Assistive Technology in ALS

The Kevin O’Donnell Independent Living Initiative:
 
This initiative stresses the importance of accessing the environment and communicating with others. It includes looking at environmental controls, the use of Cyberlink® to access a computer and the use of a brain-computer interface (BCI). In addition, a library of equipment is being established so individuals can try different options and see which fit their needs.
 
Hospital Rooms at Hahnemann University Hospital “The Sanctuary” in memory of Bo Leboutillier:
 
The MDA/ALS Center of Hope “Sanctuary” is a unique room developed as a prototype for the inpatient care of people with ALS at Hahnemann University Hospital. The Sanctuary is dedicated in memory of Bo Leboutillier. His will to maintain an independent and productive life despite his major disability provided the inspiration for creating this room. The Sanctuary is designed to allow people with ALS who are hospitalized to experience independent living using assistive technology while in comfortable home-like surroundings.
 
This specially-equipped suite provides all of the comforts of home, including a sleep sofa, microwave, refrigerator, computer with Internet access, TV and VCR. In addition, it contains state-of-the-art assistive devices for environmental control to allow the person with ALS to independently control the TV and VCR, as well as the lights, reading materials, telephone, call-bell, computer, and speech devices. Family members will be able to stay overnight in comfort and provide home-like care to the patient.
 
The Sanctuary underscores the commitment of the ALS Hope Foundation, the MDA/ALS Center of Hope staff, the Muscular Dystrophy Association, Tenet, and Drexel University to set the standard of excellence in the community for the care of people living with ALS.
 
“The Dr. Bruce Rosenberg Suite of Hope” made possible by Dr. Bruce Rosenberg and his family:
 
On November 1, 2006, Hahnemann University Hospital dedicated the Rosenberg Suite of Hope for patients living with ALS. An initiative of the ALS Hope Foundation, Hahnemann Hospital and the Rosenberg family, along with other generous donors it is the second room of its kind in the country. Established in honor of Dr. Bruce Rosenberg, a patient diagnosed with ALS in February of 2000, this suite has been created to possess a comfortable atmosphere with a sleep sofa, refrigerator, computer, TV and DVD/VCR. The suite contains assistive devices to allow the person living with ALS independent access to the television and its accessories. There are a variety of switches that can be tried to control the environment. Additionally, the Suite is located in the Pulmonary Care Unit (PCU) for those needing a ventilator.