When the Cards Aren't Fair, Change the Game.
Let's have some fun today shall we? Of course we should! All of us NEED to laugh a few times during our waking hours, and so I present to you, loyal reader, things that people have said to me over the course of my life as I have ventured out in public with a manual … Continue reading SO I’VE HEARD…
Before writing I thought a lot about how I would like to present what I'm about to say. My brain hovered between scientific information, layman's terms and comparisons between Duchenne MD and the type that I live with. (Limb-Girdle 2e). Well, what the hell, let's do a bit of everything for those of you who … Continue reading WORLD DUCHENNE AWARENESS DAY
That knocking at my door is opportunity and change. One of my favorite musical/lyricist is the late great Neil Peart of the band Rush. His words inspire me, and right now what's playing in my brain are lyrics from their song Tom Sawyer: "Changes aren't permanent, but change is." Some changes are insignificant (toothpaste brand? … Continue reading KNOCK, KNOCK
noun A person who is admired or idealized for courage, outstanding achievements, or noble qualities.NORTH AMERICAN: Another term for submarine sandwich. I'm the second one. Really. In my head I'm a sandwich. A bunch of shit thrown together with a condiment or two, held together by squishy matter like bread. Cold cuts such as turkey and … Continue reading HERO STATUS
From 1972-1984, my life was normal. Well, looking back now, there were signs, but I never noticed nor would I have acknowledged them. As a kid, no one wants to be different and when you realize that you are, due to a physical problem, even at age 11, you start to question the whole world. … Continue reading THE JOURNEY
Just the facts for you: There are 42 types of MD. Mine is called Limb-Girdle type 2e. The 2 refers to the fact that I have a recessive gene defect, and the "e" simply means it was the 5th type of gene mutation discovered and catalogued. Limb-Girdle (LGMD) is one of the milder forms of … Continue reading muscular dystrophy 101
Thanks for coming back loyal reader, or bored person scrolling through your phone. When we last left our hero, he was sitting just outside the plane but inside the jetway waiting to be transferred to the aisle chair. You will recall that the aisle chair is a skinny, seat as hard as NH granite, straight … Continue reading air part iii – take off ‘eh?
Welcome back. I am now on my way to the airplane gate. I try to be about an hour early since that's when the gate agents open and I can speak with them. They need to (1) ask a bunch of questions regarding my power chair. (2) tag the chair (3) alert the ramp crew … Continue reading air part 2: Hannibal Lector
Many of you know that have been traveling around the U.S. and the world for years presenting at disability conferences. Like everything else, this was on pause during the worst of Covid. Recently, my wife and I weighed the risks and decided it was safe enough to fly from Boston (near home) to Phoenix, Arizona … Continue reading air
In my grade 7 music classes each year, I teach a unit that covers Pioneers of American Rock-n-Roll. You cannot listen to and dissect the popular music of the 1950's without talking about Chuck Berry and his 1958 single "Johnny B. Goode." As many times as I have heard the song, it only came to … Continue reading Life in rock lyrics
Moeschen! 