Locked-in Syndrome: Understanding your diagnosis and finding your next steps

Despite Locked-in Syndrome being a rare disease, it is essential for those diagnosed with LiS to understand their condition and know what their next steps are.

LiS, or Locked-in Syndrome, means the patient has a condition where they are aware of themselves but are unable to physically move or communicate verbally.

However, patients can move their eyes up and down and can also blink.

What are the symptoms/types of Lis?

LiS presents itself with a few key symptoms, which are important to know and recognise if a loved one develops 1 or more of them.


  • Unable to show facial expressions
  • Cannot speak or move
  • Cannot consciously or voluntarily chew/swallow
  • Inhibition to create any body movements below their eyes

Different types of Locked-in syndrome

There are 3 types of Locked-in syndrome:

  1. The classical form – patients with this type have 0 voluntary movements but they can move their eyes up and down; their hearing also remains unaffected.
  2. The incomplete form – there are little differences between the incomplete and the classical form however, with this form, you can have some type of sensation and movement functions in limited bodily areas.
  3. The total immobility form – with this type of Locked-in, patients have total body paralysis and further loss of eye mobility, but their cognitive abilities remain normal. Healthcare professionals can diagnose if a person still as their cognitive abilities by performing an ECG, which measures brain waves.

Treatment and care

Supportive treatment is essential to care for those with LIS.

Often, patients will have a small hole in their throat to accommodate artificial breathing devices, like a tube. Patients with LiS will also require a tube to be placed into their stomach so that they can receive food and water, just like us.

There are other ways to provide supportive therapies too. As carers, we can:

  • Preventing pressure injuries e.g. bedsores
  • Providing physical therapy to prevent limb stiffness
  • Preventing immobilisation complications, such as UTIs.

How can Synergy help?

Here at Synergy Complex Care, we have ensured that we have built all complex care around specific symptoms/requests/needs of each client to boost a positive way of living for them.

We endeavour to use the most reliable aids and practices to provide our clients with the control to consent, express their requests and talk with our trained care team, leaving you satisfied that your loved ones are receiving the best possible care.

If you would like to find out more about how Synergy Complex Care can help, please get in touch via this link and one of our friendly team members will be in touch.

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