1st trip w/ Narcolepsy and I’m nervous!

[CourtneyKaro]

Hi everyone!! Hoping someone else can help ease my anxiety about our upcoming trip to WDW 12/19-12/27. We are a family of four (DS is 8 DD will be 14 on 12/12) I was (finally) diagnosed with Narcolepsy w/ EDS about 2 years ago. What a relief to have a name to put to what I was experiencing. We are planning a surprise visit to Disney for the kiddos and I have been looking forward to it for awhile but as it draws closer I am more and more concerned that my N will make the trip less enjoyable for the family, so much so that I have even discussed having my hubby take someone else in my place. So far our current plan is for them to adhere to our day to day plans and reservations and leave me behind if I am having difficulties getting up in the morning or if I need to head back to the resort to sleep, or if I need to nap on a bench. My biggest fears are 1) falling asleep in queue for a ride (I am less likely to fall asleep if we are moving more likely to fall asleep standing in one place but I know I will have to be waiting in long lines because Christmas.) and hitting my head and 2) will I end up feeling like I missed out on everything (and wasted a lot of money) since I won’t be able to participate with my family. Any advice or guidance or reassurance that this is doable would be greatly appreciated!

 

[gap2368]

Remember there is a first aid at each park that you can rest at if need be. Most lines are slow moving with a stop for a few seconds to a minute or two you can make a small bubble around you by having your family stand a little behind you so that when the line dose stop you can keep moving some

I think having your family go even if you still need to rest is a good idea. Take breaks stay well hydrated

There are not a lot of benches to sit on so if you need a set you will need to bring your own ( wheelchair roller ECV )

 

[danielocha30]

I would stop at guest relations and see if DAS apply to your case, it doesn’t hurt to ask. I’m not familiar mith your diagnosis but you for sure can explain them why you might benefit from using DAS, to me it will be better for you to do the wait outside the qeue as DAS allow you to. Good luck and DO go and enjoy your trip.

 

[MinnieMSue]

You should probably take a wheelchair and you can sit down in it if you get sleepy even in line. That’s what I’d do. You or someone else can push it when you aren’t sitting in it. Seems more helpful than a DAS would be - we had to stand and wait a lot in FP lines this summer - some you stand and watch a movie ghost takes quite a while. I was surprised at how much longer or slower moving FP lines were this year than in previous years. Not every line but a lot

 

[mamabunny]

As @gap2368 said, First Aid might be a great part of your plans, and @MinnieMSue has another great idea with the wheelchair. You can just push it like a walker when you don't want to/need to use it.

We just returned today, and I did notice that (in MK especially, where the lack of benches was really becoming problematic) that Disney is doing a better job of creating either built-in to a wall bench "shelf" that you can sit on, or wider-width planter boxes that allow easier use as a seat. Epcot World Showcase still needs a TON of places to sit; our last night at WDW was there, and we saw so many people just sitting on the concrete. Our daughter remarked that it is *not* a good look for Disney when you see so many people sitting on the ground like that.

Good luck - remember that there is a lot to do at Disney World that doesn't involve theme parks, and might be adaptable in your situation. Many of the Resorts now have craft activities for the family in the afternoon/evening hours, as well as movies on the lawn and S'mores at the fire pit. Lazy river cruises on the Sassagoula from POR to Disney Springs take about 20 minutes, and no one is going to think twice if you put your head on your hubby's shoulder! There are similar boat trips to/from FW and/or WL to MK that kids love. When in the Parks, focus more on shows if you can - that way, you can sit, and if you have a narcolepsy moment, most folks will be busy watching the show.

Last but not least, remember that "normal" is just a setting on the washing machine. Don't worry about what you can't do - look for what you *can* do, and enjoy that!

 

[stsomewhere]

My daughter has EDS. We find that if we let her sleep in and go to the parks later in the day around 11am-1pm and stay late that it works out much better for her. We did get her to use a wheelchair for one day. Just take it easy and enough the parks. It does not have to be run here or there visit, take it easy and enjoy what you can.

 

[happymommy]

My youngest has EDS also, along with POTS (very common). He cannot stand to shower, so we have to book a roll in shower with a bench ADA room. We also bring a wheelchair to Disney and get a DAS for him. I'd also recommend getting a DAS and consider renting a wheelchair for the whole time from an offsite place.

 

[Karin1984]

I do not know anything about this condition, however I would advise to not focus on things you miss out on. As I read your story, there will be moments where you fall asleep. Accept and acknowledge these moments will occur, but these are no reason to put your life on hold. If you would stay home and your family goes with someone else, you will definitely miss out on everything.

Go in there with the knowledge you might miss some things, but there will also be plenty of moments where you will be there with your family. There will be moments when something fun or exciting happens and you are there with them. There will be great memories ahead I think that with every condition that impacts your life immensely, you need to look for what you CAN do, not what you CANNOT do.

I understand this trip is a surprise, but I would look for ways to somehow talk about your worries with your children. Not to put a burden on them, but this is a family trip. Your kids can support you too, if they are prepared for what could happen on the trip.

 

[cobright]

I do not have narcolepsy but do enjoy a few sleep disorders that affect my daytime wakefulness, and I have a strategy for managing health impairments on vacations that may be useful to you... What follows is just a stream of consciousness sort of preponderance and I don't ever mean to sound like I know your condition better than you. But ... you're asking for problem solving and this is the sort of problem I enjoy working through ... so...

1. Is your narcolepsy ... attack(?)... completely unpredictable? I'm sure you have spent some time journaling your symptoms; are there patterns of time you can exploit? Can you shape your day in the park to times when least likely to nod off?
2. I have found that it's really a pretty small additional cost to use Uber to dramatically shorten transit times. This lets you be far more 'time agile' getting to the parks, out of the parks, and back too the parks in ways that conform your day to a more productive schedule.
3. If there a pharmaceutical intervention that is effective, speak with your doctor about titrating a therapeutic dosage just for your vacation that maximizes efficacy instead of minimizing side effects. Often, especially with something like Dexedrine or whatever is the en vogue amphetamine we settle out on a dose that is the least ammount of the stuff that will offer some relief. This is a great idea on a day to day basis. But when you are laying out bank for a WDW vacation, taking a couple of bennies a day can mean a real quality of life issue. Vacations keep us sane individuals and whole families, special rules are a fair concession to make.
4. Taking another tack ... I just read something that suggests that a 1 hour nap may stay off an unplanned snooze for as much as 3 hours. If you find this to be the case, then perhaps reverse my Uber suggestion and make plans that involve an hour transit every couple of hours. Plan your meals outside the parks and take the long way (monorails, boats, etc.) Plan attraction schedules that put you in a seat for a show every so often. Sure, you may miss out on a show but if everyone knows not to nudge you awake then you'll be less likely to miss the next two.
5. Probably shouldn't get an ECV. Sorry, not being flippant, it was just a weird thought. We spend hours of a Disney day just walking from one place to the other. I'm actually developing a 'follow me' feature for my friends power-chair so she can nod off while we walk together. She made it through a particularly bad cancer therapy and her strength and endurance is permanently gone. The analog version of this would be to plop down into a manual chair and get hubby to push. I don't mean to suggest that you just sleep through your vacation, just that making it easier to nod off during the boring parts of the trip may help you stay upright for the fun parts.
6. Short version is to plan your day around what (and to what extent) you can predict. Allow that there will be problems and do your best to make time in your schedule for them.
7. Don't fall into the trap of being the generous martyr. Your family wants a family vacation, not a trip to a theme park. In addition to Disney, my family sails and whe have a catechism of sailing maxims we recite by rote.
   • "We all pull together" - This phrase, pull together, is usually thought to mean gather close, but it's a nautical term relating to line handling on the old ships. Ten men on a single line is the same as one person on that line if they all pull at different times.
   • "Weak as our weakest link" - This is not condemnation of the weak link. It means that it's a waste of effort to run ahead just to wait for the rest of the group to catch up. A self reminder to be aware of where the rest of us are.
   • "Needs must, when the Devil drives" - We accept that there are things we may not enjoy doing, but we do it anyway if it's a necessity. If going on vacation as a family means everyone might get to do a bit less, even a lot less, stuff... then that's what happens. Ohana means family...
8. Okay, this might sound silly or rude or offensive, if it's either of the last two I apologize in advance, but if I were prone to zonk out on a moments notice ... I would insist my family get a photopass photographer to memorialize this every chance they get. Sure, I might miss out on some sights, but a photo album of me asleep in front of Simba or holding Sebastian or sleeping next to Stitch would almost be worth it.

Good luck. However your vacation shapes up.

 

[gamomof2]

Our daughter has Narcolepsy. She is 23 and has been going to Disney and doing Disney cruises since she was 7. Diagnosed at 12. She is currently 250 mg of Nuvigil. She has had no problems with the park as long as she takes her pill before 8 in the morning. She takes it any later and she has a hard time sleeping that night. She takes it any sooner and she won't last the night. Admittedly she is the first one going back to the room at night and thankfully we have always trusted the Disney bus system to get her there and the resorts to be safe enough to go alone. Once in a while she will try to stay out for Wishes but she's no use to anyone after that. Also she can't drink alcohol after a certain time because the Nuvigil is wearing off and the alcohol aggravates her symptoms. She has no cataplexy.