11 Jun Tips for Navigating Disney with T1D
It’s the amazing and magical—an annual pass. We’ve already headed to Disney with diabetes supplies, Disney themed Halloween costumes for Mickey’s Not So Scary Halloween Party, and matching Christmas sweaters for the park’s holiday party. With more frequent trips, we’re learning how to better navigate Disney with type one diabetes (T1D). We’re sharing our top tips and tricks.
This is our first trip without DAS (Disability Access Service) in several years. On a trip to the first aid station, one of the nurses helping Ellie recommended it. Ellie traditionally battles high blood glucose readings at Disney and other theme parks. On this particular trip, she lost multiple infusion sites (getting one caught on a ride, having the adhesive break down due to heat, etc.). In addition, Florida’s summer temps are hard on insulin, which can break down when exposed to extreme heat. The longer the exposure, the less effective the insulin becomes, which can lead to a loss of blood glucose control over time. DAS allowed Ellie to wait inside between rides and receive a time window at which to return to the ride so that she was not standing in a queue in the heat.
DAS was recently revamped. We’re hearing that some people with T1D receive DAS, and others–like Ellie–are denied. The new system rolled out in late May, and it has a lot of kinks (i.e., consistency in granting DAS access). It was not just the denial after the live video chat, but the entire process that was uncomfortable and not at all like other video chats or encounters with cast members. We’re hopeful that the process will change with time, maybe using third party verification (like info from a physician that we carry for airport security/TSA), basing it on ADA protected classes, or limiting the number of guests that accompany the DAS to three (or immediate family only) rather than large traveling parties.
Full disclosure: We were more successful keeping Ellie’s insulin cool when she used multiple daily injections. We traveled with her insulin vial in a cooler. It was trickier when she transitioned to an insulin pump that was in a cartridge in a device on her person. Although we won’t be waiting for rides indoors, we still have tools and strategies. In fact, they’re more important than ever. Blood sugars can be unpredictable under normal circumstances, so here’s our plan to stay safe and healthy while we maximize the magic.
Beat the heat!
- Keep insulin cool in temps that rival the sun’s surface. Come up with a viable plan for protecting insulin. We use cooling towels to lower Ellie’s body temp and carry her insulin vial for loading her cartridge in a cooler. The Medicool Insulin Protector keeps extra insulin cool and works for us for flights, hot theme parks, and sunny beach days.
- Make sure medical supplies are in a carry on bag. We travel with plenty of non-liquid fast acting carbs (glucose tabs and candy) and extra insulin. For planning and packing purposes, we take double the amount Ellie uses at home.
- If staying at Disney property, there is typically a small fridge in each room of moderate and deluxe resorts. Most value resorts have one, too, but request a refrigerator and tell them that it’s needed for medical supplies. Medically necessary refrigerators are complimentary. Similarly, ask the hotel concierge to freeze ice packs used for medical purposes. Label them with name, cell number, and room number.
- Pack plenty of extra sensor site adhesive/tape. Humidity and perspiration can break down the backing and have caused Ellie to lose good sites. Ellie reinforces her sensor and infusion site on a daily basis.
- Water is a must! Stay hydrated. Carry water bottles, but any Disney quick service restaurant has cups of ice water to go at no charge!
Other T1D management tips…
Allow for adrenaline and activity
- Test frequently. Heat and activity can change insulin needs.
- Disconnect your pump—Certain rides have the potential to tamper with pump and CGM function, although this has not been Ellie’s experience. (Knock wood!) To be on the safe side, some people with T1D opt to disconnect from their pumps while on thrill rides like Tower of Terror, Rockin’ Roller Coaster, Test Track, Tron*, or Cosmic Rewind*.
*These are the only two thrill rides that Ellie consistently rides, and she chooses to suspend delivery as a precaution. It differs by individual, but we discuss the potential for rides to impact the pump’s function and choose a cautious approach. Again, this does not impact everyone but exists as a possibility.
- Add protein. Ellie carries nuts to eat with high carb snacks like donuts. We try to include protein with every meal AND Mickey shaped snack.
- Know where the first aid clinic is located in each park. Also, they will store insulin to keep it cool.
Give yourself grace
- Keep elements of consistency. Be intentional and commit to some best practices (drinking water, testing BG regularly, eating protein at every meal). With travel comes flying, eating out, walking around, trying new foods, and not adhering to any semblance of a normal schedule. (“Rope drop,” anyone?) Choose a few things that anchor your diabetes care and commit to keeping those. Again, we check Ellie’s BG frequently, incorporate protein snacks throughout the day, and drink plenty of water so that we retain key elements of her routine even if most other parts of the day look different. Bring your own snacks! We carry Kind bar minis and nuts. (See “Add protein” under “Allow for adrenaline and activity.”)
- Be okay with asking for what you need and slowing down. (Admittedly, slowing down is hard for us. We get caught up in the magic and momentum.)
- Go in with an understanding of typical BG patterns. The key for Ellie to stay in range is to neither ignore her BG (potentially dangerous) or be hyper-fixated on her readings while in the Disney parks. She knows what her healthy range is and works to keep it in target while still having a good time.
- Set realistic expectations.
Plan meals
- Plan meals ahead and find menus on the My Disney Experience App.
- Disney does not provide nutritional info for many of their restaurants. We’ve used Calorie King and My Fitness Pal, but the carb counts online are not verified by Disney. Without nutrition info from Disney, it can be tricky to get accurate carb counts. We do our best but don’t stress too much about counting every carb, relying instead on corrections from Ellie’s pump or walking to bring down her BG. Many factors impact blood sugar levels: Walking/exercise, excitement/adrenaline, heat, sleep, etc. Carb counting is just one piece.
- Carry fast acting carbs. While there are plenty of kiosks and restaurants, it’s safer to carry carbs in case of long lines, distance to concessions, snack carts that close or move locations, etc. Ellie likes to keep glucose tabs with her meter and other supplies in a Disney Loungefly.
Pack extra supplies
- Put your name and cell phone number on everything.
Take a glance at our past post “Pack It Up: Tips for Traveling with T1D.” It includes a packing checklist to download and customize.
One of the great things about experiencing Disney is that Ellie is simultaneously the teen Star Wars fan who loves thrill rides AND, in my mind’s eye, the toddler who adores Mickey and Minnie. A vacation at Walt Disney World is an amazing experience and should be memorable for all the right reasons. Be safe, have fun, and please drop us a line. Ellie and I are happy to answer questions based on our experience (and to update after her sweet 16 trip)!