OUR HEALTH Minor Symptoms Turned Out To Be A Major-League Disease

Posted by Dorothy on
The more Americans living with ALS learn about the disease the better they’ll be able to deal with it.
The more Americans living with ALS learn about the disease the better they’ll be able to deal with it.

(NAPSM)—Like most people starting retirement, Angela S.* was thinking about how to manage volunteer work, help her children finish college, and just starting to consider ‘‘what’s the next chapter,’ when her husband, Shawn, noticed that she was having trouble tying her shoelaces. They joked that she was either too stressed or too relaxed, but when Angela’s left leg started feeling weak, she finally went to a doctor. It turned out to be Amyotrophic Lateral Sclerosis (ALS), called ALS, sometimes called Lou Gehrig’s disease. ALS is a progressive disease—it gets worse over time—that attacks the nerve cells that control voluntary movement. No one knows for sure what causes ALS, and there is no known cure.

After seeing a neurologist, Angela and Shawn did a little research to try 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 totally weak and then paralyzed.

“Of course we were completely overwhelmed at first,” says Angela. “Shawn was my rock, but I’m worried about him too—I depend on him more and more.”

Angela 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.”

May is ALS awareness month. In 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.

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. 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 towards what causes ALS and possibly better treatments.”

*Based on real people; the names are not used to protect patient privacy.