Love and death

Perhaps you’ve heard of Lou Gehrig? Or maybe you knew my mom, Dorothy Speck, or her Aunt Mary, or my brother Larry Speck? You might even know me. I’m the only one still alive.

ALS—amyotrophic lateral sclerosis—has struck all of us. ALS is a killer, a serial killer. In my family, we have a genetic mutation called the SOD1. On the exon 5, our mutation is called E133A. Means nothing to you, no?

To me and my loved ones, it means death.

Last year, on May 6, my brother Larry was diagnosed with ALS. He died June 22. I was angry because he’d been misdiagnosed—how could the doctors have been so unaware? There is no cure for this progressive disease, but maybe Larry could at least have had more fun before he died. Instead he just suffered and worried. Later, we packed up his house and sorted through his things with him, tossing away memories and plaques of accomplishments.

Larry died in his sleep—quietly and gently, just like he lived his life.

For me, the ALS experience has been different. It sounds strange, but I have come to believe my death sentence is a gift. Because when you know death is coming soon, your perspective changes. Life is wonderful. Love abounds. The goodness in people everywhere flows freely.

Also, I feel blessed because I have the time to spread the word and help raise awareness about ALS. Are you aware that May is ALS Awareness Month?

This is a disease that affects the function of nerves and muscles; a person’s body basically shuts down while the brain continues to function. Based on population studies, a little more than 5,600 people in the United States are diagnosed with ALS each year. (That’s 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time. According to the ALS Clinical Assessment, Research and Education database, 60 percent of the people with ALS are men, and 93 percent of patients are Caucasian. Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis.

There are several research studies investigating possible risk factors that may be associated with ALS, but more work is needed to determine what genetics and/or environmental factors contribute to developing this disease.

Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to 10 percent will live more than 10 years.

Only 5 to 10 percent of ALS cases are genetic, or familial. Mine is one of those rare families, and I am carrying on that family tradition. This type of ALS strikes at a younger age, and usually kills people more quickly than does sporadic ALS. And despite what use to be believed, let me tell you—the effects of ALS are indeed painful.

But I am not complaining. I want to help raise awareness and funds for ALS research. It was “named” in 1869, yet still we have no cure. Please join us on the Awareness Train. All aboard?