A seasonal treat offers a reprieve from my swallowing difficulties

Ice cream wasn’t always one of my favorite treats. Don’t get me wrong, I loved it, but it wasn’t one of my go-tos when I wanted something cold or sweet. I think SMA is part of what changed that.

When I was 13, I barely survived a series of life-threatening illnesses. I was hospitalized for several months, and every part of my body paid a heavy toll. Using what little muscle I had was an impossibility for the duration of my stay as I lay in bed fighting for my life, and that disuse led to the rapid progression of the atrophy already caused by SMA. By the time I was discharged, I’d become newly dependent on a ventilator, tracheostomy, and feeding tube.

While I’m now healthier than ever in some regards, I never recovered from that time. I still cannot breathe fully on my own and continue receiving medications and nutrition through my feeding tube. Inadequate oral food intake is often related to complex health conditions like SMA, so the feeding tube is required to meet my daily nutritional needs and maintain a healthy weight. I’m limited in the quantities and textures I can consume, but I’m able to partake a variety of foods for enjoyment in moderation.

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Now that I take Evrysdi (risdiplam), I believe it has helped sustain my swallowing abilities. It’s been one of my greatest benefits from treatment. I feel more comfortable enjoying pleasure food as I’m less likely to aspirate (when food goes down the trachea instead of the esophagus), which can cause pneumonia.

This is still a risk necessitating vigilance, however, and just last summer, an overly fried cheese curd slipped down the wrong pipe and caused the need for emergency airway clearance from my mom in the middle of a restaurant, followed by several weeks of illness. This is an area where I’m hopeful future treatments might offer even more improvement so that I could increase my opportunities to savor different experiences.

Halsey Blocher enjoys a a key lime pie milkshake at a favorite shop to support a local fundraiser in the summer of 2025. Ice cream is charitable, too! (Courtesy of Halsey Blocher)

When it comes to liquids, I can only swallow thicker consistencies, so I’ve been drinking naturally thicker beverages, like smoothies, for over a decade. It’s been about 20 years since I drank water instead of just running it through my feeding tube. That’s why one food that’s remained accessible to me is ice cream. It’s smooth, easy to swallow, and requires little to no chewing. Not to mention, it’s pretty tasty and comes in lots of flavors.

Cold Agglutinin Disease News columnist Mary Lott also loves ice cream, but there was a time when she thought she needed to give it up because her condition is triggered by exposure to cold. She writes about the point when she decided to forgo cold beverages and this favorite comfort food for the sake of her health.

What a relief it must have been when, after several years of denying herself, Mary learned from a specialist that cold food and drinks were actually safe for people with cold agglutinin disease to consume! Now, she’s back to enjoying ice cream, just the way she likes it.

Ice cream doesn’t let me down

I, however, have begun adapting how I eat this treat in recent years. While ice cream is my friend, spoons are not. As my arms, hands, and fingers have continued to weaken, it’s become a struggle to lift utensils all the way to my lips. While forks can be angled upward with the food secured to the end to compensate for my lack of reach, spoons must stay flat or else the contents will fall off and become a little too well acquainted with my shirt.

Despite this challenge, ice cream doesn’t let me down. It’s not just good as food. It’s drinkable, too. Now, I typically order whichever flavor I want as a milkshake so I can sip it through a straw. Most shops I’ve been to will make any of their specialty flavors into a shake, allowing me the same selection as everyone else.

Summer is my favorite season for a multitude of reasons, related to both preference and accessibility, and one of them is that my drink options become more varied as the seasonal ice cream shops reopen and restaurants expand their menu to include frozen drinks for a few precious months.

This offers me greater assurance that I’ll be able to enjoy and participate alongside others on certain outings. Even if my body is tired, I won’t have to think so much about my swallowing difficulties because I know there will be a few easy options available that accommodate my needs. This accessibility hack is so ordinary for anyone that it doesn’t even draw attention to the fact that I’m doing it because of a medical need (and again, it’s yummy).

Now, if only I could get all the ice cream shops on the same page about which straws are best.

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.