Up to now I have not said a lot about how ALS is affecting me physically and my life in general. I have done so on purpose. The reason boils down to six little words. I do not want people's pity. And that in and of itself is the paradox. In order to let people know about what I am going through, a certain amount of pity is generated. Well here goes nothing and hoping that you might understand a little bit more.
The first thing that I noticed was a certain slurring of my speech and becoming overly emotional at things like TV shows. The slurring has now progressed to where, at times now, even my wife, who is with me every day, may not understand what I say. Forget about using a telephone unless I am texting. I sound like a gravel pit being turned over in a metal drum. Add that to a poor connection and you have either a comedy of misunderstandings or a frustration that just adds to the speech becoming worse. I have learned how to handle the extreme emotions a little better. At least I don't cry at leaves falling on the ground. Anymore.
I have good days and bad days with swallowing and drinking. Yesterday was one such bad day. I got choked enough that I needed help. Other days are better. I cannot say good because that would imply that I have no problems with anything. That simply is not true. I have my problems but have devised work arounds to deal with the situation. On bad days I want nothing to do with being in public. I am basically very shy and reclusive in my nature and always have been, but lets face it, a grown man choking on a drink and not being able to breath for a little while does tend to draw a certain amount of attention.
Most of the problems that I have are centered, for now, in my neck and throat. Besides the difficulty in swallowing I have muscle spasms/cramps in the small muscles in my neck and under my tongue. These can be triggered simply by yawning or taking a sip of a drink. If you have ever had a calf cramp up, what we in the South refer to as a Charlie Horse, you can imagine then the intensity of the pain that I feel for several seconds to a minute in my neck.
I have also noticed that I have a tendency to tire easily. Not from doing anything physically demanding but just a general lackadaisical tiredness and acheness. It is a good thing that I like to read for that is what helps me get through those days like that.
This is not an exhaustive list of what is going on with me and I am not for sure that I could ever cover everything in a blog. If I could I am not sure that I should. I don't want to dwell on the maudlin and depressing. I choose to focus on the good things and fun times that I can still have. Yes, you will see, from time to time, my humor and wit. For it is not in my nature any more to let things depress me for too long nor to allow those around me to not smile and laugh. For that is how I want to be remembered, with a smile and a chuckle and maybe, just maybe, a good old fashioned belly laugh that goes on for so long that tears of joy are shed and love is felt.
Until next time..........................
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