The duality of ALS…

My legs can still support me but not for long, and although I can move them still, they betray me with spasms, cramps and twitches. Now the accessory muscles supporting my right knee are weakening to the point of giving out on me. Making me fearful of walking.

My hands cant hold on to things, a tissue is a workout, I can do two reps and I’m done. When I am able to grasp something my hands won’t let go. I’m screaming at them internally, but they wont budge. My thumbs are the most obstinate, damn thumbs!

My tongue of late cramps! Yeah you heard that right, my tongue, what the hell! This puts a new perspective on the phrase “tongue tied”. Not good for someone who has allot to say… just saying.

My mind is in tact, thank God, at least I think it is? Yet my thoughts often wander to dark places, making me question my existence and the point of trying. I allow myself to meander through this forest of despair, knowing that I can navigate out by focusing on my family. It’s ok to wander, just stay tethered to hope.

Just a few of the oxymoronic aspects of ALS.

Oh yeah, one last thing, I hate ALS, but I love the people it has brought into my life.

The Juan and Only

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