Living with Locked-in syndrome (LIS)



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English translation with the kind support of Techniker Krankenkasse Techniker Krankenkasse


Podium Discussion Care Giving relatives

Against the Slowness - Living with the Locked-in syndrome - Portrait of Marianna Battaglia

The Sunshine Being
Marianna Battagli, is 36 years old. She suffered a Locked-In syndrome when she was just 18 years old and as a consequence of a Basilar Thrombosis. Her rehabilitation took place in clinics Germany and Italy. She studied psychology at the university of Florence and Bonn, and graduated with a bachelor's degree. She is a state exiled psychologist. Marianna is a wheelchair user. She finds it possible to walk a few steps with assistance but she is not able to stand unaided. She has no restrictions dietary restrictions or problems with her food intake. Communicating verbally is possible with careful listening on behalf of who she is talking with. Marianna lives at her own department and gets a 24 hour assistance of the regional association Rheinlandpfalz (LRV). This continued support also makes it possible for her have a work life.

Against the Slowness - Living with the Locked-in syndrome - Portrait of Anama Fronhoff

Anama Fronhoff (49) suffered a stroke with Locked-in syndrome at the age of 33. Up until this point she had been working full time as a nurse.  As a result of her LiS she now lives with limited movement of her head and she is completely paralyzed. For her verbal communication and oral feeding are possible. She lives with her cats and with 24 hour assistance, independently  in her own apartment.

Against the Slowness - Living with the Locked-in syndrome - Portrait of Michael Sagel

The Artist
Michael Sagel (57) has lived with Locked-In syndrome for 20 years. LIS happened to him on the day of his wedding to his partner, Silke Reinker. Today he lives with her in Cologne. After the infarction he began a master’s degree in Spanish, Portuguese and Catalan at the University of Cologne. Today he works as full-time visual artist. To aid his mobility he uses a folding wheelchair., while walking and climbing stairs is possible with the help of assistants. The biggest limitation Michael in his day to day life is that a severe ataxia, does not allow fine motor skills. Verbal conversation with Michael is possible, however, careful listening is necessary to aid good communication. His/food intake functions for him with out any restrictions.


Angela Janssen - Erwin and his friends

Angela Jansen was affected by ALS in1994. This hasn't prevented her from realizing any of her  dreams and goals. With her tracheostomy tube, she was locked-in from1998 and as a result could only communicate using artificial digital aids. Once again, that didn't stop her from realizing the goals she set herself. These day to day goals naturally include the help and support of  Erwin, her dog and companion.

The Association - LIS e.V. - Help for people with Locked-in syndrome

The LIS association was founded in the year 2000 by eight original members. Today there are almost 200 people who are members of the association. Their families, relatives and friends are also mmbers and can seek and receive free advice through this association. There is a very specific library on the LIS condition that has been compiled to help with members' questions. The association is open to all of those who are affected by Locked-in syndrome.