If you’ve been following along with my journey, you might already have a pretty good sense of what ALS is and what it can do to the body. But realistically, a brief description and a quick snippet of my grandmother’s story doesn’t paint the whole picture. To really understand the disease, you need to learn how and why it attacks the body so viciously.
Alright, here we go…
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language: “A” means no, “myo” refers to muscle, and “trophic” means nourishment – “No muscle nourishment.” When a muscle has no nourishment, it wastes away and deteriorates. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.
Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS causes them to die, losing all ability of the brain to initiate and control muscle movement. Because of this, people may lose the ability to speak, eat, move and breathe.
But I don’t think the total paralysis is the worst part of this disease. I think the realization that “this is happening and there’s nothing I can do about it” is the real downfall. Even though their body is going through an extremely traumatic experience, they are still completely cognizant of everything going on. Their mind isn’t affected as much as the muscles, so they essentially become prisoners in their own body – unable to move, communicate, or even show emotion.
When patients are diagnosed with ALS, it’s basically a death sentence. With no known cure, the disease is currently 100% fatal and gives patients roughly 2-5 years to live after diagnosis. The quality of those years is determined by how fast the disease is progressing in their body and if they have a strong will to carry on.
Here’s an infographic that explains a little bit more about everything I said above:Source: http://www.alsa.org/
Although ALS was first found in 1869 by French neurologist Jean-Martin Charcot, it wasn’t until 1939 that Lou Gehrig brought national and international attention to the disease, which is why it’s still closely associated with his name.
Awareness has come a long way since 1939 with the help of advocates, local events sponsored by Chapters across the country (Walk to Defeat ALS, Ride to Defeat ALS, Team Challenge ALS, etc.) and most importantly, the viral phenomenon of 2014, the Ice Bucket Challenge. All money raised by these events help support patients and their families battling with the disease, and fund research projects to find a cure.
I can write about ALS all day with the amount of scientific research that’s been done, the advancements in technology and equipment, the major policy updates that have been made in recent years… the list goes on and on. I think it would be more meaningful to talk about the people behind the disease.
I’ve been telling my marathon story for the past few weeks, but now I’m also going to start telling the stories of individual ALS patients. Their incredible sense of determination and powerful outlook on life will be serving as my “mile motivations” throughout training and on race day. Like I’ve said from the start, I’m doing all of this for them.
Featured Image: Facebook | Walk to Defeat ALS, Massachusetts Chapter
Check out my Crowdrise page to donate to my campaign & support the ALS Association: http://bit.ly/BostonBeginnings262
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