Advent is the beginning of the church year for Christians. What better way to start the year than with a season of hope? During Advent, Christians prepare for the coming of Jesus, whom we believe is the incarnation of God. He entered our world, becoming human, when he was born…
It’s a wintery Monday morning as I write this. My wife, Wendy, left a while ago for an all-day outing with her knitting group. My daughter Jill, who lives with us, is working downtown today. It’s just as well. They say misery loves company, but I’m better off being by…
I’m a member of the Western Pennsylvania chapter of the FSHD Society, which serves as a support group and a partner in the nationwide Walk & Roll to Cure FSHD campaign aimed at raising funds for the search for a cure for facioscapulohumeral muscular dystrophy (FSHD). The Walk…
I have a growing list of limitations, as a result of my facioscapulohumeral muscular dystrophy (FSHD), my blindness, and other injuries from a long-ago head-on collision with a drunk driver. My wife, Wendy, and my daughter Jill, who are my primary caregivers, provide essential help every day: preparing meals,…
In the past couple months, I’ve had more medical challenges than usual. My right arm hasn’t been working well, leading to some additional struggles with activities of daily living. In June, what I thought was a bug bite appeared on the knuckle of my right middle finger. It would swell…
My daughter Jill and my wife, Wendy, are my primary caregivers. In August, Jill and Wendy traveled to Iceland together. The day before their departure, we had a “bon voyage” family picnic. It was a lovely gathering, but I ended up with a couple of bug bites on my left…
My facioscapulohumeral muscular dystrophy (FSHD) causes a variety of symptoms that affect every aspect of my life. Sitting up in bed is a challenge. Getting dressed is tiring. Standing up has become a laborious process. I’ve had to adapt the way I brush my teeth. Eating is a…
I’ve been on my own for the past 10 days while my wife, Wendy, and daughter Jill have been vacationing in Iceland. It’s been challenging. A couple years ago, when Wendy and Jill traveled to Croatia, Greece, and Slovenia, I wrote a column titled “Good to know that I…
I’m a musician, and so are my brothers, Ron and Tim. We’ve all played professionally, but it’s been a long time since we’ve played together. That changed last month, but let me explain why it was such an event. Back in the late ’70s we were part of the…
Last summer, I wrote a column about my beach vacation with my family. It was an incredible trip, but I had my doubts about future travel. With my facioscapulohumeral muscular dystrophy (FSHD) progression accelerating, I had to acknowledge that future travel might be difficult, if not impossible. My daughter…
Get regular updates to your inbox.
