ALS Bytes

For the month of May, ALS Awareness month, I’m doing my best to chronicle what it’s like to have, live with or care for someone with ALS. Although many of the difficulties, thoughts and complications addressed here are based on my personal experience, I’m including the experiences of other PALS (People with ALS) I’ve known personally, online or otherwise, for a more accurate portrayal of the typical PALS. While this is not necessarily my story of life with ALS, it could be yours, in the blink of an eye…or, the twitch of a muscle.

One of the many difficulties of living with ALS is the fatigue. I’m currently napping an average of about 1-1/2 hours a day, and it isn’t by choice. If I don’t rest every 6 or 8 hours, the “pseudo-bulbar” affect kicks in….but that’s another story altogether, trust me.  Strangers who’ve seen me in this condition must’ve thought, “Now somewhere, there’s a village…”. Crass? Maybe, but you try living like this without a sense of humor! Otherwise, fatigue makes me yawn constantly when my diaphragm is tired, not doing it’s job of sufficiently breathing for me. My mouse arm gets tired, as I have to push the cursor around the screen, chasing the letters to type with Dasher. When my only functional hand gets fatigued, the “mouse-click” muscles start twitching, which makes doing much of anything on the computer almost impossible. Imagine being so fatigued you can’t stand it, but you don’t want to recline in your chair, on the couch, or anywhere else because you’ll have to use your bipap to breathe because of your weak diaphragm…which is extremely difficult for me to talk while wearing. Now you know why I’m always saying “One day at a time”…