Tongue Cramps

I had a great day yesterday, wandering down memory lane. Unfortunately I had a tough night last night. As odd as it sounds, I was getting muscle cramps in my tongue. They hurt like hell. Add that to my loss of fine motor control over the left side of my mouth, whereupon I find myself biting the inside of my left cheek while I sleep, and this kind of stuff makes for a rough sleep.

This whole bulbar thing, the loss of muscle control over my mouth and throat, has been coming on for some time. I noticed the first indications almost two years ago, with a slight lost of control over the formation of certain words. About a year ago, I began to notice the "throat clearing", which, in ALS, suggests a loss of muscle control with the swallowing and throat muscles. I started "choking" on food more often. My daughter told me to be more careful when I eat.

At that time, I also noticed a more of a challenge with word formation. It wasn't much. In fact my daughter dismissed it saying "Dad, you've always had that problem, and that whole dramatic pause thing." That's a part of the problem with ALS. That whole "dramatic pause" thing, the word formation issue, could easily be seen as a normal part of speech. I just noticed a subtle difference in the way it happened.

Then I began to slur just the tiniest bit. I cover it up well; my diction has always been excellent. Once again, I am starting at a higher level of muscle control, so the loss looks like "normal" speech. It's not. Some letter combinations were harder than others, some words less likely to come out on the first attempt. I also noticed that the left side of my mouth constantly felt like it was "sloping", as if I had had a stroke. It's not really visible; it just feels that way. You can't see it; I can feel it.

Finally, of late, the truly obvious stuff is coming along. You can see when I chew on my cheek or bite my tongue while eating. It's visible. You will probably begin to notice that I am not as clear in my speech as I once was. It's visible. You might even notice me grimace in pain as the muscles in my tongue cramp up. It's visible.

I slowly losing my speech. It will happen. One day I will be unintelligible, slurring my words, struggling with word formation. It will happen slowly, the changes almost invisible, except to me. Then one day you will ask me to repeat myself; you will not have understood what I was saying. Then, one day further along, you will begin to interpret what I say, seeking the words in the midst of the slurring. Then, one day, I will just stop talking altogether. Make your jokes now; it will be far too painful then.