Sugar, Fats, and Protein: The Evolution of My Diet

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by Kevin Schaefer |

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Kevin Embracing my inner alien

As a child of the mid-1990s and early 2000s, I still remember when Saturday morning cartoons were still a thing. Every Saturday of my childhood consisted of my parents propping me on my bench in our bonus room so I could watch everything from “Power Rangers” to “Batman: The Animated Series,” and top it all off by stuffing myself with sugary cereals.

Good times.

It wasn’t just Saturday mornings that I filled myself with junk food and high levels of sugar. I ate cereal every morning and excessive amounts of snacks throughout the weekdays, and I wasn’t exactly keen on going for the healthy food items.

I’m not going to lie: My diet as a kid consisted mostly of Froot Loops, popcorn, chicken nuggets, candy, Lunchables, and peanut butter crackers. I had enough health issues as a result of SMA, and it didn’t help that I was an obnoxiously picky eater. I could handle broken legs and surgeries and come out fine, but if anyone tried to shove a vegetable down my throat, I’d be kicking and screaming.

My parents and doctors tried different things to get me to eat more healthily, but ultimately I was a stubborn child. Also, I only used a feeding tube during a long hospitalization when I was in elementary school, and I’m quite relieved that my parents never put me on something like the amino acid diet. I know this diet works for a lot of people with SMA, but just looking at ingredients like “Tolerex elemental powder, Vivonex Plus elemental powder, and Himalayan salt” gives me the heebie-jeebies.

So, what ended up saving me from shrinking into a wheelchair-riding zombie due to a lack of nutrients (which sounds like a cool comic book idea)? MEAT.

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I grew to be an unabashed carnivore, and while I try to have more fruits and vegetables in my diet today, my meat intake remains dominant. I love burgers, steaks, chicken breasts, pulled pork, turkey, ham, and pretty much anything else that comes from farm animals.

Sorry if I just isolated all of my vegan and vegetarian readers indefinitely.

It’s true, though. The amount of meat and protein I consume helps me maintain my energy level, feel fuller, and build muscle strength. Plus, eating has become significantly easier in the past few years with my JACO robotic arm. I used to have to rely entirely on other people to help me eat, but now my robotic arm gives me the ability to eat meals and snacks independently, and look like Iron Man while I do it.

In terms of what I recommend for other folks with SMA, there really is no standard diet. Some rely totally on feeding tubes and specialized diets, while others can eat a wide range of foods. The best thing to do is figure out works best for you, and talk with your primary physician.

These days, I do eat out too much, which is evidenced by the fact that the people at my local Outback know me by name when I call to order takeout. Don’t judge me. Still, I try to have a balance and eat home-cooked meals on most weeknights. I’m far from perfect, but just knowing that I’m no longer a stick of a human being who refused to eat anything unprocessed or full of sugar reminds me I’ve come a long way.

Let’s talk about diet. What are your thoughts on my diet? Which diets do you follow? Chat with me at the SMA News Today forums.


Note: SMA 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 other 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 SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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