Amyotrophic Lateral Sclerosis, known in the UK as Motor Neurone Disease (MND), or here in the States as Lou Gehrig’s disease, is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. It happens quickly, out of nowhere, and there’s currently NOTHING you can do about it but wait to die. The only treatment available to date is a drug called Riluzole, which has a minuscule chance of giving a person with ALS a sliver more of life, maybe 6 months. Or it might destroy your liver.
ALS is a horrible thing to happen to anyone. It comes out of the blue, swiftly leaves you trapped in a shell that was once your body, and has no mercy. If you have ALS, you WILL die. Probably soon.
The first thing I always do when anyone tells me something like this has happened is research the living shit out of it. The more I know about it, the less…out of control? the situation feels. Knowledge is power. Power is control. Or something. So here’s some places for you to start:
For Your All Purpose ALS needs: The ALS Association.
Trying to improve the lives of ALS sufferers through technology: No White Flags .
Wiki that Shit: Instant Expertise!
If we’re gonna beat this, we need all the information we can get: The ALS Registry.
If you want to get a hold of me, then feel free to leave a comment. Or you can email me at alsfts @ gifhy . com though I reserve the right to put your email up on this blog for all to see if you’re just going to be mean to me.