Locked-in syndrome

Cerebromedullospinal disconnection, pseudocoma, LIS, locked in state, paralysis

What is Locked-in syndrome?

A person with Locked-in syndrome is completely paralysed and unable to speak, but still aware of their surroundings mentally.

They are usually able to move their eyes and sometimes can communicate through blinking.

There is currently no treatment or cure for Locked-in syndrome, and it is extremely rare for patients to recover all significant motor functions.

What causes Locked-in syndrome?

Locked-in syndrome is most often caused by damage to a specific part of the brain stem known as the pons. Some of the causes of Locked-in syndrome include:

  • Brain stem haemorrhage
  • Brain tumours
  • Brain infections
  • Trauma, such as a brain injury
  • Medication overdose
  • Seizures

Symptoms of Locked-in syndrome

Usually, someone with Locked-in syndrome cannot consciously chew, swallow, breathe or speak.

Supportive care and devices which allow communication by eye movements can help the patient and improve their quality of life.

Is someone you know experiencing Locked-in syndrome?

If someone you know is experiencing Locked-in syndrome, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with locked-in syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with locked-in syndrome from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with Locked-in syndrome

We support carers, friends and family too

Are you a carer for or relative of someone with locked-in syndrome? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including locked-in syndrome, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at the Brain Charity has a range of resources on Locked-in-syndrome and related disabilities.

Support groups

Headway, the Brain Injury Association

Other charities

Stroke Association

Website: www.stroke.org.uk

Helpline: 0303 3033 100

Email: helpline@stroke.org.uk

Headway, the Brain Injury Association

Website: www.headway.org.uk

Helpline: 0808 800 2244

Email: helpline@headway.org.uk

Locked In Trust

Website: www.lockedintrust.org

Helpline: 01548 853 988

Email: Fill out the form on this page.