Just eight years ago, a four-hour trip to Disneyland would barely touch me. I’d go on a few rides, have a bite to eat, come home, take a nap, and be ready for school the next day. These days, even having my friends over at my house…
You, Me and MD — Leah Leilani
Leah is a Southern California-based patient writer. She’s been an active member of the muscular dystrophy community since her regional ambassadorship with the MDA beginning at the age of 10 after her diagnosis of a rare neuromuscular disease, mitochondrial myopathy (Mito). Leah advocates for those with disabilities and promotes an understanding of her condition by evoking a positive outlook upon the obstacles she faces. Leah’s work doesn’t just stop at her column: she also doubles as a co-moderator on the MD News Forums. Away from her jobs, Leah is known among family and friends for her artistic creativity and outgoing personality.
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Dear readers, This will be my last column for Muscular Dystrophy News. I want to thank you for following along with “You, Me, and MD” and for supporting me. You are the reason I write, and I hope I have made some difference in your…
Leah Leilani -- You, Me and MD
Everyone suffers from insecurity every once in a while. It doesn’t matter whether you’re a man or a woman, a child or a teenager. Nor if you’re disabled or able-bodied. But when your body starts to fail you, that can sometimes escalate those occasional feelings of self-consciousness. Before…
Whether you or your loved one has a chronic illness, it’s important to prepare for hospital stays. Despite my many visits to the emergency room, I’ve only had to stay in the hospital a few times. We keep a suitcase in the car full of essentials for an…
Every once in a while, I am asked, “Who are the most influential and inspirational people in your life?” I could name more than a handful of people, but the truth is, no one in my life has shaped who I am more than my mom and dad.
Chronic illness can dramatically alter life perspective. If there’s anything I’ve learned from having mitochondrial myopathy, it’s gratitude for my surroundings. I guess I’ve developed a kind of mindfulness from days spent inside my house trying to regain energy. If I’ve drained too much energy, it can take…
A lot of people think that asking for help is a piece of cake. A walk in the park. But I’ve learned, not only from experience but also from watching other people, that it’s not always that simple. Even now, after living with mitochondrial myopathy for 14…
Renovating your home for wheelchair accessibility can seem like a daunting task. You would not be wrong. It is an overwhelming project and some people don’t know where to start. The cost can also be intimidating, too. It may not be affordable when you’re constantly paying your medical…
Fitbits aren’t just for able-bodied fitness gurus; they have many more features than just counting footsteps. As I was out on a shopping trip with a friend a couple of months back, I realized she was wearing one. I immediately thought, “Oh, she’s just trying to be more…
Being wheelchair-bound and still stylish can be the ultimate challenge. It’s hard to find that balance between style and comfort, especially as a woman. The average, able-bodied female millennial has enough trouble going into a store and finding a garment that not only looks good but also makes…
I’ve had bad posture my entire life. Growing up, I didn’t know why I always slouched so much. I just knew that I was comfortable that way. Years later, I realized that it’s because of the muscle weakness caused by mitochondrial myopathy. Last year was the first…
For the first couple years of having mitochondrial myopathy, I used a manual wheelchair to get around. But when the time came to receive my first power wheelchair, my family realized that they would not be able to lift and fold it into the car. So, we started…
It’s inevitable that people will treat you different when you’re in a wheelchair, whether that works in your favor or against it. It’s nice when people open doors for you or offer to help you with something. But then there are the stares. Being in a wheelchair while also…
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