What do you think about when you hear about families with ALS? Bucket list adventures? Advocacy? Awareness? Fundraisers?

Want to add something to those thoughts? How about this picture…

It is 5:00 am. I’ve been up since 3:30 am. Why? Well around 3:30, the Big He called out to me that he needed suctioning. I went from sleeping to suctioning to doing a cough assist all within 2 mins. After he was able to breathe better, he closed his eyes and drifted back to sleep…sort of. He sleeps very light these days. Me…well I cleaned the equipment, took off my gloves, washed my hands and headed back to bed…but didn’t drift back to sleep. I’ve suctioned him three more times. So, now its 5 in the morning and I am watching him sleep..sort of and thinking if this is what people not living an ALS life think about when they think about ALS.

Something else…do you notice the distance to the Big He? I now sleep in a twin bed about 3 feet from his hospital bed. We’ve been married 29+ years. Do you think about this?

Have you thought about the fact that I’ve been up since 3:30 and soon the day will get going. I will be caring for the Big He all day. This is not a once in awhile thing….this is like an every day thing. Little sleep. No days off.

Am I complaining…nope. Just trying to provide you with something more to think about when you think about ALS. pALS and cALS don’t think about this, we live it. Daily.

If more doctors, researchers and elected officials lived this ALS life, would there be a management or cure for this disease? That’s something I think about.

Until next time.

All my love, The She