Unless you've been under a rock for the last few weeks, you've heard about the ALS Ice Bucket Challenge.
One of the main criticisms I've heard about the challenge is that people are participating in the challenge - perhaps even donating - but not learning anything about the cause. So I'm here to fix that. Here is what you need to know about ALS:
ALS stands for Amyotrophic Lateral Sclerosis, also known as Lou Gherig's Disease. It is a neurodegenerative disease that affects the motor neurons. In human speak, it is a disease that weakens the muscles in the body, and it does not get better.
There is no cure for ALS. People generally live between two and five years after onset of the disease - though rarely, people may live longer, like Stephen Hawking.
ALS is not contageous, and it typically does not run in families. (ALS that runs in families makes up 2% of all cases)
One of the most common symptoms of ALS is a progressive weakness in one or more limbs. About 25% of cases are "bulbar onset" ALS, where symptoms include difficulty speaking (including slurred speech), or swallowing.
While there is no 'easy' way to die, having watched my grandma go through this, I believe that ALS is one of the absolute worst diseases. In almost all cases, your mind remains in tact while your body slowly stops working. One day you can't swallow your food as well. Then your speech is too slurred to be understood. Since you can no longer chew, you have to receive nutrition other ways. Things start to slip from your hands, and your sluggish feet trip over the edges of carpet.
Eventually, you'll be bedridden because your muscles can no longer support you to stand. As your hand dexterity goes, you won't be able to communicate by paper or keyboard, either. Then, the muscles in your respiratory system will be weakened, and you'll need to be hooked up to a ventilator.
You are stuck as a prisoner in your body as it deteriorates, and there is nothing you can do to stop it.
As difficult as it is to watch, I cannot imagine what it's like to live it. I would not wish ALS on the worst person in the world.
I think everyone has their own 'pet causes' at different points in life. Some of us deeply care about diabetes research, clean water, human trafficking, or animal welfare. The hope of people not having to die from ALS is one the causes closest to my heart.
If you can, and would like to make a donation to the ALS Association, here is a handy link to do so, here.
Now, whether you feel compelled to dump a bucket of ice water on your head or not, you know what the cause behind the ice bucket challenge is all about. Please spread the information on to anyone you might think needs it.