Monthly Archives: May 2016

I’m Not Done

May is ALS awareness month. I’m sure that anyone reading this post is more than aware of ALS at this point, but let’s keep talking about it anyway. Otherwise this might have to be a blog devoted to my love of tortilla chips. Happy Cinco de Mayo, by the way. And how about that Ted Cruz? No! Stop! This is an ALS blog. Puppies.

ALS TDI is running a campaign this month called #InThreeWords. They are asking people to come up with three words to explain how ALS makes them feel. I thought it was something that Scarlett and I would do together, but that didn’t work out as planned, and you can hear why by watching this 1-minute video I made to share my three words. It’s G rated. Read More>

Jazz Fest, but not really

I am overflowing with words and nothing can keep up with me. Definitely not my own mouth, not my dictation device, not my energy level, that last whittled down by a late-night arrival into San Francisco after a trip to New Orleans that feels almost like it was a dream.

It’s May. It’s ALS awareness month. That’s worth discussing for an entire blog post. But not today. Rob just got home from work. He said there are two huge boxes outside, and then brought them in. Wedges for my bed, sent by Team Gleason when I was clearly envious of Steve’s. A kind gift on top of a weekend of kindness.

For anyone who’s not familiar with Team Gleason or Steve Gleason, the quick story is that Steve was a safety with the New Orleans Saints, and was diagnosed with ALS in 2011. Since that time, he and his organization have worked to make life easier for other people with ALS. Steve focuses on technology, and on being proactive in the face of the disease. Through the Adventures side of his team, people with ALS have been invited to experience the kinds of things they might have assumed were beyond them post-diagnosis.

That’s where we come in Read More>