Ehlers-Danlos III and the World

[homeschoolmomof4]

My DD(17) was recently diagnosed with Ehlers-Danlos type 3. Consequently, I was diagnosed with it as well. It explains the dislocations, injuries, tummy issues, migraines, dysautonomia and joint pain we both have. I've obviously been to the WDW many times and just suffered through the pain and injuries. This time I'm going in knowing what our issues are and am trying to make it a more comfortable trip. I'm going to request a room at Pop that's close to Classic Hall. I'm also going to see if they have any mini fridges with freezer compartments for our gel packs. I'm thinking about getting a GAC, but I'm not really sure if there are any benefits to it for us. My thinking is that unless either one of us is nursing an injury at the time, the crowds will be low enough that we'll be OK in lines and using Fastpass. Anyone else here with Ehlers-Danlos III that has any suggestions on making this a more comfortable trip? We'll obviously be bringing our pain relievers, biofreeze, lidoderm patches, muscle relaxants and sneakers.

 

[WheeledTraveler]

There are actually several EDSers on the boards (I'm one - I also have Hypermobility type). I'm a wheelchair user most of the time I'm outside the house, anyway, so I use my wheelchair, although, I have to get pushed in WDW because I can't wheel the entire distance, can't use an ECV (my hands/thumbs are particularly bad) and since diagnosis I haven't stayed on site so couldn't transport a powerchair.

I guess my big concern would be how many people are in your party and how you plan on getting around the world. Most people walk a minimum of 6 miles a day in WDW and depending on where you tend to have problems, that could be more than you can easily handle. I would really think about whether you and your daughter can handle that much walking on repeated days and possibly consider getting a wheelchair (either of you) or ECV (just you as you must be 18 to rent). WDW's answer to mobility and stamina issues is to suggest you rent one or both as there aren't benches in waiting areas and on paths where there are benches they may be full.

I'd also suggest you think about what rides might cause problems. For example, when I was last at Disney, I could ride Rock'n'Rollercoaster, but not Space Mountain because Space Mountain didn't give enough back/neck support, but RnR gave me enough. If you're extra prone to issues with bumpy things I know Kilimanjaro Safari was one of the bumpiest rides I've been on recently, but even Haunted Mansion and Spaceship Earth feel bumpy to me.

Other tips I'd have are:

1) Make sure you have enough pain medication. I would plan in needing extra meds just in case. I know even being pushed in my wheelchair I tend to need extra pain meds.

2) If you can, taking a break during the day (either you can lie down in a First Aid center or go back to your hotel if you're close enough).

3) Drink plenty of water/other fluids. If your dysautonomia is acting up Gatorade is good, but make sure you're getting plain water as well because even Gatorade will dehydrate you.

4) Don't plan to do everything. Even commando-type touring rarely means you can see everything and you can always come back to WDW again someday!

5) Remember that it's better to slow down, look at using a mobility aid, and enjoy WDW than it is to suffer through pretending you don't have EDS so that other people think you're normal. No one outside your party there knows you or will care if you and your daughter can't walk the park and it will be more fun for your entire party if you're not struggling and miserable in pain!

 

[lilwhiterabbit]

Yup, there are a few of us here (I also have type 3). Honestly, it's hard to give specific advice other than what you've already posted, since people with EDS experience radically different levels of what they can do. Like you, I'm largely mobile, but have issues that result from standing in one place too long, so I use a rollator with a seat when I'm at WDW. Others rely on wheelchairs or EVCs, and still others don't need to do anything special other than to be careful.

A GAC would really only be useful if you don't plan on using a mobility aid but still need to avoid stairs. Fortunately, there are only a few rides that have stairs in the first place. Otherwise, I'd say you and your daughter should do what is most comfortable for each of you. Only you know your bodies and what they're capable of.

One thing I do do that might be helpful is I wear braces on my ankles and knees when I know I'm going to be doing a lot of walking and standing. I don't know if this would help you or not, but it might give you a little extra support just in case you need it.

 

[clanmcculloch]

For the ice packs, the fridges for the rooms won't cut it. They don't have freezer sections. When heading out to the parks in the morning, stop by Bell Services and ask them to put them in their freezer and then pick them up when you get back from the park. I suppose if you have a fridge in your room then storing the frozen ice packs in there would keep them fairly frozen until you use each of them so you don't need to run back and forth to Bell Services every time you need to swap out an ice pack for another one.

You might want to consider for the parks carrying the types of ice packs where you crack something inside in order to activate them in case you need one in the parks during the day. That way you don't need to worry about just how cold they'll be when you actually need them. If you can't find these/don't want to buy these then you could always store ice packs at First Aid in the park; I think they have a freezer there. It's also a great place to lay down if needed.

At Pop, you'll want to look at a map of the resort and decide just what rooms you consider close to the Classic Hall. If all the rooms that look acceptable to you are in the Preferred area then you will need to pay for a Preferred room. If you could manage with say a parking lot view room in the 50s or 90s then specify near the Classic Hall (90s is much closer to the bus stops) and I'd personally ask for it to be noted as a disability need.

One note though. If walking a little farther at your resort will be difficult for you and your daughter then you really need to consider all the walking in the parks. The distances at Pop Century are not very far. The farthest rooms only take maybe 10 minutes to get from the room to the Classic Hall. If that's too much for you to handle then you really need to put some thought into your park touring. Your daughter isn't able to use a rental ECV because of her age so unless she has her own powerchair, she'll need to either walk or be pushed. If you can't walk the distances yourself then you can't be the person pushing her. Can your 14/15 year old push her while you use an ECV (as in can he be trusted to not go kamakazi on his sister as brothers at that age are known to do) with maybe a bit of swapping out with the 11/12 year old and 9/10 year old, or do you have another adult who will be travelling with you who can help push her? I'm not trying to be difficult here or put a damper on your trip but you really do want to think about this now rather than when you get there.

 

[homeschoolmomof4]

There are actually several EDSers on the boards (I'm one - I also have Hypermobility type). I'm a wheelchair user most of the time I'm outside the house, anyway, so I use my wheelchair, although, I have to get pushed in WDW because I can't wheel the entire distance, can't use an ECV (my hands/thumbs are particularly bad) and since diagnosis I haven't stayed on site so couldn't transport a powerchair.

I guess my big concern would be how many people are in your party and how you plan on getting around the world. Most people walk a minimum of 6 miles a day in WDW and depending on where you tend to have problems, that could be more than you can easily handle. I would really think about whether you and your daughter can handle that much walking on repeated days and possibly consider getting a wheelchair (either of you) or ECV (just you as you must be 18 to rent). WDW's answer to mobility and stamina issues is to suggest you rent one or both as there aren't benches in waiting areas and on paths where there are benches they may be full.

I'd also suggest you think about what rides might cause problems. For example, when I was last at Disney, I could ride Rock'n'Rollercoaster, but not Space Mountain because Space Mountain didn't give enough back/neck support, but RnR gave me enough. If you're extra prone to issues with bumpy things I know Kilimanjaro Safari was one of the bumpiest rides I've been on recently, but even Haunted Mansion and Spaceship Earth feel bumpy to me.

Other tips I'd have are:

1) Make sure you have enough pain medication. I would plan in needing extra meds just in case. I know even being pushed in my wheelchair I tend to need extra pain meds.

2) If you can, taking a break during the day (either you can lie down in a First Aid center or go back to your hotel if you're close enough).

3) Drink plenty of water/other fluids. If your dysautonomia is acting up Gatorade is good, but make sure you're getting plain water as well because even Gatorade will dehydrate you.

4) Don't plan to do everything. Even commando-type touring rarely means you can see everything and you can always come back to WDW again someday!

5) Remember that it's better to slow down, look at using a mobility aid, and enjoy WDW than it is to suffer through pretending you don't have EDS so that other people think you're normal. No one outside your party there knows you or will care if you and your daughter can't walk the park and it will be more fun for your entire party if you're not struggling and miserable in pain!

Good point about the rides! DD hasn't gone with me the last couple of trips and I'm not sure how her body will react. Her EDS has gotten markedly worse the past 2 years. I won't ride Space Moutain anymore because it's too jerky for me and I'm terrified something will go out. DD and I will have to go over the rides before we leave and come up with a game plan.

 

[homeschoolmomof4]

Yup, there are a few of us here (I also have type 3). Honestly, it's hard to give specific advice other than what you've already posted, since people with EDS experience radically different levels of what they can do. Like you, I'm largely mobile, but have issues that result from standing in one place too long, so I use a rollator with a seat when I'm at WDW. Others rely on wheelchairs or EVCs, and still others don't need to do anything special other than to be careful.

A GAC would really only be useful if you don't plan on using a mobility aid but still need to avoid stairs. Fortunately, there are only a few rides that have stairs in the first place. Otherwise, I'd say you and your daughter should do what is most comfortable for each of you. Only you know your bodies and what they're capable of.

One thing I do do that might be helpful is I wear braces on my ankles and knees when I know I'm going to be doing a lot of walking and standing. I don't know if this would help you or not, but it might give you a little extra support just in case you need it.

DD has braces for her ankles and we will definitely be using them. Thanks for the reminder. I'm not sure we would have remembered to pack them! She also has wrist braces and I really think she might need them as well.

 

[homeschoolmomof4]

For the ice packs, the fridges for the rooms won't cut it. They don't have freezer sections. When heading out to the parks in the morning, stop by Bell Services and ask them to put them in their freezer and then pick them up when you get back from the park. I suppose if you have a fridge in your room then storing the frozen ice packs in there would keep them fairly frozen until you use each of them so you don't need to run back and forth to Bell Services every time you need to swap out an ice pack for another one.

You might want to consider for the parks carrying the types of ice packs where you crack something inside in order to activate them in case you need one in the parks during the day. That way you don't need to worry about just how cold they'll be when you actually need them. If you can't find these/don't want to buy these then you could always store ice packs at First Aid in the park; I think they have a freezer there. It's also a great place to lay down if needed.

At Pop, you'll want to look at a map of the resort and decide just what rooms you consider close to the Classic Hall. If all the rooms that look acceptable to you are in the Preferred area then you will need to pay for a Preferred room. If you could manage with say a parking lot view room in the 50s or 90s then specify near the Classic Hall (90s is much closer to the bus stops) and I'd personally ask for it to be noted as a disability need.

One note though. If walking a little farther at your resort will be difficult for you and your daughter then you really need to consider all the walking in the parks. The distances at Pop Century are not very far. The farthest rooms only take maybe 10 minutes to get from the room to the Classic Hall. If that's too much for you to handle then you really need to put some thought into your park touring. Your daughter isn't able to use a rental ECV because of her age so unless she has her own powerchair, she'll need to either walk or be pushed. If you can't walk the distances yourself then you can't be the person pushing her. Can your 14/15 year old push her while you use an ECV (as in can he be trusted to not go kamakazi on his sister as brothers at that age are known to do) with maybe a bit of swapping out with the 11/12 year old and 9/10 year old, or do you have another adult who will be travelling with you who can help push her? I'm not trying to be difficult here or put a damper on your trip but you really do want to think about this now rather than when you get there.

Great idea about having Bell Services keep our freezer bags for us! I would never even have considered this as an option!!

This trip is only for the 3 Disney addicts in our family. DD(17), DS(11) and myself will be the only travelers. My concern is that if either myself or my oldest gets injured, walking long distances could be a problem. I went a couple of years ago with DS, who was 9 at the time, and sprained my ankle. I didn't know about my EDS at the time and was walking around Disney in flip flops. I wrapped my ankle up, iced it, put on sneakers and toughed it out the rest of the trip. It was not comfortable at all, but I kept on going. I would really like to prevent a repeat of an incident of this type. DD is still in denial somewhat with her EDS. I honestly think she's still grieving. She wants so badly to be "normal" that somedays she doesn't take care of herself the way she should. I have a feeling we're going to need to have a very serious conversation about how best to protect her from injuring herself on this trip.

I think I will ask my TA to put down close to Classic Hall as a disability need. I think I will ask for a fridge as well. Can it be referenced as a disability need as well? My DD pointed out that even a cold , not even frozen ice pack, would feel better than nothing at all.

 

[WheeledTraveler]

Another option for ice packs is to get the sort that are refillable with ice. Then you can just use the ice at the hotel (or get ice from a CS place or something when you're in the parks).