Nerves about the GAC

[PetiteSirene]

My DH uses an ECV and, like you, sitting too long causes as much pain as standing too long. When he needs a break from sitting on the EVC, another adult in our party drives the EVC while DH walks.

This isn't a bad idea it's hard to explain to people that my joints can hurt even when not under stress. I have many sleepless nights where my knees simply won't stop hurting because I am not moving them, even when lying down. My Physio has advised I still exercise on my holiday, hence why I am keen to at least do a little time without the aid of the scooter.

I have never once had anyone say one word to me, but I'm sure if they did I would tell them I will trade them my GAC if they will take my disease.

I would gladly trade needing a GAC or Scooter for bring able to queue and run around the parks like I did only a few years ago!

 

[Mama Who]

What am I? Chopped liver?

Pate.

 

[WheeledTraveler]

I also have a genetic joint condition (Ehlers Danlos Syndrome; there are several of us here with EDS, if that happens to also be your diagnosis). I just wanted to put that out there so you had an idea where I'm coming from.

I tend to agree that if you're only concerned about waiting in lines, a GAC probably won't do much. Even if you were to get one that allowed you to use alternate entrances, the alternate entrances can have longer waits and actually move slower (and, as has been pointed out, they're still the same distance moved).

Checking out a touring plan that tells you when rides/areas are less busy should help figure out what lines will be shorter when you want to walk lines. Also, use fastpasses when possible (whether you're using the ECV or walking).

I really suggest, even on days when you're feeling good, to at least bring the ECV and ride it between areas. Most people walk a minimum of 6 miles every day at WDW (and 1/2 mile of that can be just getting into the park and to the first real area of things to do for some parks). Even if there are days you can do that, it's not worth the pain that you'll have the next day. You can park the ECV in one area and then walk through the attraction lines nearby. Remember, it's not just how you're feeling on a specific day, but that you're doing more activity every single day. Even if you aren't in a park and hang out at your hotel, you're not at home which takes extra energy no matter how little you do. That will build up. It's better to conserve energy. I learned the hard way that the more I crash and then "recover" the harder it becomes to recover and it doesn't always take much to crash so badly that you never get back to the same baseline. It's easy to accidentally over do it at WDW.

I would, however, definitely suggest using the ECV for Soarin' and the Safari, regardless of how you're feeling. Those are the two longest queues I remember.

I'm going to assume that because of the pain and joint problems you have fatigue. If you need to lie down during the day and can't/don't want to go back to the hotel, you can do so in First Aid. If you do have fatigue, it's worth thinking about what other than movement causes problems. It's the things that can't been seen and aren't mobility related that are where a GAC might be useful.

 

[LisaBi]

My DH uses an ECV and, like you, sitting too long causes as much pain as standing too long. When he needs a break from sitting on the EVC, another adult in our party drives the EVC while DH walks.

We have had other guests give us "the look" when switching EVC drivers, but we have gotten past the point where looks from strangers make us uncomfortable when we are doing what is best us.

I too have learned to stop caring about what others think. DS uses a wheelchair at the parks. I haves learned that his limit is about 15 minutes standing/walking at a time, and about 2 hours a day total. So he will sometimes get up a dance a bit if there is a dance party going on, or will get up and dance with the Disney Channel Rocks show, and I have to have to have him walk part of the way into Space Mountain - I just can't push him on those steep hills. One time I thought we could solve the issue by leaving the w/c outside....and of course that was the time that the moving walkway was broken. Never again. Yes, we get some looks when I have him getting up and walking, then sitting and riding again in a queue, but I know his limitations (and my own) and they don't, and I know I'm handling the situation to make it work for us.

Do want works for you and don't worry about anyone else!

 

[KPeveler]

Ah, she beat me to it! I was just going to say that your needs sound a lot like mine - I am another EDSer. there are actually a lot of us here on the boards.

You can talk to Guest Services about the GAC and explain that there are times you must stand, but generally you do not need a GAC if you have a wheelchair or ECV.

If you do want to get up and walk, why don't you do it in places you are meant to walk around, but are not queues that you get trapped in. I am thinking of stores, some attractions like One Man's Dream, and shows like Philharmagic. If there is not much of a line for the show, then you can walk in there.

In general, I would ALWAYS keep the ECV in the line, even if someone else is moving it for you. At least with me, my EDS makes things so unpredictable, I never know when I am going to need my chair...

BTW, Welcome to the Disboards

 

[goofieslonglostsis]

Just a little pet peeve, but ehlers-danlos sydrome is not a joint condition. It is a connective tissue disorder.

As far as lines; one rather errs on the side of caution than to the other side. Let's not forget that lines themselves can be very unpredictable. Even a fastpass and standing in line as the very next guest does not mean you'll always ride within no time. Not talking about the factor of perhaps needing an accessible cart, but rather about the risk of ride breakdowns and other snafus that can cause an unexpected extra wait that can turn into an ugly scene.


Also it is very smart to not even start to compare with DLRP. These are 2 different animals all together. Integration versus segregation. Where DLRP can be "peachy" for those with somewhat "limited" limitations, it becomes a place that has very little options for those who are impacted to such an extend they need more "extensive" help or aids in order to ride anything. This in and of itself alone will have a big impact on crowd control for those features in place etc. Result; a card blue is a front of the line card in many situations (or can appear like it), but is of no help for many that can and do enjoy WDW. Asking for proof has very little to do with it being a "norm" in Europe, it simply is a choice made, where others have made different choice around our continent.

WDW on the other hand? Segregation is a dirty word and it shows. Integration is a big thing and you will find mainstreamed access will be your most common experience by far. Someone who would have done zero homework and just simply arrive with a mobility aid can have a blast. No need for any paperwork for that, mainstreamed almost always and if not clearly communicated. It very much alikes an experience one would have when just showing up on a park walking instead of rolling when you consider lines etc.

Including other-guest-experiences. Yes sometimes there might be stares or comments. Just like in daily life. Just as there will be stares or comments when somebody walks in wearing the most silly not-run-of-the-mill haircut. Things that stand out attract attention. Things that people even think might mean they are being "done wrong" and someone else is "treated better" will easily trigger certain behaviour. Has nothing to do with wheels beneath a bum, but much more to do with how people "tick".

WDW is not a place one needs to worry so much over.

 

[KPeveler]

Just a little pet peeve, but ehlers-danlos sydrome is not a joint condition. It is a connective tissue disorder.

For those of us with the hypermobility type, it often largely is a joint condition. I have neuro, GI, skin, heart rate, BP, bowel and bladder problems, but when I explain the condition in one sentence to a stranger, I say that my joints are bad and are so loose they do not support my own body weight. So, I can see why a person (not necessarily the OP) chooses to say it is a joint condition, if that is the most pertinent part of the manifestations.

 

[goofieslonglostsis]

For those of us with the hypermobility type, it often largely is a joint condition.

Actually it is not when looking at the fysiological stuff going on. We all know it's a connective tissue disorder. Joints only are impacted as a secundairy impact because of a connective tissue weakness. Whether it being from ligaments and musculair weakness that can result in (sub)luxations or it being from secundairy arthrosis caused by those (sub)uxations.

I have neuro, GI, skin, heart rate, BP, bowel and bladder problems, but when I explain the condition in one sentence to a stranger, I say that my joints are bad and are so loose they do not support my own body weight.

I use a different one or actually 2 depending on surroundings, involved ages etc. Everybody knows Pinocchio. Everybody knows what happened when he was still controled by someone pulling his strings and what happened to the poor boy when those string were not being held. Thanks to Disney even young toddlers have an instant very proper insight as to what that would mean mobility-wise.

When being more serious or asked certain stuff, I'll go to the two-liner that says it's a connective tissue disorder which leaves connective tissue affected weakened, yet connective tissue is the building block throughout the whole body. From there on most folks get it into a depth that allows them to "translate", so to say. Whether it being them understanding how different it can impact individuals to starting to sum up for themselves how much different things can be impacted, or having the instant switch to a basic understanding of why my *fill in whatever medical aid, tube, big problem, pain or whatever*.

So, I can see why a person (not necessarily the OP) chooses to say it is a joint condition, if that is the most pertinent part of the manifestations.

Info is changing rather fast. Research has shown GI-problems seem to be the number one complaint, yet almost nothing really known about but finally being researched more in depth. Don't get me wrong, I can see all kinds of reasons why folks can use the term joint condition. It's just not my cup of tea. I see it as calling MS a musculair disease for instance. Very little, too little, is already known about most of the connective tissue disorders by both professional and general public. I'm one of those who don't think it helps to spread more "not quite right" information.

 

[WheeledTraveler]

Just a little pet peeve, but ehlers-danlos sydrome is not a joint condition. It is a connective tissue disorder.

I usually describe it as a genetic collagen defect. I used "joint condition" because it was the wording the OP used and her description was sounding very much like EDS to me.

Apologies to the OP if I was wrong about the sort of condition and for causing the tangent.

 

[clanmcculloch]

I've got a bunch of questions I'd love input on from some of the EDSers around here. I don't want to derail this thread so I started one on the community board. Would any of you mind heading over there and helping a gal out? I could really use some help.

 

[StrwLady]

I assume you are under a Dr's care for your condition. I have osteoarthritis in both knees and have been under the care of a Pain Management Specialist for a year now. One of the things I use to manage pain is Lidoderm lidocane patches. You wear them 12 hours on and 12 off. Lidocane (in case you don't know) is a numbing medicine. They really helped me my last trip. Maybe you can discuss this with your Dr.

 

[bopper]

I am nervous of the reactions I will get, I know I can be sensitive anyway, but my feelings of having this condition is fresh in my mind and still a massive thing for me. I've always been independent but going from the woman running around Disney to one who can't walk more than five minutes without being in pain in a few months is just a hard thing to go through (for me anyway)

Maybe it would help not to think of yourself who is somebody who HAS to disney in a wheelchair now, but somebody who STILL GETS to go to Disney even though you have a condition but you use a wheelchair as a tool so you don't have to stop enjoying the things you love.

 

[PetiteSirene]

Hi everyone! Thanks so much for your input. The genetic condition I have is Hyper Mobility Syndrome. It affects my ligaments and has a list of symptoms a mile long, including chronic fatigue, anxiety and chronic joint pain.

I am currently in WDW and spoke to the CS in MK and they gave me an alternative exit GAC. I explained my situation and they were very encouraging and helpful with my needs. Queues haven't been so bad so I have been parking my scooter and using the lines. Though for some rides I have used the GAC even when the queue is short because it's a shorter walk.

We went to the Olly Murs concert yesterday and I was seated for the whole thing, I was on my crutches to get there and it reminded me how important it is for me to get up and move! I could hardly walk after 2 hours of sitting.

The ECV and GAC have really helped me have a great time this holiday, using them together to find a happy medium where I'm not standing or sitting too long. I find the balance of using the scooter to drive then parking and doing attractions with a little assistance with the GAC was perfect for my needs (I checked with the cast members that this was okay) Though often I've just queued in my scooter even if it meant a longer wait (Star Tours, Space Ship Earth, Haunted Mansion etc)

We were directed to the Fastpass line for rides like Toy Story Mania, but we only went on these rides once. We've been more concentrated on shows and things my friend actually wants to do and see.

So far I've only had one rude person and that was one of the bus drivers... But he wasn't just rude to me he was rude to the other family with a disabled son too. Everyone else has been amazing.

The medication my doctor has given me seems to be helping a lot, i haven't had a bad joint day since i got here (bar a few cracks here and there) I know a massive part of my condition is muscle strength and pain control, but this trip has showed me that Disney really can still be so magical for me. Thank you everyone for the support x

Edit: And sorry yes I say it's a joint condition rather than a connective tissue because generally I get a blank look if I say that.