Working Through the Process
— Robin Stemple

One problem dealing with a progressive disease like facioscapulohumeral muscular dystrophy (FSHD) is that there’s no way to predict the pace of disease progression. I think this is true for the aging process as well. In my case, it may also apply to the joint deterioration I’ve experienced following…

Last week was a busy one for me. In addition to my normal activities, I took field trips on Tuesday and Thursday, looking for solutions to some of my recent struggles related to facioscapulohumeral muscular dystrophy (FSHD) and other health issues. I’m really struggling to get around our…

Recently, standing up has become even more difficult for me than it previously was. The last few times I sat in my comfy recliner in my music and writing room, I worried I might have to call 911 for help getting up. My son, Ryan, had already added 3-inch risers…

My facioscapulohumeral muscular dystrophy (FSHD) has progressed to the point where daily activities are increasingly challenging, and often impossible, to manage on my own. As a result, I now need more help than ever before. I know I’m doing the best I can. I exercise daily, hoping to keep…

My family and I have never been athletically inclined. Our talents lie in other areas. That being said, we’ve enjoyed watching the recent Winter Olympics together. As a blind person, I couldn’t see the skiers, skaters, sliders, riders, jumpers, and other athletes in action, but the commentators provided descriptions…

Pittsburgh, where I now live, receives far less annual snowfall than Shanksville, Pennsylvania, where my wife, Wendy, and I lived for 41 years. Shanksville, in Somerset County, sits squarely in the state’s snow belt. However, every so often, Pittsburgh experiences true winter weather, with bitter cold and significant snowfall. Just…

In my previous column, I shared my concern about losing more strength due to the progression of my facioscapulohumeral muscular dystrophy (FSHD). This loss was making it increasingly difficult for me to get out of my friend Richard’s Subaru. Richard, who is also a musician, not only drives…

In the book “Good Enough: 40ish Devotionals for a Life of Imperfection,” authors Kate Bowler and Jessica Richie write, “Blessed are you who are buried. You who feel stuck in the depths of grief and despair or who sit in the pit of unknowing.” Since reading this devotional,…

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,…