My ALS Strategy for National Eat What You Want Day
Like many ALS patients who have swallowing issues, a condition known as dysphagia, I follow a regimen of what I can and cannot eat. I’ve accepted this as my new normal for a number of years now, so my emotional reaction to a friend’s recent social media post caught me by surprise.
Her post said “May 11 is National Eat What You Want Day,” and even though I know it’s just a pseudo-holiday and meant to spawn memes, jokes, and fun food photos, I felt twinges of anger because even if I had wanted to participate, I simply couldn’t. Eat what you want? I wish!
My eating challenges
Dysphagia is scary. One day you’re calmly sipping a coffee, and suddenly the hot liquid is headed straight down into your lungs. If you’re lucky, you’ll experience only a few minutes of gagging, coughing, and gasping for air. If not so lucky, you get to meet your local EMTs.
We patients adjust by changing the consistency of our food and drink by blending it or relying on pre-mixed formulas. In my case, I can still chew and swallow normal foods. But I add a powdered thickener to all my liquids. However, I’m constantly frustrated that some foodstuffs defy modification. And I sure do miss them.
Ask me what I would choose to eat on National Eat What You Want Day and I’d answer a big bowl of ice cream, some hot, buttered popcorn, and, oh, yeah, a beer.
Why these?
Because once it’s in my mouth, ice cream turns into an unswallowable liquid. Because popcorn smells and tastes so good, but I can’t handle those bits and pieces of kernels anymore. And because when I sit down to an enchilada dinner with a side of rice and beans, having to wash it down with a glass of thickened, flavored water is, well, OK. But I remember the old days, when a cold, Mexican beer with a twist of lime made the meal superb. Early on, I found out that thickening powder mixed into beer results in a Mentos and Sprite experiment.
Of course, I’m grateful that I only have to deal with thickening liquids and the loss of a few favorite beverages and snacks. Many patients have totally lost the ability to take in food or drink altogether and rely on a feeding tube surgically implanted into the stomach.
My strategies
I believe the symptom of dysphagia is not only a physical loss, but an emotional one as well. It’s one of the many losses we experience when living with ALS. Taking the time to grieve and process each loss — yes, even for ice cream, popcorn, and beer — is essential to helping me cope with life’s ongoing changes.
What are the steps I follow?
- Name the loss: “I can’t have ______ anymore.”
- Name the feeling: “I’m angry, sad, and feeling excluded.”
- Give permission to feel the emotion: Here’s where I clench my fists and let loose a yell.
- Discuss possible strategies with family, friends, and caregivers: For example, in the column “Meet Me for Dinner! Dining Out with ALS,” I share strategies I use to enjoy dining out with friends despite my eating restrictions.
I won’t let National Eat What You Want Day get me down. Instead, I’ll spend the day laughing at all the funny photos people will be sharing. Learning to process change while maintaining my sense of humor is one more way I’m living well with ALS.
Readers, I’d love to know what you would eat, if you could. Please share it in the comments below.
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, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Bill
With me for now it’s a nice fat juicy burger or Philly cheesesteakthat I miss. My issue is chewing. Also miss just eating and chatting spontaneously. Takes so long and eating and talking don’t mix for me.
Dagmar Munn
I can relate Bill! Isn't it strange how "just when my mouth is full of food, someone asks me a question"?! haha... ahh, the lost art of talking while chewing!
Thanks for sharing your wish-I-could-eat-it food. Take care, best wishes to you :-)
Bill DeMay
It’s funny you mention ice cream turning into unswallowable liquid, opposite for me. Hard for me to manipulate and chew frozen ice cream. Once it melts it’s easy for me. Same disease different muscle problems.
Daniel Mitchell
I love what you write Dagmar. I’m not limited to what I can eat and drink yet. But that day is coming. I would love to eat a big juicy burger with the and all the toppings but alas my hands won’t cooperate. I can try but it wouldn’t be pretty 😀. I do a chin tuck when I’m drinking thin liquids like coffee and water. What thickener do you use? I would rather get a recommendation from someone I know than waste money trying different things. I enjoy eating. I used to be the cook of our house. I loved cooking. That’s why I haven’t lost any weight. I consider myself a fat ALS patient 😀.
Have wonderful day!
Daniel
Dagmar Munn
Daniel, I use the "Thick-It" brand thickener https://thickit.com/. If you try it, give yourself time to find the right amount of scoops that create a liquid you can swallow. I've been using it for 6 years now (I should own stock in the company!) Yes, the chin tuck (and sitting up tall) is the best way to swallow easily. I wrote about swallowing here: https://alsandwellness.blogspot.com/2020/02/when-swallowing-becomes-als-issue.html
Keep on eating and enjoying food - - hope someday someone will fix that burger for you... and stay to help you eat it. BTW - - have you heard of Obi? https://meetobi.com/ It might be helpful for you. Best wishes to you.