My Cuisine Adventures While Living with ALS

Dagmar Munn avatar

by Dagmar Munn |

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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.

***

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Comments

Diana Belland avatar

Diana Belland

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!

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Pauline Milan avatar

Pauline Milan

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.

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Dagmar Munn avatar

Dagmar Munn

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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jerry avatar

jerry

Hi Pauline, my wife has ALS and is also struggling with swallowing.She ate less and less until she was only 38 kilos. She did not want to have a peg tube. I had to do a lot of convincing and she caved and we had Peg tube installed within 2 days.Now she is so happy because in one month she has picked up 4 kilos and now she can eat only the things that she want to and I put all the other food through the tube for her.
It is a fact that pals with more weight survives the longest

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Carol Timm avatar

Carol Timm

Wow! Lucky you guys, I go through food frenzies every afternoon. I am not hungry but my mind is smelling my old favorites. I was still being tested and prodded when my husband found he was performing the hemlock maneuver several times a day then the summoning of ambulance because he could clear my airway, I had lost 35 pounds by then and finally agreed to a feeding tube.. this was 3 years ago. Finally diagnosis of Bulbar ALS. Medical team always excited I will live longer with Bulbar, ya right can’t talk can't eat 2 very favorite pastimes of old, especially talking.

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Blane avatar

Blane

If you have a local coop that delivers meal kits, that can be a good way to go. We had a local coop that specialized in organic foods and delivered. One of the biggest benefits for me is that it made it much easier to decide what to make for dinner. In addition I could control spices, etc. It's also easier to chop food into smaller pieces before cooking than after.

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