Have you ever heard of Amyotrophic Lateral Sclerosis? Doesn't ring a bell? Yeah, it didn't for me either when I first heard of it. Most people know it by Lou Gehrig's disease. Just about everyone has heard that. Do you know what it is? Yes it's not good to have and most know it kills you. Well, it killed Lou Gehrig anyway.
That was about the extent of my knowledge of ALS until a few years ago. I became a lot more familiar with it when my favorite uncle, Rick Huskey was diagnosed with it
I have always felt that everything happens for a reason. I have yet to figure this one out. It's not that I am owed and explanation, but I sure would like to know. It may make easier for me and my family.
I am not going to profess myself as an expert on ALS, I am far from that. But, what I am is a family member who lost a dear loved one to this horrible disease. I also want to add the pain we feel as family member's is no where near the grief the afflicted go through. Our's is different. It is one without end.
My uncle was in his late 30's when he started to slur his words slightly and was having a numbness in one of his hands. Some of the family thought it may be possible that he had suffered a mild stroke. He worked endless hours to provide for his family, he had a sister killed, there was plenty of stress in his life. The symptoms didn't improve in fact they slowly got a little worse. After several trips to several doctors it was determined that my uncle had Amyotrophic Lateral Sclerosis, ALS or commonly known as Lou Gehrig's disease. The doctor told him in a matter of fact style and that his how my uncle told us. The doctor didn't really explain what was ahead in the road and none of us really knew.
After a little research and more info from the doctor we learned the road ahead was bad and it was a one way road, a dead end. Honestly though none of us including my Uncle really knew how bad it was going to be. I guess it may be tough for a doctor to tell you, "Hey you are going to die from this. I just don't know how long it is going to take." "Yes, some live longer than others, but most live about three years."
I am not saying some people haven't lived many years with this. There are also documented cases where the disease kinda "burns" itself out. The person gets to a certain point and then never gets worse. These cases are rare. Very rare. There is no cure.
How rare is this disease? It is about 1 in 100,000 per year that is diagnosed. If you are white you have about 2.5 times better chance of getting it and most that are diagnosed are between the ages of 45 and 74. It has been around since 1869 and has had a few different names. The most common is named after Yankee's first baseman Lou Gehrig. You know it's never good when they name a disease after you.
To wrap it up, your body and your muscles die. You can't walk, talk, swallow and eventually you can't breathe. The kicker is your mind is just as sharp as the day you die as it was the day you were diagnosed. There are a lot of bad diseases out there that do horrible things to you. However, most of the time they get to your brain as well and you don't know how bad you are. It's another cruel joke of ALS, you know.
It took my uncle about 5 years to succumb to ALS. His suffering stopped, but selfishly ours continues to this day. I miss him terribly and it hurts as bad today as it did the evening he passed. I am a better person for knowing him. I wish my girls would have had the chance. They would have loved him to.
I could write for days about how much he loved his family, life and living. About the talks we had before he died and everything else he had done to make the world around us better. I will write that one day, when I am able. But, that is not what this one is about. It is such a rare disease; there isn't the funding that other diseases get for research. There isn't the awareness. It is mostly the people that have had direct impact from the disease. Educate yourself. Search the ALS association and many of the other organizations that are out there. There are several walks during the year and different benefits. Participate. Spread the word. Don't wait to learn until someone you know is asking what is it?