Intermittent/temporary symptoms

[fabfemmeboy]

For those of you with conditions that have widely varying symptoms - sometimes you're fine or almost-fine, sometimes you're in really bad shape - how much do you plan in advance for worst case scenarios? I have a seizure/nerve disorder NOS that can without warning cause some pretty significant problems with walking and movement. Should I plan on an ECV "in case," even if it means I end up essentially riding it around when I probably would have been fine? I'm used to contingency plans at home, but I'm a lot more able to just stay put there than I can at WDW. How do you handle unpredictable conditions?

 

[ahuntington]

I would plan for the worse case scenario and hope for the best.

 

[mistysue]

I would plan for the worst, exactly what to do in your situation for me would involve a few questions. You don't have to answer here, of course, but I would consider:

When it kicks in, how far can you reasonably expect to travel by foot knowing you will be additionally stressed by where you are? You are in the park, would you be able to return to the hotel to get the ecv? Would you be able to get to the park entrance to rent something?

Say you rent a chair from Disney at the individual park because you suddenly needed it, could you get back to the hotel without it? (I'm assuming if you rent from the park it works like a stroller and you have to return it- I might be wrong, no experience here)

If you rented one for the whole trip, would it make sense to figure out if you can park it for a while in the park somewhere? Or is that not a thing? I would think it might be nice to have it with you and be able to park it sort of centrally in the park so you could get back to it if necessary, but then don't have to do special loading everywhere you go. If your body gives you any sort of warning, I would think ultimate ideal would be to have the thing just sort of living in your room for the week, but usually bodies aren't quite that user friendly.

 

[fabfemmeboy]

Those questions actually help break things down for me in ways I hadn't thought to before. I had been thinking much more "big trip" about it - all the planning that goes into renting, figuring out the money and the renting and convincing myself it wasn't a sign of laziness/being a hypochondriac, when the real questions I should have been figuring out were the ones you pose: when it starts, can I get to the place in each park to rent something without being completely exhausted by the process? Or can I get back to the hotel to pick up something I've rented and left there, because so often they're out of ECVs at the park by mid-day? And based on prior experience (including a flare-up on the way back from the store last night), I think that's probably a 'no.' I should go ahead, suck it up, rent it for the whole week, and worst comes to I'm riding when I could theoretically walk part of the day. Thanks!

 

[2tinkerbell]

I certainly would not feel that you are being neurotic or lazy. Another way of looking at it is that if you have an ECV, it might just prevent or lessen any flare ups.

 

[fabfemmeboy]

I certainly would not feel that you are being neurotic or lazy. Another way of looking at it is that if you have an ECV, it might just prevent or lessen any flare ups.

Logically I know that. I just have close family members (who aren't going on the trip anyway) who, although lovely people, don't understand any condition that isn't as visible/obvious as, say, a broken limb. But that's my own set of issues to deal with and get over. Wheels could prevent a flare up and would definitely lessen the impact of one by not taxing the rest of my nervous system nearly as much as trying to limp/stumble my way around.

 

[RubySue]

There are hundreds of invisible diseases/disorders/conditions/health issues. No stranger (or even, in many cases, family and friends) can know exactly what health situation a person is experiencing.

If you experience negativity while using an ECV, ignore it, even if it's tough sometimes. I would guess that EXTREMELY FEW ECV users are neurotic or lazy.

My motto is:
It's better to have it and not need it than need it and not have it.

 

[fabfemmeboy]

Oh, of course they aren't - and while re-reading my post I can see how it could have been taken that way, it wasn't at all how I meant it and I'm sorry if I caused anyone offense. At the risk of getting into too much personal information, my mother in particular has always claimed I'm a hypochondriac so when I consider something like renting an electric wheelchair or other mobility aid for the week I hear her voice in my had on a loop which makes me (and me alone) feel like I must be paranoid and making up reasons to rent a ride for the week. It was meant as a flip comment about my own mental state and by no means was something I meant to put on anyone else, nor did I meant to make a generalization about others who use mobility aids of any kind.

It's kind of funny, I'm honestly not bothered by what people I don't know will think about my use of an ECV or wheelchair - I'm used to people staring for a variety of reasons in my daily life so I honestly barely notice anymore; I'm a lot more nervous about what my partner or other traveling companions would think because a decent portion of the time I'm fine. But again, that's my own issue to work out (because in reality I know they would be supportive), and it probably is smartest to plan to rent something just in case.

 

[WheeledTraveler]

I bought my first wheelchair when part of my family (including my parents) still wasn't positive that I really had physical problems. For the first several years I owned it, there was a lot of "are you really sure you need to bring it" and "it's not that much walking" (I was 20 at the time and still living at home when not at college.). While my conditions aren't as episodic as yours sound like they can be, the could flare and using the wheelchair ultimately really did help prevent flares at that point.

The good news is that you've said the people who doubt the validity of your impairment aren't going on this trip with you. If you're really worried about comments from them, you could always just not tell them and make sure photos are all taken away from the ECV or wheelchair.

My partner and friends were always supportive of my wheelchair use. Most had been urging me to consider a wheelchair long before I started using one. It ended up benefiting them, as well, because I could actually do more things with them once I didn't have to worry so much about getting too far away from some place "safe".

One thing you probably should think about is if you're safe to drive an ECV while you're having an episode. If you aren't, you probably need to rent a manual wheelchair instead for safety reasons (both yours and other people's). The downside is that you'd definitely need to be pushed in a wheelchair and wouldn't have so much freedom when you need to use it (when you don't need it you can always park it with stroller parking or other places and walk through queues, shops, restaurants, etc.). If your mental state stays the same and have upper body control during an episode, you should be fine with an ECV. If you generally have enough warning to get off to the side and any problems with upper body control and mental status go away within a couple minutes, you might also be okay with an ECV. What you don't want is to all of a sudden not be mentally able to drive and/or to suddenly have arms/hands that you can't control that could steer the ECV into a wall or other people.

 

[fabfemmeboy]

One thing you probably should think about is if you're safe to drive an ECV while you're having an episode. If you aren't, you probably need to rent a manual wheelchair instead for safety reasons (both yours and other people's). The downside is that you'd definitely need to be pushed in a wheelchair and wouldn't have so much freedom when you need to use it (when you don't need it you can always park it with stroller parking or other places and walk through queues, shops, restaurants, etc.). If your mental state stays the same and have upper body control during an episode, you should be fine with an ECV. If you generally have enough warning to get off to the side and any problems with upper body control and mental status go away within a couple minutes, you might also be okay with an ECV. What you don't want is to all of a sudden not be mentally able to drive and/or to suddenly have arms/hands that you can't control that could steer the ECV into a wall or other people.

That's definitely a consideration. My mental state/level of coherence remain the same, and I'm not too worried about suddenly ramming through the crowd. What's more likely would be suddenly being unable to move it out of the middle of a walkway or something. Really what I need is an electronic wheelchair because the hand control would suit my condition best (I sometimes have issues with hand-clenching if I hold it that way too long, which would wear me out with how ecvs are set up), but so far all the recommended renter sites say they won't rent those unless you have one at home. So the hunt continues.

 

[bidnow5]

The reason they don't rent power chairs to anyone that isn't used to them is they are much harder to control the joystick controls speed, direction both right and left plus forward and backward. Without training people could get hurt

 

[fabfemmeboy]

True, and certainly a good reason to not rent them out to everyone. Unfortunately the more I think critically about what my needs are, the clearer it becomes that an ECV would be more dangerous for me than walking/stumbling, where an electric chair would be much safer...assuming I could operate it properly. Guess I need to find somewhere near home I can rent one to train on and get used to the controls then!

 

[RubySue]

Oh, of course they aren't - and while re-reading my post I can see how it could have been taken that way, it wasn't at all how I meant it and I'm sorry if I caused anyone offense. At the risk of getting into too much personal information, my mother in particular has always claimed I'm a hypochondriac so when I consider something like renting an electric wheelchair or other mobility aid for the week I hear her voice in my had on a loop which makes me (and me alone) feel like I must be paranoid and making up reasons to rent a ride for the week. It was meant as a flip comment about my own mental state and by no means was something I meant to put on anyone else, nor did I meant to make a generalization about others who use mobility aids of any kind.

Oh, no, I'm the one who should apologize. That's the problem with written communication, one can't hear the tone of voice. I didn't take offence at anything you said and my statement in bold about very few people using ECVs being lazy or neurotic was not aimed at you. It was just general frustration because those of us who use ECVs/wheelchairs, but outwardly appear healthy, sometimes encounter unfair judgement. It's a common topic here.