Thursday, July 10, 2014

Life with FSHD...Thirty-something and concerned.

I have recently been posting about what it is like living with FSHD or fascioscapulohumeral dystrophy. I would like to continue this theme. I have already blogged about my teen years and my twenties.

My thirties were fairly uneventful when it comes to FSHD. My muscles were still fairly strong and I could still be as active as I wanted to be. I did start noticing weakness in my legs. Stairs had become more of a challenge and a hand rail became my best friend. I remember when I was in college and I was working at a convenience store. I was walking across the parking lot to go home and dropped something on the way to the car. I squatted down to pick it up. Unfortunately, it was a major struggle to get back up. I didn't realize my leg muscles had gotten to that point. That's when I started to think about the future. What if it gets worse? What if...? I couldn't think about that.

Even though I was noticing weakness and feeling vulnerable for the first time in my life, music was still bringing joy to my life. But lugging around a truckload of drums and sound equipment was getting much harder. I knew there would come a day when carrying my drums would be a thing of the past. I started really trying to learn the guitar, because they are much lighter than a drum set. Guitar has become a central part of my life since then. So some good was coming out of all of this.

In my mind back then I knew that if I stayed positive and didn't worry about what the future looked like, good things would happen for me. I still hold those beliefs today. I stay focused, positive, happy and live each day as much as I can. I'll post more later about my forties up to present day.

Until then, keep peace in your heart and a smile on your face.

P.S. I used the FSH Society logo for this post because it was about this time in my life where someone out there just like me was founding this charity. Thanks to organizations like the FSH Society, we will have a cure soon.

My favorite Songwriter Joel Shewmake

Quote of the year...

“Be not the judges of men, but love your brothers and sisters, and find ways to reach out to them in common goals and aspirations. Where there is love in common, the divisions of creed will melt away and reveal the true nature of man’s eternal destiny -- one of unity in purpose, to be perfect as the Father is perfect."

Author Brilliant but Unknown

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