Every year approximately 5,000 people in the United States are diagnosed with amyotrophic lateral sclerosis (ALS), one of the most common neuromuscular diseases. The disease ultimately affects nearly all voluntary muscles, and patients typically lose the ability to move their limbs, talk, breathe, and swallow. Patients do generally retain their cognitive abilities, though as they lose their ability to move and talk, communication becomes extremely difficult. Similar communication issues may also affect people with other medical conditions, such as patients who have suffered a stroke or traumatic brain injury, and muscular dystrophy patients using ventilators. Although only a small percentage of these patients will experience communication issues as severe as those faced by ALS patients in the late stages of the disease, with nearly 800,000 Americans suffering a stroke and approximately 1.7 million sustaining a traumatic brain injury each year, the effected population is significant. A variety of technologies have been developed to assist ALS patients with communication. These range from low-tech printed communication boards to an array of high-tech Augmentative and Alternative Communication (AAC) devices, many of which include some combination of specialized software and alternate input strategies to facilitate use of a computer. AAC devices such as the Tobii and DynaVox lines of products offer very powerful communication capabilities, but nearly all available devices suffer from the limitation of requirin a caregiver to frequently interact with the device in some fashion. This might involve positioning or plugging in a device like a Tobii product, positioning a mechanical switch so that it is accessible to the patient, or directly working with a device like a communication board. A very important issue that is not well addressed by the available technology is the need for highly reliable communication that does not require a caregiver to be close at hand, and does not require the caregiver to remember to place a device ahead of time. This is particularly important when a patient is in bed at night because (1) a caregiver is likely not close by and may not even be awake, and (2) ALS patients are also likely to need relatively frequent assistance while in bed for repositioning, toileting, and other needs. The proposed research would develop the Blink-based Communication (BLINC) System using infrared (IR) cameras mounted unobtrusively on the ceilings or walls of a patient's bedroom to provide persistent monitoring of the patient, detecting blink signals and providing a virtual call button for summoning assistance. Additionally, the proposed system will provide a simple and robust means to communicate basic requests after a caregiver has arrived.
While the ALS patient population is modest in size, the disease is completely debilitating and patients rely heavily on technology solutions for many needs including communication. Currently available systems provide powerful communication capabilities, but have significant limitations in terms of physical intrusiveness and the need for frequent action on the part of a caregiver to keep the systems available to the patient. The proposed research would develop a non-intrusive, high reliability, high availability, low-cost communication solution for ALS patients.