Dropping by my Mom's house as I did every Saturday around noon or so, I noticed her speech was a bit slurred. 'Mom, you sound as though you've had a couple drinks. You should call your doctor'. That was April of 2005 and the start of my Mother's journey with ALS, Amyotrophic Lateral Sclerosis, Lou Gehrig's disease. On November 29, 2005 she was given the diagnosis for a disease with no known cause and no known cure. On January 2, 2007 she lost her fight.
My Mother was a singer. Old letters from college friends found after she died indicate she had been offered a contract with the Met in the late 40's or early 50's. She never once mentioned this to any of her 5 children. Her ability to sing was, she told me, the first thing to go. A cruel disease, but not one particular about who it picks.
All the literature and research indicate that this is an 'orphan' or 'rare' disease. But how can we be sure when there isn't a repository for information gathered from ALS patients? There isn't a registry to indicate exactly how many people have this disease. Death certificates don't list ALS as the primary cause of death: my Mother's indicates respiratory failure as the primary cause, ALS as the secondary cause.
Please help us advance research and awareness of a disease that remains a mystery more than 60 years after Lou Gehrig said 'I may have had a tough break, but I have an awful lot to live for'. Help those with ALS, who have a lot to live for, continue to do so!
Thank you for your time.