CHESTERFIELD COUNTY, Va. — CBS 6 recently shared the story of a community coming together and caroling for a beloved mother and wife who was told she may only have weeks to live due to her ALS diagnosis.
Now, in what may be the last days of her life, Tracy Demeyer is using her voice to help others and spread awareness about the terminal disease.
Tracy was first diagnosed with ALS in 2021, and her husband, Steven Demeyer, said it took about a year to confirm what it was.
"It's an ugly disease. It hits people in all different ways," said Tracy. "It started in my limbs."
"How quickly it progresses, where it starts, what symptoms you have — it’s a very difficult thing to diagnose," said Steven.
Dr. Kelly Gwathmey, who works as the ALS Clinic Director with VCU Health, where Tracy receives care, said it’s a wait time many ALS patients experience.
"ALS is still, in 2024, a really tricky diagnosis. The average diagnostic delay is 12 months," said Gwathmey.
It's a disease that, according to Gwathmey, affects the motor portion of a person's nervous system.
"Patients who get ALS will develop painless, progressive muscle weakness of their arms, their legs, their speech and swallow muscles, and ultimately their breathing muscles as well," said Gwathmey. "Patients will go and see a lot of different doctors before ultimately getting a diagnosis."
The disease, she also noted, primarily impacts patients in their 50s to 70s, and although about 30,000 people in the U.S. have ALS, it is still considered rare.
"It really is a very specific type of symptom: painless, progressive muscle weakness that gets worse over time," said Gwathmey. "If that is happening, absolutely seek medical attention."
She added that even though there’s medication on the market and trials underway to help slow the disease, it’s important to do research and go to the doctor if needed, as the earlier it's diagnosed, the better. "I think we all need to do a better job of raising disease awareness and recognizing the signs and symptoms of ALS, so these patients can come to us sooner," Gwathmey said.
A message of awareness that Tracy has dedicated the time she has left to deliver.
"The best piece of advice we got was to stay ahead of it," said Demeyer. "It hit me later in life... so I felt very blessed that I was able to have my children, see them grow up, and hit a lot of their milestones."
For more information about ALS, treatment options, or the rapid clinic at VCU Health in Short Pump, visit their website.
CBS 6 is committed to sharing community voices on this important topic. Email your thoughts to the CBS 6 Newsroom.
📲: CONNECT WITH US
Facebook|Instagram|X|Threads|TikTok
