POTS Syndrome / Dysautonomia

[kburke026]

I have a chronic illness called POTS syndrome- its a form of dysautonomia.

I've seen some posts previously about disability being denied with disney for this condition, but was wondering if anyone has any experience getting approval and what specifically helped?

this will be my first time visiting the parks since my diagnosis and I am a little bit worried for how I will do with all of the standing and walking.

 

[theMoreDisneytheBetter]

The recommendation for mobility and stamina issues (or standing and walking as you refer to it), will likely be a mobility aid.

If there is a reason unrelated to mobility and stamina that would prevent you from waiting in line that is what you should focus on in your interview.

 

[Kooks and Bay Bay]

Unfortunately this would be seen as a "mobility" issue that could easily be fixed by using a wheelchair/ECV so that you do not have to stand up in the lines.

Have you visited the parks in the past?
If so what did you do then?

 

[disneydaddvc]

I have a chronic illness called POTS syndrome- its a form of dysautonomia.

I've seen some posts previously about disability being denied with disney for this condition, but was wondering if anyone has any experience getting approval and what specifically helped?

this will be my first time visiting the parks since my diagnosis and I am a little bit worried for how I will do with all of the standing and walking.

 

[StitchesGr8Fan]

DAS generally isn’t given for mobility or stamina issues. They recommend mobility devices. We also aren’t allowed to coach people on what to say to increase their odds of receiving a DAS. You will just have to call and explain what happens when you wait in lines, and see what they say. But have a backup plan.

 

[disneydaddvc]

I have dysautonomia too. I look perfectly normal but I have muscle weakness and i get fatigued easily. You can rent a wheelchair found at the entrance of the parks. If they ask why you need it just simply say you have heart disease.

 

[gap2368]

I have dysautonomia too. I look perfectly normal but I have muscle weakness and i get fatigued easily. You can rent a wheelchair found at the entrance of the parks. If they ask why you need it just simply say you have heart disease.

I ave never been asked why I needed a wheelchair or ECV I highly doubt you will be asked why you need one.

 

[Narcoossee11]

I would suggest have a wheelchair/ecv your whole trip.
Either rent one from your home town (maybe borrow one) or get it dropped off at your resort.
Everything is HUGE in Orlando. Parks, malls , Wal mart, parking lots

 

[mamaofsix]

I am dealing with POTS triggered by a virus from last year. While we've used DAS for our kids with neurological disorders in the past, I didn't use it for myself on a recent solo trip.

These are some things that helped:
-Use Lightning Lane Multi-Pass. This helped mitigate long lines
-Did not "criss-cross" the parks, but focused on one area at a time.
-Used in-park transportation to get from place to place (trains in MK, friendship boats in Epcot, Main street vehicles, etc)
-Slowly visited attractions at my own pace, only choosing those with little to no wait
-Stopped often to sit, put my feet up in the A/C or shade (there are benches and chairs all over the place if you ask)
-Avoided thrill rides like Guardians, Tron, Everest, etc.
-Kept a full water bottle at all times and drinking lots.

All in all, things went well. Disney solo was much less stressful than being at home with all my kids, lol, so I didn't find my heart symptoms to be unmanageable.

 

[melificent]

I am dealing with POTS triggered by a virus from last year. While we've used DAS for our kids with neurological disorders in the past, I didn't use it for myself on a recent solo trip.

These are some things that helped:
-Use Lightning Lane Multi-Pass. This helped mitigate long lines
-Did not "criss-cross" the parks, but focused on one area at a time.
-Used in-park transportation to get from place to place (trains in MK, friendship boats in Epcot, Main street vehicles, etc)
-Slowly visited attractions at my own pace, only choosing those with little to no wait
-Stopped often to sit, put my feet up in the A/C or shade (there are benches and chairs all over the place if you ask)
-Avoided thrill rides like Guardians, Tron, Everest, etc.
-Kept a full water bottle at all times and drinking lots.

All in all, things went well. Disney solo was much less stressful than being at home with all my kids, lol, so I didn't find my heart symptoms to be unmanageable.

These are great suggestions. Everyone is different, but Rock n Roller Coaster and Tower of Terror were like tilt table tests for my daughter, so if OP is wanting to try thrill rides, would try to wait til the end of the day and salt it up before and after. We like saltstick fast chews, but always have salt packets handy, too.

 

[5kidsmommy]

My daughter has POTS. When she was young we just pushed her in a wheelchair but now she uses a scooter. Most of the lines are wheelchair accessible, if not they will send you to an alternate entrance. Good luck!