Friday at the Carolinas HealthCare System’s Neurosciences Institute, patients with amyotrophic lateral sclerosis (ALS) from all over the southeastern United States gathered in the Edwin D. Holt Communications Laboratory for a clinic that would give them access to technology that allows them to communicate with their friends and family.
ALS is a progressive disease that causes the motor neurons in the brain and spinal cord to vanish, so that the muscles no longer receive signals to move. ALS causes the body to eventually become paralyzed, and can make it difficult for patients to swallow, speak, or even breathe.
Charlotte ALS patient Patrick Northrup has been coming to the center for two years now, and over time it has become more and more difficult for him to physically get his words out. His wife Hilary says they are both grateful to have access to technology that allows them to stay in touch.
“He’s such a verbal person that these text to speech programs add to his quality of life,” Hillary said. “Patrick is now able to communicate with friends and family, either long distance or nearby, so having those conversations that let everyone know what is going on is extremely important to us.”
Many patients that came to the clinic on Friday will travel great distances to attend, because it is the only program in the nation to receive The Joint Commission Disease-Specific Care Certification in ALS.
In addition, they can get all of their needs taken care of in one day, such as speech therapy and the technology that comes along with it, which is now receiving national attention from major news outlets.
“CNN Newsroom” with Suzanne Malveaux will be airing a three-part series beginning July 1 entitled “Fighting ALS.” In this series, Malveaux speaks with strong figures in the ALS community, such as former NFL player Steve Gleason, who can no longer verbally communicate and must rely on speech-generating devices or other methods of communication.
Amy Wright, a speech pathologist at the center, helps ALS patients identify and implement a way to communicate so they can participate in day-to-day decision making and conversations with their loved ones and caregivers regardless of physical limitations.
“During clinic days like today, we see patients that may need assistance with programming or understanding functions with their particular machines. We do the troubleshooting for them, give them training on how to use the eye gaze technology, or even show them ways to type faster and use shortcuts that will cut down on how long it takes them to participate in a conversation,” Wright said.
Some of the software can be expensive, but Wright also teaches patients how to use an app on their iPad for a cheaper alternative.
“Some patients really like texting or emailing, so this is a great transition for them, many pick it up pretty quickly and they can even use it for phone conversations by holding the iPad or laptop up to the speaker phone,” Wright said.
Along with speech therapy, patients who attended Friday’s clinic also see the specialists who work with ALS patients, such as neurologists, nutritionists, social workers, and even people who help them figure out their expenses.
“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.
For more on the text-to-speech technology or the latest developments on ALS research, contact http://www.carolinashealthcare.org/neuroscience.