In 2007, my uncle whom I had been very close with all my life, began to slur his speech. After several visits to many doctors, he was finally diagnosed with ALS. And thus began the most heartbreaking and life-altering experience for him and everyone who loved him.

The progress of the disease was rapid affecting him from the “top down” meaning his respiratory effort, his ability to move his upper body, neck, jaw, everything just seized. He literally became a man trapped in a body that just would not move. One of the things about ALS that was so terrifying in our case and for about 80% of those affected by ALS is that the mind is left untouched, but the body completely shuts down until it just can’t function anymore, leading to death within a few years of diagnosis. There is no cure. There is no treatment.

My uncle faced each day with such a brave attitude and solid determination to be the man we had always known and loved. He had to eat through a stomach tube. He couldn’t speak, necessitating the use of a machine supplied by the ALS Chapter to type out sentences. He couldn’t hold his first grandchild and had to struggle with every ounce of energy he could muster to walk his daughter down the aisle at her wedding shortly before he could no longer walk. I will always have vivid memories of a private section set up for his suction machine so he could breathe without fear of choking on his own saliva.

My Uncle’s favorite thing in the world was having his whole family together on the holidays telling eyeroll-inducing, canny jokes, reminiscing about days past and enjoying his favorite coconut cream pie. Before he was bedridden, he would sit at the holiday table with all of us looking at the pie that he could no longer even open his mouth to eat, and simply gave us a thumbs up to enjoy. He always did his best to be as much a part of life as he could before it was rapidly and cruelly taken from him. He became a prisoner in his own body until it just gave out. We tried to laugh when we could. We loved him with everything we had in us and gave him as much comfort as we could through our own tears. To this day, I can’t even talk about it without welling up.

This was my first up close and personal experience with ALS, and it has very much permeated my consciousness. As a coincidence, I happened to make the acquaintance of someone who works for the local Chapter and made the connection with me and my uncle whose name she knew from the support the Chapter had offered my uncle and his family. From that point on I became involved with the Chapter whenever I could, and we continue to stay in very close touch.

As rare as ALS is, it has touched my life a few times. My uncle is my mother’s brother and my father told me that his mother died from it as well long before I was born. My dad was only 18 years old when she died. Years later, I had a business friend who was the most robust, energetic and kind family man and he too, was diagnosed with ALS. His journey was short, and he quickly lost his battle, too. My friend’s type of ALS was the “bottom up” form, suffering paralysis of the lower limbs first which gave him a little longer than my uncle, but none-the-less his life was cut way too short and too fast much like my uncle.

As a result of this intimate exposure to ALS, I make it a point to make The ALS Association Greater Philadelphia Chapter the charity of my choice and remain involved. We are all connected in some way, perhaps in many ways we don’t even know about. ALS affected me long before I even knew what it was aside from a baseball legend having it. Look around you and take in how the world affects you and perhaps more importantly, how you can affect the world where you stand.

Thank you for visiting this site to pay tribute to my uncle and your consideration of a gift to help join the fight. It is appreciated more than you will ever know.