While many people may not have heard of amyotrophic lateral sclerosis or A.L.S., they probably know the degenerative neurological condition as Lou Gehrig's disease, which forced the baseball player to retire in 1939.
According to the A.L.S. Association, the disease afflicts an estimated 30,000 Americans and strikes people between ages 40 and 70. Early symptoms include weakness in a hand or foot, followed by difficulty with speaking, swallowing and walking. As the disease progresses, nerve cells waste away or die and can no longer send messages to muscles, leading to muscle wasting and paralysis, and eventually death. The disease affects about 1 in 100,000 people.
In the latest installment of Patient Voices, Karen Barrow, a producer for The New York Times, speaks with six men and women who share how their lives have changed as a result of this devastating illness.
You will meet Wes Rose, 37, a father of two young boys in Glenside, Pa., who shared his fears with his wife about the effect his illness would have on his sons. "I was upset what kind of life my boys would have with a disabled father," Mr. Rose said, "and she said, 'If you're strong with this, they'll learn strength from you.' I really am trying to make this as positive as possible for them, to make it a learning experience rather than a whole lot of negativity."
Another person you will meet is Eric Lowen, 57, of Valencia, Calif., who developed the first signs of A.L.S. in 2002. Mr. Lowen said that despite the limitations of his disease, he still had fun on vacations with his family but worried about the toll his illness was taking on them.
"The hardest part for me is the pain I'm bringing everybody, the fact that my children have to deal with it, my wife," he said. "I wish I could disappear quietly, but it doesn't work like that."
To listen to all the voices of A.L.S., click on the Patient Voices link. And check out a video recording session with Mr. Lowen, who co-wrote a song, "Learning to Fall," for patients with A.L.S. and their families. His voice remains strong, and you can watch the recording session on the video link below. (The song begins about two minutes into the video.)
