Just last month, I was officially diagnosed with ALS, or Amyotrophic Lateral Sclerosis, or Lou Gherig's disease. Have I absorbed what that truly means? Yes. No. Do I feel different? Completely. Not at all. Do I know what is in store? Intellectually, pretty much. Emotionally, no way.
ALS is a motor neuron disease that effects voluntary motion nerves, which in turn causes weakness, wasting and eventual loss of function in voluntary muscles. It is progressive, deteriorative, incurable and fatal. Given those cheerful basics, it is highly variable, progressing quickly in some people, slowly in others, localized in some, body-wide in others. Average lifespan is two to five years after diagnosis -- but that is an average.
More detailed medical and scientific information can be found on ALS websites (check http://www.alsa.org/; http://www.lougehrig.com/; or http://www.als-mda.org/disease/als.html for more details than I can begin to offer). This blog is not meant to be that sort of informational clearinghouse For one thing, I am no expert. For another, I am not neutral enough to present unbiased, unemotional lists of facts. I can only present my own view of what it's like to be right smack dab in the middle of all this.
I can't say I am a "patient," because so far my physical life is maintaining at a fairly normal level. I can't say I am a "victim" of ALS because so far I refuse to be a victim of anything. The title of this blog really says it: I will keep running until I am tackled. Then I will run some more. And some more.
And I can't say that this blog is a primer on how to cope with ALS. My responses, physical and emotional, to the disease are and will be my own. Sharing them here may, just may, help others with ALS. It will, I know, help me.
More coming soon....
