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.

Another thing that’s difficult with ALS: This disease makes people reach out in search of answers, and I don’t even like to imagine what it would’ve been like pre-internet. I guess people spent alot of time in the library. Or had to trust their doctors more. I currently have over 200 facebook friends with a direct connection to ALS. The point I’m trying so hard not to make…is the loss of friends…but there are two different types. The first is the loss of people who you always thought of as life-long friends, but they’ve stopped coming around, most likely because they don’t know what to say, or what they can do to help.

The second type is more obvious, friendships you’ve made because you had ALS in-common. The first PALS I was able to meet was here in my hometown. A few years older, went to a rival high school, star quarterback, a real “type A”, classy guy. When we met, I barely understood anything he said, and marveled when his then 5-year-old daughter translated for him when his wife was out of the room. I wasn’t showing any obvious symptoms at the time, but what a wake-up call. It’s been 2 or 3 years since Steve passed away; he chose not to vent. Then there was David, a long distance friend, navy vet, on a vent. He passed around the 10-year point, cancer of some sort. There was Mike from the support group…and Ann, Carl, and how many more have to live through this? A quick check of the patient profiles on patientslikeme reveals over 70 in NC with ALS, and over 4500 around the country. These numbers hardly represent the estimated 700 in NC, over 30,000  nationwide.

I’m so very thankful for the opportunity to make so many friends online dealing with the same thing I am…but the losses are so much more apparent.