I always try to pause to appreciate the small victories

I’m currently continuing to do the exercises my physical therapist recommended during my last therapy session. However, it hasn’t been stopping the progression of my facioscapulohumeral muscular dystrophy (FSHD). While I’m hoping the exercises are slowing the progression down, it seems like it gets harder every day for me to move.

This relentless progression has led me to reflect on every victory, big or small, as I proceed through my day.

The first victory of the day is getting out of bed without the assistance of my adjustable bed. My wife, Wendy, periodically asks me why I don’t raise the head of the bed to make it easier to get from a prone position to a seated one. My response is that I want to hold on to the ability to do this without assistance for as long as I can. I’ve used the bed on a few mornings when I’ve woken up in more pain than usual, but I consider it my first victory of the day when I can get up independently.

I’m always out of bed before Wendy. I like to get dressed, which I can still do independently, so I pause to appreciate it. Then I make my way to my new accessible bathroom. The elevated toilet makes it much easier for me to get up. The grab bars help me balance as I reassemble my clothing. It’s a victory for me to do this independently.

I head from the bathroom to my music and computer room, where I insert my hearing aids, as nerve deafness is another symptom of FSHD. I reconnect with my walker, which allows me to move around the house a lot more safely. I count overcoming my reluctance to switch to the walker as another victory.

Recommended Reading

July 10, 2024 Columns by Robin Stemple

What I want people to know about FSHD and its progression

Check marks in the victory column

My next stop is the kitchen, where I take my vitamins and make a cup of coffee. It might seem insignificant for most people, but being able to get my own cup of coffee is another victory.

My coffee cup goes into the drink holder on the walker, and I move to the living room. I spend the next hour or so talking to God about the many people, places, and events I have on my prayer list. I read some devotional materials.

On a typical morning, as I’m finishing my prayers and coffee, I feel the call of nature. Coffee will do that to old geezers like me. It’s time to stand up from the comfortable rocker/recliner, where I love to sit as I pray. Standing up has become more difficult; it takes everything I’ve got, so I celebrate every time I get on my feet.

After a bathroom stop, I go to the kitchen, where I’m still able to make another cup of coffee and assemble a simple breakfast of cereal with fruit. This is one more check mark in the victory column.

It seems like a bit more of a challenge every day, but I can still get my bowl of cereal and coffee moved to the kitchen table. These days, this involves a little more sliding on the counter than it used to, but I get the job done. Give me that checkered flag, although it’s not quite time for a victory lap yet.

One of the more challenging tasks of preparing breakfast is getting the milk from the refrigerator to the table, pouring it without spilling it, and returning it to the refrigerator. I’ve had problems with this in the past.

A few years ago, I asked Wendy to start getting our milk in half gallons instead of gallons, which were too heavy for me to handle. Last year, I had to ask if we could get our milk in quart containers, as the half gallon ones became too heavy, too. We’ve downsized to quart containers, but I count it as a victory every time I can get the milk onto the cereal without incident.

When I’m out performing music at a nursing home, my fingers feel stiff and clumsy. I can’t play like I used to. FSHD has taken that away, too. It’s also affected my voice, and I can’t sing like I used to. Some days I struggle just to speak, but I’m still out there, doing what I can. I feel like a winner every time I get the opportunity to bring joy to people through my music.

Thanks to FSHD, I can feel my hands tiring even now, as I type my last few thoughts for this column. But I think this one is about finished. That’s one more victory for me!

Until the next time, I encourage you to count your blessings and focus on your victories, big and small!

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.