Tuesday, April 28, 2015
Sunday, April 26, 2015
At Disney world a few days ago. A man stops us and says, "Who is this Als?"
Not A L S but the plural of the name Al. Like the guy who owned the diner on Happy Days or everyone's favorite climate change guy Al Gore.
We were busy eating an elephant ear so we didn't really get it. Plus he was German so it came out a little spooky, as if we were being interrogated. Imagine Laurence Olivier in The Marathon Man: "is it safe?" became "who is Als?"
Actually, he was a pleasant looking man wearing a pretty cool cap so we weren't too concerned! We could've used the powdered sugar on our elephant ear as a distraction and run if it was remotely Marathon Man-like.
Sidebar: Put it on your list of movies to see if you haven't. I was going to post a clip of the infamous dentist drilling "is it safe" scene but found it too disturbing out of context. Still...see the movie Marathon Man if you can.
"Who is this Als?" He pointed to the sticker on the back of Luther's wheelchair.
It says ALS SUCKS in big letters. Under it is Let's find a cure for Lou Gehrigs disease.
I told him it's a disease and that's why Luther is in a wheelchair.
What is the disease? he asked. I said do you remember everyone who put the ice bucket water over their heads last year? Oh yes, yes, he remembered. He said he was sorry and glad to see Luther was having fun in Disney.
He laughed and said he thought Als was a politician and wanted to know why we didn't like him.
I'm thinking about getting a new sticker.
Sunday, April 19, 2015
Most important, we are heading home with a sense of connection. Of how special our time together is.
Sunday, April 12, 2015
I haven't posted much lately. Some of it is because being busy. Some of it because I have to actually form a thought and write something. Which would take effort.
I lie in bed at night and my brain zings around, filled with a zillion worries, thoughts, lists.
Morning comes, we sleep late, the sun eternally shines and worries, lists, and frankly any thoughts fly out of my brain.
This past three months has been a dream world. My biggest worry is what to make for dinner. I have had some scares with Luther... the fall when we first got here. His coughing issues.
Mostly though this has been the best. For his health. For us. For me.
Having the luxury of this time, of no worries, it's given me this open heart or maybe a lighter space to enjoy being with Luther, with my parents.
Luther and I have grown closer. I love him so much. We've become better friends. My heart aches for his frailty, for his future.
We leave for home in two weeks. Life starts back up! Decisions to be made. Lots of stuff to do.
This low key languid really warm life comes to an end soon. I'm excited in many ways to start the next chapter, to see friends again, to move. But I'm sad this excellent winter is coming to a close.
How lucky I am we've had this.
Thursday, April 2, 2015
Wednesday, April 1, 2015
Luther is sitting in his chair. He's been there for about 20 minutes. I'm blogging. This feels wrong.
I was staring at him, huddled over but that seemed wrong too.
I've played 100 questions with him but that was futile. The best thing is to leave him be.... I think.
He's coughing. His nose is super stuffed up so he can't breathe through his nose. The coughing is always an issue in ALS.
It's because the throat has muscles. ALS weakens and eventually paralyzes involuntary muscles. Right now, Luther doesn't swallow as much as you and me.
Spit (mucus) builds up on the back of his throat causing him to cough.
He'll cough a ton after eating. Doctors say it's because food gets trapped in wrong place.
Anyways, at night, when you lie down, all that spit mucussy (?) gunk builds up more and his nose gets really stuffed up.
Every night he wakes up and coughs a little. We got Benadryl and that seemed to help. But tonight, not so much.
It's really hard to sit here and do nothing. It sounds like he's choking. I'll rephrase. He is choking.
I gave him another Benadryl. It's been 10 minutes...it seems to be working.
This has been the longest cough/choke episode so far. I hate this.