I’ll continue to do what I love, despite the FSHD ‘hangovers’

My wife, Wendy, and I had a wonderful Sunday recently. We rose early and hit the road to Shanksville, Pennsylvania, where we had lived for over 41 years before moving to Pittsburgh to be closer to our kids and grandkids.

I’d agreed to play for the 10:30 a.m. service at our former church, the Unity United Church of Christ. I needed to arrive at around 9:15 a.m. to rehearse with Jeannie and Tammy, two of the singers from my former contemporary Christian group. The rehearsal went well and we were ready to go by 10 a.m.

John, the church’s soundman, asked me if he should play one of the 10 hymn CDs I’d recorded, as he usually does while people gather for the service. I told him it wasn’t necessary, as I’d play some live music since I was there in person.

The church service went well. Tammy and Jeannie did a beautiful job on their songs.

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The children’s choir also sang beautifully. I’d played for that choir for nearly 40 years. Since I’m no longer at Unity, the kids sang along with a prerecorded background track. I was happy to see that they are continuing to sing. They also performed a number on bells, which is something brand new for Unity.

Wendy and I picked a great day to make the two-hour drive. After the church service, there was a traditional covered-dish dinner. We enjoyed a wonderful meal with our Unity church family, which gave us additional time to catch up with many old friends.

Wendy struggled a bit on the drive home, which she blamed on the tryptophan from the delicious turkey. She’s an excellent driver, though, and we arrived back home around 3:45 p.m. without any problems.

Next we went to Pittsburgh’s downtown theater district, where we enjoyed a performance of “MJ The Musical.”

Altogether, it was a wonderful day, filled with a lot of music, family, friends, fellowship, and food. Sadly, though, the following Monday, I had an “FSHD hangover,” caused by my facioscapulohumeral muscular dystrophy.

I’ve been drunk three times in my life: once in high school, once in college, and once when I was in my 20s. I’m not sure why it took me three times to realize that whatever pleasure I got from alcohol just wasn’t worth how awful I felt the next day. Since then, even when performing professionally at bars and nightclubs with various musical groups, I prefer to stay sober, with only the occasional toast, perhaps for New Year’s Eve or at a wedding.

An FSHD hangover is different than an alcohol-induced one. Fortunately, an FSHD hangover doesn’t include the nausea, throwing up, or dizziness. Unfortunately, as usual, my FSHD hangover the following Monday did include major aches and pains. Even when I sat perfectly still, some body parts were complaining. I felt much worse if I tried to move an arm, shrug a shoulder, or stand up.

There’s a major difference when I compare my recent FSHD hangover with my memories of past alcohol-induced hangovers. I never plan on getting drunk again, but I do plan on continuing the kinds of things I did on that recent Sunday, even if they cause an FSHD hangover.

I’m making a conscious decision to continue doing things that I enjoy. For now, it’s worth it. These days, “One Day at a Time,” one of the songs I include in my nursing home performances, expresses it best. I believe God will “give me the strength to do everything that I have to do,” even if it causes me some pain.

I’ll have to revisit this decision at some point down the road as my FSHD progresses. However, at least for today, FSHD isn’t in charge of my life. I am. I’m praying it stays that way for a long time to come.

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.