Life and Love with ALS

I have been down in the dumps lately. Brian has small progressions. Nor big ones, but about what you would expect. His left hand is not much on the fine motor abilities. Meaning he can still grab a cup of coffee with it, but typing not so much  with the left hand. His legs need the orthodics to be moving any great distance. Considering the left hand issue showed up mid-June and the left leg in February, this is pretty typical stuff. Slowish actually as progression goes, so no cause to think he will cease walking or using his hand/s anytime soon. We will do a cane outside for safety when the snow comes, it just makes sense. Or anywhere else a cane is needed for that matter. Brian has been down sometimes too. How could he not be? The mornings are hardest. The Rilutek morning dose makes him sick to his stomach, and his energy level is so low at that time too (and also later at night). There is no getting around the fact that the guy who was building decks and sheds one year ago is...

Last Sunday we went to the Vikings game. That was pretty cool and also a little emotional. Brian's dad was a huge football fan who had season tickets all the time. Brian, his dad and his brother were all always big Vikings fans. Brian talked about going to the old Met Stadium for the first time as a kid and here he was in this big beautiful new shiny thing. Yes, I laughed they sure gave us one hellava stadium for all those tax dollars spent. I loved it too though, the place is amazing, the game was a Vikings mega victory, the fans were so much fun too. Brian said something, just one thing that day that reminded me of our situation: "I am glad I lived to see this". I teared up a little but quickly sucked it back up. I can't "hang the crepe" now. Stay in the moment, it's the only place any of us really live. Besides, we don't know if we will be seeing games for years to come, or not. We truly do not know that and never did. You can't fight much ab...

This post is generally selfish and all about me.  The time before... I don't think about it much, usually. It really does not help in keeping a positive attitude. This photo is the last one taken of me before Brian's symptoms entered our lives for real. We were coming home from CommonBonds Grand Gala, the annual fundraising event held each April. We did a hotel overnight at the Hilton. It was a fabulous night. Perfect, in fact. That little limp, his leg complaint that night? Well, he had tripped on stairs in February and was not 100% after that. Brian always bounced back, but this was taking awhile. Still, he was not getting any younger and that could happen. The first evening home from that great night was when he would show me that he could not lift his left foot up fully. Drop foot. But, but, but it's just an injury, right? Off to the Doctor he finally went, and so it began in earnest. This is not a great picture of me, but looking at it I can see the diff...