EDITORIAL: Visiting Walt Disney World with Myasthenia Gravis – Tips For Guests With Disabilities
Hey there, WDWNT listeners and readers! Scott Smith here. Remember me? I certainly haven’t been around for a while, and I’ll tell you why.
Recently, I’ve had some pretty severe medical issues. A tumor developed on my thymus gland, necessitating surgery to get it out. Although the operation went well, the tumor led to me developing a neuro-muscular auto immune disease called Myasthenia Gravis. What is Myasthenia Gravis? Well the name literally means “grave muscle weakness.” It leads to certain muscles not working properly; including speech, swallowing, eyelids, and even limbs. In some severe cases, it could affect the breathing muscles as well. Relatively speaking, I’ve been lucky enough that my disease hasn’t touched my lungs and while I do have weakness in my arms and legs, I’m still mobile. My trouble mostly focuses on my neck up, what with trouble swallowing, one of my eyes drooping, and an inability to speak clearly. Thankfully, due to the surgery and medication, I’m on the road to controlling the symptoms and I am on the road to a somewhat normal life.
What does normal life mean for someone like me? The same it means for many of you, dear audience, and that is Disney Parks. I made it through months in the hospital, a hard recovery, and it was time to get to my home away from home and enjoy life. But what would Disney World be like with Myasthenia? I didn’t know. It’s a rare disease, with not a lot of information on it. So, I’m here to share what I’ve learned. I’m sure much of these tips and tricks can be applied to other diseases and conditions, but here are the things I’ve picked up to make sure your time at Disney World is as magical as it should be, with no disease keeping you down.
1. Rest! You need it, and it’s not a bad thing.
In my younger days, I wanted to open and close these parks and do everything I could do from one corner to another. Unfortunately, that is not the case anymore. Going to Disney World is a lot more work then you might think, with a lot of ground to cover. Basically, there’s a great deal of walking and traveling involved, even with all the transportation Disney offers to and around the parks. Add to that a neuro-muscular disease, and it adds up to one realization––you need to rest.
If you’re going to get up and rope drop a park, you’re going to find yourself exhausted by midday. Some people might be okay sitting on a bench for an hour or so, but living with Myasthenia means I needed a full on nap before the second half of the day. I could feel my younger self screaming in shame at me, but it couldn’t be helped. If I wanted to enjoy that Magic Kingdom dessert party, I had to leave Hollywood Studios early to nap. That’s my life now, and this is the body I must live with. And that’s ok.
A two-hour nap in the room or by the pool is a small price to pay to keep the batteries charged for the next magical experience. I know it’s tempting to go full-on at the parks, with so much to do, it goes into an almost overload, but trust me when I say a small Disney nap can make sure you enjoy your time to the fullest. Conversely, consider getting a later start to the day. Accept the fact you’ll be waiting for some rides, and sleep in. That works too, and then you don’t have to deal with the morning security/ticket line crunch. Point is, your body can’t handle all day marathons anymore, and that’s alright. A little rest and you’ll be good to go.
2. Use the DAS (Disability Access Service) Pass
If you don’t know, this stands for Disability Access Service pass. Another thing I had to come to grips with now is that I am, in fact, a person with a disability now. I don’t, and you may not, wear it on your sleeve, but it’s the truth. The Myasthenia Gravis means, like I mentioned in the first tip, I can’t go-go-go in the parks like I could, or wait in a two-hour line for Slinky Dog Dash.
This pass is super easy to get. You go to Guest Services on the first day in the parks, they take your photo, and hook it up to your MagicBand. Then, you go to a helpful Cast Member at the FastPass+ entrance and they give you a return time based on the stand-by wait time. No fuss, no muss. It’s not like you’re cheating the system, either. Sure, you’re sitting on a bench with a frozen Coke, but you’re still waiting the same amount of time to ride.
The DAS pass shows up on the app too, so its easy to keep track of, and you only get one at a time, so it’s very fair. I can’t stress enough how the DAS helped my wife and I enjoy our favorite attractions my disease might have kept me away from. 90 minutes in the Slinky Dog Dash queue might have had a serious toll on me. The DAS pass spared me the standing in the sun and let me save my energy for the rest of the day. It’s an invaluable tool to visiting WDW with a disease like Myasthenia Gravis.
3. Eat often, but eat right!
Part of Myasthenia Gravis causes muscle weakness for simple tasks like swallowing and chewing, for me especially. Some days I’ll be normal while other days will be a struggle to eat. But beyond that, I have to learn and adjust what kinds of food tire out the muscles in my jaws and mouth. But this is easier said then done, especially in Disney World. After all, WDW is brimming with delicious food and aside from rest, eating is necessary to keep the energy up. So, do not be afraid to stop and take breaks for meals, as not only do you rest your body, but you restore your batteries. However, stay away from foods that are too chewy or sticky. Here’s just one example: The ravioli at Enzo’s Hideaway. The pasta incasing the filling was very sticky and thick, tiring out my tongue and leaving me unable to finish my meal. Conversely, everything at Yak and Yeti was soft and juicy and delicious, the best food I had all week. The meat was so tender, it offered no resistance.
As you come to terms with your disease as I am, you’ll learn where and what is the best choices for refueling. Sometimes, adjustments need to be made. For example; I ordered the pulled pork sandwich from Caribbean Beach food court. Upon receiving it, the bread was way too thick. But simply eating the meat and slaw from the bread left me with a fine meal I was able to enjoy. At San Angel Inn, trying the tortilla shell and putting all the fixings together was not working out. Avoiding the shell, I was able to enjoy my dinner by eating each piece separately. So, in conclusion, make sure you eat, but avoid thick, chewy, and sticky fare.
4. Allow Enough Time
This one is simple, and goes back to making sure you rest and eat. Some people are marathoners, going to four parks in one day. That’s not you, and not me anymore. As much as I’d love to crawl all over property and hit my highlights, trying to cram too much into a short amount of time will just burn out the body.
You might be tempted to head to WDW for only two days, fitting it into a short weekend to get your Disney fix. But is that the best idea? Living with Myasthenia Gravis, I can’t travel as quickly or as far at a time anymore. Factoring all that in, what will I be able to do in the time I gave myself? Will I have to sacrifice a ride or two, or perhaps a favorite restaurant? The solution to this is to save up your time and make sure you can do everything properly. What I did this last trip was one park a day, so even if it wasn’t jam-packed (I’m looking at you, Hollywood Studios,) I could still make sure I did everything I wanted.
I know it’s not always possible with work and life to get a whole week off, but I truly believe you’ll have a happier and more magical trip if you plan for longer and make sure you have time to fit everything in without taxing your body.
So there you have it, a few tips I learned while heading to Disney with my condition. Do you have a similar condition? Any readers out there with Myasthenia Gravis? Feel free to contact me and share any helpful information of your own. But in the meantime, I hope I’ve been able to help.