Amyotrophic Lateral Sclerosis (ALS)
In Memory Of
Samuel T. Willis Jr.
1937 - 1985
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.
My father, Samuel T. Willis, Jr., passed away in 1985 as a result of this disease. Several notable people have also suffered from ALS, including baseball players Lou Gehrig (New York Yankees) and Jim "Catfish" Hunter , PGA caddie Bruce Edwards (Tom Watson's longtime caddie), PGA Golfer Jeff Julian, world-renowned scientist Stephen Hawking, and former NFL players O.J. Brigance (Baltimore Ravens) and Steve Gleason (New Orleans Saints).
Based on U.S. population studies, a little over 5,600 people in the U.S. 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 CARE Database, 60% of the people with ALS in the Database are men and 93% of patients in the Database 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. However, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women.
There are several research studies - past and present - investigating possible risk factors that may be associate with ALS. More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS.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 ten percent will live more than ten years.
There is some evidence that people with ALS are living longer, at least partially due to clinical management interventions, riluzole (Rilutek®) and possibly other compounds and drugs under investigation.
Here is my ALS Ice Bucket Challenge video!