Coronavirus: How to get Help

Find coronavirus help in your local area from the UK Government.

The Brain Charity can also help anyone with a neurological condition, their family and carers at this time.

If you need help, please get in touch: Email The Brain Charity or call us free on 0800 008 6417 (Monday-Friday: 9am-4.30pm)

Iron Statue

Being able to communicate is a basic need of every human being. Imagine being completely awake, conscious and aware on the inside, being able to hear and even see everything around you, yet being unable to speak or make a sound - even though your vocal chords are fine. To be unable to move; to be unable to express yourself in any way. To not be able to make yourself heard or let people know that you can hear them and are aware of everything around you.

This is the situation faced by those with Locked In Syndrome (LIS), which most people tend to only be vaguely aware of as a result of the book and film: ‘The Diving Bell and the Butterfly’. LIS is a rare neurological condition which involves the almost complete loss of all voluntary muscle movement other than blinking and restricted eye movement.

LIS is also known as cerebromedullospinal disconnection and often leads to paralysis of all four limbs as well as loss of speech. Because of this, it can sometimes be difficult to diagnose as the person can be falsely determined to be in a coma. The most common cause of LIS is as a result of a severe stroke or brain trauma.

It’s essential that LIS patients try to develop their ability to communicate. A technological advancement known as an E-Tran board can be used with some people with LIS. It shows letters of the alphabet and various words such as 'yes' and 'no'. The user's eye movements can be interpreted by carers and also by eye-gaze computers, which can detect and decipher the tiniest of movements. If this proves not to work, carers have been able to read letters of the alphabet and decipher blinks that represent yes and no. This can obviously be a very slow and frustrating process though. Doctor Mark Delargy, from Dublin’s National Rehabilitation Hospital, referred to the situation as being akin to communicating via “a mobile phone with a dying battery” as there are many further complications, such as patients getting sore eyes and frustration at blinks initially being misunderstood.

In January of this year, there has hopefully been a major breakthrough. A brain reading device has been used to have a basic dialogue with LIS patients. This could however mean that, perhaps soon, a more detailed communication can be held. This would be truly life changing, not just for the person desperately trying to communicate, but for their families as well. It may not be an end, but it’s definitely a beginning.