active 4 months ago Jay Rawley

@jaymo

Member since March 23, 2020

Total Reads: 232
Total Posts: 1
  • Jay Rawley changed their profile picture 4 months ago

  • 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 ev…[Read more]

  • 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 […]

    • @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!

    • 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.

  • Jay Rawley became a registered member 4 months, 2 weeks ago