Disney with MS

[asoko]

I was recently diagnosed with MS and have decided I am going to rent something for our september trip. There is no way I can do that much walking. DH says wheelchair would be fine, he could push. I also thought the wheelchair could be folded and stored when traveling on the bus like a stroller. I don't weigh a lot, but I'm worried he would get tired of pushing me and we have 2 kids (8 and 6). I thought maybe of renting an ECV but I've never driven one and am worried about the bus situation and crowds.

I can get out of whatever I rent but I can't be in the heat for too long, walk around too much, stand in lines or go down stairs.

Do I go through lines in whatever I rent? Do I leave it outside? Do I get a GAC card? I just don't know what to do and am looking for some advise how to navigate the world and be as little a nuisance as possible to my family and other guests.

I would really appreciate any advice--thanks

 

[Cheshire Figment]

Hi and to disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. You may find Post #2, which deals with mobility and stamina, and Post #6, which deals with the Guest Assistance Card most useful to you to start.

Or, if you want an easier route to the FAQs, click on the link in my signature.

 

[starshine514]

My husband also has MS. He uses an ECV at the parks. I think that would be a better option than a wheelchair for you. Even though your DH might not mind pushing you, I think you all would have a better time if you were able to be more independent (especially with your children, as your DH may need to be helping with them, rather than concentrating your wheelchair).

Go to your local grocery store or Walmart and try out an ECV. I've ridden on DH's scooter (moving it around the house and such) and it's pretty easy to operate. I'm sure you'll be able to get the hang of it rather quickly.

I suggest renting an ECV from an outside company, for multiple days it will be cheaper than renting at the park. I would also suggest staying on the ECV when you go to ride rides. The CM will tell you how/where to proceed. At times, you will need to transfer to a wheelchair (and often leave the scooter behind to actually ride). Sometimes the lines will be mainstreamed and other times you will go to a special line, or enter through the exit. A CM will generally be there to direct you. As long as you're going to stay with the ECV, you won't need a special GAC - you'll only need that if you're deciding to go through the line without the ECV and need a special accommodation.

Are you staying onsite? If you're not and you're driving in, the handicapped parking is generally pretty close (which is handy, since I don't believe the trams can handle scooters - but the monorail can). (Also, I was assuming you are going to 'the world' and not 'the land', as I geared this last paragraph towards WDW.)

 

[asoko]

starshine 154, thank you for your advise, I read the FAQs many times, while informative it doesn't address "what works best in real life".

I never thought of "practicing". I'm sure that would make me feel much more comfortable. I do want the independence and let DH concentrate on the kids and not worry about me. He already gets to do that enough.

We are staying onsite which means I have to travel via bus. That makes me nervous too. I might make DH drive it on and off.

I think I will also have him and the kids go in front so they can clear the way for me. I'm just trying to get some real world advice, I am a planner and have a million "what if" answers.

 

[KPeveler]

starshine 154, thank you for your advise, I read the FAQs many times, while informative it doesn't address "what works best in real life".

Actually the FAQs are based only on "real life." They were written by moderators here on the board, who are not paid (by Disney or anyone else) in any way. We create them out of our own real life experiences. No, there is n MS specific info, but rest assured the information is accurate and definitely "what works best in real life"

For example, the FAQs state that most lines are mainstreamed and then lists all the rides you are allowed to take your scooter or wheelchair into, and what line you will use to do so. That is in post #11.

There is a LOT of information in the FAQs, so it is easy to get lost with everything we give you.

 

[cmesq61]

I have MS. We love WDW precisely because it is a place that works with my particular limitations. I have kids, although older than yours. I could not do Disney--or anywhere--w/o the ECV, but it also makes it easier for me to keep track of my kids cause I'm not concentrating so much on staying upright w/o falling!. Also easier for them cause they don't need to worry so much--can Mom keep up, is Mom geting too hot, etc. Definately practice with an ECV before you go. Monorail no problem with the ECV. I used to be afraid of the busses having read horror stories here, but I finally tried them and the new buses are super easy to use. Just take a deep breath and take your time. Plan to rest frequently. For me that can mean anything from an afternoon nap to just driving inside an air conditioned store to simply cool down. Be careful of the sun. Hope you have an awesome time.

 

[asoko]

Thank you

I really needed to hear experiences from people who have MS and find things that help make the trip more enjoyable. Sounds like the ECV would be the best and I will practice at home.

 

[WheeledTraveler]

You might also benefit from a cooling vest. I was last in WDW in late October/early November and it was still mid-high 80s. In September it can be much warmer.

 

[Tiggerish]

Another MSer here. I agree with renting ECV from offsite (have used Walker and Apple). It makes getting around the resort and to the bus stops so much easier.

The buses were my biggest fear because if I get the least bit stressed or distracted I immediately lose all ability to tell my left from my right and that makes backing the ECV into place much more difficult. [Pesky cognitive side effect of MS.] So, I would drive the ECV onto the bus, then hop off and either the bus driver or my brother or brother-in-law would park it.

As to the heat intolerance, I have that big time. But I went in August and had no problem because I drank water continuously. We just filled the basket on the ECV up with water bottles and I stayed well hydrated. Also, I wore a hat and had a mister fan. Actually, some of the others in my family had more problem with the heat than I did.

At first I was concerned what people would think when I got off the ECV and walked onto a ride or parked it outside a restaurant and walked in. I mentioned that to my sister, who told me, "You walk like a drunk duck and drag your leg to the side of you, nobody is going to think you are faking needing that ECV". I did not realize my walking was that noticably different but then I like living in a state of denial about my limitations.

By the way, my major problems are walking, stairs, standing for any length of time, heat and making my right hand do stuff since it is asleep all the time. And I had the best vacation at WDW.

The cast members were great about telling or showing me what to do with the ECV at the rides and shows. Some times you drive all the way through the line and just get off in time to get onto the ride. Some times you drive part way and then are lead (or follow a sign) to a separate boarding area. When you get off your ECV, a cast member tells you where or how you will get it back after the ride. They have the system down to a well functioning science.

 

[Capt. Barbosa]

DW has MS. I highly recommend the ECV it will make your trip easier for you and your companions. Take things slow and take advantage of all the great Air Conditioned buildings. I would also recommend a water mister we like http://www.mistymate.com/ but you can also find ones at sporting goods stores and Wal Mart but we found the less expensive ones get you wet more than cool.

 

[Kevinisagirl]

Another MS "patient" here So far I haven't needed an ECV (knock on wood) but if I had a choice between that, or a chair, I'd do the ECV for sure -much more freedom - I hate worrying about someone else having to get me around haha. I do use a cooling collar - it helps so much.

Have an amazing time!!

 

[mickeychaos]

Hi. This is my first time posting (have been reading for awhile now). I too have MS, and this will be my second trip to WDW since my diagnosis. My first trip I used an ECV, and had no problems. Since then, my heat sensitivity has increased, so I the suggestions posted here will definitely help me. We are going in September, which I know is still hot, but it was the best time for the rest of the group.

 

[Singledad]

You might also benefit from a cooling vest.

I second this advice! In fact, you should ask your doctor about one, some insurances will cover it for MS.


I also say go with an ECV, you'll be happy you did, knowing your husband can better direct your kids with his hands free. (plus you can drive around little pot holes or what not rather than being bounced all over the place running them over because dear husband is busy watching the kids, not the 'road'. :blush As an experienced pusher, I admit I've done this too many times with my sister.)