My View of ALS

All of us in the ALS community are coping with an enormously varied disease. No two cases fall in the same etiology, starting point, sequencing or stages, or rate of progression. The end result seems to be overwhelmingly uniform, i.e., a one way ticket to the happy hunting grounds. There is no cure. The many professionals we consult with can do little more than deal with symptoms that arrive as the disease relentlessly progresses and provide palliative care. What matters most, therefore, is the process of moving through this strange disease. There are lots of disguised “ blessings” stemming from ALS that make this disease unique. We generally retain all of our senses and our mental acuity, which means that our ability to experience the outside world is much more viable compared to those suffering from many other terminal diseases. We have time to put our affairs in order, repair damaged relationships and enjoy long goodbyes to loved ones and friends. We can still enjoy great literature, beautiful music, good food (at least for a while), and conversation. We can, with the assistance of amazing technologies, move about, use our computers, and enjoy relationships with loved ones and friends. The downside of these “blessings” is that we get to witness and experience in full technicolor and 3-D the gradual disintegration of all activities related to our voluntary motions. At some point, many of us will end up “locked in” and totally unable to communicate with the world.