MS disability

momz

DIS Veteran
Joined
Nov 1, 2005
I have been to WDW many times with DH and kids. But it's been about four years since our last trip. Now, DD will be a senior in high school next year and she has asked for one last "childhood" WDW trip.

I love the idea. However, I unfortunately, was diagnosed with multiple sclerosis in May '17. I feel like I am still learning about how this disease has changed what my body can do. But, I have come a long way!

I'm scared about planning a trip. I'm wondering if I can physically do this.

I have balance problems. I have sensory loss and can't feel my feet. Some days I'm ok and my disability is not noticeable to others. Other days, I use a cane.

I'm worried more about standing, than walking. i sway when I stand. It's like I don't have a sense of where my body is in space.

I want to go. But I'm scared. I worry about falling. I also worry about making it through the days. Fatigue and heat make symptoms worse.
 
We are considering late December/early January. So I have time to figure this out.
 
Keep your head up. My oldest sister has MS and she is struggling with walking. It is a nasty disease! I think if you take it slow and do what you can. Rent a scooter for the parks so you can stay sitting and not worry about falling. Good luck to you and I hope you go and not let this disease win!
 
MS is a disease with many facets. I took a young friend to WDW who had just been diagnosed with MS in 2004. She had no issues at all. Her mother had more mobility issues - like walking up the stairs at OKW.

I am of the belief that one uses whatever tools that one needs no matter the diagnosis. I do not have MS but I have major issues. I am like a 3 legged stool with one leg missing. Use whatever tool that you need. It may be a cane, it may be a rollator or it may be an ECV or wheelchair.

You absolutely can do this trip. But you may need some tools to help you.
 
I have been to WDW many times with DH and kids. But it's been about four years since our last trip. Now, DD will be a senior in high school next year and she has asked for one last "childhood" WDW trip.

I love the idea. However, I unfortunately, was diagnosed with multiple sclerosis in May '17. I feel like I am still learning about how this disease has changed what my body can do. But, I have come a long way!

I'm scared about planning a trip. I'm wondering if I can physically do this.

I have balance problems. I have sensory loss and can't feel my feet. Some days I'm ok and my disability is not noticeable to others. Other days, I use a cane.

I'm worried more about standing, than walking. i sway when I stand. It's like I don't have a sense of where my body is in space.

I want to go. But I'm scared. I worry about falling. I also worry about making it through the days. Fatigue and heat make symptoms worse.

January is a *great* time - in fact, I think it is the best time - to go if you have issues with the heat (like I do). I'm also allergic to the sun (I know, I'm crazy to even go outside in Florida, let alone run around all over WDW LOL) so I tend to plan either late fall or late winter/early spring trips, and try to avoid holidays.

If I am reading your post correctly, you are concerned primarily about the following:

Balance problems, standing, numb feet, falling, fatigue and heat. (Heat we just discussed - I really think you have found the best time of year to go - in fact dress in layers, because it can get cool at night!)

I think you should consider a mobility device of some sort. I'm not a medical professional, but I am a WDW regular with my own set of mobility issues (some of which are very similar to yours, just for different reasons)

Your three primary options are: Wheelchair, Rollator (which is a walker that has a built-in seat) or ECV (scooter).

Which option you choose depends on a lot of things. Where are you going to stay? On property, or off? Will you be park hopping? What is your touring style going to be? (probably not "commando"-go-all-day-nonstop now if you are like me)

Is there someone to push you in a wheelchair? Do you think you could push the Rollator for the (average) 3 to 10 miles per day that the average Disney Guest walks? Or do you have issues that would preclude using an ECV, like vision issues or dizziness, etc.?

There are pros and cons to using any kind of assistive device - which one you decide is best for you is very personal. Regardless of what you decide to do, just remember that like our @arminnie said above, use the tools you need to have the best possible time with your DD. Just as using glasses if you can't see, or a calculator to do math, or hearing aids if you are deaf are all tools that we use to accomplish a task, using a mobility or assistive device at WDW is simply using a tool to make moving around WDW easier.

Many people who use a device at WDW don't use one in their "regular" life at home. For many years, the only place I used a scooter was WDW until my condition progressed, and I now use one daily. And don't worry about what anyone will think - first of all, you, on a scooter (or in a wheelchair, or with a Rollator) is a total non-event at WDW. There are so many other folks using devices of all sorts that no one will bat an eye. The chances of bumping into someone you know (outside of your traveling party) are slim, and none - and Slim just left town. And if you present it to your DD, and your family that "This is what I'm going to do so that we can have more fun, and less time watching me struggle to walk/stand/deal" - in other words, if you set the expectation that this is no big deal, your family will most likely take their cue from you. If you aren't upset or emotional about it, they won't be either. (speaking from actual personal experience)

Whatever you decide to do, we will all be here to help you find any answers you may have. I don't have MS, but I do know what it's like to look down the barrel of a Disney trip, knowing that I won't be able to give my DD the trip I want to - unless I use a device.
 
Adding that most, but not all, rollators have a seat. Many 3-wheelers do not.

You can order one through Amazon or another company (when CVS has 30% coupons, it can be quite a bit cheaper). You can talk to your medical provider and ask if one would be helpful- they can write a prescription that will help you in submitting a claim on your health insurance.

Rollators collapse easily and fit into the trunk and/or back seat of most cars- they weigh between 12 and 20 pounds (usually).

The airlines are required to transport mobility equipment at no charge.
 
If your family is able and willing to make some vacation style changes now that you have to adjust a bit for your MS, I say go for it! and listen to mamabunny, she is wise and has great advice haha. Whatever mobility device you think you'll need, plan to take it and at least make backup plans to get the next level suddenly on vacation (my dad has major mobility issues and went two trips on just a cane, definitely NOT safe or smart, he should have rented a Ecv. He also had balance issues and used a cane in daily life, it was NOT safe after several Disney days. He pointed out there are a deceptive number of hills in Disney we take for granted with normal balance. He doesn't have MS, but a rare muscle disease that looked fairly similar when he was in the early stages).

From what you're describing, I'd say just go for the wheelchair/ecv, an ecv gives you the most independence to enjoy a trip and keep up with your family while also taking care of your needs. You can always park it in a land and use your cane for lines etc if you don't want to take it through, but you'll have the option that way.

As far as time of year, January is supposed to be great crowds, I've done February and it was also lovely compared to summer craziness (not Presidents' Day weekend though). Pick a time that works, and if it's cooler and low crowds, great! My dad uses a power chair full time now and found the lower crowds easier, but even if busy it's not impossible to go, just a tad slower. Use your midday breaks, FP, and a lot of people find first aid useful for a break as well, especially if you have to stay offsite and can't really leave the park. While your issues sound primarily to be stamina/mobility related, remember that DAS is potentially available if you have other needs that preclude regular waits in line not solved with the mobility aid.

One other piece of advice, that I learned the hard way, is talk to your family/kids about what your limits may realistically be at Disney for the trip, regardless of which assistive device you choose. I know my first trip with my parents after dad was in his power chair, I didn't realize that he still had limits and stamina issues, just of a different sort. For the entire trip and the beginning of our second one, he was pushing so hard he started to not enjoy as much. Once he told me what was going on we all got to a new normal for trips (i.e. I won't miss a rope drop but he may come later with mom, or he takes longer midday breaks, he stays in a shop while I go on some thrill ride, etc). Just so everyone is on the same page and you all have as much fun as possible, that way your kids know what you are up for and you don't push too hard trying to make a perfect trip and endanger your wellbeing. (Also if you choose an ecv, warn your family to watch their ankles, I've darted in front of my dad more than once and these things pack some power and don't stop as quickly haha). Even though we have a little different feel to our trips now, I wouldn't trade them for anything. Just being together and enjoying the Disney magic is so incredible, the rest of it is a non-factor to us. (And people really don't notice the wheelchair it seems, and Disney is SO great with mobility issues. It's so lovely compared to home).
 


Keep your head up. My oldest sister has MS and she is struggling with walking. It is a nasty disease! I think if you take it slow and do what you can. Rent a scooter for the parks so you can stay sitting and not worry about falling. Good luck to you and I hope you go and not let this disease win![/QUOt

This encouragement is appreciated. MS will not defeat me. I will continue to enjoy every day I am given.
 
I have been to WDW many times with DH and kids. But it's been about four years since our last trip. Now, DD will be a senior in high school next year and she has asked for one last "childhood" WDW trip.

I love the idea. However, I unfortunately, was diagnosed with multiple sclerosis in May '17. I feel like I am still learning about how this disease has changed what my body can do. But, I have come a long way!

I'm scared about planning a trip. I'm wondering if I can physically do this.

I have balance problems. I have sensory loss and can't feel my feet. Some days I'm ok and my disability is not noticeable to others. Other days, I use a cane.

I'm worried more about standing, than walking. i sway when I stand. It's like I don't have a sense of where my body is in space.

I want to go. But I'm scared. I worry about falling. I also worry about making it through the days. Fatigue and heat make symptoms worse.
I have also used an ECV for a different reason at WDW but do not use at home. I would try one at a store near your home to get an ideas of how they drive and what you have to do to drive. last trip I was able to just use a cane big step for me. I found the cane helped me at the rides more than ECV ever had even when one helped me get around the parks. use what ever helps you the most during a trip even if it is using more than one helper. other than your family who are you going to see at the park that you are going to see again? so don't worry about them. be scared but don't let that stop you and your family. have a great trip and make lots of memories
 
As an entitled guy whos legs work just fine, let me give you some advice*

Plan bigger than you'll ever need. It does no harm (apart from the rental fee) to park an ecv or wheelie somewhere shady and walk most of the day if you've got it in you. But if a bad day sneaks up on you and all you have is a cane your vacation becomes an emotional minefield where everyone else is telling you it's fine (and meaning it) and you're still feeling like a wet blanket.

Try out a few options now and see what you like. I have two leg-ceptional friends and one prefers ecv over powerchair and the other is exactly opposite.

In the same theme, plan a 2+ hour break. You don't have to actually take it. But if it's there and you don't need it, fine. But if 3pm comes in you and you're exhausted but your next fast pass is about to expire, you'll feel like pushing through. That's how you end up feeling rekt for the rest of the night.

* - I'm not entirely without bona fides, I am an accomplished tinker who's crafted a few successful prosthetic limbs, a slew of home accessibility upgrades, and a few useful mobility device improvements (along with plenty that nobody seems to care much for). We got APs this year because I've spent so much time walking beside my mates mobility gear in the parks.
 
Hello Momz - I have had MS for 4 years. I very rarely tell anyone and when someone finds out the best compliment is "I never would have guessed". At Disney it is when 1 of my 6 kids say - "Hang on I need a break" It is a combination of meds, working out / therapy, and strength of the mind (which I definitely see you have). All the same things we deal with - why we do not go in the summer, and I agree with cobright on planning bigger than you'll ever need. You already know it won't defeat you, and I bet it you are right. Get you a DAS too. :)
 
Hello Momz - I have had MS for 4 years. I very rarely tell anyone and when someone finds out the best compliment is "I never would have guessed". At Disney it is when 1 of my 6 kids say - "Hang on I need a break" It is a combination of meds, working out / therapy, and strength of the mind (which I definitely see you have). All the same things we deal with - why we do not go in the summer, and I agree with cobright on planning bigger than you'll ever need. You already know it won't defeat you, and I bet it you are right. Get you a DAS too. :)

I was thrilled to walk the MS walk last Saturday! I did well. It was slow going, but that's not what matters.

Would I qualify for a DAS? Balance is a problem, can't feel my feet, and I have optic neuritis in one eye. It never fully resolved, so I have limited vision. I'm not sure what it takes to qualify. I can't climb stairs on the best days.
 
I was thrilled to walk the MS walk last Saturday! I did well. It was slow going, but that's not what matters.

Would I qualify for a DAS? Balance is a problem, can't feel my feet, and I have optic neuritis in one eye. It never fully resolved, so I have limited vision. I'm not sure what it takes to qualify. I can't climb stairs on the best days.
not sure about DAS but if you are using a cane, wheelchair or ECV CMs will have you use a way around the steps. I was using my cane last trip when we were in line for Splash Mountain and the CM showed me how to use wheelchair ramp around the steps. also at Toy Story I was sent to the new third track which does not have steps. first time I did not have to wait for handicapped cars which usually made the wait a lot longer. this was without a DAS at both rides
 
I was thrilled to walk the MS walk last Saturday! I did well. It was slow going, but that's not what matters.

Would I qualify for a DAS? Balance is a problem, can't feel my feet, and I have optic neuritis in one eye. It never fully resolved, so I have limited vision. I'm not sure what it takes to qualify. I can't climb stairs on the best days.
The DAS is need based not DX so in order to get the DAS you will have to let the CM know why you need to wait out side the line
 
Would I qualify for a DAS?

Nobody here can definitively answer that. Much of what you’ve mentioned would be considered mobility/stamina which is recommended to use a mobility device. As PP says, to request DAS you will have to focus on your “needs” as directly pertaining to waiting in a queue environment, rather than your diagnosis. And I’d leave out anything that might be considered as mobility or stamina (balance, sensory issues with your feet, swaying, fatigue, etc.).

The first post of this thread explains DAS: https://www.disboards.com/threads/w...15-digital-das-on-tickets-magicbands.3178976/

Enjoy your vacation!
 
I have MS. there it is. I never used to say it. Now I guess it's part of who I am despite wishing it wasn't. We go every year to Disney. Here's what I will tell you. Plan for a trip for as long as you can financially afford. This will allow you to accomplish all you want in a more relaxed time frame. You said the end of Dec/Jan. Don't got the week of xmas new years it will be crazy and lines long. After the holidays in January is quieter and cooler. My son has a winter bday so we've gone in Jan/Feb. Sometimes the weather actually gets cold. I do not use a wheelchair or dvc. Psychologically I'm not there and it's easy for others to say just use it but it's not them it's you and you know if you're ready for that. I too have balance issues. It's like walls just jump out in front of me( I don't know how they do it haha). Plan to divide parks in half, Don't cross the parks be methodical in planning your day.An example would be in MK tommorowland and Fantasyland then play it by ear. Call it a day or do one more thing. Definitely stop for lunch and dinner inside. We do this not because we're starving but because you are out of the sun, are sitting, and if applicable in a/c. We go in warm weather also. I am very heat sensitive. This year I had my second episode of optic neuritis and now have a blind spot in my eye and it effects my depth perception. If you have depth perception issues with stairs make sure you know what rides have stairs so you can figure out how you will manage that line. An example would be splash mountain. I do not have a cooling vest so I keep disposable one use ice packs in our backpack in case I get overcome quickly. Theyre just a few bucks and can be bought in the pharmacy dept at Walmart. Used them once in Feb. so it was worth having. I also have one of those easily found cooling rags that always stay cool with a little water. Use it get it. They work I will put them on my legs and chest if we are sitting waiting for something. QS has free water but we always bring a few bottles because when I go down I go down quick and finding and waiting for water isn't always an option. My right leg swells terribly so make sure to bring something other than a sneaker incase you have some sort of inflammation (I bring a nike flipflop). Take advantage of the pool if you get inflammation. Of course nothing over 82 degrees is good for us but they used to keep them all at 80 years ago I don't know if that is currently. I get very fatigued and my best time is morning. Take advantage of your best time of day even if it's not your families they will understand after all they'd rather be at Disney than home. Even though evening is not a great time for me I do find I feel better and can keep going once the sun is down. By no means is that a daily occurrence but once or twice andit's after having a nice sit down meal so I'm rejuvenated minimally.Hope these tips help. You may or may not be able to use a DAS depending on if it's more than mobility. Oh an request a ground floor room. It's just a request but depending on your hotel the elevator banks can be a walk from where your room actually is. We usually do a royal guest room pool view so we have easy access and being in a mod allows for us to add days on verses staying deluxe. I find value resorts a good for a night or two but as the trip wears on I loose patience and need more quiet and I find there are more kids and noise at a value personally. We leave in 144 hours yes hours and our first night is a family suite at AOA then 13 nights at POR. Good luck
 

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