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.
I was intrigued by this article. Although not affected by this disease I do hope that this article sheds some light for people with disabilities that are preparing to visit the parks. As a parent of an autistic child aged 2.5, my wife and I are eager to get him to Disney, however we know we are unprepared. It would be fantastic for WDWNT to reach out to individuals with disabilities to spotlight visiting the parks and how to prepare, cope, and enjoy the best there is to offer.
Greg, the DAS pass will be the biggest help for sure! Apart from that, staying as close as possible to the MK or being prepared to pay for a minnie van so that transfers aren’t stressful/hectic on buses is another big one. (If your son loves boats, we loved staying at DWL or FW, otherwise monorail maybe). Staying as close to his normal sleep/wake schedule might mean missing some late night offerings, but will turn out better in the end, ie.less meltdowns! If mornings are best, splurge for early morning magic tickets so crowds are less and you can go nap or swim midday! Coping with sensory issues are possible while there. Baby care centers have “quieter” rooms with tv/Disney Jr and rooms with rocking chairs, although I wish they were all more centrally located, best is at EPCOT as it’s near the odyssey. I have a pair of child-sized noise reducing headphones that work well during fireworks (bought off Amazon). Bringing familiar snacks for him but also knowing and ordering ahead what he likes to eat via the mobile ordering on the app saves so much frustration. Also bringing a grandparent or someone along to help can give you guys a much needed night out together. Finally, not stressing to fit it all in but do what he loves is most important because you will be back in the future to do the rest! I hope this helps you put your mind at ease some!
This post is such a blessing to read. I was diagnosed with a very rare benign but very aggressive brain tumor in December. It rests on and around a nerve causing right sided vocal cord paralysis. I’m being treated at Mayo. Swallowing is a challenge as is breathing. My meds cause extreme exhaustion. My daughter & I have been going to Disney every year for 9 years. My trip is booked for year 10 in September and I’ve been so worried I would not be able to do it. Thank you so much for this helpful information. And prayers for your complete recovery or remission. Life looks different but it’s still awesome!!!
Nice article! Nice to see you rocking’ your way back, and taking charge.
I have MG. I was diagnosed in 2006. I’m in remission now but still have my days. I currently work for WDW. It was nice to see someone post about this. Maybe consider posting it to the MGFA Facebook page if you can?
I have a family member who has severe physical and cognitive disabilities, and we are planning a trip to WDW next year. The new stroller restrictions had me extremely worried, because we used a special needs stroller as a wheelchair, as our family member has had several back and spine surgeries, and can’t use a traditional wheelchair, we always register stroller as a wheelchair and get a guest disability pass at Disneyland. I looked up the dimensions of the stroller brand, Liberty Mobility, and it totally fits in the parameters, I think the oversized double strollers (like BOB brand) are now too big. I was worried about obtaining the pass since Disneyland has been so easy and accommodating. It is nice to know WDW should be the same.
Hi Scott!
As a fellow Myasthenic, Disney lover and local, I wanted to say a word of encouragement. I’ve been diagnosed a long time and I go as much as I can to Disney. It’s quite the disease to adjust to, but I hope it’s a gentle ride. And if you ever need support or community, please don’t hesitate to reach out!
Blessings,
Rebekah
I applaud you for living your life to the fullest while managing your disease. I am a cancer survivor after having a stem cell transplant as well as Car-T cell therapy. My first trips back to my Magical place were tough with my husband pushing me in a wheel chair with hand sanitizers as a must due to a low immune system. The DAS pass is a great option before you start to experience your body telling you it is done for the day and can’t stand in another long line. I am blessed to say I’m going on three years clean and I now can walk, not fast, around the parks with my walking stick for balance but also neuropathy in my feet due to chemo. I do utilize handicap entrances for rides that have stairs. The cast members are always friendly to help. Thank you for sharing your story.
So happy to read this article. We took a family trip last year with all 10 of our grandchildren and their parents after my husband was diagnosed with End Stage Renal Disease and had been on dialysis for 6 months at that point. It did not go well for us but the rest of the family had a good time. Wish we had an article like this last year. However, we are taking what we learned from the experience and returning this year more prepared but with an additional diagnosis of Stage 4 RCC. Even with the extra issues we will be dealing with we are taking it slow. We added on extra days to compensate for dialysis and rest times. We also got an annual pass so we wouldn’t feel pressured that we had to “do it all” this trip. If you had to choose what to do this trip and what to do the next trip, what criteria would you use? How does Disney compensate for people that struggle to step down or stand up for rides such as Pirates of the Carribean? Is there accessibility? I would love to see more articles addressing these issues and maybe recommending ways to adjust.
This article was very interesting to read because in December I was diagnosed with Congenital Myasthenic Syndrome, which is the same as Myasthenia Gravis, except MG is autoimmune, and CMS is inherited with defective genes. I suffer the same problems that you do, except I have for my entire life. I am 24, so it’s been a life long struggle with therapy, and nerve surgeries. You must keep fighting, but keep your head up, life is good.
Wonderful tips! I too pray for your continued good health and as a physician, I commend you for listening to your body and knowing when you need to take it easy. I would add to your list, don’t be afraid to rent a scooter! My MIL was between hip replacements when she came with us and the scooter made all the difference for her, the pain was significantly less every night than if she had walked 8 miles a day with us. Disney is very accommodating to those in wheelchairs or scooters, esp in the newer queues, you can take them right in. Only in a few did she have to transfer to a wheelchair in order to queue (I recall pirates mainly). Never did any cast member ask her why she needed one; it was never questioned, even at universal! Don’t worry about any stigma that comes along with a motorized chair, if you need one to enjoy your trip to the fullest, don’t hesitate to rent one!
Wow! Thanks for this! I have MG too. I was diagnosed 4 years ago, and I’ve spent a good amount of time hospitalized too (on a ventilator at one point so I guess my MG falls under the ‘severe cases’ description). Going to the parks is something I dream of doing one day as a lifelong Disney fan. I wonder if you have any tips for keeping cool in the park. Heat can be a big problem people with MG.
I have MG and cooling towels help me in the day time, you can get free ice water at any quick service reataurant.
Good tip! Thanks!
I have had MG for 12+ years. My daughter and her husband moved to Orlando early last year and work at WDW. I have been twice, last June and October. It’s better to go when it’s not too hot, but otherwise I was able to navigate the parks normally. They left it up to me to decide when to rest and although I was tired at the end of each day, I was able to do four parks in June and three in October without any major MG symptoms. I’m going again next week and really looking forward to it.
This is an articulate and thoughtful article. Thank you for posting it.
I also have MG and am an avid Disney fan. I am fine doing the parks until I am no longer fine. Key is knowing my limits and resting periodically. I have found having a rollator with me is a plus so I can sit wherever I need to and not have to hunt for a seat when I’m already feeling and walking wonky. It is difficult to have an invisible disease and look fine until you have pushed your limits and the disease is no longer invisible and you have to deal with the aftermath for a week or two after. I agree with the DAS pass and if you can take a nap when you can. I don’t nap, I will sit and people watch while my family moves on w/o me. I hate raining on their parade. DAS definitely allows me to extend the fatigue and for that I am grateful.
Thanks for the article. I am also effected by an autoimmune neuro-muscular disease. Mine mostly effects my lower body and stamina. We just got back from 7 days at the parks and fully enjoyed every day. I probably rode 10 rides the entire week but I rested and ate and ate! For me renting a scooter is the answer. Without that scooter I would have a hard time making it from the bus depot to the first ride entry, never mind standing in queue. Its still hard to see the looks from other guests (especially at the bus stop) when they see a normal looking, not overweight and relatively young woman on the scooter. Sometimes I respond to their comments, sometimes I close my eyes and pretend to sleep. For me that scooter brings independence I don’t have everyday at home all the time. Happy to see that you are learning to love life in your new body. Its not an easy or fast journey and I wish you continued health and happiness.
Thanks so much for this…having been diagnosed with MG 2005 and a native Floridian and annual PASSHOLDER, life definitely had to be adjusted. I have learned to move and walk more than usual a week before our trip. Also, walking through gift shops for longer than usual helps with a nice cool off. I honestly didn’t know about the DAS pass…I will definitely be looking into that next trip.
Thanks from a fellow MG warrior
Cindy
My 14 year old daughter has Myasthenia Gravis. We went to Disney last summer before she was diagnosed & it was rough for her. Thank you for this article, as we are going this summer and very much appreciate the tips.
Thank You for bringing attention to Myasthenia Gravis I’ve struggled with it for four years now and I’m always grateful for any awareness brought to the disease since there are so few who have ever heard of MG and even less known about how to properly treat the disease itself.
I am a new MG victim too. Thank you for your hints and I am sure that I will use them soon. It’s is hard getting so tired so quick. I am determined to live life the best I can.
I wish I read this before going to WDW in May!
I was diagnosed with MG in 2013 and did not know about the DAS pass until this year. I have spent many WDW trips struggling because of the heat or overuse of my legs from walking. I’m hoping the DAS pass for my upcoming trip will alleviate some of my tribulations. Thanks for sharing!