Disney with Dysautonomia

[SamanthaH]

Hello all!

This will be my family's first vacation since being diagnosed with a condition called dysautonomia. I would love any tips/ advice from fellow Disney lovers with disabilities. Dysautonomia basically means there is a dysfunction with the autonomic nervous system which controls blood pressure and heart rate. I feel completely normal when I am lying down or jogging, but I have difficulty standing or sitting quietly for long periods of time. Blood pools in my legs and legs and stomach and doesn't make it all the way up to my brain. I feel good when I am jogging/ fast walking because this gets the heart beating vigorously to move the blood upstairs.

I feel pretty good in the morning, so my strategy is to hit the parks early and then take an afternoon break. I may have to forego the second half of the day and let my husband take the kids out. We will also use Fastpasses, and I will sit out if I am not feeling up to certain rides.

I was considering bringing a small fold out chair, like the kind hunter's use. Do you think they would offer me at GAC to wait in the wheelchair line with my chair? It folds back into the size of textbook. A more static line would be easier for me than a slow, moving line. I could also rent a wheelchair, but I find sitting low to the ground or squatting is much easier than having to sit straight up in a wheelchair. It helps to be able to lean forward and use my hand/ arm as a head rest. I was going to bring a doctor's note, but have been reading cast members are not allowed to read them anyway.

Even if the vacation is a challenge and I am able to do very little, I am really looking forward to watching my kids have fun. I would love any tips though and whether the chair idea is a good or bad one.

 

[SueM in MN]

Hello all!

This will be my family's first vacation since being diagnosed with a condition called dysautonomia. I would love any tips/ advice from fellow Disney lovers with disabilities. Dysautonomia basically means there is a dysfunction with the autonomic nervous system which controls blood pressure and heart rate. I feel completely normal when I am lying down or jogging, but I have difficulty standing or sitting quietly for long periods of time. Blood pools in my legs and legs and stomach and doesn't make it all the way up to my brain. I feel good when I am jogging/ fast walking because this gets the heart beating vigorously to move the blood upstairs.

I feel pretty good in the morning, so my strategy is to hit the parks early and then take an afternoon break. I may have to forego the second half of the day and let my husband take the kids out. We will also use Fastpasses, and I will sit out if I am not feeling up to certain rides.

I was considering bringing a small fold out chair, like the kind hunter's use. Do you think they would offer me at GAC to wait in the wheelchair line with my chair? It folds back into the size of textbook. A more static line would be easier for me than a slow, moving line. I could also rent a wheelchair, but I find sitting low to the ground or squatting is much easier than having to sit straight up in a wheelchair. It helps to be able to lean forward and use my hand/ arm as a head rest. I was going to bring a doctor's note, but have been reading cast members are not allowed to read them anyway.

Even if the vacation is a challenge and I am able to do very little, I am really looking forward to watching my kids have fun. I would love any tips though and whether the chair idea is a good or bad one.

Are you going to WDW or to Disneyland?
Things are a little different at DL than at WDW.

WDW has almost all Mainstream Lines, which means guests using wheelchairs or ECVs wait in the same line with everyone else. There are very few separate wheelchair lines.

The folding chair idea won’t work because you won’t have time to fold and unfold it. Most lines are slowly moving forward all the time, so you would need to keep getting up and moving the chair. Plus, once you get to the boarding area, you would not have time to fold it and, unfolded, it would not fit into the ride cars. You will not be able to bring a folding chair into the parks (they are on the official list of items not allowed into the parks).

People have brought in canes that have a small folding seat attached - they are allowed for mobility needs, take up very little more space than a regular cane.

You could bring a wheelchair and use it to alternate standing and sitting (push it when you are not in it). People also use rollators, which are walkers with fold down seats.

I don’t know if you found the place in the disABILITIES FAQs thread that talks about attractions where guests will stand unless they have a wheelchair or other mobility device. That would be helpful information - in most of those attractions, there is no way to avoid standing.

 

[SamanthaH]

Diosney World

The chair would definitely fit into the ride cars, because it folds back into the size of the textbook. It would take up less space than a cane. I would fold it up well before getting on the ride. If they don't allow tiny folding chairs though and if everyone enters through the same line, that scraps that idea. I think squatting and my other countermaneuvers will have to do.

If anyone out there has dysautonomia or POTS, let me know your tricks.

 

[SamanthaH]

Sue,

The first time I read your post I somehow skimmed over the suggestion about the cane with the folding seat. I somehow got stuck on the "not bringing the folding chair" and was fixated on how to make the wheelchair work. I read your post again and looked up the cane with folding seat online. THANK YOU!!!! That would be perfect. I could also use the cane to lean on when standing, instead of using my husband, and sit when I needed to. Will the cane fit on the rides? Or do they just hold it for you until you get off? Good idea.

 

[SueM in MN]

Sue,

The first time I read your post I somehow skimmed over the suggestion about the cane with the folding seat. I somehow got stuck on the "not bringing the folding chair" and was fixated on how to make the wheelchair work. I read your post again and looked up the cane with folding seat online. THANK YOU!!!! That would be perfect. I could also use the cane to lean on when standing, instead of using my husband, and sit when I needed to. Will the cane fit on the rides? Or do they just hold it for you until you get off? Good idea.

The cane should fit with no problem on most rides. If it doesn’t, the CMs should leave it at the unload area for you, the same as they do with crutches.
Just be sure to identify it as a mobility device.

 

[goofieslonglostsis]

Cane can be a good option. Just like a wheelchair when able to transfer, you will be able to leave them at the boarding area while riding. Some rides will not have you come back into the same place for unloading, but in those cases the CM's working will make sure your aid will get back to you.

Another option could be to consider a rollator. I find it has a broader seating area, while not taking up a big bulky space like walking behind a wheelchair would. When not needing a wheelchair, a rollator is a great option for getting momentary seatingspace and something to "hold on to". Realising how this effects everybody different, only you will know to what extent this is important to you. If you are familiar with fainting and/or blacking out and not being given enough time and/or realising this early enough to take your precautions and preventing a possible fall, a rollator is a huge benefit over a cane. With a cane you will go down and kiss the floor. A rollator gives you something to hold onto. As most can deal with most drains, black outs etc. without fainting as long as having something sturdy to hold onto/lean into, the rollator is a huge benefit in this.


My experience? Look at your daily life and itl'l give you plenty of info about what you might have to tackle and what can work for you or not. You might not be able to word it or find the practicle solution easily (for instance being able to word needing a seat and something to hold onto but not being aware of the rollator being an option), but that can always be solved on here. Tackle your specific triggers, take precautions where needed. It's not like it's something new that gets sprung on you while entering the gate of the parks. You deal with it in daily life and will have experience with different types of weather, surroundings, crowds etc. Translating them into WDW and most of all; NOT get blinded with the WDW-wow and ignore that little voice in your head.

And honestly? Me having pots is not of any bother, nor has it ever been, when around WDW. It's such a daily normality for me that I've adapted things that work for me so much that it's just any ol' other daily thing that gets unnoticed. I get a little bit of extra help in the form of needing to use a wheelchair 24/7 anyway (no need to look for a place to seat or hold onto when blacking out or having major arhytmias), but really the biggest factor in this being no obstacle really is the way it has been implemented into my normal so much I deal with it on autopilot just like us humans breath on autopilot.

 

[SueM in MN]

Cane can be a good option. Just like a wheelchair when able to transfer, you will be able to leave them at the boarding area while riding. Some rides will not have you come back into the same place for unloading, but in those cases the CM's working will make sure your aid will get back to you.

Another option could be to consider a rollator. I find it has a broader seating area, while not taking up a big bulky space like walking behind a wheelchair would. When not needing a wheelchair, a rollator is a great option for getting momentary seatingspace and something to "hold on to". Realising how this effects everybody different, only you will know to what extent this is important to you. If you are familiar with fainting and/or blacking out and not being given enough time and/or realising this early enough to take your precautions and preventing a possible fall, a rollator is a huge benefit over a cane. With a cane you will go down and kiss the floor. A rollator gives you something to hold onto. As most can deal with most drains, black outs etc. without fainting as long as having something sturdy to hold onto/lean into, the rollator is a huge benefit in this.


My experience? Look at your daily life and itl'l give you plenty of info about what you might have to tackle and what can work for you or not. You might not be able to word it or find the practicle solution easily (for instance being able to word needing a seat and something to hold onto but not being aware of the rollator being an option), but that can always be solved on here. Tackle your specific triggers, take precautions where needed. It's not like it's something new that gets sprung on you while entering the gate of the parks. You deal with it in daily life and will have experience with different types of weather, surroundings, crowds etc. Translating them into WDW and most of all; NOT get blinded with the WDW-wow and ignore that little voice in your head.

And honestly? Me having pots is not of any bother, nor has it ever been, when around WDW. It's such a daily normality for me that I've adapted things that work for me so much that it's just any ol' other daily thing that gets unnoticed. I get a little bit of extra help in the form of needing to use a wheelchair 24/7 anyway (no need to look for a place to seat or hold onto when blacking out or having major arhytmias), but really the biggest factor in this being no obstacle really is the way it has been implemented into my normal so much I deal with it on autopilot just like us humans breath on autopilot.

With a rollator, there would also be the option of sitting on the seat and leaning over with your head lower than your heart. That would be much more stable than doing it with a cane.

 

[KPeveler]

I second the idea of a rollator or even a transport wheelchair (the kind with small wheels - a lot lighter than bigger ones). As a probably-POTSie myself (I have an unofficial diagnosis), I totally get the sudden need to sit down.

With a folding cane, you have to unfold it and get enough space and get it situated before you can sit down. A rollator will have the seat ready so you can sit down before you fall down. Also a rollator has a larger seat, which may be a lot more comfortable. Canes have no "sides" to them, so you can easily fall sideways if you get dizzy. A rollator will have a backrest and the arms on either side of you - it makes it less likely you will fall.

 

[SamanthaH]

My heartfelt thanks for all the wonderful suggestions! I never in a million years thought I would get responses from not one, but two fellow POTSies.