Wednesday, 26 November 2014


There are so many "why's" with this disease, so many unanswered questions. It is perhaps the most frustrating part of ALS, that even with a hundred years of study and millions of dollars in research, there still remain so many blank spots in our knowledge.

"Why me?' This is not the plaintive howl of anguish, the wondering about what I did to get ALS as opposed to someone else. This question is the much more academic wondering about what it has been in my life, what it is about my genetic structure, what it is about my lifestyle, and why all of these things, or none of these things, met within me to bring on ALS. There are suggestions that multiple factors cause ALS, some of them perhaps reaching back years, and that it may take years for the disease to express itself even though it lies either latent or slowly growing within. What is it about me that brought these factors together? Nobody knows.

"Why now?" ALS has long been known to attack people in their 50's and 60's; it has not traditionally been thought to be a young person's disease except perhaps in familial ALS. Yet I see a great many people with this disease, particularly online, who are much younger than I am. Nobody seems to be able to tell us why this disease is moving from older to younger, or why it attacked me at 57 instead of 47 or even 67. Just as we don't know what the triggers are, neither do we know what it takes to conflate those triggers, young or old. Nobody knows.

"Why this slow? Why this fast?" I know of people with ALS who have lived for many years, famous folk like Steven Hawking and the not so famous, like a fellow in my support group who has been living with ALS for almost 15 years, his only real impact being his loss of ability to speak. It is moving, but slowly. Then there is the fellow I know who was diagnosed last December and died just the other day. Why was his so fast? Why is someone else so slow? Why I am "average"? Nobody knows.

"Why does it start in one place for some people and in other places for others?" Mine started in my legs, or rather in my feet. For others it starts in their hands. For others it starts in their neck and throat. For some, the truly cursed, it starts everywhere at once, showing no preference for how it kills. Why it starts in some places for some, and in other places for others, is simply a mystery. Nobody knows.

That's the real story of ALS, that there is so much unknown, so much that we need to learn. There is so much work to be done to answer so many more questions. We need to know. Why?

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