Eating is a constant evolution as the disease symptoms progress. At first there were no challenges.
Utensils: The first symptom impact was his dexterity so we got some large handled utensils, just normal ones with big plastic handles. Then some special ones. He didn’t have much of a tremor so he didn’t like the weighted handles. What he uses most of the time is a spoon with a large plastic handle and a bend at the neck. The bend allows him to get the spoon in his mouth without flexing his wrist. I bought everything on Amazon. There is an organization in the next big city (Tampa) that has all the items you could think of that you can try at their offices. Then you buy online. It would have saved me some wasted experiments in things he never ended up using.
Plates: The next problem was in getting the food onto the utensil. With a plate, he often ended up pushing the food right off the edge. We now exclusively use big flat bowls instead of plates. We happen to have them as part of a set of fine china. I’ve seen plate guards that you put on regular plates but we haven’t needed them as yet. I also have some divided plastic plates that work well and go in the microwave.
Messiness: As his dexterity got worse, so did his tendency to drop food on his chest. I started protecting his clothes with a dish towel tucked into his neck. One of the clever ladies in a support group I occasionally attend started making dining scarves as a fundraiser for the Neuro Challenge Foundation. I bought three and use them all the time. Someone else suggested an apron helps not only with mess on the chest but mess on the lap.
Choking: Two years ago he had is first major choking episode. We had guests for dinner and were eating steak. He was still breathing but coughing, gagging, and drooling. We called 911 and when they came they gave him some injection that relaxed his windpipe. He was fine by the time he got to the hospital.
We stopped eating steak and started cutting things into smaller pieces. He also started taking his pills with applesauce rather than water.
His next serious choking episode, he passed out. He was sitting at the dinner table kind of gasping for air, I tried the Heimlich maneuver with no success, asked if I should call 911. He said no and promptly passed out and started turning blue. The dispatcher on 911 instructed me how to pull him to the floor and start chest compressions. He started breathing on his own just as the ambulance pulled in the driveway. When we got him up walking around he coughed up what had caused the problem – a tiny grain of couscous. The speech therapist said the presence of that tiny grain caused the throat to go into spasm.
She gave us instructions. No food that had tiny pieces or could break into tiny pieces. No popcorn, rice, couscous. No mixed texture foods, like chicken vegetable soup. For those, she suggested, separate them. So we put the broth in a mug with a straw and gave him the meat and veges in a bowl. Someone else suggested topping foods with something to help them slide down, like sour cream, or applesauce, or gravy.
Exercises to Prevent Choking: The speech therapist explained the muscles and mechanics involved in swallowing and gave us exercises to help with swallowing in addition to speech. We do them together every day. He hasn’t had any major choking episodes with eating. Now it’s his own saliva or phlegm that is a different choking/breathing problem.
Mechanics of Eating: Now his problem is moving food around his mouth. It started with bites getting stuck in the roof of his mouth. A chunk of chicken or a piece of carrot. I would have to put my finger in and move it between his teeth. We went to smaller pieces. Softer cooked veges.
Recently he even has trouble with something like a banana, which he needs to eat daily for the potassium since he is on Furosemide for foot and leg swelling. He doesn’t like things pureed so I cut it really small and put it in his daily yogurt.
I don’t worry too much about a balanced diet anymore, except for making sure he has enough fiber from fruits and vegetables, in addition to a Benefiber type additive to prevent or at least mitigate constipation as his systems slow down. Some days, if he hasn’t eaten much, I’ll make a shake of Ensure and ice cream. I mean, really, he’s not going to die of malnutrition, that’s for sure.
When we go out to eat, far less than we used to, we try to be careful about what he orders. Meatloaf works. Mashed potatoes. Crab cakes. That sort of food.
What’s particularly sad is that he loved to cook and was a fabulous cook. I hate to cook, hate to prepare food. Now I think about it a lot. What will work? What can I make that we’ll both like. Because I have to eat and I’m sure not making two meals.
I also keep a blender out on the counter now. And we have a small electric chopper a friend bought after visiting and seeing me cut things so tiny.
I could go to all pureed food, or baby food. But he likes to eat and chooses to take the risk rather than eating mush. It’s his decision. If he dies a few months earlier eating what he enjoys, rather than putting up with unpleasant food, that’s his choice. I can live with it.
I just ordered a cookbook I found out about on an MSA Facebook discussion group for people with chewing problems: Soft Foods for Easier Eating Cookbook: Easy-to-Follow Recipes for People Who Have Chewing and Swallowing Problems