Fresh MS Dx and Summer Trip

[Roxyfire]

I agree with this, and this is why I posted that it would depend more on your prioritized need whether DAS or mobility device was most important. However, after being told I was just flat out WRONG for stating it, I decided not to engage because I don’t argue with people on the internet. But, this is why I said what I did. I have a very rare disease that has a lot in common with MS. For me, I can walk 10 miles per day and not get tired, but I cannot tolerate heat very well. A mobility device would not be appropriate for me, but in some cases a DAS might (so far I have not needed any accommodation at WDW, but I could someday.). Every time DAS is mentioned, I feel like there is a large group that are out to tell you it’s the wrong choice and make it sound like you are trying to abuse the system or something. There is honestly no advantage to using a DAS if you were to “cheat the system.” Therefore, there is no reason not to use it if it seems like it would meet your needs the best. If you think it’s the best option, I would say to go for it without feeling guilty or judged.

*Also, side note: I am 40 years old and very physically fit. There are potential occasions I can see where I would need to sit instead of stand in line due to my illness. Still, I do not think a mobility device is the “right fit” for me. If I needed to sit, I could sit on the ground and be just fine, but that really isn’t safe to do in line. There are some places it would be okay to do, though (I’m the mom of 5 young kids...I’ve done this for various reasons MANY times.). I think you should be able to judge your own needs. That’s all.*

Thank you for this, I am under 40 and really this is more of a shock than anything else. My doctor did say temperature regulation would probably be more key than say getting a scooter. In fact I've probably had this for almost 5 years and just now found out about it. I often do what you do and sit in the line or lean up on things. So the DAS and cooling items will probably be my options because I don't want to slow my group down or miss out on anything.

 

[OurBigTrip]

I have to disagree that this is a mobility issue. As someone who is extremely temperature intolerant, I can assure you that heat affects a person whether they are sitting or standing. Oftentimes, heat is a really big issue for us Warriors. For this reason, I think it's absolutely appropriate for the OP to request DAS. They will need to sit Out of the Heat after a certain point in their day. Otherwise, the excessive heat can & most likely will bring on a lovely flare of agony that would prevent them from enjoying anymore of their vacation, and can ultimately cause further damage to their health.
I can tell you absolutely 110% that heat intolerance is something that isn't helped by an ECV, wheelchair or any other mobility device. OP, I do encourage you to request DAS. The last thing you want is to bring on a flare & more damage to your nerves. You aren't taking anything away from anyone else by being able to sit in a cool spot & get on the attraction at the same time you would have if you had waited in the dangerous heat. You aren't "line jumping" or getting on the attraction with no wait. You aren't cutting anybody off or slowing anyone down. It's obviously not my place to say, but I don't want you to be discouraged by other people's judgements either.

Where are the cool places to sit?

 

[treemi01]

Where are the cool places to sit?

I’m not the person who posted this response, but assuming you don’t actually need a chair or bench and instead are looking for a cooler area, I would say that many rides exit into or are nearby a store or photo area. Most of these are indoors and air conditioned. If this is not the case for the ride you are waiting for, there are many stores and restaurants in the park, and you are rarely more than a few yards away from one.

 

[mamabunny]

...So the DAS and cooling items will probably be my options because I don't want to slow my group down or miss out on anything.

All I want to say is this: When I had to finally start using a mobility device at WDW, I didn't realize until that moment how much I had slowed down *my* group, because I had to stop all the time to sit, to cool down, to take a break... With the mobility device, it extended my ability to keep going through the day by a hundredfold, easily. In fact, at the end of many days, I was still ready to go go go, and my group was begging to go back to the Resort and take a break.

There was another unexpected bonus: Because I was in better shape at the end of every day, I was also in better shape the next day - I didn't have to spend an entire day, every other day, at the Resort trying to recover from a single day in the Parks. My pain was less, my exhaustion was less, and overall, I was in much better shape then when I tried to walk on my own.

It's tough. It really is. I had to go through a grieving process. I have posted here before about how I cried when I finally broke down and agreed to use an ECV at WDW. I hated it, and quite frankly, I still do hate it all these years later. But I would rather sit my butt on that machine, and go have fun, instead of just... sitting all over, and making everyone wait for *me* because I'm too proud to use the tool at my disposal.

You don't have to use the mobility device anywhere else in your world - but at WDW, you may find that it enables you to go the (average) distance of 3 to 10 miles *per day* that other Guests can go.

It doesn't matter if anyone sees you using it, because you will never see those people again. And even if you did see them, who cares? It's just a tool that you will be using to accomplish a goal. That's all. You don't pound in a nail with a stapler, right? You use a hammer. The hammer is the tool to get the job done. At WDW, for some people - maybe you included - the tool to use is a mobility device. It's not a bit different than using a calculator to do math, or glasses to see better.

I hope you have the best trip possible, and I hope that regardless of what you decide to do, that you find a way to be as safe, and healthy and comfortable as possible

 

[gap2368]

All I want to say is this: When I had to finally start using a mobility device at WDW, I didn't realize until that moment how much I had slowed down *my* group, because I had to stop all the time to sit, to cool down, to take a break... With the mobility device, it extended my ability to keep going through the day by a hundredfold, easily. In fact, at the end of many days, I was still ready to go go go, and my group was begging to go back to the Resort and take a break.

There was another unexpected bonus: Because I was in better shape at the end of every day, I was also in better shape the next day - I didn't have to spend an entire day, every other day, at the Resort trying to recover from a single day in the Parks. My pain was less, my exhaustion was less, and overall, I was in much better shape then when I tried to walk on my own.

It's tough. It really is. I had to go through a grieving process. I have posted here before about how I cried when I finally broke down and agreed to use an ECV at WDW. I hated it, and quite frankly, I still do hate it all these years later. But I would rather sit my butt on that machine, and go have fun, instead of just... sitting all over, and making everyone wait for *me* because I'm too proud to use the tool at my disposal.

You don't have to use the mobility device anywhere else in your world - but at WDW, you may find that it enables you to go the (average) distance of 3 to 10 miles *per day* that other Guests can go.

It doesn't matter if anyone sees you using it, because you will never see those people again. And even if you did see them, who cares? It's just a tool that you will be using to accomplish a goal. That's all. You don't pound in a nail with a stapler, right? You use a hammer. The hammer is the tool to get the job done. At WDW, for some people - maybe you included - the tool to use is a mobility device. It's not a bit different than using a calculator to do math, or glasses to see better.

I hope you have the best trip possible, and I hope that regardless of what you decide to do, that you find a way to be as safe, and healthy and comfortable as possible

A little off topic but I wanted to thank you @mamabunny for this I read this after my first myBe second solo trip to Disney both were miserable I was having meltdown left and right becuse of all the noise I tried the in ear plugs and they worked ok but held the time they either hurt my ears or I could not get them in fast enough a guest saw me trying to get them in and say I should buy the over the ear ones I was like no way we’ll i read one of your post ( like the one you just posted) and was like why am I sitting off having meltdown becuse I am too stubborn to use a tool to make my vacation better and you know what it has been so much better no perfect but so much better so think you for this. Ok sorry back to the topic at hand.

 

[serenitynow]

As a fellow MS Warrior, I welcome you to the struggle. MS - the gift that keeps on taking. First, try to take a deep breath and relax. You can do this vacation with MS, just pay attention to your body. Heat is the enemy. Heat will make all of MS symptoms worse and depending on your medication regime, you may struggle with photosensitivity. Look into cooling devices, towels, vests and the like. Always wear a hat and have a small spray bottle to refill with water to spray on your face and neck. Walmart and Amazon both sell small personal fans that you can wear around your neck. Carry a cotton bandana that you can wet and place around your neck if you feel overheated. Travel with a travel cup that you can keep filled with ice water. Every counter service restaurant at Disney will give you free cups of ice water. Drink, drink, drink. For a quick way to lower your body temp, pour some ice water on the bandana and place or tie it around your neck.

I think the hardest part of a new diagnosis is accepting that your body has changed. You will not have the same stamina that you once had. It’s natural to want to push through the symptoms and try to “beat” the MSMonster,as my kids call it, but don’t. There is nothing to win by overdoing what your body will tolerate. You don’t want to risk having a MS flare. You can’t beat the MSMonster, you just have to outsmart it. Overdo it and your body pays the price.

Get the ECV. Not only for mobility and stamina the assistance device provides, but also because you will have a place to sit in long, hot lines. Disney has removed most of their park benches where once people could rest their weary bodies in between rides in the parks. Another advantage to the ECV is that you can drive it to places that are in the shade to cool down. Plus you won’t have to feel guilty that you are slowing the other people in your party down. You’ll want to have a shaded place to sit and wait for the other members of your party to do rides you may want to skip.

Rent the ECV from an offsite provider so you will have it around your resort and for that long, long walk back to your room at the end of a hot, exhausting day. Also, Disney can run out of ECVs to rent, especially late in this he day or if you park hop, the next park may not have any ECVs to rent. It is a long, hot walk from the gates of the parks to the bus stops.

Keep out of the direct sun, stay hydrated and do not get overheated. MS affects everyone differently so just pay attention to what your body is telling you. You can do this thing, just be more self aware of your body’s needs to help keep the MSmonster at bay.

 

[gap2368]

I believe it was castle couture in the MK about 20 feet in from the door right infront of the registrar was a vent that blow very and I do mean very cold air it was so nice to stand their for a minute and sock in the cold air. So if you need some place to cool down enjoy this spot. You can also ask the cast member that work in the store if they know any other very cool spots like this (!this is how I found this spot is when i found one in another store the CM was like oh if you think this is good you should try this one it has the coldest air in all of the MK. and she was right).

 

[Aniel]

Get a DAS pass, if you weren't already planning on doing so. I was skeptical (and probably a little too proud), but it so helpful on my last trip (in the process of diagnosing MS at the moment). By being able to get out of the heat when I needed to, and sit down instead of standing in line, it meant my poor nerves and muscles weren't nearly so fried by the end of the day as they would be otherwise.

Hi I have ms as well and am going in 2 weeks when it’ll still be hot and humid. I see that your das card was accepted! What did you let the Disney staff know?

 

[lanejudy]

What did you let the Disney staff know?

DISboards policy does not allow sharing of "scripts" or "tell them this..." with regards to the DAS. You will need to let the Guest Relations CM know what it is about your MS that makes it hard to wait in a regular queue environment. What that is for you may be different than what is challenging for another with the same diagnosis.

If you let us know your concerns, we can offer some suggestions for coping or tips for getting around the parks. One big thing I recommend is that IF you receive a DAS, what will you do while waiting? How do you picture your days (or time) in the parks? How many hours are you planning? DAS allows you to wait outside the queue, but does not provide a place for you to wait, and more importantly does not provide for a place to sit or rest anywhere. DAS is a great tool, but needs to be used with other preparation and planning as well.

Enjoy your vacation!

 

[Simba's Mom]

It's tough. It really is. I had to go through a grieving process. I have posted here before about how I cried when I finally broke down and agreed to use an ECV at WDW. I hated it, and quite frankly, I still do hate it all these years later. But I would rather sit my butt on that machine, and go have fun, instead of just... sitting all over, and making everyone wait for *me* because I'm too proud to use the tool at my disposal.

mamabunny, thank you so much for describing what I felt and sometimes (almost all the time) still feel. I was on a solo trip, but I was so devastated the first time I had to rent an ECV, I had to call home and share my misery and tears with my family.
To the OP, although I don't have MS so I can't truly identify with what you're going through, my neurologic condition is similar so that it's been recommended that I go to MS support groups. Good luck!

 

[fabfemmeboy]

Hi I have ms as well and am going in 2 weeks when it’ll still be hot and humid. I see that your das card was accepted! What did you let the Disney staff know?

While doing my best to steer clear of the ban on scripts or "tell them x", I will say that I let the CM know about my issues, particularly when in hot areas and enclosures. The CM suggested using a wheelchair, and I replied with my concerns about that because in my case it wouldn't help enough (if I did, I would have just rented one). They asked a few questions I would feel in a line, and I answered honestly, and they gave me the card. Everyone's mileage on these varies, so I can't say for sure if a different CM that day would have given me one, but I'm glad I got it as it really reduced my anxiety and let me enjoy the park more. At the very least, I think it's worth trying, but know that it's not a sure thing.

 

[Tonydana]

I was just diagnosed with MS and it's still very early and my head is swimming. They said I need to be careful with fatigue and overheating. But we have a trip in June and it's not my first rodeo on that time of year. I know it's gonna be a struggle. Is there anyone who can give me some advice? We already do rope drop, leave for the afternoon, and come back at night. Are there things I should buy now and bring with me just in case? Any advice would be appreciated!

hi there.. i too have ms and did a trip in august 2 years ago. drink lots of water. i also bring baby wipes with me and use to wipe my face and neck. i have a cooling towel i use as well. works wonders. we also go early in morning and back to resort after lunch for a bit.. then back to parks after that.. feel free to reach out with anything!!