Your Health Seth Stratton | one year ago

10 Noteworthy Facts About Our ALS Center

Remember the “Ice Bucket Challenge” that swept the nation in 2014? The challenge was successful in raising awareness and supporting research into Amyotrophic Lateral Sclerosis (ALS). But still, the disease affects roughly 30,000 people in the United States, with thousands more diagnosed each year. 

Carolinas HealthCare System’s Neurosciences Institute has been building its Neuromuscular/ALS-MDA Center for the purpose of improving treatment and finding a cure for ALS. And experts all over the world are looking at the ALS Center in Charlotte as a model for the care they want to deliver.

So what it is about this center that is capturing the interest of ALS researchers?

1. The team makes a significant contribution to local, national, and international conferences and symposiums. Setting the standard for delivering optimal care, the ALS team is frequently invited to present their research, best practices and some of their more advanced medical techniques. 2. The Neurosciences Institute regularly receives national recognition and awards for its service. The team received the first-ever Disease-Specific Care Certification in ALS by The Joint Commission, which is an independent, nonprofit organization, that accredits and certifies nearly 21,000 healthcare organizations and programs in the United States. 3.The director of the center, Benjamin Rix Brooks, MD, was honored with the prestigious Forbes Norris Award. The International Forbes Norris Award, an honor from the International Alliance of ALS, is given annually to a physician recommended by peers in the ALS community for exhibiting exceptional care and compassion in the study and management of ALS. Dr. Brooks was the 19th recipient of the award and only the 10th American to be so honored. 4. The ALS Center is an influential leader in clinical trials and research. The team participates in clinical trials, which give patients access to the most innovative medications on the market. They played a key role in the development of two major FDA-approved therapies for ALS in the past; and are currently involved in clinical trial in which they are the first in the world to conduct. 5. It’s the first place in the country to give a robotic arm to an ALS patient. The team’s physical therapist made it possible for a Charlotte, NC, man to be the first person in the US to receive an innovative robotic arm. With the technology’s help, he’ll be able to shave, open the refrigerator to grab a snack, play with the family dog and even scratch an itch. The robotic arm connects to the wheelchair and can help with daily tasks to make life a little bit easier. 6. The team has weekly meetings to discuss the status and care of each patient. At this ALS Center, patients receive interventional therapies ranging from nutrition, respiratory, physical and speech therapies. These therapeutic services are geared toward helping patients maintain their independence. The team’s experts gather weekly to collaborate and come up with the best, individualized treatment plan for each patient. 7. It is one of few ALS centers in the country with a full-time staff dedicated to ALS. Carolinas HealthCare System has one of the rare centers that maintains a full-time staff solely focused on patients with ALS. They take it a step further with home health nurses to ensure patients receive treatment in the place they’re most comfortable 8. They provide, assist and train patients how to use state-of-the-art voice technology. While ALS has many symptoms and effects on the body, one of its most frustrating is the fact that the disease makes it extremely difficult for patients to swallow, breath or speak. The team has speech pathologists who help ALS patients identify and implement ways to communicate. Not only is software provided, but assistance with support and programming is too. Some of the software can be expensive, so the team also teaches patients how to use an app on their iPad for a fraction of the cost. Another related service is called “voice banking” which records the patients’ voice while they have it so the technology can emulate them later on 9. There is an emphasis on the incorporation of exercise with traditional therapy. Exercise can provide tremendous benefits to ALS patients. The team at the Neurosciences Institute firmly believes exercise is key to a patient’s quality of life so it is incorporated into treatment plans whenever possible. 10. Experts use technology to help improve diet, nutrition and early diagnosis of ALS. Another example of effective use of technology is a machine that measures how many calories the patient’s body uses each day. That number determines the patients’ metabolic rate, which can also help with the diagnosis of ALS and play a role in the formation of a care plan.   Learn more about the ALS team