At the parks with POTS, dysautonomia, orthostatic hypotension

[perkinsrose]

I'm wondering about experiences of anyone or family members of POTS patients or dysautonomia patients in the parks...

Wheelchair use, cane with seat, ?

Was it doable with breaks?

 

[maxiesmom]

There have been reports that cane seats are no longer allowed, due to how unstable they are. Another poster recently witnessed someone injured when they fell off of their can seat, so I wouldn't go that route.

 

[aaarcher86]

There have been reports that cane seats are no longer allowed, due to how unstable they are. Another poster recently witnessed someone injured when they fell off of their can seat, so I wouldn't go that route.

I wouldn't go off of that one posters report

But do agree, I'd go with a rollator for stability.

 

[perkinsrose]

Regarding small seat on "cane chairs" I suppose this would be my argument...scroll down...
(if we did not have a wheel chair with us...)
Though this is a few years old..

www.disboards.com/threads/epcot-ada-violation-fyi.3477846

 

[aaarcher86]

Regarding small seat on "cane chairs" I suppose this would be my argument...scroll down...
(if we did not have a wheel chair with us...)
Though this is a few years old..

www.disboards.com/threads/epcot-ada-violation-fyi.3477846

I'm not really sure what you mean? Cane chairs at allowed because they're considered a medical device.

That thread is about someone sitting in a tripod camping style chair which is not medical in nature, or allowed.

It's also from January. Not a few years old...

 

[lanejudy]

My understanding is that a cane with seat is allowed for use as a cane. It may or may not be allowed for use as a seat. A rollator or wheelchair may be better options if a seat is necessary. WDW does not allow "folding chairs" including those tripod seats.
Enjoy your vacation!

 

[perkinsrose]

aaarcher86, I was trying to quickly reply and I should've made myself more clear....

(referencing that other thread--maybe I saw a date on someone's join date instead of the thread ? or the original instead of most recent? anyway...)
I meant the comments about cane/seats being allowed or not, not the person falling off.
Someone was saying how they would respond if they were questioned about it at entry. That is what I was referring to.

I would rather avoid the wheelchair rental unless necessary though we have done that with an outside agency for another need.
I would still love to hear from anyone with POTS knowledge. Thank you everyone.

 

[minnie mum]

Given your medical problems, and their symptoms, I would definitely not recommend something as inherently unstable as a cane seat, should you need to sit and rest. Should you feel weak or faint, trying to maintain your balance on it would be very difficult. If you don't want to rent a wheelchair, consider using a rollator instead.

 

[gap2368]

There have been reports that cane seats are no longer allowed, due to how unstable they are. Another poster recently witnessed someone injured when they fell off of their can seat, so I wouldn't go that route.

They are allows as fair as I know but I would not use one for a set as I have seen someone fall and break there arm ( yes I am not a dr and did not exray her arm but I will just say some breaks you do not need an extra to tell it is broken and I will leave it at that)

 

[aaarcher86]

aaarcher86, I was trying to quickly reply and I should've made myself more clear....

(referencing that other thread--maybe I saw a date on someone's join date instead of the thread ? or the original instead of most recent? anyway...)
I meant the comments about cane/seats being allowed or not, not the person falling off.
Someone was saying how they would respond if they were questioned about it at entry. That is what I was referring to.

I would rather avoid the wheelchair rental unless necessary though we have done that with an outside agency for another need.
I would still love to hear from anyone with POTS knowledge. Thank you everyone.

Maybe a rollator?

 

[perkinsrose]

Anyone have family member or self with POTS or dysautonomia that did parks? Would love personal experiences. Thanks!

 

[lolcow]

Me! I'm going in a few weeks. I can report back if you like? I have mobility problems, too, so I'm getting an ECV.

 

[StilAPrincessAtHeart]

I deal with dysautonomia, specifically Orthostatic Hypotension, Innapropriate Tachycardia, Blood Pooling in my extremities, and Syncope. I did 3 days at DLR last summer and it was difficult, but not impossible. I did not know that I was dealing with dysautomia at the time, but some of my issues in the park make sense now. The hardest for me were the moments when lines didn't move for a bit and then parades where I had to stand. It was packed due to the 60th and the new Paint The Night Parade, so they packed us in like sardines. The worst was that they made us stand, packed in for a good 20 min. before the parade started. I had to just sit on the ground in a sea of people while staring at their feet until the parade started. It was so claustrophobic, but better than passing out.

This Dec. will be my first time at wdw since dealing with my dysautonomia and here are some of my plans:

-Rent a Rollator locally if I begin to feel overwhelmed a day or 2 into it.
-take rests at first aid if need be. Like most, many of my symptoms don't ease up unless I am supine. Sitting is only slightly better sometimes, especially after many hours of being upright.
-take an afternoon rest at the hotel
-bring ear buds as I have some noise tolerance issues
- show up for parades extra early to get a seat on a bench, curb or ledge
-drink more water than seems humanly possible, and bring salt capsules

 

[perkinsrose]

Me! I'm going in a few weeks. I can report back if you like? I have mobility problems, too, so I'm getting an ECV.

THANKS! Would love to hear whatever you are willing to share! I hope your trip is everything you want it to be.

 

[perkinsrose]

I deal with dysautonomia, specifically Orthostatic Hypotension, Innapropriate Tachycardia, Blood Pooling in my extremities, and Syncope. I did 3 days at DLR last summer and it was difficult, but not impossible. I did not know that I was dealing with dysautomia at the time, but some of my issues in the park make sense now. The hardest for me were the moments when lines didn't move for a bit and then parades where I had to stand. It was packed due to the 60th and the new Paint The Night Parade, so they packed us in like sardines. The worst was that they made us stand, packed in for a good 20 min. before the parade started. I had to just sit on the ground in a sea of people while staring at their feet until the parade started. It was so claustrophobic, but better than passing out.

This Dec. will be my first time at wdw since dealing with my dysautonomia and here are some of my plans:

-Rent a Rollator locally if I begin to feel overwhelmed a day or 2 into it.
-take rests at first aid if need be. Like most, many of my symptoms don't ease up unless I am supine. Sitting is only slightly better sometimes, especially after many hours of being upright.
-take an afternoon rest at the hotel
-bring ear buds as I have some noise tolerance issues
- show up for parades extra early to get a seat on a bench, curb or ledge
-drink more water than seems humanly possible, and bring salt capsules

Thank you so much. As you know, while there is such a range of experiences per patient with dysautonomia and even POTS, this is just the info I was looking for. I so appreciate you sharing your challenges.

 

[seashell7290]

I am familiar with pots and dysautonomia and I can say hydrate, hydrate, hydrate! use rope drop and fp+ to wait in the shortest lines possible. I have issues with controlling body temp so I wear light weight clothing and a hat always. Plan ac breaks between attractions. For fireworks and parades it might be useful to have a wheelchair or rollator to know you can have a seat.
I don't know how severe your condition is but staying active has helped me. I sometimes go for a brisk walk in the morning to maintain some fitness. You know your body best so listen to it! Have a great trip!

 

[lolcow]

THANKS! Would love to hear whatever you are willing to share! I hope your trip is everything you want it to be.

Thank you. I am happy to share. I'll be back on 27th May after a 10 day trip. I wasn't as unwell as I am now when I booked but I think it's do-able with strategies and regular rest breaks.

I don't know what your general health and mobility is like but as someone mentioned, keeping your fitness up is really important. For me, it's 10 minute walks 3x a week which sounds a little pathetic but I've got a lot of joint damage from another condition, so it's progress for me. My cardio said to drink 2.5-3 litres of fluid a day, more when it's hot. Is there anything you are particularly worried about?