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Nothing spells summer to me more than the tasty food I get to enjoy at cookouts. I get a lot of joy in my life from the many culinary delights of the summer months. But in recent years, complications of my Duchenne muscular dystrophy (DMD) have challenged my ability to enjoy food as I once did.

There was a time when I could take for granted being able to swallow food without incident or to physically feed myself. A few years ago I started to notice more frequent signs that this usually simple process was entering a phase of upheaval. The most alarming symptom would often present itself shortly after I finished dinner.

When I sense a heaviness in my throat at this point I know it to be a telltale signal of what’s about to happen. This typically means that I have a buildup of mucus there. I don’t have the strength to expel this sans some sort of assistance. This comes in the form of CoughAssist and sip-vent devices that increase my flow of air in order to stimulate a cough. I feel this lightens some of the burdens of needing to do this, but it certainly isn’t the most ideal situation.

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With the prospect of these digestion problems looming, I have to be vigilant with what I eat and how it’s prepared. The food has to be cut down to tiny pieces so I can swallow it easily. Spicier foods seem to be a catalyst for mucous buildup, which is disappointing because I’m a fan of Mexican cuisine. Potentially tougher meat dishes, such as steaks and burgers, are not as appealing to me.

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It has also become a hardship to feed myself in some cases. These days I can only really bring the food up to my mouth with plastic silverware. I can get through a meal independently this way, as long as everything is again cut up small. However, fatigue can set in eventually, and I’ll have to be fed the remaining bites. There are several foods I enjoy where this is the only option, including a bowl of cereal or ice cream. To conserve my energy for eating I now have 2 large meals per day.

I often discuss aspects of overall nutrition with my team of specialists. Though I understand they’re trying to help me with it, I’m occasionally taken aback by the tone some of the providers display. When there is an aspect of my diet that they feel I could be lacking in, it’s as if they have an accusatory persona that suggests I should have known about it. 

In my last visit to the hospital, it was indicated that I had a low level of vitamin D, and the doctor sounded perplexed as to why I wasn’t incorporating it into my diet. My dad was in the room and told them that was because we had been advised to do so in the past, to which the specialist replied, “Oh.”

During this same series of appointments I was weighed, and it came out to around 110 pounds. This was a loss of three pounds since my last visit. One doctor appeared to be somewhat disappointed this had happened, while another saw it as a good sign. I still don’t really know exactly what I should be doing right now because of these differences in opinions.

It’s frustrating to have seemingly high expectations from providers. I believe that I’m trying my utmost to stay on top of the various health abnormalities I deal with. When I perceive I’m not doing well enough to manage DMD, I’m more stressed and my self-esteem sinks. If I could offer some advice, I’d say being a little more empathetic would go a long way.

I’m thankful that I can still incorporate positive experiences with food into my life. Last year I had a swallowing test where the initial digestion process is x-rayed, and it indicated there isn’t a cause for concern just yet. So I’ll continue to enjoy my favorite dishes like macaroni and cheese, my dad’s signature lasagna, and decadent cheesecake. My kitchen is not closed.