Life with inclusion body myositis (IBM) is difficult; there are no two ways about it!
I am 63 and was diagnosed with polymyositis 20 years ago. But, my diagnosis was revised to IBM in 2013.
I first got a guitar when I was 12, for Christmas of 1968. I went to college, got married and had two kids, and I worked in educational television, all the while playing guitar.
In 2004 I started having trouble standing and playing, and would usually find a bar stool to sit on when I needed to. In 2010 I went on disability from work but kept playing when I could. I bought a few kitchen bar stools and started pretty much sitting the whole time I’d be playing.
It was about this time that it got increasingly harder for me to pack my amp and guitars, and by about 2015 I transitioned to a wheelchair most of the time.
[zombify_post]
that is awesome Jay. we are warriors and refuse to let this disease take our happy places; at least not with out a knock-down-drag out fight! thanks for sharing.
@jaymo It’s so wonderful to know you can still play the guitar. How do you cope now playing in a wheelchair?
Hi Jerry, thank you for publishing my piece! As far as playing in a wheelchair, it’s not ideal. My band actually practices in the bass players basement. They haul me down 7 or 8 stairs in my chair, then back up when we’re done. Talk about above and beyond. But at a gig, it’s always kind of frustrating. We usually put me in a spot, then set up everything else around me, so I’m usually stuck for the duration.. it’s not as spontaneous as it used to be(what is?) but I have a great support system between the guys, my wife, and my two sons. They all know how much it means to me to keep it going, but at some point I’ll probably hang it up, but for now I’ll keep it going. That’s why when I read about single people, on their own, I count my blessings…
Jay
Thanks for sharing it! We look forward to you sharing more.
It’s great that your band is so helpful and understanding and that you have such a wonderful support system. Keep playing as long as you can my friend!