3 minute read
Serving ALS Patients
FIVE YEARS OF CARING FOR PATIENTS WITH ALS
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Before she was diagnosed with ALS, or amyotrophic lateral sclerosis, in March 2021, Jean Peace played tennis four days a week and enjoyed an active lifestyle that included power walking, kayaking, and paddle boarding.
After her diagnosis, Peace, who lives in Kingsport, had to learn to navigate a new lifestyle – one that will include a motorized wheelchair and a device that she can use to communicate when she loses her ability to speak.
At first, Peace wasn’t sure where to go to find the coordinated care she needed to help her deal with the developing symptoms of ALS (also known as Lou Gehrig’s Disease).
“I googled ALS and found the ALS Association of Tennessee, so I blindly signed up,” she said.
From that contact, Peace learned about East Tennessee State University’s Gary E. Shealy Memorial ALS Clinic, a free clinic that offers a multidisciplinary approach to the care of people diagnosed with ALS.
On February 18, 2022, the clinic, housed in ETSU’s College of Clinical and Rehabilitative Health Sciences, celebrated its fifth anniversary.
The clinic offers patients an opportunity to receive coordinated care from a variety of clinicians in one visit, relieving them from the burden of making multiple trips to different specialists. The clinical care includes neurology, respiratory therapy, physical therapy, occupational therapy, speech-language pathology, nutrition, pharmacy, social work, an assistive technology professional, and an ALS Association liaison.
These clinicians, who are all volunteers, have collectively donated more than 1,200 hours at the clinic, conducting approximately 180 patient visits over the past five years.
“When I went to the clinic the first time, I was bowled over by the attention I received and the number of professionals who spent a lot of time with me,” Peace said. “They tested my strength, my pulmonary function, my speech, my diet, my state of mind, and many other things. There aren’t adequate words to express how much help they have given me.”
Peace appreciates how the clinic has helped her be aware of and prepare for each change that ALS brings, including an eventual need for a speech device. During one of her first appointments, the clinic’s coordinator, Courtney Andrews, recommended that Peace get a Bluetooth keyboard and voice enhancer.
“Also, in the beginning, she told me what voice recorder to get and instructed me how to start recording my speech for later use when I can no longer talk,” Peace said. “She has been an angel sent from God to help me through this journey, and I can’t imagine how I would have managed without her leadership and without the supervision of the staff at the clinic. I would have had no idea I needed to do these things.
“The clinic has been my lifeline in knowing what to do to help ease the difficulties of this disease.”
Dr. Faith Akin, audiologist at the James H. Quillen VA Medical Center at Jean Peace pictured with her daughter Jennifer Humphrey.
Mountain Home and former member of the College of Clinical and Rehabilitative Health Sciences Philanthropy Board, donated funds to create the clinic following the death of her husband, Gary E. Shealy, in 2016. She recalled how she and her husband, along with other patients and their families from this region, would have to drive hours to other universities to attend an ALS clinic and that her hope was that the new clinic at ETSU would ease the burden on patients and their families. The clinic officially opened in 2017.
For the past five years, ETSU Health Internal Medicine at 325 North State of Franklin Road, Johnson City, has donated space for the clinic on the third Friday of each month. All the clinicians volunteer their time, and the clinic’s only funding source is donations from the community.
“Over the past six months, we’ve been incredibly busy with referrals,” said Andrews. “People are learning that we are here and what we do, and we’ve seen an increase in patients. It’s so needed in this area. Every time we work with a new family, it’s a reminder of why we do what we do.”
Melissa Nipper is Director of Marketing and Communications in the ETSU’s Office of University Marketing and Communications. | Photo contributed.
