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.

Day 3

As my disease began in my right hand, it was first noticed as a slight weakness, difficulty turning keys, or pressing the transmit button on my portable work radio. As I began to pay more attention to my weakening hand, I began to notice the twitching of the muscle in the web between the thumb and forefinger. It wasn’t long before the twitching had spread throughout the hand, wrist and the rest of the arm.Before long, I had difficulty holding my salute for the duration of the anthem at retreat. This eventually led to difficulty typing, later making my left hand dominant, relieving the right to become useless.

While the loss of functional use of one hand/arm can be overcome, the weakening of the legs is another matter, a major lifestyle alteration. With some, it starts as tripping, usually with a foot-drop. With me, it was very subtle; just enough weakness in the leg muscles to make me topple like a mighty oak if I lost my balance the slightest bit to the rear. I’ve lost count of the number of times I’ve fallen, in the house, the shower, out front, back, in the garden center at Wal-mart, on the beach in Jamaica. Each time escaping serious injury, lucky. My worries about falling are all but gone now, only arising during transfers to and from my chair.

I am one of about 30,000 in the US with ALS. 3,600 of us are newly diagnosed each year(15 every day), and 3,600 of us die. About 90-95% of us have no genetic link, or ALS in our family history, the other 5-10% do, normally affecting many generations. Although Lou Gehrig’s disease knows no racial or socio-economic bounds, I am caucasian(93%). My military service makes me twice as likely to have ALS. As a 55-years-young man, I’m more likely to have ALS(60%) than my wife, but that will level-off as we age. About half of us will be gone in three years or less. 20% will live five years or more, 10% ten years or more.