Opinion
Opinion

Understanding Amyothropic Lateral Sclerosis

Cancer, HIV/AIDS, Heart Disease: All of these illnesses are well known around the world with the hopes of someday finding a cure.

Amyothropic Lateral Sclerosis or ALS, better known as Lou Gehrig’s disease, is also a life threatening illness plaguing 5,600 people each year according to alsa.org. However, not many people have ever heard about this disease before or even know what it is.

I believe that more awareness should be brought about concerning ALS. Maybe then we could be one step closing to finding a cure.

Lou Gehrig’s disease attacks your immune system. It kills the nerve cells (motor neurons) in the brain and spinal cord making it so they can no longer send messages to the muscles to control or initiate movement.

Because the muscles stop receiving messages from the brain or spinal cord, they eventually began to weaken and die. This leads to paralysis. Patients will eventually lose the ability to breathe or swallow.

Since ALS only attacks motor neurons, the sense of sight, touch, hearing, smell and taste are not affected. Basically, the sufferer is fully aware of what is happening to his/her body but cannot do anything about it.

Like many people, this disease was unfamiliar to me. I had never heard about it before until a family member of mine was diagnosed with it.

Vincenzo Ruggieri, my uncle, was a kind man who could brighten anyone’s day. Born and raised in Italy, he moved to America with his family where he eventually met his future wife, my aunt. They opened an Italian restaurant together in Lodi, New Jersey, called “Restorante Vincenzo.” My uncle Vinnie was the head chef. He cooked meals that tasted too good to be true. He had so many loyal customers over the years that he considered them to be family.

When I was younger, most of my memories are of him walking out of the restaurant kitchen wearing his pajama pants, a white t-shirt stained with oil and sauce, and an apron screaming, “Son of a bitch, it’s so god damn hot!”

He never had the cleanest mouth but he meant well. My uncle Vinnie had a way about him that even when he was saying things that did not sound appropriate, you could not help but laugh.

He had a love for food and life that I had never seen in a person before. So, when he was diagnosed with ALS, I guess I never thought anything of it because my uncle was always so positive; he never made it seem like he was ill.

His symptoms came about like other common cases of ALS. He started to lose feeling in his hands and his feet. He started to drop plates in the kitchen and as much as my uncle Vinnie adored cooking, he then knew it was time to stop.

Even when he was permanently moved to a wheelchair, you could find my uncle with a smile on his face and a glass of red wine by his side.

Lou Gehrig’s disease comes in three different forms, but the most common form is sporadic. According to alsa.org, sporadic is 90 to 95 percent of all cases. This is the type that my uncle had. There is no history of it in his family. One day he just woke up with it.

I think that is the scariest part about this disease. That is can happen to anyone at any time. However, the most common age of people diagnosed with it are between 40 and 70.

There is much awareness out there of how horrible cancer and other incurable diseases are. Many foundations are around today trying to raise money and do anything else that they can to find a cure for illnesses that we hear about on a daily basis.

But what about the diseases that we don’t hear about every day? Does that make them less life threatening? No. It just means that we need to be educated on more illnesses and spread the wealth of trying to eventually find cures.

My uncle Vinnie was able to talk until the very last weeks of his life. When he was talking he was always concerned with how everyone was and if we were hungry. It was mind-blowing to me that my uncle was so troubled with his family being hungry when he was the one suffering. He was a great man and I swear I have never heard a person say a bad word about him.

ALS took my uncle away from me on February 8, 2012. This disease transformed a beautiful person I loved right before my eyes. I never even knew what this disease was but after experiencing it thorugh my uncle, I believe everyone should know what it is.

Even though Lou Gehrig’s disease is a wretched illness, it never changed my uncle’s heart. He passed away the same loving man that he always was and that will forever be my memory of him.

PHOTO COURTESY of Jacklyn Kouefati