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Old 06-23-2014, 07:21 AM   #31
StitchesGr8Fan
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This may be a naive suggestion, but what if you fidgit in line? I experience terrible pain in my legs and back from standing (no diagnosis yet other than hyperextended joints) and have found that rocking from foot to foot and just moving around in my little bubble within the queue keeps the pain down to a more manageable level. Do. Look silly? Probably. But I don't care since I also look silly hobbling around like a 90 year old when I'm in my 30's or yelping in pain because my back starts spasming.
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Old 06-23-2014, 09:20 AM   #32
Piper
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Originally Posted by Drinehart811 View Post
Yeah, I think maybe I'll just be out of luck. It seems silly to have to rent a wheelchair or something just because I can't stand on a bus (or in general a long time In a single space without being able to sit or move much), and having to wait another 20 minutes for another bus defeats the purpose of not standing on the first one.

I think I'm just feeling upset because I know one day I will need an ECV, but that is not yet, and I don't want to be forced into one years before I need to be just because I need a little help. I'm not trying to skip lines, I just don't want to blow out my knees on day 4 of a 9 day trip standing on a bus and falling or slipping because I can't physically grip the handle well enough. Or not be able to see the fireworks because I can't stand for 30 minutes to see the whole projection show and fireworks.

I guess all I can do is talk to GR at my resort, see what they have to say, and not really expect much of anything. I'm trying to not get emotional but it's difficult because it seems like disney is used to people trying to steal the whole cake and I'm just asking for a bite so to speak. I would just bring a camping stool to rest for those long unmoving waits but I'm pretty sure that's not allowed either.
I understand where you're coming from. I had to use an ECV at WDW for several years before my doctor prescribed one for me at home. Of course, during those years, I could not go to shopping malls, museums, etc. because it was just too much. I will also admit that I said no to the ECV when my doctor first mentioned it. After I "gave in," I wished I had done it much sooner!

I don't use it in my home, I use a crutch or walker. I want to walk as long as I can. I also use a stool in my kitchen because standing even long enough to cook an egg causes a lot of pain. But the ECV allows me to do so many more things that I wouldn't have been able to do!
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Old 06-23-2014, 11:28 AM   #33
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I'd rent a wheelchair because it will allow you to sit down whenever you need to, but the rest of the time you'll be able to walk and you can just throw your purse and souvenirs in the chair and won't have to carry those.
It can seem hard to accept a wheelchair but remember disney isn't everyday life: there are tons of people who'd NEVER use a wheelchair in everyday life but really need one at Disney. After all, Disney is all about standing in one place waiting, walking etc. It can be a lot harder than everyday life.
I would not expect a DAS because Disneys answer to mobility issues is to rent a wheelchair or scooter. Even if you don't want one or say you don't really need one, that will be their answer. They don't let you choose if you want one or not, they just say that's what you'll need to do. If you want a DAS, you would need to explain why your need is related to the actual waiting in line, not mobility- for example, anxiety/claustrophobia/etc
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Old 06-24-2014, 04:17 PM   #34
ImaDisneyGurl2
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I can tooootally understand where you're coming from,- as I too have RA - began at age 28 for me and I was a really "young mom" always on the go til it hit HARD.. I visit WDW yearly (since 90) and the LAST THING I wanted to do was look like "I was asking for a handout" regarding "seating", lines, etc. I was determined NOT to use an ECV or an EWC as long as possible because I (unjustly) dealt with feelings of humiliation, failure,etc., I was young, 125 lbs, Fairly "attractive"- (well, to my hubby at least lol) it was blowing my mind & my confidence to even CONSIDER going to WDW and utilizing ANYTHING that was considered for "Disabilities"... (my HANDS were also my 1st issue,-but overall fatigue was a close 2nd for me..) One year when I was in my mid-30's, and although at the time I didn't require an ECV, or EWC anywhere ELSE, I decided to bring my EWC (for the 1st time ever) on the trip -(although I cringed & cried a bit that trip)BUT- I ONLY rode in it when I HAD TO, it helped me because I can NOT STAND FOR long periods also, & when I didn't "want it" I left it "parked" nearby enough where I could grab it, & I NEVER took pictures while in it...it made my trips more enjoyable after that & I never went without it again. I still get pangs of "self-consciousness" (because I still only need it for WDW-TYPE-Trips)- But when Im spending $7K+ on my "1 BIG yearly Vaca" I'll be darned If Im gonna let my (own personal issues vanity) wreck my time. Sure I jump outta that chair at times & get the stink eye from some people who think a disability should be something they can "obviously see/discern" for EWC ECV users,- but WHO CARES what THEY think? And I don't owe an explanation to anyone either, its no ones biz but my own...The Bus had too many challenges (as you, & others have mentioned) for me to "get around", so I end up renting a car-- Ive found ways to save on the exorbitant fees,-(for some odd reason booking online, then calling 3x seemed to help quoting competitors fees,- Ive found coupons, and even after reserving,- booking last minute upon arrival actually HAS saved me money-- (in late 4/2013 I rented a FULL SIZE MINI VAN for 12 days for $350!!- no joke!) I wish you luck. Some RA years at WDW are "better" than others for me,...but it always is better than NOT going at all (for me)...-& THIS YEAR, I'll be dealing with THAT,--AND a DD (22) who just went on Hemodialysis...Even with all my excruciating pain how can I compare to her brave struggle... We'll "make do"..It's gotta be possible. It may not be perfect, but no trip is...the important part for ME is spending time making memories with my beloved little family..It's Ok if I don't "hit the parks" from opening til closing etc.-Im going to be happy just being with them in the "happiest place on earth"--(may not be a "perfect" place, lol- but it certainly is a happy one!). Best of Luck to You!!
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Old 06-25-2014, 11:47 AM   #35
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I get that you don't want an ECV, but how about this. Rent a manual wheelchair, park it in each land and just grab it when you're entering the shows that have waiting areas that don't move. You said you're fine with the ride queues, just not the waiting areas for shows. Between lands you can use the wheelchair as your pack mule. You'll also have it for the buses as you leave the park so you can sit while waiting and then the wheelchair is a visual cue to the bus driver to get you loaded first which means you'll get a seat. You don't have to stay in chair on the bus. In fact, your BFF can hold it for you like people hold strollers (most manual chairs fold easily).

I get you feel you're too young. I'm sure my 13 year old thinks she's too young too. The thing is, we wouldn't be able to go to WDW without one. She doesn't have RA but when trying to figure out her diagnosis her symptoms seemed to be closest to JRA just so you understand what she's dealing with (same condition as WheeledTraveler, just nowhere near as bad and much earlier in the process). We park the chair part of the time, though she prefers to spend more park time in the chair and then at the resort she never gets in it (we spend only a few hours per day in the parks then hang at the resort the rest of the day, meaning she doesn't use it a lot, just during the times that are most difficult for her).
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Old 06-25-2014, 12:19 PM   #36
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I was diagnosed at 5 . 40 years later I am here to tell you quit being so stubborn.

just because you do not need accommodations in your daily life is no reason to eschew every available resource.

quit thinking of it as fast tracking and instead consider it DELAYING the inevitable. you force yourself to push through out of some self imposed pride crap and you WILL need that ecv for everyday use ahead of schedule.

for anything more strenuous than grocery shopping, I need my wheelchair. if I had listened to my doctors and everyone else telling me to know my limits and to pace myself, I may not be in such bad shape now.

for me the lines are way too slow and crowded to successfully stand or walk through them let alone all the walking getting from hither to yon. you do not need to use the WC/ECV at all times.
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Old 06-25-2014, 12:36 PM   #37
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Quote:
Originally Posted by Drinehart811 View Post
Thanks. Yeah, these are the types of things I have been looking into. Big concern was mostly resort bus so hopefully the driver will be able to ask someone to give me a seat if there are none.
this is an EXTREMELY unrealistic expectation.. the bus driver cannot FORCE anyone and sorry but you are not the only person with a hidden disability.. the guy he asks to move may have a heart condition, or the women has crappy knees. or the kid with the brain tumor and balance issues.

my husband might be willing to give up his seat if asked nicely.. I would not be and I can promise you very few others would be either.. they are just as tired and sore as you are and might have had to wait for just a s long if not longer to get on the bus as well

if you absolutely MUST be seated on a resort bus, you need to provide your own.
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Old 06-25-2014, 12:58 PM   #38
sharadoc
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I have the same issue - standing is the hardest thing for me. I have rheumatoid, as well as a torn ACL that was never fixed and meniscus tears. One knee is completely devoid of cartilage. I also have arthritis in my shoulders that makes standing still very painful because the weight of my arms starts to really hurt.

Honestly, what we do is go at times when lines are not an issue, make fastpass reservations, and stay late at parks when people leave. I also acknowledge that I can't ride everything because of the lines issue, it's just something I've accepted and have learned to enjoy other things. Like I'll do things alone - Country Bear Jamboree, small shows, people watch.

I have tried to use an ECV and it was more cumbersome than anything. But I will use one eventually, I have just found that walking is better for my mobility and avoids stiffness, so the ECV just made my day worse.

Sorry that you're taking this badly, unfortunately, that's life for many of us and if you can find a way to accept it and appreciate what you CAN do, then hopefully you can have a good trip!
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Old 06-25-2014, 03:48 PM   #39
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I get your pain, I have had RA since I was 5 years old. 24/7 pain the variation is how much pain, add in the stiffness, knees don't work (yes I get looks when I go into the handicapped stall but my knees won't get me back up from those low levels) and I am at Disney a lot. I travel with my adult DS who is obviously very disabled.

I have been at the bus stop at the end of the day with pain searing up and down my legs and back. I don't dare sit on ground as I will never get up, I try to lean on the rails and do one of those "calgon take me away thoughts." I am sure there are many folks around me experiencing the same thing. When we get on a crowded bus I have a 50/50 chance that someone will give my DS - who is obviously in need - their seat. I will usually stand in front of him if they do because the odds of both us getting a seat (even though I have a hidden disabiltiy) are maybe 1 in 10. When he is not offered I straddle him, we hold poles and fingers crossed we don't become up close and personal with someone sitting. Some parks we just drive if we know in advance the bus line will be too much for us. I would never ask the driver to ask someone else to move as none of us know anyone else's story and I can imagine it would not be well received.

I guess my point to help you decide about the bus is plan to travel to/from parks non-busy hours, if need be find a bench and have BF stand in line then you join him as he is boarding or both sit and time yourself joining the line when you are in a position to get a seat on next bus. With hidden disabilities, since so many of us have them, there really can be no expectation of someone giving you their seat just because you say you need it.

Regarding parade viewing etc - you would need a mobility device and maybe they will accept a DAS. We have now found that many spots will refuse the DAS. Last fall in EPCOT we approached the Illuminations area by gift shop that was very empty - only a few wheelchairs - and show was ready to start. We showed the DAS and asked if the two of us could watch from there. Was told point blank, no wheelchair in your party, no entry. So even the DAS is not always helpful at some places.

Most of your plans for rest etc seem to be what you will need to do. I do find my big meal at lunch at table service to be waited on, A/C and resting as long as I can help me re-boot for more. We like to grab snacks and sit for the while it takes to wait for parades and fireworks, that sometimes helps me comes time to trek to bus. I have started to take afternoon breaks on days that are really hot with longer evening hours. Floating in the pool or just laying down in the A/C is helpful.

I travel to Disney quite a bit and I am just glad I can go and do my best to manage my pain and plan well. There are simply way too many people in our same/similar situation for Disney to be able to assist everyone and I am just happy they have lots of benches, shade and quiet places for me to rest. Oh and some yummy snacks that always make me feel better!
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