ALS Ice Bucket Challenge

Editor's Note:  In lieu of dumping freezing cold water over my head, I wanted to help to raise awareness of Amyotrophic Lateral Sclerosis AND Muscular Dystrophy.  This is taken from research via the MDA website and my own experiences.

In light of the recent popularity of ALS Ice Bucket Challenges, I thought to myself, “I can pour a bucket of ice water over my head or I can take some time to tell you about Amyotrophic Lateral Sclerosis.”  Its not that I’m opposed to the ALS Ice Bucket Challenge, but I’m wondering if people are really understanding how the disease affects those who suffer through it and why it is so important to raise awareness and funding to defeat it.

In much the same way Muscular Dystrophy affects the body ALS causes weakening and atrophy of the muscles.  The way it works is this:

The neurons or nerves that control the muscles are lost.  Your nervous system works like an electrical system to provide power to every section of muscle in your body.  There are millions of neurons, which are like the connection point between the muscle and the power supply. Electrical impulses come from your brain and travel through the nerves to the neurons and cause the muscles to work   When you have Amyotrophic Lateral Sclerosis the neurons begin to be lost.  They no longer function and the ability for the muscle to work is gradually lost.  The muscle is, in a sense, paralyzed in that one point.  Because it doesn’t receive the impulse it doesn’t work, and atrophies.  Atrophy is the wasting away of muscle.  The muscles lose function and waste away.

The symptoms of ALS usually onset in a person’s forties or fifties but can come on at any age.  In the beginning it is usually marked by weakness or spasticity (uncontrolled movement) of an arm or leg muscle.  It is easy to ignore the symptoms at this point.  Think about how many times you’ve felt weak or had a muscle twitch or jerk on it’s own.  It starts in one set of muscles and moves to the adjacent ones, until large areas of muscle are affected and can no longer be ignored. 

Most research done on ALS is done through the Muscular Dystrophy Association.  In some ways it is very similar to Muscular Dystrophy.   

So, I want to take one more moment and talk about Muscular Dystrophy.  A person suffering from Muscular Dystrophy (MD) has much the same problem.  There is a different reason for the weakening of the muscles but the outcome is similar.  MD also results in loss of muscle strength in the voluntary muscles.  The muscles for breathing and heartbeats aren’t affected.  But muscles become weak, atrophy and eventually become stiff and unusable. 

Here is where that becomes a problem.  The muscles that control your lungs continue to function properly, but the muscles that control coughs weaken and become stiff.  So if you are affected with a respiratory illness you can’t easily clear your lungs.  Most MD sufferers die from respiratory illnesses like pneumonia.  ALS and MD are not painful, directly, but as muscles weaken and become loose you tend to experience joint pain. (Stiff necks, sore shoulders, rib cage pain, etc.)

Currently, there is no treatment for ALS or MD.  There’s no medication that will stop the spread.  It is a long slow slide into weakness.  Because of that people suffer with depression, a feeling of a loss of usefulness or value.  Someone that is prone to depression can really be affected by the loss of strength.  I believe that depression can propel someone toward and early death from the diseases. 

I believe the way to help someone you know that is struggling with this is to assure them that they can lead a productive and “active” life for two decades or more.  I have lived with MD for 30 years now and I’m not close to death.  I’ve remained productive through preaching and writing and look forward with hope to more years, ahead.  There will be a need or adaptation and improvisation in an ALS or MD sufferer’s life.  But it can be managed and life can go on.

Donating to the MDA is a good way to insure that research continues and the disease can be eventually defeated. 

This has been written through research and my personal experiences with Limb-Girdle Muscular Dystrophy.