“Use it or lose it” could possibly be one of the most damaging ideas out there to people with a degenerative muscle disease. The sentiment means that if you aren’t moving, you will lose the ability to move.
It’s not wrong. Inactivity can cause atrophy. I would guess that anyone who has had surgery or worn a cast knows well enough that strength is lost during that recovery period. Almost all instances are followed by physical therapy to regain strength.
Use it, or lose it. What does it mean to those with a muscle disease? At its worst, it means that if you are getting weaker, that it’s your fault for not being active enough. At face value, it means that you have control over your strength. To some extent, we all want to believe that we can control atrophy. Can we try physical therapy, yoga, water therapy, or stretching? The only person that can answer that is the individual. The reality is that we are all unique and when it comes to many conditions like Emery-Dreifuss Muscular Dystrophy, no one really knows what can help.
What doesn’t work is pushing our bodies. It does no good to stress our muscles beyond what they are capable of. This condition means that our cells do not properly create new muscle effectively. Usually we can maintain, but we cannot easily repair. We certainly cannot increase, which requires us to intentionally break break down muscle through exercise. (Gentle exercise has shown improvement in some, but seems more as a muscle memory, not an increase in muscle mass.)
Unintentionally, “use it or lose it” will manifest into “push yourself or lose it.” The reality is that we are really losing it even though we are using it.
This idea is why I intentionally wanted our first home to have stairs in it. While living in first-floor apartments, I realized that using stairs was difficult at my parents’ house. I concluded that I needed to have stairs to use again, so that I wouldn’t lose that ability. Nine years later, I’m stuck in a home with stairs that create a barrier in my life. I try not to go upstairs except to go to bed. I’ve been coming down the stairs on my butt for at least 4 years now. It’s debatable if having stairs preserved my ability any longer than it would have without it. Luckily, we are about to move into a zero-step, accessible home.
At what point does “using it” turn into simply being stubborn? I can walk. My legs hold me up enough. So I should keep walking. But extreme lordosis (an inward curvature of the spine) and neck contractures make my body lean back so far that I can’t even see the ground ahead of me. It’s exhausting. It’s easier to stay in motion than to stand still. What am I really going to lose with this quality of walking? Not too much.
Many of us have enough sense to say “enough is enough” and take that next step to ensure a higher quality of life. But many more don’t. For some, pride gets in the way. They continue to be miserable pushing themselves or worse yet, forego activities all together.
With disabilities like this, becoming weaker isn’t your fault. It’s the nature of the disease. Very rarely is suggested activity level anything more than opinion. For me, my healthcare team is content that my activity level consist of daily tasks. I’m grateful for that guidance since taking a shower feels like a workout in itself. I just need to keep up with normal activities in the easiest way possible.
What is most important is that we learn to enjoy the highest activity level possible. Do the things that make you happy. Be willing to adapt and change so that a disability doesn’t become the barrier from doing things. You don’t “lose” anything by using a wheelchair. You don’t have to “lose” anything by doing an activity a little differently.
No one said how to use it anyway.