ALAMANCE COUNTY, N.C. — It was Halloween 2020. While families were trying to decide if they should take part in All Hallows’ Eve amid the pandemic, in the grand scheme of things, Debbie Dickerson’s day-to-day had largely gone unchanged.
“Life was normal,” she said. “Totally normal.”
On that night, however, she did notice something new for the first time. Still, it didn’t cause her any worry, despite continuing into November and beyond.
“I had noticed that there were some like muscle twitches for months. But it was here and there. Not too bad,” Dickerson said.
An accountant for UNC, Dickerson started experiencing migraines, which led her to a neurologist. During the visit, she says she described the twitching, which had moderately spread to her arm, leg and face. It was a testimony that led the doctor to decide she needed to be tested for multiple sclerosis, and she was ordered to have an MRI on her brain.
“So I did that, and that was clear. So then they didn’t know what to think,” she recalled.
The all-clear from the MRI resulted in more testing with another neurologist, including blood testing and an EMG, or electromyography, which is used to help detect neuromuscular abnormalities.
The testing carried her all the way to December of 2021 when she met with a doctor once more.
“That day, he told me he was about 60-percent sure that I may have ALS,” Dickerson said.
ALS (amyotrophic lateral sclerosis) — also known as Lou Gehrig’s disease — is a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord, according to the ALS Association.
When an ALS patient’s motor neurons die, the ability of the brain to initiate and control muscle movement is lost, the association says. When voluntary muscle action is progressively affected, people may lose the ability to speak, eat, move and breathe.
No one has ever survived ALS.
Still, at the time of that December visit, Dickerson says she knew nothing about the disease. She needed to wait three months to see another specialist, which allowed her to research and mentally prepare.
“When I got there, they basically said ‘it’s not needed. We know you have ALS,’” she said.
Dickerson knew, at that point, she likely only had two to five years to live.
“You gotta think positive…I’ve had my moments because I know that this is terminal,” Dickerson said.
Despite the debilitating diagnosis, Dickerson, the self-proclaimed introvert, is allowing the disease to free her.
“I don’t know if I’m gonna be in a wheelchair three months from now, six months from now, a year from now or many years from now. I know that, unless they find a cure, it will happen,” Dickerson said.
Since her official diagnosis in March 2022, Dickerson has traveled to events where she’s met fellow ALS patients, including an “I Am ALS” even in Washington, D.C.
“They put 6,000 flags on the National Mall, one for each person diagnosed a year,” she said.
Through those meetings, Dickerson is now shifting her focus to advocating for ALS awareness. She’s finding the courage and strength to do so in everyone she comes across who’s facing the same disease.
“There’s drugs out there in clinical trials that need to be approved. But by the time they’re approved, people with ALS right now may be gone,” she said. “It’s kind of given me a purpose for this because I have no control over it. Most things in life you have some control over. This you don’t.”
Dickerson is currently dealing with minor symptoms, specifically in her right arm. She also experiences body aches and stiffness in her legs.
“This arm will probably go paralyzed first,” she said about her right arm. “And then, normally, it would go to the other side.”
Before her right arm could lose function, she approached the pitcher’s mound at First National Bank Field before a Thursday night Greensboro Grasshoppers game. But it wasn’t just any Thursday; it was Lou Gehrig Day, which is used to increase awareness of ALS, which took Gehrig’s life. On this night, the first pitch belonged to Dickerson, who throws with her right arm.
“I mean, what would be the alternative? Sink down into a dark place? No. That’s not me,” Dickerson said.
From the front of the mound, Dickerson took a stride and hurled the ball past the glove of the man positioned behind the plate. Perhaps, a sign she’s positioned to surprise.
“Right now, I’m 46 years old. Statistics say I may not make it to 50. I’m hoping not to be a statistic,” she said. “I want to grow old with my husband. I want to see my future grandchildren.”
For the time being, Dickerson’s plans for the summer include participating in more ALS awareness events, going to concerts and on a cruise.
“I know this is kind of cliché, but I’m going skydiving sometime soon,” she added.
Two things are for sure:
One, the disease is progressing in Dickerson’s body. At this point, they don’t know how quickly.
“That’s probably been the hardest thing. The unknown,” she said. “The unknown is rough.”
Two, Dickerson doesn’t plan on going down without a fight.
“I told somebody, ‘this could either ruin me or strengthen me,’ and I feel like it’s strengthened me,” she said. “So that’s where I am right now.”
Dickerson’s next appointment is in less than a week. She has agreed to let FOX8 document her ALS journey as it progresses, and we will be regularly updating this story.