ALS Bytes

During my first tour in Germany, my favorite barber on the base had a very distinctive, accented way of answering the phone, located just beside his chair, “Barber shop, Edmund speaking”. Only it was more like “Bobbashop, Edmund speakINK”, with all the aplomb of “Schultz” of the old Hogans Heroes TV show, back when we turned a round knob to change channels. What does this have to do with ALS and why it bytes? Absolutely nothing! For me though, it’s kind of the thought process I just went through to highlight a newly-added link to Edmund’s Top 10 Tips To Consider When Shopping for Mobility Conversion Upgrades for 2010 to the links page. Now, maybe I won’t be the only one making that weird-association.

A lot has happened this past month or so. We loaded up the van for a 4-night stay in the Outer Banks on Hatteras Island. Being from the Southeastern part of North Carolina, I’d never made the journey there before, and as much as I hate the term, it was prevalent on my…’list’. The closest beach from home is probably about two and a half hours drive. The OBX is another story, with the choice of a long drive-around, or a 2+ hour ferry ride. Once we got the van loaded with the girls, Pepper, Cindy and her trusty road atlas, then me and all my medi-phanalia, I don’t think there was room for another roll of toilet paper! One thing I was very excited about on this first leg was the opportunity to meet Jill. She and I share an ALS diagnosis, which is how we became email friends a couple years back. I’ve always envied her transparency in her writings, and her faith. Anyway, the trip became an opportunity for us to finally meet, for which I’m extremely greatful! Love you Jill! The rest of the trip was nice, except for waiting 2+ hours for the Ocracoke ferry.

Yesterday I received my new power chair, a Permobile C500. Largely the same as the old Chairman Entra, but the updated electronics, controllers etc. make a huge difference, especially with the foot-controlled drive. This one has a gyroscope for enhanced steering accuracy on uneven ground, and also actually has shocks, whoohoo! Oh, and I can program the tv remotes into the chair display for hands-free channel-surfing, gotta love that!

Tomorrow, we’re off to a much anticipated, and maligned, appointment with the pulmonogist at Duke. Has everything to do with my possibly going on a ventilator in the maybe near future. Looking forward to getting this one over with, just as much as I looked forward to my recent colonoscopy appointment, which I canceled. Wish me luck, and if prayer is your thing, I’d appreciate it!

**NOTE: Back home now, and just wanted to say our prayers were answered with the pulmonology appointment. My FVC actually increased three points from a year ago!