To ECV or to not ECV, that is the question.

[Apopper74]

I have MS and for the most part I am in very good shape, I currently run 3 days a week. Just had MRIs done & neurologist is quite concerned in comparison to my last ones from 2010, although I feel fine. He is actually suggesting I cancel my trip to WDW in May, if not get an ECV. I hate ECVs, driving them and being a pedestrian trying to avoid getting run down by one. I'm from NJ so being an inpatient driver is in my blood, I have no time for shenanigans. Canceling Disney is out of the question, husband suggested it and I threatened pain like he has never experienced before.

Just looking for some insight in regards to an ECV, I don't want one but may have to fold. How do you handle the glares from people that don't see the MS but a young (37) lazy mother in good shape zipping by? I know I shouldn't care but I would give myself the same.

Thanks in advance.
Adrienne

 

[Kwaschitz]

I would rent one. You can always opt not to use it if you see that you don't need it, but if your doctor thinks that you need it - you don't want to end up in a mess from worrying about what others think that could have been prevented.

(And maybe I'm a bit passive aggressive and inclined to snark, but part of me kind of likes the idea of shirts I've seen that say "I have xxx, what's YOUR excuse?" LOL)

 

[Cheshire Figment]

Please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[WheeledTraveler]

I'm 27 and use a manual wheelchair. If you don't know that it's my personal wheelchair custom made for me (and most people can't tell the difference), I look like a healthy 20-something in a wheelchair. I also can walk enough that I will get up and walk on to some rides. (I can't walk enough to walk through queues, though.) I haven't ever noticed staring when I've been at WDW. If people do stare, then that's their problem. I'm focused on having fun myself.

I started using a wheelchair part time long before I stopped being able to walk very far safely. I have chronic pain as part of my condition and using a wheelchair allowed me to conserve energy enough that I could concentrate on having fun and not worry about being so tired or in too much pain the next day. And the fact that I can't walk as much now is not at all a reflection of my wheelchair use. In fact, by using it appropriately, I've actually been able to keep walking a little more than I probably could if I didn't have the wheelchair due to the way my condition works.

One thing to keep in mind is temperature. I have a condition that sometimes looks similar to MS and one the reasons they kept wondering if I had MS is that I'm very heat sensitive. If heat is something you react to, then you honestly might need the ECV just because you may not have the energy to walk the entire park in May in Florida. The average high temperature is in the upper 80s. People in WDW routinely walk 6-10 miles a day, as well. Most of that is getting between attractions so it's not something that you could cut out.

I don't think there's any reason you should have to cancel your trip unless something changes drastically between now and May. If you're really still unsure about the ECV, then you can always bring the number for a rental agency (it's much cheapter to rent from an outside vendor and they will deliver to your resort/hotel) and see how you feel after a day. Yes, you might have to go a little slower than you'd like, but it's a lot more fun to go slower and enjoy yourself than to be miserable and going faster. Not to mention that if you get some space, you'll be able to make up for at least some of the slow times.

 

[seashoreCM]

"I have xxx, what's YOUR excuse?"

Or how about, "I can walk -- only to first base."

If you have a wheelchair (or ECV) you can still walk a little of the time, some of the time, much of the time, etc. (although someone else in the family would have to manage the wheelchair and get glared at).

Without a wheelchair you must walk all of the time.

 

[Bete]

I look at it as a life saver. You will be able to last longer, too and no one will have to worry about you as much. Get over the personal feelings about it. If this is pychological it may be rougher for you; I'm sorry. You may not want to submit to the condition and this is your way of fighting back on it by refusing to use one. I think many of us experience this part of it. If a scooter will help you need to do it. I wouldn't go against the doctors orders.

We find 99 percent of the Disney folks to be quite kind about it all and the rest don't bother us. You do what works and that's it. We have never had rude looks or remarks. I would rather be with a scooter then to not go at all.

As others have stated you can use the scooter for part of the time if you're okay that way. Just park the scooter away from traffic and enjoy some time without it.

Change your touring plans to include rest periods. Like go on a ride and then do a show; go on another ride and then eat; and go a ride and then do a parade. You get the idea. Maybe, take an afternoon break at the resort.

You might get lucky and only use the scooter here and there. You sound like you try real hard with running exercises; so, maybe, you'll do ok. The long day at Disney and all the walking can get to anybody though.

 

[kdkbrebel]

I am in the same boat, although not in as good of shape. I am 39, will be 40 when we go in July and was diagnosed with MS last May. I am also overweight, so people see me as a fat, lazy person. I have a brace for my leg because I have foot drop from the MS. I can walk fine most days some days I have terrible balance issues and walk like a drunk. Unfortunately heat makes it worse. I know why July right? Unfortunately that is the only time that works for our family. I am looking at it like this, I refuse to not go. I realize I will not be able to go at the pace I am used to which is comando. I am going to do what I can and have an ECV as a back up.

 

[Sunnywho]

I have always been too busy at disney world to notice who is riding the ECVs. Are you having problems with walking stamina? That would be a reason to get one. MS is one of the illnesses that the GAC is intended for, because it truly is a hidden disability. Definitely get a GAC. Other thoughts are staying at a monorail hotel to have an easy place to lie down for an afternoon break and renting a car because waiting in the sun for a Disney bus that arrives with standing-room only can be difficult with MS. Cold vests or frequent ice water (free at all counter service). Nuvigil prescription for fatigue? Nuvigil and getting treated for CCSVI are two of the only things that ever made my MS feel better. Anyway, you probably will get those looks at least once or twice but don't let it bother you.

 

[SueM in MN]

You will find information about Guest Assistance Cards (GAC) in post 6 of the disABILITIES FAQs thread.
Keep in mind that using a GAC will almost never shorten the distance walked nd that most attractions don't have a place to sit and wait. So, if you are concerned about your ability to walk distance or stand and wait, you really need an ECV or wheelchair.

I guess if I were you, I would first go back to the doctor and ask why he is suggesting you cancel your trip in May or use an ECV.
I would wonder what he is seeing and what his plan for treating it is, besides suggesting canceling your trip. Especially as you say you are feeling well and run 3 days a week.
May is a long time away, especially with a condition like MS, which can change suddenly, so my question for the doctor would be why he thinks at this point that you should cancel.

If you need an ECV, your need is the only thing that matters. Even though some people feel they have a right to judge who they think looks like they need an ECV or wheelchair, the only person whose judgement matters is the one using the ECV.

 

[photobob]

We are getting ready to take our first trip since my DW was diagnosed in August. We are going in March to avoid the heat and taking a transport wheelchair. DW has limited endurance and MS affects her legs. Most people on these boards have recommended we use an ECV, but DW isn't quite ready for that. Honestly I think for us it probably would be the best thing but we will use the wheelchair this trip. We will go to the parks when DW feels up to it, if not we'll hang around the resort and enjoy each others company.

Sorry to jump so deep into my own situation, but if your Dr. is concerned over your most recent MRI I think you should listen. Use the ECV!

 

[ttintagel]

I found I was able to tune out any dirty looks by the end of the first day. In realty, there were probably fewer of them than I even thought there were. I made sure to keep a big smile on my face (not hard to do at WDW) and make eye contact with as many people as possible. It did get annoying when people stepped out in front of me because they weren't looking, but, again, a big amile and a cheerful "I'm sorry, these things don't stop on a dime" usually smoothed things over.

I kept my crutches prominently displayed and as vertical as possible. Not only did that reinforce the message of "Hey, she really DOES need this thing," but it made me more visible to people who tend not to look down.

Although I was resistant to using one at first, too, in the end, it just wouldn't have been possible without it. I tried using a manual wheelchair for the fist day, but there are just too many hills and ramps and it wasn't working.

I also know people who wear t-shirts associated with their medical condition; that's a great way to not only defuse any hard feelings from the able-bodied but to create awareness that might stick with people once they get back to the real world.

 

[Nanajo1]

Please don't let other people's attitudes dictate your trip and health. One day of walking could tire you out for the whole trip. I've had flares sneak up on me and its not fun. Better err on the cautious side. You can always walk for a bit. The goal is to have a great trip and stay healthy.
enjoy yourself.

 

[Cheshire Figment]

Basically a person has a certain amount of energy available to them daily. If they relax during the day the amount of energy available will increase; when they sleep at night they recharge their system,

However, when in pain energy is used up much faster than in normal conditions. If you become exhausted, with by what you have done or, more importantly, what you have done while in pain your system will not recharge to the original energy level overnight and you are starting the next day with a lower amount of energy available.

Once around the World Showcase Lagoon Promenade is more than 1¼ miles; most people tend to average 8 - 12 miles per day at WDW.

 

[bopper]

Remember, when you at 8:00pm on Day 3 of your vacation and are in pain or are exhausted, nobody gives you a prize because you didn't use a ECV.

You are just in pain or are exhaused and your spouse is annoyed because they can't do anything else.

Alternatively, you use an ECV temporarily during your high-amount of walking vacation, aren't as in as much pain and have more energy to more things. Just because you use an ECV for this vacation doesn't mean you are in one for life. Clearly you are doing as much as you can to be as active as long as possible. But the idea of a vacation is to enjoy a new place with your family. If the ECV gets you more enjoyment, go for it!

 

[CatNipRules]

I say use the ECV. I was like you the first time I used an ECV at the parks. I'm from Florida originally, so I was always a get out of my way, type of driver. For the first few hours, I imagined that people were staring and was insistant that I wasn't going to use it. Even if I was in a tremendous amount of pain by the end of the day.

That lasted about halfway through our day at Magic Kingdom. We ended up having to leave the parks early because I was in such pain. It ruined the day for my DH & DS and for myself. I have PKD (polycystic kidney disease) and unless you know it, you would never know I was sick. I've had people ask if I'm really sick or just pretending. Sure, it's the highlight of my life to pretend to be in pain.

The rest of our week trip was wonderful. I was able to keep up with my family and I didn't feel like my body was ready to fall apart by the end of the day.

Don't worry about the stares. Like others have said and like I realized, there are far less people staring at you than you think. And if they stare, well, that's their problem, not yours. Trust me, by the end of the week I didn't even care anymore. I'm 40 now and the first time I rented an ECV I was 32. We've been on numerous Disney trips and I have to say that the ECV's have saved every one of them.

We are going to be doing a trip in October and I'm looking forward to it because I know that I won't be in pain from walking so long and so far. Plus, it's always fun to try and get my husband and son to keep up with me. LOL!!

 

[I Love Pluto]

If you need the ECV - and only YOU know if you need it - then use one. Pain is not pretty.