Being diagnosed with Lou Gehrig's Disease, also known as amyotrophic lateral sclerosis or ALS, is a frightening prospect. It not only leads people to suffer from a debilitating disability, but few people survive more than five years after being diagnosed.
The disease causes progressive degeneration of motor neuron cells in the brain and spinal cord, leading to uncontrolled movements and paralysis. People ultimately have difficulty breathing on their own. In about 10 percent of cases, ALS is caused by a genetic defect, although in the other cases, the cause is unknown. There is apparently a hereditary link in some cases.
There are about 30,000 Americans living with the disease at any given time. One of them is a man who was recently diagnosed with the disease. He says that about two years ago, he noticed a twitch in his arm. He was diagnosed with ALS about six months later. Now, he has lost much of the function of his left hand and about half of his right hand.
The man, who has been married for nearly 20 years and has two children, knows what the disease will ultimately mean for him and his family. But in the meantime he wants to help others, and that's why he and his wife a website and fund that is already worth more than $150,000.
The money is intended to help educate the public about ALS and to contribute to funding for medical research. The man also plans to document the progress of the disease with photographs on his website, along with journal entries.
For the upcoming 20th wedding anniversary, he and his wife will be asking for donations to the fund.
Source: Pittsburgh Tribune-Review, "Living with Gehrig's Disease, O'Hara man steps up," Bill Zlatos, Feb. 16, 2012
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