Sharing my changing tips for dining out with ALS, and my slips as well

Six years ago, I was a new patient columnist for ALS News Today and wrote a column about how planning ahead helps me dine out with ease. But since that time, my ALS has evolved — and so have my plans.

Instead of a rollator, I now find it more convenient to use a mobility scooter for restaurant dining. And my dysphagia, or trouble swallowing, has forced me to invent new plans altogether.

So it’s high time I share a few updates and the lessons I’ve learned since then.

Powder, powder, everywhere

With my dysphagia, I can still chew and swallow normal foods, but I add a powdered thickener to all my liquids. At home, that’s easy to do, but dining out has required a different strategy. My plan involved ordering a beverage off the menu and thickening it right there.

I filled a repurposed pill bottle with about three scoops of powder and put it in my purse. At the restaurant, however, the first issue I encountered was the size of the beverage. Asking for a small glass of something didn’t compute with most waitstaff. Restaurants nowadays seem to serve drinks only in oversized glasses, and when a small glass of juice finally did show up, it was packed full of ice! The answer seemed to be to order a cup of coffee.

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That worked until I noticed that my procedure for thickening my coffee drew the attention not only of the people at our table, but also those at nearby tables. Suddenly, I felt like they saw me as an ALS Benihana chef!

My strategy finally fell apart the night I opened my purse and, thanks to a faulty lid on the pill bottle, the bottom of the purse was coated with my precious powder.

I’ve since followed the simple (and much more logical) method of bringing my premixed drink in a kid-sized sports bottle with a built-in straw. The bottle is small and inconspicuous, and the restaurant staff doesn’t mind at all.

Check ahead for accessibility

One thing that hasn’t changed is doing a full-scale reconnaissance of new restaurants we want to visit. These days, just about every establishment has a website or at least a Facebook page. I can examine the menu and photos of the building’s entrance and dining room to help me determine if my mobility scooter can be accommodated. Rooms with wide aisles are always appreciated.

But there was one instance when it didn’t quite work out.

We were meeting up for dinner with a group of friends, and the hostess led us to a table in the rear of what looked like a near-empty dining room. “It’s more private here,” she explained.

As the evening progressed and the room filled up, I could see my path out was now an obstacle course of chairs, serving trays, and coats. When we finally left, I carefully scootered through as each diner in my way had to stand to let me pass. All I could do was make light of the moment and give everyone the queen’s wave.

Which brings up the time of day. My husband and I have learned to embrace eating what we call “late lunch, early dinner” hours. These are low-volume hours for most restaurants. Not only do we have a choice of seating near the entrance with room for my scooter to maneuver, but also the waitstaff isn’t as rushed.

Dining out gives me the opportunity to be among people, soak up the atmosphere, and see new things. It’s practicing another one of my ALS strategies: showing up.

Remember, successful dining out takes a little preplanning, the help of your support team, and a good sense of humor. Now it’s your turn. I’d love to read your tips, so please share in the comments below.

Bon appetít!

Let’s keep helping each other learn to live well while living with ALS.

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.