When Justin first noticed the twitching in his bicep in May 2019, he didn’t think much about it. He chalked it up to lack of sleep or too much stress during his last year of graduate school. His neurologists at the time weren’t concerned either. That November, they diagnosed Justin with benign fasciculation syndrome—involuntary muscle twitching.
Even though the twitching spread to his legs, chest, back and hands over the next nine months, Justin continued to run and go to the gym regularly. When the pandemic hit in 2020, though, he noticed it got harder to exercise at the same intensity. Another neurology appointment, an MRI and a test called electromyography (a nerve stimulation test that measures electrical activity in muscles) finally revealed a diagnosis.
At 39, Justin learned he had amyotrophic lateral sclerosis (ALS), a condition also known as Lou Gehrig’s disease.
“I remember the day that I was initially diagnosed, standing in line waiting to check out, just trying to wrap my brain around the words that I had just heard,” Justin says. “Where did this come from, and what are we going to do? How are we going to deal with this?”
Watch video of Justin's story on living with ALS
Expertise in Treating ALS
ALS is a rare neurodegenerative disease that gets worse over time. It impacts the nerve cells in the brain and spinal cord, specifically the parts of these cells that signal and control your muscles. As the condition progresses, your muscles weaken, and you lose your voluntary muscle control. Eventually, you can lose the ability to eat, move, speak or breathe on your own.
After his diagnosis, Justin came to the ALS Center at Emory Healthcare for a second opinion and treatment. Emory’s team of experts works closely with the ALS Association of Georgia to deliver sophisticated services. Emory ALS Center is one of the largest, most comprehensive ALS clinical centers nationwide. We currently provide care to roughly 550 patients. In the past 20 years, the team has treated more than 3,000 patients with ALS.
There’s no cure for ALS, so at Emory we provide Riluzole, the only medication approved by the Food & Drug Administration to slow disease progression. We also prescribe other medications to relieve muscle cramps, constipation, fatigue, pain and excessive salivation and phlegm. Additionally, we focus on improving quality of life through:
- Neurology care
- Nutrition
- Occupational therapy
- Physical therapy
- Respiratory therapy
- Speech therapy
“Every patient has their own version of this disease. As a specialist, we might see a thousand different presentations, and patients might progress in a thousand different ways. But eventually, it all ends up in the same place,” says Jonathan Glass, MD, director of Emory’s ALS Center. “This is a complicated disease. Instead of people having to go from office to office with difficulties in transportation and movement, as well as additional cost, we bring people to Emory with all our practitioners.”
The Emory team uses our collective experience to deliver forward-thinking, family-centered treatments.
ALS Research: Unraveling the Mysteries of a Complex Condition
Emory’s team also includes interested patients in our groundbreaking research efforts. This helps us learn more about the genetics behind this disease.
“This is a disease that only affects humans. So, we need to study people. We need to study how they progress, study their genetics, their blood and their spinal fluid,” Dr. Glass says. “We try to categorize people in different ways so we can understand this disease better. Then, we use this information to try to develop new treatments in the lab that we can bring back to patients. It’s a comprehensive approach to disease.”
Overall, Justin has experienced a normal ALS progression. His twitching muscles eventually led to weakness in his arm and leg muscles. Today, he has little ability to move and spends much of his time in a wheelchair.
But one aspect of his disease progression is unusual. While ALS affects his breathing, it hasn’t impacted his speaking or swallowing. Justin wants to help Emory’s experts better understand the cause of ALS and why his case might be different. This is why he enthusiastically participates in the center’s vast research efforts. According to Dr. Glass, patients like Justin have been instrumental in expanding ALS care.
Dr. Glass says Emory has up to five ongoing clinical trials open to patients at any given point. These investigations lead to new medications and targeted therapies that help providers deliver personalized care.
“I have huge hopes for the future. I get up every morning, and why do I go to work? Because I see hope,” Dr. Glass explains. “I see that we’re making progress scientifically. We’re making progress clinically. And even over the last several decades that I’ve been doing this, I’ve seen differences in the way patients are taken care of and how we can actually make their lives better by keeping them alive for longer periods of time.”
Embracing a New Life and Increasing ALS Awareness
When Justin looks at old photos of himself today, he sees a different person. He no longer has the same strength he did when he participated in the Ice Bucket Challenge—the ALS awareness campaign that swept social media in 2014. But he’s found different ways to appreciate and enjoy life.
“It’s given me a different outlook on life, a different appreciation for life, a different appreciation for the little moments of watching Wheel of Fortune or Jeopardy at night with my daughter … It’s the little moments that I really do treasure.”
In June, Justin and his family also partnered with Emory Healthcare and the Atlanta Braves to celebrate ALS Awareness Day. They took to the field before the game to increase familiarity with this complex, little-understood disease. Justin’s son Gage threw the first pitch. As a lifelong Braves fan, Justin says he’s thrilled he and his son have that memory together. But he is also grateful for the opportunity to spotlight ALS in such a public way. Doing so presents a chance to encourage other patients with ALS to live life to the fullest.
“It is a terminal illness. There is no cure, but there’s still life to live, and there’s hope to hold on to,” Justin believes. “I just want to try to help people find hope and find that, hey, life is good. Life is beautiful, and it’s worth living to continue to pursue for as long as you possibly can.”
If you or someone you care about has received an ALS diagnosis, contact us at 404-778-7777 to schedule an appointment or visit us online to learn more about Emory Healthcare’s ALS Center and how our compassionate approach will help you achieve the best possible outcomes.
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