I tend to get similar reactions when I tell people my mom has ALS. It’s usually something along the lines of, “I’m so sorry, she’ll be okay though, right?” One time, in a poor attempt to point out the positive, a girl said to me, “at least it’s not cancer!” The sad truth is that while most people have heard of ALS (more commonly known as Lou Gherig’s disease) a lot of people don’t know what exactly it means for the person diagnosed and their families.
In our brains and spinal cords, we have neurons that relay the message from our head to our muscles, telling them when to move. In an ALS patient, these neurons deteriorate and die. Without the brain telling them to move, the muscles lose the ability to function. As the disease progresses, the patients lose the ability to walk, pick things up, talk, swallow and eventually, to breathe without assistance.
The life expectancy for a person with ALS is two to five years.
ALS can strike anyone – there are no racial, ethnic or socioeconomic boundaries.
There is currently no known cause for the disease, and there is no cure.
There is only one approved medicine that only modestly slows progression by a few months.
There is hope for future generations. There have been recent discoveries that have doctors and scientists on the cusp of figuring out the cause of ALS, which makes them one step closer to finding a cure.
There are a lot of people fighting to create a world without ALS, and you can be one of them.
Join a walk (2012 walk dates will be announced on February 1st!).
Spread the word.
You can read more about ALS and what you can do to help here.
And you can read about my family’s journey with ALS, here.