Written on March 5, 2012 at 10:19 pm

To update this post I made last year, I am still not going back to SXSW… Again, not because it’s too big, too commercial or too social media focused (I’m sure it’s all of those things and a million other reasons you wouldn’t want to go if you are looking for excuses), but because I have an undetermined muscular disease and can’t walk the distances I would need to make it past day one.

I normally don’t post personal stuff on this blog (and in the last year, I haven’t really blogged here at all), but here’s the story with this, since I have been asked these questions a lot:

About twelve years ago I started getting tics / twitches in my right leg. They spread to my hands and the rest of my body and then I started getting charley-horse cramps everywhere, especially when I was tired, over-caffeineted or stressed (so if you know me, basically always). Up until 18 months ago these were bothersome and annoying, but that was it, and the doctors thought they were benign – literally something called Benign Fasciculation Syndrome.

In September of 2010 they started getting worse and over a couple month period it got so bad I was frequently walking with a cane for support. Due to some improved medication and diet changes, I am stable now… I have good days and bad days. My muscles are all still here and plenty strong, they just don’t work right anymore. They don’t all fire together and hold the contraction right. The new symptoms are often painful and I’m on a lot of strong medicine to overcome that part of it. It’s also pretty exhausting when I’m on my feet all day, so just like last year, I can’t walk a lot. You may not realize if you haven’t been, but SXSW is a lot of walking… so unless I want to get Gob Bluth’s segway, I don’t think I could make it past the first day.

In last year’s post I posted how I had hope of returning to normal activity by the summer, well that time has come and gone and I’m still not there. I have a lot of faith in God and a little bit of faith in doctors and it’s possible that I could eventually return to normal activity and I’m working towards that as a goal. I’m currently seeing a new doctor who says I will have a diagnosis and a firm prognosis in the next couple of months. I’m looking forward to knowing what my long-term prognosis is, good or bad, and once I know I’ll figure out whether I will buy a segway for next year or maybe even being able to attend SXSW without a cane.

 

 

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  1. [...] followed my blog (which has been pretty dormant for the last few years), you know as recently as 16 months ago I was walking regularly with a cane. I’ve been blessed to find out what my disease is and [...]

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