Advice for coping at the park

[Daisybell911]

i have a disease called Sarcoidosis. Its an autoimmune disease and boy, is it giving me a hard time lately and I'm really getting scared about being at the parks with it. Two years ago when I was at WDW last, I ended up leaving the parks early and not seeing everything That I wanted because the joint pain and swelling became unbearable. I even lost a whole day because walking for two days killed me and I had to stay in bed. I'm fine walking short distances but after about two hours, I'm in pain. About 8 hours is my max. Being there for seven days is starting to terrify me. It's not just the joint pain, swelling and fatigue that kills me, it's my lungs. This is a lung based disease. The hotter and more humid it gets, the less I can breathe and I start to cough horribly. I don't do nearly as good with the heat as I did before I was diagnosed.


I don't use a scooter when I'm at home. I just go out in small bursts and then rest and hurt for the rest of the day. But I'm getting more hermity

Does anyone have any suggestions how to tackle the park? I know I have to take lots of breaks. Any good places that you know of that I can get AC? It's the only way I can breathe half decently. I don't think I'd qualify for a DAC card because I don't have cognitive disabilities but waiting in the heat is going to kill me. But Going to the park is my happy place and I really want to enjoy it.

 

[wilkeliza]

First speak with guest services as the DAS is not just for those with cognitive based disabilities. While at first glance yours sounds like a mobility issue it really is not. As you pointed out it is in the lungs and is more about long exposure to the heat on top of the mobility. With that said it is always best to have a back up plan in case they say no to the DAS and of course for what to do while you pass the time on the DAS.

There are many suggestions one could make. Even if you get the DAS I would strongly consider a ECV rental from a 3rd party. They are cheaper and lighter then the park rentals and can be used on the buses and at the hotels.

Cooling towels to keep you body temperature lower. If you get a ECV you can get ones that have an umbrella/shade screen on the top. Get one of those baby stroller clip on fans and put one on the ECV to help keep you cool.

Unfortunately I have no clue what to do for humidity. I'm not sure how to make it easier to breath in it as it is rough on me sometimes and I'm mostly okay (possible mild asthma).

 

[gap2368]

I only have a minute but here are a few things


I would rent and ECV to help with mobility problems. Plane FP for ride where the line is out side and maybe a meal for the heat of the day in AC it is ok to go and rest if you need to all the parks have a first aid with AC and beds if need be. I have 3 different problem with my lungs and all 3 the heat make it worst and for me the DAS dose not help most of the time I am not saying not to talk to GR but for me it make this part of my disability warts

With 7 days I would plan on a rest day or at lest hale rest day.

 

[Betty Rohrer]

i have a disease called Sarcoidosis. Its an autoimmune disease and boy, is it giving me a hard time lately and I'm really getting scared about being at the parks with it. Two years ago when I was at WDW last, I ended up leaving the parks early and not seeing everything That I wanted because the joint pain and swelling became unbearable. I even lost a whole day because walking for two days killed me and I had to stay in bed. I'm fine walking short distances but after about two hours, I'm in pain. About 8 hours is my max. Being there for seven days is starting to terrify me. It's not just the joint pain, swelling and fatigue that kills me, it's my lungs. This is a lung based disease. The hotter and more humid it gets, the less I can breathe and I start to cough horribly. I don't do nearly as good with the heat as I did before I was diagnosed.


I don't use a scooter when I'm at home. I just go out in small bursts and then rest and hurt for the rest of the day. But I'm getting more hermity

Does anyone have any suggestions how to tackle the park? I know I have to take lots of breaks. Any good places that you know of that I can get AC? It's the only way I can breathe half decently. I don't think I'd qualify for a DAC card because I don't have cognitive disabilities but waiting in the heat is going to kill me. But Going to the park is my happy place and I really want to enjoy it.

I second looking into offsite ECV rental even if you don't use at home. one thing to remember an ECV is a tool, would you ask someone who needs glasses to leave them off? use you short bursts a your resort and use the ECV o get around the parks. look at it as a place to rest any time you need. it is for a different reason but there have been trips where I have had to use the ECV at Disney and not at home. try it once

 

[redberyl]

Lots of people who don't use scooters in their daily lives do need the at Disney. It sounds like that would be the most helpful thing you could do for both the pain and the trouble breathing

 

[Tozzie]

i have a disease called Sarcoidosis. Its an autoimmune disease and boy, is it giving me a hard time lately and I'm really getting scared about being at the parks with it. Two years ago when I was at WDW last, I ended up leaving the parks early and not seeing everything That I wanted because the joint pain and swelling became unbearable. I even lost a whole day because walking for two days killed me and I had to stay in bed. I'm fine walking short distances but after about two hours, I'm in pain. About 8 hours is my max. Being there for seven days is starting to terrify me. It's not just the joint pain, swelling and fatigue that kills me, it's my lungs. This is a lung based disease. The hotter and more humid it gets, the less I can breathe and I start to cough horribly. I don't do nearly as good with the heat as I did before I was diagnosed.


I don't use a scooter when I'm at home. I just go out in small bursts and then rest and hurt for the rest of the day. But I'm getting more hermity

Does anyone have any suggestions how to tackle the park? I know I have to take lots of breaks. Any good places that you know of that I can get AC? It's the only way I can breathe half decently. I don't think I'd qualify for a DAC card because I don't have cognitive disabilities but waiting in the heat is going to kill me. But Going to the park is my happy place and I really want to enjoy it.

Last year was the first year I went and needeed a scooter also due to Autoimmune disease and what I figured out is taking breaks is in the height of the sun I went to First aid and explained my situation and asked if I could lay down for an hour or so. The nurses were great and they did have AC the reason I didn't go back to the room is my family would have wanted to come with me to make sure I was okay and I didn't want to spoil their day
In Epcot I would also go into the American Pavilion great air conditioning as well as the movie in china and the one in Canada If you just need to cool down in Epcot you have the land pavillion and the living seas. Magic kingdom The hall of Presidents if it is open you can go in there .

Last year the heat really got to me and a Janitor saw me in the restroom and asked me if I was okay I told her yes I a minute latter she brought me a cloth that was wet and ice cold (felt good)

One other place to cool off, I see you are going to be there during Food and wine the festival center will be open all day it in future world near test track. You wander around there to cool off

 

[arminnie]

I started to suggest that you go when it was cooler until I saw that this is your honeymoon/birthday trip. My anniversary and birthday (5 days apart) are both about 4 months away so I know how one can't change those dates. We went to WDW for our honeymoon too.

You should definitely get the ECV - but I also think you should ask for the DAS because of the heat issues affecting your lungs and the need to wait in air conditioning. That sounds reasonable to me.

I have a dear friend who has had pulmonary Sarcoidosis for many, many years. But it should be encouraging to you that she just celebrated her 91st birthday. She is now on oxygen with a walker - but shoot she's in her 90s. We go out to lunch all the time.

 

[gap2368]

OP now that I have more time,

1 as other have said look at the ECV as a tool to help you have more fun in a place you love, I would get one from an out side vender so you know you have it and also to be able to use it out side of the park.

2 you are more then welcome to talk to GR about your disability, When I went in the first time I just talked about my problem with the heat, and they told me that a DAS was not for heat problems now I do know some people have gotten them for heat problems so this is up to you.

3 no matter if you get a DAS or not have a good plan to stay out of the heat
booking FP at the heat of the day
in door things like soaring is all in door, space mountain,
take some time to see a show philhermagic COP at the MK
make an ADR for the heat of the day and stay for a bit to rest I love the place at the sea in EPCOT ( I forgot want it was called)
it is ok to rest either at the resort, or first aid, ( I know I have to have rest time built in do to my Disnabilities )
RD when it is cooler
stay late if the parks are open late ( this is where taking a nice rest really helps)

4 something to help you keep cool

hat or a small umbrella to keep the sun off you ( and be careful where and when you open your umbrella
fain and one with a mister
cooling towels I like O2cool or s wash cloth and get some free ride water and to get it really cold
for me the Columbia omni freeze really works so I try to wear some.
stay hydrated

 

[mamabunny]

@Daisybell911 you've gotten some great advice - I don't have much to add, other than this:

Think about changing the *way* you do WDW; Maybe get up early, and do rope drop every day, and do as many activities as you can before the heat and humidity start to take their toll.

When it *starts* to become uncomfortable - STOP - and go back to the Resort. Take a break; take a nap in your room... or go sit in the Lobby and people-watch. Or go have a lovely, leisurely mid-day meal at the Resort. Whatever you do, stay in the cool as much as you can until the sun starts to go down, and the air becomes more tolerable - and you can return to the Parks for the rest of the evening.

Consider also getting the new Express transportation pass, so that you can quickly and easily Park hop - and by all means, use the ECV. Every step is precious to you; let the ECV do the work for you, so that you can have more fun! And don't you dare worry about what anyone thinks of you for using the ECV; your chances of seeing anyone from WDW again are minuscule; you have better odds of winning the lottery and getting struck by lightning on the same day!

Congratulations! May your honeymoon be everything you wish for, and more!

 

[DisneyOma]

You can go to First Aid to rest in the AC as well. Definitely rent a scooter. Luckily, most of WDW's queues are inside covered, shaded, etc.

 

[charmed59]

Perhaps you should save your FPs for outdoor lines and use the air conditioned standby lines to get a break from the heat and humidity. However, the only air conditioned line I can think of off the top of my head is Soarin. Are there others?

 

[gap2368]

Perhaps you should save your FPs for outdoor lines and use the air conditioned standby lines to get a break from the heat and humidity. However, the only air conditioned line I can think of off the top of my head is Soarin. Are there others?

Yes there are other in door lines

MK

Space mountain
I think 7DMT has about half indoor ( I do not know since I use the DAS)


at EPCOT

FEA

soaring
TT
imagination
Ellions insiders of energy
seas
Mission space
living with he land

HS

TSMM
star tours
Great movie ride maybe mostly in doors ( agin I use the DAS)
I know RnR is out door but covered

AK
dianasours is indoors.

not sure about the shows at AK

Agin I would try to FP lines that are long and out door ( maybe use your FP between 10:30-12:30 have lunch and then do some indoor lines and then if need be go back to your hotel room for maybe 3-6 to rest at day or two and then back out to the park for the evening, and do not forget that once you use your 3 FP you can get another one, this is really easy at the MK to get a good one.

 

[Daisybell911]

WOW GUYS!!! Thank you SO much! I really appreciate the great ideas! I didn't know about first aid and being able to rest there if I need to. That's a great option. Also, I never even considered doing the fast passes that way and it makes a lot of sense so I'm definitely doing that! I booked my ECV and it breaks my heart to use it (who likes to admit that their body doesn't always do what you want it to). I got it from Walker so I'm hoping for good things with them. I did book the DxDP since it forces me to sit down in the AC to eat and rest for a while. There was a time that I was a Rope Drop to Kiss Goodnight kind of girl without a break. I think those days are long gone but if I rethink how I do it (as @mamabunny suggested), I can have just as good as an experience.

I'm writing all these tips in my Disney book tonight!!!

 

[Paula Sedley-Burke]

You got some very good advice I am sorry to hear about your condition. I also have an autoimmine disease. Not easy. One thing to add is think about where you stay. I find the closer I am the easier to get back for breaks.

 

[gap2368]

WOW GUYS!!! Thank you SO much! I really appreciate the great ideas! I didn't know about first aid and being able to rest there if I need to. That's a great option. Also, I never even considered doing the fast passes that way and it makes a lot of sense so I'm definitely doing that! I booked my ECV and it breaks my heart to use it (who likes to admit that their body doesn't always do what you want it to). I got it from Walker so I'm hoping for good things with them. I did book the DxDP since it forces me to sit down in the AC to eat and rest for a while. There was a time that I was a Rope Drop to Kiss Goodnight kind of girl without a break. I think those days are long gone but if I rethink how I do it (as @mamabunny suggested), I can have just as good as an experience.

I'm writing all these tips in my Disney book tonight!!!

I too was a park open to park close kind of person, but now if I do this the next day I either get the paramedical called for me or I get to go to the ER, both are not fun. One more thing just because you have an ECV dose not mean you have to use it all the time, you can park it ( and ask the CM where if you do not know) and walk around the stores some, maybe do one of your FP rides or a short line, since you can walk this may help you not to get so stiff.

practice with the ECV before you go in the park at your hotel just 5 to 10 minutes of seeing how it goes, stops, turns helps a lot. maybe bring a scarf or something so that you can find it easer if you do decide to walk a bit. ( and the CM will be moving them some to make room for more ECV)

Are you taking the disney buss if you are I would practice going straight ( you will do this to get on the bus) making a 90 degree turn ( agin you will do this on the buss) and then patice going straight and backing up in to a spot ( just like you do when you parral park in a car) this really dose help if you do it once or twice before getting on the bus. most CM will not drive your ECV but most will help you things like turn your wheel this way back up a little more, pull forward. Thing like this. if some one else is with you they can do this if you feel they will be better. you maybe give a chose if you want to stay in your ECV on the bus I would not as they can tip over easey

Turn it off when, witching the parade, people watching, trying to decide what to do next, not moving even in lines this will help with batterie life, some times when you eat you can charge it so if you feel you need to you can ask. but an ECV should last you most of the day (8-10 hours at lest if you turn it if) do not over load your ECV with extra stuff the more weight the more the battier will die faster, but bring what you would carry if you did not have an ECV

bing some thing to cover the ECV if/ when it rains trash bags work great and a poncho for you, and try not to drive in puddles that could get the batteries wet, ( if there are small puddles that are left over from then cleaning the ground the night before this is fine) go slow

you might want to bing something while to sit on like a towel a black set in the FL sun for an 30 minutes if not fun to sit on.

 

[Betty Rohrer]

WOW GUYS!!! Thank you SO much! I really appreciate the great ideas! I didn't know about first aid and being able to rest there if I need to. That's a great option. Also, I never even considered doing the fast passes that way and it makes a lot of sense so I'm definitely doing that! I booked my ECV and it breaks my heart to use it (who likes to admit that their body doesn't always do what you want it to). I got it from Walker so I'm hoping for good things with them. I did book the DxDP since it forces me to sit down in the AC to eat and rest for a while. There was a time that I was a Rope Drop to Kiss Goodnight kind of girl without a break. I think those days are long gone but if I rethink how I do it (as @mamabunny suggested), I can have just as good as an experience.

I'm writing all these tips in my Disney book tonight!!!

if you park ECV in sun most have a seatback that fold down. fold back down if you can. seat not as hot when you return. also a poncho to cover seat of parking outside and rain. use your new tool to help you have a great trip