Care in general

Since the patient with Locked-In-Syndrome is in a very unstable condition, even small infections can easily lead to life-threatening situations. This might be a well-known and well-controlled problem when staying in the intensive care unit of the hospital. But in a care station the same intensity of personal attendance might not be guaranteed.
Therefore it is very important at the beginning not to build an environment free of infection causing factors.

Hilfe beim Essen = Training A mobilised care giving is certainly a precondition when trying to start moving again. That is why family members should ask for intensive mobilisation training for the afflicted patients, especially in the early phase and possibly even already in the intensive care unit. Unfortunately, doctors and nurses believe that needs rest and such an early therapy would expect too much from the patient. That is why family members are required to prevail possibly against those opinions, even if it seems tough in that moment.

The giving of narcotics is particularly problematic, because they demobilise the patients. We want to encourage the family members to get in contact with other afflicted ones to vanquish the inhibition threshold towards specialists and institutions and to act in the interests of the patients as well as to receive support for themselves.
Self-helf group
Another topic is nutrition. If possible, a vitamin rich and commensurate nutrition is very important and should be watched.

Care in particular

The Locked-In-Syndrome represents a substantial handicap by which all organs are affected. That means that every patient needs to be provided in a certain measure with sufficient specialized knowledge.
Following, there are given different prophylaxes (measures to prevent deterioration):
  • Contracture prophylaxis (danger of restriction of movement through shortening of the tendons i.e.)
  • Decubitus prophylaxis (danger of bedsores)
  • Pneumonia prophylaxis
  • Thrombosis prophylaxis (danger of blood clot)
  • Infection prophylaxis (danger of inflammation of different organs)

One should always keep in mind that a Locked-In-patient has a weaker immune defence because of his lack of mobility and that he is more likely to contract side sicknesses, which will probably be graver than they would be for a healthy person. That is why Locked-in-patients should try to avoid exposing themselves to additional danger. Every little clue to side sickness should be checked, which presumes a good supervision of the Locked-In-patient. Therefore it should be well-considered to resign specialized personnel.

The care of a Locked-In-Syndrome patient is not a simple Sunday walk; one should be conscious of the dangers that might appear.