• Friday July 10,2020

Locked-in syndrome

To be a prisoner of his own body - a terrible idea that becomes an oppressive truth in Locked-In-Syndrom (German: prison syndrome or confinement syndrome). The best-known, media-present example of today is probably Stephen Hawking.

What is locked-in syndrome?

Other common causes include meningitis (meningitis), special nerve diseases (eg amyotrophic lateral sclerosis), strokes, as well as severe trauma and accidents.
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Locked-in syndrome is a complete paralysis of the four limbs and the body, as well as the speech apparatus, which leads to an almost complete loss of the communication ability of humans with its environment.

Those affected can usually only communicate via eye movements (winking, blinking, etc.), however, even in this way only very limited utterances through yes / no questions (or and / or questions) are possible.

If this possibility of understanding is also eliminated, technical assistance will be enough to maintain active contact with the outside world.

However, it should be noted in passing that this disease is by no means an awakomatous condition, as the patient has his or her entire consciousness, ie, hearing, seeing, and understanding their environment.


The most common cause of this paralysis is brain stem infarction. The blood supply to the midbrain, cerebral and extended spinal cord is so severely limited or partially completely interrupted that it comes to significant restrictions in various body functions.

Other common causes include meningitis (meningitis), special nerve diseases (eg amyotrophic lateral sclerosis), strokes, as well as severe trauma and accidents. Seltner has observed locked-in syndrome in patients with multiple sclerosis, arterial / neuritis, or toxic substance / drug abuse (heroin).

Symptoms, complaints & signs

The Locked-In syndrome is associated with an intact state of consciousness with almost complete inability to act. Affected persons perceive stimuli. So you can hear, smell, taste, see and feel (restricted). The understanding of speech is usually not limited.

The paralysis that occurs in a locked-in syndrome includes the four extremities and horizontal eye movements. In most cases, the ability to speak, swallow and mimic is lost. Thus, only vertical eye movements remain for communication. If these fail, at least the mechanisms for dilating the pupils are still intact. Overall, the physical situation from the neck down to compare with the situation completely paraplegic.

The persons affected are not limited by their alertness. In the broadest sense, they experience an ordinary biorhythm. There is hardly any perceived pain or an uncomfortable body sensation. The awareness of your own paralysis is present. The cognitive options are usually limited only insofar as the trigger of locked-in syndrome can lead to cognitive impairment.

Due to the fact that the patients are usually fully conscious, the Locked-In-Syndrome must be differentiated from the coma. In this case, it must be questioned whether and to what extent the persons concerned perceive their environment.

Diagnosis & History

The diagnosis of a LiS can not be made by pure "taking in", since the clinical picture externally much resembles the Wachkoma or akinetic mutism (a disease which is characterized mainly by a severe drive disorder).

Suitable diagnostic methods are mainly electrical and magnetic measurements of brain and muscle activities. CT and MRI can be used to detect changes in the circulation and metabolism of the brain. In most cases, these technical diagnostic methods are combined with laboratory techniques in order, for example, to better assess an inflammatory condition in meningitis.

The course of this disease is very individual and depends on both its medical care, as well as the cause of the outbreak. So it can be assumed that a mortality of 59-70% is present when the LiS was triggered by a bleeding or obstruction in cerebral vessels. For traumas, tumors, etc. this rate drops to about 30%. Diseases caused by toxins (poisons / drugs) are as good as never to death.


As a rule, those affected suffer from the Locked-In-Syndrome in significant mental symptoms and complications. However, they can not comment on the outside world and can not communicate with it. This leads to significant and significant restrictions in the everyday life of the person concerned. The patients themselves usually suffer from paralysis in Locked-In-Syndrome and are thus dependent on the help of other people in their everyday lives.

This often leads to restrictions in movement, so that the patients are dependent on a wheelchair. Due to the language disorders usually communication with the outside world is not necessary. Those affected are in a coma and suffer from severe depression and other mental disorders.

The life expectancy of the patient is not limited by the Locked-In-Syndrome in most cases. However, the further course depends strongly on the cause of the Locked-In syndrome, so that a general course of the disease can not be predicted. A causal treatment of Locked-In-Syndrome is usually not possible.

The affected people are dependent on various therapies and aids in everyday life. As a rule, the syndrome can not be cured completely. Above all, the relatives of the patient suffer from the syndrome of significant depression and other mental limitations.

When should you go to the doctor?

The locked-in syndrome prevents by definition that the person concerned goes to the doctor himself. However, the worrying symptomatology in any case means that the patient gets into a hospital. Because stroke is the most common cause of lock-in syndrome, it usually results in post-incident surveillance.

In general, those affected by Locked-In syndrome do not have the opportunity to forego medical attention. This is because the condition must urgently be differentiated from other states of immobility and appropriate care and attention must be given. Since the person concerned can not communicate effectively and the symptoms of the disease can be so easily confused, it is sometimes up to the relatives to point out the possibility of a Locked-In-Syndrome.

As the disease requires a great deal of medical attention, neurologists who check the functionality of the body are particularly important in the process. For the course of a possible recovery, it is important that the physiotherapeutic, speech therapy, occupational therapy and possibly psychotherapeutic treatment by specialists is optimally covered.

Treatment & Therapy

First and foremost, treatment of those affected requires: An intensive and individual combination of occupational therapy, speech therapy and physiotherapy. The main goal is to mobilize the patient and thus remove him from his mobility. The sooner such a rehabilitation is scheduled, the more likely are successes.

In physiotherapy, the principle of "systematic repetitive basic training" is used today. This involves initially only single, small movements on joints to be trained. If these are self-contained and certain positions are preserved, the training exercises are extended to multiple joints and muscle groups and later exercised in precise activities (eg hold fork and lead to the mouth).

Further assistance in relearning various abilities is offered by occupational therapy, whose goals are primarily to rebuild fine and gross motor skills. Other tasks include the improvement of communication (via body language), the development of socio-emotional skills (showing emotional states) as well as the assistance in case of possible changes in the home environment and the acquisition of appropriate tools.

The use of speech therapists as the third pillar of therapy is mainly used for swallowing training, to enable independent food intake again. Frequent, targeted exercises also aim to restore speech enhancement to more active communication with the patient environment.

Outlook & Forecast

The prognosis of locked-in syndrome is usually unfavorable. In most cases, the symptoms last for life or show only slight improvements over the lifespan. Getting a full recovery is rarely given. Nevertheless, the course of the disease depends on the cause of the disorders. If there is a way to fix the causal triggers, a cure can be made.

Various therapies are used to support quality of life and promote well-being. These are individually adapted to the possibilities of the organism and often vary over time. Locked-in syndrome is a long-term treatment of the patient. Without the use of medical care, the status quo remains at best. In an unfavorable case, the affected person dies prematurely.

Many sufferers report an improvement in their quality of life, even if they carry out independent exercises and self-initiated exercises and training outside of the offered therapy options. However, most patients rely on the help of others for life. They are usually unable to cope with their everyday lives without full-time care. Due to the physical impairments, mental sequelae can occur. The illness represents a strong emotional burden for the affected person as well as for the relatives.


There are no special measures to avoid illness. A healthy lifestyle without body toxins such as alcohol, nicotine (and the accompanying substances contained in cigarettes) as well as drugs of any kind can causes such as strokes u.ä. minimize, but this is not guaranteed.

You can do that yourself

The measures that Locked-In-Syndrome sufferers can take to improve their situation are limited by their symptoms. Until the suggestion of a suitable therapy, which allows at least partial movements and partial movements, affected persons are therefore - with the exception of the possibility of communication - completely dependent on their environment.

With the onset of therapy, it is also the affected person, exercises that can be carried out alone or in a private environment, consistently incorporate in his daily schedule. This is especially true if the inpatient stay is terminated, as this usually means a decrease in therapy hours.

For the person's environment, the situation means that they also have to learn certain forms of communication. Due to the limitations, it will be necessary to adapt the communication in order to stay in contact with the person concerned. At the same time, it should not be too simplistic - for a toddler, for example - to be spoken, since Locked-In-Syndrome patients seem objectively helpless, but their perception is usually not limited. It is also up to relatives to support the care of the person concerned. This includes visits, specially made handles (if approved) and, of course, checking for possible bedsores or poor postures.

Further measures that can be taken by the person affected and their environment are highly dependent on a possible therapeutic success and the late effects of locked-in syndrome. They belong accordingly elaborated together with doctors and therapists.

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