FSHD progression requires me to lighten my music rig
Retiring heavy instruments and equipment has been difficult, but necessary
I’ve played music since I was 5 years old. My first professional playing job was as an accordionist in a Polish polka band when I was 13. My accordion at the time was a full-size Excelsior 120 bass model that weighed about 35 pounds.
My professional playing career took a lot of turns over the next 18 years. I enjoyed playing in a rock group, a polka band, a disco group, a country band, and, eventually, a prototypical “wedding” band that did a little bit of everything.
My playing rig grew to a four-keyboard stack with a mixer, power amplifier, and two gigantic speakers that gave it all a fantastic sound. It also gave me a workout, setting it up, tearing it down, loading it up, and hauling it around. It all fit into a station wagon, but a truck worked better.
When my professional playing career ended on June 11, 1989, as a result of a head-on collision with a driver under the influence, I had pared the rig down to one keyboard, a powered mixer, and a single, not-quite-so-gigantic speaker cabinet. It all fit nicely into my little Chevy Sprint hatchback, with the back seat folded down.
After the car crash and a year of rehabilitation, I started playing music again, but I limited my playing to church and nursing homes. The contemporary Christian group from my church decided at some point to play at local festivals, but I had a deal with them. They took care of hauling and setting up my keyboards; I just played.
In 1993, I purchased a small 32 bass student accordion that I used to play at nursing homes. This worked well. I could carry it in my left hand while navigating independently, holding my mobility cane in my right hand.
As my facioscapulohumeral muscular dystrophy (FSHD) progressed, I was forced to switch to a wheelchair when going any distance. For my music ministry, this actually created an opportunity. I purchased a small speaker and headset microphone that allowed me to be heard better when I led sing-alongs at various facilities.
I always told my volunteer drivers that all of my equipment had to fit on my lap once I got into the wheelchair or it wasn’t coming with us. The student accordion and tiny speaker fit nicely. My drivers didn’t need to carry anything for a nursing home gig.
About a year ago, I purchased a battery-powered speaker that was just a few pounds heavier than what I’d been using. The speaker sounded better than my old one. I also loved that it didn’t need to be plugged in. I bought a better equipment bag for the speaker to protect my investment, which also added a couple pounds to my rig. This setup worked for me over the last year, but that’s changed recently.
My lightest rig yet
FSHD is a degenerative disease. I continue to lose muscle function, despite doing the exercises recommended by my physical therapist.
Over the past couple months, I’ve really struggled to play the accordion. Although it’s only about 12 pounds, it now feels more like 120 pounds when I put it on. My arms and hands aren’t working well anymore, especially when playing the instrument. As a result, I’ve made the painful decision to retire my accordion. Hopefully, one of my grandkids will be interested in trying it out when they get a little older.
I’m grateful to the folks who’ve volunteered to drive me for performances since moving to Pittsburgh. However, I’ve noticed a couple of them really struggling with my speaker bag. I can’t lift the bag myself, so, to make things easier for my drivers, I dug my older, lighter speaker out of storage. For my most recent playing engagement, the little speaker and headset microphone were all I took with me.
This is the lightest rig I’ve ever used. It made things much easier for my driver and me.
The speaker doesn’t sound as good as my newer model, but it still works. I will miss the accordion, which added a nice variety to my set and gave the muscles between my shoulder blades a little break when I changed over to it midset. At this point, I have little say in the matter. It’s either make these changes or stop performing.
I’ve been playing music for well over 50 years. I want to continue as long as I can, but I’ll just have to take it one performance at a time. Someday, I know FSHD will make this impossible, but that day isn’t today. Still, I know that day is coming. I have to admit that this thought depresses me when I think about it. I do my best not to.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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