How to cope with a neurological disorder in the parks

[TinkFan74]

My daughter has asked a friend to accompany us on our upcoming trip to WDW, unfortunately her friend has recently been diagnosed with chiari malformation type I, and she is having difficulty with her balance, coordination, ringing in her ears, nausea and headaches. Her doctor has said that it is safe for her to go with us as long as she doesn't go on any thrill rides and does not over exert herself. The girl's mother is still allowing her to come with us, and I feel comfortable having her come along (I am a nurse, and believe I will be able to monitor and manage the situation), but I have never dealt with medical issues like this one while on vacation, is there anything that I need to know? Would this be an instance where a wheelchair would be acceptable due to her balance and coordination concerns? Has anybody else dealt with neurological issues in the past and have advice for me? I am open to all suggestions,
TIA
Stacey

 

[mousehockey37]

My daughter has asked a friend to accompany us on our upcoming trip to WDW, unfortunately her friend has recently been diagnosed with chiari malformation type I, and she is having difficulty with her balance, coordination, ringing in her ears, nausea and headaches. Her doctor has said that it is safe for her to go with us as long as she doesn't go on any thrill rides and does not over exert herself. The girl's mother is still allowing her to come with us, and I feel comfortable having her come along (I am a nurse, and believe I will be able to monitor and manage the situation), but I have never dealt with medical issues like this one while on vacation, is there anything that I need to know? Would this be an instance where a wheelchair would be acceptable due to her balance and coordination concerns? Has anybody else dealt with neurological issues in the past and have advice for me? I am open to all suggestions,
TIA
Stacey

I'll more than likely be of little help, but I would re-direct your questions to the mother of the friend. She'll be the one that knows her best.

I would think that a DAS for her would be ideal, so make sure to get that done, as possibly waiting in long lines may become difficult. Also, how much of a thrill is a thrill ride? Obviously the coasters are out, but what is the definition of thrill since Disney has several levels to the definition of thrill.

A wheelchair does sound like something that may be useful (if needed).

Again, I'd ask the mother of the friend. She hopefully would have most of the answers you will need from prior family vacations.

ETA: If your daughter's friend has an iPhone and will be bringing it along, I would make sure that the Health app is completely filled in. A parent could easily miss telling you something and having the app up-to-date and complete could be a big help if needed.

 

[TinkFan74]

Thanks for all of the information, it will come in handy. This will be uncharted territory as this family has limited finances, so vacations have always been out of the question, but I will get mom to ask more specific questions to the doc about what constitutes a "thrill ride". And I think I will look into getting a DAS if it is apropriate.
Thanks again,
Stacey

 

[Earstou]

I'm a Chiarian with very similar symptoms.
I no longer ride any of the coasters, Tower of Terror, Primeval Whirl or Dinosaur. Any ride that makes my head jerk a lot, I don't ride. Plus with my dizziness, I don't ride the teacups or other revolving rides.
I've used an ecv the last few visits due to chronic fatigue. I used a wheelchair once, but it was difficult because it made my dizziness worse (my pushers stopping and starting, or turning suddenly was too much for my poor little brain).
I suggest you go ahead and try the wheelchair if she wants it, since she's too young for an ecv, but be sure she tells you if it's bothering her.
I also have trouble dealing with the heat, so you might keep an eye out for that. I wear a cooling scarf if I'm there when it's hot.
We always do at least one table service meal a day, so that I can sit, cool off, and rest awhile.

This last bit of advice is for the young lady and isn't necessarily park related.
With my dizziness/balance problems, I was told to try not to turn my head so much, instead turn my whole body. So if I want to look at something to the left, I turn my whole body. This little thing has helped me quite a bit.

Hope this helps!

 

[OurBigTrip]

I would absolutely recommend a wheelchair, as most lines are wheelchair accessible at WDW. Based just on what you wrote, I personally wouldn't ask for the DAS, as it doesn't sound as though her issues are with waiting in the line (the sounds, the crowds, etc.), but more with the mobility problems that waiting in line would cause.

Have a great trip!

 

[TheRustyScupper]

1) The DAS should help a little by allowing off-line rests.
2) Now, the child is going to have to watch the rides, a=on a case-by-case basis.
3) Some, although seemingly tame, could cause shocks to the neck.
4) As an example, some of the tamer rides to watch for hidden hazards (not a full listing)
. . . Pirates of the Caribbean - water drop sequence
. . . Teacups - spinning and twirling imparting centrifugal forces
. . . Spaceship Earth - jerking when ride chain stops/starts for handicap access

 

[SueM in MN]

This is a link to page 2 of the disABILITIES FAQs thread.
http://www.disboards.com/threads/di...ed-1st-trip-next-trip-wish-trip.595713/page-2

Post 23 in that thread lists all the attractions with warnings and some without warnings that guests have posted comments about. spaceship Earth has never been mentioned before as an issue that I have seen and I have never felt it jerk to a stop.
I would say, based on our experience, that they seldom stop it for guests with disabilities to load or unload. We need to bring our daughter's wheelchair right onto the loading walkway and lift her in and out. They slow it to a crawl as we get on and off and usually we can get in or out before we run out of space. When they have needed to stop it for us, it has been to a crawl first and I am standing up on the moving walkway and feel a gentle stop.
Coming to a jerking stop would probably be due to an unusual situation, such as a random guest tripping getting on or off, or someone doing something while riding that caused an emergency stop. So, not a frequent occurrence and if they know they will need to stop, they will generally slow it first.

 

[SueM in MN]

DAS may or may not be helpful. The accommodation is being able to wait your turn outside of the line. Your wait will be based on the current wait time in the Standby line, minus 10 minutes. The thrill rides tend to be the attractions with the longest waits in line, so DAS may not help you much if you are not doing the thrill rides.
If you request it, make sure your explanation of her needs relate to her needs while waiting in lines. There is a quick explanation of DAS in post 6 of the disABILITIES FAQs thread and a more complete explanation in a WDW DAS thread located near the top of this board.

It would also be helpful to check websites like touringplans.com or easywdwinfo.com
They have suggestions for which parks are likely to be the least busy each day, which will help you to avoid crowds and also help you to be in the areas with the shortest waits.
Every guest is able to make 3 Fastpass times in advance - how far in advance depends on where you are staying; guests at WDW resorts can make reservations up to 60 days in advance.
If you have smartphone, you should download the My Disney Experience (MDE). It will be helpful to see attractions with short waits. If you do get DAS for her, WDW just started putting DAS on Magicbands/ ticket cards -MDE is helpful because you can see the standby waits and also, the DAS time will show up with your Fastpasses on MDE.

 

[SueM in MN]

A wheelchair would be helpful for fatigue and for moving her around if she is unsteady, but as Earstou mentioned, might give her vertigo like symptoms. I guess you will have to try and see. Some of the unpleasant sensations might be due to unexpected movement or movement where she is not looking in the direction the wheelchair is going. So, it may help to take gradual turns and warn her of turns and stops so she can be looking in the direction of the turn. Also, stopping the wheelchair so she can look around periodically with it stopped might be helpful.

The park rental wheelchairs are adult size and may not be comfortable for someone smaller. My mom used one on a recent trip. She was about 5 foot 4 and about 110 pounds. She found it uncomfortably wide, especially as the footrests don't come all the way to the center. It was most comfortable sitting with her legs sort of to one side and both feet on one footrest. Incidentally, on our trip we just got back from, I noticed quite a few smaller adults sitting that way.
For comparison, the park rental wheelchairs' sweats are 20 and 22/24 inches wide. My daughter is 5 feet tall and around 80 pounds. Her custom wheelchair has a 14 inch ride seat.

If you decide to rent from offsite, some of the companies rent narrower wheelchair with 16-18 wide seats. You can get more info from post 2 of the disABILITIES FAQs thread near the top of this board.

 

[TinkFan74]

I'm a Chiarian with very similar symptoms.
I no longer ride any of the coasters, Tower of Terror, Primeval Whirl or Dinosaur. Any ride that makes my head jerk a lot, I don't ride. Plus with my dizziness, I don't ride the teacups or other revolving rides.
I've used an ecv the last few visits due to chronic fatigue. I used a wheelchair once, but it was difficult because it made my dizziness worse (my pushers stopping and starting, or turning suddenly was too much for my poor little brain).
I suggest you go ahead and try the wheelchair if she wants it, since she's too young for an ecv, but be sure she tells you if it's bothering her.
I also have trouble dealing with the heat, so you might keep an eye out for that. I wear a cooling scarf if I'm there when it's hot.
We always do at least one table service meal a day, so that I can sit, cool off, and rest awhile.

This last bit of advice is for the young lady and isn't necessarily park related.
With my dizziness/balance problems, I was told to try not to turn my head so much, instead turn my whole body. So if I want to look at something to the left, I turn my whole body. This little thing has helped me quite a bit.

Hope this helps!

Thank you, this is great information. I will heed your advice and not make fast passes for these rides. Are you able to ride Splash Mountain? this is the biggest concern of both girls.

 

[Sunnywho]

I would suggest that you take her on an outing to a zoo or somewhere similar at home to get a feel for what her limits might be. The balance and coordination issues are what might cause her to fall or injure herself, but the nausea and headaches are significant too because those will make her feel less well throughout the trip. If she has any ways to manage those, such as staying cool or taking meds or eating frequent small meals, that might help. Also First Aid is in every park and has cool dark spots to lie down if needed.

 

[Earstou]

I do ride Splash Mountain, usually once per trip. I sometimes brace my neck on rides, by putting my arms up, and wrapping my fingers around the back of my neck and bottom of head, just for extra insurance. Don't know if it helps, but it makes me feel I'm doing everything possible!
Neck movement can really impact us. Because of the location of the malformation, sometimes bending the head backwards or forward bothers us. This can cause dizziness or nausea.

If I'm worried that a ride might be too much for my dizziness, but I still want to do it, I will wait until the end of the day, so that if it really bothers me, my whole day isn't ruined, just the last few minutes!!

I assumed when you mentioned balance and nausea, that she also had dizziness, but I realized later you didn't mention it. So I'm not sure if the following will help her, but I did want to mention it. My balance issues and nausea usually come from the dizziness. I've been told I use my vision to maintain my balance. If I close my eyes, I start falling over. Because of this, a lot of visual stimulation makes my dizzy. This makes walking thru crowds hard, so I prefer to follow someone I'm with, so I can concentrate on their back, and not the surging mob of people. I also limit looking around, especially if I'm walking, I will focus on where I'm going. If I want to look at something, it's best that I stop to look. I try to avoid looking at moving objects if I'm having trouble, closing my eyes if I'm sitting down.

 

[TinkFan74]

I do ride Splash Mountain, usually once per trip. I sometimes brace my neck on rides, by putting my arms up, and wrapping my fingers around the back of my neck and bottom of head, just for extra insurance. Don't know if it helps, but it makes me feel I'm doing everything possible!
Neck movement can really impact us. Because of the location of the malformation, sometimes bending the head backwards or forward bothers us. This can cause dizziness or nausea.

If I'm worried that a ride might be too much for my dizziness, but I still want to do it, I will wait until the end of the day, so that if it really bothers me, my whole day isn't ruined, just the last few minutes!!

I assumed when you mentioned balance and nausea, that she also had dizziness, but I realized later you didn't mention it. So I'm not sure if the following will help her, but I did want to mention it. My balance issues and nausea usually come from the dizziness. I've been told I use my vision to maintain my balance. If I close my eyes, I start falling over. Because of this, a lot of visual stimulation makes my dizzy. This makes walking thru crowds hard, so I prefer to follow someone I'm with, so I can concentrate on their back, and not the surging mob of people. I also limit looking around, especially if I'm walking, I will focus on where I'm going. If I want to look at something, it's best that I stop to look. I try to avoid looking at moving objects if I'm having trouble, closing my eyes if I'm sitting down.

Thank you so much. Crowds bother my daughter and I as well, but for different reasons, because of this we hit rope drop, stay until lunch, go back to the hotel until early evening, then head back to the park. We like to relax an take our time, so we will be staying for 13 nights so we don't feel rushed.
Thanks again for your help, it is nice to hear that your time at WDW can be just as enjoyable, it just takes some modifications to your plans.

 

[TinkFan74]

I would suggest that you take her on an outing to a zoo or somewhere similar at home to get a feel for what her limits might be. The balance and coordination issues are what might cause her to fall or injure herself, but the nausea and headaches are significant too because those will make her feel less well throughout the trip. If she has any ways to manage those, such as staying cool or taking meds or eating frequent small meals, that might help. Also First Aid is in every park and has cool dark spots to lie down if needed.

The outing is a great idea, we will try it
Thanks