Five years of caring for patients with ALS

JOHNSON CITY, Tenn. (Feb. 17, 2022) – 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 soon 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 Feb. 18, 2022, the clinic, which is housed in ETSU’s College of Clinical and Rehabilitative Health Sciences (CCRHS), will celebrate 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, serving 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 James H. Quillen VA Medical Center at Mountain Home campus and former member of the CCRHS 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 N. 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.”

ETSU students also benefit from the clinic. Over the past five years, approximately 50 students from multiple health programs within CCRHS have volunteered under the clinical supervision of their instructors. 

“Working in this clinic with this disease was especially rewarding to me as I have a close friend who was diagnosed with ALS in 2021,” said Tiffany Mikkola, a physical therapy student from McMinnville. “It brings me a lot of comfort to know that programs such as this, and the wonderful people who work in them, exist to make sure these patients have the best possible care.”

Under the supervision of her professor, Dr. Allie Bourassa, Mikkola performs tests that assess range of motion, strength, coordination, endurance, as well as the patients’ ability to walk, negotiate stairs, and get in and out of bed. Through these tests, the clinicians are able to educate the patients on what to expect and to assist them with devices to help them as the disease progresses.

“This was also the first time I have been part of an interprofessional team, so it was amazing to see the interactions among the different medical professionals and just how beneficial that interprofessional relationship can be,” Mikkola added.

The core group of faculty has remained consistent since the clinic began five years ago and is looking forward to the clinic’s continued growth.

“It’s something that we’re all passionate about,” said Dr. Michelle Lee, a registered dietician and ETSU professor. “I’ve been in health care for 30-plus years and been part of many teams, but this is the most special team. We care about each other and that makes a big difference in caring for our patients.”

To learn more or to donate to the Gary E. Shealy Memorial ALS Clinic, visit etsu.edu/crhs/als-clinic/.