Key Takeaways
- Independence is essential for daily life, especially for those facing challenges like Duchenne muscular dystrophy independence.
- Maintaining independence can be difficult; obstacles include needing help with simple tasks like picking up items or using the bathroom.
- Communicating needs becomes crucial when support isn’t readily available, as it can lead to difficult and uncomfortable situations.
- Supporting independence starts with understanding; small acts of assistance can greatly impact those in need.
- With a positive mindset, individuals can achieve independence despite the difficulties associated with Duchenne muscular dystrophy.
Independence Shapes Everyday Life
Independence is not a luxury – It’s a necessity, and it’s extremely important to me.
For me, independence means being able to do things with little to no help from others.
This matters because it can be hard to ask for help, especially when people aren’t available or around when you need them. That’s why maintaining as much independence as possible is so important to me.
The Daily Challenges of Maintaining Independence
I’ve faced many obstacles while trying to be independent. For example, if I drop something, I can’t always pick it up on my own. If I accidentally make a mess and can’t clean it, I may need help from others to do so. These situations impact me because when I drop something or make a mess, I must wait for someone to help or clean up after me. I’ve worked to overcome these obstacles by being extra careful when grabbing things, so I don’t drop them or make a mess.
Resilience, to me, means pushing through hard times—even on days when I’m not feeling my best. Over time I’ve had to push through difficult days more often, testing my resilience. Still, I try to focus on the positives in life when things are hard.
When Independence Depends on Others
It can be very difficult to rely on others when you need help and no one is available. However, it’s not always hard to rely on others—I just have to communicate what I need when I can’t do something myself.
I once had to use the bathroom badly, but no one was available to help me right away. My help didn’t arrive for about 30 minutes. I can’t use the bathroom independently, so I had to try to wait. I became upset and my stomach started to hurt and feel like it was twisted into knots. I couldn’t hold it much longer, and I ended up being unable to wait the full 30 minutes, so when my help arrived, they had to clean me up.
I wish others understood how difficult it can be to do seemingly straightforward things, like using the bathroom, when you’re unable to get out of your wheelchair. The simplest things are not always simple for people living with Duchenne Muscular Dystrophy. Insurance companies need to understand that independence—especially in the bathroom—is essential to our dignity and daily lives. Access to the right equipment shouldn’t be a battle.
Supporting Independence Starts With Understanding
Anyone can help support independence.
It’s as simple as helping someone reach something on a table or assisting with something that’s too heavy.
It’s important to understand that just because someone is in a wheelchair doesn’t mean their brain works any differently—they want to be treated like everyone else. Independence can be very hard to achieve while living with Duchenne Muscular Dystrophy, but I don’t let that stop me.
With a positive mindset, independence is still achievable.
Independence Provides Opportunity
Whether supporting clinical trial participation, healthcare access, or everyday independence, accessibility matters. Learn how patient voices can help identify barriers, inform solutions, and create more inclusive experiences for the communities you serve.
