Thursday, March 27, 2014


About two months ago our friend, Ben Freakley, got in touch to say that he would be running the Atlanta marathon to benefit our family.

He completed the marathon (in pretty good time) this past weekend.

Ben's wife, Melissa, kept us all up to date on Ben's progress via Facebook. She also posted some great pictures from the finish line.

Given that this was the first time Ben had even attempted a marathon, I can't get over how easy he made it look. I'm almost certain if Ben were sitting with me now, he might confide exactly how hard it was to run that distance. Then again, maybe he's so sore he cant even sit down!

Amanda and I are so blown away by acts of support like this that we run out of appropriate superlatives.

Perhaps it's just best to say a simple thank you, and to just let you know that your support makes us feel truly fortunate.

Sunday, March 23, 2014

Long Day Out

Yesterday I ended up being out of the house for a fairly long time, but it was worth it.
Chuck Steenburgh | VMI

Amanda and I went to  watch the VMI basketball team play, and then caught a Jujitsu tournament.

We took in the VMI vs. IPFW game. VMI is playing in the  College Insider Tournament. It was a great game, and we were fortunate to have great seats down on the floor. VMI won an entertaining game.

We immediately headed up to another building on post. On the top level of Cocke Hall, Jim Whitten and the VMI Jujitsu Club were hosting a tournament to benefit our family. Quite a few people came up and expressed their well wishes and gratitude for being able to compete. 

I'm not sure how to react when people thank me for helping me. I suppose for a brief moment, ALS takes a back seat and I get to share some time with some genuine, good people.

Sunday, March 9, 2014

My Belly

It's been a week since I had my feeding tube put in. Our first night home, I found it very uncomfortable and barely slept. I spent the next two nights in my recliner where elevating my body provided some relief.

I've spent the nights since then back in bed. My levels of pain and discomfort have subsided dramatically.

We've had home visits from a nurse, and discovered minor signs of infection around the tube.

My diet is a bit scattered at the moment. What was routine before the procedure is now less so. We've been eager to use the tube but I feel we've yet to fully integrate it and my regular diet into a new routine.

I returned from Baltimore feeling fairly energetic, but I've spent most of the past five days asleep. I know I have to listen to my body, but I do wish it would play a more energetic tune.

Amanda has taken to the new process very well. Gurgling noises, the rush of escaping air, and the occasional splash of fluid from my digestive system has done nothing to dissuade her from the job. She's also quickly figured out how to give me my daily meds via the tube, which gives me one less annoying thing to get stuck at the back of my throat.

The girls are aware of my new hardware. Both have been keen to look at it. Cora was keen to help feed me a milkshake but that enthusiasm seems to have subsided. I don't know if she has forgotten, has simply accepted my new hardware, or been distracted by everyday life.