1st trip going with anklosing spondylitis

[xtinewashere]

Hi all,

I am very excited to finally be going to disney with my husband and 3 children. we'll be going in the fall for 10 days. we are staying on site at CBR in a waterview room. He have the FD plan included and hope to be able to have a good time and see lots of things.

This is our first big trip in over 11 years.. we have never flown with the kids so it's all new. It's also my first trip since being diagnosed with AS 5 years ago.

I do okay managing my symptoms and I am normally ok unless I'm in a flare. the hardest thing for me to manage is to pace myself. i am so go,go, go while on vacation and normally want to see and do everything.

i don't really look for any special allowances for my AS but I am worried about being in an environment that will require a lot of physical activity.

does anyone have any tips? or suggestions on how to pace yourself? i want to see and do a lot but not at the expense of my body.

also- is there anything disney does for visitors with such conditions?

TIA,
Christine

 

[aaarcher86]

What are your symptoms? If they're mainly mobility Disney will recommend renting a wheelchair or EVC. A lot of people need one at WDW even if they otherwise wouldn't because of the 6-8 miles average walking per day.

 

[ACS228]

I have fibromyalgia so not exactly the same issues but I do pay for it when I over do it at Disney. Some things I find helpful:

Wear good sneakers. The extra support seems to help my whole body feel less stress. Also I try not to carry anything bigger than a small pouch to carry my phone and money. After a few hours of walking every ounce feels like a ton.

Go slow! I know you will be excited and want to see it all right away but take your time! Look at all the cool theming, poke around the shops, find a shady bench and people watch. Let your husband and kids run ahead to get in line while you stroll.

Try to see shows in between rides. A cool place to sit gives me a chance to re-energize ...or take a quick snooze! I have slept through The hall of presidents, carousel of progress and Mickey' s philharmagic at Magic Kingdom, the movie in France and the American experience show at epcot. I have heard there are rooms in first aid where you can rest but I have never asked. I guess I feel awkward about explaining exactly why someone relatively young who looks healthy is so tired as to need first aid.

I take over the counter pain meds pretty much around the clock and something stronger when I get back to the room and a muscle relaxer for sleep. I find its best to just take it on a schedule rather than realize when I finally stop that everything hurts.

I start the morning with a good stretch. Like a getting ready to run a marathon stretch. Once I get out and get moving I tend to loosen up.

Maybe plan a few break days in between park days where your husband can take the kids around the resort while you do nothing more strenuous then sit in a lounge chair.

Have a great trip!

P.S. I have never rented an evc but they are available if you really need one.

 

[StitchesGr8Fan]

I second the Go Slow idea. You have 10 days. With the sad states of Hollywood Studios and Epcot you will have plenty of time to see things without pushing yourself past your limits.

My BFF has AS and Fibromyalgia and is taking her first trip this fall. She's building up her stamina now by exercising and practicing at local attractions. This is also giving her time to figure out the best medication regiment to prevent a flare and treat one if it happens.

Remember that you can always rent an ECV if you find you need it.

 

[sukhakuli]

I have AS also. I guess the only tips I have are to keep up with your meds, listen to your body, and keep on top of your posture and stretches.

I'm worried about our trip coming up, too. I have psoriatic arthritis as well, and if I'm not having a flare I can stagger along OK. But if I have a flare on the trip I don't know what we'll do. Rent a rollator, maybe. I couldn't do an ECV because I can't sit very long or hold the handles to make it go (have major hand involvement, and if my hands lock up, I wouldn't be able to take them off to stop).

Take care of yourself. Iguess that's all we can do.

 

[LuvOrlando]

If you don't have a Person with Disability Card and a Car Tag I'd suggest asking your Dr for one ASAP, get the forms, drop them off and explain what your plans are and I'm sure your Dr will see why its necessary and grant you one at least temporarily. They might give you a hard time at the park when you request a 'Disability Card" at the main desk where you enter the parks because they are just reg people at the desk with no medical training whatsoever (they gave me some stiff resistance) but insist on being accommodated and they won't risk the liability of refusing you as long as you have that card... the official position is they SAY "you don't need proof" but you really do because without it they are way too comfy saying no, same goes for room selection at the resorts. I have the cards permanently now but if you aren't comfortable with that you can ask you Dr for temporary placards. Its one of those things that's fine until it isn't and when it's bad its really really bad.

It is the law that they need to accommodate people with disabilities, don't let anyone make you feel bad about it - I don't. Hugs & enjoy yourself

 

[lanejudy]

... They might give you a hard time at the park when you request a 'Disability Card" at the main desk where you enter the parks because they are just reg people at the desk with no medical training whatsoever (they gave me some stiff resistance) but insist on being accommodated and they won't risk the liability of refusing you as long as you have that card... the official position is they SAY "you don't need proof" but you really do because without it they are way too comfy saying no, same goes for room selection at the resorts. ...

If you mean the DAS card at the parks, there is no proof required and in fact the CMs at Guest Relations likely will refuse to look at any "proof." There is no official "disability card" from a doctor to show that gets one accommodations, in the parks or resorts. It is true Guest Relations staff do not necessarily have specific medical training and may not recognize a diagnosis or what that means for you; I'm going to guess there are very few people who have any idea what AS is to say nothing of what accommodations might be needed. To request a DAS you must explain your needs (not diagnosis) as they pertain to waiting in a standard queue environment. The DAS allows you and your party to wait somewhere other than in line. If that might help OP's situation, she is welcome to request it at Guest Relations at any of the four major theme parks. However, if the needs are strictly mobility or stamina related, the DAS will not be granted and the accommodation is to use a mobility device.

I agree that if OP has needs related to ability to navigate a parking lot, handicap parking placards/plates are recognized from all 50 states.

Enjoy your vacation!

 

[LuvOrlando]

There absolutely is a very clearly defined "Person with Disability Card" card I have that actually accompanied my placard but unlike the placard this has my name clearly written on it and while I am well aware of the 'official stance' the truth is the girl at the desk in 2013 was very comfortable with telling me no, that is until I stood my ground and produced my Disability card and said "I need to be accommodated with whatever WDW has available for disabled people" and then she grudgingly handed me the DAS if that is what its called. It wasn't a warm and fuzzy, "How can I help you" experience but once I had the DAS noone else questioned me and my trip went ok. The law is the law and noone is allowed to deny disabled people rights regardless of personal opinion

 

[aaarcher86]

There absolutely is a very clearly defined "Person with Disability Card" card I have that actually accompanied my placard but unlike the placard this has my name clearly written on it and while I am well aware of the 'official stance' the truth is the girl at the desk in 2013 was very comfortable with telling me no, that is until I stood my ground and produced my Disability card and said "I need to be accommodated with whatever WDW has available for disabled people" and then she grudgingly handed me the DAS if that is what its called. It wasn't a warm and fuzzy, "How can I help you" experience but once I had the DAS noone else questioned me and my trip went ok. The law is the law and noone is allowed to deny disabled people rights regardless of personal opinion

The law requires accommodations. It doesn't require the accommodations that you desire.

To be honest, it sounds like you didn't qualify but bullied the CM to get what you wanted. The system would have also been brand new at that time.

I don't know the OPs symptoms, but if they're mobility related the accommodation is a wheelchair or EVC with accessible lines. It doesn't have to be desirable to be legal.

 

[LuvOrlando]

You are entitled to your opinions

 

[ACS228]

I don't think you'll need a DAS card. Utilize the fast pass plus system to ride the things you really want. Wait times are posted outside the ride lines so you can decide if you want to stand for that long. In my experience wait times are usually about 8 to 10 minutes shorter than posted. I don't ride Space Mountain or Rock and Rollercoaster as I found they shake you around quite a bit. I don't feel I'm missing anything by skipping them since there is so much else to see and do. The line que for space mountain is pretty cool though so you can walk through and then duck out the chicken exit if your family wants to ride.

Hope this is helpful.

 

[niftywench]

Hi, fellow person with AS!! *high-five*
Pacing yourself, going slow, taking it easy = BEST ADVICE i received before my first trip after diagnosis! I would suggest going to see shows between rides, taking breaks, keeping hydrated and not being afraid to speak up when you feel tired or sore.
Also, the GOOD SHOES. Good support helped me tremendously!
These two things kept me going and able to really enjoy our trip.
Also, being with people who understand what you are going through is great
We got home on May 13th from WDW and it was a blast - now off to plan our first trip to Disneyland!

Have a GREAT time!!

 

[xtinewashere]

Thanks all! Just checking this thread after a long while!! I've been keeping busy at home and planning our trip. 30 Days out!! I am really nervous about ruining this trip of a lifetime... I want to be able to enjoy with my family. I am walking and feeling ok-- but what if I'm not when we're there? It's something I can't control.

I appreciate all your advice and I will rest between rides and I like the idea of going to shows between.

If I need extra support while I'm there will Disney be accommodating? I think if I just know I'll have options I'll feel better and not worry so much. I am not planning on renting a scooter but if I find during my trip I need to, I will. I have very good shoes and will bring my meds. I think our resort has a hot tub and soaking in that might help as well.

Hugs to all my AS/Fibro etc.. friends. Stay strong and thanks for the support!! xo

 

[niftywench]

So excited for you!!
If you think a scooter will help - definitely go for it and don't be afraid to.
I rented one for our last trip, I was recovering from a small toe surgery and had to wear a boot-thing,
and getting that scooter was the best thing that i did. I used it to get around but would walk up to most things on foot.
There was always a good spot to park it, and every cast member i met was accommodating and helpful.
I also liked that i ALWAYS had somewhere to sit
Take care and have an AMAZING, MAGICAL trip!! <3

 

[gap2368]

I would get an ECV O think that would help you out a lot before you go get a few numbers for out side vender cheeper and disney runs out of ECVs also if you need a place to rest first aid is great they have a lot of free things like OTC Nd things like that. I agree with take things slow rest and book your fast passes for long wait rides and maybe for the het of the day

 

[LuvOrlando]

Why does everybody keep trying to push people into wheelchairs? Where is this coming from? People who need wheelchairs have wheelchairs at home people who don't need wheelchairs shouldn't be encouraged to use them on vacation like it's a roller coaster ride. Its so unusual. I've never walked up to an elderly person walking a little bit slow or anyone else in life ever and told them they need to get a wheelchair, or a back brace were ever recommended any kind of medical device . Out of curiosity, do the people who keep encouraging them here do that in real life? If so how did those conversations go? Are the recipients of your advice appreciative of being told they need/should get a wheelchair? Im 100% honest in my question, If it's OK here I would think it would be normal in face-to-face conversations too and I'm very curious how those face-to-face replies work out. To be honest even if I'm limping I don't think I would take it very well but maybe that's just me

 

[gap2368]

Most peoe dose not walk 8 to 10 miles a day and at Disney you can easily for some people they will not need a WC for day today life but the walking at Disney they will

 

[LuvOrlando]

No matter how well intentioned I think medical device/advice should be left to the Dr paitent relationship

 

[minnie mum]

I agree with what I think gap was trying to say. Your statement that anyone who needs a wheelchair at WDW would already have a wheelchair at home is true only for the minority of people who use mobility assistive devices such as wheelchairs, ecvs or rollators while on a Disney vacation. I am one such person. I manage my day to day life quite well with only a cane. But in my daily life at home I do not have to walk anywhere from 5-10 miles every day for a week in heat and humidity to which iam unaccustomed. Having a wheelchair means I don't have to walk as far or stand for prolonged periods in pain. A DAS card is not going to reduce the distances I have to travel in a park day.

There are other guests who have stamina issues due to heart or lung conditions, cancer, MS, the list goes on and on. Their problem is similar. Nt having the physical strength to walk that far or for that long without becoming exhausted or worsening their illness. Again, a DAS is not going to reduce the distances they have tovwalk. A mobility device will.

And quite frankly, I think that the majority of doctors agree with this. Their patient may not need them everyday, but in exceptional circumstances such as a WDW trip, they are a very helpful tool that can be used only for that limited time.

As to your question about making these suggestions in a face to face conversation, yes I've done that. When the person has asked for suggestions, as the OP has done. I can't imagine anyone offering unsolicited advice to a stranger on the street. But that is not the situation on this board. People come to this board with a problem and ask for help finding an optimal solution. And those of us with park experience with similar problems will offer suggestions that have proven helpful.

 

[LuvOrlando]

I don't think you're hearing the point. If you're saying that wheelchairs are very important and a valuable necessity to many people who visit then I'll whole heartedly agree with you. If you're saying that it's a good thing they are available for guests I will also agree with you 100%. If you were also saying that they should always be available to guess if they need them and desire to use them then I also agree.

Here's what I don't agree with however, other people should not invade an individuals personal space by telling them that they 'should' use a wheelchair. Say they are available, say there an option and then let the other person request more information but to pressure disabled people to use a medixal device instead of getting a DAS card is not OK to me. BTW, certain disabilities of which AS is one, means that movement is important but needs to be monitered therefore not all doctors would recommend a wheelchair- in fact they would likely encourage as much movement as is comfortable for the individual. Lack of movement as happens with the wheelchair is actually strongly discouraged because staying still causes immeasureable pain when thr person tries to move again