Life and Love with ALS

I was out on the ALS Forum tonight and in a single thread I noticed something.There were four people in that thread who had been diagnosed on or after 3/1/16 (or their spouse had been diagnosed) and they had all had much faster progressions of their ALS than Brian. One woman was using a hoyer lift, just started this week. One man had not been to bed for months, sleeps in a recliner because it freaks him out he can't get out of the bed. Another woman, her husband diagnosed in April of 2016 is already a widow. Brian drives still, goes to pool exercises on his own, goes to adaptive yoga, does things around the house. He walks with a cane and wears his leg braces and there are of course the long slow changes. The man who made my breakfast every morning and ran around like a squirrel all day, lifting and fixing and painting and obsessing on the yard is no more. It's just not possible, that old level of activity and that strength and coordination. I opened a pill bottle the other...

Well happy Superbowl weekend! Even if you hate football, it's still "Superbowl Weekend" because you have to actively avoid it to escape :) As mosr know, we don't hate football and will be tuned in from home. We thought about going out, but that gets late and crowded when you have an 8:30 meeting as I do Monday. This brings me to my subject line, what I do all day and what I have done. What Brian does all day and what he has done. Who we ARE right now in this moment. We sure are not a disease. It can seem like you are from the moment of a serious diagnosis, particularly the really scary monsters like like stage cancers, life threatening cardiac issues, and of course all of the serious neurological conditions - ALS being the king of all monsters still in 2017. Brian worked for the Municipal Building Commission for 31 of his working years. He was in various roles. Maintenance, Security, and so on. In real life time, he worked for Minneapolis City Hall in a division...