Apparently, I have a lot to say. This entry is my 100th published blog post. Many bloggers write every day and so their 100th post hit the Interwebz within a few months. I began writing this blog at the end of August 2012. At first, I was happy if I managed to write something each week. Lately, I seem to have fallen into a natural cycle of twice-weekly blogging.
I was thinking I should come up with something clever, or at least somewhat entertaining, for this auspicious occasion. But today’s date, May 1, begins a monthlong campaign of ALS awareness. I realized that since this blog owes its existence to the invasion of ALS into our lives, today I’d like to share a few bits of information about this cruel disease.
Let’s start with its name. Amyotrophic lateral sclerosis. Also known as ALS and Lou Gehrig’s disease. Known in the UK as motor neuron disease or MND. Here in the United States, ALS and Lou Gehrig’s are used almost interchangeably. In 1939, famed Yankees baseball player Lou Gehrig was forced to leave the game he loved because of worsening symptoms of ALS. Thus, his name became linked with the disease. Gehrig died in 1941.
“Amyotrophic” comes from Greek and means “without nourishment to muscles”. “Lateral” (“to the side”) refers to the location of the spinal cord affected. “Sclerosis,” meaning “hardened,” is a description of the nature of the spinal cord in the advanced stages of the disease.
The disease was first described by French neurologist Jean-Martin Charcot in 1869. ALS usually strikes in the mid to upper 50s, although it can strike at any age. Researchers believe there may be multiple causes of ALS. In a small percentage of cases there is a familial link, but the vast majority are sporadic. ALS cannot be “caught” like a virus.
In over half of ALS cases, early symptoms can include a painless weakness of a hand or foot, or an arm or leg. Sometimes the first symptoms are difficulty speaking or swallowing. Because motor neurons are losing the ability to communicate to the muscles, those muscles atrophy and movement becomes more and more difficult. Eventually, the muscles involved in breathing are affected.
It has been 75 years since Lou Gehrig said goodbye to baseball. I think it’s about time we said goodbye to ALS. A lot of research is underway, and a lot of it shows promise. But much more needs to be done. We still don’t have an effective treatment, much less a cure.
A diagnosis of ALS, as with any life-threatening illness, is like tossing a stone into a pond. The ripples reach far beyond where the stone entered the water. Spouses, children, parents, siblings and friends are all affected in one way or another, along with the patient. Lives are turned upside down sometimes.
There are times when I feel frightened or angry or just plain sad. Thank God this does not happen too often. I am not afraid of dying. But I do not enjoy watching my loved ones carry this burden.
I am so grateful for the love and support of my family and friends. And I am also very grateful for all of you who read these words. You truly make a difference.
Now you are armed with a few facts about ALS! Go forth and spread the word. We need to DEFEAT ALS!
This blog was posted originally on May 1, 2014.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.