than we would like. Remember to take care of you, too, so you don't burn out or end up feeling resentful.
And yes, you can also ask Headway about support resources for you.
Unfortunately, he isn't able to do these things himself. He can't extend his arms of fingers, they're pretty much locked to his chest (although can do small movements) and also unable to talk. We have to use yes/no cards when asking questions to know what he wants (and is able to respond pretty accurately). He's in a care facility so he get 2-3 visits a day from staff including physios.
I ask because i'm looking at building a personalised app for him. One that uses eye tracking and a YES/NO prompt on a tablet and then link it to Alexa to send commands based on his responses to allow him to manipulate his environment that way. I'm just wonder what would have been super important to people during their stay so I can include that for him.
hi I may not be quite help to your question but my husband had a brain injury 2years ago and the first 6months wer the hardest as you mentioned using cards that what I was using and also yes and no questions my husband could not communicate at all he also had no capacity when he was tested on it at the rehab hospital a year went into it and he still could not communicate he has speech session who discharged him saying he would not be able to communicate because of the brain injury
come August 22 just after the speech discharged him he actually started to communicate even tho it was not clear but he was trying now Dec 22 he can actually tell me to switch the light of or its cold or r the heaters on etc even tho it's not great but I sort of can understand what his saying
keep trying and never give up because they can recover they just need time and yes it's a very long and slow journey but give it time
get a white board and let him communicate with writing even if you don't get a response back keep trying I'm going to be honest communication apps did not work with my hubby I don't know why everything was like manually from me
Hello, the recovery journey is as tough for family and friends to cope and adapt to as the main sufferer. Can he move his head at all? There is a girl at the local headway centre who can barely move but she can nod her head and has a communication machine which responds to her tapping a button with her heard to move the cursor. You could also have a list of questions that he usually asks on a regular basis and ask them whenever you see him so he can do yes or no cards. The headway team will be able to help you. They're brilliant
He is able to move his head but only left and right. Communication right now has to be done via the yes/no cards as his ability to move his arms is extremely limited. If he wanted to push a button he couldn't, and he can't articulate his fingers.
Hi, I’m sorry to hear this and completely understand how it feels to want to help communicate.
My son was very similar and we received support from our local assisted technology team who provided a device with eye gaze and a switch (which can be positioned to access more easily)
Please let me know if you need more information as we’ve used most accessible software with very limited mobility.
Morning BirdsongBlue, if you don't mind me asking, how long did it take for funding to get that?
I'm looking to make him a personalized yes/no app with alexa integration so he can at least turn on and off smart sockets and stuff like that, and if others in the care home want it they can also have it for free, and this would be done via a tablet. Is there anything you suggest I implement into the app? Is this something you'd have found useful at the start of his journey?
Speaking to others, I can see fatigue is a huge problem with TBIs, and isolation has a big effect on their mental health. Mental health services also are typically done via talking, so it's quite inaccessible. Also, can you really feel at home if you can't even turn the TV on/off? I have a feeling I could give to others even without speech issues, but if they've broken a couple bones and can't get out of bed. These are the sorts of problems i'm looking to solve.
Very much appreciate your input, I hope you have a great new year!
TBI left me the same initial, friend who had stroke. Less able after, is amazing what we get back!! So be hopeful! Brain apparently needs time to re- wire!! Y never know what’s possible, 22 years later and apparently I look normal??!!! Good luck, support us always here. Happy new year!! Xx
Hi mudbed. Some thoughts - would an iPad mini and Apple Pencil2 help? Appreciate he has difficulty articulating fingers but if he could hold the pencil he might be able to tap in a box or circle on the iPad screen to answer yes or no to questions perhaps? This might also help his brain to start new learning behaviour and help speed re-wiring. The iPad could be mounted to aid positioning and keep it stable whilst the pencil could have a cord attached to make it easier to locate or perhaps be strapped to his arm/wrist.
The app you are planning sounds really interesting - if you need help with beta testing I'd be happy to.
I appreciate the suggestion - unfortunately any hand held device is out of it. Even the prospect of having a big button he could hit with his hand is drawn out because just with what he can do, it's not possible.
I'd greatly appreciate any help testing the app if we build it. I have some eye tracking software already, just need to wrap some features around it. My biggest worry is more around low lighting and different head angles as well as calibration. He won't be able to initiate these things himself.
I'd be very happy to help test. Concerning the low lighting issue, could it be on a timer perhaps so every couple of minutes a light comes on to check for response? There has to be some technology available that could help.
It'll reduce accuracy, but theres mounted lightings you can have for the tablet which right now is the current platform, as far more tablets are sold than laptops (not including the 2nd hand market, unsure of figures there). It might just be a condition that we say you have to have a lamp or something if you want this to work properly.
Inaccuracies shouldn't be a problem, though. The plan is to have YES and NO taking up half the screen each and a cursor showing where the device thinks you're looking. So granular control isn't necessary. And then select by just staring at it for an amount of adjustable time. I'll keep you posted - I have a friend working on an AI PhD who said he might be able to help. Barring that, I have someone else who might be interested. If nothing comes of it, it'll be down to technical limitations.
I had a thought when I read this .If you use this Search in Google it might help you on your path 'a device with eye gaze and a switch".
I know it might sound strange but it picks-up sites with accessible technology links that you could possibly access or use.
There are devices called eye gaze that already exist.Possible integration or co use with your sytem?
A chap in the bed next to my husband used such a device after being paralysed from the neck down.You might already know all this, but thought I would pass it on in case.I sincerely wish you all the best, and hope that your endeavours are fruitful.
The intention for the app wouldn't be to necessarily replace the need for a more advanced device such as Eyegaze. It would be more so that there's something to use whilst funding for such equipment is being decided. In fact, my friend got denied such a device - and his accident happened in October 2021, so it's been a long time. I also wasn't aware but 50% of families in poverty live with someone disabled (unsure on what the disability split is) so if it was useful, maybe it would help there.
I think that video you linked is an interesting one, I may suggest it to his parents. In fact, it may be a better application of the idea i'm talking about.
In fact, thank you a lot for this, I think we will still make the app but use this style of working. Should make it a lot easier to control for the user by doing it via blink. Eye tracking needs calibration and all this type of thing. I think just using blinks will allow more granular control as realistically, using eye tracking we'd have to limit a lot of functionality.
Even if it cannot help your friend, it might help others! So... Please do continue your endeavours with the app.It is good to know that some of my research has come in handy , even though it was not useful for us.
I did see the eye gaze being used quite often , when I worked before. October 21 Is not that long ago, in terms of brain healing though.
My husband took years to regain skills we take for granted. It is a very long and slow process, but patience and persistance can sometimes be rewarded with little wins.that add up to huge steps.
It is also so very helpful to have someone on the outside like you. Friends are very important indeed.Good Luck, it is a fabulous thing you are doing.
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