What is your Name? Jonathan Koch (Jonny)
How long have you had Myasthenia Gravis? Since 1992.
We understand that you are in a band. Can you share more about your band and where you play? We play all over. I spent a lot of my life playing the older country music legends. Opened or shared the stage with about everyone from the 70's 80's country era. Our band is more of a regional band. We do mainly conventions, fairs and festivals.
How has Myasthenia Gravis impacted your role in playing music? Well, the double vision and droopy eyes were the worst. When you have stage lights in your eyes it makes everything so much worse. Or the sick feeling we all get when we are a little disoriented from the double vision. The worst part was growing up having records in the mile, running cross country all over the United States, three time wrestling state champion to falling over my feet trying to walk out of a practice. Or wrestling someone you should be a lot better than but you don't have a grip to do anything. Then back in the 90's bouncing around hospitals trying to find answers. Then like everyone, we don't want to accept the answer. So you try harder which makes everything worse. But, once you come to terms with a diagnosis and learn about your disease you can cope. We may not overcome but we can learn to live a more normal life.
Tell us about your custom guitar. I just wanted to bring awareness to MG. I asked Backwoods Guitars in Sedalia Mo, Eron Harding if he had ever made a Gibson Style SST, which is a steel string electric guitar that sounds acoustic. He hadn't, but was willing. With it being custom he was able to do things how I wanted. Examples; I wanted the frets a little smaller like a parlor guitar to ease muscle fatigue in my fingers. Then we set the neck in a little more so I wasn't making my arm reach out as far so I wouldn't work my arms as much holding the guitar. Being in my late 40's, I know my time playing and singing is limited because of MG so I wanted to make the best and try to extend my playing by having this guitar fit my body exactly how I hold the instrument. It has made life easier. I choose the SST design because it is an acoustic without having feedback on stage and also not having to reach over the guitar all night. I had the MG Warrior Strap made by Patrick Ramshead. He is a disabled Vet in Kansas who does leather work. Together they really promote MG Awareness.
Anything else you’d like to share with us? MG is about the journey. From the start we feel helpless and just want answers. But, we will be remembered by what and how we live after the diagnosis. Even though I make it sound like I'm ok with MG, I have had breakdown, ready to quit days. I worked it out on my own. We have great organizations and peer groups now to ask questions and get help. I encourage everyone to always ask questions. We aren't alone!
For more information about Jonathan's band you can follow the Tightwad Troubadours on Facebook.
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