How do my family and friends feel about my FSHD progression?
Written by Robin Stemple, Muscular Dystrophy News Today, June 25, 2025
I’m an early riser. As I mentioned in a past column, I like to wake up early, get dressed, make coffee, and start the day with some quiet prayer and devotion time.
However, I’m also a very sound sleeper, with some help from melatonin, sleep medication, and a comfy mattress. From the time I fall asleep around 11 p.m. until about 5:30 a.m., I’m dead to the world. Some shoulder, hip, or knee pain may wake me up during those hours, but I usually manage to roll over and go right back to a dreamless sleep.
If I have dreams at all, they’re inconsequential. I typically can’t recall them after waking up. I had a dream last week, however, that’s stuck with me. Perhaps I’m supposed to share it with you.
In this dream, I was eavesdropping on a conversation my wife, Wendy, was having with a friend. It wasn’t a specific friend — just someone she felt free to confide in.
In the dream, Wendy was relating how difficult it’s been for her to watch my decline due to facioscapulohumeral muscular dystrophy (FSHD).
“It’s so hard to watch Rob as he struggles to stand up from a chair,” she said in the dream. “Sometimes I just turn my head and try not to cry. I try to let him do as many of the things he’s always done as is possible, but I know they’re getting harder and causing him pain. Sometimes I take advantage of Rob’s blindness and just do things myself. If he asks about washing dishes, emptying the dishwasher, or some other job, I just tell him it’s done.”
She went on to say how hard it is to watch as I struggle to turn around to get out of the car and into my wheelchair, to get a bite of food from my plate to my mouth, or to pick my head up off my chest.
This is a hard story to share. I have no idea where the dream came from. Keep in mind that it was only a dream; these thoughts don’t reflect Wendy’s feelings about my disability. But they do make me question what the significant people in my life think about my declining health.
Is it hard for them to be around me? Does my disability progression make them sad? Does it bring up concerns for themselves or other family members that they’d rather not think about? Do they have questions?
Starting conversations about my disability
Wendy and I have been married for more than 45 years, but I’m the first to admit that I don’t always know what she’s thinking. No matter how close we are to other people, I don’t think we can ever know their thoughts with any degree of certainty unless we ask. She’s always seemed to handle every struggle we’ve had without complaint, but I wonder how much of an emotional cost Wendy has paid to maintain that outward calm.
Over the past week or so, as I’ve thought about this dream, I’ve been reminded that I don’t live in a vacuum. I’m living my FSHD journey with Wendy as well as my children, grandchildren, extended family, friends, and neighbors. It’s made me realize that I need to try to be more sensitive about their thoughts and feelings. My FSHD affects their lives nearly as much as it affects mine.
I’m a lot more open about how I feel than I used to be. For better or worse, I usually let people know how I’m doing.
I’ve never given it much thought, but perhaps I need to start asking Wendy and my daughter, Jill, my primary caregivers, how they’re holding up on this journey. It might be time to have some frank conversations with the rest of my family as well. FSHD is a genetic condition. At the moment, I have just one cousin who’s also been diagnosed with it, but the condition could eventually impact my children, grandchildren, nieces, nephews, and other relatives.
Over the past 50-plus years since being diagnosed with FSHD at 14, I’ve learned a lot about the condition. If I give my loved ones the opportunity, I hope I can answer some questions, share some insights, and talk about how my disability impacts their lives. I hope that, in some way, any conversations we have about FSHD will draw us closer.
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.