Hi Reddit! I am an assistive technologist at The Royal Hospital for Neuro-disability in London – We are one of the biggest and most well known centres in the UK for the rehabilitation of people with complex brain injuries, including locked-in syndrome, minimally conscious state and vegetative state.

If something like a stroke - which can happen to anyone at any time in life - leaves you unable to speak or move, my team and I figure out ways to use smartphones, tablets, computers and sensors to give you your independence back.

You can watch a video about some of the tech we use here: http://bit.ly/bawvideo. It shows you how the device you watch the video on can be used to help someone with an extreme or rare brain injury.

This week is international brain awareness week, so I'm doing this to do my bit. So, go ahead, AMA.

Proof: https://twitter.com/RHNcharity/status/312151209115021312

EDIT: I have to go now everybody, but thanks so much for a very interesting session. Sorry to anybody I didn't get to answer.

Comments: 109 • Responses: 35  • Date: 

Salacious-18 karma

What one technology (that would help you with this job) do you wish existed, but it doesn't (yet)?

RHN_Gary21 karma

Well, I think probably Brain Computer Interfacing (BCI). there are lots of companies and researchers developing this, and there are working examples, but is is still not a very practical solution for disabled people to use. It has amazing potential though and will be very exciting to watch it having an impact over the next 5 to 10 years.

JustLetMeComment3 karma

That's right, there was the guy who used EEG to tweet a few years ago, right?

RHN_Gary6 karma

Yes, I think I remember that. But current systems, and particularly those that hit the media, usually use either invasive surgery or a full set of electrodes in a cap that can take up to an hour to apply. In the current state of technology a person who can move their eyes only will get much better functionality from an eye-gaze system than from brain computer interfacing, although it is of course vital that the research and trials of BCI continue and make it better.

sduport17 karma

What is the most amazing thing you enabled a patient to do through the use of technology?

RHN_Gary23 karma

Thats hard to answer. What is mundane to an able bodied person is amazing to someone who has been locked-in for some time. Sending an email, speaking using a computer, just expressing yourself. These are everyday things to us, but if you have been in a hospital unable to do any of these for many months, it is amazing. Apart from the mundane, we have enabled people to get involved in creating music and art using technology and that is amazing.

catherineelaine10 karma

What are the kind of things people say when they first communicate after a stroke or other receiving therapy for a neurological condition?

RHN_Gary19 karma

Well, it will sound like a cliche, but people do often want to tell their relatives that they love them. For someone who is Locked-in, they may have been aware of their surroundings for some time but not able to make their feelings known. They also want to ask questions about what has happened to them.

lagnaippe8 karma

I am working with a client that has quadrapalegia due to ms.I got her involved this dvr. They are coaching her to use voice activated software on a laptop. it is going slowly. Lots of barriers. Do you have any tricks or can you give her inspiration?

RHN_Gary10 karma

Voice activated software is always going to be difficult for someone with such severe MS as speech generally deteriorates too. Speech recognition software can handle different ways of saying things, but it does work best if their is consistency, ie the person says the same word the same way at most times. Someone with MS is likely to have fatigue meaning that speech may be different at different times of day. You can set up different 'voice profiles' at different times of day which sometimes helps. You might be better off looking at switch scanning access.

miss_jwo8 karma

Is there a particular operating system that the people you work with find easier to use?

RHN_Gary15 karma

We tend to use Windows. For the very specialised access we do, there is more software for windows than for Apple OS's, Linux etc. I'm talking about switch scanning software and eye-gaze software in particular. The hardware for eye-gaze technology is also very Windows based at present. Having said all that, the iPad is changing everything and more and more apps are becoming available for iPads and iPhones. Its not quite as capable as windows for special access just yet, but it won't be long. The iPad has been amazing however in bringing down costs and raising awareness.

ginnieboo327 karma

Just want to champion technology in this vein. I worked with non verbal people with autism who relied primarily on communication devices, called Lightwriters. They have the technical complexity of a calculator, require a prescription, cost exorbitant amounts of money and can have a 6 month waiting period. Ipads are replacing Lightwriters at a fraction of the cost and with more capabilities. It makes a world of difference to our clients and those of us who work with them.

RHN_Gary5 karma

Lightwriters have served the disabled community amazingly, but you are right that their time has probably passed for most users, in their current form at least. They have been around in various forms for 25 years or more, and for many of those years there was very little else for people to use. They were invented by an engineer who was disabled himself and the company that make them have been one of the most user-centred companies in all of assistive technology. The move to iPads and associated technology is a godsend for disabled people in terms of cost and functionality, but I hope that a side effect is not that it becomes unsustainable for companies to continue to innovate in this area.

miss_jwo1 karma

Do you not get worried that the ipads can get stolen? Or that the technology gets stolen from the user?

RHN_Gary3 karma

Yes, that is a risk, but we just have to handle it as best we can. iPads are a double edged sword. They are more desirable to people who may want to steal them, but they are also cheaper to replace if they do get stolen. A big 'traditional' communication aid might cost many thousands of dollars (or pounds!) but an iPad is a few hundred dollars. if the personn uses a wheelchair, which most of our patients do, then we would try to ensure the device is firmly fixed to the wheelchair.

nazbot7 karma

Can you outline the strategies you use to help give people hope?

I'm aslo curious how these things affect relationships? Do people generally stay with their partners or do things generally disintegrate?

RHN_Gary6 karma

Re giving hope, I think showing them what technology can achieve and seeing other people with disabilities getting on with their lives are very powerful. It is always a balance, we want people to be motivated to engage in physiotherapy and speech therapy to improve their actual speech or movement, but we know they may not get back every ability they would like and will need technology to compensate. Timing the introduction of technology is very important.

Some relationships do fall apart unfortunately. Some appear to become even stronger. Probably more disintegrate than in group of people without disabilities.

IAMSOFAKINGWETALLDID7 karma

Thats awesome that you take the time to help others in need. What events have happened at or around work to make you rethink your own life and how you live it?

RHN_Gary11 karma

Well, it certainly makes you aware that life can change in an instant, no matter how secure you think you are, so you should make the most of every day. Many, many of our patients have set off for work in the morning expecting to be home to their families in the evening, but tragically something has happened and their lives are changed forever. Hopefully we can help to restore some level of family life for them again.

edcox5 karma

What's been the most unexpected outcome of your work?

RHN_Gary10 karma

I suppose seeing people make a much better recovery than we originally expect. It is very exciting. We have a number of units for people at different levels of ability and sometimes we will see someone move all the way through, from the units assessing whether people are in a vegetative state or not, on to the unit for complex disability rehabilitation and then on to our 'transitional rehabilitation' unit where they are much more independent and preparing to live independently in the community. Seeing someone go from potential vegetative state to independent in the community is brilliant.

eosph5 karma

How has open source (android?) and hardware helped with your cause?

RHN_Gary8 karma

I'm a huge fan of Android myself, and apps for communication and environmental control are increasingly becoming available for Android. however, the iPad is still way ahead in this field. I do see Android rapidly catching up though. There is a growing market for Home Automation using both iOS and Android devices to control items around the home, lighting, entertainment equipment, curtains, doors etc, and this will hugely benefit people with disabilities. Similar systems for disabled people have been around for many years but by making the systems mainstream they are become more cost effective and slicker.

NarcoleptcSmurf5 karma

Wow, what you do is amazing! Thank you for all your work and please keep it up!

Question: for when you develop something to help someone in a vegetative state, are they receptive of it? Do they actually know how to use it? And what exactly does 'it' do?

RHN_Gary12 karma

Unfortunately for someone in a vegetative state there is very little we can do with technology as it currently exists, they will depend on good nursing and medical care but won't be able to use the type of technology we use. What we can do is use technology to help distinguish between people who are in a vegetative state and people who are in a minimally conscious state and this is done a great deal here at the Royal Hospital. People in a Minimally Conscious State are able to respond to their environment, but this is inconsistent. Technology can help to motivate and facilitate then to make responses so that their real level of consciousness is accurately assessed.

ATPmurica5 karma

I work with AT in the US, although more on the wheelchair,access, support surfaces etc. Our system tends to sell Aug. Com. devices and access controls more direct from the manufacturers which limits my experience with them. One major differece between the US and Europe, especially the Scandanavian countries, that I seem to see is a distaste for AT of all types. I want to blame Scooter Store and the likes for making it all seem like a toy or trivial, but that might not be fair. Needless to say, things like competitive bidding here are driving the relevance of our services into non-importance.

My question is(questions are), how do you advocate in your system the cost savings and life improving benefits of the technologies? Is your system largely funded through non-profits and charity? or are the devices actually funded through your National health services? As healthcare changes in the US, Obamacare/national/whatever or not, I see A/T as playing a major role and we must advocate for it here constantly. I'm always curious to learn new ways to explain to people what these devices can actually do.

Also, not to steal any of your thunder, but Lee Woodruff and Bob Woodruff have a very intersting story about TBI. He was injurred as a reporter in Iraq and given rather extraordinary care and has since had amazing recovery. Long watch but one of the best speaches i've seen on the subject: http://www.youtube.com/watch?v=Z2j-i-JIibs

It's awesome to see this on here really. I know that people like you, the therapists, the specialists rarely get the credit you deserve. You have to control expectations, fight for funding, and deal with family who are often angry and unstable over what has happened. What you do looks amazing and I will definitely be reading more!

RHN_Gary1 karma

Our system is changing a lot right now. In fact on 1st April the UK is introducing a huge change in how all health care is commissioned and paid for. How this will affect assistive technology is still largely unclear, but I am hopefull that there will be improvements.

In theory, the NHS should be paying for most communication aids and environmental controls that people need, but in practice we still don't really know how it is going to work.

There has been a huge amount of political lobbying in the UK, particularly around communication aids, and this does seem to be helping to get commitment from the government to fund these devices. Every week in our government, there is a session called Prime Ministers Questions, where elected lawmakers grill the Prime Minister about what he has been doing. Yesterday, he was actually asked a question about communication aid funding in the UK, in parliament. This was really exciting progress and high profile for us.

robbielolo4 karma

Do you work with kids or adults?

How do you feel about PECS or facilitated communication?

RHN_Gary5 karma

We work with adults mainly, but we do provide some technical support to other similar services for children. Facilitated communication is a very controversial subject. If at all possible I would prefer not to use facilitated communication, but I recognise that everyone is an individual and has different needs. When we are trying to determine what level of consciousness someone has, we need to be very careful that any purposeful responses we are documenting are coming from the person themselves and not from a carer or relative whether intentionally or unintentionally. This is for the assessment stage. At a later stage, for promoting quality of life and interaction with family on a long term level, facilitated communication may have a role to play.

sunsetsong4 karma

What did you do to get where you are today? Which degree did you study etc ?

RHN_Gary3 karma

I think I answered this to MoreCanadianBacon above while you were posting your question. Basically degrees in Psychology, Computer Science, Occupational Therapy, but more recent courses would be different.

ginnieboo324 karma

My sister had a TBI/spinal injury from a car accident (18 months old) that left her with limited use of her body. She is now 29 and has permanent brain damage but is moderately functional (sorry for the outdated term). I am constantly searching for tech solutions to increase her capabilities. She has some visual impairment which makes it difficult for her to rely on her eyes for detailed visual commands. We are looking into Dragonspeak but I'm wondering if there is anything you are working with that you could recommend. Thanks for everything you do and for coming here to share it!

RHN_Gary1 karma

Its really hard to give an answer to such an important question without more details and its probably not the right place to give more details here. I think Voice recognition will be very difficult for someone with both cognitive and visual impairments to learn, but that is not to say it shouldn't be tried. probably ongoing developments in ipads and similar technologies are the best bet. There is so much development going on that even if nothing is working now other things are coming along soon. There is always hope.

I don't know where you are, but in the UK we have a series of exhibitions for disability equipment that are aimed at users, families and professionals, they are called Naidex (I don't know why !) they are very useful for people to go along and see a whole lot of technology suppliers in one place and get to try things out. I don't know if there is something equivalent where you are.

Sorry if that is not a particularly helpful answer.

invisiblefriends3 karma

My brother was paralyzed in an accident, and has found the iPad to be invaluable for communication and control, with the use of a wrist-attached stylus, chair-attached mount, and an app to control networked computers.

Are there some other "must have" consumer-available products you would recommend for an incomplete quad or similar injury?

RHN_Gary1 karma

I think the consumer 'Home Automation' market is going to become invaluable for people with disabilities. Controlling doors, windows, curtains, TV's, lights etc has been possible for very many years, but with very expensive and clunky purpose built equipment. The home automation market for non-disabled people is already bringing down the costs and making the user interfaces, via iPads, Andoid tablets etc much better.

I don't want to promote particular products really, but Apple have recently started selling lightbulbs, made by Philips, that can be controlled from your iPad via a small wi-fi hub. They are pretty expensive (for lightbulbs!) but cheaper than an older environmental control system would have been. I wouldn't particularly rush out and buy them now unless you are a techy geek, but it illustrates the way the whole world is going and how people with disabilities will benefit from tech made for the mass market.

Exantrius3 karma

I work with students with disabilities in community colleges, so basically the minor leagues of what you do (nominally assistive technology, I'm more of an alt media specialist.)

I often work with students using Kurzweil 3000, livescribe pens, zoomtext, jaws, and other adaptive software. Currently I'm working with iOS devices for portability.

What assistive technology have you worked with for a disabled individual have you looked at and said "Hey, this would be helpful even for a person without disabilities?"

What AT do you think is really handy that just isn't used by the community at large? Are there any "off the wall" products you use to provide accessibility that is outside the norm?

RHN_Gary3 karma

Eye-gaze equipment is really incredible. Being able to select things on screen just by looking at it. It is very accurate, and for most people very quick and easy to set up. The big drawback at present is cost.

I think we will probably all end up controlling our Smart TV's by looking at them, which may sound wierd but will again bring the cost down for people with disabilities.

The Samsung galaxy S3 smartphone apparently won't dim the screen if the user is looking at it (I haven't used one to be honest) and the upcoming Galaxy S4 is rumoured to have more eye-tracking features, such as scroll by eyes.

Eye-gaze control is a bit off the wall now, but you'd better get used to it, it is coming to a consumer device near you. soon !

toomanymuthauckas3 karma

what is your response to the popular notion that people who have TBIs, or become profoundly disabled via an illness or an accident are better off dead? (I'm thinking of movies like Million Dollar Baby and Whose Life is it Anyway?). Would you say that most of the people you work with are happy (whatever that might mean) to be alive, and how does the adjustment process work for someone who is newly disabled?

RHN_Gary7 karma

I've worked here for 17 years and I've been amazed at how few people over all those years have said they would rather be dead. In my experience people generally want to continue with life, whatever abilities they may have. This doesn't mean that they don't have huge adjustment problems and depression for short or long periods, but they generally want to carry on.

How the adjustment process works differs hugely from person to person, but it does take time and people need support. I suppose it depends mainly on their previous personality.

MoreCanadianBacon3 karma

[deleted]

RHN_Gary3 karma

I kind of wound up in this field by accident, but I'm really glad I did ! Out of school I did a psychology degree, because it sounded interesting and I didn't know what I wanted to do. I've always been a techy nerd and while studying psych I became interested in using technology to help with neuro-rehabilitation. I then did an MSc in Computer science and finally trained in Occupational Therapy ! A long and winding road ! I started psychology more than 20 years ago, so I think routes into rehabilitation are more structured now. In the UK you would look at Clinical Psychology, but it is very competitive to get into. You might also look at Occupational Therapy, Speech and Language Therapy or Clinical Science.

wlu563 karma

I have many questions,hope you dont mind answering them. First of all thanks for your work. ___________________________________________________________________

1 What are the interaction between the patients family and you(you as in the whole team) from the moment they are admitted to your facility to the moment the first communication occurs between the patient and their loved ones?

2 What is the minimal educational qualification required to get into your(yours in particular) field?

3 Which do you think of the two is more important in aiding patient recovery technology or compassion?

4 any instance when families are frustrated that they feel you are not doing enough,when truely,you are stretching tech?

5,any instance when your tech failed?how did you go about comforting the family when presumably they had TOTAL faith in your co.

RHN_Gary4 karma

Wow, lots of questions...here goes...

1) The patient's family are extremely important in the whole process and we try to involve them as much as possible. Inevitably there will also be families who have disagreements with what we are doing. We try to use patient centred goal-setting and if the person is unable to express what they want to achieve we need to use the family to provide the answers. We do however, have to be aware that in a few cases the patient may be someone who did not necessarily agree with their family prior to their accident.

2) You can get into assistive technology at lots of different levels. In the UK, assistive technology is generally done by people who are qualified in speech and language therapy, occupational therapy or clinical science, but there are supporting roles in all those professionsa, Occupational Therapy Technician for example, but also other roles.

3) A bit of a cop out, but the two things are not mutually exclusive and both are required. Compassion to help people adjust, technology to help people compensate, neither one more important than the other.

4) Lots of instances. Unfortunately, families often have unrealistic expectations of how their loved one may recover. We have to try to educate and support while not destroying hope. a common example is that families resist electronic communication aid because they say the patient needs to focus on working on their real voice in speech therapy. Their real voice may return, but often not, and even if it does a communication aid can support them as they recover.

5) Technology fails all the time. My approach is always to tell people at the start that technology will occasionally fail. Then when it happens they are not shocked or distressed. If we did tell people that technology will be perfect, then we are setting ourselves up for a fall and, as you suggest, patients and families will lose faith in us.

Seanus4u2 karma

do you work with ahead.org?

RHN_Gary2 karma

No we don't, as we are UK based, but we do have links with organisations for access to higher education in the UK.

Seanus4u1 karma

ahead is international. The last conference I attended was Austria in 2006.

RHN_Gary1 karma

I'll definitely look into them more then. Thanks for the info.

jerrylovesbacon2 karma

How does your work relate to people with intellectual disabilites and/or autism who are nonverbal or have minimal words?

RHN_Gary3 karma

Assistive technology is very important to people with intellectual disability and/or autism. It is not something my team particularly get involved in but in the UK certainly, the assistive technology community is small and most people know each other, so I am aware of lots of people using technology with this group of people.

polarbearjockey2 karma

What are the best and worst parts of your job? Also what places around the world do you travel to?

RHN_Gary2 karma

Best part, cliche again but true, seeing people doing things they couldn't do before. Worst part - trying to find the money to pay for the equipment. Luckily our fantastic fundraising team are on hand to help out with that bit.

As for travelling around the world, we don't see patients internationally, although always open to new proposals !! I've been lucky enough to speak at conferences in Dublin, Barcelona and Sardinia, but thats about it.

Pc7202 karma

What type of patients do you work with? How do these patients become locked in?

karatop2 karma

The type of stroke my cousin had can lead to people being locked in. It's a stroke in the Pons, which is in the brain stem. :(.

http://en.wikipedia.org/wiki/Locked_in_syndrome Edit: added link

RHN_Gary2 karma

Karatop is right, Locked-in syndrome is usually caused by a stroke in the brainstem. They can happen at any age. We also work with people with brain injuries from trauma, such as road accidents and also with people with degenerative diseases such as Motor Neurone Disease (Lou Gehrigs Disease in the US), Multiple Sclerosis, Huntingtons disease and a variety of other rarer conditions.

Apquindo1 karma

What do you think of Peter Ford's Neuro Switch?

RHN_Gary1 karma

I'm afraid I don't know of this switch. We do our best to keep up with all developments worldwide, but this one has escaped me so far ! My team-mates may be aware of it.

mista2kool1 karma

Is your work accessible to anyone who really needs/wants it?

RHN_Gary2 karma

Hopefully ! I don't know where you are based, healthcare funding in the UK is complicated, but most of the patients we see are funded by the National Health Service (NHS), so in theory anyone in the UK could come here. In practice, the NHS may decide to send people to a different hospital and this may or may not be the right decision for the person.

We are however a national charity and part of our mission statement is to disseminate good practice as widely as possible so we try to speak at conferences and other events to raise awareness and we have close links with lots of other people doing similar work in the UK.

Most of the equipment we use during rehabilitation is not paid for by the NHS, it is bought by charitable fundraising.

BadJokeHD1 karma

How common are mental diseases like depresssion in your patients?

RHN_Gary2 karma

Depression is very common in our patients. In many cases however it is probably a rational and understandable reaction to an exceptional and life shattering event. Our doctors will treat the depression and hopefully this will allow people to engage in rehabilitation to the point where they can adjust to their new circumstances and no longer be depressed.

hello_you1 karma

Have you worked with anyone famous? Care to name-drop?

RHN_Gary3 karma

No name dropping I'm afraid! We have had a few well known people over the years but I'm bound by confidentiality. Not many to be honest. We are a national charity and work a great deal with the UK's National Health Service. I think famous people tend to prefer to go private, but frankly, I think they'd do better with us !

amant_sauvage1 karma

After Neural-Implants such as "Deep Brain Stimulation" are put in place within Parkinson's disease patients, exactly how long and tedious is the recovery/training period, and do you normally see rapid progress? I imagine it varies of course with each individual.

RHN_Gary2 karma

I'm afraid thats not really my area and not something we do at my hospital. It is a fascinating area though.

nickjz1 karma

What is the worst illness you see? (The worst for someone to have).

RHN_Gary3 karma

Thats a really difficult question and I'm afraid I'll cop out a bit and not give a definitive answer. Brain injuries and strokes can be devestating and the onset is so sudden that you don't have time to prepare. However, there is often some recovery or maybe a great deal of recovery, and there is hope.

Huntington's disease is a particularly cruel condition. Because of its genetic nature, everyone who has it will have seen one parent have the same disease. There are as yet no cures. However, the progression is relatively slow, so people have time to prepare, but many people may find this slow progression very difficult to deal with.

So which is worst, something that happens suddenly and devastatingly, but there is a hope of at least some recovery, or something that happens more slowly yet more inexorably? I'm afraid I really don't know.

Broken_Kerning1 karma

My dad has ALS and will become more and more paralyzed until he dies.

Would you recommend he get familiarized with accessibility software while he still has functionality to make the transition easier?

RHN_Gary2 karma

Yes, definitely.

Its hard to say exactly what to do without details (which you shouldn't disclose here probably) but it would be no harm if possible getting an iPad if he doesn't have one already and getting some of the communication apps. many are freely available and others are relatively cheap.

Some people with ALS will lost speech before control of their arms and for others it might be the other way round, so in some circumstances the iPad may not end up being useful for communication, but if you can get hold of one there is a good chance it would help.

Eye-gaze systems are very useful to many people with ALS, but they are very expensive and it is probably not feasible to get one well before it is needed, depending on your circumstances.

It is well worth getting familiar with some technology, and it is always going to be a bit of a gamble, but an ipad is a good bet at a not too exhorbitant cost. Your dad's own healthcare provider will probably be able to make a better prediction of how his own pattern of ALS is likely to affect him.

A good app to try out for communication would be GridPlayer, but many more exist. GridPlayer is free, but to make changes to the demo communication grids you would need to buy software for a PC computer, but the free demo grids are useful in themselves and would certainly give your dad an idea of the possibilities and options.

Again though, many other apps exist, many of which are excellent.

okamuraha-7 karma

[deleted]

RHN_Gary4 karma

If I knew who snooki was, I'm sure I'd be able to answer. I'll guess...yes, he/she/it is really that short !