In August 2012, my father, Robert, was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Unfortunately, there is not a cure. My Father passed away April 18, 2015 and I continue to dedicate my life to raising awareness for this relentless disease and most importantly, making a difference in the lives of the thousands stricken each year.
Like so many others, at the time of my father’s diagnosis we hadn’t heard of ALS. Almost immediately, we began a desperate search for information about this disease, which without warning changed our lives forever. What we found was genuinely frightening, bleak and grim.
ALS is an always fatal neurological disorder characterized by the progressive degeneration of nerve cells in the brain and spinal cord. As motor neurons are destroyed, a person loses his or her ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years. As of now the cause is not known. And there is NO CURE…
ALS affects everyone differently. For my father the disease began with muscle weakness, fatigue and slightly slurred speech. The symptoms were so mild at first that they were the largely ignored and thought to be something else completely. At the time of his diagnosis in August of 2012 my father was working double shifts as a Correctional Officer. Seven months later he was forced to retire at the age of forty-nine, as he no longer had the strength to work.
Throughout his life my father was always active. He loved the outdoors, was an avid handy man and held a life-long passion for cooking. I’m not sure if this made the disease more difficult to bear, but was a constant reminder of life before ALS. My dad and I loved music and also loved to share a dance together. We danced to our favorite song every time it came on. New Year’s Eve 2014 our song came on, however my father was too weak to hold my hand and we sat listening to the song, being reminded of all the memories we shared. My Father inspired us all with his courage, his sense of humor and his love of life.
Now you understand why this is so important to me and why I’m asking for your support. So if you join me- I would greatly appreciate it and you will certainly be making a difference.