There is no specialized therapy for Locked-In-Syndrome, however practicing an intensive combination of physiotherapy, speech and occupational therapy has been approved.
Generally it is proven that all therapies that attach great importance to concentration on the cognitive (consciousness-moderation) connection between perception and movement are suitable treatments.
The earliest possible beginning of an intensive treatment in regards to therapy and mobilisation is extremely important.
Experience has shown that the success of the rehabilitation depends directly on the time of the beginning respectively the beginning is strongly connected with it, meaning, the earlier patients begin with therapy measures, the more comprehensively and lastingly the success will be.
But one needs to be aware that the intensity and duration of the treatment will quickly decrease as soon as the patient leaves the stationary phase.
That is why we can only advice our patients to stay as long as possible under stationary treatment and we cannot endorse an early release.
The LIS association supports afflicted people with the enforcement of this knowledge towards sponsors through its consultation and publication of scientific results.
Therapy as much and as fast as possible!
Therapie so viel und so schnell wie möglich!
The therapy is divides in 3 parts:
Paralyzed - what now?
Physiotherapy is the most important measure to fight against a high-grade paralyzation. Though there are different ways of procedure. Today it is demanded that the therapy needs to be evidence-based, meaning, the need to be based on the newest practical and theoretical knowledge. There are still not a lot of therapy studies yet that have examined the success of the different practices. However, it turned out that they are effective in different ways and they might develop their optimal effect only in certain stages of the illness. In the following it is particularly dealt with the first phase of a severe paralyzation.
In order to live independently we need our muscles that allow us all different kinds of movement. At the same time they perform retaining work so that we can maintain our position against the force of gravity or against resistors. Therefore our brain plans in each case the necessary work orders, which are conveyed over the nerve tract to the muscles.
Those nerve connections are developed after a firm, genetically steered plan at the beginning of our life. First, the networking are developed, which allow us to move. With them our muscles, for example the bending muscles, receive the order to contract. At the same time the opponents to these muscles, the stretching muscles, receive the order to ease off. That combination causes a bending movement. Only when it is assured that all muscles not only receive work orders but also sufficient orders to release, those certain nerve tracks will be developed, which convey the retaining activity, because then the muscle straining can be released again.
For a long time people thought that after this maturation process the nerve system was created finally and 'solidly wired'. Accordingly one could not expect that a paralyzation regresses after a corrosion of the nerve tracks, like it happens for example to Locked-In-Syndrome patients. (Excluded the cases in which the nerves are not corroded, but only damaged. Such cells can heal again in the first month, so that a 'spontaneous recovery' can occur.)
Research done in the last years showed, however, that the brain of an adult is able to recover. Even new nerve cells are formed and inserted (1, 2). But not only can the healthy brain change. It is now known that also a damaged brain has a potential to repair itself, which was unexpected until recently. Research results point out the fact that the reconstruction of nerve tracks does not follow any plan, but the connections are developed individually. Afflicted patients try to use the connections continually, for which a 'need' is reported (3)
Thus the behaviour of the patient bears a crucial role of repair. It could also be jointly responsible for faulty corrections. There are clues that the development of spasticity, which arises with Locked-In-Syndrome, can be intensified through the behaviour of the patient (4). Namely, when a patient plans more retaining tension then movement activity, like we all do every day. The nerve connections, which transfer these commands, would be faster developed then the ones for movement instruction, until finally the muscles can produce tension again. Since however there are still no transmission paths available for the command of relaxation, this kind of muscle activity can not be limited again. Therefore not a normal, but a changed damage-oriented behaviour would be important after the brain is damaged (5), so that - like at the beginning of life - the nerve tracks are developed for movement activity.
On the basis of these realizations a new therapy technique, the 'systematic repetitive basis-training', has been developed in recent years (6), which guides the patient to a damage-oriented behaviour and thereby supports. Simply said: Initially only the single movements are performed in each joint. Not until they are again possible, meaning when muscles can be shortened but also extended again, the retaining activity will be exercised. Afterwards the single movements and the retaining activity can be combined to different actions.
This procedure was examined in a study of stroke patients and the effectiveness for half-side paralyzation could be confirmed (7). An individual case study with a patient with Locked-In-Syndrome showed that the SRBT can also be suitable for this type of illness (8). I cases of paralyzation, where no spontaneous healing appears in the first months, it takes approximately 6 months until light movements are noticeable and approximately 18 to 24 months until daily activities are possible. One condition is that the patient tries the movements performed in the therapy and that the therapist supports him very precisely but only as far as necessary. In the first phase any exhaustion is forbidden, because it almost always leads to cramping. Daily practising - whereby a break on the weekend is possible - seems to be also a condition.
Evidence-based physical therapy also offers new hope to paralyzed Locked-In patients.
- 1. Kintner, C. Neurogenesis in embryos and in adult neural stem cells. The Journal of Neuroscience 22 (2002) 639 - 643
- 2. Nottebohm, F.: Why are some neurons replaced in adult brain? The Journal of Neuroscience 22 (2002) 624 - 628
- 3. Nudo, R.J. / Milliken, G.W.: Reorganization of movement representations in primary motor cortex following focal ischemic infarcts in adult squirrel monkeys. Journal of Neurophysiology 75 (1996) 2144 - 2149
- 4. Eickhof, C.: Kann Wahrnehmung die Lähmungen beim Patienten mit dem Locked-in Syndrom konsolidieren? (Can perception consolidate the paralyzation of patients with Locked-In-Syndrome?) In: Pantke, K.H., Kühn, C., Mrosack, G., Scharbert, G. (Hrsg): Bewegungen und Wahrnehmen. (Moving and perceiving) Schulz-Kirchner Verlag 2004, 43 - 47
- 5. Platz, T.: Impairment-oriented Training (IOT) - scientific concept and evidence-based treatment strategies. Restorative Neurology and Neuroscience 22 (2004) 301 - 315
- 6. Eickhof, C.: Grundlagen der Therapie bei erworbenen Lähmungen. Pflaum Verlag, München 2001 (Basis of therapy for achieved paralyzation)
- 7. Platz T. / Eickhof C./ van Kaick S./ Engel U./ Pinkowski C:/ Kalok S. / Pause M.: Impairment-oriented training or Bobath therapy for arm paresis after stroke: a single blind, multi-centre randomized controlled trial. Clinical Rehabilitation; printed.
- 8. Eickhof, C.: Physiotherapie beim Locked-in Syndrom. L.o.g.o.s. interdisziplinär. (Physical therapy for Locked-In-Syndrome. Interdisciplinary L.o.g.o.s). (2001) 22 - 25
Definition of Occupational Therapy:
Occupational therapy accompanies, supports and enables humans, who are threatened with the limitation or restriction of everyday activities. Here it concerns, people within their environment being able to accomplish significant manipulation in the areas of self-sufficiency, production and free-time. Exertion is the therapeutic medium and also the goal of intervention accordingly.
Locked-In-Syndrome is an illness of the central nervous system.
Therefore the speech therapy care contains:
- Inhibition and dismantling of pathological attitude and movement samples and courses of normal movement
- Coordination, conversation and integration of sensory preceptors
- Improvement of the central causes of disturbances from rough- and fine motor functions to the stabilization of sensory motor function and perception functions including improvement of the equilibrist function
- Improvement of neuropsychological deficits and restrictions of the cognitive abilities such as: attention, concentration, retentiveness, memory, reading comprehension, action planning, recognition of subject-matter and the recognition of space, time and people
- Learning of substitute functions
- Development and improvement of social emotional abilities, among other things within the area of emotion control, the effect or the communication
- Training of everyday activities in regard to the personal, domestic and vocational independence
- Consultation concerning suitable aid and changes in the surrounding domestic field, if necessary creation and adjustment of aid is needed
- Sharing of the patients at work, in their spare time, their environment and their public life in order to achieve the goals described above, the speech therapist should return to different treatment beginnings, as e.g. after Perfetti, Bobath, Affolter, Johnston, Catillo Morales, Feldenkrais or others
Um die oben beschriebenen Ziele zu erreichen, greift der/die Ergotherapeut/in auf verschiedene Behandlungsansätze zurück, wie z.B. nach Perfetti, Bobath, Affolter, Johnston, Catillo Morales, Feldenkrais oder anderen.
Marita Storim (Occupational therapist)
One needs to find an individual communication possibility and training together with the speech therapist.
1. Gulp training
2. Speak and voice therapy
2. Locked-In patients suffer from a malfunction of speaking and voice, which is called dysarthria. Breathing, speaking and the movement of articulation organs can be impaired in the severe phase on account of the paralyzation, so that the patient cannot make himself verbally understood. The patient's speech system remains normally, so that contact can still be made through other ways of communication (e.g. concerted signals like one shut of the lids for 'yes', two for 'no', or letter tables). Purchasing and learning more complex appliances for a supported communication (e.g. LightWriter, Aladin, Tellus with MindExpress) might be a useful attachment, because regaining the verbal language requires a lot of time and effort.
The disordered areas are initiated and trained in the speech therapeutic treatment. Exercises that intensify the breath-in and lengthen the breath-out are very useful for example for breath training. Volume and modulation ability can be trained to support the voice. For some patients it is important e.g. to exercise the breech sounds and the soft palate function for a better understanding.
Frequent and aimed exercises are precondition for re-receiving the speaking ability. You can find addresses of therapists that give these treatments through the DBL or the association of breathing, speaking and voice teachers.
Frequency of the treatment::
Five times a week in the intensive phase; reducible to two to three times per week during the course.
Receivable at any family doctor, neurologist or internist.