Fresh MS Dx and Summer Trip

Roxyfire

Is butter a carb?
Joined
Jul 1, 2015
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!
 
Request or rent a wheelchair - better to have it as a backup if you need to rest (or will have more stamina if you are resting instead of standing in lines) than to NOT have it and run out of steam early in the day.
 
Request or rent a wheelchair - better to have it as a backup if you need to rest (or will have more stamina if you are resting instead of standing in lines) than to NOT have it and run out of steam early in the day.

Thank you I will definitely look into that.
 
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.
 
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.


If you need a place to sit then some type of mobility device is best, Disney can not guaranty a set when you need one and depending on when you go a place to sit when you need it might not happen unless you have your own set with you.
 


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.

Not sure when you were there last, but now that all ride lines at WDW are wheelchair accessible (or reasonable accommodations for access can be made), they *generally* do not give DAS passes for mobility issues - anything related to standing in line, walking long distances, fatigue, pain from movement, etc. CM's may vary but now any mobility related issue is generally directed toward mobility aids (ECV or wheelchair).
 
Not sure when you were there last, but now that all ride lines at WDW are wheelchair accessible (or reasonable accommodations for access can be made), they *generally* do not give DAS passes for mobility issues - anything related to standing in line, walking long distances, fatigue, pain from movement, etc. CM's may vary but now any mobility related issue is generally directed toward mobility aids (ECV or wheelchair).

This is true, but I do still think a DAS is a consideration. If you don’t think you will need a wheelchair, I would think about if a DAS might meet your needs. This would allow you to wait away from the heat, and you can always find somewhere to sit nearby if needed. I think either might work, it just depends on your needs. Worried about walking long distances? Then a mobility device might be the best option. Worried more about the heat and needing to sit instead of standing in long lines? Then maybe the DAS is better.
 
This is true, but I do still think a DAS is a consideration. If you don’t think you will need a wheelchair, I would think about if a DAS might meet your needs. This would allow you to wait away from the heat, and you can always find somewhere to sit nearby if needed. I think either might work, it just depends on your needs. Worried about walking long distances? Then a mobility device might be the best option. Worried more about the heat and needing to sit instead of standing in long lines? Then maybe the DAS is better.

DAS won't cover needing to sit instead of standing, that falls under mobility issues. A wheelchair can be used as a place to sit in line and that is the expectation CM's will set.
 
I was diagnosed with MS last year. If you haven't already, look into cooling vests, headbands, neckbands, etc. There are a bunch out there made for people with MS. If your income qualifies, the Multiple Sclerosis Association of America will even send you a free one. There are other organizations that give them out for free too, but the names escape me. I haven't tried any myself, but there are tons of reviews out there.
 
This is true, but I do still think a DAS is a consideration. If you don’t think you will need a wheelchair, I would think about if a DAS might meet your needs. This would allow you to wait away from the heat, and you can always find somewhere to sit nearby if needed. I think either might work, it just depends on your needs. Worried about walking long distances? Then a mobility device might be the best option. Worried more about the heat and needing to sit instead of standing in long lines? Then maybe the DAS is better.
But you're still saying worried about the heat and needing to sit instead of stand in long lines. this is 110% MOBILITY PROBLEM needing a place to sit is a mobility problem 110% of the time this is where you need to make sure you have your own set because depending on where you go you might not find that place to sit. I am have done with someone that had a mobility problem she thought she would be ok without a wheelchair or ECV guess what she was very wrong by around 10:30 - 11 am and the paramedic was called she was in the hotel for the rest of our very short trip and she is not someone I would really think of needing a mobility device (she had been doing some walking at home got to close to 2 miles a day not all at once) but at this time har back started to cramp up and she needed a place to sit and we started to look for something we were in tomorrow land where there is a place to sit but someone was already sitting SO yes this is still a mobility problem the DAS is not for mobility problem and I would not tell someone with a mobility problem to get a DAS becuse you could ruin there vacation if they find them self like my friend lukly we go down a few times a year together she has family down in orlando and she has a finily memebr that worked for Disney for 40 years ( so she has a life time pass and can get family friends in for free) so it was not the end of the world that she miss all of that day and the next day
 
I can attest to the cooling vests. I have dysautonomia & erythromalgia (among some other stuff) which make me super heat sensitive. If the temperature is over about 74 & sunny, out comes the vest. I've even worn it in the house in the dog days of summer..... or after a hot shower.......
There are several "levels" of cooling attire - from wet & evaporate to ones that pump cool water - in between are ones that hold freezer ice packs. The ones I am using is an evaporation one. I got it from Amazon. It's made by Hyperkewl. Don't be tempted to size up because you want body contact with the vest.
The other thing that helps me alot is a very good, super insulated water bottle. I need to drink alot of ice water to keep my core temperature cool. It has to be ICE water, hence need for super insulation like a Yeti or something that states it keeps hot/cold for at least 8 hours. And a good hands -free way to carry it so you don't lose it,lol. (which I have - several times) I carry electrolyte tablets by nuun to drop in my water every other bottle. Too much water without electrolytes can really mess with many of my symptoms.
Sending you good vibes on your trip. It may be a new way of doing WDW, but you might also find alot of Silver Linings because you have no choice but to "stop & smell the roses". Some of my favorite memories are people I met & conversations I had while people watching on a park bench.
 
I was diagnosed with MS last year. If you haven't already, look into cooling vests, headbands, neckbands, etc. There are a bunch out there made for people with MS. If your income qualifies, the Multiple Sclerosis Association of America will even send you a free one. There are other organizations that give them out for free too, but the names escape me. I haven't tried any myself, but there are tons of reviews out there.

Thank you I will look that up

But you're still saying worried about the heat and needing to sit instead of stand in long lines. this is 110% MOBILITY PROBLEM needing a place to sit is a mobility problem 110% of the time this is where you need to make sure you have your own set because depending on where you go you might not find that place to sit. I am have done with someone that had a mobility problem she thought she would be ok without a wheelchair or ECV guess what she was very wrong by around 10:30 - 11 am and the paramedic was called she was in the hotel for the rest of our very short trip and she is not someone I would really think of needing a mobility device (she had been doing some walking at home got to close to 2 miles a day not all at once) but at this time har back started to cramp up and she needed a place to sit and we started to look for something we were in tomorrow land where there is a place to sit but someone was already sitting SO yes this is still a mobility problem the DAS is not for mobility problem and I would not tell someone with a mobility problem to get a DAS becuse you could ruin there vacation if they find them self like my friend lukly we go down a few times a year together she has family down in orlando and she has a finily memebr that worked for Disney for 40 years ( so she has a life time pass and can get family friends in for free) so it was not the end of the world that she miss all of that day and the next day

That's unfortunate that it happened to your friend. I have certainly been looking up scooters and may get one, my friends are very supportive and want me to do whatever helps.

I can attest to the cooling vests. I have dysautonomia & erythromalgia (among some other stuff) which make me super heat sensitive. If the temperature is over about 74 & sunny, out comes the vest. I've even worn it in the house in the dog days of summer..... or after a hot shower.......
There are several "levels" of cooling attire - from wet & evaporate to ones that pump cool water - in between are ones that hold freezer ice packs. The ones I am using is an evaporation one. I got it from Amazon. It's made by Hyperkewl. Don't be tempted to size up because you want body contact with the vest.
The other thing that helps me alot is a very good, super insulated water bottle. I need to drink alot of ice water to keep my core temperature cool. It has to be ICE water, hence need for super insulation like a Yeti or something that states it keeps hot/cold for at least 8 hours. And a good hands -free way to carry it so you don't lose it,lol. (which I have - several times) I carry electrolyte tablets by nuun to drop in my water every other bottle. Too much water without electrolytes can really mess with many of my symptoms.
Sending you good vibes on your trip. It may be a new way of doing WDW, but you might also find alot of Silver Linings because you have no choice but to "stop & smell the roses". Some of my favorite memories are people I met & conversations I had while people watching on a park bench.

I will look up these items. I do have a really nice water bottle and I don't mind taking a lot more breaks. Thanks for the advice
 
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.
 
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.
Please not that I was only talk about when the PP was taking about standing in long lines which is a mobility problem. Also a good number of lines are onside in the AC
 
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.

You know what, I will ask. I will explain because yes the doc says temperature regulation is huge for me. The worst they can say is "No" and I can move on. I do not want to end up in the hospital again, that was really the worst. I'm not at all worried about line jumping or anything like that. Honestly I want to have a realistic view of what I can and should ask for and what I should be planning for now that things are a bit different. Thanks for your feedback!
 
You know what, I will ask. I will explain because yes the doc says temperature regulation is huge for me. The worst they can say is "No" and I can move on. I do not want to end up in the hospital again, that was really the worst. I'm not at all worried about line jumping or anything like that. Honestly I want to have a realistic view of what I can and should ask for and what I should be planning for now that things are a bit different. Thanks for your feedback!
Just an FYI ( and I do have problem with the heat and have been taken to the ER from Disney , it is free fro them to take you and a free taxi valcher to get back buy the way) but I find it harder to stay out of the sun heat between rides then other time. I would look into touring plans website ( you can find discounts online easily) try and go at park opening and do the outside rides when it is cooler make FP for when it start to get hot. Take an afternoon bread back at the hotel ( for me this has made a world of different I turn the AC as low as I can ) and then back latter in the day. You can buy cooling cloth and vest ( I have never used the vest but have heard great things) I have used Omni freeze and I find it works great ( sunscreen burns me so I have to wear long sleeve and I burn in the shade. )

One thing I have found about the DAS is that it is a tool and it only works as good as you make it. For most it does not do everything it is not oh I have a DAS so I do not need to do anything else ( I hope this make since) so having a good touring plan, doing outside ride show first thing extra.
 
Just an FYI ( and I do have problem with the heat and have been taken to the ER from Disney , it is free fro them to take you and a free taxi valcher to get back buy the way) but I find it harder to stay out of the sun heat between rides then other time. I would look into touring plans website ( you can find discounts online easily) try and go at park opening and do the outside rides when it is cooler make FP for when it start to get hot. Take an afternoon bread back at the hotel ( for me this has made a world of different I turn the AC as low as I can ) and then back latter in the day. You can buy cooling cloth and vest ( I have never used the vest but have heard great things) I have used Omni freeze and I find it works great ( sunscreen burns me so I have to wear long sleeve and I burn in the shade. )

One thing I have found about the DAS is that it is a tool and it only works as good as you make it. For most it does not do everything it is not oh I have a DAS so I do not need to do anything else ( I hope this make since) so having a good touring plan, doing outside ride show first thing extra.

Yes I will say we do all of that anyway, my son likes the pool and I found out a couple years ago that I just cannot tolerate the go go go all day like some people can anyway. I do use Touring Plans, mainly as a checklist and for the Lines app. Which reminds me, I need to go in and start building those out but I fear that my travel companions this time might think it's a bit overkill. Since I know the parks pretty well at this point I have a set routine in how we approach touring. My main concern are those X-factors that can get in the way.
 
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.

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.*
 

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