My Cuisine Adventures While Living with ALS

My Cuisine Adventures While Living with ALS
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Recently, my husband and I experienced a staycation of sorts — we dined on two weeks of gourmet meals without leaving our home. Although it gave my husband-caregiver a much-needed break from meal preparations and was a nice change of pace for both of us, we wouldn’t do it again. Why? My reasons might surprise you.

The backstory

In our marriage, I’ve always been in charge of the kitchen. Although I never aimed to be the world’s greatest cook, I did enjoy buying and preparing our meals. Unfortunately, shortly after the onset of my ALS, I relinquished the entire job to my husband. My symptoms made standing and maneuvering around the kitchen risky. Plus, carrying anything of weight was impossible.

But remembering my husband’s bachelor-period cooking fails — like the time he made spaghetti, didn’t have a strainer handy to drain the noodles, and used a tennis racket instead — I made sure we reviewed more than a few kitchen basics!

Luckily, we share a preference for plain, simple meals, so the transition had very few hiccups. And for the next 10 years, we settled into a rotation of favorite weekly dinners, rounded out by an occasional takeout night, plus a weekend of dining at a local eatery.

Even with the onset of stay-at-home mandates and local restaurants closing, we did OK. But I’ll admit that weeks and weeks of plain, simple meals became, well, boring. They were drag-your-knuckles-on-the-floor boring.

An offer we couldn’t refuse

My husband spotted it first. An online “newcomer special discount” for two weeks of gourmet quality, pre-cooked meals, delivered right to our door. The price was right, and we reasoned that it would give my husband a break from kitchen duties. Plus, with Arizona summer temperatures hovering at 100 degrees, we relished the opportunity to stay inside and eat as if we were at a fancy restaurant.

The fun began when I used the company’s mobile app to track the route and status of our order. I marveled that our gourmet meals were being created some 175 miles away and would arrive in only 24 hours.

When the 16-pound box arrived, we dug through the layers of dry ice and insulation to find six individual trays containing our dinners. Just three minutes in the microwave, peel back the transparent plastic cover, and Ta-da! Dinner!

Mixed reviews

The meals were unique, filling, and healthy, although they were seasoned with way more herbs and spices than we were used to. Cleanup was easy — just toss away the tray. Color my husband happy.

We went online and picked our meals for the second week. This time, I was careful to read the ingredient descriptions. From the first round, I learned their version of mashed potatoes was really mashed cauliflower. The “zoodles” in my Italian meatball selection weren’t made from angel hair pasta, but rather long strips of crunchy zucchini. Must be my Midwestern roots, but I wasn’t ready for “zoodles.” We made our selections and crossed our fingers.

That’s when I was hit with a case of “environmental guilt.” I thought of our 16-pound box of dry ice and filler, the trucks needed to travel 175 miles, and our food arriving in little plastic trays. The potential negative carbon footprint was humbling.

By the end of week two, the novelty had certainly worn off and we were ready for our staycation to end. I’m grateful for the experience and glad to know meal options are out there.

I hit the “cancel subscription” button.

My husband’s sloppy Joes, with a side of Doritos, were looking pretty good again!

Always be flexible, always be open to trying new things, and try to live well while living with ALS.

***

Note: ALS 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 ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

When Dagmar was diagnosed with ALS at the age of 59 in 2010, she tapped into her nearly 30 years of professional experience. She not only follows her own wellness and fitness advice but also inspires and teaches others to do the same. Dagmar is a patient columnist at BioNews, writing “Living Well with ALS.” In addition, she is one of the moderators for the ALS News Today Forum and writes a personal blog called “ALS and Wellness.” She lives in Arizona, enjoying finding humor in life’s situations, and spends her free time pursuing creative projects in fiber arts.
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When Dagmar was diagnosed with ALS at the age of 59 in 2010, she tapped into her nearly 30 years of professional experience. She not only follows her own wellness and fitness advice but also inspires and teaches others to do the same. Dagmar is a patient columnist at BioNews, writing “Living Well with ALS.” In addition, she is one of the moderators for the ALS News Today Forum and writes a personal blog called “ALS and Wellness.” She lives in Arizona, enjoying finding humor in life’s situations, and spends her free time pursuing creative projects in fiber arts.

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3 comments

  1. Diana Belland says:

    I’m so glad I could start my day reading your column this morning, Dagmar! I’m still chuckling over the image of your husband using a tennis racket as a spaghetti strainer!
    My husband does all the cooking in our household, too, and while his meals are nourishing, his repertoire is pretty limited.
    For Father’s Day our daughters gifted him with a week’s supply of meals from a service like the one you describe. We enjoyed the meals so much (I was delighted to find my appetite returning) that they placed another order for his birthday (July 1). Fortunately, the meals are prepared and shipped from a location which is only 20 minutes away from our home which somewhat lessens my concern about our carbon footprint, and I’m trusting that my husband is responsibly recycling those plastic trays. We still have our Shake ‘n Bake pork chop and scalloped potatoes nights but I’m so glad to have this alternative!

  2. Pauline Milan says:

    My husband has Bulbar ALS with Frontal Lobe involvement. He has great difficulty swallowing and at this point cannot talk at all. His tongue is completely paralyzed. His neurologist has recommended a feeding tube but he refuses, so the nutritionist said he has to somehow consume 1800 calories per day. This is accomplished with a combination of Sheppard’s Pie (the only thing he can get down without choking or throwing up) with Benecalorie supplement added and throughout the day he drinks Boost Very High Calorie Nutrition drinks (650 cal each).

    He knows to dip his chin when swallowing and not to try to talk while eating.

    Has anyone out there had similar experiences and I would welcome any suggestions. Mealtimes for him are a lengthy arduous process.

    To date he lost lost 50 pounds.

    • Dagmar says:

      Pauline, I am so sorry that your husband is experiencing problems swallowing – – ALS challenges us in so many ways.

      You should continue your discussions with the neurologist (and an ALS dietician). Maintaining caloric needs by mouth with limited food options usually points to a feeding tube. Here is a video made by my fellow columnist Kristen Neva, whose husband had to make the decision regarding a feeding tube: https://youtu.be/BHf0N0Bup1Q

      Best wishes to you both.

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