WTF

"I think we're dealing with ALS."


My neurologist's words hit me like a roundhouse kick to the face.  Over the last few months I've seen three different neurologists for the strange, and still subtle symptoms I've been experiencing.  I've been stuck with needles, shocked, poked, and prodded.  I was sitting in an exam room in the Forbes Norris ALS Research and Treatment Center and I had just seen what happened when the doctor tested my patellar reflex.  In retrospect, my reaction should have been more like Michael's:



Amyotropic lateral sclerosis (ALS), is an incurable, and inevitably fatal, disease of the body's motor neurons.  It was first identified (diagnosed) almost 150 years ago, and it's mechanics remain a mystery to medical science.  Its cause is unknown, the mechanism in which motor neurons are killed is unknown, and its cure is unknown.  It strikes virtually at random, though is most common in people over 40.  The only treatment is a drug, Rilutek, which twenty years ago was discovered to slow the disease progression down by about 10%.  It remains the only medically recognized treatment for the disease.   The disease is progressive meaning it will spread through my body,  each part gradually growing weaker until, ultimately becoming completely paralyzed.  Hands, arms, legs, face, torso, everything, one at a time.  A progression to zero.  Mercifully (or not, depending on your point of view) your mind remains unaffected in most cases.  Eventually I won't be able to eat or breath without medical intervention.

My first sign something was wrong came over a year ago.  I started getting strange "twitches" (fasciculations are what doctors call them) in my upper body.  On googleing this, ALS came up, but it rarely is a first symptom of ALS (6% or so of cases), and lacking any other symptoms I figured the twitches were benign. In December I started slurring my speech and I went to the doctor.  With no know cause or mechanism, ALS is a clinical diagnosis, meaning you look for signs and patterns rather than diagnostic tests to determine if you have the disease.  As each test they did on me came back normal, ALS grew more and more likely.  I've never wanted to see an abnormal blood test before.

Currently my symptoms are mild, a bit of a speech impediment, a tendency to tire easily, some weakness in my right hand.  I still twitch all the time and I have a tendency to laugh, or cry too easily.  Its very early on, and the progression seems slow so far.  The disease is highly variable in it's progression, no two people go through it in the same was, and it can speed up or slow down at any time.  I don't feel sick, I don't look sick. I wonder if the doctor got it wrong, then I try to talk, or I have trouble getting something out of my pocket, or I slip on the stairs.  I worry that all this is going to affect those around me, that it's going to be harder on them than it is on me.  Stephanie and the boys the ones who will have to pick up the slack when I can't, and take care of me as I loose the ability to take care of myself.  Luckily we've got great family and friends, who are supporting us in whatever way they can and that means a lot.  Having good people in your life makes everything easier.

My current intention is to write about my experiences here, so subscribe to the feed if you'd like to.  I don't know how consistent I'll be,  I'm playing this whole thing by ear.