Justin Upchurch: ALS Warrior
When Justin Upchurch was challenged to participate in the ALS Ice Bucket Challenge in 2014, he knew very little about the disease. Nine years later, he volunteers with two ALS organizations, and he’s a member of two support groups, because he is living with ALS.
“I noticed symptoms in May 2019,” said Upchurch, 42. “My biceps would start twitching on their own. I attributed it to lack of sleep, stress, and a busy life. I was working full time while in graduate school, and taking care of my family.”
When Upchurch finished his Masters program that August, the twitching had increased in his arms and spread to his legs and chest. At his wife’s urging, he went to a neurologist, who diagnosed him with a benign syndrome that causes involuntary twitching. Upchurch was relieved, but his concern resurfaced the following summer.
“I went to the gym and couldn’t lift the weights I was used to,” said Upchurch. “I was having to put in much more effort. My endurance was low, I was having hand dexterity issues, and the twitching was still happening.”
Upchurch met with a new neurologist in October 2020 and began a series of tests. The doctor told Upchurch early on that he suspected he had ALS (which stands for amyotrophic lateral sclerosis and is best known as Lou Gehrig’s Disease) and gave him the formal diagnosis on Dec. 3, 2020.
“My shock over the news wasn’t as severe as it could’ve been because after the doctor brought it up weeks prior, I did a lot of research on my own,” said Upchurch of Lawrenceville. “I had time to contemplate it, let it sink in, pray about it, and something internally told me the doctor was right and I had ALS.”
When Upchurch and his wife of 22 years, Suzanne, sat with their three children to share the news, they made a promise not to hide or sugarcoat anything. They answered every question and encouraged their kids — Emily, 24, Laurel, 19, and Gage, 17 — to speak with a counselor or therapist, and they validated all their feelings.
“I don’t subscribe to toxic positivity, the assumption that everything is great all the time, because of course that’s not the case,” said Upchurch. “But I decided early on that I would allow myself to feel every emotion, the anger and sadness, but I refused to stay in a bad state of mind. I think a negative mentality would kill me quicker than the disease itself.”
A few weeks after diagnosis, Upchurch was lying in bed, unable to sleep, when two phrases kept reverberating in his spirit.
“‘God is good’ was one,” said Upchurch. “I am not mad at God, and I don’t blame him. It’s just one of those things that is unfortunate but is part of life. It doesn’t take away from the goodness of God. The second thing was ‘Love always hopes,’ which has become our mantra throughout this whole thing. It’s still tough to deal with. My wife and I still have our moments when we cry together, because to a degree we feel cheated, but we continue to move forward the best we can and trust in God throughout this journey. Whatever the end looks like, whenever that occurs, God has a bigger plan. Our faith is carrying us through.”
ALS is a fatal motor neuron disease that targets nerve cells in the spinal cord and brain. Approximately 5,000 people are diagnosed in the United States each year. As the disease progresses, ALS affects control of the muscles needed to move, speak, eat and breathe. The average life expectancy from diagnosis is two to five years.
Upchurch chose to use medical retirement from his job in human resources in May 2021 when he was still able bodied. He took time to travel with each of his kids, one on one, and they all took a road trip to the Grand Canyon.
“You simply don’t know how long you have until you’ll lose an ability,” said Upchurch. “I wanted to spend my time living life exactly how I wanted to.”
Today Justin relies on a breathing machine nearly 24 hours a day. He uses a power chair and a voice machine that helps him control things that he once controlled with his hands, like the phone or his iPad, with voice commands. He works with a nutritionist, as well as speech, respiratory, physical and occupational therapists.
Upchurch is involved with an organization called I AM ALS, as well as the Georgia chapter of the ALS association. He is currently raising money for the latter’s upcoming event, the Walk to Defeat ALS, which will be Sept. 23 at the Georgia State University stadium. It is Upchurch’s third year participating. He also attends a support group in person once a month and a weekly support group via Zoom that’s nationwide.
“Speaking to other individuals with ALS is comforting,” said Upchurch. “We help each other with tips and tricks and sometimes even laugh about our situation. I miss working, setting goals, and being part of a team. Being involved with the ALS community fills that hole. I can utilize my strengths, abilities, and experience to help — to get drugs approved, legislation passed, funds raised. It may not have a direct benefit for me, but maybe down the road it’ll lead to a cure. I want to do my part for as long as I can.”
To learn more about how you can support Upchurch’s fundraiser for the Walk to Defeat ALS, visit www.alsaga.org, click on Events, click on Walk to Defeat ALS, and search for the “Love Always Hopes” team.