getting back on course

We told you that we would talk about it later, and later is today!

Mo and I are both foodies. When we travel we make a point to dine at upscale and celebrity chef restaurants and eateries. We are even planning travel just FOR a dining experience (assuming we are ever able to secure reservations, we’ll see you someday French Laundry!). So it was difficult for both of us when Mo’s dysphagia started and continued to worsen. When Mo’s swallowing was at its worst we stopped going out to eat altogether. It just wasn’t enjoyable for us. By the time Mo was finishing his first course, I’d easily be finishing the second. Not only was there the extra time it took him to eat, there was also the embarrassment of gagging/coughing and the frustration of dealing with wait staff that clearly wanted to flip our table. We were off course in more ways than one.

Eating is a hugely social activity and when you have dysphagia it can be extremely stressful and isolating. During the holidays this is even more prominent, and a topic that comes up frequently with our group. Here are some resources we’ve found that offer some great suggestions for dining with dysphagia:

Click here for tips for talking about dysphagia with your family and friends.

Click here for a guide to eating with dysphagia, it references Huntington’s disease but I think a lot of it applies to myositis too.

Here is a list of our own suggestions for eating out when swallowing is a problem:

  1. Speak up! Don’t be shy in letting the wait staff know that you have swallowing problems that need some special attention. Restaurants are becoming increasingly supportive of special diet requirements like gluten-free and low-calorie options, so luckily most wait staff will have experience dealing with special requests. Don’t be embarrassed, they can’t help you if they don’t know you need help.
  2. Be truthful. We are all about empowerment, and power comes from living in the truth. If you are having a bad day and don’t feel up to going to eat in a restaurant let your dining companions know. Your loved ones will understand. They want what is best for you. Reschedule for later, or make a dinner date for home.
  3. Plan. Plan. Plan. Did I mention you should have a plan? Most chain restaurants have their menus available online, decide what you’d like to eat before even getting to the restaurant! When the wait staff comes to the table to take drink orders, place your order first. Let your waiter know that it takes longer for you to eat so you want your food delivered right away. This’ll give you a head start, as your food will usually come out about 10 minutes before your friend’s food. Neat trick, huh?
  4. Take it easy. Don’t try to rush through your meal to “keep up” with other diners. Pretend you are in a Parisian bistro. Lunch SHOULD take two or three hours! A meal is more than the food you eat, it is the company you keep. That being said, make sure you go out to eat with people you really want to spend time with. Don’t bring a bore (you’ll need someone to keep the mood light), but also don’t bring along a comedian (laughing+eating = a huge choking hazard!).
  5. Skip the rush. Do yourself, and the restaurant, a favor and skip the busiest times of day. Lunch and dinner rushes put added stress on the staff, and they’ll be looking to flip your table to accommodate other waiting guests. Embrace the idea of “brunch” and “linner”. Also, make sure wait staff (including bussers) know NOT to remove any of your dishes until you request so – they may mistake uneaten food for unwanted food.
  6. Split the check. I don’t mean going dutch, I mean splitting up your items into more realistic portions. We all know that restaurant portions are out of control, but when you have dysphagia the portions are downright daunting. With dysphagia by the time you are halfway through your food the other half is cold and unappetizing. So ask your wait staff to split your portion in two. Half for now, half for twenty minutes from now (or whenever). For some items this can’t be done, but for soups, pastas, and side dishes it is easy for the chef and waiter to divide your portion to deliver hot and tasty food. If it turns out you don’t want or can’t eat the second portion, just ask them to box it up for you!
  7. Extra! Extra! Ask for extra napkins from the get-go, or bring some with you to the restaurant. There WILL be some foods that catch you by surprise that you may need to spit out. We ask for extra napkins all the time now with our messy 3-year-old, and having the extra supplies on hand ahead of time is crucial. Then you don’t have to “wait for the waiter” in case things go south (or don’t go south in this case).
  8. Skip the ice. A tall drink of water can help you clear stuck food, but the last thing you need is a sneaky ice-cube causing more choking if you are already in a fit. You can also use the room temperature water to thin foods that are too thick to swallow as-is.
  9. Dress for success. You might be at the restaurant a while, so make sure you are wearing comfortable clothing. We would also take extra cushioning for Mo’s wheelchair to make the experience less achy and stiff. If you do have issues with food falling out of your mouth, bring along a decorative bib like these (click here) or a crab bib like this (click here  – I really like this one since it describes Mo’s occasional mood dining out, bonus it’s washable!).
  10. Safety first. As our last tip, please make sure you and everyone with you is aware that choking is a real hazard and a real possibility. At least one person at the table needs to know how to perform the Heimlich maneuver (that includes you!).



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