By Deana M. Newman, M.A., C.C.P.
Amyotrophic Lateral Sclerosis (ALS) is a progressive disorder of the brain and nervous system, with no cause or known cure, which over time destroys the patient’s voluntary control of their muscles. As a result, the slow attacking disease can make everyday activities difficult or even paralyze functions such as walking, talking, eating, swallowing, breathing and additional daily tasks. Life expectancy after diagnosis varies from patient to patient, but the average time span is two to five years.
In 1939, New York Yankees’ late-great baseball star, Lou Gehrig, was diagnosed with ALS and later succumbed to the disease at the young age of thirty-eight in 1941. Today, ALS is often referred as “Lou Gehrig’s Disease”.
According to the ALS Association, as many as 30,000 Americans can have Amyotrophic Lateral Sclerosis at any given time and within the ALS CARE Database, a majority of those diagnosed are Caucasian males with an average age of 55 years during the time of diagnosis. However, the disease may also develop in individuals in their twenties and thirties.
Tiffany Macias, a thirty-seven year old woman with ALS, does not fit the criteria of the majority population with ALS as described above, nor is that of her encounter with the disease. In 2005, the East Lansing, Michigan resident, devoted wife and mother of three healthy children was scheduled to arrive at a local hospital to give birth to her third child. As a precautionary measure for a smooth delivery, Tiffany received a non-emergent Cesarean-Section. Shortly thereafter, she experienced a “feeling of sinus-drainage” and “slight change of speech”. During the months and years to follow, her experiences included sinus infections, a mild to severe quiver in her tongue, massive change in speech, visits to several physician offices at multiple institutions and numerous examinations in search of answers. Not until May 2007 did an examination result in an official ALS diagnosis, a disease with no hereditary link.
Today, ALS has severely inhibited Tiffany’s speech, ability to make phone calls and appointments for her family, along with doing things she once loved such as tutoring, reading and singing to her children. Despite her disability, her spirit remains strong. So strong, she has worked diligently to create “Make A Joyful Noise” – an organization to raise public awareness of ALS and funds to support the ALS of Michigan and Muscular Dystrophy Association. The organization will host its first annual spaghetti dinner fundraiser on February 15, 2008 at the East Lansing Hannah Community Center from 4 – 8pm.
“For many of us, life is what you make it to be…” exclaims Tiffany. Through the works of her organization, she is hopeful to channel an important message for others diagnosed with the debilitating disease, “Although you were given a grim diagnosis, you still have a voice and life to live, and though life has changed you’re still able to do many things.”
For more information on the upcoming fundraiser and Amyotrophic Lateral Sclerosis (ALS), visit the Make A Joyful Noise website at www.joyfulnoisecharity.org. Tickets may be purchased at the door or in advance by calling 517-303-5001.
