Amyotrophic lateral sclerosis— that lengthy, almost unintelligible descriptive medical term which most of us translate as ALS— is a nasty, debilitating disease.
ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size. It may begin with weakness in the arms or legs, or with difficulty speaking or swallowing. About half of the people affected develop at least mild difficulties with thinking and behavior and most people experience pain. Most eventually lose the ability to walk, use their hands, speak, swallow, and breathe.
As miserable as that list appears, the one that gets most ALS victims is the one that arrives last. The inability to breathe. Most people with ALS die of respiratory failure. They cannot breathe.
A very small percentage of those diagnosed with ALS have what is called respiratory onset whereby most symptoms are confined to core muscles, diaphragm, intercostal muscles; those used to breathe.
My version of ALS is considered to be respiratory onset.
While those with ALS have a life expectancy of 3 to 5 years after diagnosis, and many live beyond a decade, those with respiratory onset are rare; they have less than two years. The verdict is in.
My two years are up.