Answering 11 common questions about muscular dystrophy

When it comes to disability, it’s been my experience that most people are either afraid to ask questions or will be completely shameless and ask way too many super invasive, personal questions. While I definitely prefer the first kind of person, the common thread is this: curiosity. 

For the most part, I have no problems with curiosity. As long as it’s not being used against me, in an inspiration-porny kind of way or just general asshole-y ness. I like to think that people are good and give them the benefit of the doubt. And learning about disability is a good thing! The more people are willing to have an open and honest dialogue about disability, the more acceptance there will be surrounding it.

I’ve been noticing people searching random questions on my blog lately. All of them being about muscular dystrophy. And I love that! I love that people are trying to educate themselves on something they aren’t familiar with. I mean, asking a stranger on the street about their private, personal medical history and intimate details of their body is never cool. But this is a safe space here to talk about it! So today I’m just going to go down the list and answer some of the questions I’ve gotten the most, and address a few misconceptions about muscular dystrophy as well.

Young woman (Karly) sitting in her power wheelchair in front of a pink and blue wall. She's wearing a white, striped dress with a white hat that has a small rainbow on it, and a disney tsum tsum lanyard around her neck.

“What is muscular dystrophy?”

Muscular dystrophy is a neuromuscular disease that results in progressive muscle wasting. There’s a lot of different kinds and subtypes and they all have varying symptoms and severity. I have congenital muscular dystrophy, which is a subcategory of diagnoses that are present at birth. I never got further testing for a more specific diagnosis.

Basically, since I was born, I’ve gotten weaker and weaker. All of my muscles are impacted, not just my legs. It’s my entire body, including my heart and lungs, my arms, my jaw, etc. Everything. And because it’s progressive, I’m significantly weaker than I was as a kid, and trust me, I was a pretty flimsy kid. 

I also have muscle contractions. My arms and legs can’t straighten out. My jaw doesn’t open very wide anymore. When I lift my wrist up, to go for a high five for example, my fingers close almost to a fist. There are things you can do in physical therapy or with braces to slow this down, but I’m not currently doing any of that. 

The other main way my body is impacted is the curve in my spine, which was partially corrected with spinal fusion surgery. The entire length of my spine is fused with metal to keep it from curving further. I’m halfway there to becoming a robot.

“Were you born with it/How did you get it?”

Muscular dystrophy is a genetic disease, so I was born with it. Both my mom and dad were carriers, which is why it was passed to me. Neither of them knew until my brother was born, and even after that, doctors told them it was a ‘fluke’. They assured them both that if they had another kid, it wouldn’t have it. Surprise! The doctors were wrong.

“Could you ever walk?”

Nope! I was never able to stand or walk independently. When I was younger, I could sort of stand if I was leaning against something, but if there wasn’t something to brace my legs against I’d topple over. And I had to kind of slide from a sitting position, like off the edge of a tall chair or my bed, down to my feet. I couldn’t push up from a sitting position if that makes any sense.

As for walking, we tried braces and walkers, but I never had the strength to make it work. I hated both because they were just so difficult to even move an inch. Instead, I much preferred to sit on a small bike and ‘walk’ it across the floor. And my first power wheelchair was like having a racecar – I LOVED it. I drove that chair constantly and killed it so fast because I never stopped moving.

There are some forms of muscular dystrophy where kids are able to walk for several years or even maintain that ability into adulthood, but not with what diagnosis my brother and I have.

“Can you just exercise extra to keep your strength?”

*sighs* I think this is actually one of the most commonly asked questions I’ve gotten since I was a kid. People hear the term ‘muscle wasting’ and the first suggestion I get is to just exercise to build more muscle. It doesn’t work like that. And even if it did, it’s hard to exercise when you literally don’t have the strength to open a door or lift anything over a pound. 

Physical therapy can help with things like maintaining mobility and slowing down muscle contractions, but exercise isn’t a cure for muscular dystrophy.

“Can you feel your legs/are you paralyzed?”

A common assumption is that I have no feeling in my legs, but that’s not the case. As far as I know, that’s not a common symptom of muscular dystrophy. I could be wrong, and correct me if I am!

I can’t move my legs much, so I think that’s where the idea probably comes from. But aside from a few areas of numbness from pressure points due to sitting in one position basically all day, I have feeling in both legs.

“Does it affect you mentally?”

This is another one that I get from time to time, although no one is every ballsy enough to come right out and ask. Instead, people talk to me like I’m either 3 or a puppy. For me, muscular dystrophy has no effect on my learning or speech capabilities. I had to have speech therapy as a kid, but it wasn’t any major struggle. Like I keep mentioning, it varies from person to person. I can only speak for myself, and I’m absolutely not an expert on all things muscular dystrophy. But for me, my disability is a physical one, not mental.

“Is there a cure?”

No, there is no cure for muscular dystrophy. But there are new treatments coming out in recent years that are having some really great results! I know for SMA, people have been having a lot of success with Spinraza – Shane has a bunch of videos all about it that I recommend checking out!

I haven’t looked into any treatments for my type currently for a couple of reasons. First of all, it’s hard enough just to get a standard check up at my doctor because being on Medicaid makes everything difficult and slow. Plus, I just hate going to the doctor and honestly try to avoid it as much as I can! I probably shouldn’t, but my family hasn’t had the best experiences with health care. The other thing keeping me from looking into any potential treatments is that I don’t have an exact diagnosis. I sort of fall under that umbrella category of ‘congenital muscular dystrophy’ but I’d have to have more tests to narrow that down further before I could even consider trying to get some sort of (wildy expensive) treatment.

“Can you have sex?”

Shout out to every disabled person on any dating app ever – we’ve all been asked this, usually before being asked a simple ‘how are you?’. Who says romance is dead?

But yes. I can have sex. I’m not getting any, but I could if there were any willing participants. Can you tell I’m single and bitter? Does that show? Anyway, yes disabled adults date, have sex, raise families, get married, and all that fun stuff. I don’t know why the default assumption always seems to be disabled = “kid” forever. I so, so, so hope that ends in my lifetime.

“Can you have kids?”

This one is a tricky one because I haven’t actually talked to a doctor about it. In theory, I’d think technically, yes. I could get pregnant. But I think it’d be incredibly difficult and probably even dangerous for both me and the baby given my condition. I don’t know. But here’s what makes this easy – I don’t want kids! So, easy peasy I don’t even have to think about it. If that, by some unpredictable change of heart, were to ever change – adoption is great. 

“Is it fatal?”

With the right complications, it can be. For a lot of people with muscular dystrophy, it’s things like pneumonia that end up being potentially fatal. When I have a cold, sometimes it takes me nearly a month to fully recover. Any sort of infection that makes its way to my lungs is a huge risk because my body isn’t strong enough to fight it off. There are other things, like pressure sores, other infections, or heart and lung failure, etc etc that are (obviously) dangerous.

But the good news is that medicine gets better and better, and people with muscular dystrophy are able to live longer and longer lives. I’m doing alright for now!

“Does it hurt?”

Honestly? Yeah. It does. Sitting in one position all day makes your hips/butt hurt. I’ve got crappy circulation so my legs swell, turn purple, and even blister sometimes. Muscle cramps aren’t uncommon and they suck for everyone. Currently, I’m still trying to get used to my new wheelchair and haven’t quite found the sweet spot yet. So I’m hurting more than ‘normal’ for me ever since my old wheelchair died and I had to use a loaner. 

Everyone’s pain levels vary with muscular dystrophy. My brother’s are worse than mine. Some people are much less. But I’m lucky that I rarely need to take any medicine and it’s not debilitating. I can manage fine. Most days it’s just like a noise in the background. I’m always aware it’s there, sometimes I can distract myself until I barely notice it. For the most part I just try to think of it as a nuisance. 

I think that covers the basics!

If you have any questions, please never hesitate to leave me a comment or send over an email. I’ll do my best to answer them!

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