The L.I.S. e.V. association
A benefit association to establish a foundation
The whole body is paralyzed. Speaking and swallowing are not possible.
for an improvement of life circumstances of people with Locked-In-Syndrome -
Only the eyelids can move.
The Anglo-Saxon language named this condition Locked-In-Syndrome.
A lot of people with this condition die.
The Locked-In-Syndrome can be the consequence of a stroke,
suffering from ALS, another sickness and it can also happen as the result of an accident.
In former times patients with L.I.S. were treated as bodies without emotions.
A terrible mistake!
In recent years people have come to realize that,
though prolonged treatment, amazing success can be obtained.
Locked-In patients that started with an extraordinary amount of physiotherapy,
ergo therapy and speech therapy from the very beginning on developed positively
according to the amount of therapy they received.
In these cases the daily physical workload lasted 8 to 10 hours.
During and after this time the patients state of health,
even when hardly noticeable, was however constantly improving.
The improvements in the patients' conditions were only measurable after months;
a stay in a rehabilitation centre for 3 to 6 weeks would have barely shown a visible improvement.
As already mentioned above, only few patients receive the benefit of such a detailed and comprehensive treatment.
In our opinion that is the reason, why the condition of many Locked-In patients does not improve at all or only a little.
Unfortunately there is even an information deficit among experts about the process of the illness.
Many family members do not even conceive the idea to take care of their nearest so intensely and over a not determined period of time. They do not realize what possibilities they have to help because they have no hope or simply no time.
We founded the association L.I.S. in the year 2000 to work against this dilemma and to achieve the following goals:
An optimal therapy for the afflicted people
- Clarification for patients and their family members, therapists and doctors through personal dialogues (i.e. phone consultation), lectures in different institutions, organizing conferences and/or further training, creating publications regarding the topic
- building-up a documentation centre: compilation and reproduction of the newest literature from the international neurobiological science and its neighbour sciences, building-up a patient database (long-term project), collecting and evaluating patient data about their healing process for several years
- Supplying communication means
There are self-help groups in Berlin and Cologne.
No stroke equals the other.
Focus of our work is i.e. to build-up a patient database.
Behind it lies an important project:
In order to receive reliable propositions about the stroke and its long-term results,
you have to look for patients with similar characteristics out of a thousand of stroke cases.
In cases of Locked-In-Syndrome, where basilar thrombosis caused the illness,
this selection however,
is dominated by the illness itself:
It is always the same relatively small part in the brain that is affected.
The goals are to improve the life circumstances of patients with Locked-In-Syndrome,
as well as to receive propositions about long-term process of a stroke.
The health condition of the patients is to be observed for several years.
In cooperation with the hospitals in Berlin and Brandenburg the 'project mobilisation assistance' with stroke patients is already accomplished.
The project uses the simple fact, that the brain regains lost movements by frequently mechanically repeating them.
The project started in Mai 2004 and is to be expanded.
The activities of LIS consists of three ranges:
- Development of the information centre
- Production of different publications to inform and clarify
- Preparation of a board meeting consisting of the afflicted and
experts at an European level.
The information centre which is built-up at the moment forms the informal basis of the work of the association.
It consists of a library that is accommodated in barrier-free rooms,
an internet station as well as a computer for supported and extended communication.
The library which is open to all interested ones collects
the most important literature of the Locked-In-Syndrome topic and related
neurological illnesses, as well as literature about therapy and rehabilitation.
In addition there is also a unique collection of technical magazines regarding the topic,
literature written by afflicted patients about their experiences,
video material and a database of essays about the Locked-In-Syndrome.
The library offers a Europe-wide unique collection about the Locked-In-Syndrome topic.
The medium-term goal is to scientifically complete this collection.
In Germany there is no comparable source of information that is freely accessible
for handicapped people.
This standard could so far be achieved only with donations,
but an appropriate continuation of the collections and the equipment
of the library cannot be ensured by the association through own resources.
That is why the association ask for help from the 'Aktion Mensch',
which supported this project financially for one year.
The internet station can be used for research and information
requests by members of the association and by interested visitors;
beyond that it connects the association with its members and with all interested ones in Germany and abroad,
and is available day and night as a virtual contact.
It is still to be intensified by a web-moderated panel, which is built-up at the moment.
There is also a computer available in the information centre
that can be used by afflicted people for support and extension of communication,
because a lot of our members suffer from speaking (not speech!) disturbances.
Since last fall the association organizes courses with relevant communication programs
for afflicted and interested ones in the information centre.
Furthermore lectures about topics regarding the association and
meetings of the Berlin self-help group take place there.
Bank: Postbank Berlin
Bank number: (BLZ) 100 100 10
Account number: (Kto) 625 683 109
IBAN DE72 1001 0625 6831 09