Yaşamak Yetmez, Yaşatmak da Lazım

Background

Amyotrophic Lateral Sclerosis (ALS) is a disease resulting from the degeneration of motor neurons in brain stem and spinal cord. The loss of motor neurons causes weakness and muscle atrophy. Cognitive functions of the patients are not damaged. ALS patients, whose lives radically change after discharged from the intensive care unit, start to live in the care of their relatives who are not informed about the intensive care conditions at home. This is a traumatic and despairing period both for the patients and the families. 

Project Goals

• In Istanbul and Izmir:
  • 150 ALS patients who are living under intensive care conditions at home will be selected.
  • Qualified medical staff will inform the patients, families and family doctors about the disease.
  • ALS patients will be visited at home and informed about the home-care process.
  • A model on home-care of ALS patients will be developed as a result of the project.

Project Results

• In Istanbul and Izmir:
  • 139 ALS patients living under intensive care conditions at home were selected and more than 400 home visits were conducted.
  • Qualified medical staff informed the patients, families and family doctors about the disease and leaflets were distributed.
  • Questionnaires conducted during home visits were analyzed by academics.
  • In order to share the results of the project 2 meetings were organized with the participation of 130 people.