In 2002 my father was diagnosed with ALS. I will never forget the moment I heard the news, I remember instantly reaching for my computer to search Lou Gehrig’s Disease. “Life expectancy two to five years” are the only words I remember reading before bursting into tears. And then the words, “there is no cure.”
Years later further tests identified his condition as Primary Lateral Sclerosis or PLS – some experts consider it a cousin to ALS others view it as a rare form of the more well-known motor neuron disease. But like ALS, it is progressive and marked by the degeneration of nerve cells that control voluntary muscle movement.
My father has now been living with the disease for over 12 years. While he cannot walk without his power chair and while it is difficult to understand him when he talks, he has remained an extremely productive person, something that was always important to him before the diagnosis. He still writes his column for the newspaper every week. He went to the Brown Family reunion in North Carolina last month. He celebrated his 51st wedding anniversary earlier this year. He also served on San Bernardino’s Citizen Charter Review Committee this year. His newest project is digitizing our family photos and slides – which is a massive undertaking since we have thousands of images that need to be digitized and properly captioned. I look forward to getting his emails almost daily of photos, either alone or with one or more of my siblings, taken over the past 47 years.
Unfortunately only 20 percent of people who are diagnosed with ALS live beyond five years. And the five years they have are extremely challenging ones. It is a debilitating and insidious disease. And since it became part of our national consciousness July 4, 1939, the day of baseball great Lou Gehrig’s farewell speech in which he says that even with the disease he was still “the luckiest man on the face of the earth,” there has been no cure. And treatment for the disease consists mainly of a drug that has proven to prolong life by a few months.
So this weekend the Brown Family joined together to spread awareness and raise money for research and support through the #alsicebucketchallenge, which has raised $16 million so far. We are donating to the MDA Inland Empire & Orange County Chapter and challenging the Inland Empire’s leaders – civic, community, business, and education leaders – to take the challenge. And I am challenging YOU Rants & Raves Readers to either take the plunge or contribute and tag “The IE Voice” on Facebook, #iealsicechallenge, or simply email me. Fontana Mayor Acquanetta Warren, CSUSB President Tomas Morales, Riverside School Board Trustee Brent Lee, Unforgettables CEO Tim Evans, Riverside Mayor Rusty Bailey and Councilman Mike Gardner, I really expect to hear from you!