Multiple Sclerosis

[heylucy1971]

Hi everyone. This is my first time posting around here but my mom speaks highly of the folks here. My question is this coming Dec will be my first trip to WDW since being told that I have MS. I have a few questions about things so please bare with me if I seem to jump around with this cause 1. I'm nervous with this being my first post so I don't want to get into trouble and 2. the MS does that to me sometimes. I will mean and think one thing but then I get sidetracked and off onto something else.

So here goes nothing....

My first question is about getting around the parks. I have trouble at times..especially when it's hot. Should I try to do the parks with just my cane or rent a ECV to get around? To look at me I don't look like I need the ECV but trust me, after a couple of hours I know I'm going to be miserable and don't want the rest of my family to miss out because of me.

Another questoin that has concern with me is fitting in the room with the 4 of us and the ECV....do they have places to store them or are we gonna have to trip over them all the time?? I'm gonna rent one from offsite if I get one. The other thing is should I try to request a handicap accesible room?

If you read this whole thing THANK YOU. These things really condern me and it seems all i'm doing is worrying about this till i'm sick!!

Thanks again,
Jeanie

 

[IamCanadian]

Jeanie

Welcome to the DIS boards, I am relatively new here myself. If you have more quetions; ask away; very knowlegable and helpful group here.

I would strongly recommed to rent an ECV from an offsite supplier. No sense in ruining your vaction if you can not enjoy yourself. Miany people that have invisable handicaps also use ECV's.

What resort are you planning on staying? A handicap room might not be necessary. You might have to re arrange the furniture in the room to fit the ECV in the room. The ECV will need to be near a power outlet to charge it overnight.

 

[jefmil42]

Hi , I just got back from 5 days at Walt Disney World. I have M.S and when visiting a few years ago i remember how hard it was without a ECV. I strongly recommend you rent one from either there or off site as mentioned above. I have my own so dont know too much about the costs. I will never go again in July or August, it is just too hot and not enough areas to get out of the heat.

The room was big enough for me to have 4 people and also keep my ECV IN it too charge. Bring your cane though so you can transfer from your ECV to another regular wheel chair they give you on the rides. Beware of the very rude people there, there were lots. Hope you have a good time. I do however recommend a handicapped accessible room if available, just because i was put on a 3rd floor which made it a little more difficult for me. The hotels do have elevators though.

 

[Nanajo1]

Welcome!
I have had several trips to WDW since my Dx of MS. I am able to walk very short distances. I use a power chair at home for distances. I rent an ECV from an off-site vendor for WDW. I think it is important to recognize that you can't wait until you are feeling symptoms to react. You must be proactive. To me that means conserving energy and keeping cool. So use the ECV before you are tired and keep hydrated and in the shade as much as possible.
I have never had a problem with my ECV not lasting all day and into the night. I charge it every night. If your room seems cramped then check with bell sevices/front desk and see if you can keep it there overnight. But most rooms will be fine. I don't request H/P rooms they don't work for me because I don't use my ECV/wc in the room.
There is a legion of well informed, helpful folks here on the disABILITY board I am sure others will be along with more info.
Have a great trip.

 

[Cheshire Figment]

Hi Jeanie

Welcome to disABILITIES.

As others have said you should rent an ECV from off-site. Make sure that when you rent one you tell the people you have a cane, so they will be sure to have a "cane clip" on the back of the seat.

Here are the urls and phone numbers of the off-site rental companies:

Walker Mobility:
1-888-726-6837
www.walkermobility.com

Care Medical:
http://www.caremedicalequipment.com/

RANDY'S Mobility is in Kissimmee 407-892-4777
http://randysmobility.com/

Colonial Medical
http://www.colonialmed.com/about_cms.html

I have used Walker a few times. They will ask for a credit card and charge it the day before arrival. They will deliver the ECV to your hotel bell services before your arrival and pick it up there after your departure. Their rates, especially for longer than a week, are much better than Disney's. Also, their scooters are much better. Randy's is less expensive, but they require you to be present at both pick-up and drop-off.

You don't say if you are renting a car or what. If you are using a car for getting around, the ECVs break down into five pieces, the heaviest about 39 pounds. They take about a minute or so to take apart and about two minutes (once you are used to it) to put it together.

More than likely you will NOT need an accessible room. Almost all the accessible rooms have king-size beds and roll-in showers. Note that Housekeeping can provide a shower seat for the tub if you need it.

One consideration is room size. The value resort rooms are 260 sq ft with two double beds. The moderates are 314 sq ft with two double beds, except the Caribbean rooms are 340 sq ft. AKL and WL rooms are not much larger. The largest rooms are in the Contemporary and Polynesian. In any of the rooms there is normally an area where you can park the ECV and recharge it without much of a traffic problem

 

[SpaceMounatin]

My mom has MS too. We stayed at the All Star Sports resort. We told them when we booked the room that we were coming with a scooter (ECV) and they gave us a "handicapped room" which is on the ground floor and right near the food and pool. My mom also called a week before to make sure that she was booked into the handicapped room, which she was.
You should use a scooter so you don't get fatigued. Disney is a lot of walking.
My mother says to defintely NOT rent your ECV from Disney, but to use an outside company. Disney is expensive and they run out of them fast. The place she rented from, Care Medical Equiptment, charged $30/day (cheaper than that if you rent by the week)and delivered the scooter to the hotel the morning we came (it was there when we got there) and they picked it up when we left. The other good thing about renting from an outside place is that you have it the whole time, not just when you're in the park. All the buses in Disney are scooter-accessible and it only takes a few minutes for the bus driver to get you on.
Good luck, have fun and welcome to the Disboards!

 

[heylucy1971]

Thank you all for replying to this. I feel alittle bit more comfortable. I am for sure going to rent the ECV from offsite. Made contact with two of the company's about prices.

We will be staying at BCV when we go and I really don't need the handicapped room..i'm able to get around although my kids at times call me "Mommy Weeble Wobber" cause at times I get disorientated. My only concern left I guess is will the ECV fit through the doorway of the room.

Something else that just occured to me is that I take shots every other night. We will be flying down there so should I just pack my meds with me or ship them ahead? See, I'm sooooo confused at times and all this just makes me so nerves and stressed.

Thanks agian, you all have been great!!

 

[Andrew Bichard]

Heylucy1972,

Your ECV will fit through your room door OK.

I have no idea what medication you need to take, but I do take medication for my own condition.

I always worry about it getting lost!

I usually take double what I need, split between my carry on luggage and my wife's so that if one set is lost, stolen or otherwise misplaced I can still get by. I also carry copies of my prescriptions with me, so I can get more if the worst comes to the worst.

If youare flying, don't put medication in your checked luggage. My wife did that one year and had her suitcase broken into and all her medication stolen. I assume the theif had no idea what the pills were, but assumed they might be fun. If your local pusher offers you arthritis pills, you know where they came from!

Andrew

 

[Cheshire Figment]

Andrew is very right on both counts.

All the Disney resorts doors are wide enough to handle an ECV, even the heavy duty ones. Normally there is enough space to park it with no problem. I will find a convenient place to plug in the charger near where I will park the ECV; then just plug the cord from the charger into the ECV. (Note it is very important that the power switch on the control box of the ECV be off or the battery will not charge.)

Do not, under any circumstances, pack any medicines or medical items in your checked luggage. I have never had a problem with security and I carry insulin syringes and testing lancets, as well as various pills and liquids. If you have any medical equipment, such as a nebulizer, this must be allowed by the airline as carry-on luggage above your normal limits without penalty.

A minor point when travelling; I will discreetly show my handicap hang tag to one of the airline staff at th boarding gate and be allowed to board early instad of standing in line.

Mike

 

[SueM in MN]

I just wanted to welcome you to disABILITIES.
you already got a lot of good info, so I will only add a little.
1) The weather in December should not be real hot, so that will help. You might want to still watch the weather reports though in case they get a hot spell. Good parks to go when it's hot are Epcot and MGM (mostly because the shows are longer). MK is harder to go on a hot day because many of the show/rides are very short - like 2 minutes, so save that for a good day when you feel like you can transfer in and out of ride cars pretty well. AK gets hot because almost everything is outside, so save that for a coller day.
I agree with the other posters about keeping your meds with you in your carry on bag. You never want to check them. If you need a refrigerator for any meds, the resort may (also may not) give you a refrigerator free of charge. Make sure the bottles are labeled to indicate they need refrigeration.

 

[Earstou]

For our trip last May, when making reservations, I mentioned we would have a wheelchair in the room, but wouldn't need a handicap accessible room. I also asked that the room be nearer the elevator rather then at the end of the hall.
As the time for the trip got nearer, I also sent a letter with the same information.
We stayed at the BC and the room we were given was quite roomy, with more than enough space for us and the chair!

 

[Figaro]

Everyone has given such wonderful information and I don't have a whole lot to add. I use medications that have to be injected and I always take them and a sharps container (pharmacy should be able to order one) with me in my carry-on.

I have some medications that are very temperature sensitive and I always tell the front desk that I am fine with them keeping them in a fridge there instead of giving me a fridge for medical reasons but that if I am having an attack I will need one of the medications immediately and that the other one is a fairly potent injectible narcotic that is at risk of being stolen because the street value is so high. They've always managed to find me a small fridge for the room after hearing that(smile).

Although the only thing that saved me one time after housekeeping unplugged the fridge to plug in the vacuum cleaner and then forgot to plug it back in, was that I had a LOT of bottled water in there and it kept the temperature low enough that I didn't lose an entire bottle of medication. I now make sure that I pack the room fridge with bottled water so that if it happens again I will have some lag time. My spouse (who is more practical than I am)(smile), just ducts the fridge plug into the outlet.

Oh, and a wonderful book for people with hidden disabilities is: "Living Well with a Hidden Disability" by Taylor and Epstein.

Hope you have a great trip!

 

[Nanajo1]

Just an FYI. Mousekeeping will suppy a sharps container on request.

 

[Figaro]

nanajo1, the last two times I've flown they've told me that I needed to have a sharps container in my carry-on for used needles, so I finally got around to picking one up. Of course when we drive instead of fly to WDW, I just wrap the used needles in duct tape so no one can get stuck by accident and throw them away.

 

[Momtoapug]

Welcome!
I have had several trips to WDW since my Dx of MS. I am able to walk very short distances. I use a power chair at home for distances. I rent an ECV from an off-site vendor for WDW. I think it is important to recognize that you can't wait until you are feeling symptoms to react. You must be proactive. To me that means conserving energy and keeping cool. So use the ECV before you are tired and keep hydrated and in the shade as much as possible.
I have never had a problem with my ECV not lasting all day and into the night. I charge it every night. If your room seems cramped then check with bell sevices/front desk and see if you can keep it there overnight. But most rooms will be fine. I don't request H/P rooms they don't work for me because I don't use my ECV/wc in the room.
There is a legion of well informed, helpful folks here on the disABILITY board I am sure others will be along with more info.
Have a great trip.

Great reply! Proactive is key. On that note, would you recommend any one resort onsite as easier or better than others in your experience? Especially considering distance to bus lobby etc? Thanks for a fellow MS-er

 

[gap2368]

Great reply! Proactive is key. On that note, would you recommend any one resort onsite as easier or better than others in your experience? Especially considering distance to bus lobby etc? Thanks for a fellow MS-er

You might want to start a new thread as this one was started in 2003 and a lot of these people are not here any more ( the OP has 2 post so I do not think she will replay at all)

 

[SueM in MN]

I’m going to close this thread since it’s almost 15 years old! Time flies.