Food Prep Creativity To Avoid A Feeding Tube

We have had to focus a lot of time and creativity on food preparation over the years because of Colleen’s swallowing issues. Swallowing is a concern for people with Spinocerebellar Ataxia due to the risk of aspiration. Just as the condition affects other muscles of the body, it also affects the muscles that control the epiglottis which is responsible for closing the entryway to the larynx. When the epiglottis does not work properly, there is a risk of food entering the trachea. Like other muscles in her body, these too will also atrophy, affecting the function of the epiglottis.

Feeding Tube Is A No-Go

Colleen has visited several neurologists over the years, most of them ordering swallow studies. The last Dr. Colleen saw in Madison suggested that Colleen consider a feeding tube. Colleen may be non-verbal, but her facial expression told us everything we needed to know – It Ain’t Gonna Happen! She was still eating solid food, and she was going to continue until she absolutely was no longer able to. She was getting food stuck in her throat, so we had to find a better way to prepare her food. What we have learned is that the consistency of her food is essential. Anything too thin or too thick is difficult to swallow. Pieces of meat too large, too tough, or vegetables too fibrous are an issue. On and on, the list goes.

Time To Get Creative

At first,, we made protein smoothies with fruit and put them into pouches, making them easy to swallow. This worked, but Colleen’s diet was pretty dull. We then migrated to blending regular meals. This, too, worked, but her meal resembled gruel from the Charles Dickens classic, Oliver Twist. When her food was chopped up into small enough bite-size pieces and the consistency was right, she could eat solid food. When we were living in our house, we had this down to a science. However, when we got out on the road, it was a different story.

I had to find a way to prepare her food while living this new lifestyle. For the first few weeks, we had to rely on frozen dinners. As sick of the food as Colleen was getting, she realized it was her only option at this point. She loves mac and cheese. I was preparing the dish so much, she was forced to put a moratorium on it for a solid 6 months.

When we started traveling, I had 100 other things I had to consider as well as Colleen’s food. Around this time, in my cleverest of minds, I realized that Bugles’ snack food makes a perfect thickening agent if you crush them up. This was perfect! I figured I could buy canned soups and stews and thicken them up with Bugles. Once again, Colleen brought the gauntlet down on this program after a while.

Put That Blender Away!

When we eat out at restaurants, we would find meals that could be prepared for her to eat. Some restaurants would cut it up for us, some we had to do it ourselves. One story has to be told that shows Colleen still has that fire.

One night we stopped at a Mexican restaurant. I believe we were in New Mexico at the time. When I explained our situation to the waitress, she asked if blending the food would be ok. I thought this would be a grand idea. By this time, memories of the gruel that I prepared back in Wisconsin were far from my mind. Colleen was agitated during the whole dinner. It was not until we got back to the rig that I learned about the problem. She sent me a message that said, “MY FOOD IS NOT BLENDED AT HOME, SO I DO NOT WANT MY FOOD BLENDED AT A RESTAURANT.” – messagereceived. That was the last time her food was put in a blender.

The Instant Pot Was A Blessing From Above

We developed different meals and cooking methods that helped us along the way. Then the day came that changed everything in the name of food. We purchased an Instant Pot. When we discovered this gem, you would have thought we found an entirely new food source (well, this was actually the case). Suddenly, we were able to prepare healthy, nutritious meals in a matter of minutes that would have otherwise taken hours.

Since the cooking is done under pressure, meat comes out incredibly tender and vegetables soft without being too mushy. Now that we are out on the road again, we have developed a sound system. Colleen researches recipes for me to make. Before we head out for the day, we get dinner made, which is done by the time we get home at night. As good as the system is, sometimes I feel the need to “improve” the recipes. Colleen does not always appreciate the artistic liberties that I take.

Preparing meals used to be one of those daily routines we took for granted. Today it is quite an event. Just like many things in our life, food preparation will be something we will need to continue to adapt to. The day may come that she will need a feeding tube. Until that day comes, I will continue to be creative so I can get that coveted thumbs up and tummy rub after a meal showing me her approval.