Before I was formally diagnosed with ALS, I remember thinking that it couldn’t be that. The cases I’d heard about all progressed so quickly. Whatever I had was moving so slowly.
Of course, as we soon learned, ALS can move very fast. Or very slowly. And everything in between. Each case is unique.
Why are some patients gone sometimes only a few months after the first noticeable symptoms while others linger 10, 15, 20 years or more?
We have known since my diagnosis — in the Fall of 2012 — that mine is a somewhat slow progression. That’s one of the reasons it was so hard to diagnose.
So ... is slow good? Just wondering, here. In a way, I guess so. We had a chance to plan ahead some for my increasing disability. Of course, no sooner was one challenge met than another cropped up.
Slow progression also means a prolonged period of helplessness. Immobility. Total dependence. And the mental state that can accompany these.
So, perhaps in some ways, a quicker disease progression might be more merciful? I don’t know.
I’m glad it’s not up to me.
My slower progression has definitely given me a chance to begin to develop a more eternal perspective. To see more clearly what is important and what is not.
I have been forced to slow down, to set aside busy-ness. To think. And wonder. And pray.
And to trust.
Maybe others learn these lessons faster? They are ready sooner? Again ... I don’t know.
Maybe someday, when science solves the ALS mystery, we will know why the pace varies so much. If we know that, maybe we can stop the disease in its tracks.
In the meantime, my lessons continue.
Guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.
Blessings and love, Patty
This blog was posted originally on Oct. 23, 2014.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.