Too many of us take for granted the simple ability to communicate with loved ones, and with the general world around us. For patients with amyotrophic lateral sclerosis (ALS), such communication is a goal to strive toward, even as their condition deteriorates.
A progressive disease, ALS causes the motor neurons in the spinal cord and brain to disappear. As patients lose these neurons, their muscles no longer receive signals to move. Eventually, people with ALS become paralyzed, and many of them even have difficulty swallowing, speaking, and breathing.
Last week, ALS patients from all over the southeastern U.S. gathered at the Edwin D. Holt Communications Laboratory in Charlotte, N.C. to participate in a clinic to help them access assistive technologies. Using these technologies means being able to communicate once again, after losing this ability while the patients’ ALS progressed.
Patients didn’t mind traveling long distances to attend the clinic because it is the only program in the country to receive The Joint Commission Disease-Specific Care Certification in ALS.
A typical day at the clinic might involve patients learning about particular machines, learning how to use eye gaze technology, or learning how to type faster, depending on their level of physical ability.
At the center, speech pathologists help patients find the right technologies for each patient so they can participate in daily conversation and life, in general, again. For example, patients can relate better to their caregivers so that they can be sure all their needs are met. Or, they can help in decision-making to participate more fully in their lives. And, they can engage in meaningful conversations with loved ones at a more natural pace, thanks to the quickness of new technologies.
“Our goal is to continue being on the forefront of technology for ALS patients, and we are leading the way with research. We want to make every patient that walks in our doors know that we are here for them and will do everything in our power to improve their quality of life and help their families in the process as well,” said Benjamin Brooks, MD, director of the Carolinas Neuromuscular/ALS-MDA Center, to WSOCTV.com.