Jeremy has always loved food - eating, cooking, and trying new things. He loves a good steak, as well as fresh seafood, and he can whip up an amazing meal without looking at a recipe. The one thing he hates is onions. Unfortunately on his first visit to our house we had quesadillas with chicken and onions. He managed to get through the meal without gagging - I’m not sure how.
Jess, on the other hand, has severe food allergies, including nuts, seafood, and beef. So they eventually settled into a dinner routine including lots of chicken and pasta.
For the past few months, I have been in charge of planning and making dinners. Jeremy’s hands are now curled and stiff, and he can’t lift heavy pots or strain hot pasta. He needs to try to maintain his weight, and he has trouble with foods that are too dry, too watery, or too creamy. Plus he won’t eat anything green. It’s a challenge.
ALS causes constant muscle twitching (fasciculations) because the nerves keep trying, ineffectually, to stimulate the muscles. This results in a huge output of energy - and significant weight loss. To combat this, he has a combination of ice cream and super high calorie powder (770 calories!) every night. Still, his arms and legs are thinner and thinner.
A week ago he told Jess that it might be time for a feeding tube. This is a huge concession. His doctors are now trying to schedule the procedure before the end of the year.
This will be a big adjustment. He will still be able to eat by mouth, but there will be daily maintenance and a learning curve for feeding/hydrating via the tube. Plus the very fact that he needs the tube is an indication of how quickly his condition has changed.
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