Just diagnosed with MS

[pigletforever]

I just found out that it is probable that I have MS. More test have to be done. 90% sure what we thought was Fibro is MS.We are going to WDW in DEcember/january. I am able to walk fine but I get tired very easily. But my doc has been lecturing me on overdoing it. I tend to push myself - something I have done all my life. We are going to be there for 12 days. I am trying to decide if I should just rent a ECV before we get there and have it waiting for me. My biggest concern about renting one off site is where to store it while we are in teh hotel room. We have a 2 bedroom Villa at BLT. Would there be enough room to leave it in the hotel when we don't need it? Or would I be better to just wait and see how I do and rent from WDW if I need it. I know if I rent for WDE there is chance there won't be one availabe when need it.DH thinks I should just make arrangedments to have it waiting when we get there. Can anyone give me input? I am really new to this DX and have very little knowledge.


Thank in advance

 

[snorris49]

I can't really help with the ECV, except to say that I've seen people park them in the hallway at the hotels. Not sure if that is something that is prohibited or allowed.

I did want to say you came to the right place for advice!
Good luck on your trip!

 

[Piper]

Don't worry about having enough room for the ECV. They really take up very little space. My apartment is very small and mine fits just fine. It will be much better to have it and not need it than need it and not have it!!

 

[SueM in MN]

Although I have also seen some ECVs stored in the hallways, I would not recommend it for 3 reasons.
1) if it the hallway, there is a chance someone will play around with it. The renter is responsible for safety of it, so I would not want it left in a hallway for long periods of time.

2) it needs to be reasonably close to an outlet for charging. There are some outlets in hallways that Housekeeping CMs use so they can plug in equipment like vacuums and carpet cleaners, but the nearest outlet may not be near your room.

3) I'm pretty sure that parking one in an inside hallway would be against fire rules ( hallways have to be kept clear in case of fire. .

I have not stayed at BLT, but we have stayed at Contemporary and have toured the BLT units. I can tell you that you will have no trouble finding a place in your villa to store it. You can always move furniture around a little bit or even ask Housekeeping to remove a piece for you.
I also suggest people take along an extension cord or power strip in an extension cord. That way, you can 'move' an outlet to a convenient place and don't have to bend down to plug the ECV in for charging.

If you rent an ECV at the parks, as you mentioned, there is a chance yhey may be out and uou eould hace to settle for a wheelchair. Unless you rent from off site, you will also not have one for getting to and from the parks and for getting around at the resort.
There is a nice walking path from the Contemporary to MK, but what might be a nice 10 minute stroll in the morning might be a 'too far ordeal' when you are coming back later in the day.

Taking the monorail involves walking from the BLT building over to the main Contemporary building. Once at MK, you need to walk down a steep ramp to get from the monorail station to the ground. Coming back without an ECV, you would need to walk up an equally steep ramp to get back up to the MK station.
There are no elevators at the MK or TTC stations.

 

[firsttimer2007]

I do not use a scooter but since Diney will store luggage, fridges, ect wouldn't they also store the scooter for you? Then you could just get it out of their storage when you needed it but it would not be in your way all the time. Disney does a great job assisting people with abilities that are different than others.
I would call and ask them if they have an suggestions for storage.

 

[Capt. Barbosa]

When my DW was first diagnosed with MS she tried to tough it out without the ECV and she was miserable after that we rented from off site and our trips have been so much more enjoyable. We have had the ECV in room with us at POR/AK/WL and never had an issue with space. Renting offsite the ECV's are much more mangable then the Cowpushers they rent onsite.

 

[SueM in MN]

I do not use a scooter but since Diney will store luggage, fridges, ect wouldn't they also store the scooter for you? Then you could just get it out of their storage when you needed it but it would not be in your way all the time. Disney does a great job assisting people with abilities that are different than others.
I would call and ask them if they have an suggestions for storage.

That is a good suggestion.

They will and some people have has Bell Services store ECVs, but then that requires a trip to and from where ever it is stored whenever it is needed.
That does make sense in a small room. The reason I didn't suggest it in this case is that I know the room in question us large and there will be no trouble finding a spot to put it.

If someone wants to store it, they should ask at check in. Calling ahead of time gets you a call service that answers as if they were at the resort, not actually staff at the resort.

 

[blurrycat]

I almost never post here, though my wife does, and I had to say something to this post. I've been there- recently. The difference is I was diagnosed with lupus before I finally found an excellent neurologist who found it was, in fact, MS.

This is a long road you're embarking on but I really wanted to tell you not to beat yourself up over any feelings you may experience. They will seem as though they come out of nowhere. No matter what anyone else says it's ok to be however you need to be while you deal with it. I hope that makes sense.


Please feel free to pm for any reason whatsoever.

That being said, I have progressive MS and have no choice but to use a wheelchair on my trip. But I had the same questions as you before the decision was taken from my hands. I say, absolutely rent an ecv. The exhaustion hits suddenly, so does the pain. It's better to conserve for what's really important. Pushing yourself is all too easy to do but remember one day of that can possibly put you in bed for the rest of your trip. I'm sure your family would prefer you with them!

 

[Schmeck]

Rent the ECV and do not leave it behind in the room, ever! WDW is a lot of walking, in the heat and sun (even in the winter!), and you want to conserve your energy so that you have a wonderful trip, and not end up in your room, or the ER, when you are supposed to be having a great time with family and/or friends.

You can leave the ECV in a central location in the parks (like in the stroller areas) and go to a few attractions, but just getting to/from the WDW transportation can be a long hike, especially after being in the parks. ANd of course there is that longest walk of all - back to your room at night after a long, fun day!

Your family will be very greatful if you use the ECV as much as you can, because they get to spend more time with you in the parks, having fun together!

 

[SPENCER AA]

I HAVE HAD MS SENSE 1992 AND MY WALKING ABILLITY HAS BEEN PRETTY GOOD. MY WIFE AND I USE SCOOTORS AND RENT THEM FROM VACATION SCOOTORS IN ORLANDO. WE FIND THAT YOU CAN ENJOY THE DISNEY PARKS AND EVERYTHING IS GEARED UP TO HANDLE THESE ECVs. WE ALSO FIND THAT ITS SO MUCH EASYER KEEPING UP WITH THE FAMILY IN THE PARKS. WE FLY IN TO ORLANDO FROM LOUISIANA AND I USUALLY HAVE VACATION SCOOTORS DELIVERED TO WHERE WE ARE STAYING THE MORNING AFTER. THEY WILL DELIVER A SCOOTOR JUST ABOUT ANY WHERE IN THE ORLANDO AREA. WE GET THE DIPLOMAT SCOOTORS AND THEY COST ABOUT $35.00 PER DAY,PER SCOOTOR. THESE SCOOTORS RATE ABOUT 320 LBS, ALSO THERES SEVERAL TYPES OF SCOOTORS TO RENT AT DIFFERENT PRICES. WE RENT A MEDIUM SIZE VAN, IM ABLE TO BREAKDOWN BOTH SCOOTORS AND FIT THEM INTO THE BACK OF VAN AND THEN 7 OF US FIT INTO THE FRONT OF VAN. I DONOT BELIEVE YOU WILL HAVE ANY PROBLEMS STORING YOUR ECV AT NIGHT WHERE EVER YOU MIGHT STAY. GOOD LUCK, SPENCER

 

[nanadeb]

With a diagnoses like MS, you might want to look for a long term solution instead of one for just the Disney World trip. It took me over a year (I have a different disease) to accept my doctor's advice not to overdo it. I tried Disney once without one and was miserable. After a Disney trip in which my DH and DD took turns pushing me around in a wheelchair, I broke down and bought a used ECV. It has been one of the best decisions I have ever made (Hooray for Craigslist!)
I bought a scooter that breaks down easily and fits in the trunk of the car. In April, I flew Airtran with the scooter and had no trouble at all. By the end of the next trip, it will have paid for itself in rental fees alone. I only rely on the scooter for outings that I expect will involve lots of walking without rest stops. My cane and I are still the best of friends.
I know that someday I will wind up in a wheelchair, but for the time being, I am doing the best I can to preserve my mobility. If you think of it that way, an ECV is kind of like damage control. It's just a tool, not a label. It doesn't make you handicapped. It makes you able.
Off the soap box for now.