ALS is a progressive disease that attacks the nerve cells that control voluntary movement. No one knows for sure what causes ALS, and there’s no known cure. Here’s a look at one man’s story.
Like most people in their 50s, “David”* was thinking about how to manage work, helping his children finish college and starting to consider what the next chapter might be, when his wife, “Gina,” noticed that he was having trouble tying his shoelaces. They joked that he was either too stressed or too relaxed, but when David’s left leg started feeling weak, he finally went to a doctor. It turned out to be ALS.
After seeing a neurologist, David and Gina did a little research to understand this disease. They learned that ALS affects nerve cells in the brain and the spinal cord that send messages throughout the body. When these nerves start to die, the brain can’t control muscle movement. Ultimately, patients can become weak and then paralyzed.
“Of course we were completely overwhelmed at first,” says David. “Gina was my rock, but I’m worried about her, too—I depend on her more and more.”
Gina has become somewhat of an expert. “We want to do everything we can to help ourselves now—and we want to help researchers understand more about this disease so that future generations won’t have to even worry about it, ever.”
In May 1939, Lou Gehrig, a beloved baseball player, first brought attention to this disease that sadly bears his name. Over 78 years later, researchers have made some inroads into understanding some of the causes and are working hard to put together pieces of this puzzle.
What’s Being Done
Because learning more about ALS is an important step in the battle to defeat it, the federal Agency for Toxic Substances and Disease Registry (ATSDR) has developed the National ALS Registry to gather confidential health information from people who are living with the disease.
What You Can Do
You can learn more about the Registry from www.cdc.gov/ALS. Dr. Paul Mehta, a medical expert with the ATSDR, explains: “This information can help doctors and scientists learn more as we work toward what causes ALS.”
*Based on real people; the names are not used to protect patient privacy.