Tips for Disney World Trip

[HangingByAThread]

Hello everyone.  I was hoping you could give me some tips regarding an upcoming trip to Disney with my family this summer.  I went once before - about 5 years ago - (that was before my Hyper-P.O.T.S. diagnosis) and it was pretty awful with me spending a lot of time sitting on the ground or lying flat on the carpet inside of an air-conditioned gift shop while my family waited on line or rode the rides.  I’ve since gotten a handle on the day-to-day things and wear full-length compression hose, take tons of salt, and am on Methyldopa, I carry cold water, ice, do the cold towel around the neck, etc.  I normally take a “seat cane” (a cane with 3 legs that folds into a seat I can sit on) when I go to a museum because I can’t stand that long but I don’t know if this is do-able there because I don’t think it would be secure on all the rides, plus it is awkward to carry and people often trip over it while I’m walking in close quarters (due to the two other legs jutting out slightly).  I can’t go on many rides anyway due to balance/heart issues but do want to be able to stand on the lines with my family.  My husband suggested I get a ride on scooter but I can’t sit all day either because then I get horrible pooling behind my knees …..plus I fear being yelled at when I get up out of the scooter, because other guests might think I’m faking because I look totally able-bodied.  What have others done in my position?  I know Disney says they are accommodating to different disabilities, but I was wondering what worked for you – and how receptive Disney is with someone with P.O.T.S.  I understand I need to show up the day of and speak to someone about my condition, but I’d like to know ahead of time to make me feel more at ease.  Two years ago, I was told I could be accommodated for jury duty but then they refused to let me put my feet up, made me stand a lot longer than I was able to in a hallway without seats, refused to let me get water or take bathroom breaks (and I got very ill - couldn't get myself home and had to spend the next day in bed) so I’m very nervous when people say they will accommodate because I feel most don't have a clue what I go through on a normal day, even though I look "normal".  Thanks for any advice you can give me!

[yogini]

Do you need to go in the summer?  It is extra hot and crowded.  

I would spend some time researching Disney for people with disabilities ahead of time - and also just how to navigate the park.  There are many things you can do to prepare and make your trip less stressful.  There a lot of good books and websites dedicated to this. Don't hesitate to use all  of Disneys disability services if you need them. Who cares what people think about the scooter, when you'll never see them again!  

I've grown up going to Disney and been their twice post-POTS. Bbut by the time I went I had very minimal symptoms left.  I could walk around, wait in line and go on any rides (though I skipped some out of caution).  I do tend to get tired, so just slept in and met my family a few hours later in the day.  We stayed in Disney properties so there is free transport by bus or rail. And made sure to stay hydrated.  You can bring in food and drinks, last I heard.  

[WinterSown]

I was just looking at these links the other day--all good advice.

https://disneyparks.disney.go.com/blog/disney-parks-disability-access-service-card-fact-sheet/

https://disneyworld.disney.go.com/faq/guests-with-disabilities/

https://www.undercovertourist.com/blog/disney-world-disability-access-attractions/

https://disneyparks.disney.go.com/blog/2018/04/moms-panel-monday-traveling-with-guests-with-cognitive-disabilities/

Have a fun trip!

 

[Pistol]

I personally would not go unless I have a wheel chair and only be outside when it is not as hot ( like early morning or late evening ). IF I were to go to Disney ( which I am not able to due to POTS ) I would probably stay in the hotel while my family goes to the park and enjoy the activities like dinner etc in the evenings. 

[bunny]

We picked up annual passes for a good discount in the middle of last year, so I've been quite a few times.  I'm actually going again tomorrow. 

A few thoughts:

1) Go in times of cooler weather / lower humidity.   Humidity does me in like nothing else.   The parks get unbearably humid after summer rainstorms.  Even mornings in the summer have near-100% humidity in Florida. 

2) Go when the crowds are lower.  Worst is Christmas-New Years, the weeks around Easter, June-Mid August.  It's no coincidence that these are also the block-out dates for the cheaper season passes, which should tell you something -- avoid these dates!  More people = more waiting = more standing around. 

3) Cups of ice water are free at the restaurants.  Everyone, not just dysautonomia folks, should take advantage of this. 

4) Feel free to bring in a backpack full of food & drinks.  Unlike other theme parks, Disney doesn't restrict what you bring in the park.  Just as long as it doesn't look like you're going to resell it, the park has no problem with it. 

5) Pace yourself. Your Disney passes are good for the entire day, no matter how many times you want to enter & leave.  If we're going to spend a whole day at the parks, we'll go right when the park first opens ("rope drop") and stay until about noon.  By that time the crowds have picked up and so has the heat.  We then retreat to our hotel (or the cooler, quieter lobbies of the Disney hotels) and rest.   We then come back later around 5pm or so and finish off the night. 

6) Consider a rollator, wheelchair, or ECV.  You can rent them from off-site (non-Disney) vendors much cheaper than renting them from the Mouse.  Even if you don't use it the entire time, you can use it as support and it's also there if you need it.  We usually average ~5-15 miles in a day.  Remember, EPCOT stands for Every Person Comes Out Tired.   You've never seen so many wheelchairs & scooters in your life until you've been to Disney.

7) Beware of trouble-prone rides, mainly their queues.  By pacing myself I normally can make it through a day without too much trouble.  I got myself in trouble with the Seven Dwarfs Mine Train last year.  The queue was down to 40 minutes which is unheard of.  After 60 minutes we'd barely moved and there wasn't any easy way to get out of the queue.  Even fully able-bodied people were struggling with standing for so long.  I was hurting, bad.  Finally in another 10 minutes we got to a part of the queue where we could easily escape the line, but it was pretty much too late for me.  It probably took me 30 minutes to make it to the main gate, sitting every chance I could, laying down, doing anything I could to avoid passing out.  We made it to the car, where I passed out.  I was still in rough shape the following day, even passed out in the grocery store.  

8 )  Rides.  To be honest, most of the rides at Disney are tame.   The most aggressive ones are: Expedition Everest (Animal Kingdom), Rock n Rollercoaster (MGM, er, Hollywood Studios), and Mission:Space Orange (EPCOT).  I did pass out on Expedition Everest and haven't tried the other two.   I've hit pre-syncope on many others.   In general, I don't mind passing out as long as I don't get hurt and doesn't cause a commotion.  I've certainly had to rest after rides, but again, that's fine by me.  

9) Portable fans.  I'm partial to these: https://www.amazon.com/OPOLAR-Operated-Capacity-Portable-Rechargeable/dp/B075ZQJCMY/  Cooling towels work best in drier climates.  Florida's a swamp.  The fans beat the towels by-far.  

10) Disboards.com!  They have a whole forum dedicated to medical issues: https://www.disboards.com/forums/disabilities.20/    Plenty of POTS/NCS/EDS/etc people posting their experiences on there.  

[CarolS]

I agree with @Pistol. They'll have wheelchairs there. My daughter is less disabled than you, from the sounds of it, but we always grab a wheelchair if we're somewhere that offers and will involve extensive walking. Took one in Ikea the other day. A huge percentage of wheelchair users have use of their legs. My daughter felt the same as you initially--worried about people seeing her get in and out--but she doesn't care anymore. And nobody has EVER commented on it. It's allowed her to join in so many family activities that would have been a nightmare without a chair. And it means she won't spend days afterward in post-exertional pain. If someone comments you can either tell them to **** off or say you have a heart condition. 

[Jan]

I like the advice to go in the winter vs summer.

The only advice I can add is to stay on the Disney Campus.  When I went with my family, I was able to hop on the Disney transportation system and meet up with them later in the morning, return to our room when I was tired, meet up with them for dinner at Epcot etc.  I loved that place.