Self-help group

  1. The self-help group
  2. Reports from afflicted patients

In Berlin there is a self-help group for Locked-In-Syndrome afflicted patients.

The group has a couple of tasks and functions:
  • Exchange of experiences and advices
  • Information about improvements in therapy and rehabilitation
  • Nice get-together in the office of the association

The group consists of 20 to 30 people at the moment and is the backbone of the work of the association in Berlin.
There is a meeting at least once a month.

All Locked-In-Syndrome afflicted patients of the state Berlin meet in the self-help group. Furthermore, the group takes over the provisional attendance of the afflicted patients in Brandenburg at the moment, until an own self-help group is formed there.

The LIS Organization as a mother association is been seeking for a internship position, which is supposed to intensify the work on site for and especially with the members, who are restricted in their mobility, partially very seriously.
Since the past year the LIS Organization is supported by a student assistant.

The meetings are to be extended inasmuch as we try to expand the interests of the afflicted regarding the free time activities, that means we also want to do something together out of the premises of the LIS Organization.

Furthermore, the self-help group organizes lectures, i.e. about the topic of 'supported communication', presentations of communication aids and possibilities concerning alternative medicine.

An important point for the organization is to take a stand on current political topics like euthanasia and to represent this opinion in public. LIS Organization takes the view that the people with severe chronic illnesses and handicaps should talk about all interests of the health service and the public life on their own and attend their interests and rights. The social life should not be minimised, which means that all members of the self-help group visit concerts and events together.

Reports from afflicted patients



  1. Interview with Dr Karl-Heinz Pantke, the president of the LIS Organization


  2. Life with Locked-In-Syndrome


  3. Interview with Mr and Mrs Müller


  4. My way to the worst case scenario