The L.I.S. e.V. association

A benefit association to establish a foundation
for an improvement of life circumstances of people with Locked-In-Syndrome -
LIS e.V.

The whole body is paralyzed. Speaking and swallowing are not possible.
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.
Focus of our work is i.e. to build-up a patient database.
Behind it lies an important project:

No stroke equals the other.
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.

Activity report of 2004

In the year 2004 two main focuses shaped the work of the association in particular.
That was on one hand the final financing, preparation and performing
the project 'mobilisation assistance' in the Vivantes hospital in Berlin-Spandau,
on the other hand the extension of the information library,
as well as the initiation of a project to connect people with Locked-In-Syndrome
and comparable neurological sicknesses Europe-wide.

Pilot project Mobilisation assistance for people with severe neurological sicknesses in Berlin

Mobilisation assistance
In order to access results of this project also to a specialist interested public,
a convention in the hospital Königin Elisabeth Herzberge (KEH) took place in December 2004.
The lectures held are released in 2005 in a convention magazine, like the times before.

Project "European cross-linking of humans with Locked-In-Syndrome and related neurological illnesses"

Basis of the work of the LIS association is working with the LIS afflicted and a technical information infrastructure, which the association has been intensely developing for some time. The work itself (consultation, information, clarification) is almost entirely through some form of media (telephone, fax, books, films, computer, etc…) performed, because most members and other partners,
meaning people with an acute Locked-In-Syndrome situation,
are so severely handicapped, that another for of communication is often not possible.
Therefore, the association sees itself as an intermediating and suggesting entity in self-help, for its handicapped clients the association distributes and makes available all information.
This information, however, cannot be simply called up from existing institutions; rather it must be developed and packaged through the work of the association,
often only to be formulated. It was shown, that through the self-help work substantial impulses flowed back into the professional medical and therapeutic worlds, the process of information exchange behaves differently here, than one generally accepts.
In the field of Locked-In-Syndrome there are no comparable organizations, also not within medical fields,
that inform about the complete scope of the disease, in all aspects, in such a comprehensive and clarifying manner. We would now like to interlace the work of this project in Europe and improve the lever of co-operation of the self-help.
Synergy with other organizations, which dedicate themselves to neurological illnesses (e.g. Stroke, but also Multiple Sclerosis because of the difficulty of the therapy and rehabilitation),
are deliberate.

The overall project consists of three ranges:

  1. Development of the information centre
  2. Production of different publications to inform and clarify
  3. 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.

The publications of the association about different topics concerning the Locked-In-Syndrome, receive a wide and technical interest inland and abroad by now.
The request of the association to carry out information and to clarify also in the medium brought already a considerable success.
For example the Bavarian broadcast, inspired by the LIS publication "Moving and experiencing" (published in November 2003),
showed an eight part TV report about the topic. The first episode was broadcasted in April 1st, 2004 at 7.30 p.m.

In 2004 the issue and preparation of the following publications were made:

  1. A script to the introduce the computer-assisted communication
  2. Preparation of the publication of the lectures held on the European Meeting to the EJMB in Rheinsberg (Mark) in 2003
  3. Preparation of a documentation of the initialized Enquête in 2003 regarding the euthanasia as well as the problem of patients' living will
  4. Preparation of a publication of an anthology with scientific essays to Locked-In-Syndrome

To group these activities we are preparing the European Meeting of Self-Aid in 2006
At the last European Meeting to EJMB many afflicted expressed their desire of a repetition to intensify the contacts made and to give new impulses toward self-aid on a European level.
The get-together of afflicted and their family members, interested people as well as specialists on medicine, therapy and care in a human and equal scope was sensed as innovative and motivating for a working relationship by everyone.

Weihnachtsfeier Another focus of the work of the association was, like in the last years,
the self-help group
of Locked-In-Syndrome patients in Berlin.
The group meets at least once a month to exchange experiences and advices, to inform about improvements in therapy and rehabilitation as well as to have a nice get-together in the office of the association. The self-help group, which consists of 20 to 30 people at the moment, is the backbone of the work of the association in Berlin.

Goals and perspectives for 2005

  • Development of urgently necessary new funds (by sponsoring, donation campaigns etc.)
  • Realization and protection of already successfully running projects
  • Enlargement of the public relations and consulting on a national and European level
  • Stronger representation of interests of dangerously ill people regarding unjustified and questioned neo-liberal economics
  • Medium- and long-term protection of the association work through permanent employees

We hope that everyone, who supported and appreciated our work so far, will continue doing so in the year 2005.
That is why we urgently ask all LIS sympathetic people,
no matter if person or institution, for money donations, regardless in what height,
so that we can continue our work. Every donation is welcomed and helps! The association is of course recognized as a non-profit institution and is authorized to issue certificates of donation for the tax office. Hundreds of Locked-In-Syndrome patients, who are dependent on your help, will thank you for it.

Donation account: 

Bank: Postbank Berlin

Bank number: (BLZ) 100 100 10

Account number: (Kto) 625 683 109


IBAN DE72 1001 0625 6831 09